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Other Peyronies Disease Discussion Boards => Open Questions or General Comments (that won't fit under any other topics) => Topic started by: Hawk on September 22, 2005, 03:58:52 PM

Title: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Hawk on September 22, 2005, 03:58:52 PM
This area is for those questions that are not covered under any of our current topics so please read the topic titles.  If a question and and answer develop into a discussion of enduring interest, we will make a new topic for that subject and move all the related posts to their new topic location.

This becomes a very natural way to establish new topics.  If you initiate a question that attracts significant discussion, that becomes a new topic.  If it supports a brief exchange then they remain as valuable posts under "Open Questions"

As with every topic on our forum, everything is on the table and up for discussion if it elates to Peyronies Disease.
Title: Does this Sound like Peyronies Disease? by: Schoul
Post by: Hawk on September 22, 2005, 10:08:54 PM
Posted by SCHOUL []under "Read this First" and  moved by Hawk

I'm not sure if what I have is peyronnies or not, I'll elaborate. While in its erect state, my penis looks completely normal, while flaccid it looks normal aswell most of the time. Sometimes when my penis is filling up, I'll temporarily have an hourglass appearance at the middle. It only really occurs when my penis is in transition from flaccid to erect.

The hourglass can look pretty pronounced at times, the middle section being maybe 3/4 as thick as the sections around it. The hourglassing mostly occurs only after a workout or while I'm working out if I start getting erect while running. It almost never occurs if I'm warm and relaxed, or if it does occur its miniscule, like 18/20 or 19/20 the size of the surrounding tissue.

Usually the only time it happens is after I run 4-6 miles, and try to erect myself shortly after my cooldown. The indention, or hourglass fills up within 30-60 seconds most of the time and my penis looks completely normal.

Does this sound like peyronnies disease, or as my friend put it, simply tougher skin in the middle that goes away when erect (and no problem). I consulted my doctor about this but he doesn't seem worried at all - I'm 20 years old. Will this sexually impare me later in life?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: lost2 on November 03, 2005, 08:55:28 PM
 In response to question by schoul- Is this Peyronies?  I can't say for sure but any change in the function of your penis should  raise questions. You stated that your doctor was not concerned about the change or hour glass shape you describe(I have a reverse hour glass shape plus an up curve) well, I cannot believe the apathy or flip attatude of some doctors. It could be many things maybe but find a doctor that goes to the trouble to find out.  You can bet that if it was his penis he would be worried!  I agree with hawk that we should name our doctors and I will as soon a I can figure out where it should go.  thank you    lost2                                 
Title: do i have it
Post by: bholiday on November 16, 2005, 09:21:35 AM
Hi
I am 18 and think i have the condition. My penis naturally limps to the left, but when erect not only points to the left but also somewhat curves that way too. the glans penis (head) too curves that way.  by penis also points up towards the ceiling, and curves up slightly (ie parallel to my stomach when standing) - although i hear that may be normal.  

I think i sometimes get the hourglass appearance It is easy to bend my penis to the left, but impossible to do it the other way.  As i have only just recently completed puberty i thought that it may have just been either normal or temporary. I live in a culture where we dont really talk about this stuff and i dont get exposure to other men''s penises. I thought i would just grow out of it. However many of you seem to say that the sooner i get it checked out the better.

so do u reckon i should see my GP, or because i am so young i should just wait and see what happens?

also - Some websites say that curvature is normal.  when does 'normal curvature' become peyronie's?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: phil on November 29, 2005, 09:33:41 PM
All:

I've read that some believe that Peyronies Disease has an immunological basis, but has anyone found anything that suggests an infectious cause or relationship?  How many of us have had a prostate infection, or prostatitis? Prior to, or concurrent with the development of Peyronies Disease?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Joshua on November 29, 2005, 09:48:34 PM
Quote from: phil on November 29, 2005, 09:33:41 PM
All:

I've read that some believe that Peyronies Disease has an immunological basis, but has anyone found anything that suggests an infectious cause or relationship?  How many of us have had a prostate infection, or prostatitis? Prior to, or concurrent with the development of Peyronies Disease?

I once read on an obscure site in a research paper that it might be viral in nature. However, even with a very concerted effort I have been unable to re-locate that study. I do once recall a few men posting possible benefits by taking special antibiotics.
If I recall the study mentioned locating a virus in the tissue and the plaque was induced via the bodies attempt to heal or destroy the plaque.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: phil on November 30, 2005, 07:57:01 AM
Joshua,

Thanks.  I had prostatitis concurrent with the development of Peyronies Disease and that complicated my doctor's diagnosis.  While on antibiotics the Peyronies Disease seemed to go away.  Once off of them, it returned.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Joshua on November 30, 2005, 03:19:35 PM
Thats very interesting and its not the first time I have heard of improvement while on antibiotics. If anyone out there has any links to research compiled on peyronies/viruses, please share it with me.

Thanks
Joshua
Title: Re: Antibiotics - Peyronies Disease - Scar Formation
Post by: Hawk on November 30, 2005, 08:57:57 PM
Assuming the following information is accurate, rather than helping Peyronies Disease through antibacterial activity, these antibiotics are likely having a disrupting effect on the collagen/scar process.

Here is some information off of a couple websites.

Fluoroquinolones are synthetic antibiotics that effectively inhibit the metabolism, proliferation, and invasion of fibroblast cells reducing scar tissue formation. This technology differs markedly from other methods of scar tissue prevention by providing for the systemic delivery of a fluoroquinolone by oral or intravenous administration. It exploits the discovery that fluoroquinolones found at serum levels following recommended oral and intravenous dosing have an inhibitory effect on fibroblast metabolism and proliferation, as well as matrix, collagen, and proteoglycan syntheses.


The following antibiotics are Fluoroquinolones and interfere with fibrin formation:

   * Avelox 6
   * Cipro 1
   * Cipro I.V. 1
   * Floxin 8
   * Floxin I.V. 8
   * Levaquin 4
   * Maxaquin 5
   * Noroxin 7
   * Tequin 3

There is some info on a commercial site www.careforscar.com
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: phil on November 30, 2005, 10:20:37 PM
Thanks for the info Hawk.  I took both Levaquin and Tequin.   I wonder if in the early stages this might be an effective treatment.  One would have to take it for months until the inflammatory stage passed.  I checked out the website
( www.careforscars.com) and it talks about using aspirin and similar anti-inflammatory medications to reduce scarring.  Has anyone tried long term aspirin or motrin for Peyronies Disease?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: solat on December 07, 2005, 07:39:35 PM
Hi, I'm new here. I'm 23 and first noticed aleft bend in my penis almost 8 months ago. For the last 3 months I have been taking Vit. E, Bromelain and Gotu Kola with at best minimal results. It seems the severity of the bend fluctuates a bit from erection to erection but is roughly 30 degrees or so to the left. I have never experienced any pain whatsoever. I'm a normal 23 year old and hate avoiding opportunities when women come my way but I'm absolutely terrified. I keep having nightmares about this actually. Does anyone have a similar bend and can tell me whether it is still possibly to have sex at all?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: j on December 07, 2005, 09:17:51 PM
30 degrees is not a big deal. If the plumbing works, you're good to go.  Hardly any guys are perfectly straight, and that's definitely not a requirement. 

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: solat on December 07, 2005, 09:26:24 PM
Thanks, after reading some of the posts here, I realize it may seem like I'm overreacting to this but to look down one day and see my penis pointing in the wrong direction was pretty devastating. Also I just returned to school and have more of a social life and find myself being hit on by attractive ladies but so far I just can't bring myself to whip out my bent penis in front of them. The thought scares the hell out of me. Also I can still get good erections but they are much harder to keep for long periods of time and I have lost some length and girth so I worry about that as well. Anyway, thanks for letting me say these things, it kind of helps, ya know?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: dcaptain on December 07, 2005, 10:23:00 PM
Solat, hang in there.  The mental shock is pretty difficult to deal with, but it does dissipate over time.  Peyronies Disease sucks, but it is something that you can live with and even have sex with.  Once you get more comfortable with it, you may find that its easier to be comfortable with a girl.  Give yourself all the time you need to adjust.  And learn as much as you can and see which treatments might make sense for you.  We're all here for ya.   
Title: reply to Solat
Post by: Joshua on December 07, 2005, 10:33:10 PM
I second what dcaptain has expressed. It is solid advice. I also agree with "j" that with a 30 degree bend you are likely not going to have a big issue with intercourse. The vagina is very accommodating. Don't allow this to get into your head.  I assume you have seen a Dr. If not you should pursue that avenue as well. Welcome to the forum there are some great guys on here. We are glad to have you with us!
Joshua
Title: Re: Phil - apirin /scarring
Post by: Hawk on December 07, 2005, 10:47:21 PM
Quote from: phil on November 30, 2005, 10:20:37 PM
Thanks for the info Hawk.  I took both Levaquin and Tequin.    ( www.careforscars.com) and it talks about using aspirin and similar anti-inflammatory medications to reduce scarring.  Has anyone tried long term aspirin or motrin for Peyronies Disease?

I am not sure you could safely load up on enough to have a major impact because in the case of asprin specifically, I think they apply it topically directly to dermal scars.  I am still studying this material however.  I have slowly read the one article twice (in our foruum's "Resource Library") and absorbered information on both readings.
Title: Re: Reply to NewsRoom post by "j"
Post by: Larry H on December 19, 2005, 06:54:54 PM
"j"

I'm replying here so not to put some non-NewsRoom info under that topic.

I agree, the studies are so small and uncontrolled that they are all but worthless. I guess the best that can be said is a few doctors are at least trying. I do think that this is another example of why the patient needs to become vocal and start pushing people. I'll bet if women had something like Peyronies Disease they would be orginized and raising hell.

You made a statement that hit home with me.

"We just get more urologists prescribing more things, more money being spent, and seemingly little if any improvement for patients."

Well, I'm in a fight of sorts with my urology group. I had 12 IV treatments a couple of years ago. I paid my co-pay, paid a biil for the balance of services not covered by my insurance company and thought that was it. Then I receive another bill for just under $600.00 for something the insurance company didn't pay. It seems that each treatment cost about $1,000.00, but in addition I'm being billed for $850.00 a treatment for use of the facility. My insurance company paid $800.00 a treatment, so they are now billing me for $50.00 a treatment that was not covered by my insurance.

OK, the treatments took about 15 minutes each, the the sheet on the table I was on had to be replaced, and hospital gown I used had to be washed. All of this cost $850.00 each treatment?

In total they got about $21,000.00 from my insurance company, about $500.00 from me, and what do I have for all of this? 30% more bend than before, to now around 80 degrees, 100% more plaque, and another bill for $600.00.

One would think they would accept the $800.00 ($9,600.00 total) and let the patient off the hook for the other $600.00. I'll bet if I went in there as private pay the charges would have been 1/2 of what they charged the insurance company.

Well I got that off my chest, let's move on.

Larry
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: j on December 19, 2005, 08:14:45 PM
That is indeed an amazing bill they handed you - 21K for 12 injections. Hard to imagine how anyone in the medical industry could look you in the eye and say that it all made sense or could be justified in some way. 

I paid about $2800 out-of-pocket for TV before giving up. Insurance paid nothing.

Until now, I hadn't really reflected on all the money being spent on ineffective therapies.

After several years of following this and other forums, I don't recall a single poster who announced he was starting a non-surgical therapy and who then posted, later, "it worked".   Lots of "some improvement maybe".  Lots of guys sick for months on Colchicine, millions of dollars worth of TV dutifully applied,  many painful injections.  Zillions of pills swallowed, vitamin E coming out our ears.  And nobody getting fixed.  Is it just me, or do others agree?










Title: Re:j - Does anyone get better from treatment?
Post by: Hawk on December 19, 2005, 09:11:24 PM
j,

I am a bit surprised at your quote,
Quote"I don't recall a single poster who announced he was starting a non-surgical therapy and who then posted, later, "it worked".

In my relatively short time around, I am sure I have read of significant, functional , improvement that caused people to say "it worked".  I agree that I know no one going from an 80 degree bent to the point that there was no sign they ever had Peyronies Disease.  I would call that, the cure we don't have.  I also agree that since somewhere between 8% to 20% may spontaneously resolve that we are left wondering if someone paid thousands of dollars for a spontaneous reversal when they do announce that it worked..

This gives me an idea.  If we can settle on exactly what we consider"significant improvement", we can make a topic exclusively for those that meet this qualification, and copy all those posts to that area as well as under the treatment that may have brought the success.

The topic could be, "Case Studies of Successful Reversal of Peyronies Disease"

Give me some guidelines!

PS: Joshua for one may be pretty close to pre Peyronies Disease status.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: j on December 19, 2005, 09:37:06 PM
Yes, memory is a funny thing.   But before you right me off as a hopeless cynic, consider that the main reason I read forums and web sites is because I'm looking for something that works. In about 8 years now (8 with Dupuytren's, 2 with Peyronie's), I've yet to see it, or I'd be using it. It's not like I'm wanting everything to fail.

I do think I recall a couple guys saying that long-term use of a VED had improved their bend.  So I'm not writing that one off, it's in a different category. But it takes a real investment of time and a belief that it will work.There are reasons I think it might not work in a lot of cases - that's another discussion.

You're right, between the apparent rate of spontaneous resolution and the subjective evaluation of improvements (if any) it's very hard to make a case.

But there is one thing I'd need to see in order to take a therapy seriously:  significant (i.e. 50%) reduction of curvature. 


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: roadblock on December 19, 2005, 10:21:36 PM
I have to say that this discussion has highlighted many of the crucial issues with regards to the scientific evaluation of cause and effect.

The end points are critical...what results are we looking for? What results are significant? If Person A goes from an 80 degree curve to a 40 degree curve, is that more or less significant than a 30 degree to a 15 degree (both 50% improvements)? In general, using percents helps to standardize the assessment of "effect" of any particular treatment. But with the three major components of Peyronies Disease (angulation, plaque and pain), which are we going to evaluate? The simpler the end points, the more clear the results become.

Another factor in evaluating the efficacy of any one treatment is how well you can attribute the result to the chosen therapy. This is extremely difficult in "case studies" especially with Peyronies Disease because we all are doing anything and everything to improve our situation...Vitamin E, Colchicine, enzymes, heat, etc. How can we say difinitively if any one (or combination) of these therapies are the reason for our results? This is of course the reason that the ideal situation is a "controlled" study where all variables are the same, the groups contain statistically similar participants (in terms of age, diet, etc.), and there is only one variable (such as Vitamin E supplementation) being evaluated. The results between the two are compared then to see if the test group has a better outcome than the "control" group that has no intervention.

Another point on endpoints or "results".  When you see the term "double-blinded" it means that neither the tester or the patient know whether they are receiving the placebo or the actual therapy. This is very valuable when the endpoint is subjective, where the data that will be studied might be questions regarding pain or sexual satisfaction before and after the treatment. The problem with this is that with Peyronies Disease, most of us want to get the treatment, experimental or not, and would not want to waste precious months receiving a sugar pill when irreversible changes might be taking place!

These are just a few observations...I'm really enjoying all of the discussions in the various forums, and it seems we have a great group of intelligent members here having informative discussions. If anyone has yet to post a profile or would like to give me some feedback on the questions I've posed in my own profile (roadblock), I would love to read more!

roadblock
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: j on December 19, 2005, 11:00:20 PM
All good points, roadblock. We're not in a position to do a scientifically valid study. I'd settle for just hearing from one guy who says "I was so bent I couldn't function, and I tried X for Y months, and now I'm able to function more or less normally again."

By the way, with regard to your questions about 'waisting' and ED, in my own case it seemed like I went through sort of a period of shock after the thing came on, and during that time, the plumbing did indeed seem to be not working like it used to. But after a few months that part of it went away, leaving just the bend. Some researchers say there's an inflammatory phase that resolves on its own. I do think there's a big pyschological factor as well, but once the 'shock' wears off, you may find as I did that you're still yourself, just... bent.  And being bent isn't a disaster, it just a matter of degree.
Title: Re: Note to j regarding improvement vs cure
Post by: Old Man on December 20, 2005, 11:23:22 AM
j:

I won't disagree with you on the point of "cure" vs improvement. Would like to say that since having had this mess since an early age, have gone through many phases of this works, this don't work, taking 12 VIs with no results, all of the pill routine and all to no avail.

I started off with a 45 degree curve to the right and 45 degrees downward at age 24. Nothing gave me any relief for many years until the VED came on the scene. As a last resort after a radical prostatectomy which left me impotent, I was prescribed the VED. My uro and I worked out a routine of exercises that gave me more relief from Peyronies Disease than any other thing tried.

It eliminated all the curve and restored my penis to its original configuration before Peyronies Disease. In fact I gained more dimensions. True, I have to use the VED on a regular basis to be able to have erections, but at the same time, it keeps the penis healthy and I have no visible signs of Peyronies Disease at the moment. Note that I say at the moment, because Peyronies Disease has occurred in life about 4 or 5 times since onset. At 76, I consider myself "almost cured" of Peyronies Disease. The last small indentation that was left has now gone away leaving the shaft in a straight shape, etc.

Again, I am not saying that the VED works for everyone, but I am living proof that it worked for me. Have worked with several others on this forum and off that have experienced great results from using the VED.

In addition, I do have Dupuytren's and Lederhose problems which are not of any major concern at the moment.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: SteveW on December 20, 2005, 03:29:20 PM
If I were personally paying the astronomical bills some of you guys are, I would be more skeptical and critical than I already am.  My VI office copay is $30, the drugs are costing me the usual $10 copay and the TV is a $30 copay.  So about $70 a month.  I must be better insured than I thought.  I can't imagine them keeping this up for much longer (I've had 7 VI's and 3 months on TV) if this is costing them over a grand a pop?
Title: stretching not possible?
Post by: j on December 20, 2005, 04:33:21 PM
Old Man,

I'm particularly interested to learn that you also have Dupuytren's/Lederhose symtpoms.  My skepticism about the VED comes from the often-repeated position of hand surgeons that Dupuytren's tissue simply cannot be stretched due to the cross-linkages of the collagen in this tissue.  My hand surgeon said simply "You can't win by stretching - it's been tried".  I've always accepted that as face value, and also assumed that Peyronie's tissue is essentially identical, plus being anchored in delicate surrounding tissue.

However, based on your story it would seem that some of those assumptions may turn out to be incorrect.  Maybe, for example, the VED successfully stretches the tissue surrounding the plaque, eventually compensating for the fibrotic area.  And I think there is some evidence that persistent, gentle stretching for long periods of time does in fact break or realign those collagen molecular bonds.

Remember the guy who used to post on the BSTC forum, who built his own traction device and wore it for hours at a time? He claimed it worked, and it seemed credible on the surface. I'd like to see him post here.




Title: Re: Comments relative correlation between Peyronies Disease and Dupuytren's
Post by: Old Man on December 20, 2005, 08:39:38 PM
j:

You are right about having concerns about the three disorders being related in some way. However, Dupuytren's symptoms are the attachment of the ligaments/leaders of the hand (similar to Lederhose in the feet) which causes the fingers to be contracted toward the palm. My ortho surgeon states he will operate only when the fingers draw all the way to the palm. He states his reason to be that there is no final "cure" for DC. It can reappear after surgery and I tend to believe him and will not have it done until he thinks it is necessary.

In regards to the relation between Peyronies Disease and DC symptoms, I believe there is quite a bit of difference between the two disorders. One is that there is no so called plaque condition present in DC as it is in Peyronies Disease. The same tissue exists, but in a different form. Peyronies Disease plaque/nodules tend to form in a straight line or bunched up condition. DC tends to be only a hard knot around the tendons, etc preventing them doing their job. However, my theory might be wrong as I am not a medically qualified person just what I have seen in my case.

My experience with the VED has been that the continual gentle stretching of the penile tissue also stretches the plaque/nodule tissue at the same rate. The repeated cycles of exercise, at least in my case, caused the symptoms to disappear and at present none exist.

IMHO, Peyronies Disease and DC are related, but have different characteristics of tissue even though it shares the same makeup. Thus, I believe different approaches to their treatment must be explored. No amount of stretching has cause my DC to be helped in any way whereas the VED has helped with Peyronies Disease.

Hope this helps in some way.

Sincerely, Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: j on December 21, 2005, 07:57:01 PM
Old Man,
Since you also have Dupuytren's you should check out a new technique called "needle aponevrotomy" which for most cases is a much better choice than conventional surgery. Based on my experience, your MD is being far too conservative in waiting until the finger is actually at the palm. If you have a contracture that's causing a problem, it can be released and the actual rate of recurrence after needle aponevrotomy, or a properly done surgery, is not that high. I had my first surgery 8 years ago and the 'fix' is as good as new.

Your ideas about stretchability of Peyronies Disease tissue are very interesting. I've consistently heard the term "cross-linked collagen" applied to all 3 of these disorders. But if Peyronies Disease tissue actually can be stretched without damage, then urologists are seriously remiss in dismissing VEDs and traction.  I suspect that the main reason MDs would not want to pursue these ideas is fear of litigation if a patient doesn't follow directions and damages himself.

In your opinion, how much time has to be spent daily with a VED to get any results?


Title: Re: j - Stretching Peyronies Disease scar tissue
Post by: Hawk on December 21, 2005, 10:42:19 PM
There is enough growing interest in VEDs by urologists that many are using them based on plausable rational.  This interest will soon result in some objective clinical trials

Dr. Levine uses VED along with VI in his practice.  He indicated that they will be a clinical study starting next year that may answer the effectiveness of VED's either alone or in combination therapy.

Brief quote from Dr. Levine, Ask the Doctor, peyroniesassoc.org
QuoteAll of these studies are anecdotal reports on a limited number of patients, with no objective measures of improvement and no placebo control.  It is my opinion that a vacuum device used properly may be able to apply mechanical forces to the penis to stretch the scar and possibly result in some straightening.

Other doctors in UK use them in combination with VI and surgery.  

Title: Re:Note to j and Hawk about VED usage
Post by: Old Man on December 21, 2005, 11:36:51 PM
Hawk: Thanks for the nice post relative growing interest in the VED by urologists. This is what I have been advocating for men for the past ten years or so. Some have availed themselves of the VED therapy and have had good results. Just got a PM from Marti and she states that their uros have posted a note relative Peyronies Disease therapy by VED on the ADPA forum.

j: I used varying amounts of time with the VED exercises/therapy for my Peyronies Disease. For the first week or so, I did two sessions of about 5 to 10 minutes a day. Then, did about 10 minutes twice a day for several weeks. Then after that, I did about 15 minutes a day for about 6 months until all the symptoms were gone. Today, I have no visible sign of Peyronies Disease symptoms, maybe a slight indentation on the left side when erect. Since I use the VED for erections for intercourse, it does not show when using the retainer ring(s) to hold up the erection.

In addition to the VED exercises, I used large dosages of vitamin E over the six months period. Also, had my blood monitored for toxicity during that time as a precautionary measure, etc.

Hope this answers your question.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: roadblock on December 29, 2005, 07:10:47 PM
Hey, just wondering if we could possibly revisit the creation of a topic for case studies in improvement/resolution of Peyronies Disease which was discussed above...if there are some out there I think many of us would love to read about them! We might even be able to see trends with regards to age, onset (traumatic vs insidious), symptoms and therapies and the course of the Peyronies Disease.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: golfballa on December 29, 2005, 08:19:41 PM
I have a couple questions, what angle would be too extreme for intercourse when the penis is angled downward and is it possible to develop peyronies in middle school.  When i was young me and my best friends lacked homophobia, and found it entertaining to show each other our erect penis and mine was always straight.  I wore tight fitting underwear at the time and would often feel discomfort to the point of pain from erections being restricted.  I think this is the cause of it.  I do not have any harded plaque however, but the first sign was over 5 years ago.
Title: Penis Shortening, Peyronies Disease and Lovers Reactions
Post by: Blondeguy on January 10, 2006, 09:48:23 PM
I was diagnosed with Peyronies Disease by a knowledgeable urologist in July 2005. I had done my research beforehand and was basically going to see him for a confirmation of the disease. My first signs started about 3 years ago - waisting (indentations) on my shaft were first. Then came a curvature to the right at the base which grew more and more severe as time went on. As soon as the indentations arrived my penis started to become noticeably shorter - which alarmed my wife alot. Over the next two years as the scarring progressed so did the shortening. My soon-to-be-ex wife complained last spring, "You no longer even look like the man I married." She did not seem to mind the curvatures or the indentations but the shortening was very upsetting to her psyche. So I'm curious - is penis shortening common with Peyronies Disease? My urologist stated it is as the tunica becomes scarred and less pliable. But I'd like to know: how common has this been with the guys (or husbands for the lady posters) here? Have your wives noticed or complained about this to you? Luckily, since my ex and I split up I have been blessed to find a very understanding gf who is great about all of this. But it sure was a sore spot in my previous marriage.
Thanks for your input,
Blonde
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Barry on January 10, 2006, 10:25:46 PM
Blondeguy,

I prefer not to comment on your ex-wife's words or actions but rather direct my post to your question about penile shortening. Yes, unfortunately the loss of both length and girth are more the norm then not. The amount lost is different from person to person.

On another more pleasant note, I am happy that you have found someone who cares for you enough to take you as you are. In that regard you are a lucky man. Thank you for sharing your story with us.   

Regards,
Barry
Title: Re: BlondeGuy
Post by: Hawk on January 10, 2006, 10:30:00 PM
Blondeguy

First, welcome to the forum, and thanks for becoming one of the growing ranks of indespensible members that support the forum by posting.

I lost about 1.2 inches (initially more with some regain of length for now) and I am about  a year into Peyronies Disease.  I have lost significant girth as well.  I have a substantial indentation at the underside of the base with a slight to moderate curve.  I think loss of size is very typical since Peyronies Disease reduces the ability of the tunica to stretch to its previous size.

As you have found out, it was not so much that your penis was lacking as it was that your wife was lacking that resulted in her comment..

PS: I am thankful to say that my lost length and a significant case of ED has never caused my wife to do anything but be supportive.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Blondeguy on January 10, 2006, 11:03:27 PM
Thanks guys. I was wondering about this. It does make sense due to the reduced pliability of the tunica. I've lost just over 2.5 inches - which percentagewise is alot considering I wasn't all that long to start with. LOL! Same girth thank goodness except for where the indents are. BTW I wasn't trying to dis my ex. She's having a mid-life crisis. I'm moving on with a wonderful woman.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Larry H on January 11, 2006, 10:15:48 AM
Blondeguy,

A very important message in your post to other men with Peyronies Disease is that there are many women out there who will accept us for who and what we are, and will accept our Peyronies Disease as part of the package. Thank you for your post, and I'm delighted that you have someone who supports you in your fight with Peyronie's.

My Best,

Larry
Title: Re: Apology to J for overlooking a question
Post by: Old Man on January 11, 2006, 11:00:50 AM
j:
Just went back through some of the older posts and realized that you asked me a question which I completely overlooked.

Sorry about that. You asked how long one should exercise daily with the VED to get good results.

The answer to that is there are no set times that works best. In my case, I started out with about 5 minutes each day two times, morning and evening. After a month, increased the twice daily routine to 10 to 15 minutes. Two months into the exercise cycles, I did 15 or more minutes once a day for about 4 months which was 6 months overall from the beginning to seeing most all of the symptoms disappearing. 

At the six months time frame, had only a slight hourglass indentation of the left side of the shaft. At present, there is very little sign of any Peyronies Disease left in the shaft. Whether or not the VED was the successful therapy or not, who knows, just know it worked for me.

Along with the above cycles, I took large dosages of vitamin E during that period. Now, I take only 400 I.U.s per day. This was recommended by my urologist after prostate cancer surgery in 1995. So, I guess that in my case things worked out all right for me.

Hope you don't hold it against me for missing your question. Good luck to you and if I can help further, let me know.

Sincerely, Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: j on January 11, 2006, 02:31:56 PM
OM, thanks for the detail. Sounds like more MDs are getting interested in VED and traction therapies.  I think I mentioned this  before, but some time ago I was very surprised to learn that Dupuytren's tissue can, apparently, be stretched  - but only by sustained traction. This company makes an appliance that does it:
http://www.handbiolab.com/digitwidget.html

I think the idea is that if a stretching force is applied steadily and for a long period of time, the cross-linked collagen matrix realigns itself as molecular bonds are slowly broken.  This might be what's happening with the VED, but with a traction device a force could be applied for hours on end.

Of course, as you continually point out with regard to the VED, one would have to be extremely careful about traction as damage could easily result. So for the record I DO NOT suggest that anyone try this on their own. But I'd very much like to see some MDs follow up on this possibility.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: youngpain21 on January 14, 2006, 04:24:18 PM
I am a first time poster here. I developed Peyronies Disease about 2 months ago, it seemed to occur quickly. I am only 21 years of age and it seems I have a pretty bad case of Peyronies Disease, but not in advanced stage yet at least. I have 3 rubber band like features around the entire shaft in 3 spots that is creating a waisting effect. There are no real hardned plaques, but I have probably a 25% bend to the left, and when I am partially erect an hourglass deformity. I have read that hourglass deformity with the multiple waistband like features that I have means the Peyronies Disease is worse than if there is just a plaque on one side. I am quite depressed, and wondering if my sex life will be ruined. My doctor wants me to only take vitamin E twice a day for 6 months and see him back, but I am concerned this will not do enough help. Does anyone have any suggestions for me? Does my being 21 give me any hope of recovery from this or does the hourglass deformity make it seem impossible that I could recover? Thanks in advance.
     
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: roadblock on January 15, 2006, 12:48:11 AM
Youngpain21,

   It's hard to believe but as you read all of the posts from all of the members, you will eventually see that urology has very little to offer the peyronie's patient. That means that it doesn't really matter what tests are run or how often they see you it won't matter because there are no medically-accepted therapies out there.
   However, you have come to the right place for support and pro-active discussion about Peyronies Disease. Welcome to the forum!
   The literature on Peyronies Disease does state that the younger you are, the more likely you are to experience a spontaneous remission. However, no one case will be exactly like the next. I'm 29 and my Peyronies Disease began with pain and eventually about a 15-20 degree lateral angulation. The pain is improving but still there. For a time I had some erectile dysfunction which I think was mostly a result of pain with erection and anxiety over the whole situation! I too had "waisting" in the semi-erect state, pretty bad at one point. It has completely resolved, currently...but Peyronies Disease seems to have the ability to do whatever it wants whenever it wants and you will see that as you read the posts here.
   There is no official medical advice on this site as none of us are functioning as medical professionals here but everyone has an opinion. My opinion is that many of the alternative treatments discussed on here have a place. My regimen:

Vitamin E (gamma) 400mg 3x a day (with food...vit e is lipid soluble)
Acetyl-L-carnitine 1g (1000mg) 2x a day
Lipoic acid 200mg 2x a day
B6 (pyridoxine) 200mg daily
L-arginine 5000mg daily split into three doses
Gotu Kola 1000mg of powdered herb in morning and afternoon; 2000mg at night
Bromelain 1000mg split into four doses on an empty stomach

   It's takes some effort to get all these pills in, but they all seem to have a role in the alternative treatment of Peyronies Disease...at the very least they fall into the category of "can't hurt". Be careful to not exceed recommended doses, even though I imagine with these substances these numbers are arbitrary.
   There are many members on here taking different things...get involved with posting and read what different people have to say as well because we are all working towards the same goal.
   Finally, remember that as bad as Peyronies Disease might seem, it is only a very small part of who we are as people. You might be walking around totally consumed with constant thoughts about the disease, but nobody else sees you that way. Keep your head up, learn about  the disease, begin some sensible treatments and stick with them because change can come quickly or very, very slowly...as in months or years.
   Good luck and welcome once again!

roadblock
Title: Re: Reply to Youngpain21
Post by: Larry H on January 15, 2006, 12:36:51 PM
Youngpain21,

It is true that there is much that is not known about Peyronie's Disease, both in and outside the medical community. As such Peyronies Disease patients have many different views of the disease and how best to treat it. Roadblock has given you one, and it is a view shared by others. I have a bit of a different view that I want to offer for your consideration. I want you to understand, as well as roadblock, that this in no way is meant as put down or challenge to what roadblock has written, but only a different view.

It's my opinion that every man who suffers with Peyronies Disease needs to be in the care of a urologist who is knowledgable and up to date in the treatment of the disease. There are many around the country who are, there many more who are not. Your doctor telling you to take vit. E twice a day and come back in six months makes me believe he/she is in the latter group.

There are treatment options that the top Peyronies Disease urologists employ with some reported success. It has been reported that Dr. Tom Lue at the Uni. of CA has used the drug Pentox with men in the early stages of Peyronies Disease, like yourself. Dr. Levine in Chicago and Dr. Mulhall at Cornell in New York use verapamil injections, although many, including myself have concern about the invasive nature of the treatment. Doctors are also starting to take a hard look at using the VED (Vacuum Erection Device), and many have reported excellent results with this therapy. A drug called AA4500 (collagenase) is in clinical trials now and shows promise.

You are in  the early stages of Peyronies Disease, the time when it can best be successfully treated, and you need to be in the hands of a urologists that has a solid background in treating Peyronies Disease. If you would like to send a quick note and tell us the general part of the country you live in perhaps we can recommend a good Peyronies Disease doc in your area. Again, the best time to treat Peyronies Disease is in the early stages. Read and learn all you can about the disease and the treatment options, find a good Peyronies Disease uro and get agressive with some form of treatment now.

That's my opinion, and I hope it is of some help.

My Best,

Larry
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: j on January 15, 2006, 05:33:51 PM
Youngpain21, Larry is right that because there are currently a lot of unanswered questions about Peyronies Disease, there are differing opinions on what to do. I'd like to add a couple of my own ideas here.

First, it would be very unusual to have Peyronies Disease at 21 so first make darn sure that's what you have.  Now that Peyronies Disease is getting better known I suspect some guys (and maybe MDs) are be jumping to the conclusion that if there's a  bend or a curve, it's Peyronie's Disease. But moderate curvature is normal and there other possible causes for more serious kinks or bends.

Second, a bend of 25 degrees is, in itself, nothing to be alarmed about and isn't a significant functional problem.  Somewhere around 45 degrees it gets a bit more awkward.

Third, while Larry is correct that several therapies are being tried - none have much of a track record at this point.  For each one, I've seen posters who say they've tried it without success.  So if you decide to try one, don't expect too much.

Fourth - if you really have Peyronies Disease is it worth going to a urologist? If your insurance will pay, and the urologist is actually interested in the condition and is staying up-to-date on developments, maybe yes.  If (like me) he just prescribes something that doesn't work, talks in generalities for 10 minutes and says "come back in 3 months"... why bother?

Fifth - research into fibrotic distorders is gathering steam, so just hang in there - better treatments are on the way.

All of the above are just my own opinions and might be contradicted by better-informed patients or by knowledgeable MDs.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: roadblock on January 15, 2006, 06:51:25 PM
I definitely agree a urologist should be part of the life of anyone with Peyronies Disease...if for nothing else for the future when he/she will be able to quickly write you a referral to a doc willing/able to treat Peyronies Disease when a new, novel  treatment becomes available. It isn't that these docs are unwilling to treat Peyronies Disease...it is just that with liability issues nowadays docs are unwilling to be aggressive with treatments. But, they certainly should be involved in the care of any patient with a urological concern.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: youngpain21 on January 16, 2006, 01:33:33 PM
I actually live in western Ohio. I read on a peyronie's site that there is a good doctor in NE Ohio at Case Western, but other than that I don't know. Anyone have any suggestions for this area?
   When it comes to my 25 or so degree bend to the left, that's not my real concern. My real concern is the hour glass deformity and lack of normal erection quality. The bend if it stays at this I can live with, the deformity and lack of erection, caused by the waisting effect, is very rough. I agree that my doctor saying 6 months of vitamin E and see him back is not a very good plan, I had thought the same thing myself. Thanks very much for all your responses, and I'm sure I'll be having more questions in the future.
Title: Re: To YoungPain - Urologists in Ohio
Post by: Hawk on January 16, 2006, 04:53:25 PM
Youngpain,

Here are two I have some word of mouth information on from other members.  I have heard enough about Levine that I would feel very comfortable with him.  There are some members on the forum that have used both.  Maybe they will comment.

Dr. Laurence Levine Chicago, IL
(312)563-5000

Dr. Allen D. Seftel, Case Western University
Cleveland OH
(216)844-7632
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: youngpain21 on January 23, 2006, 02:39:49 PM
A couple questions for those who may have had Peyronies Disease longer than myself. I have about a 25 or 30 degree curve to the left right now, and it has been progressing slightly more to the left for a couple months.. 2 months ago it was maybe 20 to 25. I was wondering, the people who get 80 or 90 degree curvatures, do they just progress slowly in this manner for lots of months or would it happen quicker normally? Any way I can try to slow the progress at all or help things? I certainly hope I can stabilize at a curvature where I am still able to function pretty well. Also, I have three separate rings around my shaft with a waisting effect and hour glass deformity when partially erect, not when fully erect. Some people say this waisting and hour glass efect proves that the Peyronies Disease is worse than a normal case, while others say its simply different and not worse, what do you think? Thanks!
        Aaron
Title: Upcoming AUA convention in Atlanta
Post by: phil on April 07, 2006, 10:22:41 PM
Is anyone planning on going to this conference?  Can a non-AUA member attend? 
Title: Naturally, non-Peyronies Disease curved penis. Please advise
Post by: leftie on April 26, 2006, 06:43:00 AM
Hello everyone

First of all let me apologise for posting in your forum - i do not have Peyronies Disease (so if you flame, kick and ban me I won't be offended). I do however have a penis that curves about 40 degrees to the left. I dont have the pain, plaque, scar tissue etc. associated with Peyronies Disease - only trouble having intercourse both mentally and physically. I have "googled" for who knows how long, and studied a lot, but I find it really hard to find good information about the subject. I can't believe how many websites simply state that having the a curved penis is the same as having Peyronies Disease - I know by now that is not the case. Some other websites just recommend that you learn to live with it ..

I am 27 years old, and I have had the problem as long back as I can remember. About 3 years ago I went to my doctor who told me that I didn't have Peyronies Disease, but that he'd still recommend an operation. I accepted and had the operation - it wasn't successful at all. Today my penis' shape is exactly the same as it was before the operation - except now I have a nasty scar to go with it. I have been considering undergoing another operation, since this is a subject that really gets to me. I have several times caught myself in unconciously keeping distance whenever a girl shows interest in me, and to be honest it is eating me up. But the thought of going through the uncomfort of another operation and not to mention the hell that awaits in the weeks after, doesn't exactly appeal to me. Especially because I know there is a chance it won't have any effect just like the last time. This has led me to look into alternative methods.

Now I know this is a forum for Peyronies Disease, but I was wondering if anyone here could give me some advice on what they would do in my situation? I have lurked a bit in this forum and read about some of the treatments for Peyronies Disease, but I am unsure about whether any of them would work on my non-Peyronies Disease curved penis (jelquing, vitamin-e, stretchers, VEDs etc. etc.). I have considered trying out the jes-extender, although i can see that people in here don't seem to like stretchers. Oh well enough of my ramblings, any input is appreaciated.

Thanks in advance

Leftie

PS. You guys REALLY need a list of abbreviations for newbies like me.
Title: Re: Leftie - Non-Peyronies Disease Curve
Post by: Hawk on April 26, 2006, 10:09:34 AM
Leftie,

If you have been lurking here you know we never flame people and a person has to put a lot of deliberate effort into getting banned.  I appreciate you graciously posting your plea for help over in the "Off Topic" area but I moved it here because functionally and psychologically, you face many of the same challenges as the rest of us.  It is also unlikely that you will find many serious forums to address your problem, so you are very welcome here.

I will let others comment but I offer just a couple thoughts.  First, while many may be willing to cut on a penis, If mine is ever cut on it will be only by one of the very few top penile surgeons on my Continent of residence.  I suggest that you have the same rule.  Next, since we battle scar tissue and you probably battle a natural shortness on one side made up of natural tunica and erectile tissue our methods may not be appropriate.  There is a site dealing with every non-Peyronies Disease aspect of penis make-up. it is http://www.thundersplace.com/  I have spent about 15 minutes there on 2 occasions and cannot vouch for much of what is there, but I feel that a rational person could sort through the worthless and find some useful information. Finally I caution you.  Hopefully this forum has taught you that a penis is a fragile organ that we often take for granted.  Be cautious about stretching or man-handling yourself too aggressively or you may fit into our discussions more than you ever want to.  ;)

You are welcome here.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on April 26, 2006, 01:12:18 PM
leftie:

Suggest that you do a Google search under the names of Chordee, Congenital curvature as well as the site Hawk posted below. I have visited that site and there is a lot of info dealing with a lot subjects. But, as Hawk says watch out for the bad information. Study any and all angles of what you want to do before making a decision to have further surgery. In most cases surgery can not be successfully reversed.

Sounds like that you may have suffered from congenital curvature. There are several good sites dealing with this condition, so do the search and study them well. I am sure that you will find much useful information there.

As Hawk says, never feel that you are intruding on the forum, as all here are only interested in helping each other as well as themselves. For instance, I am nearly 77 years old and have had a Peyronies Disease problem since the age of 24, so I know some of the feelings you have now. If I can help in any way, feel free to let me know.

Sincerely, Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: j on April 26, 2006, 10:18:27 PM
Leftie, give serious consideration to the idea that maybe 40 degrees is not in itself that big of a deal, or even terribly unusual.  I've had a bend to the left for a long time, probably since my 20s. In those days I just accepted it, not having any real point of reference or comparison. And it worked fine. I might have been initially a bit self-conscious about it but that tended to get forgotten pretty quick.

Today with the internet we're subjected to a toxic amount of information on everything under the sun. We can instantly compare ourselves to the rest of humanity along every possible axis, jump immediately on any real or imaginary health concern, and just generally drive ourselves nuts by knowing more than we ever needed to know.

Much later in life I developed Peyronies Disease which has given me a more serious upward bend. But that's another story.

I share the reservations of the previous posters about surgery. I've had 2 surgeries for Dupuytren's and today, I can express my position in 2 words: never again.  Surgeons sell surgery, and they often oversell.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: leftie on April 30, 2006, 04:12:32 PM
Thanks for the input guys it is warmly appreciated.

@ Hawk

Thank you for the warm welcome. I have lurked a bit on the forum you recommended, and my first impression is that it is mostly centered around enlargement rather than "un-bending" (in lack of a better word). I will however try and post on the forum to find out if anyone have experienced un-bending as a positive side effect of the enlargement method. I don't have a problem with size, and is really only interested in anti-curvation :-) True, I'll have to sort through the information - I'm beyond the days of: "well it said so on some webpage on the internet, so it must be true".

Yes, I think I will adopt your principle about only being operated on by the very best, should I decide to go through with another operation. I figure it is going to require some heavy research to find out who the very best are in Denmark, where I happen to be located.

@ Old Man

You must really have some experience with this subject, having dealt with it for so many years. How has it been emotionally to live with this problem for so many years? It feels great to get advice from someone with that kind of experience.

I have had trouble finding a more formal search query, than just "curved penis" - and you recommendation of searching on "congenital curvature" turned up a lot of sites I hadn't seen before. So thank you very much! As far as I can see that is what I have. As a side-note most of these sites actually recommend an operation as the solution to the problem. I would really wish I'd stumble across more material that said "do this easy thing for 3 months and your problem is gone!".

I can't recognize many of the chordee symtoms though (http://en.wikipedia.org/wiki/Chordee).

@ J

Believe me I have tried to convince myself, that it is not a problem - so far I've had little or no luck with that. I am unfortunately very self-concious about it and it has affected my sex and dating life all my life. I am a big believer in the human's ability to change our life's quality alone by changing the way we think. And I've had great successes in other areas of my life with this approach or life philosophy if you will. But this thing seems to be a demon that is not so easily killed.

I am also very sceptic about surgery (a side-effect of experiencing a non-successful operation). In Denmark we are so priviliged that we don't have to pay for this kind of surgery, only if we want to choose the doctor ourselves. But if I choose this option I will follow Hawk's advice, and find the best even if it is going to cost me.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: leftie on April 30, 2006, 05:30:50 PM
Just a little correction. I posted the following:

"..my first impression is that it is mostly centered around enlargement rather than 'un-bending' ".

I was a little fast there, actually the site has lots of forum threads about curvature.
Title: Re: Open Questions on Peyronies Disease/ Living with Peyronies Disease for a long time
Post by: Old Man on April 30, 2006, 06:07:38 PM
leftie:

Thanks for the vote of condidence. Yes, I have dealt with Peyronies Disease since the age of 24. It has taken quite a bit of blood, sweat and sometimes tears to cope with it. It was the worst mentally at age 24 when it had the most severe bend/curve and pain. It was and still is to some degree emotionally hard to deal with successfully. My complete history is posted elsewhere on the forum.

Have one item that I disagree with you on though. This forum is not just centered around penile enlargement. Its main focus is attempting to help others with this crazy mess called Peyronies Disease. If enlargement comes as a result of the things that are tried, then that would be a bonus. No offense taken with your comments, just wanted to put my two cents in about the real reason for our existence.

You might want to do a search engine for Peyronies Disease or Peyronies Disorder, Duputren's Contractures as well as the curved or bent penis sites. The Peyronies Disease and DC sites are intermingled with links to other sites that have good info that is very helpful.

My final two cents back up Hawk by stating that surgery in most cases should be the last resort. All other options must be persued first, then get a second opinion about surgery. In addition, penile implants have their place in the treatment of Peyronies Disease, but they also should be considered as the last resort. This surgery cannot be reversed as some others can, so choose wisely about any surgery.

I do volunteer counseling work about prostate cancer and Peyronies Disease in my home town with the American Cancer Society, so I see a lot of guys with ED, DC and Peyronies Disease problems.

Best to you, Old Man

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: leftie on May 16, 2006, 03:36:42 AM
Hello again people,

I need your help with a little more clarification. After I had surgery to try and fix my congenital curvature I realize now that I've actually developed some scar material on the right side of my shaft. The scaring is the exact place where the surgeon opened my penis and shortened my right chamber. I don't feel any pain or discomfort with the scaring, and it also has a soft texture. And I didn't have this scaring before the operation, so my questions are now:

1) Would this scaring be considered Peyronies Disease?

2) Since I didn't have this scaring before the operation wouldn't you agree, that it most likely has no effect on my curve?

3) If I've understood it correctly, the curvature when you have Peyronies Disease is caused by scaring on the inner side of the shaft - ie. on the left side in my case. But my scaring is on the right side. What do you make of that?

Thanks again for all your help

Leftie
Title: question to leftie
Post by: Joshua on May 16, 2006, 08:02:14 AM
Is the scar on the outside of the skin, a keloid type scar? If that is the case that would not be Peyronies Disease.

Joshua
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on May 16, 2006, 01:07:30 PM
As I understand it, you had a (congenital) curve to the left, and a plication on the right side to take a tuck in the tissue, and to thus pull the penis straight. If that is the case, then the surgical incision would have been on the right side, and the scar that you are telling us about is the residual markings of the incision, but should not be contributing to the curvature to the left. It is impossible to make an incision without leaving a scar, but this scar should not lead to problems, unless it *contracts* (ie shrinks down such that the penis cannot fully straighten out). That would be unusual for a scar on the skin (which is not the rate limiting part of erections). A keloid is simply a scar that contracts and heaps up with a spreading quality that is a form of abnormal wound healing.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: leftie on May 16, 2006, 03:16:29 PM
I just checked the wikipedia definition of keloid, and it doesn't look like that - it isn't on the outside. I have a normal 2-3 cm (just a vertical line) scar that shows where the penis was opened. But under that normal scar, I have some sort of lump (which is under the skin) - this is not a line but more of an oval shape that makes sort of a bump out on the penis. It is hard to tell whether it shrinks or contracts anything. The bump is not discolored in anyway it is the same color as the rest of the shaft.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: youngpain21 on May 19, 2006, 03:50:38 AM
I haven't posted in awhile but I am having a rough time. I am 22 years old and have Peyronies Disease. I first noticed it about 6 months ago. Just tonight I can feel another plaque starting on the left side of my shaft. It is definitely painful and it is really getting me emotionally just as much as physically. I have gone to Chicago to see Dr. Levine, who put me on Pentox and Cialis every other night to increase blood flow. My question is, other men with this disease, do you notice the penis being extremely flexible and able to bend in any way just past the plaques? I have several plaques in the midline of the shaft, and past that point I have a difficult time getting as hard an erection, and the penis seems to have a hinging effect. I have not had intercourse since this started, but I am scared to try it because of the hinging, I believe it will be very difficult. Dr. Levine seemed to think my Peyronies Disease was not in a terrible state, but I don't want to have no sex life all through my life, and I'm only 22 years old now. I can be stimulated, its not quite as easy as before, but its not too bad, but my biggest problem is the hinging and the fact that I believe this will make sex extremely difficult. Do you guys have similar problems? Thanks for any input.
Title: reply to youngpain
Post by: Joshua on May 19, 2006, 07:49:55 AM
I had a similar plaque build-up and and hinge effect and it did reverse. So hang in there and continue on with treatments. Are you utilising any alternative treatments as well?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on May 19, 2006, 12:29:53 PM
At your age, the difficulty getting an erection MAY be emotionally caused as much as physically. Not to blame you - I went through the same thing. I did not have a hinge effect, but I have found over the years that if I get hard, I can stay hard enough for intercourse. If that is truly not possible, the a reevaluation of blood flow is indicated, it seems to me.

You are young. More than one of us have had this for many years (I got it at your age and am now 51), and have been able to have a good sex life despite Peyronies Disease. Hang in there. Get going on therapy and do not imagine for one moment that this is how it will be forever.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ComeBacKid on May 19, 2006, 11:02:44 PM
youngpain21,

I'm 22 and have peyronies to, my penis is really shrinking.  I didnt know cialis and pentox increase bloodflow, perhaps Tim can comment on what these drugs actually do?  Cialis is like an ED treatment, but my phsyciatrist says you still need to stimulate yourself to get an erection, just taking like viagra won't just give you erections.  What is pentox and what can that do?

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: youngpain21 on May 22, 2006, 02:34:47 AM
ComeBackid,

I was told by my urologist that the Cialis is to increase night time erections and keep the blood moving, which in theory may prevent or slow plaque growth ( I still have plaques growing). The pentox increases the flow of blood through the body and increase tissue oxygen levels. I am planning to attempt to get an ionto set when i go back to the dr at the end of june.



Quote from: pudder135 on May 19, 2006, 11:02:44 PM
youngpain21,

I'm 22 and have peyronies to, my penis is really shrinking.  I didnt know cialis and pentox increase bloodflow, perhaps Tim can comment on what these drugs actually do?  Cialis is like an ED treatment, but my phsyciatrist says you still need to stimulate yourself to get an erection, just taking like viagra won't just give you erections.  What is pentox and what can that do?

ComeBackid
Title: Magnesium Sulfate
Post by: ComeBacKid on May 28, 2006, 12:47:32 AM
Has anyone here besides mark501 tried magneisum sulfate?  If I remember correctly in the Fitch study they claimed some results were shown with that and discounted them however, Mark has said he thinks hes seen results with magnesium sulfate, perhaps preventing the disease from progression more than anything else.  Is there any literature on this or has anyone tried this topical cream and had success?

ComeBackid
Title: Re: Orange
Post by: 899orange on June 11, 2006, 11:42:43 PM
What happened to the area of this site specializing in theory about cause of the disease? i was starting to read the last couple years.

  Anyway, does any one know anything about the Canadian treatment with ultra-sound? The website below talks about flying into toronto for a long weekend and 6 treatments[ the same procedure which they use to break up kidney stones.]

htttp://www.Painfree-eswt.com/

  I know that a little knowledge is a dangerous thing, and making efforts to treat myself may be futile, but  I am curious about the injury versus something wrong in your body in general [ not well expressed I know.] The doctors aren't getting anywhere. I have been able to improve  health problems in the past by eliminating problem foods for example.
Title: Re: Orange
Post by: Hawk on June 11, 2006, 11:52:29 PM
Orange,

Welcome to the forum and a special thanks for contributing to the forum by posting questions and comments.

We have a topic called "Causes of Peyronies Disease" but this forum is just reaching its first anniversary so when you mention "years" I am a bit confused

Click on our link for more info on shock wave therapy https://www.peyroniesforum.net/index.php/topic,27.0.html

Thanks again for being a contributor.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ComeBacKid on June 12, 2006, 07:51:48 AM
Orange,

Welcome to the forum, I hope you become a solid contributor here.

I expressed interest in that treatment earlier, I don't know of anyone on this forum who has had it done.  Yes it looks like you go to Toronto, and you get treatments over the course of a weekend, and a monday or tuesday.  The rumor is that it is good for calcified or harder plaques.  Seems funny the only place you can get it done is in Canada.  Perhaps you could do more research on it for now and post a report of what you've found out about it, its one of the areas that hasn't been talked about much or researched, or tried, the hot thing right now seems to be the VED's and a few of us are doing IONO treatments.

What treatments have you tried so far?

Several people have reported the Acetyl L Cartinine in stopping pain, and I believe it could help even more than this, the stuff is cheap and you can get it at Wal Mart - I take about 2 grams of the stuff per day and 800 IU's of vitamin E as well.

Scroll down the list of topics and youll find the ESWT topic that you can look under I think my post was the last one on there with no response.

Also if you get the chance click on the meet our members and our histories section and fill out your story about how you got Peyronies Disease etc.

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: kevin on June 13, 2006, 05:34:32 AM
I haven't priced Acetyl L Cartinine at Wal-Mart but I haven't found it to be cheap anywhere (in the high dosages we are looking for) unless you buy it in powder form as I do.  It adds a very sour taste to the beverage you mix it with, especially if it's plain water, but it sure saves money:  $8 for 100 grams, i.e., 1000 milligrams  X 100 doses, and it costs even less if multiple bags are ordered.

(Naturally, I will not publicize any vendor in a forum posting. However any individual who has searched and still not found a similarly cheap source of ALC, can always send me a private message; I'll then point you to where I buy mine.)
Title: Re:Kevin - Mentioning a vendors name on the forum
Post by: Hawk on June 13, 2006, 08:19:56 AM
Kevin,

I respect your personal decision not to mention a vendors name if you have some reason to set that guideline for yourself.  I just want to make it clear that the forum has no such rule.  I appreciate members shoping concern for our forum and being cautious of doing anything to disrupt it for themselves or others.  In the past we have had forums where impostors and shills abound or forums where you dare not breathe a word about a commercial enterprise or product.  Neither is not the case here.

I personally am not afraid of even an admitted company rep. posting here,and infact invite them to do so. They must refrain from spamming the forum and realize they may get direct questions, and skeptical but respectful remarks fired at them.  If we eliminate all that make a living from Peyronies Disease, we would have to tell urologists to stay away.

The threat to our forum is not vendors.  Direct questions addressing facts, studies, and evidence protect us from any threat.  Our two biggest dangers (in order) are; a lack of information, and shills that represent a company and pretend to be a satisfied customer.  Many members or guests cannot or will not PM a member for further information.

I personally have yet to find any vendor to beat Puritan Pride at www.puritan.com, especially when they have their better sales (they advertise inflated prices and ALWAYS have some sale running).  If anyone finds a quality vendor at a cheaper price, I want to know. 

If there are and questions or comments on this I hope they will be discussed because i think it is an important subject.


Title: Vendors
Post by: kevin on June 14, 2006, 03:36:41 AM
Like you, I have found that Puritan has some of the better prices out there in general (though they don't carry ALC as powder).  I've bought supplements from them in the past but currently Vitacost is the same or even cheaper, and that's without the need for any "Buy-two-and get-three-free"-type specials (and the headaches they cause when you try to calculate if the deal is good.)

FYI: Puritan, Nature's Bounty, Sundown, and the Vitamin World stores are all the same company now.  There may even be other companies in that group - those are just the ones I know about.  I've read that there are only about three "original" supplement manufacturers in the world and almost all the the retail brands (well-known names or not) are supplied by them.  We need to remember that fact before paying a lot extra for supposedly superior products.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on June 14, 2006, 12:57:54 PM
Hey im new here. Im 22 years old and think I might have Peyronies Disease. It all started when I took a stupid blood pressure drug called Ziac which is a mix between a low dose of beta blockers and duretics. I now know beta blockers can cause the condition. It turned out the blood pressure cuff they were using on my arm was too small for my arm which was making false high readings. Anyways so like a idiot I trusted the doctor and took the med that he claimed the only side effect was " some slight dizziness and frequent urination". Not only may it have cause my Peyronies Disease but also is causing my hair to fall out and increased body hair growth. I took the drug for almost two years, it was around the 16 month mark while on the drug that I noticed one night at a party I met this girl and we got into it and my erection was only like half full, she just zipped up my pants after that and kinda laughed and left 5 mins later. The next day I didnt think much of it because I had like 24-28 beers worth that night and know it can cause some erection problems. I started thinking though yea thats true but I drink that all the time and have hard erections still so somethings up. I quit the med and have been off it for almost 2 years now. What I have now are erections that dont get as hard as they use to but still are pretty hard and fine for sex. I do have a slight upwards curve and a small indent in the left side of penis. Now I know I have had the curve for at least 6 months, im not sure if Ive always had a curve or not though. I just recently thought its a realisitic possibilty that I may have Peyronies Disease, since then I have been closly examining my penis and thats when I noticed the little "dent". Im not sure if that has been there forever or what, its frustrating as I wish I could go back in time and check these things out,lol. When my penis is flacid it looks normal. Now recently I found something that is very concerning, I have this thin veinlike thing that runs up my penis from the middle of the base to about mid portion of penis. It looks like a vein, it even has a bluish tent sometimes, but this vein feels hard kinda. I have heard of "tendons" in Peyronies Disease, could this be it? I asked a friend and he said he had a hard vein like thing on his penis and said its normal, but im not sure. Its hard to find it, but I can see it when im erect. The head of my penis doesnt get tottally hard now, in fact thats my main erection problem. Only about half the head gets hard, besides that my erections are really fine. To make matters worst the blood pressure med has greatly lowered my libido, I dont know if this will ever come back or what. So in other words I dont get as many erections now because I dont get turned on really when I see a hot girl in the mall etc. Im thinking this is one of my main problems, my libido is low and im not getting a erection everyhour like I did before pre meds. I need to get a girlfriend so I can get erections throughout the day. I do notice when I talk to hot girls I get a pretty good erection sometimes, I think alot of it is my nerves as I try to get erections when I see hot girls now. Anyways if my condition was to stay as it is right now I could live a perfectly normal sex life as I dont even think any girl would notice the slight bend as its normal with alot of guys and my erections are pretty much rock hard. I am concerned that the dent area is getting bigger maybe and the curve is growing slowly. Im only 22 and if my dick gets worse I dont know what im going to do, everything is finally going good in my life and now im going bald and my dick is messing up all because of that stupid damn pill I took, its amazing really. I use to have extremely thick hair ( its still kinda thick) but its falling out rapidly and my temples are receding. Anyways I have learned some great things from this expereince, first off dont take most meds as they are toxic and almost all have a natural alternative that is as effective. I dont think I would have ever learned that without seeing this harmful side effects and digging up the dirt on the meds. I just wish I didnt have to learn the hard way by losing my hair and penis. Im taking 400 IU of E and the first 3 days I took it my erections were a good bit harder, but its been 7 days now and it seems things are back to normal. So could it be I just have a mild form of Peyronies Disease and it could go away or could stay the same? Im only 22, I just think I can heal eventually or something espically if I get alot of erections everyday. I also wanted to note that I dont get near as many morning erections as I did pre meds. Anyways if anyone can shed some light on my situation I would greatly appreciate it. Thanks
Title: Howcanthisbe Welcome!
Post by: ComeBacKid on June 14, 2006, 01:42:47 PM
howcanthisbe,

Yes it does sound like you have mild peyronies, the incomplete or not full erections are a side effect of the peyronies which is what I have as well. 

I got it at age 15 from getting hit in the penis with a soccer ball. I'm now 22 like you. However about a year and a half ago I may have made my disease worse by taking lexapro an anti depressant that stopped giving me erections throughtout the day, decreased my libido and bloodflow.  The effects of all these drugs and ones like you took are still in question, its best to stop taking the drug and move on, dont dwell on what you can't change.

What can you do about your condition now?  Stay educated and this forum is an excellent way for you to do this, and except the fact that your penis is different now.

Rather than focus on why you got it which you can't do now focus on what you can do to help your condition.

Your vitamin E is a good start, heres what I take:

800 IU's of vitamin E daily -from soy
2 grams of Acetyl L Carnitine- Taking pills in the morning and night both after food
I'm currently using TV from PDLabs with no visible results, I'd wait to see the results of our study before you decide on buying that expensive product

I plan to start IONOtophoresis treatments again soon and do it everyday.
I purchased a VEd which I will use with it just to give myself an erection once or twice a day, this helps keep the erectile tissue healthy and may help stretch out the plaque slowly over time.  These things must be used with extreme caution you don't go in and pump up your dick really big, if this is something you want to pursue I'd recomend talking to OLD Man.

There are many different other treatments out there so look around the forum and see what you think.  We have a great group of guys who are always willing to answer your questions and help guide you through this disease.

One pharmaceutical company is currently developing a new form of injections, and the stretching devices seem to be popular as of lately.

Weclome to the forum and don't hesitate to ask questions or make posts.

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on June 14, 2006, 04:14:46 PM
thanks for the reply. So you have had it since 15? Has it gotton any better at all? I still get full erections, only when im drunk is when my erection is half full or not as hard but still erect. When im not drunk I get plenty hard for intercourse, just not as hard as say a broomstick, but almost that hard. The head doesnt get hard really though, I noticed today when I was doing jumping jacks I got pain on the left side of my penis, almost where the indention is. I dont know why but the jump and spread legs motion makes that pain yet if I jump up and down fast and hard I dont get the pain. Man I hope this goes away eventually or stays the same, as I said right now im fine sexually.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Leopold on June 14, 2006, 07:37:05 PM
Do I have Peyronies Disease? I am 31 years old. Last week I developed a hardness several inches long and about a half an inch wide on the left side of my penis. It is always painful, and even more so when I have an erection. I get woken up several times through the night because of erections in my sleep and the pain. I haven't tried to achieve a full erection while awake because the pain is unbearable. Sex would be impossible right now because of this pain.  I notice on a partial erection the penis is bending towards the left side. The right side of my penis is normal it seems to be just the left side that has a problem. Like I said above this condition appeared suddenly and has not improved. I don't recall any injuries that might have caused this. I haven't had sex in about 2 months, so it was not a sexual injury either.
Title: Re: Leopold
Post by: ComeBacKid on June 14, 2006, 07:40:01 PM
Leopold,

Yes it sounds like you have peyronies, its in the early inflammatory stages which you can tell by the pain.

Acetyl L Carnitine 2 grams daily is good and I'd go with 800 IU's of vitamin E.

I would also try IONOtophoresis with the use of verapamil as that usually works better in earlier phases.  In my opinion waiting is dumb and lets the scar tissue harden and become even more irreversible.

ComeBackid
Title: Re: howcanthisbe
Post by: ComeBacKid on June 14, 2006, 07:48:09 PM
Howcanthisbe,

No it never got better on its own.  Right after injury the plaque stabilized and I had a less full erection but only slight loss of size in the flaccid state.  It seems like over time I've lost size very slowly, however in April I noticed a huge loss in size in both the flaccid and erect states.  This may have been due to me being on the anti depressant lexapro for a year or so , which kills your libido, spontaneous erections, and may have effected the bloodflow making the peyronies disease worse, I will never know if that was the cause or if it was natural progression.

In most cases it doesnt go away and I wouldn't recomend doing nothing, since your still in the early stages you have a better chance of getting rid of or dissolving the scar tissue, in my opinion and experience, the longer you wait the harder the scar tissue becomes and more it contracts.

I'd go with Acetyl L Carnitine 2 grams daily and 800 IU's of vitamin E daily just to get started, and if I were you I'd go with the IONOtophoresis treatments which are shown to get verapamil into the targeted tissue.

ComeBackid

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on June 14, 2006, 07:54:19 PM
but L argintine? Is that safe? Im taking 400 IU of E. I dont want to take higher doses in case my blood pressure is high. So what should I take? The dent in my penis is like a inch long around the side, will this eventually turn into a ring around the penis? Man this sucks, I dont wanna take anything thats not safe, is all that you mention safe? Thanks
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ComeBacKid on June 14, 2006, 08:37:10 PM
Howcanthisbe,

I didn't know you have high blood pressure, in this case you really need to consult a urologist, I would not recomend taking the vitamin E or Acetyl L Carnitine until you check with a urologist.

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: wantitstr8 on June 14, 2006, 09:17:42 PM
Leopold-

Before you begin any treatment, go to a Urologist (preferably an expert in Peyronies Disease or ED) and get an evaluation of your condition.  You can find referrals through a variety of websites.  Depending on where you are you can usually find someone within a couple hours drive.  You need to get your condition diagnosed, primarily to rule out other more complicated conditions before you begin a regimen of treatment.  Please note, you are not talking to Urologists here, I would take ANY medical advice, diagnosis, or treatment recommendations with a very large grain of salt. 

As for the guys on this board, I know I'm new here, but I think we should all avoid providing diagnoses, treatment plans, etc.  especially to guys who are new to the board and have not been evaluated by a physician.  I think it's fine to discuss potential treatments, personal regimens, or other issues surrounding this condition, however, to prescribe a treatment regimen to a new member, who has yet to be evaluated by a physician, is a little irresponsible.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on June 14, 2006, 09:29:56 PM
what if these treatments cause Peyronies Disease? Like vitiman E, since i started taking it I have a slight ache on left side of my penis. Could E cause Peyronies Disease?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: wantitstr8 on June 14, 2006, 09:48:54 PM
Howcanthisbe-

It is highly unlikely that Vitamin E causes Peyronies Disease.  All the medical evidence indicates either trauma or some other "unknown" cause.  Most likely, the other cause will be a dysfunction in the production or utilization of enzymes in the body...the inability to break down collagen and the accumulation of fibrous tissue.  I have Peyronies Disease...had it for about 8 months now...I also suffer from plantar fibromatosis.  Two faces of the same coin.  It sucks, but go see a Urologist, and get active in your own care.  This condition can be treated but you need to educate yourself, work with your physician, and be diligent in developing and utilizing a course of therapy.  Don't let this crap ruin your life.  It may not be curable, but it isn't a death sentence either.  Get to a good doctor...
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ComeBacKid on June 14, 2006, 10:10:53 PM
Howcanthisbe,

You've asked me if I think you have peyronies, I've provided you with my answers, but wantitstr8 is right you should see a urologist, the problem is most know nothing about peyronies, I found this out myself after visiting many in my area.  Some of the experts may require travel time or charge through the roof for a visit.  In the end you can find effective treatments here.  Assuming your perfectly healthy I'd recomend to a newcomer 800 IU's of vitamin E, and 2 grams of Acetyl L Cartinine daily, I'd also try out the IONO treatments with verapamil if I were you.  The IONO treatments are harmless as is the ACL, you said you have high blood pressure so you might want to check with a doctor or physician about taking high amounts of vitamin E if you already have high blood pressure.  In the end you have to research your condition and read through these boards but we are all here to help.  Anything you try is obviously at your own risk and you can take or not take my advice.  To be honest the only thing I think you have to gain from seeing a urologist is getting a penile ultra sound to track the plaque, and most won't even do this, I tried to get mine to and he rejected the idea, and as I said the experts can cost hundreds of dollars for an office visit.

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on June 15, 2006, 10:23:36 AM
Howcanthisbe:

You need to see a physician. Also, some of the things that you said suggest that there might be other reasons for ED, including alcohol intake (you describe a level of intake that is likely to lead to ED).

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on June 15, 2006, 05:21:03 PM
Does anyone think frequent erections is a big part of recovery? Today I got around 8 erections at work. Pretty good ones too, defienatly good enough for sex. Now of course during these erections they are ruined by my constant examination of the small dent and upward curve,lol. I notice when I get erect I can see the small dent but when I get really erect it goes away but the curve gets a little more upwards when im fully erect. I think good bloodflow to the penis is critical to recover, I noticed the last 2 nights I have woken up with good erections..... hopefully the vitiman E is doing something. It seems my head is starting to get bigger and more firm when I get really erect lately, so thats good news. I just think the reason I might have Peyronies Disease is because of the meds which lowered my libido and I didnt get no day time erections ever hardly. I think the lack of blood flow caused this. When im erect the only thing I can find that could be plaque is this vein looking thing running up the middle thats kinda hard unlike the other veins which are puffy and soft. Im scared this is the plaque. Anyways do you guys that frequent erections are needed for recovery? If I could find a girlfriend and be with her alot I could get alot of erections as I tend to get more when I talk to hot girls lately rather then looking at them for some reason. Yea I know my libido is still messed up from the meds, it really sucks but seems to be improving since I started taking Vit. E 400 IU. Anyways I dont mind the curve, in fact I think alot of girls will like the curve as its not a sharp curve at all, its a good bit less then the shape of a bananna. Its the dent that scares me as if it could start to grow, thats why im going to make sure I get at least like 6 erections a day and keep taking vit. E. Can anyone give me any insight on this? Thanks
Title: I wish
Post by: Liam on June 15, 2006, 06:29:32 PM
Quotethats why im going to make sure I get at least like 6 erections a day and keep taking vit. E. Can anyone give me any insight on this? Thanks


                                          I wish
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: wantitstr8 on June 15, 2006, 07:42:28 PM
6 boners a day and a regimen of viyamin E is not going to fix your condition.  Go see a Doctor, get a professional evaluation, and decide on a therapy (if you need one).  Nobody on this board can give you any valid insight into your condition until you have a medical diagnosis of what your condition is.  We all know it is embarrassing, distressing, and difficult to discuss this condition with anyone, but you really need to get evaluated by a professional
Title: Re: Howcanthisbe
Post by: ComeBacKid on June 15, 2006, 09:12:16 PM
You should go see your urologist.  However be prepared for them to simply tell you that you have peyronies and tell you to take vitamin E.  This is the diagnosis of most urologists.  Only the top urologists can really offer you a diagnosis with a quality plan of action.  Try to research and locate a urologist who specializes in Peyronies if you can, don't be embarrased just force yourself in.

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on June 15, 2006, 09:18:38 PM
thanks for the advice guys. I just dont know what to do, ive had it probably since I took the blood pressure meds six years ago and im fine as far as sex goes right now. I just read this info about vitiman E:

"Other research, however, suggests that applying Vitamin E to post surgical scars does not reduce the size, shape, or color of scars and can, in up to one third of patients, result in contact dermatitis, allergic reactions, or other irritation that can worsen a scar's appearance. (Source: Baumann, Dermatologic Surgery, 1999. Also: http://www.fitnessmagazine.com/fitness_and_health/052203_scars.jsp)

I just dont know whether I need to be taking E or not, since ive been taking it I have a slight ach in my left side of penis off and on where the small dent is..... it could be because imtouching the dent like every 10 mins to feel it but I dont know. I just dont wanna take something thats gonna make me worse when im fine right now. I know that sounds crazy but we all know much is not known about Peyronies Disease so whos to say that vitiman E cant aggreviate the plaque and make it grow more etc. Has anyone ever thought about this? Thanks
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: wantitstr8 on June 15, 2006, 10:03:34 PM
Howcanthisbe-

Topical application and oral ingestion of vitamin E are two completely different things.  There is no scientific evidence that taking vitamin E will worsen the plaque in Peyronies Disease.  Unfortunately, there is very little evidence that it is of any benefit either.  If you think vitamin E is worsening your condition, stop taking it and go see a Urologist.  I believe there are treatments that can minimize the damage caused by the plaque (pentox, arginine, in some cases Verapimil injections, VED's, traction devices, etc) but you need to know your status before you can make a good decision.  Some of these treatments have shown promise to halt the progression...trust me, you want to jump on this quickly.  Almost everyone that I have met (online or otherwise) who procrastinated with their treatment eventually regretted not addressing the problem sooner.

With all due respect, you seem to want to debate the efficacy of Vitamin E while your problem continues.  Nobody here can tell you what will make you worse or make you better.  Nobody here can say whether you have Peyronies Disease, Penile cancer, a thrombosed vein, or nothing at all.  Don't make the mistake of delaying treatment.  You can only make a good decision if you have a good fundamental base of information...that invariably starts with a good diagnosis.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Liam on June 15, 2006, 10:23:51 PM
QuoteI know that sounds crazy but we all know much is not known about Peyronies Disease so whos to say that vitiman E cant aggreviate the plaque and make it grow more etc. Has anyone ever thought about this? Thanks

There has been no evidence that I have personally seen.  I have not seen anyone on this board present evidence to that effect.  I have never seen nor heard any clinical evidence of vitamin E having a negative impact on Peyronies Disease.  

The paper you quoted referred to Vitamin E oil applied topically.  All of the problems they state are related to skin irritation.  Compared to oral dosage, it's apples and oranges.

Since it seems to bother you, don't take it (unless your doctor requires).  I've never heard of it helping anyone's Peyronies Disease.  So really, it is no big deal.  There are other supplements, prescriptions, and therapies which have been shown to be more effective.

Please consult your doctor!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on June 15, 2006, 11:24:54 PM
hey thanks everyone. Im sorry to keep asking questions. I have noticed that when taking E my erections seem a bit harder and easier to get plus my libido seems to be going up like it was before I took the blood pressure meds. Its just the slight ache and fact that everyone that takes vit E gets worse so I thought it could be possible vitiman E made things worse. I know its probably not making it worse, I think E is helping me out and all plus im getting more nighttime erections lately. I just am parinoid that I could create the condition when I was ok to begin with. Im gonna try to see a uro soon. Thanks for the kind support everyone, im gonna keep taking E and see what happens for now.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Leopold on June 16, 2006, 04:06:29 PM
I did a thorough inspection of my penis today in the soft state. The hardness is a huge area of my penis. It is a few inches long and almost wraps around the left side of my penis. A way to describe it is take a rubber hose cut it down the middle and attach it to one side of a pipe. That seems to be what this hardness is doing. From reading this site I see people with marble size hardness or pea size. Shi# I have a huge area of hardness. I just developed this problem last week and it has really messed up my penis. I am so depressed/shocked about this.   :(
Title: Re:Re: Leopold
Post by: Hawk on June 16, 2006, 04:35:29 PM
Leopold,

Welcome to the PDS, and a thanks for contributing by posting comments and questions. 

First, try not to panic.  You will be fine and make it through this.  In some ways your age could work in your favor.  In the immediate future there may be things that may help in addition the things you are doing.  you might consider asking your doctor to prescribe Pentox.  Here is a blip off of the PDS website.

QuotePentoxiphylline  (pentox or Trental) - Pentox has been used in humans in a variety of inflammatory and fibrotic conditions.  The mechanism is not fully understood; pentox blocks the transforming growth factor (TGF) B1- mediated pathway of inflammation, prevents deposition of collagen type 1, and acts as a nonspecific (PDE) inhibitor. pentox's observed suppression of collagen production in Peyronie's cells in tissue culture, as well as its efficacy in other fibrotic disorders, have resulted with it being offered to patients for treatment by a limited number of physicians.  Further studies will soon be completed but initial results seem to indicate that pentox is a useful treatment for Peyronie's disease.

You can't go wrong with an over the counter supplement known as Acetyl L-Carnitine (1000 mg 2 or 3 times per day)

L-Arginine is an amino acid supplement that is often taken at 2000 to 5000 mg per day

There are several other things like ibuprophen, application of mild heat that are low cost and can possibly help along with your urologist does.  Remember that 5 - 15 % of cases improve with no treatment and the pain goes away in virtually all cases within 24 months.

Stay calm, read and educate yourself.  The men and women here are the greatest support you could have by your side.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: SteveW on June 16, 2006, 07:52:44 PM
Quote from: Leopold on June 16, 2006, 04:06:29 PM
Shi# I have a huge area of hardness. I just developed this problem last week and it has really messed up my penis. I am so depressed/shocked about this.

Leopold,
It sounds like you and I have similar conditions.  My Peyronies Disease developed very, very rapidly virtually overnight.  My mass is a single, large plate running the length of my penis on the top side.  It is as wide as my unit at the base and then irregularly tapers to almost a point just behind my glans.  Much like the shape of an arrowhead.  The curve originally was 90 degrees and the wasting impacted the center one third or so, shrinking my girth (circumference) to right at 50%.  The VI may have helped since my curve is now at about a 70% curve and the wasting may be improved by maybe 10%.  I am stretching now.  I will see.

As for you...try not to freak out.  This is difficult, painful, embarrassing and seems to impact every area of our lives.  But your emotions, your feelings and your adjustment to this change will improve greatly as time goes on.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Leopold on June 16, 2006, 08:22:16 PM
Thanks for the replys, I plan on doing everything I can to fight this. I really appreciate havng this forum to read and share experiences.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: SteveW on June 16, 2006, 10:32:49 PM
Quote from: Leopold on June 16, 2006, 08:22:16 PM
Thanks for the replys, I plan on doing everything I can to fight this. I really appreciate havng this forum to read and share experiences.

And please...let us know what you encounter, learn or find that maybe, might just help.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on June 17, 2006, 12:14:05 AM
Ok this may sound crazy but since taking Vit. E a week ago my condition has greatly worsened. This might sound crazy and I have no proof of it. I first noticed a small dent, tiny before taking Vit E. Might I add this was when I first thought I had Peyronies Disease so I could have overlooked this small dent easily before I exmined sooo closly looking for dents. Ok this small dent has seemed to grow everyday since taking E. Now all of sudden tonight the small dent went to a big dent, its halfway around my penis and my whole front side of penis just feels kinda collapsed and it was hard to get a erection and even harder to maintain it! I couldnt believe it! Just all of a sudden, im in shock really and dont know what to do. Let me tell you why I think Vit E caused this. First off I first took the meds that caused this condition 4 years ago, I just realized 2 weeks ago my med caused Peyronies Disease then thats when I got worried. So in other words if I wasnt taking E then my dent would have grown right now at this time yet ive been fine for 4 years? Its too much of a cocidence I think. I mean listen to all the stories of people that take Vit E only to get worse, they just think its the natural progression of Peyronies Disease and vit. E cant stop it, but what if E is worsening of making it. Maybe E irrates the scar or the body builds the scar back stronger etc, I dont know how it could work. But im pretty sure if I didnt take E or think I had Peyronies Disease my penis would be fine right now, im stopping E tommorrow and see what happens..... I really hope tonight was a fluke or something.... because its getting scary now.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ComeBacKid on June 17, 2006, 12:50:08 AM
Howcanthisbe

Since most people would agree or argue vitamin E does nothing to help anyway, if you really think its making it worse quit taking it!  Then observe if it continues to worsen or not, I highly doubt the vitamin E is making your condition worse though, but just quit taking it then, there is not one scientific study that proves vitamin E does anything and it did nothing for me.

ComeBackid
Title: George Carlin
Post by: Liam on June 17, 2006, 08:58:53 AM
This thread reminds me of a George Carlin bit.  I have to paraphrase.  They found the cause of stomach cancer....... Saliva......... But, only when swallowed in small quantities over a long period of time.



Message......Correlation does not mean cause.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on June 17, 2006, 09:54:37 PM
Thanks ComeBackid, I ddint take it today and when I got a erection it looked alot better then yesterday, but I know it can change from day to day then go back. Anyways I have noticed that if I get a erection and ejaculate and then get a erection right after and ejactculate the dent is gone the after the first ejaculation and my penis looks 100% normal. Kinda weird but ive noticed this several times. Anyways a bit of good news, look what some girls have to say about having a curve:

http://www.hipforums.com/forums/archive/index.php/t-127126.html

I just hope my curve doesnt get too bad, mainly I just dont wanna get ED.
Title: Re: Liam - Thanks
Post by: Hawk on June 17, 2006, 11:30:15 PM
Liam,

I have been all over creation today, and I am about half sick and very tired, but I want to thank you for taking the time to help me out by actually changing the subject lines on your posts.  I try to change some for people, just for the good of the forum ,but some days I am just too whipped.  It is nice to see people put forth effort to help me in my efforts to  maintain a functional forum.

Thanks again
Title: Re: Howcanthisbe
Post by: ComeBacKid on June 17, 2006, 11:39:16 PM
Howcanthisbe,

I think your kind of panicing man and overanalyzing your penis, however I will admit this is normal and in fact I did it when I noticed my penis changing all of a sudden.  Don't worry about the vitamin E making it worse, I highly doubt it is doing that, just stop taking it for now.  I'd pick one treatment and just go with it faithfully and try to relax, your case could be a lot worse or you could be losing a lot of size like many of us.  Start with some kind of therapy like ACL or IONO and stick to that for awhile and see if it does anything.  You might try soaking in a warm bath I know for me this makes my dick grow and I think it is good to do this for bloodflow.  Hopefully help will be on the way soon from Auxillium.  ???

ComeBackid
Title: Changing Subject Line
Post by: Liam on June 18, 2006, 12:16:18 AM
I try to remember to change the subject line.  Often I have to edit using the "Modify".  It really helps when you go back through the posts to remember what someone says.  Just look for the subject line that matches the post.  WOW, what a concept. ;)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on June 18, 2006, 07:41:27 PM
I just realized something. Throughout at least the last 4 years I have gotton the "hourglass shape" while flacid like every 6 months. I remember about 2-3 years ago I got it bad for a few days. My flacid penis looked like it had a invisible rubber band on it that was really tight, it was really bad looking. Man im glad I didnt know about Peyronies Disease then or I would have been freaked out for sure,lol. Its interesting that I got that and it came and went, now in flacid state my penis looks 100% fine. When I got erect today my penis didnt look too bad, slight dent but nothing like it was 2 days ago. I hate waiting to see what it looks like when I get erect,lol. Its like all I think about all day. Anyways just thought I would pass that info along as its interesting to think it got that bad when flacid but now its normal.
Title: trying to remember to change the subject line
Post by: j on June 18, 2006, 09:01:28 PM
Hawk, Liam, I am actually trying to get in the habit too.
Title: What to do next
Post by: PDiddy on June 19, 2006, 01:18:35 PM
Hello everyone I'm new here and I have to say I'm very pleased to have found a site like this. I'm 36 and have had Peyronies Disease for almost six months now. Severe pain came on with BB sized lump so I went to uro and go the news. He put me on Potaba and Vit E then said to come back in a few months. My pain is much better but still flares up especially while getting an erection. The head bends to the left about 15 degrees so it's not too bad yet. I'm wondering if I'm not doing enough to try and beat this thing. I've read about other treatments but don't want to start mixing too many. Uro said potaba will give me bad diarrhea and upset stomach but I've rarely had an episode of this since I started taking it. I hate to just sit around and wait especially when everyone says the best chance for results are during the active stage. Is there anything else I should be doing to fight this thing or prevent it from spreading? Especially against the pain?
Title: PDiddy
Post by: Liam on June 19, 2006, 02:26:46 PM
PDiddy,

My favorite treatment is l-arginine.  It is easy to tolerate, easy to take, and has a chance of helping.  Read some of the back post.  Nobody here will recommend you take anything.  But, you can see what we are doing and have an idea of what all is out there as far as treatments.

My philosophy is to try anything not dangerous (subjective I know).

Good luck and welcome! :)

Liam
Title: Re: What to do next
Post by: Mick on June 19, 2006, 03:11:59 PM
pDiddie:

     I don't want to second-guess your uro, but after reading nothing good about potaba except for the results of their own study, and having heard that a number of uros were prescribing it, I asked my uro about it.  He said he never prescribes it because it simply doen't work.  Why, then, are uros prescribing it, I asked.  His reply was that it was the only drug "approved" by the FDA for the treatment of Peronies.  I can't say whether that's true or not.  Thought I'd let you know anyway, becasue I understand its side effects are very trying.  Anyone else have better info?

Mick
Title: pdiddy response
Post by: zigwyth on June 19, 2006, 05:14:17 PM
Welcome pdiddy to the Brotherhood. I agree. I probably wouldn't waste time on the potaba. Vit E can't hurt as long as you don't take too much. My recommendation is to try and find a Urologist in your area that specializes or has some knowledge with Peyronies Disease. There are many threads(posts) on all kind of treatments. Just keep reading. It would be irresponsible of members here to tell you what to do/take, especially if you haven't found a good Uro 1st. Expect many emotional states with this crap, but know we are going to beat this Peyronies Disease! Again, read as much as you can and you will probably safely arrive at what you feel is the best regimen and arsonal to attack this crap. Good Luck
Zig the Twig 8)
Title: my heads mashed
Post by: thebornless1 on June 19, 2006, 07:05:07 PM
hi all, been visiting the forum for a while now but don't think i've actually posted til now, i have completely mashed my head with things i've read about Peyronies Disease, i've had it for 6 months now and just need Some straight answers, the more i read the more stressed i'm getting with it.I would appreciate anyone helping me clear my head cos its really depressing me now.

when is the pain gonna stop?
how long before my penis starts to straighten again?
why does everyone seem to be taking treatment for this when my doc tells me there is nothing to treat it with?
does anyone get dry flaking skin on the glans with Peyronies Disease?
will i ever be able to have a normal sex life again?

i'm 34 years old and had a very healthy sex life now i can't even keep an erection because of the pain. when is it going to stop?

i appreciate everyone here is in the same boat or has been at some point, but i am struggling to cope with this.

thanks all.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: j on June 19, 2006, 07:13:08 PM
I can't answer all those questions, but I can say that the pain normally seems to go away after a few months to a year.  Iti did in my case.  I've never heard of anyone with Peyronies Disease for whom the pain didn't eventually go away.

Title: One bent mans opinion
Post by: SteveW on June 19, 2006, 07:46:29 PM
bornless1,
I am certainly NO doctor and anything I say is certainly my own opinion, founded only in personal experiences and reading and...the men on this site.

when is the pain gonna stop?
Generally, the pain fades as the "stabilization" of Peyronies Disease occurs.  All men, conditions and the time involved vary but it generally subsides.  Me for instance, it took about 4 months until I didn't dread the next hard on and at least six months before I was "pain free."  I have encountered short periods of pain again and that too seems to be normal.  The only thing I feel V Injections may have accomplished was a reduction in the pain level.

how long before my penis starts to straighten again?
Good question.  Sometimes this condition resolves itself.  In some cases, Verapamil works, pumping, stretching. topical Verapamil.  All goes back to "each man and his disease are different."  That is a large part I feel, of what makes this disease so incredibly difficult to research and treat.

why does everyone seem to be taking treatment for this when my doc tells me there is nothing to treat it with?  
It all depends on your individual condition and your own perseverance.  Many men have been to more than one and in some cases, numerous Dr's before any of them initiated any kind of treatment.  Many men on this site, (me included) are now trying experimental treatments, combining treatments and trying to come up with some action that is positive on our own.  That may be our real hope...that and driving our doctors (and the drug companies) nuts and virtually forcing them to action.

does anyone get dry flaking skin on the glans with Peyronies Disease?
That one is a new one I have not read or heard about.  Gentlemen?

will i ever be able to have a normal sex life again?
What is normal?  For anyone?  YES, you will probably learn to adapt and function with your Peyronies Disease.  I didn't notice if you stated anywhere (and I apologize if I missed the stats) how severe your Peyronies Disease is?  Degree of curve, wasting, ED problems etc.  That all predicates your ability to perform.  You are not alone.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Leopold on June 19, 2006, 07:58:50 PM
Not sure if this is related to Peyronies Disease or not but 8 days after I started taking Lexapro a anti depressant I developed Peyronies Disease. Anyone ever heard of a correlation between the two? I stopped taking the Lexapro about 4 days ago.
Title: Dry Flaking Skin
Post by: Liam on June 19, 2006, 08:06:49 PM
I've been reading about this on the internet and most of the sites linked these symptoms with a fungus or yeast infection.  In any case, I would get it checked out.  Yeast infection can become very very bad in a man.  Anything else it could be probably won't be fun either.  Better safe than sorry!!!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: SteveW on June 19, 2006, 08:43:57 PM
Quote from: Leopold on June 19, 2006, 07:58:50 PM
Not sure if this is related to Peyronies Disease or not but 8 days after I started taking Lexapro a anti depressant I developed Peyronies Disease. Anyone ever heard of a correlation between the two? I stopped taking the Lexapro about 4 days ago.

There's "no" medical proof, and I certainly qualify the statement, that "anti-depressants cause or contribute" to Peyronies Disease.  But the question and the sheer number of men asking this very question, makes one wonder.  Again, it's us, the guys with the condition having to do the research.  Might be a good anonymous question for our "poll" area???
Title: Depression and Peyronies Disease
Post by: Liam on June 19, 2006, 10:45:26 PM
The question could be posed, is there a link between depression and Peyronies Disease rather than the meds?  Or, another way to look at it, are Peyronies Disease, depression, Dupuytren's, etc. just symptoms of a syndrome yet to be identified?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: SteveW on June 19, 2006, 11:27:04 PM
Liam,
The perfect summation.
Title: Lexapro
Post by: ComeBacKid on June 19, 2006, 11:57:48 PM
I've had peyronies for 7 years.

I to went on lexapro partly because I was depressed from peyronies disease, and because of other reasons.  I was on the drug for about a year, and it really takes away all your daytime erections and makes you sleep a lot.  About one year after getting off of it, my peyronies got active again.  Has the lexapro permanently lessened the bloodflow to my member?  I never fully recovered back to the amount of spontaneous daytime erections I had before the drug either, some came back but not like they used to be.  I'm convinced the drug played some part in my peyronies worsening.  I believe the reduced bloodflow and lessened erections had a factor in my scar contracting even more.  I can't prove it but so often is the case with this disease its just something that I can sense and believe strongly.

ComeBackid
Title: Thebornless ?ss
Post by: zigwyth on June 20, 2006, 01:40:23 PM
I basically agree with everything Stevew stated. My pain went away after applying a prescribed cream Transdermal Verapamil. Took about 2 days. This could have been a coincidence because other than that, I don't believe it has helped otherwise. It will stabilize! Hitting this forum alot has helped me develop a regimen of treatments as well as helping me through the emotional distress. Be Proactive, don't give up and know that we will beat this crap!! Welcome and Good Luck! Zig the Twig
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: j on June 26, 2006, 02:41:40 PM
Yes there are a number of studies that show that Peyronie's can be cured - if you're willing to relocate. In Italy, ALC and hyperthermia have both cured Peyronie's. In Yugoslavia, ultrasound works. In Cuba, propolis does the trick. And so on.   For some mysterious reason, none of those things will work here in the U.S.  ;)



Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ComeBacKid on June 26, 2006, 05:31:37 PM
Oh yeah, and I think the country of Iran has produced a positive study on one of the devices or treatment methods as well.  You can probably get a free ride back to the USA on one of their nuclear missiles.

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: j on June 26, 2006, 06:56:12 PM
mark501 is right, though. At least some physicians in those countries are thinking creatively about the problem and actively trying to come up with something that works. Here in the US, where we have 100 times the number of doctors and vast amounts of money, it often seems that MDs are too often just a conduit for the big drug companies, and for conditions for which those companies don't have a product, our doctors have nothing to offer.  Apologies to any MDs reading this forum, I know that's an exaggeration.

Title: Malpractice
Post by: Liam on June 26, 2006, 07:37:27 PM
Docs are afraid to go out on a limb because of malpractice.  If there is not some validation for a treatment or med, you won't get it (with rare exception).  A doctor needs evidence that will hold up in court when s/he gets sued.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: j on June 26, 2006, 08:10:07 PM
You're right, of course, Liam.  I think we're at the point where more and more medical advances will come from countries other than the U.S.  The doctors in those countries are just as intelligent as ours, can get the same education, and aren't encumbered by fear of an out-of-control legal system.  And then there's the FDA - another whole subject.

So when we all start flying to Budapest (or Cairo, or Tehran) in 2010 for the latest Peyronie's treatment, we should wear something distinctive so we recognize each other. Maybe a pretzel on the lapel.



Title: Lariche Technique
Post by: ComeBacKid on June 26, 2006, 09:37:28 PM
We have the best universities in the world hands down, but people come from abroad and then head back to their home countries with our degrees.   Has anyone thought about going to europe for this technique?  Why can't US doctors learn how to do it?  I'm surprised Dr. Levine and Dr. Mulhall have not learned this technique or tried it, especially since Dr. Mulhall goes to europe.

ComeBackid
Title: Pretzel
Post by: Liam on June 26, 2006, 10:02:39 PM
J,

Or on the turban, depending on the country.  I've always wanted to see the pyramids.
Title: Dr Lue Book
Post by: Liam on June 27, 2006, 08:11:22 PM
Found this while surfing.  From Amazon.com

A Patient's Guide to Male Sexual Dysfunction
Tom F. Lue
Price: $16.95         or  Sign in to turn
on 1-Click ordering.
7 used and new from $14.95 


The index has Peyronies Disease listed.  I don't think there is anything new.  It was just interesting.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on June 27, 2006, 11:14:49 PM
Speaking as a doc, I think that we tend to be not so much conservative, as careful. Primum non nocere means "First, do no harm" and it counts. It may be true that foriegn docs are less constrained by regulations than we are here, but those regulations have largely served to protect patients.

I could "prescribe" heat therapy, but it like many other therapies are not yet proven. Even the iontophoresis that I am trying is not bearing out in larger studies yet - and this MAY be a result of less rigorous standards for how research is performed over-seas. And if that turns out to be true, then I am not helping myself. If I did it "for" someone else, then they are aout of money chasing a rainbow. It is hard to do that to patients, IMHO. It's why I equally hate the intellectual lethargy that leads one to recommend weak therapies like TV.

Tim
Title: Intellectual Lethargy
Post by: ComeBacKid on June 27, 2006, 11:29:30 PM
Tim,

Good points, and common sense should tell one that there would be other studies proving TV works, or PDLabs would release all the positive information they claim they've been gathering for years now, oh wait there is no positive data cause the drug doesn't work.  Or wait, maybe there would be people on the forum to say the drug works, PDLabs claimed that people who used it with success moved on, but I was on here before I started it and several others have PMed me claiming they started it while on here and its done nothing, just like its done nothing for me.  Wheres the common sense? 

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: j on June 27, 2006, 11:47:34 PM
Tim468, your points are well taken. But how would something like hyperthermia for Peyronie's ever become "proven" in our system? Who would pay for studies that would produce proof sufficient for doctors to start prescribing it? 

The problem of Dupuytren's contracture has been solved, for a majority of patients, by the technique of needle aponevrotomy. It was developed by some French MDs - rheumatologists, not hand surgeons - by creative thinking and careful experimentation. No large-scale studies, costing millions of dollars, were ever performed. Fortunately that therapy is now starting to find acceptance here in the U.S.   But on their own, I doubt that American hand surgeons would have come up with this simple alternative to conventional - and brutal - surgeries.

Pudder135 mentioned the so-called "Leriche" technique, a similar procedure for Peyronie's, attempting to perforate the fibrotic tissue with a needle-like implement until it can be stretched. I read that it actually worked pretty well on a small number of patients.

How, in our system, is it possible to follow up on promising ideas like these?

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on June 28, 2006, 11:22:40 AM
The answer is in generating studies with enough power to actually answer a question well. Let me give an example. If I give a drug that is likely to cut your blood pressure in HALF, then I do not need many patients to show it works (4-6 would do). That is because power is defined by the number of patients; the degree of change you desire to detect; and the the "standard deviation" of normal measurements. In short, the more variable a measure is under normal conditions, then the greater the number of patients that you need to study to show a drug effect, AND/OR, the smaller the difference that you expect to see (for your intervention), then the greater the number of patients that you need to study.

Thus, if I expect that 10- 20% of new Peyronies Disease spontaneously resolves, and 40% becomes static, and 40% gradually worsens, that would represent a large degree of variability in outcomes. If, OTOH, hyperthermia is likely to help only a portion of Peyronies Disease patients, or to only help a *little bit*, than I also need a lot of patients to have real "power" to my study. This is the crux of the problem in Peyronies Disease research, for no sinlge physician sees enough patients to generate any power.

Peyronies Disease resaearchers HAVE to start to collaborate, so that drugs that helpa LITTLE bit, can be truly studied effectively. We all want a cure, but I would take three drugs in combination if I thought that their combined effectiveness would add up for me.

But this is where docs are - they have SOME data that supports SOME therapies, but none of it is slam dunk, and any single one MIGHT help a patient. It boils down to keeping current with the literature (many do not seem to read at all!), and developing a willingness to KEEP ON TRYING!!! Taking care of Peyronies Disease should be like running a cardiac arrest - we give one drug and if it does not work we add another - we do not shrug and say "Bummer, PTOABA didn't work..." and STOP! This is the part about docs here that drives me nuts - the not following up, or attending to the urgency of this crisis in the life of their patient, ar even really *trying* to engage with the patient.

The answer to your questionns is:

A spirit of inquisitiveness; a willingness to read and try new therapies; a willingness to experiment with off-label drugs; and a desire to learn by performing blinded studies.

Hyperthermia could be studied (but not blinded) by giving it, or a control therapy of ultrasound, to patients randomly assigned one treatment or the other, using a patient population of about 2-300, brought together by at least ten centers agreeing to participate in a multi-center study protocol. It is not that hard - I am participating in 17 multicenter trials right now in my field. It just takes a will (and some of my  studies are of things like inhaled saline - NOT a money maker or supported by Pharma).

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: howcanthisbe on June 30, 2006, 11:52:28 PM
Heres some refreshing post to read about improvment:
http://wwww.biospecifics.com/forum/readThread.asp?forumID=14&threadID=3480


Link deactivated by Hawk: see the following post
Title: Re: HowCanThisBe - Statistics about Resolution
Post by: Hawk on July 01, 2006, 08:33:57 AM
HCTB,

I can imagine the concern and even obsessing that a man your age goes through dealing with Peyronies Disease.  I would caution you to have reasonable hope and a positive attitude based on accurate information because there is much to be optimistic about.

On the other hand, the thread you linked to with good intentions, has much unrealistic and totally false information.  Remarks like "50% resolve" or "Large numbers resolve and just don't post any more" are false.  The most rational statements made in that thread were by RZZ
QuoteAs far as the "Large percentage" of cases resolve, absolutely incorrect. Not true. All that know me know I've done tons pf research on Peyronies Disease and seen my share of urologist, including Dr. Levine. My research and the doctors I've spoken to all concur that the majority case of Peyronies Disease do not resolve themselves. 25 years ago it was thought that about 1/2 resolved themselves, 20 years ago that number was down to about 1/4. 10 years ago that number fell to 10%-15%. That number today depending on who you talk to is between 4%-8%.

The actual number of resolution is between 5% -15% and probably below the middle of that number.  Most do agree that youth is a factor and your chances are probably nearer the high end.  Probably another 25% - 40% never advance.  You also have the realistic hope that as we interest and educate more doctors, drug companies, politicians, and people in general that advances and possibly a cure will work its way down to you if your Peyronies Disease does not resolve on it's own.  Hopefully that will be true with many of us.

HCTB, stay calm, think positive, and educate yourself by absorbing all the accurate information you can.  Do not give in to snake oil and misinformation.  I deactivated that link because it promotes the misinformation we struggle to overcome.

Regards
Title: Re: Misinformation sites
Post by: Old Man on July 01, 2006, 11:06:19 AM
HCTB:

While I very deeply appreciate your position with regards to seeking help with Peyronies Disease, IMHO, have to support Hawk, (Admin) in his position about deleting the link in your post below.

After several years of participating on that forum by me and others on this forum, it degraded into only an avenue of release of filth, disturbing posts and in general just a pit of trouble for men seeking a good source of support. Even the sponsor of the site finally deleted many posts, but later failed to "clean up" the forum and get it back into a viable source of help. And today, it remains just as it was before we left there.

The above is not to say that there are some guys posting there who are not legitimate in their posts, they are. It just becomes very frustrating to post something worth while only to have it degraded into absolutely nothing by the crazies who lurk there for their own pleasure, etc.

So, stay with a good source of information and diligently seek sources of help that have your interest at heart and not for their own personal satisfaction of interfering with good information.

Regards and best to you, Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on July 02, 2006, 06:53:09 PM
thanks for the heads up you guys. I just dont wanna believe that me at 23 cant recover, I think its poissible I could recover. I dont know, but it sure is a hopeless feeling.... and one that I cant tell my friends. I keep thinking maybe God made me get this and a cure is very near and he wants to make me go through one of the worst things a guy could ever go through to make me stronger. Once the cure is out think how much stronger I will be, or if it resolves on its own. So is there any chance it could get better on its own? Thanks
Title: Re: VED at a young age.
Post by: Old Man on July 02, 2006, 10:20:16 PM
HCTB:

I am very familiar with the situation that you find yourself in at this time. You see, I too developed Peyronies Disease at the "ripe young age" of 24. (Now 76, almost 77 years old). It was caused by a bad sexual experience.
So, I have been coping with this mess for about 53 years now.

You just have to keep a positive attitude so that you can cope with Peyronies Disease. During those years, many and varied treatments were tried and none seemed to help. All kinds of therapy, drugs, vitamin E in quantity, potaba and other drugs did nothing. So, I just learned to live with my problem. After prostate cancer surgery I developed an exercise that got rid of almost all of my symptoms and today, there are hardly any left.

There are some treatments and/or therapy that can and will help some cases. It would only be fair to state that some go away on their own and others just resist any and all things done. So, keep the faith, try different things and just maybe you will find one that helps. A lot of us have been successful in getting rid of the stuff.

Let me know is there is anything that I can help with for you.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on July 03, 2006, 10:14:34 AM
Hey thanks old man. I cant believe you have had this thing for so long. Right now my curve actually seems to have lessoned over the last 2 weeks. Im not at all worried about the curve as it is far less of a curve then a bananna. In fact I wouldnt even be concerned right now if it wasnt for the dent area on the left side. Im really concerned because I think this could be spreading a little and perhaps will form a slight dent ring around the whole penis. Right now my erections are very solid and hard ( just not amazling rock hard).  So if I could stay as I am today I would be 95% normal. Im not sure if I have lost any size, it seems maybe I have though. The head of my penis doesnt getting tottally as hard as the rest of my penis too. I have had the condition for 4 years I suspect, as it started when I started taking the blood pressure meds. It was never getting any worse during those 4 years, but ever since I started thinking I had Peyronies Disease about 2 months ago it seemed to get worse,lol. So maybe stressing over it could make it worse? Anyways I admire you Old Man for struggling with this for so long, im sure it has made you a stronger person if nothing else. Im glad to hear you got your condition down to nearly no symptoms. The use of VED does work for some right? I will use that as my last resort if things start getting worse. Im glad to hear that things arnt set in stone with this crap, at least I will always know I have a slight chance of recovering or a decent chance of improving. The hardest part about this to me is it all could have been avoided if the doctor just told me theres a chance of sexual side effects when taking these meds. If he told me that I would have changed my diet in a heartbeat and never touched those meds. I just cant believe I was so sexually perfect libido and erection wise before the meds and now im all messed up. Just those little stupid pills have potentially ruined my life. I mean girls mean alot to me, its all I ever thought about and they always made me happy.Ive never even had a girlfriend really, Now im almost too scared to even find a girl to date, and im constantly checking my progress.... so hopeless feeling. Nothing ever bothers me, only something like this or cancer could. Im hoping I will stay the same or recover the some so I can look back on this experience as one that has made me 10x stronger in life, if I can beat this the only thing that can beat me is cancer, heart problems and death if you know what I mean because nothing else thats not life threatning besides blindness, paraylized, etc is worse then this. Anyways sorry to vent, thanks old man for the positive message. I always need to hear that I have a chance to get better or stablize. I feel for some reason if I get a good looking girlfriend that gives me more daily erections I could get better with all the increased blood flow. I wonder if drug induced Peyronies Disease acts diffrent then other forms of Peyronies Disease. Anyways thanks again.
Title: HCTB
Post by: Liam on July 03, 2006, 12:07:09 PM
HCTB,

Worrying about something is often worse than the thing you fear.  If you are 95% of perfect and this is all that has happened in 4 years, you are above the curve (pun intended) and are normal.  The only thing that can beat you, at this point, is yourself.
It seems that your fear is much worse than any possible reaction to meds.  Stop checking your penis.  Go out and live.

QuoteRight now my erections are very solid and hard ( just not amazling rock hard).

I hope you didn't mean it as such, but this is as insulting to members of this forum as anything I have ever read.  Guys here have real problems we are facing.  We are happy to answer a sincere question or engage in a real discussion.  But, I feel your issues have been properly addressed.  It seem as if you are taunting the members here with how
normal everything is for you.  I hope this is not the case.  If not, just take this as an indication of how good you have it

For girls try MYSPACE.


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on July 03, 2006, 12:41:40 PM
Laim, thanks for the help. Please understand I am certainly not taunting the members here. Im sorry to keep posting that I seem normal because im not really. Im just being really optimistic in my postings as im certainly not normal as I was before I took the meds, but like I said I still get good hard erections just not as hard before pre meds. Why I keep posting is because I think my condition could be worsening due to the dent on the left side that I just noticed a few months back. I know alot of people here have it way worse then me, but I do also realize I could be headed down that same road. I am sorry, I do realize I have vented a few times on this forum. I was just looking for some support and maybe some optimistic feedback which I did recieve. I think once I get a girlfriend and I perform fine I will be alot better. I am sorry if it seems im insulting anyone. Anyways thanks everyone for the support.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on July 03, 2006, 01:30:37 PM
Dear Liam,

Unless we chose to find other men willing to let us, we are mostly going to reference our erection quality with ourself only. Thus, if I were young and had pretty good erections after having had rock hard ones, I would be, frankly, terrified. It wouldn't much matter to me if some other guy had it worse, except for my empathic nature. I did not see that as taunting at all, but a sincere recounting of his sense of stabilization, but genuine concern at what is not yet back to normal (and may not ever get there).

Tim
Title: Re: Venting
Post by: Old Man on July 03, 2006, 02:34:57 PM
HCTB:

Appreciate your comments and kudos about my having had this mess for so long. I can understand your frustration at not being able to perform as you once did. It seems that just about every medication that is prescribed today contains sexual side effects or some side effects that are detrimental to one's sexaul or personal health. However, that is the cost we pay for getting help with medical situations.

I realize that you were only stating your own situation and meant nothing against others here. Having had prostate cancer, heart bypass surgery, a total hip replacement and many other operations in my life, I am thankful to the Lord for the health that I enjoy at my age of almost 77. Yet in spite to those operations, I feel like that I am just 25 on some days. One just has to put their problems behind them and perservere onward.

Thanks again for you kind words, keep the faith and something good will happen for you.

Regards, Old Man
Title: Thank you
Post by: Liam on July 03, 2006, 04:18:57 PM
HCTB,

Thank you for your sincere response.  I am heartened to know your posts are sincere.  The body of your posts led me to think otherwise.  I reread them.  I do understand, though, that written words often do not convey the spirit of the message.

The talk of symptoms coming and going in very short periods of time as well as the lack of plaque just doesn't sound like Peyronies Disease.  As far as losing hair on your head and increased body hair, that happened to me between 18 -22.  A bigger concern would be high blood pressure.  Are you sure that is no longer a problem?  Also, have you been checked for diabetes and heart disease?  Stress and depression should also be considered. My point is there are other things that could more easily cause the things you describe.  You really need to consult a qualified medical professional.  Tell him or her what is going on.  If everything you say is true, seeing a doctor is imperative, not just a good idea.  Positive attitudes are good.  But, you need science and an objective diagnosis. 

I do stand by the first paragraph of my previous post.  Please take it to heart.  It is good advice.  Enjoy your life.

Thanks Again!
Liam
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on July 03, 2006, 06:39:19 PM
Thanks all for understanding, I guess we all look  at in diffrent prospectives. Liam I think I have located my plaque though, its a vein looking thing that is kinda hard, I only really notice it when im erect. Its not a vein because it feels kinda hard, it runs from the base to head of penis almost. I know for a fact the blood pressure meds messed up my erections and my libido. Im pretty sure I have Peyronies Disease, but anyways thanks for your understanding on my situation. I dont mean to keep filling up the forum with my post,lol. Anyways good luck to everyone and have a great 4th.
Title: HCTB Mondor's Phlebitis
Post by: Liam on July 03, 2006, 07:02:54 PM
Quoteits a vein looking thing that is kinda hard

Please investigate Mondor's phlebitis of the penis.  It's rare, but, the symptoms match very well.  It is important to see about this.  Unchecked, it has the potential for nasty stuff.  I'll try to find a link and post it.  Meantime, Google Mondor's and penis.  You should get some hits.


Title: Mondor's Phlebitis Link
Post by: Liam on July 03, 2006, 07:07:37 PM
http://www.med.unipi.it/agp/us/ultra/US6.HTM  - Sonographic Diagnosis


Here is a Pub Med abstract.

QuoteMondor's disease of the penis.

Kraus S, Ludecke G, Weidner W.

Department of Urology, Medical School, Justus Liebig University Giessen, Germany.

Mondor's disease of the penis has been reported after genital trauma such as stretching and torsion of the veins and can cause endothelial necrosis and thrombosis. We report a 35-year-old male with thrombosis of the penile superficial dorsal vein who did not respond to topical drug therapy. Surgical management, e.g. superficial vein resection, is the most effective therapy in refractory cases for relieving pain, diminishing skin induration and producing esthetically pleasing results. Copyright 2000 S. Karger AG, Basel

Publication Types:
Case Reports

PMID: 10810272 [PubMed - indexed for MEDLINE]
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on July 03, 2006, 09:47:44 PM
I saw about that, I think I have Peyronies Disease though. The small dent can only be Peyronies Disease from what I have read.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on July 03, 2006, 10:14:45 PM
I dont think I have Mondor's disease because it says the dorsal vein which is the big one running up the penis on the belly side of it right? My vein like thing is on the top right side of the penis, runs from the base up.... I actually have two other small vein looking things also on each side of the bigger one. They look just like veins for sure, but when I feel them they are hard feeling kinda. I first thought for sure they were veins, but then realized they couldnt be that hard. Im sorry, im not trying to  get a diagonis here for sure as I know no one can tell, im just explaining why I think I have Peyronies Disease instead of Mondor's disease. Anyways have a good night everyone.
Title: Hard Veins
Post by: Liam on July 03, 2006, 10:26:21 PM
Having had sterile phlebitis twice, once in each arm, veins can get as hard as concrete.  But you are right about no one here knowing.  Only a doctor can tell you for sure.  Happy Fourth of July!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on July 03, 2006, 10:30:30 PM
Laim, thanks for the reply. I just read the superficial veins become cordlike.  Any idea where those veins are located? Thanks
Title: Hard Veins
Post by: Liam on July 03, 2006, 10:44:01 PM
All references I've seen refer to the superficial dorsal vein.

There is another condition known as a varicocele.  Here is a link to a Dr explaining it.

http://www.askphysicians.com/cgi-local/forums.cgi?display=thread&id=6429&forum=62&interface=0

Now you can see why I urgently encourage you to go see a urologist.  Please.

Liam
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on July 03, 2006, 11:05:11 PM
Thanks Liam, I will try to set up a appointment asap, I just dont have a car right now and no insurance. Im getting a car in like 2 weeks though, thats when I will go. Thanks again.
Title: Dr Appt
Post by: Liam on July 03, 2006, 11:08:58 PM
GREAT!   Good Luck!!!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Umbrage on July 09, 2006, 05:42:41 AM
Gentlemen,

I wish to diagnose a problem with my penis, but have had an extremely difficult time in doing so on my own. I'd appreciate any help you'd be willing to offer. I'll do my best to describe the problem.

I am 22 years old and have had a curvature in my penis ever since I can remember evaluating my erection (roughly age 14 or 15). The penis curves "perfectly" upward during erection. It is perhaps a 20-35 degree curve (how do you measure this accurately, by the way?). For a symbolic representation of my penis, I think a banana would be best. After doing some reading, it seems as if this would be congenital curvature as opposed to Peyronie's, since I cannot remember it just appearing, nor can I specifically remember trauma. I also have no pain during ejaculation or at any other time.

I am skeptical of it being congenital, however. There are a few reasons for this, and I'll do my best to explain them.

At the base of my penis is a long lump of soft, spongy tissue that protrudes roughly 1\6th of an inch from the rest of the penis skin. While fully flaccid, the lump is smaller and somewhat hard to notice; when erect, it elongates and is quite noticeable. The lump reminds me of a thick noodle under the skin, including the softness of a noodle. It begins from the left-side of the base and extends straight up the shaft roughly 1.5 inches, and then makes a complete turn back toward the base. The resulting shape is that of a shepherd's crook. This lump strikes me as highly unusual. I've never seen one like it on other penises, and I've done a lot of browsing. It should be noted that there is no pain associated with this lump. It doesn't hurt to prod it, pinch it gently, or manipulate it in any sensible fashion.

Another thing that happens is what I've heard called "hinging". That is, my penis bends very easily while erect. It's very strong when attempting to bend it downward, leftward, or rightward--almost zero pliability. However, when attempting to bend it upward (in the direction of the curve), it gives in with almost no effort. The harder my erection, the less apt it is to bend, but it will still bend rather readily. During a half erection, I can literally fold my penis in half, if I bend it upward and fold it over. This does not strike me as a congenital curve, but I am no expert. Is such hinging a symptom of congenital curvature or Peyronie's?

I have concerns about maintaining erections. My erections seem to fade too quickly. I've never been with a woman, and so this fading of an erection may be due to insufficient sensory stimulation. Yet, given the aforementioned symptoms, I think more than likely it is a real issue and not merely a lack of stimuli.

The length of my penis seems fine. It hasn't shrunk over the years. It has, in fact, grown over the years, topping out at around 19 or 20 years of age. The girth, too, seems to have remained completely stable. This seems to lean toward congenital curvature.

I'd like to note that I have been kicked in the testicles and the penis as a child and a young man. I figure this has happened to many young boys from fighting and general rough-housing. I note this because it is possible, I think, that I received trauma unbeknownst to me at a prepubescent age or during early teen years. The scarring process could have started then and resolved itself during the early years of my puberty. I probably wasn't knowledgeable enough to understand what was happening, and so I wouldn't have noticed anything unusual.

I know I'll probably have to eventually see a urologist, but I have read some amazingly intelligent posts here and figure you gentlemen will be able to give me a decent diagnosis. Does it seem like congenital curvature, Peyronie's, or something else? I thank everyone for reading this necessarily lengthy post.
Title: Re: Urologist appointment
Post by: Old Man on July 09, 2006, 09:31:40 AM
Umbrage:

I would stronly urge you at this point to seek professional help from a real good urologist who is experienced in Peyronies Disease treatment.

When calling for an appointment ask if the doctor has had Peyronies Disease patients and if he/she is experienced with its treatment.

The upward curve is normal in guys, but being able to bend it easily when erect suggest something that is not normal. Most all men have some form of curve and this should only be of minor conern. However, if you have any abnormality along with the curve, then you need medical assistance for a diagnosis.

So, bottom line, get an appointment at your earliest convenience.

Regards, Old Man
Title: Umbrage
Post by: Liam on July 09, 2006, 10:32:24 AM
I, too, strongly urge you too see a urologist.  If it takes a while to get an appointment, see a family doctor.  I think you should get a diagnosis quickly and if it turns out to be Peyronies Disease, find a qualified urologist.
Title: Have had peyronies forever
Post by: Disposable Strategies on July 09, 2006, 01:06:15 PM
Hi, everyone. I'm new to this forum. I am a 20 year-old college student with Peyronies. The thing is, for me, I never suddenly experienced a curve when erect- I've had a curve in my erection for as long as i can remember. I do have the tell tale signs of peyronies (hard lumps), but I've read that most people on here developed peyronies at a certain point in their lives.  I was just wondering what this might mean.  I'm open to any and all comments. Thanks. -Disposable
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: j on July 09, 2006, 03:24:12 PM
I'm not a doctor but I really question whether you guys in your early 20s have Peyronie's - it typically hits in the 50s.  A moderate banana-like curve is perfectly normal and I had one at that age too. An upward bend of 25 degrees is nothing to worry about.  As far as lumps and so forth, this is a part of the body where the 'works' are  close to the surface, with thin elastic tissue over them, and you can feel all sorts of structure in there if you try.  I don't mean to dismiss your concerns but before you tie yourselves in psychological knots, go to an MD and you may very well walk out of his door with nothing to worry about.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ComeBacKid on July 09, 2006, 03:36:00 PM
J,

I was diagnosed by two urologists with peyronies. If you have a bend, you at least have congenital curvature, but you probably have peyronies, not every case of peyronies has a lump or smal area of plaque, there is no standard case, if you have a bend you probably have peyronies.

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Umbrage on July 09, 2006, 06:19:51 PM
Yes, I realize I'll have to see a urologist. I don't look forward to it, but I plan on setting up an appointment with my GP tomorrow.

To J:

I know that Peyronies is more apt to affect older men. I'm not sure why, but I venture it has something to do with their penises being less hardy (aging body and all) and therefore more prone to trauma during sex. Though I also know many times the cause is completely unknown, so my theory is probably not very accurate.

Anyway, Peyronies CAN affect men my age. It's been reported in teenagers as young as 15 or 16, or so I've read. It's unusual but possible.

I wouldn't be too upset with the curvature if not for the hinging effect. I think this makes me much more prone to injury, because the penis simply isn't as stable. I also wonder about being forced to limit positions during sex due to the penis' lack of stability. After the research I've done, I don't think my curvature alone will signficantly affect sex. Yet, as Old Man said, it does seem fundamentally wrong that my penis bends as it does.

I'll let you guys know what my GP/urologist says, though.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: j on July 09, 2006, 06:56:41 PM
umbrage, that's the 'trauma' theory and I think it explains some cases but definitely not all.  Much research and information-gathering has been done in an attempt to prove or disprove a link between Dupuytren's Contracture and trauma to the hands. This research was mainly motivated by the filing of workmen's compensation claims. No solid statistical link was found. Here's an interesting paper:

http://pmj.bmjjournals.com/cgi/content/full/81/957/425

Note that right at the top, it says that "A genetic susceptibility to the disease is the only generally agreed aetiological factor."   

I developed Dupuytren's in my late 40s for no obvious reason. The hand surgeon said that was a bit early and told me matter-of-factly that because I had an agressive case, Peyronie's was likely to follow.  He was right. 

What is the definition of "Peyronie's Disease" anyway? A better term, which is also used, is "penile fibrosis".  If you have an injury, and scar tissue forms and causes a bend or a hinge, do you have "Peyronie's Disease"?  Sure, if you want to call it that,  and I think that's how the term is becoming used today. Someday when it's well understood we may have a differentiation of terms reflecting the various causes of this fibrosis.
Title: Umbrage - Not looking forward to the exam.
Post by: Hawk on July 09, 2006, 07:11:23 PM
Just to share a thought.  I often hear men say they put off seeing doctors or they do not look forward to the exam.  It may be an age thing, or maybe just an individual thing, but I am in my mid 50's and for at least several years, I have not had one whit of hesitation to see a doctor about any body part.  Maybe my prostate surgery did it, who knows.  Soon after prostate surgery my nurse with the NY attitude had  barked at me . "You are not going anywhere until you can bathe yourself, but I had a nurse's aid who was a sweet order black woman offer to take me in the shower and scrub me head to foot while I still had 2 hemovacs a catheter, and an IV. It was glorious.  It was like it brought me back to the land of the living and I felt no embarrassment even when my tough nurse came in and yelled in the shower that "we don't usually provide private geisha girls here" (while my sister sat out in my room laughing).  My nurses aide told her to leave us alone I would be out shortly.  I hugged that dear lady before I left the hospital. 

On my first visit with Dr Mulhall for ED, his nurse and my wife sat in a room and watched me inject my penis with bimix.  She gave me moment by moment instruction "don't hit that surface vein, don't twist your penis, pull it straight out".  She came back after the bimix kicked in and said, well stand up and open your robe and let me take a look at how we did."  There I stood while the nurse and my wife assessed my erection.  Before I get dressed I told her. " Jen, I would like to really thank you because this is about as close to kinky sex as I have ever experienced".  We laughed, I got dressed and drove home.

Prim and proper young ladies have to usually go see male doctors, lie spread eagle with their feet in stirrups while they get probed.  So, a male or female doc examines your penis.  Please focus on making him do his job.  I don't say this in any disrespectful way, I just want you to relax and focus on your list of questions for the doctor, and every word the doctor says.  Be matter of fact, flop it out, and demand answers and a competent exam..
Title: Re: Embarassment in seeing physicians
Post by: Old Man on July 09, 2006, 10:29:24 PM
Note to backup Hawk's post below:

I think that it was the prostate cancer surgery for me that relieved me of my apprehension of being examined by a lady uro/doctor. After my male uro retired, he turned me over to his able assistant, the lady uro. She had considerable experience with Peyronies Disease in a VA hospital and my regular uro thought she would be good for me since I had Peyronies Disease from the age of 24.

It only took about two or three visits to her to convince me that she knew her stuff and that I was in good hands. She is responsible for helping me develop the Peyronies Disease exercise routine that did away with my Peyronies Disease.

To this date, many years later, when I go in for my annual PSA checkup, she meets me with a hug and a kiss on the cheek! There are some doctors that just have a very good "bedside manner" and others could care less about their patients personal well being, etc.

Anyway, being embarassed about being touched by the opposite sex in a medical way should not cause any problem. Most of the time the situation helps with the final outcome of your treatment.

Just a few ramblings thoughts about the subject.

Old Man
Title: No More Shyness
Post by: Liam on July 09, 2006, 11:33:10 PM
Biopsies up the behind, catheters, sponge baths, suppositories, feeling knots in the penis and sitting on a toilet with the big D while throwing up and holding my incision (maybe the worst I have felt in my life) with the 11th floor nursing staff looking on is enough to cure anyone of feeling embarrassed.

My family doctor told me one time as I winced at the digital rectal exam, " I don't know why your complaining.  I'm the one with the bad end of this job."
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Lunchbox on July 10, 2006, 03:39:45 PM
I wasnt sure what thread to ask this, so I figured the open thread would be best.  I first noticed my Peyronies Disease 3 years ago while taking an extremely long dosage of Levaquin (which I think may be related, but thats another topic).  I started off with three plauqes.  after two years all three went away and I was left with a 45 degree bend.  A year ago another small one showed up that caused a dent.  At this time I have a difficult time locating the latest plauqe even thought the dent remains.  Instead there is what feels like a hard vein.  It starts at the midline of the shaft and travels right into the middle of the dent.  The "vein" feels very hard when erect, but is barley noticable when flacid.  I causes no pain or discomfort.  My question is this.  Could this be a new plauqe?  Or possibly a thrombosed vein?  It has remained unchanged for 7 weeks now.  The funny thing is that 3 years ago my penis looked like a bicycle grip and I wasnt worried a fraction as much as I am now.  Funny how researching something on the internet will scare the crap out of you.
Title: Thrombosed vein
Post by: Liam on July 10, 2006, 04:18:55 PM
Look back to my post on July 3 regrding Mondors and varicocele.  It's worth getting it checked.  It is treatable.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Lunchbox on July 10, 2006, 05:08:15 PM
Thanks for the reply Liam, I will look into that.  I also wondered how many Peyronies Disease patients have recurring plaques in different locations.  I am not reffering to plaques that seem to remiss, then reappear.  Rather new plauques that form after others have gone.  Do most men have a single episode of Peyronies Disease where the plaque(s) resolve and they never have more plauqes form?  I realize that even after the plauqe is gone there is damage done that may not be reversible.  But is there end in sight?  I can live with the bent-up dented mess I have now.  But what are the chances of more and more plauqes forming as the years go by?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Hawk on July 10, 2006, 05:40:11 PM
Lunchbox,

I have a response to your question and to an earlier comment.  Out of 14 men polled that had a 1 year stabization of plaque, 9 experiencer re-activation of Peyronies Disease within 5 years.  https://www.peyroniesforum.net/index.php/topic,244.0.html 

I think it is safe to say that if the disease reactivates its activation is not confined to a mature stable plaque getting a new lesion on old scar tissue.  Peyronies Disease when active is a spreading process of scar tissue over-running healthy tissue.

Quote from: Lunchbox on July 10, 2006, 03:39:45 PM
while taking an extremely long dosage of Levaquin (which I think may be related, but thats another topic).  I started off with three plauqes. 

Levaquin is a fluoroquinolone. As such if anything it should reduce fibrotic activity not cause it.  Here is a brief quote from an anti-scariing document on our "Resource Library" Fluoroquinolones permit a less invasive means for treating a patient susceptible to scar tissue formation or related pathologies... Anti-fibrotic activity of specific fluoroquinolones, ciprofloxacin and ofloxacin, have been substantiated through extensive in vitro testing on mammalian fibroblast cell lines. Optimization is ongoing.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Lunchbox on July 10, 2006, 05:56:38 PM
Thanks for the response Hawk.  Regarding the quinolone family of antibiotics; it is not the medications ability to reduce or inhibit the growth of scar tissue that prompts to say it may have played a role in my case.  It is the drugs ability to reduce the elasticity of connective tissue.  The drug could have made me more susceptible to injury, then the scar tissue could have formed after I stopped taking it.  The only reason I find it plausible is that they happened around the same time (taking levaquin and Peyronies Disease).  I go into more detail on a post under the "Causes of Peyronies Disease" thread.
Title: Re: Lunchbox
Post by: Hawk on July 10, 2006, 06:24:41 PM
Interesting point.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on July 10, 2006, 07:38:50 PM
old man, in your post below you said you "did away" with Peyronies. Do you mean your peyronies is gone now? I wanted to know because im concerned maybe the dents from Peyronies Disease are permanent? Ive really been examining myself lately and have noticed I have a slight dent area all around my penis almost yet you cannot see it at any time during erection except for on left side. But I have I think a very slight "hinge". I wanted to know is it possible for this hinge to go away on its own or with treatment. If anyone can answer this I would be grateful. I havent given up hope, I think we can beat this thing. One more thing, you claim old man you have cured or near cured your Peyronies Disease, but yet some of your post you say you are totally impotent. You are impotent from Peyronies Disease or something else? Im saying would you have been impotent anyways from another cause or was it Peyronies Disease? Thanks
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on July 10, 2006, 08:18:48 PM
I do think Rico has a point. He said he had a injury that got worse the more he dwelled over it. If I have Peyronies Disease for sure I have had it now for almost 4 years. The only things that I noticed was a slight upward bend, erection wasnt quite as hard and the head of the penis didnt get as hard as it should have. Now lets say I had it for those near 4 years, if I did it was stable the whole time or maybe even getting slightly better. Now in the last 1-2 months since I have been obsessed with it sense I thought I have it I have a small dent and a slight "hinge effect". Now it seems to keep getting worse slowly as the dent seems to be spreading maybe but im not sure. My point is it was stable for almost 4 years, now in the last 2 months since ive been obsessing over it has gotton worse. It could be its active again, but I seriously doubt it. Its funny it happens right when im worrying about it. Now I really think its critical for me to get a girlfriend and have her accept this thing so I wont worry so much about it. Lets think about it, the mind is so powerful. we could be worrying about it and...... maybe our mind already thinks we have it now and reconizes it and it becomes reality and gets worse.. I know this sounds crazy but people can move stuff with thier mind, and yes some people can really do it. We dont even fully understand the brain, it could be doing all sorts of things. I really believe thinking its getting worse makes it worse. I found a trend a few years back when I was trying to gain muscle. When I thought I was losing muscle I did, when I thought I was getting bigger I did. Im telling you, theres some truth to this. Im going to start thinking positive and just realize if it gets too bad there are always some options to make it better. Im telling you since ive been obsessing over it my condition has worsened for sure. Anyone have any thoughts on this? Thanks
Title: Cipro
Post by: Liam on July 10, 2006, 10:09:25 PM
Lunchbox,

I had sterile phlebitis is my arm from an IV.  I was told to apply heat and was given Cipro.  Curious, huh.

HCTB,

While I do not believe in Psychokinesis ( http://en.wikipedia.org/wiki/Psychokinesis ), I do recognize the brain (meaning the physical organ) is capable of many wonderful things.  Even if we assume the "mind' could move objects, that would be on the bottom of the list of the things the mind could do.  The hands can move things.  No, I believe the closest thing to a "super" natural ability we, as humans, have is rational thought.

Positive thinking is only beneficial when it leads to positive action. 

I was a body builder.  When I first realized and believed I could get big, I started going to the gym.  I got big.  The thought and belief preceeded the action.  But, without the action, I would have remained a "98 lb weakling". 

How does this relate to Peyronies Disease?  We should all take action.  We should study, learn and apply the knowlege we have.  Get a real diagnosis.  Focus on real, testable science.  Have positive thoughts and do positive, rational things.
Title: Coincidence, evidence, logic,
Post by: Hawk on July 10, 2006, 10:45:34 PM
We can all segment our lives into thousands of things we were doing before we got Peyronies Disease, or before it got worse.  We struggle so hard to simplify the mystery of Peyronies Disease  into concepts we can get a grasp on.  We make cause and effect from coincidence with absolutely no pattern of evidence and no reproducible effects.

This does not mean don't think out of the box or try sensible options.  It means we must all remember that the strides made and those that will be made, will be made based on rational scientific evidence, not superstition, anecdotal evidence, coincidence, or faulty thought processes.

We need to embed this information in our minds until drawing on it is second nature.

http://www.peyroniessociety.org/evaluating.htm
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on July 11, 2006, 10:30:00 AM
Catching up...

Be careful in extrapolating in vitor effects, or even case reports to all of our own physiology. For instance, infections cause increased levels of activity of anabolic agents (called eicosinoids) in the blood that should lead to increased muscle growth. But they also cause increases in other eicosenoids that lead to muschle degradation (cataolism) and the NET effect is one of degradation (why our muscles waste with chronic disease)(this is just an example of something I have studied in my research career).

So we need to be cautious in attributing cause and effect - quinolones could easily cause increased scarring through the mechanisms discussed, or decreased scarring directly - either hypothesis is easily argued. More interesting is that two members here have discussed an apparnet association.

Old Man developed impotence from his prostatectomy. One with such neurogenic impotence can achieve an erection with a VED or an injection (ouch!). But It doesn't matter whether his erections are caused by excitement or a VED - they are straighter by report.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Lunchbox on July 11, 2006, 10:52:18 AM
Tim and Hawk,

   I agree with both of you.  It is difficult if not impossible to say that one cuase is mutually exclusive to the effect resulting in Peyronies Disease for any one specific case, much less all cases.  I personally believe that several variables need to be in place for one to come down with a noticable case of Peyronies Disease.  I say noticable because I think that many men suffer from Peyronies Disease, but with such mild cases that they never realize it.  Genetic predisposition, diet, smoking habits, level of sexual activity, condition of prostate, auto-immune conditions, and on and on.  I think a combination of numerous things could determine weather a person suffers from Peyronies Disease.  I dont think that levaquin or cipro alone could cause Peyronies Disease.  I was stupid enough to take levaquin for 52 straight days.  My fault for not realizing I was only supposed to take it for 10 and the refills were only there incase it flared up again.  I also had tendon damage in my elbows and heels from it.  So the levaquin, coupled with the new girl friend (now fiance) that I was having rough sex with 4 times a day may have been what set my case off.  Or they could be totally unrelated, who knows.  All I know is that I have inured my penis several times before.  Once so badly that it was swollen 5 fold and bruised with no signs of Peyronies Disease.   
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ComeBacKid on July 12, 2006, 12:13:27 AM
Does anyone notice their penis bent very noticeably when semi erect, but as they become more erect it straightens out more and becomes just about straight?  When my erect penis is bent the sides are rock hard, yet my penis still becomes straight, I'm very curious to see what Dr. Mulhall has to say. For me it seems that my tunica is contracting and becoming hard, and bloodflow seems to relax it and soften it.  I'm wondering if pentox will increase bloodflow enough to do this, any thoughts?

ComeBackid
Title: Re: ComeBackid
Post by: Hawk on July 12, 2006, 12:24:15 AM
None, except when you see Dr. Mulhall, have your questions written out and give him a copy so he knows how many you have and stays until the list is finished.
Title: List
Post by: Liam on July 12, 2006, 12:43:21 AM
I had a Dr. tease me about my list looking like the "Dead Sea Scrolls".  He did admit it was a good idea. :)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: BLBC on July 15, 2006, 03:21:29 PM
Thank you so very much for an outstanding site. While I have looked at a few Peyronies Disease sites, this one is by far the most informative and professional. I appreciate all that I have learned over the last couple of days. Because of you my husband and I have been more able to discuss his recently diagnosed Peyronies Disease.

I find all of you men (and the women too) absolutely wonderful so hugs to you all!

While reading about a heart condition and treatment of a friend my husband asked a question:

Some times while performing angioplasty a surgeon will place a stent/stint (to continue to help the plaque in the artery from continuing to grow toward closure of the artery). While I understand that plaque causes the bend in a penis, would a type of stent help with straightening a penis?

To me it seams illogical as catheters can be a cause of Peyronies Disease and I think it would be an irritant. To him it seams logical. Any thoughts?

Also is "plaque" scar tissue as in adhesions or as in build up in an artery or on teeth. Simplistic examples, I understand, I'm just trying to grasp this. 

Title: Dealing with peyronies plaque / collagen issues / arterial plaque
Post by: George999 on July 15, 2006, 04:12:00 PM
Hello BLBC,

In regard to your question about plaque, I think it might help to understand that plaque is actually a generic term like cement.  And like cement, it can be made of all different kinds of components.  Clearly the cement you use on your model airplane is very different than the cement you use to build the foundation of your house.  But what they have in common is that they start out as a semi liquid and then become hard.  In a similar way, plaque is an amalgam of various biological components that meld together in the body and become obstructive or obnoxious.   And while inflamation is a common theme in the development of most plaques, the various forms all have their unique characteristics.  For example, dental plaque is very different from vascular plaque, but both can harden and become calcified and damage both teeth and arteries.  I have found Wikipedia ( http://www.wikipedia.org ) to be a great resource for understanding some of these terms, including Peyronies itself.  I think that once your husband understands more about the structures of the penis and how they are affected by peyronies disease, it will become obvious to him why a 'stent' is not the ideal solution.  There are however, surgical proceedures which involve a 'stent-like' approach (actually a prosthesis).  These are normally used as a last resort when more conservative measures have failed.  The function of an artery is very straight forward, it is simply a pipe to carry blood, the function of a penis is extremely more complex and demanding.  Thus, an artery is far easier to 'stent' than a penis.  Hope this is helpful and I wish you and your husband the very best!  He is very fortunate to have a caring and understanding wife.  I am thankful as well for a wife who has been very supportive and understanding.  That is something that no amount of money can buy!
Title: Plaque
Post by: Liam on July 15, 2006, 04:19:06 PM
Awesome explanation, George. 

BLBC,

One other source is on the website.  Under "The Disease" find "Glossery".  There is a great illustration there.

We are all happy you and your hubby are here :).
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: BLBC on July 15, 2006, 04:52:38 PM
I think I may understand, realize the only thing I have to reference with regards to my own experience is adhesions in my knee. I heal too quickly, after ACL (knee) surgery adhesions formed in my knee that needed to be forcefully broken up on a couple of occasions. Yes, I realize that the knee is a joint and is meant to bend and therefore forceful manipulation is effective whereas this is not possible in a penis (ouch and O so wrong).

I think this may be a visualizing thang. I am see plaque as scar tissue and my husband is seeing it as "build up" (arteries, teeth)  for lack of a better term. I believe I understand a bit better now although I must admit my head is reeling with possibilities and ideas. Ya'll really do need a women's advocacy group to take this main stream and I will do all that I can.

There is a company that is cutting edge and working on cloning cartledge and replacing healthy cell in knees to regenerate it. It is in use now (I met a gal who has had this done) and they have several other medical breakthroughs one dealing with scar tissue. Some others that affect 3 to 4 thousand patients a year.... Come on we all know there are many more Peyronies Disease sufferers than that! I will be contacting them to see if they are currently looking into Peyronies Disease and let them know of the need. After reading their web site it appears (to me) that they may be interested.... We'll see

OK for giggles (because if you don't laugh your just gonna cry) I liken Peyronies Disease to my snatch (sorry for being so blunt, but that's the way it goes with me) being suddenly glued shut. Shudders in an ohh so wrong way!  Women would not sit quietly and accept this so I refuse to sit quietly and accept what this is doing to my husband physically and mentally!
Title: Re:BLBC
Post by: Hawk on July 15, 2006, 05:28:45 PM
Here is a link that Liam referred to.  You will find much more information on our Website and you can go there any time with just one click on the PDS WEBSITE button near the top of all forum pages. 

The direct link to a good image is http://www.peyroniessociety.org/glossary.htm
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on July 15, 2006, 05:48:12 PM
I think that "placque" is a bit of a misnomer. I think that "scar" is closer to reality.

The issues with Peyronies Disease are that the development of a non-stretchable tissue where one is supposed to have stretchiness can develop in slightly different ways. for many, there is a *transformation* of smooth muscle cells that are involved in the abilty of the penis to do it's "turtle" thing (wherein it shrinks) INO fibrotic cells that contract gradually to a shorter length. Myocyte (muscle cell) becomes what is termed a "myofibrocyte", or "fibrocyte". fibrotic type cells are commonly found in scars and other organs that are fibrosing - fibrosis is a response to injury.

As part of wound healing, think of an accelerator and brakes in a car. Fibrosis may be part of the initial wound response, but as the wound heals, the fibrotic cells are supposed to go away and disappear. A failure to stop fibrosing (lack of a turn-off switch), or failure to stop *being* (the cells naturally die out and this is called "apoptosis"- a failure to undergo apoptosis may also be part of the problem).

Thus, too much fibrosis (accelerator to the floor) coupled with failure to remodel and heal (brakes don't work either) means that the formation of a "scar" goes ahead unfettered by any biological restraint. It is very probable that the "wounds" that cause Peyronies Disease are happening to every single male every single day, but their wound healing is not off-kilter, and so the natural response runs it's course without ever forming a contracted scar of any sort.

Finally, some of the placque may represent *transformed* tissue - that means that normal cells are replaced by scar tissue. so not only does the tissue not stretch, if you cut it out, there is a left-over dent where it was where the normal tissue is no longer present. This is a different concept than, say, a placque in the artery that might seem to be able to be "reamed out", eaving virgin tissue behind. that is why something to place into the defect is important for surgeons who remove scarred tissue - the placque is not laid on top of the normal penile structures - it replaces it.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Barry on July 15, 2006, 06:03:27 PM
BLBC,
Firstly,welcome to the site and forum. We are always pleased when another Lady joins our ranks. Your perspective from a female point of view gives us all a greater insight of how the gals are dealing with Peyronies Disease. I would like to suggest that you get together with Christine and say hi. She is a great gal, a dear friend, and a soulful contributor to the PDS.

On another note, I have spoken to a urologist and my cardiologist asking your very question about stents added to the penis  as a sort of treatment, ( I have three). To make two long stories short, both doctors concurred that because the coporus cavernosa is elastic, a stent would be a medical/surgical impossibility.

Also, I love your analogy about your "snatch" (no sorries necessary) slamming shut. I must admit that I too have pondered similar thoughts. What an equally dreadful dilemma to that of a man having Peyronies Disease.

Regards,
Barry   
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Blink on July 15, 2006, 06:17:25 PM
BLBC , it is a wonderful thing to have women on board! Many men with peyronies probably think this is "their" disease, not realizing the effect it is having on their mates. Welcome, Welcome, Welcome!!!  I read that you are going to contact someone to see what kind of research that they may be doing that could effect peyronies disease. Please let them know that they will have plenty of willing participants, should they want to do a study. We are all looking for that cure, and many of us would gladly help to find it. Thanks again for your interest in " our " disease. Keep the Faith, Blink
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: BLBC on July 15, 2006, 06:20:59 PM
Hawk, Thank you so very much, I am aware of the website portion of this site. It is where I started my "education" it is very well put together, you should be very proud of this site!

Tim, I have read your posts with eagerness, and this one has helped me to understand the plaque/scar tissue better.

I must admit I do enjoy reading the research studies. My brain is able to pick them apart very well as I have an analytical brain (except for spelling, so sorry!). I have always been fascinated with picking apart most anything to see how it works weather it be law medicine or a physical object, I do however stay away from anything connected to a gasoline engine! LOL!

I so thank you all for taking the time to explain this to me. So give me your opinion of this company and what they are doing.... While I know there are some products they have that are most likely "byproducts" of research that was intended for a different malady it appears they "ran with it." This is a good thang. I also realize that company "mission statements" can be and in most circumstances are BS. 

http://www.genzyme.com/corp/structure/corp_home.asp

OK so if you'll excuse my fantasies...... I see them combining the research I had seen on cloning rabbit penis's and what they are currently doing IRL with knee cartilage. Hey, as I see it dream, dream big and shoot for the stars. Never give up, never give in!


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: BLBC on July 15, 2006, 06:32:59 PM
Quote from: Barry on July 15, 2006, 06:03:27 PM
BLBC,
Firstly,welcome to the site and forum. We are always pleased when another Lady joins our ranks. Your perspective from a female point of view gives us all a greater insight of how the gals are dealing with Peyronies Disease. I would like to suggest that you get together with Christine and say hi. She is a great gal, a dear friend, and a soulful contributor to the PDS.

On another note, I have spoken to a urologist and my cardiologist asking your very question about stents added to the penis  as a sort of treatment, ( I have three). To make two long stories short, both doctors concurred that because the coporus cavernosa is elastic, a stent would be a medical/surgical impossibility.

Also, I love your analogy about your "snatch" (no sorries necessary) slamming shut. I must admit that I too have pondered similar thoughts. What an equally dreadful dilemma to that of a man having Peyronies Disease.

Regards,
Barry   

Barry, First I have had discourse with Chris, she is a wonderful woman! As I see it when a man has a partner Peyronies Disease is not an individuals "problem" it affects both people in the relationship. Period, no if and or buts. I love my husband and would kill and or die for him, simply put it is life. I did see an analogy someone used about womens breasts being a different size.... Ummmm well that's an easy fix as there is already breast augmentation so it made no sense to me. Needless to say I had to put it into "my prospective" yes, I realize that my brain works in an unusual way. I deal with it and so do those who are close to me, well they're force to anyways!
Title: Why is Peyronies a Disease rather than a Disorder?
Post by: BLBC on July 15, 2006, 07:24:42 PM
One of the first things I can see that is needed is to push for a rephrasing from Peyronies Disease to Peyronies Disorder. Men (meaning all of you with Peyronies Disease!) are not "diseased." I see diseased as something that is transmittable, communicable aka you can give it someone else! Have I looked up the proper terminology? No, but hopefully you see where I am coming from. Good gawd it is not possible to transmit a disorder where it is possible to transmit a disease. Peyronies Disorder, you own it, it is unfortunately yours and your partners (if you have one). Luckily you can not transmit it to someone else. A "disorder" is more "acceptable" (how FU is our society?) to talk about than a "disease" therefore it would be more acceptable for those who are in hiding to come out, so to speak. The more men who admit to having this disorder, the more it will be seen by the medical researchers and therefore be studied more, therefore the more likelihood of real help and (shall we dream) a cure being found. 

OK so this is my logic, my prospective, my warped way of thinking.....
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Blink on July 16, 2006, 02:53:45 AM
I too do not like the term "disease" when referring to peyronies, but that is what "they" call it. I feel like I have leprosy or something. I am wondering why that terminology came to be. I do know that in this country, in order to "treat" certain conditions with drugs, they must classify the condition as a disease. If I am wrong about this, someone please correct me. I guess I'm into conspiracy theories a bit. I don't trust anyone if big money is involved. I also believe that not enough research was being done because of the fact that the drug companies didn't think there was enough money to be made. Sometimes reality sucks. Keep the Faith, Blink
Title: Definition of Disease
Post by: ComeBacKid on July 16, 2006, 06:06:36 AM
I found this on the wikipedia...

Disease Definition (http://en.wikipedia.org/wiki/Disease)

Blink keep the faith buddy, you shared that number with everyone here to contact Auxillium, that karma will come back to help you in the end!

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on July 16, 2006, 08:01:26 AM
I don't much care what we call it as long as we are capable of understanding it.

My Peyronies Disease came on insidiously and without apparent cause. It has crept forward as a "disease" over the years despite my efforts to stop it. So, for me, the model of a "wounded penis" does not work as well as one of some sort of impaired process of ongoing injury/repair.

I just wish I knew why.

Tim
Title: Peyronies and healing process and inflammation
Post by: George999 on July 16, 2006, 07:23:08 PM
Tim, I agree totally with the concept that this plaque/scar tissue thing is a matter of a normal process gone amuck.  Most injuries of any consequence seem to generate a temporary lesion that gradually disolves and disappears.  The challenge with peyronies is how to stimulate this 'stuck' process to move forward in a normal healing process.  But I would suggest that another gremlin here would be an inaproppriate amount of inflamation that puts plaque/scar tissue formation in overdrive.  I would also suggest that arterial plaque has some real scar tissue qualities, even though it is usually sandwiched between healthy tissue.  But with the components of the various plagues/scar tissues being different, one would indeed have to approach them differently pharmacologically in any attempt to resolve them.  However, there might be certain substances out there that would have a positive effect on multiple types of plaque/scar tissue.  And where scar tissue has completely replaced healthy tissue, that alone should not preclude a cure.  There has to be a natural process whereby the scar tissue shrinks as the healthy tissue invades from the perimeter.  So I am really optimistic in regard to peyronies, but I suspect the process of a cure is going to be slow and deliberate rather than a magic overnight formula (which is more suited to temporary symptomatic relief).  So the question I am always asking myself is "how can I create the kind of healthy environment wherein my plaque/scar tissue will slowly but surely mend itself."  In other words, how can I tip the balance ever so slightly to halt and reverse this malignant process.  And the first step in that process for my has been to try to attack inflamation on as many levels as possible.  But thanks for the really great discourse on the healing process, it was right on target to my thinking.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on July 17, 2006, 09:45:48 AM
George:

Some thoughts on the actions of sildenafil, pentox and arginine. Just a brief note in addition to what follows; sildenafil (viagra) has been associated with both improving Peyronies Disease and causing Peyronies Disease. People chould remember that when reading such studies...

I was reading more about NO and the actions of pentoxyphylline and arginine - found a great article. In this, they used cell cultures derived from placque and normal tunica albuginea (TA). They found that the coincubation with TGF-Beta caused increased inflammatory changes in cell culture for BOTH TA and Peyronies Disease cells lines. Furthermore, they found that Pentox, arginine and sildenafil all caused that process of TGF induced inflammation to stop or slow greatly (more on this later). The article is:

L-Arginine and phosphodiesterase (PDE) inhibitors counteract fibrosis in the Peyronie's fibrotic plaque and related fibroblast cultures. Eliane G. A. Valente, Dolores Vernet, Monica G. Ferrini, Ansha Qian, Jacob Rajfer  and Nestor F. Gonzalez-Cadavid in Nitric Oxide, Volume 9, Issue 4 , December 2003, Pages 229-244.


They then used a rat model. In this model, they induce an injury to the TA that histologically mimicks Peyronies Disease (controls get injected with saline, and do not develop Peyronies Disease-like lesions). They found that the feeding of arginine, sildenafil, or pentox for the 45 day period that it normally takes to cause this lesion was protective - nearly completely protective.

This means that - in their model - the inflammatory changes are mediated via NO-dependent pathways. When one gives an "NO-donor" (thus increasing levels of NO - whether it be in a petri dish or a body), the NO that is briefly freed up has some actions. Specifically, it increases cyclic GMP (cGMP) and cyclic AMP (cAMP) which in turn activate the antioxidant pathways.

Here is the abstract:

"Inducible nitric oxide synthase (iNOS) is expressed in both the fibrotic plaque of Peyronie's disease (Peyronies Disease) in the human, and in the Peyronies Disease-like plaque elicited by injection of TGFβ1 into the penile tunica albuginea (TA) of the rat. Long-term inhibition of iNOS activity, presumably by blocking nitric oxide (NO)- and cGMP-mediated effects triggered by iNOS expression, exacerbates tissue fibrosis through an increase in: (a) collagen synthesis, (b) levels of reactive oxygen species (ROS), and (c) the differentiation of fibroblasts into myofibroblasts. We have now investigated whether: (a) phosphodiesterase (PDE) isoforms, that regulate the interplay of cGMP and cAMP pathways, are expressed in both the human and rat TA; and (b) -arginine, that stimulates NOS activity and hence NO synthesis, and PDE inhibitors, that increase the levels of cGMP and/or cAMP, can inhibit collagen synthesis and induce fibroblast/myofibroblast apoptosis, thus acting as antifibrotic agents. We have found by immunohistochemistry, RT/PCR, and Western blot that PDE5A-3 and PDE4A, B, and D variants are indeed expressed in human and rat normal TA and Peyronies Disease plaque tissue, as well as in their respective fibroblast cultures. As expected, in the Peyronies Disease fibroblast cultures, pentoxifylline (non-specific cAMP-PDE inhibitor) increased cAMP levels without affecting cGMP levels, whereas sildenafil (PDE5A inhibitor) raised cGMP levels. Both agents and -arginine reduced the expression of collagen I (but not collagen III) and the myofibroblast marker, α-smooth muscle actin, as determined by immunocytochemistry and quantitative image analysis. These effects were mimicked by incubation with 8-Br-cGMP, which in addition increased apoptosis, as measured by TUNEL. When -arginine (2.25 g/kg/day), pentoxifylline (10 mg/kg/day), or sildenafil (10 mg/kg/day) was given individually in the drinking water for 45 days to rats with a Peyronies Disease-like plaque induced by TGF β1, each treatment resulted in a 80–95% reduction in both plaque size and in the collagen/fibroblast ratio, as determined by Masson trichrome staining. Both sildenafil and pentoxiphylline stimulated fibroblast apoptosis within the TA. Our results support the hypothesis that the increase in NO and/or cGMP/cAMP levels by long-term administration of nitrergic agents or inhibitors of PDE, may be effective in reversing the fibrosis of Peyronies Disease, and more speculatively, other fibrotic conditions."

What got my attention, and which goes to the heart of what many of us dream of, was addressed in their discussion of the results:

"In summary, we propose that pharmacological interventions aimed at elevating NO, cGMP, or PKG levels, and possibly cAMP, in the penis are potentially useful for the treatment of Peyronies Disease, and more speculatively, for other fibrotic conditions. This work has not addressed the question on whether this intervention would induce regression of an already well-formed plaque, but comparison of multiple gene expression profiles in human Peyronies Disease and the related Dupuytren's disease suggests that both conditions are in a dynamic cell and protein turnover involving replication, differentiation, apoptosis, and collagen and extracellular matrix synthesis and breakdown [8, 9 and 10]. Therefore, modulation of any of these processes may eventually involute the plaque, as has been observed in generalized fibrotic conditions [68 and 69]."

FYI, those last two references are:
68. H.S. Lee, G.T. Huang, L.H. Miau, L.L. Chiou, C.H. Chen and J.C. Sheu, Expression of matrix metalloproteinases in spontaneous regression of liver fibrosis. Hepatogastroenterology 48 (2001), pp. 1114–1117.

69. T. Lai, J.T. Fallon, J. Liu, J. Mangion, L. Gillam, D. Waters and C. Chen, Reversibility and pathohistological basis of left ventricular remodeling in hibernating myocardium. Cardiovasc. Pathol. 9 (2000), pp. 323–335.

One final note for those who grow impatient with a lack of obvious results: The single case report on pentox leading to improvement (written by Dr Liu) showed improvement in a man with long standing lesions after TWO YEARS of treatment. Patience is a virtue...

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Lunchbox on July 17, 2006, 09:55:51 AM
A quick "off the current topic question".  I have read that during the acute stage of the scar (first 18 months or so) that it often changes shape and even location.  Have any of you experienced this?  I have noticed that all four dents I have had reacted the same way.  Once the pain went away the dents became bigger, but more shallow.  After the dent is gone I am left with curvature (if it was a large dent), but no palpable scar.  The one I currently have on the right side has gone from 1/8" to now about 3/4", but it is very shallow.  And I cannot locate a scar any more at all.  Just a spongy "vein" like thing.  Fortunately the pain is gone as well.  Any thoughts?
Title: Peyronies and inflammation
Post by: George999 on July 17, 2006, 02:01:34 PM
Lunchbox, I am not really sure that this is off the current topic.  Tim and I have been discussing a bit the role of inflamation as it relates to peyronies.  And if inflamation indeed plays a crucial role in the peyronies syndrome, it makes perfect sense that the plaques would be able to move around chamelion like, since as one area finally heals, another becomes inflamed on the process continues.  And I would suggest that another issue here would be the actual way in which the penis is 'engineered'.  The structures of the penis seem to have a near perfect engineering and when that perfect balance is altered by the presence of a plaque, it really could open the door to a syndrome of an ongoing sequence of low level injuries that tend to perpetuate the problem. (Much like when you injure your right leg and then you have problems with your left as it now must bear more stress.)  I think that is one thing that interests Tim and myself regarding the potential impact of inflamation.  And to answer your question, yes, I have seen my plaques move around, grow and shrink, and exhibit all sorts of weird behaviors.  And although peyronies has some general commonalities in terms of behavior, its all very unpredictable when it comes to specifics.  I have really tried to major on anti-oxidant/anti-inflamatory supplements and have been very satisfied with the results.  One of the things I have requested of my doctor was a check on CRP/homocystine, and he did it and confirmed that my levels are currently down through the floor, which is what I wanted to see.  But I am intrigued with the information Tim has just shared regarding arginine, pentox, and sildenafil.  I have looked at arginine before and have been turned off by potential side effects.  But most of those seem somehow related to the lysine/arginine balance.  I think if I could find a good balanced formulation of these two amino acids, I would be severly tempted, especially now that Tim has brought up the inflamation link.  I previously viewed arginine as only a NOx precurser and NOx only as a vasodialator and was really unaware of the inflamation link, but of course it makes perfect sense.  More blood, more oxigenation, less inflamation.  So Tim, do you know of a good balanced arginine/lysine product?
Title: Steroid
Post by: Liam on July 17, 2006, 04:04:44 PM
Didn't they used to inject some kind of anti inflamtory into the penis for Peyronies Disease?
Title: Re: Penile Steroid injections
Post by: Old Man on July 17, 2006, 04:19:18 PM
Liam:

Many years ago I was told that some uros/MDs did inject steroids into the penis for Peyronies Disease. It was supposed to break down the buildup of plaque/nodules, etc. However, for some reason, it just faded away and as far as I know now, it is not used anymore. Probably did not work.

I guess when verapamil came on the scene for Peyronies Disease, it kind of took off like wildfire and everything else just took  a back burner. It seems like steroids should help with the inflammation stage, just MHO. I get the steroid shots for knee and back pain flareups, but whether or not this would be related to Peyronies Disease, have no clue.

Regards, Old Man
Title: controlling plaque generation and obliterating existing plaque - collogenase
Post by: George999 on July 17, 2006, 07:53:09 PM
I suspect that for suppression of inflamation to be effective against peyrones, it has to be ongoing.  That would be difficult to acheive with steroid injections which are more suited to a single treatment type approach.  What would be interesting to me would be to use an enzyme formula injection(s) to disolve the plaque while at the same time covering with an anti-inflamatory oral regimen to prevent a reoccurence.  But just killing off the inflamation does not eliminate the plaque, it just throttles back (hopefully) the generation of additional plaque.  But if you can kill off the generation of new plaque, it would seem that they old plaque would gradually be resolved by natural processes, and that is what I am aiming for.  But the ultimate solution would be something like collogenase.
Title: Stress?
Post by: SteveW on July 17, 2006, 09:45:24 PM
As some of you are aware, my stress levels the last 3 1/2 weeks have been incredibly high.  Lack of sleep, worry, grief and longing seem to be paramount to my existence right now.  Oddly, my severe Peyronies Disease seems to again be active.  The pain has returned and the curve seems to be worsening slightly. 

Any other men have opinions-experience with the possible effects of stress and emotions on our Peyronies Disease?
Title: Re: SteveW - Stress
Post by: George999 on July 17, 2006, 10:42:21 PM
Steve, I absolutely believe that it is not a coincidence that your peyronies is being affected by what you are going through.  Aloe vera softgels have helped me a lot in terms of anxiety and stress and I highly recommend them.  I also believe that they have been helpful with my peyronies over time.  Here are a couple of links I think you will find interesting:

http://www.stress.org/

http://www.stress.org/problem.htm

I wish you the best.

- George
Title: Re: The impact of emotional states on Peyronies Disease
Post by: Tim468 on July 17, 2006, 10:46:04 PM
My Peyronies Disease got worse right after my divorce. I relate it, however, to a loss of libido and a consequent lack of erections. Interestingly (at least to me!) is that I went on Celexa immediately in the middle of the worst of it. During that crazy time, I had a common side effect of that particular drug, which is having pretty hard erections (usually nocturnal but also harder when slightly aroused). The irony is that I had no sex drive, no partner, and a great erection most of the time! Talk about irony!

However, when things got worse was later when I was still on the drug but coming off of it, and with fewer side effects (including erections). I was still alone and without much in the way of a libido - and I believe that the lack of hard(er) erections was associated with the progression. I think this (as opposed to "stress" per se) since my stress level had lessened, and my dose of celexa had lessened - so I felt niether of those were as likely to be temporally associated with the progression.

Later (very recently), though, it seems to be progressing without those conditions (less stress, no celexa, and a better sex life).

One way to test this theory is to use a VED. It may be a bit "clinical", but it might be something you could do while not feeling as sexual and partnerless - it might provide benefit. As it would not require a partner, it could thus be a thing that you could do alone without it being "about sex".

Tim
Title: Stress
Post by: Liam on July 18, 2006, 01:05:28 AM
When stress is high, eating patterns, sleeping patterns, and activity levels all change.  These all effect a host of biological functions.  I think it's very reasonable to attribute at least some of the responsibilty to stress.

I was having classic signs of depression, but I wanted to "handle it" myself.  I didn't need a doctor or meds.  My stomach and digestion were haywire.  My Peyronies Disease was becoming worse and my ED was a zero.

I finally decided to think about myself as if I were someone else.  If someone had the symptoms I'm having, what would I tell them.  I went to my family DR. 

Now, I'm taking wellbutrin and all is well :).  At leaset I'm better.   I hope not to be on the med for long.  I do plan to take it as long as needed.
Title: Re: Dealing with Anxiety and Depression
Post by: Lunchbox on July 18, 2006, 07:35:34 AM
I have to agree.  I have had anxiety problems since I was a teen.  I have learned to cope through excersize and being a musician.  Except for the past 12 months.  Stress and depression got so bad that I didnt want to do anything any more.  I went to work, then came home and sat on the couch.  I started taking effexor xr a few weeks ago and things have definately been looking up.  Everyday I seem to care less and less about my Peyronies Disease.  My sex life with my fiance is improving.  I wake up every morning rock hard for the past week.  And the cold feeling I have had in my crouch for the past few months is leaving as well.
Title: Biologic in Nature
Post by: Liam on July 18, 2006, 11:02:23 AM
Anxiety and Depression have a biologic cause that may be triggered by stressors in the environment.  Sometimes reducing the stressors is enough.  Sometimes the biologic nature needs to be addressed as well.

There is no shame in getting treatment when your sick.  It is no different with anxiety and depression.  I still feel I'm in control of my life.  I'm in control enough to seek help when I need it.

This post was not for anyone in particular.  I believe if two or three of us are discussing it then there are more reading it that may need to seek help.

One other thing, these meds don't give you a buzz or make you high unless you seriously abuse them.  You feel "normal" again.  What a concept!  Of course, I imagine there are many more normal than me ;).

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Lunchbox on July 18, 2006, 12:21:17 PM
I have thought about creating a survey to cover a wide variety things that may contribute to Peyronies Disease.  This includes psychological health before and during a Peyronies Disease outbreak.  I have a degree in psychology.  Not that a degree means I know a whole lot of anything.  But I do feel confident that I could find related factors out of a significant sample of people.  What would be great is if I do this, to have the survey not even mention Peyronies Disease.  And have people with out Peyronies Disease to fill out the survey as well.  This would help isolate a combination of variables that could contribute to Peyronies Disease.  I think we all agree that something by itself, like stress for example will not cause Peyronies Disease.  Scientifically if it did than everyone with elevated stress would have Peyronies Disease, and everyone with Peyronies Disease would have elevated stress which is not the case.  But is would be very interesting to see how many related factors we all have.  I ran a few studies in Grad school so I think I could pull it off.  Not that I think this would lead to a cure by any means (I'm not so pretentious).  If anyone would be interested in helping, I would be up for it.
Title: I’m not quite sure where to post this question
Post by: BLBC on July 18, 2006, 10:17:23 PM
I'm not quite sure where to post this question so Mods feel free to move it wherever you like...

With the knowledge you currently have now, if you were just diagnosed with Peyronies Disease what would you do........ What would you try, what would you not waist your time and money on, would you share differently with your partner. And all of those other what's that I am missing.

Basically if you could have a "do over" (other than not developing Peyronies Disease to begin with) what would you do?

My O2 tanks are empty and there nothing to sell for the days effort so it's time to go to Cabo Wabo!


Title: Do Over
Post by: Liam on July 18, 2006, 10:58:37 PM
I would say NO to PABA and not get my hopes up for vit E.

My favs: l-arginine, l-citrulline, l-carnitine.  and S-T-R-E-T-C-H daily.



Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on July 18, 2006, 11:07:13 PM
>>My favs: l-arginine, l-citrulline, l-carnitine.  and S-T-R-E-T-C-H daily.<<

In addition to the above - all of which I agree with - i would strongly consider the following:

1) Iontophoretic application of verapamil - especially if the lesion is less than 3-6 months old.

2) Non-Steroidal Anti-inflammatory Drugs (NSAID) like advil.

3) I would add vit E,vit C and an "anti-oxidant diet", and would stir in daily exercise, weight loss, prayer and meditation, along with therapy for stress.

4) More speculative, and especially worth considering for a more longstanding lesion, or failure to regress on the above: sildenafil and pentoxifillin.

5) find a way to get a daily erection  :o

6) go to a doctor who knows what he is doing to get data - color duplex ultrasound to describe lesion completely, and to get help getting scripts filled.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: BLBC on July 18, 2006, 11:16:51 PM
"1) Iontophoretic application of verapamil - especially if the lesion is less than 3-6 months old."

What I have not quite grasped is how many treatments? I do understand the daily thang.  Currently they are doing this type treatment with a steroid (begins with a "D") only. If I recall correctly they were recommending 7 treatments. All being done at a PT's office.
Title: Forgot Vitamin V
Post by: Liam on July 18, 2006, 11:27:34 PM
Forgot to say 50 mg Viagra daily.  BIG TIME FAVORITE  ;)

Tim,

I've been considering NSAIDs.  What kind and what dosage do you take?  It couln't hurt other aches and pains, too.
Title: Re:BLBC _ doing it over.
Post by: Hawk on July 18, 2006, 11:47:01 PM
BLBC,

The advice you have received takes the words out of my mouth.  A couple points.  I think Tim has helped me establish not to overlap L-arginine and Viagra the same day unless i misunderstood, because L-arginine is a nitric oxide donor not to be taken with Viagra.

I would also use limited heat like a hand held shower that can be directed.  If erections are a problem, NOTHING compares to trazodone 25 mg at bedtime for night Time erections.

I have to end by rambling a bit about how well your question was thought out and asked.  It is much like a just diagnosed section that is being considered for our website.  Your frank manner, analytical, determined approach are refreshing.  Your husband is a lucky man considering. 
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: BLBC on July 18, 2006, 11:56:31 PM
Hawk, I have been every where on the internet to the determent of my business. I have found this site to be the best and I have seen a lot of Peyronies Disease sites. Some with forums, some without. This one it truly the most informative and everyone here is very supportive. I am very fortunate to have found all of you!

I do believe a "just diagnosed" section would be very helpful and look forward to it!

Kudos to all of you for helping me help the man I love!
Title: synergy
Post by: Liam on July 19, 2006, 12:25:47 AM
Hawk,

I believe the l-arginine to have a synergistic effect on the Viagra.  I told my uro I was taking it and he thought it was OK (but, not optimistic).

I use mild heat, also.  I apply heat for about 45 minutes while streching.

I am going to see if my GP will change me to trazodone.
Title: Multiple Plaques
Post by: Disposable Strategies on July 19, 2006, 02:56:19 AM
Most of the posts I've read have implied one plaque causing a bend. My case is different. I have many plaques all throughout the shaft.  So not only is there a curve to the left, it also curves down and has an hourglass shape. There doesn't seem to be much loss of length, but there is a noticeable loss of girth. The skin above where the plaques is much darker than the rest of the skin.  It's been this way for as long as I can remember (I am 20 years old). I've been trying to find out whether this is peyronie's for sure or not, and have not been able to come to a conclusive answer. I'm hoping someone reads this and has any information/suggestions. Thanks. -DS
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ComeBacKid on July 19, 2006, 03:31:33 AM
Disposable Stratgies,

I can't say I've ever heard of anyone who described the condition you are, however everyone seems to have a different story.  First off, how do you know you have many plaques all over, did you get an ultra sound?  I think most people lose girth, so the fact that you have lost this is not uncommon, I have myself.  The dark spots I've never heard of anyone having those.  Have you been examined by a urologist?  I think the information/suggestions you will get will be "you need to see a urologist and get examined."  Just a guess  ;)  I would get in there and see what your diagnosis is.

Title: Re: Multiple Plaques
Post by: Blink on July 19, 2006, 05:35:09 AM
I have three plaques that I know of at this point. My penis curves to the left, curves up, and has the hourglass. I don't have any discoloration of skin. Also, the only problem I have with girth is the hour glass. I can still get an erection, but it is really awkward to attempt sex. I did have painful erections in the beginning. The pain seemed to go away itself. At this time I'm abstaining from meds because I want to start documenting exactly what I'm taking. I figure if I keep a journal and have some improvements, I can report my findings here. People can then choose to go with what I used, or develope their own plan of action. I agree with ComeBackid, You should at least get checked out to be sure of the diagnosis. There are a lot of suggestions here on the forum of treatment plans that seemed to work for some people. Also, if you check on this site you can compare what others have tried, to what you are prescribed. You may save yourself some time and money, by avoiding stuff that doesn't work. Keep the Faith, Blink
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on July 19, 2006, 10:44:02 AM
Comments on comments...

The iontophoresis is supposed to be done for 24 times over a period of about 8 weeks, essentially three times a week (ie M, W, F). The every other day dosing was simply chosen by the researchers - I do not know what data they used to decide on that. I do know that daily iontophoresis gives the skin less time to recover from the irritant effect of the electrical current. The  seven treatments in the office is referring to verapamil injections.

Dexamethasone (AKA Decadron) is added to the verapamil in the Italian protocol. Although it has a weakly positive chare, it is thought to weakly bind to the negative verapamil and to be "carried into" the tissue with it. I am unconvinced without some data on this in an animal model.

I am unsure of the proper dose of Viagra (or Sildenafil). Fifty a day seems fun to me - though the facial flushing is a drag for some of us. I like the smoothness of onset and prolonged action of cialis, but am unsure of it acts the same way that sildenafil does. I read in an article I just found that the dose used in their rat model would be equivalent to a 100 mg daily dose. That seems like a lot to me - but I wouldn't mind looking embarrassed for a while if it helped my Peyronies Disease!

There might be either additive or synergistic effects of L-arginine with Viagra, so caution is indicated. FWIW, I have used both on the same day without any ill effects. I think that there might even be benefits from using both simultaneously, if one's heart is not affected too much, or if they do not have high blood pressure (which might require meds that do not work well with these two drugs/compounds). I am still not sure of what a "good dose" for arginine might be.

Finally to "Disposable Strategies", I think that you need an evaluation. This sounds like a healed injur to your penis, or a developmental issue. IOW, you may not have a "predisposition" to a Peyronies Disease response (characterized by an excessively progressive inflammatory disease not mediated by anti-inflammatory healing processes). Thus, you might be a good candidate for a surgical fix (if indicated) or reconstruction - without the concommitant worry of worsening because of the Peyronies Disease after the surgery (something we all worry about it we think about surgery at all!). You will need a good evaluation by a surgeon,and it might be even better if you get the opinion of a pediatric urologist, not just an adult urologist.

Tim
Title: Re: BLBC question (What would you do), adding to list
Post by: Angus on July 19, 2006, 12:41:37 PM

   BLBC,

   A very good list of things to start with is in the posts below. I want to add to or second the "things that did not work" list:

   Topical Verapamil. Used it for many months long ago with no changes or positive results. There is lots of discussion elsewhere on the board about TV.
   Steroid injections. I only had one of these years ago and I cannot say if it helped any if at all, and if were to go back and do something differently I would have stayed away from penile injections. I seriously doubt any uro would recommend this these days, but I wanted to mention it just in case.
    PABA. Prescribed by a uro years ago. Took hundreds and hundreds of these, like many men here have done in the past. I have never seen a post or study that indicates positive results. PABA is also upsetting to the stomach.

   
Title: Ionotophoresis
Post by: ComeBacKid on July 19, 2006, 03:17:32 PM
Tim,

I take it for a positively charged medicine you need a negative current to drive it into the skin?

I've noticted from doing daily IONO treatments some skin dryness and irritation.

ComeBackid
Title: Re: BLBCs question - favorite peyronies therapies
Post by: George999 on July 19, 2006, 04:23:17 PM
The core of my peyronies strategy right now:

Aloe Vera (soft gel formulation)
Vitamin E (balanced broad spectrum formulation with all eight subgroups)
Neprinol (who knows if it works ... but I am sold on the formulation itself)
Maca (great for general sexual health - I use the tablet form)

I know my list is different from everybody elses, but it is working for me over the long term at this point, so I plan to stick with it.  I also have an L-Arginine formulation on order and will see how that works out.  And you will find a lot more interesting pointers from everybody here by scrolling over the Oral Treatments discussion.  As for new stuff out on the horizon, I am hopeful that the collagenaise product that is currently trying make it over the FDA hurdle will be the ultimate answer for many of you out there.  I definately believe that we are on the verge of a reasonably palitable and simple cure for this dread disease, so it is not time for despair!  In the whole scheme of things five to seven years is not a long time period so don't nobody do anything rash that you might regret later.  Patience can bring one great rewards.  In the mean time there are so much great information on this forum to help in managing things along the way.  So hang in there!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Rico on July 19, 2006, 05:06:48 PM
George,

Have you used a VED yet? What are you thoughts on VED in the early stages of this peyronies? Thanks.

Rico
Title: VEDs
Post by: George999 on July 19, 2006, 06:42:28 PM
Hi rico, I've never used a VED.  My peyronies is right out at the very end of my penis, so there is no bend in my case.  For a while, it was very inflamed and 'rubbery', but now it is nearly normal.  I'm sure that a VED can be helpful to some of you especially where there is a bend involved, since it would allow for a gradual  and precise stretching of the afflicted area.  I also like the fact that I learned recently from Tim that L-Arginine actually should help disolve the plaque.  There are just so many useful approaches out there.  The one around here who is the expert on VEDs is Old Man.  He is probably the best one for information.  Also be sure to look over the VED discussion itself. - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Rico on July 19, 2006, 06:49:06 PM
Thanks George, I think arginine is a good, maca has a good amount of arginine in it, and many more minerals. Thanks.

Rico
Title: Re: VED usage for sympoms other than bend/curve
Post by: Old Man on July 19, 2006, 10:58:07 PM
George999:

The VED can and will help with Peyronies Disease symptoms other than bends, curves and the like. It works very well for plaque, nodules, the vein like strings on the top or dorsal area as well as hourglass effects.

The gentle stretching on a daily basis will help keep blood flowing into the affected areas and over time leads to at least some correction of the problem.

I have worked with guys that have had all types of Peyronies Disease symptoms and they have enjoyed great success with the VED therapy.

IMHO, the VED is the least invasive method of treating VED symptoms. The VED therapy should always be used with extreme caution and the user needs to exercise common sense with the amount of vacuum pressure used at all times. AS with all treatments or use of drugs, abuse usually leads to major problems.

Regards, Old Man
Title: Benefits of VED in treating Peyronies
Post by: George999 on July 20, 2006, 04:06:38 PM
Old Man, thanks so much for setting me straight on this issue.  There are just so many non-surgical approaches to treating peyronies.  I just know that some docs are unfortunately pushing some people into unnecessary surgeries.  And while I know also that surgery is sometimes the best solution, I really think it should be a last resort option.  So, once again, thanks so much for sharing your extensive experience on this subject with all of us.  It is deeply appreciated.  - George
Title: Surgery
Post by: ComeBacKid on July 20, 2006, 04:25:26 PM
George,

You are so right about doctors pushing people into surgery, but surgeons sell surgery, and they never tell you all the risks.  Even doctors in general are paid to promote pills.  My dermatologist put me on accutane for acne when I was a kid and it messed me up mentally, I will never be the same, not to mention I've lost moisture in my body and I will have dry skin for life, my eyes burn and water, my hair sheds at a faster than normal rate, decreased my libido and may have made my peyronies worse, makes me sweat more than normal even in relatively cool climates, makes my joints ache and I feel older than normal, made my OCD worse, and made me depressed.  Beforehand my dermatologist warned me only that I could have kidney damage and did not go over all these negatives which will follow me around for life, and that was on a pill.  Now imagine a surgery for peyronies?  I would try absolutely everything possible before surgery, and even then I'd at least wait for collaganese injections to come out, even if they take years, before I'd try surgery.  Even if they get the plaque, if your impotent your penis is useless.  Things can go wrong, and guess what, you can't sue if you signed any forms and the doctor did things basically right.  Today it seems our society wants to cut first, and think about what they did later. Unless your penis is severly bent like more than 75 degrees and your already impotent I would highly recomend avoiding surgery at all costs.  The VED seems to be helping with my blood flow and the L Arginine, I will keep everyone posted on my results, this could be the closest thing to a cure we see, I have my fingers crossed.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Blink on July 20, 2006, 05:20:13 PM
I too have a problem with surgery. There is too much of a chance for things to go wrong. All that I've heard about using herbal and vitamin supplements, along with the proper VED program, seems to make the best sense to me at this time. ComeBackid makes a good point about using what you have, rather than not having anything left to use, if surgery is a failure. After the fact, it's too late. I'd rather take my chances with more natural things than radical surgeries and the like. If we could only get closer to figuring out why we are the ones who get this disease, I'm sure we could find a way to make it go away. Maybe another survey is in order. I'd like to find out if there are others out there who have some of the same past or present behaviors as me. Maybe by listing certain habits like smoking, alcohol consuption, OTC drug use, recreational drug use, and other criteria, we can get an over view of similarities. Perhaps this disease is being helped by some condition in our bodies that we all have in common. If we can link that together, maybe if some other part of our body is not producing some chemicals that it should, we can bring on relief by treating the other deficiencies. I'm gonna look into this a little further. Keep the Faith, Blink
Title: Blink Survey
Post by: Liam on July 21, 2006, 12:10:25 AM
Add sugar usage and weight change, to the list of questions.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on July 21, 2006, 09:25:29 AM
What we need is a relational data base that alows us to "data mine" for links. Asking the right questions is important, IMHO. But it is harder to then make sense of the answers. The keys are to ask questions in a way that makes data collection possible, to be able to make sense of it in a global and longitudinal way, and to get a TON of data.

This is not easy. I have tried to participate in the development of such a data base for CF care, and finally bailed out (too time consuming). But we have finally gotten a data base that is going to allow us to draw correlates between genetics and outcomes.

But remember how complex the body is! For instance, a certain genotype leads to different outcomes depending on social status, income, access to care, the state in which you live, and so on. It is also dependent on how good the doctors are. Here is a link to a great article on this in the CF community from the New Yorker. It points out the difficulties in assessing the quality of care, and why it is important.

Reading the article will also remind you haw damn far behind the CF community the Peyronies Disease community is.

Tim

"The Bell Curve", by Atul Gawande

http://www.newyorker.com/fact/content/?041206fa_fact

Title: Effects of abnormal blood chemistry in causing peyronies
Post by: George999 on July 21, 2006, 02:33:49 PM
I can certainly tell you some of the things I would like to know about people newly diagnosed with Peyronies.  Such as what prescription meds they have taken over the last six months, what chronic conditions they have (hypertension, diabetes, etc), and what their CRP, aldosterone, etc. levels are.  But some of this stuff, I couldn't even answer myself.  How many physicians check CRP levels in these cases?  Not very many, I suspect.  But it would certainly be interesting to know such things, as they might be indicative of potential auto-immune activity going on, etc.  Its the kind of basic stuff any serious investigator would want to know out the door, a basic blood chemistry profile, etc.   Just the other day there was a potentially major alzheimers breakthrough, and it happened only because some researcher was meticulously comparing blood panels of alheimer sufferers with normal controls.  Well duh!  Yet I get the picture that there simply isn't a whole lot of investigation going on in the medical community regarding peyronies.  And any really serious investigation needs to involve the medical community or it is going to be severely limited.  It is the medical community that holds all the investigative tools.  Sorry to be so negative, but for me this is reality.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Blink on July 21, 2006, 04:17:12 PM
G999, your points are good. I don't understand why all of these type of tests aren't given. That's why I figured if we could put together a survey that would include at least some of the things that we know we have, or dealt with in the past, we may find more common ground. Once established as common factors, we could present them to our docs and ask for some specific tests. We could then see if the tests bring up the same common conditions. If we can find any precursors that already have treatments to them, we can begin to figure out treatments for peyronies. It's worth a try as far as I'm concerned. If there are any people out there who have been downthis road before, please come forward and let us know what you have found. If there are any people with ideas for this survey please post them also. If we can't get the cooperation we want from the medical field, let's try something on our own. If it helps future sufferers of peyronies, it's worth doing. Keep the Faith, Blink
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Christine on July 21, 2006, 04:20:49 PM
I would think that this would be extremely helpful because if someone is just starting out with symptoms and finds their way here at least they will know what to look or ask the doctor for.  They will be informed and know if there are tests that should be run or options that are available and much less to accept the "take vit E and come back in 6 months" recommendation.
Title: Tube?
Post by: Tyler on July 27, 2006, 01:56:55 AM
Hello everyone, has anyone noticed that the tube (not sure of the name) on the front of the penis seems like it is broken after getting peyronies? maybe i have something else but when i feel around with my fingers it looks and feels like it is broken.

Thanks ahead of time

Tyler
Title: Penile Fracture
Post by: Liam on July 27, 2006, 02:40:45 AM
http://www.emedicine.com/med/topic3415.htm

Just Looking,

This article is worth seeing.  I'm not saying this is what you have.  Reading this may ease your mind.  There is a hinging effect in Peyronies Disease and an hourglass configuration that may be to what you are referring.  If you are worried, go see your urologist again.  Part of their job is to explain things to you so you can understand.

If you are on topical verapamil and you are having financial concerns, it may be worth it to call the drug company to see if they have a free drug program for which you may enroll.

I work in the public schools.  When do you start back?  I go back mid August.  I am no where near ready :'(.

Liam

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: VladtheImpaler on July 27, 2006, 10:28:00 PM
Hi,

this is my first post here, and I am happy as hell this forum exists.  :)

I am not 100% that I have peyronies, but I really dont know what else my erection problem could possibly be. I would just like to tell about my symptoms and see if you guys can relate.

- My erections can be extremely hard, but it isn't a strengthy hardness, the corpora cavernosa are extremely brittle feeling, and my penis doesn't feel expanded, like there is absolutely no elasticity to it at all.....if I had sex with it or tried to bend it when erect i would snap it, no crap. It is almost like the whole of the tunica is one big "minor" peyronies scar. because it feels very fibrous in a hard brittle way.

- I do not have a peyronie's "lump", but a few months ago there appeared a  mm. thick strand which goes the whole length of my penis up to the head on the left top side of the CC. It actually has a pulse to it when I'm hard. it is not a thrombosed vein, and sure feels a lot like I would imagine one of those lumps feels. On the side where the strand is my penis is much less bendable......
I guess I'm asking if peyronies scars can take this shape, or if you can have this disease without a scar?

- It hurts when I ejaculate, afterwords my penis is the classic definition of inflamed.

I can add to this but I'm real tired. As I am only 20 years old, this has to be my culprit because I am in otherwise great health. I have posted simialarly in two penis enlargement forums with 50 000 members each and no one could at all relate with whats going on with me. personally I hope this is peyronies so I can just start trying to fix it because this search for what the hells going on has been an extremely perplexing ride.

Any insight is greatly appreciated.  :)


Title: RE:Mark501's question about pain elsewhere
Post by: phil on July 27, 2006, 10:45:49 PM
Mark,

Yes, sometimes I have discomfort for a day or two in the genital/pelvis area after having sex. Not pain, but a kind of soreness or tenderness.  Maybe the nerves  are affected or relaying this to the scrotum or pelvis.

Phil
Title: Don't wait fot the sunrise
Post by: Liam on July 27, 2006, 11:22:00 PM
Vlad,

I would go quickly to a urologist.  You may have an infection.  I don't know, obviously.  I would want to eliminate that possibility first.  I would not rule out a thrombosed vein so quickly.  It could be Peyronies Disease.  Only one way to know for sure.

In other words, get thyself to a physician.  They have seen it all before.  At least that way you know what your up against.

OK... I have to do this.

Cross the bridge.... Suck it up.....Theres a lot at stake....Don't bat the issue around any more....One supplement not to try: Garlique.....

Hope the levity at your expense didn't offend you.  Good Luck!

Liam
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: youngpain21 on July 31, 2006, 07:07:13 PM
I am only 22 years old and dealing with Peyronies Disease is very rough on me, I find it to be very taxing and causes a lot of worry about the future. I just want to know that I can still have a happy sexual relationship with my wife when I get married, and the thought of sex now has me scared worrying that I could injure myself more. My number one problem is my shaft is very unstable. I believe when it gets erect now, this would cause a lot of problems with sex because reinjury could occur with so much unstability, flaccidity past nodules in the shaft. I went to Dr. Levine and he tells me that the nodules and plaques I have are not very bad for a Peyronies Disease patient, that I am only a 2 on a 0-10 scale of how bad it is. I have a curvature, but it isnt the big problem for me, it is about 30 degrees to the left. Does anyone else have problems with instability and softer erections? I find that taking Cialis does help to some degree, but I take it rarely. Just wondering if anyone else shares the same issues and what might help for an easier sexual relationship. Thanks!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Liam on July 31, 2006, 07:18:22 PM
21,

Welcome!  You will find a wide variation of severity, degree, and direction of curve.  You should find plenty of advice.  Look back on the previous post and go to the website, if you haven't already.

Everyone here likes to keep up with Dr. Levine.  What did he prescribe for you?  I ask because he is doing a couple of trials.

Liam
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: youngpain21 on July 31, 2006, 07:24:00 PM
I am on Pentox twice a day, Cialis 5 mg once every two days, and iono twice a week. I certainly hope it will help with the buckling or instability that occurs around the plaque that worries me terribly.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Rico on July 31, 2006, 08:20:31 PM
Youngpain21,

Well you have a good doctor, that is a start. I also think this is the best forum on the net, real people and even though we all are in different stages of peyronies, you usually can find someone close to your symptoms.
You are young, so this is good, your body will respond to treatment in my opinion better.
I have the hinge effect my self, just slight curve up, that isn't a problem, I never had any pain. I have lost length and some girth around the plaque. I find the buckling effect is more serve when I'm tried or run down, it is all the quality of erection, stronger erection, less hinge.
I know ones mind plays on erection quality also, if you think about(and this is hard not to), then it will be affected.
I believe you need to be well rested, deal with the mental side of this, and get as healthy as you can. I have learned a lot reading the forum. Some of the things I might of wasted time on have already been researched, you do have to go with what you heart says and you believe in also. The arginine and some of the other supplements that make sense to me, where re confirmed on this forum to me. And if you want to try ved, then there are people who can give you advise.
Being 21, you body is strong, but you have to give it what it needs to heal itself, diet, exercise and mental health will carry you far....you have come to the right place...read and ask questions, start a basic healthy life style, if you believe in God, pray.....nature is a healer also....find your peace in your heart...you will be fine...I will say a Lord's pray for you tonight..

Rico
Title: Letter to Augustus
Post by: zigwyth on August 18, 2006, 04:30:17 PM
Didn't want to PM LarryH with this question because there may be others curious. Any word yet on reply from your letter sent to Augustus(I think this is the name of the company who makes Soma correct), calling for the Head of the employee who made the libel post of it curing his Peyronies Disease?
Thanks
Zig
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on August 18, 2006, 08:28:36 PM
ok this question is about pain related to Peyronies Disease. Now I have had this weird pain from when I thought back was well before I ever got Peyronies Disease. I started thinking and now im not sure if I had this pain before Peyronies Disease or not. The pain is very hard to describe, but its like this: I first noticed it when I was breaking a leg off a old table at work and the pain shoots from the left inside of my thigh likee near the groin area orr in it and shoots up the left side of my testicle and penis. Now it has gotton worse over the years, lately when I do jumping jacks I get this pain and cannot go on. Also if I take both of my legs and push them towards each other where the knee caps meet and squeeze I get this pain. What really concerns me though is in the last two mornings when I wake up and I walk I get this pain on the left inside of thigh and runs through testicle and penis. I thought maybe I had a hernia or something since I lift weights alot and did once one day notice when I went down to pick up a bar with weights I got this pain. I wanted to know if anyone in here has a pain like I described. The pain is very intense and sharp but in a weird way like no other pain I have felt before. Its crazy feeling and hurts so bad. Im dreading going to bed tonight as I fear tommorrow morning I will wake up with the same pain when I take steps. I have no pain when I have erections or nothing like that. I do however have a calcium deposit in my left testicle and thought maybe this could be the cause of the pain? Anyways anyone have any thoughts on this? Thanks
Title: Hernia pain
Post by: Rico on August 18, 2006, 09:36:17 PM
Sounds like a hernia to me. Have you google hernia pain? Been to the doctor, I would wear a jock strap at work, as much support as you can get. I'm curious on the calcium in your testicile.

Istead of bouncing with jumping jacks, try some real slow movement on the stairstepper, this might help. If it is getting worse right now, I would take a couple of long epsom salt baths to reduce the inflammation.

Rico
Title: Inguinal Hernia
Post by: Rico on August 18, 2006, 09:44:06 PM
In the inguinal hernia, it will inflame or damage near by nerves, the pain felt from the hernia can be felt at where the nerves travel, such as the thigh of the leg.

Rico
Title: Pain
Post by: ComeBacKid on August 19, 2006, 02:54:39 AM
Howcanthisbe,

Its weird you say this, because I to have had this pain several times in the past, its not very common though, it kind of isn't centered at any one point but a shooting pain that seems to be in my testicle, thigh area, and up the side of my gut, I don't know what it is, I've had it for many years, it seems like I will get it maybe once every three months when I'm doing an odd stretch or stance, I always just figured it was pulling some muscle down in that area.  I saw your posted and figured I had to post on this, very strange the pain is, I couldn't even really describe it well, just that it isnt centered in any one area, but kind of all over.

Title: Hernia of psoas muscle strain?
Post by: Tim468 on August 19, 2006, 08:17:23 AM
The described pain could be due to a psoas muscle pull, or a nearby nerve impingement.
Tim
Title: Pain
Post by: mark501 on August 19, 2006, 11:30:31 AM
Howcanthisbe, I would suggest that you have a urinalysis & blood test asap to see if you might have an infection. I had similar symptoms recently and some of them went away after antibiotics. Also, I do have an inguinal (groin) hernia & am going to have laparoscopic (through belly button) surgery to implant a mesh in a couple of weeks. I did have some short lasting but stinging pain in inner thighs prior to taking antibiotics. My hernia surgeon told me that in some cases the weakness of the abdomen can be caused in part by a collagen disorder; in simple terms not enough collagen. This is of course just the opposite of the problem with peyronie's. Someones age or having a drastic change of weight can also be factors with hernia.  Mark501
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on August 19, 2006, 01:56:12 PM
thanks guys for the great replys. So do you think this is Peyronies Disease pain though? I mean this isnt a common type of pain with Peyronies Disease is it? Like I said I get no pain during erections or anything. If its aa hernia dont they have to do surgery on me? How can I get tested for a hernia? I woke up this morning and the pain wasnt there when I walked thank god. If its a hernia I guess its no big deal and I can get it fixed, Im more concerned this couldd be pain with peyronies dease, I just fear everytime I get this pain it could be worsening my condition or whatever, but when I first felt the pain I actually thought it feels like I have a hernia. I use to lift weights without a belt all the time. I would power-cling like 225 lbs 6 times without a belt sometimes ( like a rep off 6). This was back inn highschool when I was stupid and didnt think about the possible back damage it could be doing. I know when I lifted up some weights one day I got this pain, I cant remember when I first felt it though. Anyways I just hope its not related to Peyronies Disease, it doesnt seem like it would be since it only hurts at certain positions etc. I can jump up and down fast and hard witthout the pain, its only when I do the jumping jack motion that it hurts, it shoots from the thigh stright up the penis. ComeBackid, is yyour pain you think caused by Peyronies Disease or something else? Thanks uys for the great help, I hopee its just a hernia.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Caring on August 19, 2006, 02:53:54 PM
OK. THis may be obvious, but...GET THYSELF TO A DR.!!!!!
If it is a hernia, that is nothing to play around with. Get it repaired before it has the potential to strangulate and cause more physical damage that you dont even want to think about right now!!!  I have had this done 3 times, and it is not that big a deal. But it can be if left to it's own devices.
If it isn't... then you only have spent whatever your deductible is and you can relax. Plus, your DR will be able to diagnose. This forum discussion cannot replace any urgent medical attention one may need. At times we all need the expertise of a Dr. even if we dont generally like going to them.
Title: hernia/pain
Post by: mark501 on August 19, 2006, 03:33:34 PM
howcanthisbe, I forgot to mention that with laparoscopic hernia repair, they usually have you walking a few hours after the surgery. In most cases you can go home the following morning. They just want to observe you overnight; mainly to see that you are having no problem urinating. The recovery period is much shorter than the traditional surgery. Mark 501
Title: Re: Pain associated with hernia/Peyronies Disease
Post by: Old Man on August 19, 2006, 03:46:19 PM
HCTB:

The best advice for you right now is what Caring said....get to a doctor and quit worrying about your condition. When you know for sure what is causing the pain, then if necessary worry. However, worry will only increase the pain, so relax, get medical attention ASAP.

I have had numerous surgeries in my extended life including a double hernia patch with Goretex patch material. I was home in about 4 hours drinking a cup of coffee.

Best of luck to you, Old Man
Title: Go to the Doctor
Post by: Liam on August 19, 2006, 06:32:23 PM
HCTB,

Why don't you go to the doctor?

Liam
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on August 20, 2006, 01:29:46 PM
alright thanks all, im gonna go to the doc soon. Thanks for the great answers.
Title: Re: HCTB
Post by: Blink on August 20, 2006, 01:42:26 PM
Don'tcha just hate it when your friends all gang up on you? I'm with them, Get thee to da doc!   Keep the Faith...Blink
Title: Hernia
Post by: zigwyth on August 21, 2006, 01:57:33 PM
By the way. I had lower right inguinal laporascopic(Sp?) hernia surgery last Nov. Didn't do any research on the particular Surgeon, because of ignorance and it was work related. The clinic that we are sent to when we have on-job accidents had sent me to this guy. I just assumed I had to take this Surgeon.Well, after the surgery, not only did he not discuss the outcome with me or any of my family, (he was in a hurry), a disaster resulted. I had lost 2 pints of blood, 2 Blood clots eventually formed, one being in my lower extremeties. They sent me home 2 hours after surgery.Everything was Black and Blue for 2- 3 weeks, including my penis and jewels. I was rushed to an emergency room a few days after the surgery when I blacked out in a store parking lot.That's when they found out about the loss of blood and abnormally large clots. The surgeon simply told me that I needed Bloodflow to the extremeties. He told me to buy iron tablets and to masturbate. I did this, and I feel like I didn't get crazy with the Jerking, but that's when the"Pop" was felt. Now I have Peyronies. Of course he denies any wrongdoing, and that's O.K. My whole point to this matter is, with any surgery if needed, PLEASE research out the Doctors(history-how many operations have been successful, any malpractice lawsuits, etc) before making your choice and ask many questions. I wouldn't want anyone to go through what I did. Good Luck
Zig the Twig
Title: Accountability from Urologists
Post by: Tim468 on September 27, 2006, 08:23:45 AM
I have often thought that the Urologic community, and the "Peyronie's Disease" community (which I see as made up of patients and those who care about the affliction) should forge an alliance to provide better care for Peyronies Disease. The model I like to refer to is the Cystic Fibrosis Foundation (CFF) which helps coordinate clinical trials and sets standards for care that centers of excellence are expected to reach. Wouldn't it be nice to know that if you went to a "Peyronies Disease Center" you would get the same quality of care as at another place? To know that the care was good enough?

Well, the CFF has gone a step further. They now are going to provide outcomes data on how centers do - so you will find out precisely where your docs stack up against others. Here is their latest press release. If only the urologic ommunity could step up to bat like this...

The CF Foundation plans to release center specific health outcomes data for care centers (pediatric and adult programs) and affiliate programs in December 2006. The data will include outcomes for children and adults in the following areas: lung function, nutritional status as measured by BMI, percent of patients screened for CF-related diabetes, and proportion of patients who meet guidelines for visits, PFTs and cultures.

The pulmonary and nutritional outcomes will be adjusted for the following characteristics of a center's patient population: pancreatic status, age distribution, gender, race/ethnicity and household income estimated by U.S. Census zip code data.

The data will be posted on the CF Foundation's Web site (www.cff.org). By sharing this information with the CF community, the Foundation hopes to strengthen the partnership between care center teams and their patients and families, and continue to accelerate improvements at all CF care centers.
Title: Do I have Peyronies??
Post by: snarf on September 28, 2006, 12:32:06 PM
When I was about 14-16 (can't remember exactly how old), I specifically remember being in an erect condition when I laid on the bed stomach down.  I felt a non-painful tearing.  At the time I thought it was a good thing because I was always embarrased of getting erect in jr high so easily. 

Now in my adult life (now 29), I find that I may have Peyronies disease.  When I'm fully erect, I do have a curve in my penis, which is more like a banana, and not the sharp elbow joint shape shown in illustrations.  In addition, I seem to not have a bloodflow problem or with normal ejaculations.  Perhaps it does take more to stimulate me because of the curve and the reduced exposure to sensitive tissue, but I have no way to make a comparison.  I appear to have normal sexual function.  I have no pain.

What I do have a problem with...

From what I have read, I seem to have a shape problem, but not the pain some people allude to.  Also, I cannot see any kind of tissue discolorations on the top of my penis (it bends up).  It seems like the whole shaft is uniformaly sloped, and bone-hard when erect on the top side.

Do I have Peyronies Disease or something else?
Title: An Opinion Without All the Facts
Post by: Liam on September 28, 2006, 09:30:49 PM
Snarf,

No.  The things you seem to have a problem with are things I remember from long ago (Pre-Peyronies Disease).

But, a Doctors opinion based on an exam and medical history would be better.
Title: Re: An Opinion Without All the Facts
Post by: snarf on September 28, 2006, 09:34:59 PM
Quote from: Liam on September 28, 2006, 09:30:49 PM
Snarf,

No.  The things you seem to have a problem with are things I remember from long ago (Pre-Peyronies Disease).

But, a Doctors opinion based on an exam and medical history would be better.

Are you saying that I might get worse, and eventually get Peyronies?  I hesitate to go to the doctor because of my position in the federal government.  I may be dismissed from my occupation if I am diagnosed with certain conditions.  I don't know if they will consider this purely cosmetic, since it really only affects my sex life at the moment, or if it will disqualify me.  So I'd rather keep this anonymous and away from the doctors I would normally see.

Thanks
Title: Re: Re: Snarf - Do I have Peyronies Disease?
Post by: Hawk on September 28, 2006, 10:13:57 PM
I have never heard of a single soul being dismissed from any job (except maybe porn star) for Peyronies Disease.  Additionally, HIPAA severely limits who can access personal medical information.  None of us (or even a urologist) can diagnose you over the Internet.  Your symptoms as you have stated them don't sound typical for Peyronies Disease.

I think most men have trouble urinating with a raging erection
Your curve sounds like it has been there and been stable all your adult and your adolescent life.

never the less, only a "qualified urologist can be sure.
Title: Flaw in Logic
Post by: Liam on September 29, 2006, 05:54:01 AM
QuoteAre you saying that I might get worse, and eventually get Peyronies?  I hesitate to go to the doctor because of my position in the federal government.

Snarf,

What do you see in what I wrote that would make you think I was predicting you might get Peyronies Disease?  You might get hit by space debris. You might win the lottery.  I didn't say those , either.  "Might" covers  many things.

One thing it does NOT cover is losing a government job.  Hello, they can't get rid of incompetent employees whom they have a reason to fire (and never should have hired) :). 

If it is an elected position, look at our poster boy (Lord help us), Bill Clinton.  Do you remember Paula Jones and her talking about his "curved penis"?  Well, he served out his term.

One other suggestion, see a different doctor in a different town.


Title: Re: Testosterone Numbers
Post by: Power on October 13, 2006, 05:31:53 PM
Hey Guys,

Can anyone make sense of these results. What do they mean.

Testosterone, Free, Direct    13.4
Prolactin                             6.2
Luteninizing Hormone (LH)     3.2

Are these normal. I'm 24 years old.

Power

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on October 13, 2006, 11:18:44 PM
To answer your questions, I would need to know the units of measurement, and the range of normal for that lab.

Tim
Title: Testosterone
Post by: ComeBacKid on October 14, 2006, 04:57:49 AM
Power,

I just got another testosterone test done today with LH and Prolactin and a whole list of other things.

My first test came back at 198, I requested it after having absolutely no daytime erections spontaneously.  After going on lexapro for a year my sex drive diminished, I was also drinking heavily which can effect testosterone.  When my Peyronies Disease worsened a year after stopping lexapro I lost all daily erections.    Today I got the test done again except that had to take three tubes of blood and I got dizzy and almost passed out, I had to lay down for awhile to recover, as they wouldn't let me walk out of the place, cause they took to much blood.  After I recovered they informed me they needed more for the plasma test, I just told them I'll pass and said I didn't want it, I was kind of irritated.  I'm done with the blood tests for now, thank god, hate them won't ever get one unless its absolutely necessary.

Your numbers need to be converted into a three digit number for testosterone I believe to compare your data, if you got test done good work you want to examine your condition as much as possible.  Have you had an ultra sound done?  I'm getting this done when I go to visit Dr. Mulhall.  This will add to your data collection, it should be done for anyone with peyronies.

ComeBackid
Title: Hematospermia?
Post by: Steve on October 16, 2006, 10:36:52 AM
Anyone ever hear of this???  I masturbated today, and the ejaculate came out blood red with a browinsh lump in it!!!!!  The lump looks like a blood clot as far as I can tell. 

Needless to say, I'm kinda freaked out :o

I did a quick google search, and found 'Hematospermia' as the probable diagnosis, but that basically means 'blood in the seminal fluid' -- very non-specific!  To make matters worse, I saw the same cause as my Peyronies Disease -- 'Doctors are unsure of the cause of Hematospermia...'.  GREAT, here I go again!!!!!  It did say that less than 1% is caused by cancer...I'd be much more comfortable with less than 0.000000000001%!!!

I've already got a Dr appointment set up for tomorrow morning (set up last week for a normal checkup), so I'm going to bring this up and see what he says.

Any comments Tim (our local Dr on call)?

Steve
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Hawk on October 16, 2006, 10:56:18 AM
Steve,

Guessing here, but the brown is possibly old blood and the red fresher more recent.  The only thing I can add is that the prostate produces seminal fluid and pushes it into the urethra during ejaculation.  it is not a very long trip.  Also, after leaving the prostate, it does not encounter a lot of other complex structures so guessing, I would say you may have a prostate problem.  After a prostate biopsy, you ejaculate crud such as you describe for several weeks.  One bad event in the prostate is enough to effect the content of seminal fluid for some time. 

I would think this could be triggered by a bad infection, injury, hard off road bike riding, or something more sinister.  It could also be just a small ruptured blood vessel along the way.  You are wise to see a doctor and closely monitor this, even though it could be and hopefully is something minor.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on October 16, 2006, 12:36:00 PM
Answered in PMs.

Could be bad, probably isn't. See the doc and get it checked out.
Title: Re: Cooking Tips
Post by: Mister Dillon on October 16, 2006, 07:45:35 PM
Rico and Hawk

I would love to see a new topic on an anti inflammation diet.  I would even buy a book by Rico.

Mister Dillon
Title: Re: Anti-inflammatory foods ...
Post by: George999 on October 17, 2006, 05:12:10 PM
My favorite in this category has to be Mangosteen.  Expensive, but it doesn't require more than a couple of tablespoons to do the job.

- George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: wasa on November 02, 2006, 09:06:31 AM
Hi,

I also don't know if I have peyronies or not. I already went to three urologists, and none was particularly interested in finding out it seemed. None of them was very keen on doing ultrasound to see what it was. They all seemed to say it wasn't peyronies, as they couldn't find any hard plaque like tissue. But the fact is that my penis has reshaped during the last 2 years, it has A LOT of new veins (they always start small reddish, purple coloured and eventually develop into big, rather broad blue veins) all over (sides, front) and since 4 months or so it has gone upwards, so now my penis in erection looks very much like a banana. The last urologist said this could be normal, as a penis can change in size during the life, especially if you're young. I'm 25 now. But i still haven't got any clue as to what it is. I have been looking up on the internet and I read about Mondor's disease. Does anybody know if my description sounds familiar for Mondor's? I haven't been able to find any picture about it.
Another diagnose i might think of is that all the new veins on the base of the penis cause it to bend upwards when it gets erect. but i wonder what could be done about it then..

Thanks for any help you might give, as I'm quite worried..


Title: Re: Wasa
Post by: Hawk on November 02, 2006, 09:21:38 AM
Welcome to the forum Wasa.  As you might guess, if 3 urologist are unsure after an examination, we are likely to be more unsure but I do have a few questions.

Have you had any pain or tenderness, or erectile disfunction?

Have you been using any perscriptions or significant over the counter products?

Have you had any injury?

Do you have any other health issues or symptoms?
Title: HELP! Peyronies Disease in 22 year old?
Post by: johnnyboy on November 02, 2006, 12:14:58 PM
I'm going to tell my story here and hopefully whoever reads it can give their input...

I'm a 22 year old and I think in the past week I have contracted Peyronies Disease.  One week ago today my penis suffered some probably unneeded trauma.  I masturabted for a good long while, thinking nothing of it really.  A few days after I noticed firm tissue inside my penis when limp.  When I peed it was usually normal, but I've noticed that the head of my penis is cold pretty much all the time.  When I get an erection it is of normal firmness and length, BUT getting to erection is slightly more difficult due to the "bottleneck" or "hourglass" that forms.  That eventually fills out and a normal erection forms.  I have masturbated since I've noticed this problem, and honestly I think I made it worse.  I noticed a small indentation on the side of my penis closer to the head. Today I noticed my penis slightly hurts when I walk and it rubs against my boxers/pants.  I have been up for 24 hours now (damn exams).  No sleep certainly hasn't help.

Is this Peyronies Disease?  Is pain on the way?  Is cervature coming?  Am I doomed?  WHAT CAN I DO?!

I am going to a urologist next week, so that is good, but what should I do in the meantime?  I bought a big bottle of Vitamin E and started taking 800UI today.  I want to attack this aggressively and hopefully cure it 100%.  Is this realistic?  I pray that the doctor can help me, but from what I've read online, doctors haven't been the most helpful.

HELP?!
Title: Re: Johnnyboy
Post by: Hawk on November 02, 2006, 03:06:29 PM
Johnnyboy, welcome to the Peyronis Disease Society's forum.

Your symptoms sound like classic Peyronies Disease symptoms.  Fortunately, you are getting information early on and not after 3 years of killing time. You are following the right course in seeing a GOOD urologist.  Your age makes you more likely to recover, especially if you know your were rough and this is from direct trauma to your penis.   In the very short term, my personal plan would include the following.

Take an anti-inflammatory like ibuprofen
Throw the vitamin E you have away and get one with a full spectrum tocopherols (Gamma, Beta , Alpha)
Take acetyl L-carnitine 3000 mg per day (split it into 3 doses with meals)
Do not treat your penis like it is indestructible.  If it is uncomfortable, don't do it whether that is wearing tight jeans, bull riding, or sex.
Get as much rest as you can (7-8 ) hours per night and de-stress your life

I am assuming you still get night -time erections and occassional random day time erections.  If you do not then there are a few additional things I would recommend.

In the long term there are several other things you can do such as recommending prescriptions to your Uro and some lifestyle changes like not smoking, but I would start with the other things now and start reading the forum.  I would start with "Oral treatments" and "Alternative treatments"

This is no more that my personal plan that I would follow.  I am not an expert or a trained medical person.  Others likely have different views.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: johnnyboy on November 02, 2006, 06:02:29 PM
Hawk,

Thanks for the advice.  I'm actually meeting with a uro that specializes in Peyronie's.  I am not getting night time erections or random day time ones.  The only time I get them is when I work for it.  I also feel like more and more of my penis is hardening when it is limp.  I am really starting to freak out.  The head of my penis also seems to be cold all the time.

be honest, does this look really really bad?  I think this whole thing was caused by some form of trauma.  I am young, healthy, but I do not get 8 hours of sleep last night.  What would you say my chances are that my penis will be back to its old self 100%?  How long will it take?
Title: Cold Penis
Post by: Liam on November 02, 2006, 06:21:48 PM
Johnnyboy,

That is a new one to me.

Trauma may cause a temporary lesion and then resolve itself.  It may also lead to Peyronies Disease.  Only time will tell.

BTW, did you notice any discoloration or swelling?


Title: No discoloration
Post by: johnnyboy on November 02, 2006, 06:28:43 PM
No discoloration or swelling at all.  I did notice a small, not thick bump on my penis as well as a small indentation on the right side slightly below the head.   I am worried that I am gonna start to get indentations all over the place.  I think more and more of my flaccid penis is getting harder too.  I am really starting to worry.  Does this sound like Peyronies Disease or just a response to trauma + masturbation after trauma?
Title: Re: No discoloration
Post by: Mr BLBC on November 02, 2006, 07:42:49 PM
I dont believe that I've read anything that indicates masturbation is a cause of Peyronies Disease, infact getting good blood flow and giving your self gentle massage is encouraged....:)

At least in my world......




Quote from: johnnyboy on November 02, 2006, 06:28:43 PM
No discoloration or swelling at all.  I did notice a small, not thick bump on my penis as well as a small indentation on the right side slightly below the head.   I am worried that I am gonna start to get indentations all over the place.  I think more and more of my flaccid penis is getting harder too.  I am really starting to worry.  Does this sound like Peyronies Disease or just a response to trauma + masturbation after trauma?
Title: Re:Mr BLBC/Johnnyboy
Post by: Hawk on November 02, 2006, 08:59:31 PM
Mr. BLBC makes a good point.  Since you made the statement you caused some unneeded trauma, I assumed you had reason to make that statement without getting into details. However, conventional masturbation would not likely cause trauma. 

I want to be clear also that no one can possible calculate chances of recovery.  Your odds are better than most of us here.  Even if odds were 90% of total recovery, it does not tell you what will happen with your particular case.  If we Assume you have Peyronies Disease, remember, your odds of getting Peyronies Disease at your age were probably less than 1%, but those statistics were of no benefit to you. Try to be calm and take comfort in the fact that you are doing all you can to combat this and that you have found a good source of information and support.  There is nothing you can do more important that not obsessing over this even though it is understandable that you are very concerned.

There are several men here your age.  We are all here for you and you will get through this.  When I was diagnosed with prostate cancer 2 weeks after I took an early retirement, I was told I had a 50 % chance it could reoccur.  To cheer me up the doctor told me a truck could kill within the next 2 or 3 years and none of that would be a factor even if it was to return.  I guess my point is that your worst fears could in theory come true, BUT there are far worse things to worry about if you want to spend time worring about bad possibilities.    Enjoy what is right, and don'tt live in dread of all that could possibly go wrong.   ;)

Title: Re: JohnnyBoy
Post by: ComeBacKid on November 02, 2006, 10:09:37 PM
JohnnyBoy,

If rough masterbation caused peyronies, there would be a lot more people who had it my friend, although how many people have this disease worldwide... whos counting?  You may want to check out pentox, its very safe, and studies show its effective at helping get rid of the plaque, even with calcifications.  You seem to be getting the same shrinkage/hardening effect I got, the harder the tissues get the more I'd be willing to bet you have a calcification.  An ultra sound would help determine this, I will be getting one soon.  See if you can get one of these when you visit the urologist.  Feel free to PM me again if you have any questions.

ComeBackid
Title: Re: ComeBackid
Post by: Hawk on November 02, 2006, 10:23:47 PM
Not sure if you are aware ,but my understanding is this just began last week.  If so he would not be getting any calcification anywhere near this soon.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: johnnyboy on November 03, 2006, 01:13:05 AM
Thanks for all the responses!  i really think it was a long, rough mastubration session that did this.  But saying that masturbation doesnt cause Peyronies Disease is good news to me, but who knows.  This looks like Peyronies Disease and I really need to get on a very serious regimen.  I'll see what the uro says. 

I did notice that when limp my penis is beginning to hang slightly to one side.  It seems to stay in whatever position I place it in.  I believe that this will lead to curvature. 

Keep in mind this all happened in the past 7 days.

Doc i spoke to on phone suggested some sort of injection, once a week for 12 weeks.  should last 2 years, about 70% "success" rate.  I don't recall the name.  any thoughts?

How can I get more blood flow down there?  the head of my penis always seems cold.

THANKS in advance, i'll be sure to report my findings from the uro.
Title: Hanging Around
Post by: Liam on November 03, 2006, 06:47:52 PM
JB,

QuoteI did notice that when limp my penis is beginning to hang slightly to one side.

As opposed to.........

QuoteIt seems to stay in whatever position I place it in.

As opposed to.........


I may be getting old and stupid.  But, isn't that what penii (plural of penis :)) do?

If a doctor suggests something on the phone, I would take it with a grain of salt.  He has not even seen you.  I am amazed that you were able to talk to a doctor on the phone.  WOW  They don't do that around here unless you are a family member or in their golf foresome that day.  This miracle shot of which you were speaking does not exist, at least,  as described (read the Verapamil section).

Many people have trauma to the penis.  Not all get Peyronies Disease.  Peyronies Disease may be thought of as the response to the trauma.  So saying any trauma is the cause of Peyronies Disease is not exactly accurate.  Also, the source of the trauma (long, rough masturbation) is inconsequential.  If you had a sports injury or the trauma was from the use of a medical clamp, the results, or lack of results, would be the same.

Keep in mind I am not a urologist and I have never met you.  But, you have a good chance of not having Peyronies Disease.  I have never heard of nor can I imagine Peyronies Disease coming on then progressing so fast.

As for cold penis, try Rico's warm epsom salt bath.  They're grrreeeaaat :::ala Tony:::.  :)

BTW, are you taking midterms already? 
Title: Re: Hawk
Post by: wasa on November 11, 2006, 08:58:16 AM
Thanks for replying Hawk.

I can't say that I have any problems with erectile dysfunction. I get healthy erections every night & morning. Actually it's even quite the opposite, I seem to be getting erections much easier, and sometimes (like at work) that isn't such a good thing, especially because the curve makes it harder to hide it. In other words it gets erect quite easily.

I have looked some more on the issue, and I found a picture that is actually very similar to my curve. Look at the second picture, I think mine is maybe a bit more bend upwards. http://en.wikipedia.org/wiki/Peyronie's_disease (http://en.wikipedia.org/wiki/Peyronie's_disease)

There it states that it's not peyronies but a normal curve. Still, I don't know, its very strange that all of a sudden the bend forms. I do think I had a small trauma due to a very long/intense period of masturbation about 1.5 years ago. There was just some redness on the start of the base of the penis, it went away and it didn't feel that painful either. After that (during the following year) the penis did become more 'floppy' (when flaccid point to left, right, it's like i had no control over it, still feels like that but less these days). Also while getting erect, it didn't happen simultaneous, so it looked and felt a bit strange when getting erect,  that worried me. When fully erect it was just very normal, and perfectly straight. About 3-4 months ago during the summer a curve developed, not at once, but in one month the bend was there, and still is to this day. I do think my penis also looks a lot different in flaccid state (a lot of prominent veins all over the place, lots of small ones and constantly changing in look, some slight 'bumps' at the sides of the penis if you call it that, it's like the blood is a bit thicker there).

I don't know, if you ask me i think I somehow 'damaged' the base or the ligament of the penis, and the penis is somehow adapting to it. Unfortunately this results in the bend. But i'm just guessing here..

I have no heriditary diseases or anything. It's the first time i experience some physical problem. And it bothers me as it the curve does (slightly) hinder masturbation/sex. It just felt better when the penis was perfectly straight..







Title: Hematospermia update..
Post by: Steve on November 15, 2006, 12:35:34 PM
Thought I'd bring Hawk and Tim up to date with my bout with Hematospermia...

I had my Dr visit the next day, and explained the symptoms to him, so he set me up with another visit with my Uro.  He also tested for blood in the urine, and sure enough, there was a lot (his term).

So, I visited the Uro, and he was much more concerned with the blood found in the urine than in the seminal fluid, and set me up for a CT/IVP (CAT scan and an X-Ray), and visit up inside my bladder.  The X-Ray and CAT scan showed nothing unusual inside (although I did bleed all over the floor after the IV for the contrast dye was pulled out).  Then came the scope (I've forgotten just what exactly it was called).  It was extremely uncomfortable when the scope passed through the Prostate, but again, the Uro didn't find anything to be concerned about.

Bottom line (HCTB and other's who're doctor shy please take note) a visit to the doctor, while not always the most enjoyable experience, did a great job of alleviating my fears and concerns.  That plus the fact that if there was something wrong, it would have been caught at the earliest possible time, when the most can be done for it.

Thanks to all for hearing my bell ring, and I've still got my ears open for yours...
Title: Re: Name of scope
Post by: Old Man on November 15, 2006, 01:14:24 PM
Steve:

The name of the scope is cystoscope. It usually hurts a little when the end of the probe passes through the prostate area. Most of the time the "neck" portion of the prostate in older guys is shrunken down somewhat and this is caused by the prostate being enlarged as we grow older.

I have had many of the "scopes" done durng prostate cancer surgery and the exams leading up to it. One never gets "used" to it as each insertion of the probe might be handled different by nurses/technicians or doctors.

Sometimes the bleeding that you had was a result of the probe being forced through the shrunken area. It heals fast, but if bleeding continues for a few days afterward, you should return for a checkup by your uro or MD.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newbie on November 24, 2006, 07:42:20 PM
New Member...
Hello,
I have been reading the forum for about an hour and find it helpful. The one thing that seems most clear to me is that there seems to be a lot of frustration.

Here's my story...
I am 31. I have had this for about 1 year. I have one fairly large and hard nodule in the middle of my shaft which causes a slight indentation on the top of my penis. I have another softer nodule on the left side (beneath the head) which causes a narrowing on the same side just above the nodule. It seems that my erections are not as hard as they used to be and don't last as long either. I have been to a few doctors. The one I have been going to lately here in NY seems very well qualified. He, just like the last doctor, put me on Colchicine... this last time for 90 days. While I was on it no more nodules formed and the erection quality seemed to improve very slightly. Now that I am off it it seems like another nodule (or two) is forming.

Does my story seem typical?
At this point are there any steps I should be taking to halt the progression?
Any advice would help!

btw... my doctor seems to think that collagenase (pill form) will be available this spring. But from what I have been reading on the net it seems like it will be a much longer time?

Newbie
Title: What if no plaque?
Post by: NewlyDxd on November 25, 2006, 10:18:15 AM
I was diagnosed yesterday by my family physician as having Peyronies Disease but he did mention that he can't be sure if it's congenital or if theres a calcification/plaque.  I'm going to a urologist soon to determine whether there is one or not...If there is no plaque, what treatment options are there other than surgery?  I have downward curvature which makes sex with my girlfriend difficult. 
Title: Any advice for someone about to be diagnosed?
Post by: howtofixme on November 26, 2006, 06:44:10 PM
Guess this is a good place to say hello.

I'm a 55 yo w/m with a 40 yo wife.  My penis has always curved downward a bit but in the last 6-12 months it has developed an almost 90 degree bend downward and I can feel two little lumps on each side near the bottom.  I can't call it "pain" but I sure have some "discomfort" with erections and sometimes even without.

I finally made an appointment with a urologist for this coming Friday and dreading it like the devil but I feel like I have read enough to know that I do have Peyronie's disease (unless it is something worse--which, at this point, I prefer not to think about).

Can anyone tell me what I might expect at a first visit to a urologist?  I want to get my money's worth as my insurance does not cover "erectile disfunction."

I'm looking forward to this forum.

Good luck, Guys--and the Ladies who are affected as well.
Title: Dr. Visit
Post by: Liam on November 27, 2006, 07:06:31 AM
HTFM,

He will get some history, examine and palpate, then prescribe.  There is usually very little discussion.  I attribute this to two factors.  There is not much to say and talking takes time (note just a hint of cynicism).  If he does more than this, you have a winner.  If not, it doesn't mean he's a bad doc.  He'sjust not up on Peyronies Disease.

Go with info in hand.  Bring info on VED and pentoxifylline (Trental), viagra and l-arginine.  Be ready when he offers vit. E and Potaba.

Also, tell the doc you want to get your psa (prostate) checked .  That is covered by insurance and you need to get that done anyway.  He should bill under that code.  Ask him to bill under that code.
Title: Uro visit
Post by: Steve on November 27, 2006, 09:53:48 AM
One more thing to expect on your Uro visit...

On my first visit with the Uro, I was so focused on my Peyronies Disease, that I forgot what Uro's do best...check your Prostate!  Yes, a PSA test will be a good idea, but a Uro will most likely want to do a digital exam (digital as in Finger :o).  If you're not expecting this (as I wasn't) or have never had it done, it comes as a bit of a surprise.

Just wanted to give you a heads-up (or perhaps a tails-up  ;D).
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howtofixme on November 27, 2006, 03:46:10 PM
Thanks for the encouraging replies.  I'll post Friday after my appointment.
Title: DRE
Post by: Liam on November 27, 2006, 09:27:17 PM
OK Steve,  Just ruin the surprise  :). 

HTFM,

Start warming up on "Moon River".
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howtofixme on November 27, 2006, 10:13:02 PM
Come on Guys!!

I was a Marine almost 40 years ago.  I know the turn your head and cough routine and the DRE.  Heck, if it were a cute little young urologess I might even...well, never mind that.

Seriously, though, the kidding keeps things light and although I am not looking forward to all the poking and prodding at least I am not dreading it like I was.

Might even save my life someday!

Thanks again.
Title: Saved Life
Post by: Liam on November 27, 2006, 10:23:41 PM
I picked on my friend after my prostate surgery last year.  I bugged him about getting a prostate check up.  Long story made short, he had a radical prostatectomy 2 weeks ago and is doing great.

The odds are against having PC.  But, if you have it, early detection will save your life.

My doc says he has the worst end of the DRE  ;).

GOOD LUCK!!!

Liam
Title: Just Got Peyronies Disease - Need Advice
Post by: gibson101 on November 27, 2006, 10:50:48 PM
Greetings

I have suffered a injury to my penis within the last month. After much research I believe that it is Peyronies Disease. My penis is shrinking. it is a lot firmer when placis and when it begins to get erect it tightens near the tip(this sometimes does not happen) . The other day though I had a spontaneous erection that would not go away and so I masturbated and this seems to have aggravated the injury alot. The head is number and the penis is harder. Does anyone have any advice I know there are no cures and I am raced for the worst but I believe it is still fresh so maybe I can still do something early on to help it. Got appointment tomorrow with urologist but I went to him first week of this and he told me nothing was wrong so cant really trust him. Has anyone made a recovery from something similar at all??or heard of someone who has.

Regards to all
D
Title: Please provide more details
Post by: ComeBacKid on November 27, 2006, 11:02:48 PM
Gibson,

I also suffered an injury and had very similar symptons compared to you.  Why don't you tell us about your injury, what exactly happened, try to go into as much detail as possible.  I would see another urologist, not just one, I've had 2 diagnose me with peyronies and 1 who didn't, a lot of doctors know nothing about peyronies. 

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: gibson101 on November 28, 2006, 02:58:55 AM
it is really embaressing to be honest. I experimented with a few penis enlargement exercise that are a complete hoax but at the time seemed real harmless. I only did them on one occasion too. It envoled pulling on the flaccid penis but this is not what injured me. The 2nd exercise i tryed is called jelqing. It is basically milking the semi erect penis. The problem is I did it to hard and I think while pushin the blood towards the tip I damaged the tissue and most probaly all around the penis which is the worrying part. I was seeing improvements until I masterbated the other day which seems to have significantly worsened the situation. So that is my story. Feel like a complete and utter fool. Not sleeping at all and have lost my appitite completly
Title: Misconceptions
Post by: Liam on November 28, 2006, 06:42:26 AM
Peyronies Disease is not an injury to the penis.

It is the underlying condition which causes plaque formation.  This condition may become apparent after trauma to the penis.

You can have scar tissue and not have Peyronies Disease.

An injury to the penis can heal.

You can trust your doctor.  Peyronies Disease is not a hard (no pun intended) diagnosis.

Liam
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: gibson101 on November 28, 2006, 07:54:12 AM
Thank you for the advice

If is not Peyronies Disease and only scar tissue can this be cured at all with oral medications?? From what ive read here on forums I have all the symptoms of Peyronies Disease but it could be scar tissue tryna heal and i didnt help it by ejaculating.Am I correct in saying tha Scar tissue can cause shortening though wheter its Peyronies Disease or not??

Regards
Title: Hi Forest
Post by: Steve on November 28, 2006, 11:12:35 AM
:o Whoa! Where'd you go???  As soon as I posted this, Forest's post disappeared!  I assume that Hawk moved it?

Let's see...you're here at the right place; looks like you're typing correctly...yep, I think you're doing the posting correctly ;D

The more you read here on the forum, the more you'll find that there are a few 'favorite' treatments, and a lot of discussion on why each type of treatment does or doesn't work for someone.  Bottom line is that we're all still searching for the Silver Bullet to stop this affliction.  One thing's for sure that I've found is that it won't go away overnight!  That being said, there's a lot of improvement being reported over in the VED thread (you might want to check it out) and there's always a lively discussion of the benefits of using a full spectrum Vit E and other supplements/drugs.

Keep reading all the forums, and you'll get a lot of ideas of how to try and treat your condition, and quite a few ideas on what to avoid.

Most of all, you've found the right place to get support and free advice (which sometimes is worth exactly what you pay for it and other times is priceless).

Welcome to the group.
Title: Re: Forest
Post by: George999 on November 28, 2006, 12:28:17 PM
I think he ended up on supplements!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: forest on November 28, 2006, 01:36:05 PM
Yea, Hawk is helping me out and put my post over on supplements.  Thanks for the welcome Steve.
Forest
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: gibson101 on November 28, 2006, 01:47:51 PM
Can someone pleaser advise me. I went to urologist today and it was not so great. He cant see any symptoms i.e. bumbs,plauge that would indicate Peyronies Disease but my penis has shrunk. He says it may be from not getting erections or masterbating as I thought it would be wise to give it a break. Do anyone here have any light to shed on this. The shaft of my penis is way harder even when flaccid and shrinking. Does anyone know wat this could be? Maybe pchycological??

regards
Title: Re: Gibson
Post by: ComeBacKid on November 28, 2006, 02:29:50 PM
Gibson,

I suffered an inury, serious blow to my penis, it hurt badly.  As a result of this injury I ended up with peyronies disease.  If you have just a normal scar it would naturally heal itself.  It is very unclear what exactly peyronies disease is and what it does.  Mine was clearly more than a scar as it spread slowly over time, I developed a bend in the erect and flaccid state and lost size overtime. Now I have partial ED, loss of size in erect and flaccid states, and bend and twist of the whole shaft in the flaccid and erect states.  Most doctors will have nothing more to offer you than vitamin E.  I would still see another doctor and try to get a diagnosis.  I went to one doctor who said I clearly have peyronies and he could feel my plaque, that was back when it was in one spot.  Since then it has spread over my entire flaccid penis.  I just recently went to Dr. Mulhall and he said I wasn't really losing size, I told him I lost a full inch in length and serious girth length, he said it was my imagination, I told him I measured and he said well it could be peyronies.  The hard truth is even these doctors really don't know, in fact this top urologist wouldn't even acknowledge there was a study with pentox going on.  I told him the literature stated it helped a guy and he said that was false.  I told him I'd mail in the literature to him, he said verapamil injections are the way to go early in the disease(he seems to promote his own treatment idea).  He also said the VED will do nothing to make the penis bigger in the erect state, I have now talked to several people who have used the ved and have said otherwise.  Clearly some doctors are out of the loop, they think they know a lot about peyronies but they don't, there is much that is unknown about this disease.  Lucky for you we are here to help.  Whether you think you have peyronies or not you should treat it like you do in my opinion, you can't risk it getting worse trust me.  See another urologist who deals with peyronies and see what he says.  Pentox / L Arginine/ and Viagra is the hot new treatment protocol along with the VED which has a good record from our members of restoring lost size.  Chances are if you have a bend and your penis is shrinking you have peyronies, you can attack it or do nothing and watch it get worse.  I sent you a PM check your mailbox. Oh , and assuming your in good health with no problems, taking pentox/ larginine/ viagra can't hurt you.

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: gibson101 on November 28, 2006, 03:46:26 PM
Could anyone from London please contact me.

ComeBackid did your injury develope a hardness around the flaccid penis. Mine is extrememly ridgid at the moment and I can feel the whole thing retreating inside. I know that if plauge developes all around the penis it will shrink. Does anyone here know if it is advicable to  try and masterbate as I am afraid this will just worsen it.
Title: Masturbation
Post by: Liam on November 28, 2006, 08:05:03 PM
What is with all the talk about masturbation?  Do you really need to ask?

QuoteHe says it may be from not getting erections or masterbating

Huh?  That is just plain silly.

First a doctor would have no objective measure of size loss (no baseline).  Second, to suggest those two things as causes of size loss is laughable.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Ray on November 28, 2006, 08:26:14 PM
I am close to having to make a decision on surgery. I've don the Vitamin E, Collichin and Varapimill injections. I believe I have a good doctor(Cully Carson), but am nervous about making the decision. my curve is about 45 degrees but and it has deminished the size significantly. Would like to know from anyone who has ben through the operation.

Ray
Title: Re: Gibson and Ray
Post by: ComeBacKid on November 28, 2006, 09:42:25 PM
Gibson

Light masterbation shouldn't make your peyronies worse, and erections... you need them to oxygenate the tissues.  Some people believe without erections that more collagen will develop, we have a good paper in our research library that hawk posted, check it out.  The only problem with this theory that I have is that there are millions of men worldwide who are older and probably don't get erections much at all daily but they don't have peyronies.  You see there are so many variables with this disease and so many different cases.  Yes I have lost size my friend, its spread around my entire penis.  Hardness is exactly it, its not flexible, feels like a cast on my flaccid penis, it does not hang it points straight out kind of and to the right when flaccid. 

Ray- Make sure you take our verapamil injection poll if it is up, I don't know if hawk has it active or not.  Out of curiousity did the injections help you at all?  My personal belief is that verapamil will do nothing for peyronies, the urologists keep doing the injections cause they have nothing else to offer, in fact in our own poll a lot of people on the injections got worse.  Share your results and hopefully we can get you to enter in ur data in our poll.

ComeBackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Ray on November 28, 2006, 10:11:30 PM
ComeBackid

The injections did nothing at all.

Ray
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: gibson101 on November 29, 2006, 08:28:51 AM
Greetings
Has anyone here succesfully regained some size after suffering from Peyronies Disease??? Is the ved/traction method the only hope even though it may not work!! I already have a smaller penis and if it shrinks more I am finished. HELP!

Regards to all
D
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Ray on November 29, 2006, 09:02:10 AM
HI

Has anyone had the Horton-Devine method of surgery with success. My curve is about 45 degrees and has caused what seems to me considerable shortining. I have researched on line and I'm still undecided and confused. My Dr. has written several papers on this and seems to be well respected in this field. I have done the Varapimil injections, Colchicine, vitimin E and several other oral non perscription pills. This has been going on for 2 years. I'm 62 years old in good shape (exersise 4 to 5 times per week) and still like sex.

Ray
Title: What to do in the mean time?
Post by: johnnyboy on November 29, 2006, 06:52:17 PM
(22 years old, good health)

Hello again,

I went to a urologist (Peyronies Disease specialist) early November.  He said to me "I really doubt it is peyronie's."  Good news that day and I made a follow-up appointment for mid-late December.

At that appt he gave me a physical examination and said it is probably nothing, but gave a 2 week anti-inflammatory rx just the same.

I'm still worried that I might have Peyronies Disease and I want to know if I should be doing anything in the meantime to counteract the possible disease in its early stages.

Physical description:
Normal erections, BUT:
-I notice that while sitting down my erection goes slightly to the left (starting from the base)
-Slight indentation on the right side of my penis while erect.  Feels like the hard part of the penis has a dent in it (not very noticable, closer to the head)
-When the penis fills up with blood for an erection there is SOME hourglass formation before full erection.  Not painful at all, not very constricting either.
-Perhaps most worrysome, when the penis fills up with blood, when it is about half erect, there is a slight bend to the left at the middle of the penis (at the hourglass).  The penis doesn't fill up with blood uniformly, but it does fill up fine.  Could this be a plaque forming?  I've tried to feel it out, but I'm not a urologist.
-Left side of the penis (where the possible plaque may be forming, seems harder than the right side (erect and flaccid).  Could be my imagination, I don't know.
-Overall, when the penis is flaccid, it seems slightly more firm than before.  If I put it in a certain position, it kind of stays that way slightly.  In other words, it doesn't just flop back to normal.  It kind of has a tendency to whatever position I put it in.


So, given all of my descriptions, albeit not the best, what do you think I should do before my next appt in about 3 weeks?

Thanks for reading.
Title: JB
Post by: Liam on November 29, 2006, 09:18:59 PM
Follow your doctors orders.  Study hard.  Take it easy and don't worry.

I see people posts how hard it is to diagnose Peyronies Disease.  I disagree.  Palpable plaque should be present.  There are always exceptions.  But, they are just that, exceptions.

It is also possible to get Peyronies Disease when you are young.  But, this, too, is an exception.

The urologist could make a mistake.  Again.....exception.

The odds are in your favor.
Title: Diagnosis
Post by: Hawk on November 29, 2006, 09:58:54 PM
I have to a difference of opinion from my friend.

I believe having Peyronies Disease without palpable plaque is not uncommon at all. 

I do think that diagnosis is not that difficult.  It features rapid onset of deformity (which includes size loss under firm erection) and may additionally be found in combination with penile pain, and/or ED, that is ruled out as having other common causes. It is often associated with other fibrotic conditions.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: johnnyboy on November 30, 2006, 02:06:57 AM
Thanks for the responses.

As of now I don't have any palpable plaque, as far as I can tell, but I do have a slight deformity.  I'll try my best to explain it and maybe someone can give input.

When a penis is erect something in there fills with blood (sorry, I don't have the time to use all the proper terminology).  It feels like this "hard thing" during an erection has a indentation/rip in it that is perpendicular to the penis shaft.  It isn't painful, it isn't very noticable, it doesn't result in much loss in girth, if any.  My worry is that maybe it can rip more and spread like a circle around the cirumfrence of my penis.

Does anyone know what I'm talking about???
Title: Peyronies Disease Without Palpable Plaque
Post by: Liam on November 30, 2006, 07:48:01 AM
Hawk,

You may be right about it not being uncommon.  It is, however, not the most common presentation.  So even if there is no palpable plaque in 40% of patients with Peyronies Disease (a high number), when you factor in age, lack of other typical symptoms and the fact a doctor said "it's probably nothing", the chance of having Peyronies Disease is low.  So I think the point, although worthy of discussion, is peripheral.  We are in perfect agreement with all the core issues.

I still stand by my premise.  We have seen several guys come in lately who are in their late teens or early 20s.   They self report alcohol and/or substance abuse and excessive masturbation and/or rough sex.  Their major symptom is a perceived indentation and a fear of loss of size and function.  Upon examination their urologist reports no visible symptoms.

Guys worry about their "manhood" which we link to our ability to function sexually.   I do understand this even though I don't mean to suggest I understand the psychology behind it.  I just don't want to perpetuate the anxiety felt by these young men.

By all means, if you even think you have a problem, get it checked by a medical professional.  But, don't spend all your time afterward second guessing the diagnosis.

If the odds are in your favor, enjoy it.  If at some point your proven wrong, there is nothing lost.  There would have been nothing to do in the meantime except worry.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: johnnyboy on November 30, 2006, 06:00:41 PM
Good advice.  I guess it's just the anxiety before my next appt in a few weeks.  My worry is that I might be in the very early stages of some degenerative disease.  My doctor might overlook this and go into "wait and see" mode, letting things get worse.  Let's assume this happens, what should I do on my own?  Vit E?  Vit C?  That stuff is good for you anyway, and being a college student, I probably should take vitamins given my diet.

Any take on my previous post about perceived indentation?

Thanks
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on December 01, 2006, 01:31:09 PM
My take on it is that if, when you are fully erect that you have a dent or deformation of your penis, and if that is new, then you have Peyronie's Disease. I would do what you are doing, and be persistent with the doctor in your communicating. He may not hear what you are saying - he may hear that it "feels funny" or is shrinking, or doesn't get as hard as it used to, etc. Those are complaints that nervous guys bring to doctors all the time. My advice is to start with the important stuff - when you are erect, your penis has a dent and it deviating slightly. He may not be able to palpate a nodule or placque - so what? There is no other physiologic or anatomic way to understand this than as a manifestation of a CHANGE in the tunica albuginea. If he thinks it is not Peyronies Disease, then he has to come up with a reasonable explanation for what it is.

Tim
Title: Dents, plaques, ???
Post by: johnnyboy on December 01, 2006, 09:34:35 PM
I'm really not sure what to believe now.  I think I have identified a small bump on the tunica on the left side of my penis, close to weird it "kinks up" when i get an erection.  The erection itself is normal, but there is a slight kink as it proceeds to an erection.  How long does it take for a small plaque to form.  I began noticing problems less than 2 months ago, is that too quick for even a small plaque to develop?

As for the dent, I don't know what to think.  I guess it is a deformity, but it isnt noticable or painful, and it really doesn't feel it like it is going anywhere.

I feel like I should be taking more precautions in case this really is Peyronies Disease.  I am taking Vitamin E, but what is do you recommend to reverse or stop any deterioratoin?
Title: Precautions
Post by: Liam on December 02, 2006, 12:24:06 AM
JB,

Try ibuprophen and heat therapy (read some of the posts on this for safety precautions).
Title: ibprofen? heat therapy?
Post by: johnnyboy on December 02, 2006, 06:46:58 PM
I know ibprofen thins the blood (right?) what is the purpose of this?  Heat therapy?

Anyway, the bump doesnt seem to be present when I am erect, but I think I can feel it when I am in my smallest flaccid state.  Any thoughts?
Title: Inflamation
Post by: Liam on December 02, 2006, 07:15:03 PM
Both of these are for inflamation.  These should help regardless of the problem and are not dangerous treatments.  Of course no one is capable of treating you  over this forum.  We would not attempt to.  We do, sometimes discuss things that have worked for us.

The heat and stretching has helped me.  I take ibuprofen when I am having pain from Peyronies Disease.
Title: Re: Johnnyboy
Post by: Hawk on December 02, 2006, 08:48:36 PM
Quote from: johnnyboy on December 02, 2006, 06:46:58 PM
Anyway, the bump doesn't seem to be present when I am erect, but I think I can feel it when I am in my smallest flaccid state.  Any thoughts?

JB,

Do you want thoughts that reinforce your thoughts or do you really want to know what others are thinking?

If it is the 2nd one, then read on.

From your descriptions: Excessive drug use; obsessive masturbation; lack of diagnosis, no notable deformity, no palpable plaque, a normal erection, no pain,  I think you may well be obsessing over a condition that does not exist.  You are so obsessed with focusing on your penis that you are down to "thinking" you may feel a tiny plaque in your smallest flaccid state. 

Of course I don't know any of this, but it is what I think.  I think that you should consider stepping back.  Taking all this as a wake-up call for a healthy, balanced, life style that nurtures your psychological and physical well-being.  I don't want you to think I am insulting you or saying you are nuts.  I am saying your priorities, immaturity, and questionable standards have lead you down a path of self-abuse and at least some obsessive behavior.  Hints of this obsessive behavior seem to be present in the cause our your initial problem and in your assessment of it.

As a brother, father, or friend, I would say leave the forum.  Take a few tips with you on nutrition and proper protection of your only penis.  Concentrate on school, fitness, and quality relationships that require a loss of self and giving.  Lastly stop obsessing about this.
Title: You may be right
Post by: johnnyboy on December 02, 2006, 11:09:05 PM
Liam, thanks for the information.

Hawk, I hope you're right.

I am definitely overthinking and borderline obsessing with this issue.  I should just forget about it until I have my urologist appointment in a few weeks.  I definitely try to live a healthy lifestyle, including proper nutrition, exercise, sleep, etc.  I don't use adderall anymore or masturbate more than a few times per week.  As for drinking, I still drink about 5 times each month, not what I would call excessive for a college student, but I'm sure many will disagree (not soemthing that really needs to be debated here).

Anyway, thanks for the advice, we'll see.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: bart on December 10, 2006, 10:10:27 PM
Hi, Im new here,

I am in my 20's and used finasteride for about 4 months. Since coming off, ive had ED, low T and no libido. My penis is curving the left also and on the left side it also has a little hard nodule looking thing. Just wondering if you guys think this could be Peyronies Disease and does it usually bend to the left or right....or is it usaully up and down with Peyronies Disease? If it is Peyronies Disease is there anything I can do for it? Thanks
Title: Re: Bart
Post by: ComeBacKid on December 10, 2006, 10:58:27 PM
Welcome to the forum,

First off your symptoms sound like peyronies disease, but you should still seek the best urologist you can and get a diagnosis before moving ahead with treatments.  There is no usual with peyronies or bending to the right or left either, it can go either way, or up or down.  There are a lot of treatments you can do for it, a diagnosis is a good idea though before you move ahead.  I say try to find a urologist who deals with peyronies, because a lot from my experience know nothing about peyronies and will tell you to take vitamin E.  I actually taught my urologist some things I learned off here, and he taught me some things he knew about ED. Search local universities and public hospitals for a good urologist who deals with peyronies.  Get diagnosed, and attack your problem sooner than later.  In the meantime you can focus on eating healthy, excercising, and getting good rest, this certainly can't hurt your battle with peyronies, if indeed you do have it.  Feel free to look around and remain an active poster here, I'm sure you will be impressed with our groups diversity and knowledge on the matter.
Title: Re: Bart
Post by: Hawk on December 10, 2006, 11:00:21 PM
Bart,

Welcome to the PDS.

Only a urologist can diagnose Peyronies Disease.  Peyronies Disease can bend in any, or in multiple directions.  You do not mention how quickly this developed or how much of a measurable bend you are talking about.

Right under the main Peyronies Disease forum, you will see a "Just Diagnosed" section that offers a lot of information with out making you plow through 7000 posts.  This is so we don't have to post the same repeated advise to the 3 new members that average joining our organization every day.  Look over that section (it is not complete) and read the "Oral Treatment" on the main forum.  By then, you will have a wealth of information.  You may even want to take a few notes. 

In the mean time, feel free to jump in and ask any specifics or ask for any clarification you need.  Also keep us updated on your progress.  If you get an appointment with a urologist, we no doubt have a few tips for you.  After some reading, you will go much better informed.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: bart on December 11, 2006, 12:07:59 AM
Thanks guys, Hawk, I will read that section. Just curious if any of you guys know of a urologist in Brisbane Australia that is good with Peyronies Disease? Or do you have any contacts at all who are good, maybe they can point me in the right direction. I just dont have the time to look all over Australia as I really want to catch this thing early. Thanks. Any suggestions?

Hawk it bends slightly to the left, but its getting worse. Ive had it for about 6 months.
Title: Hard Nodule and Finasteride
Post by: Liam on December 11, 2006, 07:16:51 AM
Quoteit also has a little hard nodule looking thing
"Normally" with Peyronies Disease you don't see a nodule.  It is all on the inside.  The bend may go any way but is more common up.

Quoteive had ED, low T and no libido
Finasteride is an antiandrogen (reduces testosterone).  I assume you were taking it for hair loss (Propecia) and not for prostate (Proscar).  This would be my first concern.  Make sure you address this with your doc.  If you have reduced (low) testosterone levels, ED could follow.  Low testosterone could be fixable.  Check it out.

Liam
Title: Dexamethazone & Ultrasound?
Post by: Steve on December 11, 2006, 12:24:09 PM
I just had some therapy for my shoulder after some surgery, and after the exercises, the therapist applied a Dexamethazone cream to my shoulder and used an ultrasound device to "work it into the tissues to help break up the scar tissue."  Obviously, this started me to thinking about whether ultrasound has been used as a delivery agent for medications for Peyronies Disease?  I'm sure I'm putting the cart before the horse here as I haven't done a search for it yet (I may even get called out for posting such an 'obvious' question).  Has anyone ever heard of this before?
Title: Ultrasound
Post by: scott on December 11, 2006, 07:43:57 PM
Steve,

Use the search feature above on this forum.  There are a number of posts that seem to address your interest.  It does seem like an intriguing idea.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: bart on December 11, 2006, 08:38:30 PM
Liam, I am currently seeing a doctor about the low T issue. I am positive that is what is causing the ED. (If Peyronies Disease hasnt already done too much damage). It could be another 2 months though before I can get on TRT.
Title: Questions of an Adult Nature
Post by: IrishB OCD on December 11, 2006, 11:17:19 PM
Hey guys I had a question for the more experienced members here.  And the answer may need to come via pm, which is cool.  I am stuck with the curvature that I have now as surgery isn't even an option anymore.  So I don't know if I'll ever be able to have sex with future partners/wife.  Especially in the standard missionary position.  So I was wondering if anyone with more experience in this area would have any recomendations for other positions that would work better for someone with a (dorsal?) curvature to the left?  A fairly sever curvature I should say.  Any help would be sweet, even if you don't know any but have a place to look that would be great.  I've been searching this for months and can't find anything.

And again, pm's are more than cool since I understand that we have to keep this site accessible to everyone.

Irish
Title: Re: Irish - A workable sex position
Post by: Hawk on December 12, 2006, 12:17:49 AM
Irish,

This is not that complicated of an issue.  We all are aware that many men have a normal dorsal (upward curve) of 5- 15 degrees and that an upward curve of 25 - 30 degrees is still pretty workable for intercourse (I am estimating since I never had a curve that severe).  We also know a downward curve of even 15 degrees can be problematic enough to make a couple start getting creative (I have had that).

Conclusion: A penile curve pointing away from a woman's spine is more easily accommodated.  A penile curve or 25-30 degrees in any direction would be workable if you can position yourselves so it curves up, or away from the spine.  Now it just a matter of a little personal thought process to figure out how your bodies have to be positioned to accomplish this "curve away from the spine" position, regardless of your particular curve.  Even then there are obvious limits by degree of curve, where the curve appears on the penis, if it is a gradual curve encompassing the entire length, or an abrupt angle, whether you have hourglass deformity or buckling problems.

Tim wrote a superb article on intimacy and Peyronie's Disease on our PDS website that has one very practical illustration near the bottom of that article that is perfect for a left curve.  http://www.peyroniessociety.org/intimacy.htm  You should have searched the PDS first   ;) :D
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: IrishB OCD on December 12, 2006, 01:43:49 AM
Oh.  Ironically I've actually never been to the official PDS website before,  but I just did.  I'm gonna save that picture.  Plus the article looks good I'll have to read that.  Thanks for pointing that out to me man.  Any other ideas would be cool too.  Thanks guys.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Jack on December 12, 2006, 11:50:11 PM
Hey all.

Awhile back I injured my dick while my girlfriend and I were having rough sex, and I didn't notice any Peyronie's-like symptoms until aprx a month or more ago. I have no pain whatsoever in my dick, whether flaccid or errect, and the bend is really only noticeable when flaccid; while fully errect there is no visible bend, just a hardly discernable indent, which has no effect on which way my ERRECT dick bends. BUT, I have had these problems before after I "broke" my dick, but only now am I experiencing ED-like symptoms (after I found out about Peyronie's, really), so I'm wondering if this side effect is possibly psychological. My morning wood has even be lackluster to nonexistant since I've found out about it.

Now, my questions are: Since there is no pain, and no real visible bend while fully erect (although I feel a "hardness" under the skin when flaccid, and it seems to have a defined curve when flaccid) does this indicate that my case is either NOT Peyronie's, or if it is, then a minor case which might resolve itself? Secondly, if you think this is Peyronie's (which I'm quite sure it is, although it's possibly a milder case), is it likely to worsen, stay the same, or perhaps even clear up on its own?

I'm taking "Nature Made Vitamin E 400 I.U." twice daily, as well as a previously prescribed anti-inflammatory, just to be sure. As I've mentioned above, I can feel a "hardness" under my skin while flaccid, however, after a couple of seconds of massaging, it seems to dissapear or something --is this unusual for scar tissue related to Peyronie's?

Would it be okay to have sex/masturbate with this condition, or is it safer to just hold off on any sexually related things with the chance of it becoming worse?  I've also heard several people on the internet claim that a technique called "jelqing" can help fix Peyronies Disease over time, but I'm skeptical.  Is there any grain of truth to this?

Lastly, have you heard anything of Serrapeptase? I've been reading up on it, and apparantley it claims to be able to eat away dead tissue over time, and has alot of support in some European countries such as Germany. Would it be worth my while to give it a try?

Thanks alot for your time, this is currently destroying my life, and some answers would be comforting. (Also, I'm 19 yrs old, if that can help with your diagnosis, as I've heard cases in younger men will resolve much easier)

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on December 13, 2006, 07:32:22 AM
Jack,

Since you describe a certain amount of new hardness, and a dent while erect, it DOES sound like Peyronies Disease to me, though very "mild" as you imply.

To guess whether or not it will get better worse or stay the same would require a crystal ball, so I will defer on that to those who are in possession of such a tool. However, some of us here have hypothesized that lesions that are small and more easily attributed to an injury seem more likely to resolve on their own, compared to those of us who seem to have a propensity to develop bends or dents without any obvious injury at all. You seem to fall into the former category.

I don't think the enzyme therapy works, but others may know more than I do about it. It seems like you are doing the right thing which is educating yourself.

Finally, you raise a good point about ED. It may be psychological, but if your nocturnal erections are not so good, it may also be "real". A good experience with your partner can help you sort it out.

Tim
Title: Diagnosis
Post by: Liam on December 13, 2006, 09:18:44 AM
Jack, 

Go to a doctor.  Get a diagnosis.  This will help reduce your stress level (whether you have it or not).
You will continue to second guess whether what you feel is Peyronies Disease or not until an expert tells you.  Been there, done that!  I know guys hate to go to a doctor, especially concerning sexual matters.  It is the right thing to do.

Become knowledgeable about the subject here (the website has a wealth of valuable information).  Then you will be able to have a more informed conversation with your urologist.

Good Luck,
Liam
Title: Re: Jack ...
Post by: George999 on December 13, 2006, 01:47:27 PM
Jack,

Just to add my few cents to the excellent comments already posted:

Liam suggested:

QuoteGo to a doctor.  Get a diagnosis.  ... Become knowledgeable about the subject here (the website has a wealth of valuable information).  Then you will be able to have a more informed conversation with your urologist.

This is just totally excellent advice, hope you will act on it soon:).

Tim suggested:

QuoteI don't think the enzyme therapy works, but others may know more than I do about it. It seems like you are doing the right thing which is educating yourself.

Again, excellent advice.  Enzyme products tend to be extremely expensive, and even if they work to some degree, and I am not convinced of that yet, they probably do not work well enough to be cost effective.  And be very careful with these types of enzymes.  If you get serrapeptase or similar products in your lungs (via acid reflux or whatever) you can end up hospitalized with lung damage.  There are simply not enough warnings about the risks of this stuff.  PS-I took Neprinol for an extended period of time ... I am not taking it now ... I still have about a three months supply left ... I seems to have some good effects on general health ... I noticed little positive effect if any on the Peyronies ... I admit to not taking the huge amounts they advise ... I was concerned about safety issues, I was skeptical as to its efficacy, and I chose not to embark on a quick path to bankruptcy.  I can also tell you that the way in which many of these enzyme pushers do business is, in my mind at least, questionable.  I would be very careful.

You said:

QuoteSecondly, if you think this is Peyronie's (which I'm quite sure it is, although it's possibly a milder case), is it likely to worsen, stay the same, or perhaps even clear up on its own?

If this is Peyronies (which it does appear to be), you have several things going for you.  1) You are young.  People your age tend to recover from Peyronies much better than those of us who are older.  2) You are in the right place and you appear to be willing to learn.  That will work in your favor.  3) You are already taking Vitamin E.  I am convinced that is the one most cost effective way to at least stop this disease in its tracks.  It probably won't cure it in and of itself, but it has been known to stop its progress. and 4) You are young at a time when much progress is being made in the treatment of this disease after years of near total inattention by the research community.

QuoteI'm taking "Nature Made Vitamin E 400 I.U." twice daily, as well as a previously prescribed anti-inflammatory, just to be sure.

Sounds OK, but if I were you, I would upgrade to a good full spectrum Vitamin E product.  NOW foods makes one that is extremely affordable http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=NOW-00811 (http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=NOW-00811).  I think you will notice the difference in effectiveness.  As for anti-inflammatories, I would be very careful with NSAIDs (typical prescription anti-inflammatories) and would suggest moving to natural anti-inflammatories like fish oil, mangosteen, etc.  It would be difficult to list them all, but there are some very good ones out there, mangosteen being especially effective.  But you are on the right track.  It is absolutely essential to keep inflammation at bay.

QuoteWould it be okay to have sex/masturbate with this condition, or is it safer to just hold off on any sexually related things with the chance of it becoming worse?  I've also heard several people on the internet claim that a technique called "jelqing" can help fix Peyronies Disease over time, but I'm skeptical.  Is there any grain of truth to this?

Sexual activity in and of itself should not be a problem as long as it is NOT causing you discomfort.  Forget jelqing unless you want to inflict more damage on yourself.  Jelqing is risky even for a person without Peyronies and it is also pretty much of a useless endeavor, in spite of what the scam sites claim.  If you want a safe way to apply physical therapy to the problem, learn about the VED right here on this web site.  It has helped a number of people and, when used correctly, will be 100% safe and at least guaranteed not to worsen your condition.

Lastly, because of your age, I would encourage you to pursue a healthy lifestyle.  That covers a lot of territory.  But I can recommend that you read the info on http://www.dashdiet.org (http://www.dashdiet.org) in terms of improving your diet.  I also recommend http://www.bodybuilding.com (http://www.bodybuilding.com) which will supply you with a wealth of information on how to safely employ exercise AND diet to improve your general health.  Tobacco, alcohol, and casual sex will not get you anywhere in dealing with this disease or in anyway benefit your life in general (spiritual, psychological, physical, etc.).  So without getting too preachy, I would advise you to look at your predicament in terms of a wakeup call to reexamine your life, your goals, and where you are headed before you make the kind of ill advised decisions that cause you to end up in places you don't want to be.  I also encourage you to take charge of your life and seek out professional guidance as needed to get where you want to go.  And as Liam has suggested, a urologist would be a good first step.

I wish you the best!

- George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tamarack on December 13, 2006, 04:45:17 PM
Silly me -- I posted a question in General Comments a couple of weeks ago and only now realized I was in the wrong category. No wonder I got no response! Okay, here we go again...

What I've learned thus far is not giving me clear guidance on whether or not it is good to knead the scar tissue when Peronies is in the acute (developing) stage. What think ye?

Title: Need Not Knead
Post by: Liam on December 13, 2006, 05:00:32 PM
Trauma is thought to trigger plaque formation (or at least scar tissue).  Heat may be a reasonable treatment (if you're very careful).  :)

Liam
Title: Heat
Post by: Steve on December 13, 2006, 05:26:01 PM
I remember a discussion on the application of heat (using a heat lamp) here on the forum at least a year ago.  As I remember, it was showing 'promising' results, but I don't remember seeing any more mention of heat since then. 
Title: Re: Tamarack
Post by: Hawk on December 13, 2006, 05:43:14 PM
Tamarack,

I may be drifty but I read your question as dealing only with kneading, yet I saw the replies jump to heat application.  Maybe  a cold front just blew through somewhere.  ;D

The only thing I have to offer about kneading is don't do anything that is causes discompfort.  Also, keep in mind that just because Peyronies Disease is in its acute phase does not mean that some plaque are not stable or mature.  It only means others may be developing.
Title: BRRRRRRR
Post by: Liam on December 13, 2006, 06:13:51 PM
QuoteMaybe  a cold front just blew through somewhere.

We dropped into the low 30s last week here on the Gulf Coast.  I broke out my flannel boxers.  Thank God it is in the 70s today.

Honestly, that prompted me to bring out the heating pad I was using for heat therapy.  It seems to help.  I stopped it before due to busy schedules.
::::shaking my head::::::
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Jack on December 13, 2006, 07:35:45 PM
Thanks for all the answers I've gotten.  This site is a godsend, I don't know what I would be doing without it right now.

As for the heating:  what exactly would I use for that; also I've heard that massaging it is a good thing to do.  From my question before, is it unusual for my dick to more or less soften up completely after just a few seconds of massaging it?

Also, recentely it hasn't been as hard as I remembered it being before, could that be a sign of improvement, or is that just the natural course that this condition takes?  Before it was just shriveled up to the max and I could definately feel what felt like scar tissue in there, but more and more lately, it has been feeling alot softer, however it feels there are like cords (for lack of a better term) running the length of the inside of my dick.  Does anyone know what that might be?  Is it Peyronie's related, or am I perhaps just overthinking these things.

My noctural erections are spotty, but occasionally I will still get them so I'm hopeful that this is just all in my mind, becuase I had a similar experience awhile back, where a girlfriend dumped me and I was pretty ruined.  I didn't get any morning wood for like 3 weeks, and had trouble getting erections on cue even. 

I've heard some people describe some "nodules" or the like under the skin, or things which feel like BBs or something aprx.  Do I need to have that for it to be sure that it's Peyronies Disease?  What about a lack of pain or any real curve while erect, is the lack of these things indictive of something else, or will these come with time?

So no one has ever tried Serrapeptase with any results?  I already purchased some online, so I guess I could let you know if that has any  effect on me.  Also, with the NSAIDs, is there anything I should be concerned about with using these for the inflamation?

My dick seems very desensitized these days, almost like after you come into a warm house after having been out in freezing tempetures for awhile and your dick feels numb-like.  Also, there have been times where the head has felt cold.  Is this cause for concern, and will the sensitivity come back in time?

I'd really appreciate it if there is any other advice you guys could give me on how to help this problem.
Thanks for your time.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Jack on December 13, 2006, 08:13:52 PM
Another question:  Could my case possibly be damaged soft tissue which would just resolve on its own without forming scar tissue?  Or is the hardness scar tissue that has already formed and I'm already screwed?

One more:  Would taking my prescribed adderal have any adverse effects on my recovery process/chances?
Title: Rerun
Post by: Liam on December 13, 2006, 08:24:03 PM
Jack,

Here is a post I made earlier.  It is, at least, a possibility.  Especially considering your age.  Another possibility would be phlebitis (similar to this only with blood vessels)  Check it out and let a doc check "it" out  ;).

QuoteGeneral Category / Peyronie's Disease Discussion Forum / NetDoctor.co.uk  on: December 02, 2006, 08:37:21 AM 
Here is a quote from http://www.netdoctor.co.uk/ate/menshealth/205680.html offering an alternative diagnosis :



Quote
My husband has a prominent vein on his penis






Question

My husband recently discovered what appears to be a hardened vein on the side of his penis. The vein itself is only about 1- to 2 inches long and is not painful. It feels hard to the touch even when his penis is flaccid, and is more prominent when his penis is erect.

His GP has told him there is nothing wrong, but we are puzzled as to why this has appeared almost overnight. Also, is there anything that can be done or will the vein gradually reduce in prominence over time?

Answer

I think it is very likely that your husband has something completely benign known as lymphangiosclerosis. This is a hardened lymph vessel rather than a vein, although it is similar in shape and appearance except that it tends to be less blue in colour. It feels hard to the touch even when the penis is flaccid and will be more prominent during an erection.

This is not an uncommon symptom and it tends to happen following more regular or vigorous sexual intercourse in younger men.

Provided your husband is functioning normally in every other respect, there is no need for him to worry unduly about this linear hardening. It will almost certainly resolve spontaneously by itself over the next few days or weeks.

In the meantime gentle well-lubricated lovemaking is to be recommended.

If there are any other changes that you have noticed or if things change in any way, I'd go back to your GP or local genitourinary medicine (GUM) clinic for further advice.

Yours sincerely

The Medical Team

Title: Re: Jack
Post by: George999 on December 13, 2006, 11:21:49 PM
Jack,

It is imperative that you get seen by a urologist who has the expertise to sort all of this out.  Simply tell your personal physician that you want a consultation with a urologist for your problem.  The problem with NSAIDs is that they can have nasty side effects including causing cardio-vascular and renal damage.  Just what the risks are for your particular NSAID are specific to that NSAID.  My point is that you should NOT be taking a NSAID (even and over the counter one) for an extended period without your doctor's knowledge and consent AND whatever NSAID you are taking might not be doing your Peyronies any good either.  Doctors typically do not prescribe NSAIDs for Peyronies which tells me that you should use caution in this area.  However, I do think you should be using some natural anti-inflammatories such as I suggested which will not have the potential nasty side effects that the NSAIDs have.

Also.  Take a close look at the side effects of adderal.  One of them is sexual dysfunction ie impotence.  If you are having these sorts of problems, they may actually be related at least in part to the adderal.  Here again, you NEED to talk to your doctor about this issue.  Don't be embarrassed, they've heard everything, and they are usually very understanding regarding these issues and may be able to help.  But while you can get a great education by reading our posts and other info on this site, ONLY your personal physician and urologists can sort out the details of your particular situation and get you going in the right direction.

Also, if you are taking prescription meds, you need to be careful what supplements you take.  Some of them can react in VERY BAD ways with prescription meds.  So if you have ANY doubts, ask your doctor or pharmacist before you start taking anything new.  And if you experience anything abnormal going on, STOP any supplement that you may have recently started and get expert help from a medical professional.

- George
Title: Re: Jack
Post by: Jack on December 14, 2006, 12:47:54 AM
Quote from: George999 on December 13, 2006, 11:21:49 PM
Jack,

It is imperative that you get seen by a urologist who has the expertise to sort all of this out.  Simply tell your personal physician that you want a consultation with a urologist for your problem.  The problem with NSAIDs is that they can have nasty side effects including causing cardio-vascular and renal damage.  Just what the risks are for your particular NSAID are specific to that NSAID.  My point is that you should NOT be taking a NSAID (even and over the counter one) for an extended period without your doctor's knowledge and consent AND whatever NSAID you are taking might not be doing your Peyronies any good either.  Doctors typically do not prescribe NSAIDs for Peyronies which tells me that you should use caution in this area.  However, I do think you should be using some natural anti-inflammatories such as I suggested which will not have the potential nasty side effects that the NSAIDs have.

Also.  Take a close look at the side effects of adderal.  One of them is sexual dysfunction ie impotence.  If you are having these sorts of problems, they may actually be related at least in part to the adderal.  Here again, you NEED to talk to your doctor about this issue.  Don't be embarrassed, they've heard everything, and they are usually very understanding regarding these issues and may be able to help.  But while you can get a great education by reading our posts and other info on this site, ONLY your personal physician and urologists can sort out the details of your particular situation and get you going in the right direction.

Also, if you are taking prescription meds, you need to be careful what supplements you take.  Some of them can react in VERY BAD ways with prescription meds.  So if you have ANY doubts, ask your doctor or pharmacist before you start taking anything new.  And if you experience anything abnormal going on, STOP any supplement that you may have recently started and get expert help from a medical professional.

- George

Thanks for the advice George (and everyone else who responded to me), all of this information I'm getting from everyone here is invaluable.

I would undoubtedly go to a doctor if I could, but unfortuantely I can't.  I have no insurance, and I won't for 4-5 months.  If I even go in for a consultation, it'll cost me a weeks paycheck, and I have costs that need covering.  So while I appreciate your advice, and I know that you're right, I'm stuck between a rock and a hard place here.  For the time being, I'm just going to have to utilize whatever information I can scrounge up on this site and from you other users; as well as taking the over the counter medications that are recommended.

On a lighter note, as I said in an earlier post my dick in its flaccid state seems to be much softer and less shriveled up than it had seemed before, so maybe this is a good sign?  Maybe the vitamin E and the anti-inflammatories are already helping me improve, considering I started taking them in the earliest stage?  I hope to god I don't need to go see a doctor for this, becuase quite frankly, I can't afford it.

The way I'm looking at it though is this:  Do I really need to go to a Urologist and pay out the ass for him to talk in vauge generalizations about what it could be, and then tell me to take 400 mg of vit E twice daily and come back in 6 months if I have no improvements?  That has been my usual experience with specialists, and I have no doubt that it would be the same now; and I have neither the time nor the means to travel to another state to get a consultation that I can't afford to begin with.

The way I see it is I'm going to get just as much, if not more knowledge and insight from this forum than I would from a doctor.
So any and all advice is appreciated and welcomed.
Title: Odds
Post by: Liam on December 14, 2006, 06:51:02 AM
The odds (and I hate playing them with health) are you don't have Peyronies Disease (based on age and your description of symptoms).  But, you may.  It's a gamble.  At your age, I was in a similar situation with insurance.  I understand.  If you are in college, they may have a clinic that is "free" for students.

Just be gentle with "the lad" for a few weeks.  If you are already seeing improvement, thats a good sign that it is not Peyronies Disease. 

Good Luck!

Liam
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on December 14, 2006, 07:25:33 AM
Jack,

Going to the doctor ain't the be-all and end-all of self care. You are taking some important steps to help yourself, and that is good. But it would behoove you to be SURE that in that "4-5 months" that you actually GET health insurance and then go to see a doctor.

NSAIDs may play an important role in helping control Peyronies Disease - they just have not been tested really at all. I took a LOT of advil for quite a few years because of headaches until I realized (Duh!) that they were mostly due to the caffeine I was ingesting. When I stopped - and I also strongly thought that caffeine might be making my Peyronies Disease a bit worse - my Peyronies Disease started to really get worse. In retrospect, I wonder if that was because of my great reduction in NSAID usage. I don't think that the caffeine was protective... but see, this is the problem with each of us trying to figure this disease out.

You are doing some good things. I would agree with George that moving to a full spectrum vitamin E product makes sense. I would tend to agree with George because his Peyronies Disease is getting better. I would also pay attention (and I do) to "Old Man", who has had Peyronies Disease for many years, and has successfully held it at bay with the VED. Avoiding trauma makes sense too. You can talk to your partner about the need for gentle intercourse only - and then stick to that plan. We call that Henny Youngman ("king of the one-liner") medicine (his old corny joke is "I went to the doctor and said, 'Doc - it hurts when I lift my arm' and the doc says "Then don't do that.'").

Tim
Title: Re: Jack ...
Post by: George999 on December 14, 2006, 03:27:42 PM
Jack,

Just for what its worth, when it comes to NSAIDs, I suggest you listen to Tim's advice.  He has experience with them in relation to Peyronies that I don't and he is a doctor by profession, so he is aware of the risks.  Since I am not a doctor, I choose to error on the side of caution.  And I would also suggest that since you can't afford to see a doctor at this point, that you not forget that pharmacists can be a great resource and if you are already buying your meds from one, they generally are a great source of advice when it comes to meds and supplements.

- George
Title: Pharmacist
Post by: Liam on December 14, 2006, 05:43:04 PM
I'll second that.  I am as loyal to my pharmacist as I am to some of my doctors. 
Title: Re: Odds
Post by: Jack on December 15, 2006, 09:07:07 PM
Quote from: Liam on December 14, 2006, 06:51:02 AM
The odds (and I hate playing them with health) are you don't have Peyronies Disease (based on age and your description of symptoms).  But, you may.  It's a gamble.  At your age, I was in a similar situation with insurance.  I understand.  If you are in college, they may have a clinic that is "free" for students.

Just be gentle with "the lad" for a few weeks.  If you are already seeing improvement, thats a good sign that it is not Peyronies Disease. 

Good Luck!

Liam


Would a "softening up" be considered improvement?

Something is definately not right, that is for sure.  And my dick will usually awkwardly bend to the right when flaccid.  Its obvious too, not just as if it was hanging to one side, but looks obviously distorted to one side. 

I hope you're right though...
Title: Peyronies Disease in Under 40 - Research Article 2002
Post by: Liam on December 15, 2006, 11:08:34 PM
Jack,

If mine softened up, I would be screaming it from the........ well..... the computer  :).  Hardening is what causes the bend and other nasty things.

I don't mean to imply that nothing is/was wrong, only that there are several things that can affect the "angle of the dangle" that are not Peyronies Disease and will be with you for a much shorter period.

Research the incidence of Peyronies Disease as relates to age.  That should make you feel better.

Here is an interesting study from 2002 relating to Peyronies Disease in younger men.  This study found a prevalence of Peyronies Disease in men younger than 40 of 4.8% (30 out of 626).  This was significantly higher than other published studies (but is still a low incidence).  Here is the link.

http://www.andrologyjournal.org/cgi/content/full/24/1/27
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Jack on December 30, 2006, 11:52:42 PM
How long do you think I would need to wait to see whether or not it heals?  Could it possibly be just soft tissue damage?  Would that heal on its own?   Also, at times the penis feels kind of cold, what might that be?  Poor circulation?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Jack on December 31, 2006, 12:36:11 AM
Maybe I should clarify what I mean by it "softening up" a bit.  Before it just felt like a hard mass of shrivled up penis.  But lots of times now, it'll feel like a few fat, hard "cords" for lack of a better word running the length of my dick, with a bunch of soft flesh wrapped around it.  Seems a bit easier to bend it around and everything.  Anyone else have something similar? 
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Jack on December 31, 2006, 12:39:49 AM
I've got another question: what are these "nodules" I keep reading about?  Is that a requirement to be considered Peyronies?  Also, I don't have any pain; is that uncommon?

Also, there is no bend to speak of while erect, although there is a substantial curve and hardening while flaccid, as well as difficulting acheiveing and maintaing erections (which in itself could be all in my head).
Title: Pain
Post by: Steve on December 31, 2006, 11:09:56 AM
Jack,

For what it's worth, I've never had any pain (other than the initial pain when I got my injury) with my Peyronies Disease, and I'm almost at the 2 year mark.  I too have a 'chord' running the length along the top, and I'm sure that it is what causes my bend while erect.  My only 'nodules' are at the site of the injections where my Uro put the Verapamil.  Prior to the shots, I don't remember any lumps being present.

It sounds to me (definately a layman...not a doctor) that your chords are inelastic in the relaxed state, causing a bend when flaccid, not erect.  To my mind, this would be better than bending while erect (which I think most of us have) which causes difficulties in the desired activity (if you get my drift).

Anyway, good luck with yours...I'm still looking for the 'magic bullet'.

Steve
Title: Re: Hello - And a few questions
Post by: Bassman04 on January 01, 2007, 09:06:45 AM
Hi
I've just found this site
I've had my disease for what must be about 6 years and i think it was caused by a vigorous grinding session from my ex girlfriend...its the only thing i can think of...I must have damage/scarring on the top and bottom of my penis as the curve isn't massivly bad even though i must have lost about 1 inch to 1 and a 1/2 inches in total!  I was perfectly happy with me old boy it was about 6 1/2 inches its now about 5" :(  i dont seem to have erection problems as such but when i do get them they are still painfull and i dont feel what i would call solid....i  have tried natto vit e and even vitalzym..but the vitalzym gave me side effects of a very serious intesinal stretching feeling.  want to get back into trying some self healing ideas and the hyperthemia one sounds interesting..so i need a infrared lamp 250W and need to be 12-16 inches away and it needs to be done for about 30 mins...is this correct?  Also the vit E i take is unique E..is there a better one to take....should i be taking other supplements as well....Thanks for any help anyone can give.....i'm from the UK
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: floweredup on January 02, 2007, 11:37:55 AM
what can i expect during my initial consultation with a urologist? i am fairly anxious about this,despite having lived with this for 10 yrs i had never sought medical advice,apart from an initial flurry of doctors visits 10 yrs ago,which brought me no further forward,my recent visit to my gp resulted in an appointment with a urologist but my medical practitioner has limited experience of the syndrome and relied on my descriptions,i did not expect him to recommend any particular treatment and i did not ask him about it,i myself presumed surgery the only option(which frankly is scary)and it is only thru this site that i realise there is a wide and varied range of treatments,i will return to my gp this week for further info,i had always put off treatment,and just learned to live with it as i was truly utterly ignorant and ill informed about the treatment,i knew nothing of placque deposits etc,or vitamin e,apart from the obvious curvature(i hate the stigmatising term deformity) i have an indentation halfway down the shaft at the point of the bend,i would estimate the bend to be about 15-20 degrees,there is no hinging effect, in a flaccid state there is no noticeable effect,i have lost consistency and duration of erection(overcome by ed drugs at 25mg dose) i knew nothing of veds etc,and having been in the dark for so long the urology appointment feels like a big step  into the unknown,i would be most grateful to hear of anyones experiences with initial consultation,i am confident of the cause and diagnosis,but not so confident of the specialists! ie i`m terrified of needles,but if injections bring improvement i`m willing to try,what sort of procedures am i likely to undergo during my initial consultations?
Title: Floweredup's trip to the doctor
Post by: Tim468 on January 02, 2007, 04:01:49 PM
It is hard for me to give advice. I would recommend the follwoing though:

Try hard to be relaxed and open, and go with curiosity. Think before you go about what you want to come of the visit. Most might come up with a list that included: general information and education about the Peyronies Disease; a list of a range of offered treatments and their expected outcomes (here it is useful to be forearmed with information so you acn converse about it); direct questions about what percent of his practice is devoted to this problem - does he do it all the time, or just now and then; does he do any research or participate in any clinical trials; how many surgeries (if he is offering that) has he done? (20? 200? 2,000? - get a ballpark estimate).

Ask him if he will want to study blood flow with a doppler ultrasound, or assess the shape of the curve when erect with medications? Ask if there is any blood work he might recommend. A person offering to do more tests is not necessarily a better doctor.

Above all, I think a "good doctor" should take time to listen; be emotionally available and present in the moment, and willing to be patient with your nervousness (or even help to defuse that in you) and should MAKE SENSE. Above all else he or she should MAKE SENSE. What they might propose to do should be sensible - and if it doesn't make sense to YOU, then they should be able to fix that (but won't if you don't tell them you're confused!!!). I think that if a medical plan does not make sense physiologically, then they might not have thought it out very well.

I would hope that a good preliminary offering would include discussing supplements and the Pentox therapies. Good luck.

Tim
Title: Re: floweredup
Post by: George999 on January 02, 2007, 04:45:09 PM
A big Amen to Tim's advice.  I would add to that that it might be a good idea to gather up some key Pentox research done by Lue and (Tim, who is that doctor in LA?  I keep forgetting his name, but his papers are so informative and helpful.) and take that along with you on your visit so that you can get an idea of how receptive he is to such information.  If the fact you are somewhat knowlegable about the subject seems threatening to him, you probably should move on and find a doctor who has the self confidence to deal with people who have a clue about medical issues.  Some doctors can't handle these factors well, so observe carefully.  Personally, I have found that the better urologists tend to be the younger ones (sorry Tim) and the ones in the major medical centers OR who are accustomed to working with docs in the major medical centers.  Of course there are exceptions, but these are the guys that have really helped me most with my nearly 50 year history of urological problems.

- George
Title: Re: Pain
Post by: Jack on January 02, 2007, 06:03:57 PM
Quote from: Steve on December 31, 2006, 11:09:56 AM
Jack,

For what it's worth, I've never had any pain (other than the initial pain when I got my injury) with my Peyronies Disease, and I'm almost at the 2 year mark.  I too have a 'chord' running the length along the top, and I'm sure that it is what causes my bend while erect.  My only 'nodules' are at the site of the injections where my Uro put the Verapamil.  Prior to the shots, I don't remember any lumps being present.

It sounds to me (definately a layman...not a doctor) that your chords are inelastic in the relaxed state, causing a bend when flaccid, not erect.  To my mind, this would be better than bending while erect (which I think most of us have) which causes difficulties in the desired activity (if you get my drift).

Anyway, good luck with yours...I'm still looking for the 'magic bullet'.

Steve


Well this has got me thinking.... If I don't have a defined spot where there is plaque, but these "chords" or what-have-you, does that mean that I would lose massive length and girth if the plaque were to dissapear?  The majority of the cases I've studied had an obvious problem area of plaque, usually in a specific area; but if I have no bend while erect, and these rubbery, thick, tube-like things running the length of my dick, does that mean that is all plaque?  Does it mean that perhaps it is something other than Peyronies Disease?

Also a lack of morning wood still... Is this really bad?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: floweredup on January 02, 2007, 06:32:00 PM
cheers tim and george,alls experience is valuable,my gp seems pretty receptive and i shall tell him of this site,i have this vision of docs and urologists thinking "oh god,not another bloody patient with the internet"!,i think one of the probs in scotland is that the scots male more so than most males are not very "emotionally tuned" the scots male solution to lifes trials usually consists of getting blind drunk and picking a fight with someone! as for pain initially it was fairly excruciating ,tho this is not the case now,the bend has remained unaltered,and i`ve always thought the lack of pain to be a sign the condition has stabilised,for the first 2 yrs approx intercourse was a nightmare,which is why i`ve always been cautious with viagra type drugs, i find cialis rather strong and fairly unpredictable,with regards spontaneeous erections at untimely junctures,whilst i have no pain anymore,i can occasionally feel a vague tenderness sensation at the site of damage,which feels like a sort of small indentation,i presume this is scar tissue,another odd sensation is an occasional feeling of extreme coldness in my penis,but i`ve never been sure if this is the result of my penis being an extremity as it were,which hangs outside my body,i`ve never been sure if this is a symptom,or a result of my fixating on the problem for 10 yrs! as for the aesthetic appearance of the curve,i find that whilst on viagra,an extra strong condom,sort of acts like a splint,could anyone illuminate me as to the efficacy of ved`s?
Title: Welcome floweredup
Post by: Angus on January 03, 2007, 12:20:41 AM
Welcome to the board, floweredup. You ask about efficacy of the VED... there is a profound amount of VED discussion on the VED and Other Mechanical Devices thread. There is also a Highlights of VED and Other Mechanical Devices topic in the Newly Diagnosed Highlights area. These highlight posts provide compilations of posts from each thread that is a great way to get up to speed on the many topics here. You might start with reading the Highlights VED topic, then read through the main VED and Mechanical Devices thread that is many pages long. This, along with the other threads will help you gather your thoughts on developing a treatment program to your liking if you wish to do so. If you have questions about anything you read here or otherwise, ask away! You've found quite a resource here for Peyronies Disease information and help...  Angus
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: floweredup on January 03, 2007, 09:01:32 AM
on the subject of veds i initially didnt understand what they were,i now realise,the only place i had seen these was in dodgy adverts in porn mags when a young teen! i didn`t realise they had a practical application.anecdotally,i recall a fellow on the periphery of my social circle some years ago,a real macho man,ex army,highly trained martial artist,tall muscular,with an air of invulnerability,he ran a small security firm which hired out ex army folk to work as doormen in problem pubs n clubs,some folk i know were at his flat one evening,where in the living room they saw one of these devices,the guy became uncharacteristically embarassed,and ushered the device away,he was of course in line for some gentle leg pulling by his pals(tho not to his face!) it is only now i wonder if the guy was a silent sufferer of peyronies,as i say he was a proper scottish hardman,highly unlikely to admit any emotional or physical vulnerability,and not likely to be open about such matters
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: floweredup on January 03, 2007, 01:37:47 PM
has anyone here had experience of surgery? if so how effective was it? it`s an option i would consider,pro`s of surgery in my city of glasgow,are that our surgeons have a global renown for their excellence,tho this mainly derives from glasgows reputation for knife crimes,stabbings slashings etc(glasgow has a shocking incidence of this sort of thing) i know that medics serving oin the frontline of iraq are trained in glasgow for battlefield surgery techniques,so if i was asked to consider surgery i would feel fairly confident in the hands of the3 surgeons,cons of surgery in the uk in general concern a "superbug" called mrsa,which is rife in our hospitals,we have the nhs(national health service) which is underfunded and has been run into the ground by britains greedy corrupt politicians,rarely a day goes by without a new case of mrsa infection,and i wouldn`t like to catch it downstairs!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: finartmike on January 03, 2007, 01:39:24 PM
Hello All,
I have just been diagnosed with Peyronies (well I diagnosed myself from the internet and the doctor confirmed it).  I am just 50, in reasonable health - good blood pressure, no medication apart from anti depressants.  In the past I have hit the woman's pelvic bone with my erection  [apart from pain, no visible trauma] -but noticed no bend till 4 months ago - a short while after a very painfull penetration, where my lady said it felt as if my penis was bent double.  Over the past few years my general erection was becoming less hard.  Perhaps this made my erection more susceptible to injury.  I first noticed a pea sized lump in the shaft, then the crooked shape of my erection.

I have read a lot of your posts today and I am both impressed by the depth of knowledge but now seriously depressed at the prognosis.

I have poor urine flow which was previously attributed to a benign enlarged prostate:  which is now diagnosed as firm but not enlarged.  Yesterday, Flomax has been prescribed for that which lowers blood pressure I believe.

There will be no more sex with my lady as our relationship has been intermittant and we have again fallen out over the possible cause of this perplexing condition [she is convinced it is masturbation and over use which is my fault].  I am virtually in tears.

I am from England and I see this is a U.S. forum - My urologist consultant saw me yesterday and has not specifically prescribed anything to combat the scar tissue he confirms is present in the shaft of my penis, but he has prescribed viagra to enhance my erection.  He rules out surgery at this stage till the 4 month trial with viagra and flomax, as surgery would shorten my penis by 1 cm.  As my penis is already borderline small I would not approve of surgery.  As I have had no sympathy from my intermittant lady friend, I do not expect to be able to trial viagra as I will not be able to have sex.

What do the forum members say of the product 'Neprinol' which is supposed to disolve the scar tissue by the enzyme action of Nattokinase, Serrapeptase and CoEnzyme Q10?

I cannot really say how long I have had peyronies disease, save to say I discovered it 4-6 months ago.  It may have been creeping up on me for some time.  Also, my flat is underneath powerful radio and microwave transmitters such that I can feel the electromanetic field through my body.

I am so very upset.  Is there anything I can do?
Title: Re: Chords
Post by: George999 on January 03, 2007, 01:41:47 PM
QuoteThe majority of the cases I've studied had an obvious problem area of plaque, usually in a specific area; but if I have no bend while erect, and these rubbery, thick, tube-like things running the length of my dick, does that mean that is all plaque?

My, admittedly non expert, opinion is that indeed it is all plaque.  I have had these things running in every direction.  Laterally, diagonally, around the circumference, randomly, you name it.  And I have experienced having them disappear.  The common wisdom seems to be that plaques form as blotches or tumor like balls, but I have seen them take all kinds of weird forms over the course of my struggle with this issue.  I currently have a very small plaque in the septum that has caused an inordinate amount of deformity (it has shrunk to practically nothing now with almost no deformity left) connected by a 1/2" long chord to another plaque that is much larger and more typical in form on the side of my penis that produces literally no deformity at all.  Go figure!  Right now my most obvious deformity is a shallow diagonal 'crease' along the line where the chord runs between the two plaques.  So there you are.  In my opinion its all plaque and it all can be successfully dissolved away with a lot of time and patience.

Wishing you the best this New Year!

George
Title: hello,finartmike
Post by: floweredup on January 03, 2007, 01:58:54 PM
hello,finart mike, i live in scotland uk and am awaiting a urology consultation,i`m 30,and have had this for 10 yrs,and have been thru what you are experiencing(see my earlier posts,i`ve just joined too) as for what you can do,by joining this forum and having sought help,youve done the best thing you can do,it is by no means the end of your life as a man,and i think the psychological aspect of it is worse than the physical,with time and treatment and new perspectives i reckon i can guarantee you will gradually come to terms with it all and start feeling better about yourself,in the early stages of my peyronies,which also ruined a relationship,everything was all too subjective,gradually this will change,you`ve already made massive inroads
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: finartmike on January 03, 2007, 02:01:05 PM
Thank you for your kind sentiments flowerdup
Title: Re: finartmike
Post by: George999 on January 03, 2007, 02:31:46 PM
Quote from: finartmike on January 03, 2007, 01:39:24 PM
I have poor urine flow which was previously attributed to a benign enlarged prostate:  which is now diagnosed as firm but not enlarged.  Yesterday, Flomax has been prescribed for that which lowers blood pressure I believe.

Flomax is a class of drug known as an 'Alpha Blocker'.  You can read up on Alpha Blockers on the Wikipedia website.  As far as I know, Alpha Blockers provide no known benefit in terms of Peyronies.  They are first line for Prostate issues though.  If the Flowmax does not work for your prostate problem, I would suggest you request to be checked out by your urologist.  Alpha Blockers can have some blood pressure lowering effects.

Quote from: finartmike on January 03, 2007, 01:39:24 PM
There will be no more sex with my lady as our relationship has been intermittent and we have again fallen out over the possible cause of this perplexing condition [she is convinced it is masturbation and over use which is my fault].  I am virtually in tears.

Nonsense.  Masturbation does not cause Peyronies.  Even injury to the penis does not always cause Peyronies.  Peyronies is caused by a situation where the normal healing process does not work properly.  Men can end up with Peyronies from extremely minor trauma if they happen to be biologically susceptible to it at the time of the trauma.

Quote from: finartmike on January 03, 2007, 01:39:24 PM
I am from England and I see this is a U.S. forum - My urologist consultant saw me yesterday and has not specifically prescribed anything to combat the scar tissue he confirms is present in the shaft of my penis, but he has prescribed viagra to enhance my erection.  He rules out surgery at this stage till the 4 month trial with viagra and flomax, as surgery would shorten my penis by 1 cm.  As my penis is already borderline small I would not approve of surgery.  As I have had no sympathy from my intermittant lady friend, I do not expect to be able to trial viagra as I will not be able to have sex.

Viagra alone is not likely to solve your Peyronies issues.  The best thing you can do for yourself at this point in my opinion (and I am NOT a doctor) would be to get yourself on 800IU per day of a "broad spectrum" type of Vitamin E.  Read the supplements thread on this forum, there are numerous references as well as links to sources.  You will also find a wide ranging discussion as to various supplements guys have found to work and others that are fairly useless.  There is also a very promising drug treatment being pursued by some forum members.  It involves a combination of Trental, Viagra and Arginine, sometimes referred to as the 'PAV' cocktail.  There are references to research backing up the effectiveness of this regimin.  I suggest you carefully print out some of these studies and submit them to your doctor.  He is now prescribing Viagra for you.  Fortunately, in terms of cost this is the biggest hurdle.  Trental is now available as a generic Pentox and is very affordable and Arginine also is not hugely expensive, though it would probably cost you out of pocket since it is a supplement not generally covered by insurance.  I would also recommend Vitamin E along with this whole approach, since Vitamin E has been shown in studies to work synergistically with Pentox.

Quote from: finartmike on January 03, 2007, 01:39:24 PM
What do the forum members say of the product 'Neprinol' which is supposed to disolve the scar tissue by the enzyme action of Nattokinase, Serrapeptase and CoEnzyme Q10?

While Neprinol MIGHT have some beneficial effects, I would save my money for things that are known to be effective.  Neprinol, along with some other highly promoted products, is extremely expensive and its effectiveness is dubious.  I have seen all kinds of 'references' to 'research' involving Neprinol, none of which has ever lead to anything convincing as far as I am concerned.  I currently have a $130 bottle of Neprinol collecting dust because I have found other things that are more effective.  I probably will take them eventually, but it will be unlikely that I will be buying any more of the stuff.

Quote from: finartmike on January 03, 2007, 01:39:24 PM
Also, my flat is underneath powerful radio and microwave transmitters such that I can feel the electromanetic field through my body.

Who knows what the effect of radio frequency radiation is?  On the other hand stray microwave radiation is a known health risk. You might want to have it measured in terms any stray amount of radiation that might be leaking into your flat.  This is not a big thing.  I think they even sell the instruments fairly cheaply, they use them to check Microwave ovens for leakage.

Quote from: finartmike on January 03, 2007, 01:39:24 PM
I am so very upset.  Is there anything I can do?

The best thing you can do for yourself is to try to take charge of your situation.  Read, read, read.  There is so much information on this site and this is becoming a truly international site as many from various parts of the UK are beginning to post and a few from other areas as well.  So welcome!  The more guys we have from the UK participating here, the more we can accomplish there as well in terms of making contacts with docs who are helpful and up to date.

- George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: finartmike on January 03, 2007, 02:54:46 PM
Very many thanks, George.  I have written down the ingredients of the PAV cocktail and I shall research the same - kind & grateful regards
mike
Title: Re: Flomax
Post by: csup on January 03, 2007, 04:26:31 PM
fineartmike,
George's responce to your recent post was right on as usual. He offers all here a wealth of knowledge and information. I will add my 2 cents worth on the Flomax as I am on Uroxatral which is similar.  It is indeed an Alpha Blocker that is directed at the receptors in the urethra around the area exiting the bladder surrounded by the prostrate. Very simply Flomax or other medications of this type relax and help smooth the wall of the urethra allowing a stronger flow. It does not have any affect that I can tell on helping against Peyronies Disease. The PAV cocktail on the other hand does seem to be working for me, along w/ vit E and other supplements discussed on this forum. I have recently noticed a small change in the shape and size of my plaque. It seems to be slightly smaller than before. As George advised, research the info, make copies and get back in to your Uro to get on this regimen. crs
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: finartmike on January 03, 2007, 05:05:12 PM
Thank you csup.  I shall retire for the night now here in england!  I shall log on again when you greet another New Years day. Have a happy one, all, and especial thanks for this forum.
Mike
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: couldbeworse on January 03, 2007, 07:16:20 PM
I take Uroxatral, and it helps me with Peyronies pain.  Often I feel a general pelvic tightness and this causes discomfort focused in the area of my plaque.  The alpha blocker loosens everything down there, helping me relax, alleviating the pain.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Bassman04 on January 04, 2007, 10:48:28 AM
hey finartmike

I'm from the UK too...Essex to be exact.   Have only just found this website myself and will get meself involved in some coctails of some sorts.   Good luck with your treatment mate

Tom
Title: question regarding dosage
Post by: Bassman04 on January 04, 2007, 11:04:31 AM
So i was thinkinga about buying some arginine...does anyone know what would be an ideal dosage?  also i have some unique E Vit E  i take 400 mg a day is this enough?....Shold i try this trental even though i don't have any urinary probs...thanks for any help guys :-[
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: George999 on January 04, 2007, 11:57:19 AM
Bassman, Alpha Blockers (FlowMax, Uroxatral, etc.) are for urinary (prostate) problems, Pentox (Trental) is primarily used for fibrosis (Peyronies) along with Arginine and a PDE blocker like Viagra and sometimes an anti-oxidant like Vitamin E.  Try not to confuse the two.

Couldbeworse, It is interesting that Uroxatral is helping with the Peyronies pain.  Perhaps it is increasing circulation in the area and helping that way.  If it seems to be working great, but I have seen no research confirming it to be effective, but then each person reacts differently to different substances.

- George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Bassman04 on January 05, 2007, 12:07:39 PM
thanks George 999....looks like i'll get some pentox and arginine then.....what's everyone on dosage wise ?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: csup on January 05, 2007, 02:27:08 PM
Bassman,
I don't know how it is in the UK, but pentox is only available by prescription in the US. As it is originally specified for use with intermittent claudication, and more recently has been used for fibrosis, but not Peyronies Disease, you might have trouble unless you have a DR. willing to work w/ you. Part of my regimen is as follows:

pentox - 400mg ea. 3 x daily (after meals) (this is standard prescribed dose for claudication)
full spectrum vit. E - 400IU ea. 3 x daily (after meals)
arginine - 1000mg ea. timed release 2 x daily (morning and nite)
viagra - 25mg taken at bedtime

I take other supplements, but the above seem to be the heavyweights  for controlling Peyronies Disease. crs
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Bassman04 on January 05, 2007, 03:20:23 PM
csup cheers for the reply mate

looks like i'll have to get in touch with me Doc,  i have no faith in the NHS over here though..oh well fingers crossed hey.

i'll get the arg and vit e though..something is better than nothing.

once again thanks csup...really appreciate it....dont normally talk about me prob as only a few people know, and it actually mentally unloads me abit......can get really down sometimes, i spose you know the feeling ;)
Title: FIRST POST - HELP
Post by: SUERTE on January 25, 2007, 11:26:15 AM
Hello Everyone-

This is my first post.  Over the last couple of months I have noticed (TWICE) that my penis, while on its way to erection, had a drastic bend to the right.  Almost like if someone chopped it at the middle. This only has occurred twice and only after back-to-back sex.  I can quickly straighten it out while the bend is occurring.  It happened the last time a couple of weeks ago.  I didn't think anything of it, straightened it out and continued.  Later that day, after hours of exercise, I did some research.  While in the flaccid stage (which regularly looks smaller after physical exhaustion), I tugged on my penis to see if in fact when it would become erect, if it would curve.  Needless to say, I was not in the "mood" and an erection was not obtained.  Shortly after that, my penis shriveled up, smaller than ever, and became pretty hard while in the flaccid stage...pointing counterclockwise.  I had difficulty peeing; however, no pain.  My penis came back to its original size later that night...with the help of some heat applications.  I was able to gain an erection the following night with no pain, or curve.  Looked a bit larger in the shaft of the penis as I was progressing towards a full erection.  Once a full erection was obtained, there was no pain and only a very slight curve to the right.

I took levaquin for potential infection and began Vitamin E (1000 IU) per my urologist.  He mentioned to me, after feeling it, that I might be in the early stages of Peyronies Disease, but that I would be "alright."  That was just over one week ago.

Since then, I have had no pain, no noticeable plaque or extreme hardness in the penis.  My erect penis is fine...with just a little curvature to the right.  I have had sex twice and masturbated 3X.  I personally believe that I might have caused/aggravated some trauma in my penis that led to this acute development of Peyronies Disease like Symptoms.

However, I believe that in the flaccid stage, my penis has become somewhat "torqued".  Or, a more dramatic level of penile torsion?  Perhaps it has been there forever, and I haven't noticed? Also, it feels that while in the soft stages it is pointing counterclockwise. I do know that I have had some level of torsion in the past.  My penis hooks counter clockwise about 30 degress when in the longer flaccid stage.; which is apparently normal.  It hooks that way in transit to erection; however, once erect it is close to straight.  Almost looks banana like on its way to becoming fully erect.  Dont feel or see any plaque.  Although, the shaft of the penis does look more pale than the rest of it whil in the sof stages. Also, while flaccidit looks like it has three or four wrinkle rings on the middle of the penis.  Those go away as i become larger.

Tonsof infor, I know...however, not sure that my urologist cares as much as you guys might.

Peyronies Disease, or an injury?

Thanks an infinite amount.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on January 25, 2007, 05:00:12 PM
Dear Suerte

Welcome to the boards. All of us can only speculate on what might be going on with you. Some of us tend to believe that a described lesion is Peyronie's Disease, and others prefer to advise watchful waiting at this stage. All of us wish we were able to figure it (you, ourselves) out and fix it and make it better.

From my personal experiences, I can tell you that I have learned to listen to my body. I notice when things are different - and I have noticed several new "dents" on the left side of my penis in the last 9 months. I believe firmly that those dents would have been points of curvature if I had not been using the VED, and using as much in the way of anti-inflammatory medications/supplements as possible. For me, preventing worsening has been easier than trying to regain lost ground. So pay attention to your body and good for you in trying to see if you might benefit from these boards.

Additionally - and again this is from my personal experience - I know the terror of believing that something new or bad is happening, and I have noted with that changes in my erections. I now see how, in retrospect, some of the terrible things I believed were happening were not happening, but that my fears led to erectile problems. Also, it led to increased attention to things that might not matter as much.

I now understand that how my penis looks on it's way to the end-product is not that important. If I bend right or left, or have wrinkles, or feel too hard or small when flaccid - none of that is too important if my erection is unchanged.  I *KNOW* that I am paying more attention when I am worried,.

In your list of issues, some seem possibly die to stress, such as feeling hard when flaccid, or shriveling up to too small a length when flaccid. I think the differences in shape as it fills ARE important in understanding that something might be happening to your tunica albuginea. You are lucky that you went to a urologist who did not blow you off as a worrier with no problems.

I would agree with the urologist in using the vitamin E. I would also strongly suggest it be a full spectrum vitamin E, and that you read up here on other possibly beneficial supplements to add to the regimen. I was young when I deveoped my initial problems, and my main way of dealing with it was to have a LOT of sex. Now I am older and that is not as easy or as healthy an avenue for me! So now I use the VED to make sure that my penis (and more importantly, the tunica) is stretched out nice and tight - even when I am not in the mood. Reading in the vacuum device thread might help you find some afforable ways to start a VED program.

Good luck!

Tim
Title: Re: Suerte
Post by: Hawk on January 25, 2007, 09:04:23 PM
Suerte,

I could echo what Tim said but since I have little new to add, I will just say welcome. When reading to catch up, you will gain important knowledge, faster if you read the "Newly Diagnosed Highlights" board that has only the highlights of each topic. It will look much like this board but it is a read-only area that will save a lot of time (thanks to Angus).  You should still comment and ask questions here on the main board.  Here is the link to the "Newly Diagnosed Highlights" area https://www.peyroniesforum.net/index.php/board,18.0.html
Title: I think I have Peyronies Disease - I know I have Questions
Post by: TonyB on February 02, 2007, 10:24:53 PM
OK, new guy here.  Been trying to read up on your forums, but you guys are really prolific in your posts!!!  But I have gotten a lot of questions answered already, and it's nice to be somewhere where I can talk about this openly.  I have a small area (maybe the size of a small bean) on the underside of my penis on the left side.  I noticed it once a couple years ago and it went away quickly.  It came back last week and although it seems smaller it is not gone.  I went to my physical yesterday and the Doctor gave me the name Peyronies.  Of course he didn't know much about it so I wouldn't call it a diagnosis.  He told me to "Google it."  So in my search through cyberspace I was lucky enough to find you guys.

Interestingly enough I do have Dupreyton's Contracture on my right hand palm.  Again, it is in the beginning stages and I have no bending of the finger yet, although the lump seems to be getting bigger slowly.  Seems that there is some theory that connects those two things.

I do not have a problem with erections (yet) and I don't have any curvature (yet).  So basically I guess what I want to know is, what can I do at this point?  How do I get diagnosed?  If I am indeed in the beginning stages of Peyronies Disease, then what is the best course of action?  Should I be massaging it, or heating it :o  Does having sex & masturbating aggravate the condition (it doesn't seem to)?  I've read about lots of therapies, but most of them seem to deal with ED which I don't have right now.  If there's a chance I can nip this in the bud and prevent or reduce further progression I would sure like to know how.

Sorry for all the questions, but thanks for listening.  It's a little alarming when something happens down there, so I have a bit of anxiety.  I look forward to any feedback. 

PS: By the way, I'm 38, 39 in April.  Seems that this is when all the fun things start happening to our bodies!!!!
Title: Beginners Help Needed
Post by: harchunk on February 04, 2007, 10:58:36 PM
I was diagnosed about 2 weeks ago.  Have been having pain and a slight bend for a bout a monmth.   I just started taking vitamin E(urologist recomended) is it to early to consider like surgery or a V.E.D. or something else.....  :)
Title: Re: Time for starting VED therapy
Post by: Old Man on February 05, 2007, 10:20:50 AM
harchunk:

The VED can and will in most instances help with Peyronies Disease. However, the best rule of thumb that has come out of all the guys using them is that if there is pain or discomfort, do not use the VED or stop using one if you are.

So, you should determine how much pain or discomfort you are experiencing and if you think that you could tolerate the negative pressure created by the VED, then you might want to consider the VED. There are many and varied debates about how soon to use any therapy for Peyronies Disease, so my advice for you is to read all the threads posts on the main forum. There is a "child board" section that has a reduced version of the highlights of each subject, so check them out.

Lastly, I would seek out the best medical help from a qualified urologist that has experience with treating Peyronies Disease. Some uros treat the subject lightly while others concentrate their efforts toward Peyronies Disease more and those are the ones you should trust to help you. Some advocate using the VED and others do not. There are some studies being done currently using a three cylinder VED that should be reporting their results soon. One is being done in Birmingham, AL and the web site for it is:
www.vacuumtherapy.org

Suggest you also check out all the other methods of treating Peyronies Disease. There are many threads discussing the possiblities and/or results of using oral therapy too. There are highlights of these methods also on the "child board" too.

I am sure that others on the forum will be stepping in with comments on their views about which way you should go, etc. Early treatment seems to have been the best for treating this horrible mess.

Old Man
Title: to TonyB
Post by: Steve on February 05, 2007, 12:08:15 PM
Tony,

I'm glad you found this forum.  It took me a while of searching before I stumbled across this one, but it's by far the best that there is (Thanks to Hawk and all the others' shephearding).

I think you're lucker than most in that you may have caught this early enough to have a good chance at holding it at bay.  As Old Man (the VED guru) mentioned to Harchunk, check out the oral therapies section on vitamins and supplements that many swear by.  BTW, many suggest strongly that if you go with Vitamin E, you go with the full spectrum version.  Check out some of the posts by Tim, our resident physisian and fellow sufferer.

I was lucky enough to join up when the forum wasn't so large, so I've been able to keep up with a lot of the posts...you've got a lot of reading to do here, but it'll all be well worth it!
Title: Re: Steve
Post by: TonyB on February 05, 2007, 07:37:04 PM
Steve,
Thanks for that.  You're right, I've got A LOT of reading to do.  Guess I'll just take a little chunk every night and go for it.

Again, I've not been diagnosed yet, but with everything I've read it seems the most probable thing, even though I have no bending or ED problems.  Do any of you remember the very beginning stages?  This thing seems to change daily.  Today it (the little cluster on the bottom of my penis) seems to have broken up a bit, is that possible?  I've been massaging it thinking that I can break it up, but is that wise?

I'll keep reading, and welcome any feedback.

By the way Steve, love that road sign!!!  You guys crack me up; what an awesome attitude!!!

Tony B
Title: Less Trauma is Best
Post by: Liam on February 06, 2007, 06:32:56 AM
I remember the early stages of Peyronies Disease.  The worst part was the uncertainty and helplessness.  From being on the forum for some time and using my own introspection, I don't think massaging will  change things one way or the other.  The only negative outcome might be some soreness just from irritating the area.  You will not break it up.

Mild heat helps pain.

The good thing I can tell you is from the time of onset, first syptom, to "full blown" Peyronies Disease was between 6 months to one year.  If you had a symptom several years ago and just now are seeing other symptoms, you may be one of the lucky ones who never have the ED or curve.

I wish I could say either way with 100% certainty.  At least you could know for sure. 

My best advice is to take the supplements and enjoy what you got.

Good Luck!  Keep us Posted.

BTW, you have good posts.  Don't forget your subject line.  That makes it easy to look up an old post. :)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: howcanthisbe on February 07, 2007, 12:33:25 PM
anyone seen the claims that scientist have cured cancer? Im not saying the claim is true.... I havent even looked into it. I was thinking though if it was true and this drug does dissolve tumors then couldnt this drug possibly disolve the plaque for peyronies? Heres a google search on the topic, this is recent...ive only read one article about it because im busy right now. I  know I will probably get flamed for posting this but anyways heres a google  search  link:
http://www.google.com/search?hl=en&q=scientist+cure+cancer
Title: Junk sugar pills or a conspiracy?
Post by: ComeBacKid on February 07, 2007, 02:09:59 PM
HCTB,

I can't say, but I have listened to my uncle rant and rave about how there really are cures for some cancers, he claims that doctors don't want them to be revealed because they will be out big bucks and are in it for their own personal gain.  Lately he has taken up an interest in herbal medicine, saying he lost faith in mainstream medicine practice in the United States.  I also had a good friend of mine from virginia tell me her grandma had cancer and was cured after taking some pills from china or the far east.  This topic has come up on talk shows, and across the internet, I think often times we hear of these cures for cancer from eastern countries, unless someone runs a scietific test we have no real way of evaluating them.  I certainly wouldn't take someones word for it.  Naturally I'm a skeptic of pretty much everything, always looking to over anaylze a situation. However, we do have some folks on this forum taking far east pills such as horny goat weed, ginseng... etc...  Some have said these remedies have helped erectile dysfunction and what not.  However, this is a far throw from a cure for cancer, perhaps there is some truth to what herbal and eastern medicine can achieve, but maybe a full cure isn't exactly what it does.

ComeBackid
Title: Re: Debunked "cures"
Post by: Hawk on February 07, 2007, 02:27:43 PM
Conspiracies abound but the bottom line is that doctors and pharmaceutical staff die of cancer at the same rates as the rest of us.  So do their families.  The one exception is a somewhat lower rate of lung cancer death among doctors but that is easy to understand since they are less likely to smoke.

It is inconceivable that anyone with a cure would withhold it from their family.  It is also inconceivable that we cannot even keep military and CIA secrets, but that medical officials could prevent someone from spilling the big story on secret cures (a big news agencies dream story).  Now, is it possible that a drug recently showed promise in a test tube?  Is it possible there is inadequate research on some drugs or natural treatments due to financial considerations? Sure, that is POSSIBLE, but even if true, it is not a big undercover conspiracy.


Title: Re: The conspiricy is real ...
Post by: George999 on February 07, 2007, 03:43:30 PM
but it is much more subtle than the conspiracy theorists suggest.   It is also important to understand that it is a natural conspiracy.  It is not driven intentionally by the doctors (they are in fact victims of it, just a much as their patients are) or even the drug companies.  It is instead driven by a system wherein inventing a cure pays huge rewards, but discovering a cure produces zero rewards (economically).  And the cost of discovering a cure is nearly as expensive as inventing one.  This is why pharmaceutical companies spend billions on producing patentable medications and literally nothing on investigating the curative properties of common substances.  Understanding why this happens is simple.  What would you do if you were in their shoes?  It is also what drives doctors to practice medicine the way they do.  The care may not be the greatest, but the doctor ultimately has the realization that if he or she can't make enough money to eat and feed his or her family, he won't be able to provide anybody with care at all, so he makes unpleasant choices (just like all of us must from time to time).  So you wrap that all up and there is your conspiracy (and if you look really closely, you may even discover that you are a part of it).

- George
Title: Re: DCA
Post by: George999 on February 07, 2007, 04:06:48 PM
I will make this brief, since it is an off-topic response to hctb.  And the comment to hctb is, that IF you read the search results of your link thoroughly (I assume you are referring to DCA testing done by University of Alberta), you will come up with an article containing this qualification, critique, or whatever you want to call it:

QuoteFirst, I did a literature search on PubMed looking for articles with the terms dichloroacetic acid and cancer.

Although I didn't have access to all of the articles, one underlying theme stood out: DCA is an organic chemical that causes liver cancer in laboratory mice when put in their drinking water.

It is not nontoxic. It is a byproduct of another chemical called trichloroethylene (TCE), which has been a source of concern as a cancer-causing agent for some time.

So when the researchers described DCA as being 'non-toxic', that was an assumption on their part based on the fact that DCA is already approved as a prescription drug.  The problem here is that when the whole thing hits the press, it becomes oversimplified.  So while I certainly agree that such drugs should be made available on an off-label basis to people in dire straights, I think it is also important that they NOT be used as a first line treatment for patients who have a good chance of responding to conventional PROVEN therapies.  The same holds true with Peyronies.  What kinds of risks are you willing to assume in order to 'save' your penis?  If you are willing to bet your life on a cure, there are more opportunities than Carter has pills.  But sorry, if I were in your shoes I would decline that offer without a second thought.   One has to be very, very careful how one translates research data into a treatment plan.

- George
Title: Questions from a young newbie - Where to begin
Post by: changsta on March 09, 2007, 02:55:29 PM
Hello, I'm new here and I'm guessing I'll be around for awhile... Anyway,

I've known that I've had a bend in my penis nearly my entire life, but chose not to deal with it because I didn't know how and it was not of immediate concern to me. I'm only 19 years old right now, in college, and in deep trouble cuz I've never done anything with a girl and don't even know how to begin. I'm starting to face my problems though, so that's a plus. For as long as I can remember, I've had this curvature in my penis, but after reading up a bit, I think my first realization of the 'plaque' was about 7 years ago when I thought I had STD's when I've never had sex before lol. There were no pictures, so I could only guess. There's really just too much information and terms to digest. So if any of you experienced members can give me a heads up of what my lifes gonna be like and answer a few questions for me, that would be awesome.

1. I've been to a urologist, but he couldn't really do anything for me. I didn't know how to verbally communicate my problem and express myself enough to him for him to understand how much this means to me. I took a urine test and showed him my flaccid penis. And since I couldn't get it up in front of him, he couldn't do anything, except to instruct me to go home and take pictures of myself to show him later, which I didn't do. So my question is: how would I go about seeking the most efficient means of help professionally?

2. I've been so self-concious about this stuff since forever. I've been good at a lot of things, just in general. But there's always been that part of my life that's missing, that I'm afraid to seek out cuz I'm just scared i guess. How do you approach girls with this type of problem? I mean, how do you introduce it, like waht do i even say..? Especially to someone that I don't know too well who wouldn't necessarily 'be there' for me.

3. Is there a place with general basic information on the penis that a newbie can understand? I'd make this my life goal if need be, to learn where I went wrong. But I need somewhere to start first. I do have my personal theory on how I got it, but I really just need to know more. And lastly, how does the shaft of the penis connect to your belly (the top part to your pelvic bone?)?


Edit* Is there someone that knows a lot about the male anatomy that I can talk to?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on March 09, 2007, 05:32:24 PM
Where to begin indeed...

I see that you are worried, and I am glad that you are now taking steps to see if A) something is even wrong with you, B) if something can be done about it, C) if something NEEDS to be done about it

All hard stuff to take on. If you have a cell phone you can take a digital picture of your erect penis to guesstimate the degree of curvature. From what you write here, I cannot even tell if you curve at all, or if you do, to what degree (literally - how many degrees does it curve?).

Given that you are naive, and clearly smart enough to see it and admit it, I think that you are likely to learn a lot and to come away much happier once you are informed.

Many of us have curvatures to our penis and lead active and happy sex lives. Some of us have developed bends that are too severe to allow for easy sexual intercourse - and we deal with it in a variety of ways (emotional withdrawal, determined pursuit of a cure, seeking surgery, finding alternative ways to be sexual).

Hopefully you will find some help here. I will chip in with my two cents worth now:

1) Measure the degree of angulation - is it an abrupt curve or a gentle curve?

2) Seek help again - take measurements or pictures so that you are better able to get good advise. It may be very hard to do, but speaking to your mother and father will help you immeasurably. For one thing, for all of us who have changed diapers and watched goofy ten year olds prance about naked after baths, we are well aware of what the general shape of the penis is when erect, and they will KNOW if you have always been that way, almost certainly.

3) Read up on anatomy so that you can hear good advise when you get it. It as going to annoy people to have to explain basic when they want to talk about more complicated or speicific things with you.

4) A phone call to the doctors should allow him to prepare for your visit by getting an injection ready to induce an erection. If he does not have the ability to do that, then do not go to him!

These basic steps should help jumpstart you towwards a better understanding of yourself and help your ability to get help from others.

Welcome!

Tim
Title: Do I have Peyronie's
Post by: Ash on March 09, 2007, 08:46:37 PM
Hello everyone I'm 18 and I have a great fear that I may have this condition . Here's my story.
Almost 4 months ago, towards the end of November, one night I couldn't get an erection and I freaked out. From then on I had erectile difficulties, so I went to a urologist and he gave me a sample of levitra. The levitra allowed me to get normal erections, but I was very anxious after this and the problem persisted. So my local urologist referred me to another urologist to get a duplex Doppler ultrasound. The urologist induced an erection with a low dose of prostaglandin e1. The test results came out normal and the urologist told me to forget about it. The problem is,

1)About a week later (end of December) when getting an erection I noticed that I lost some length and girth. I thought that it was nothing and that it would go away but it did not. 
2)Two months after the doppler I took some pictures of the underside of my erect penis and noticed that there is some narrowing on the underside of the shaft. I've been to 3 urologists, 2 of them said they don't think I have Peyronies Disease and one wasn't sure. I have no palpable plaque- one of my urologists said he could not feel any plaque or scar tissue. When I showed them the pictures they had no explanation. I'm taking cialis nightly once a week. I'm taking 800 iu vitamin E, vitamin B, L-Arginine, Acetyl L Carnitine, Fish oils,  and Maca.

I can't recall any trauma to my erect penis. All I can remember is that I did kegel exercises for a few weeks that gave me very strong erections. Also, a week before all this happened, my upper arms broke out in hives; they were itchy before this because of a cream I applied, I don't know if it was caused by the cream or if it was stress induced.

I really don't know what to do. I have an appointment with doctor Mulhall later this month, but I think he is just going to tell me the same thing the other urologists told me. Do you think I have Peyronies Disease? Is there anything I should be doing now? Please help

Title: Re: Welcome to Ash & Changsta
Post by: Hawk on March 10, 2007, 12:00:53 AM
I am overwhelmed that we have 2 new teens that have joined us here in one day, with problems that seem to go beyond common obsessing.  I guess it is this that makes us glad that we have all contributed to a place where you can get support. 

Ash,
For now (I am in a time crunch) I want to say that your supplements and your plan of attack seem to be on target. Be sure to write your questions down when you go to see Dr. Mulhall and give him a copy before you start asking.  I and others here have also seen him.  Unless you get a different approach, he will check the stretchability of your flaccid penis and palpitate for plaque..  You will receive an injection for an erection, and a quick visual exam. He will discount any possibility that any supplement can help.  He will offer Verapamil injections or colchicine.  I think he will likely discount the VED although I may be wrong since I did not discuss it with him for Peyronies Disease but rather oxygenation.

PS: I am a a bit shy of penile injections since I am convinced that 8 months of twice weekly injections under Dr. Mulhall's direction caused my Peyronies Disease. (click on this quote to see my history)
Quote from: Hawk on October 03, 2005, 01:26:46 PM

Changsta,

Tim gave you some great advice.  Statistically, and in the absence of injury, it is far more likely you have a congenital curve rather than Peyronies Disease.  IF that is true, you can expect that it will not progress.  If it is a manageable curve it may not require treatment and may be a uniqueness that proves to be an asset.  If it does require adjustments (physical or psychological) or surgery, it will wait until you have time to sensibly learn and apply wise decisions.  Right now the main thing we know is that you say you have a curve and it is a psychological issue with you.  It could be that the psychological aspects are all that need to be addressed.

Welcome and good luck to both of you young men.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: changsta on March 10, 2007, 09:31:36 AM
Given that there aren't an overwhelming number of members, you veterans should easily be able to educate new members as they step through the door. The information about peyronie's is too vague and scattered. I still have yet to find a good source of information. The reason why I'm saying this is because I think I know why I have it. I'm not just talking about the shaft, I'm talking about where the shaft ends and what the tubes are that continue inside of you. Forgive my attittude, but there really should be a section with all the information on peyronie's (and the male anatomy in general) laid out, easy to access and read. You can't say that library has all the information you need. If you want me to go through every thread and post to find bits and peices, that's just not going to work. I've found good info sites on hypothesis for causes and what the current available treatments are, but aren't we also trying to learn more about it as well and find new ways of treatment or better understanding? And if there aren't any experts on the field, or knowledgable people here, then I don't know what I'm here. Stories and Feel better posts are just useless information, we want results.

Don't get me wrong, I do appreciate the advice and it has been helpful. Thanks, and I do realize I have a lot of homework to do.
Title: Re: Changsta - More Inormation
Post by: Hawk on March 10, 2007, 10:15:40 AM
Changsta.

Thanks for the input.  If you do not feel informed or supported then I think we do need to consider some changes.  I have read your post slowly twice however, and I think I am still missing some of your points.  A few quotes I am having trouble understanding are:
Quoteyou veterans should easily be able to educate new members as they step through the door.
QuoteThe reason why I'm saying this is because I think I know why I have it.
Quotethere really should be a section with all the information on peyronie's (and the male anatomy in general) laid out,
I think the last point would take a 2000 page book with many areas of disagreement.
Quoteif there aren't any experts on the field, or knowledgeable people here, then I don't know what I'm here.
On this point, make no mistake.  We are electricians, computer specialists, doctors, teachers, students, psychologists, authors, pharmacists, janitors, police officers and actors.  We are here to share information and support each other because we could find no other suitable sources.  None of us, standing alone, are experts.  We all have something to share and bring to the table.  That includes you.  Frankly, I have yet to be convinced that anyone has comprehensive expert knowledge on Peyronies Disease, including leading urologists.

I ask that you check out our website http://www.peyroniessociety.org/
and the Newly Diagnosed (read only) section of the forum.  This section contains highlights of the topics found here on the main forum. https://www.peyroniesforum.net/index.php/board,18.0.html

AFTER doing so, I then suggest you clarify your suggestions on specifically what we could do to improve the site, and how we could do it.
Also please indicate how you would be willing to help if that is an option.
Title: Re: Help with male anatomy
Post by: Old Man on March 10, 2007, 10:41:11 AM
Changsta:

Sorry to hear that you are experiencing the problem you are relating about on this forum. One suggestion for you that might help rather than doing a reply by reply search on this forum is this: type in an excerpt of what your question is in the seach block and it should help with getting to a specific topic sooner.

Also, in order to get a better knowledge of the male anatomy is to do a Google search for it. Just type in male anatomy, hit search and you will see many and varied items concerning this topic. Also, you might want to do a search on the website for the Mayo Clinic. They have good reference materials on the subject. WebMD also has a good reference file on many and varied subjects concerning male and female heath questions, so try that search also.

If we can help in any way further, just let us know and we will be there for you. By saying we, I mean all the guys and gals on this forum.

Good luck to you, Old Man
Title: Library and The Morphing Penis
Post by: Liam on March 11, 2007, 07:25:49 PM
A library has many good illustrated books on anatomy.  A medical library is even better.

On a seperated note,  if you look at your penis long enough, it does funny things.  Don't let that make you worry.  If you obsess too much, seek mental health counseling.  I am serious and not trying to be unkind.  It will help.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: sandiegofan on March 12, 2007, 07:07:55 PM
i was wondering if the curvature/disease is deadly?
Title: Re: SanDiagoFan
Post by: Hawk on March 12, 2007, 07:20:28 PM
Peyronies Disease is a fibrotic disease of the penis and as such does not progress to penile cancer or any other life threatening disease
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Ash on March 12, 2007, 07:48:38 PM
Hawk,
Even if the doctor does examine my flaccid penis, I am pretty sure he will not find any plaque-I have already been examined by another good urologist who told me I didn't have any. What baffles me is the loss in girth and slight loss in length--it doesn't make any sense to me. I know its possible to have Peyronies Disease without palpable plaque but that would be extremely rare for someone like me. I'm hoping I don't have that. Do you think if I get another doppler ultrasound, or MRI of the penis, at this point in time (it's been 3 months) If I had the condition would evidence (ie. Inflammation, scar tissue) show up on the test?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on March 12, 2007, 11:30:06 PM
Ash,

If you are not getting fully hard, then you will not have the girth or the length that you normally have. If you think that you have a disease of the penis (whether or not you actually have it), do you not see how this might affect your ability to get erect?

"Gee - let's see if my penis is going to look deformed and weird" does not sound like an erection-inducing thought. Not at all like "Darling let me look at you naked" sounds.

So, before you drive yourself nuts, get a drug-induced erection. If it is normal, then you are at the end of your journey, and you know that you can go to work on your mild anxiety disorder, but do not have to worry about your penis. If it is abnormal then you can start to work on what to do about it.

I kind of doubt it Peyronie's or even abnormal at all from what you have said.

Tim
Title: An easy test for Peyronies Disease cures - Maybe too easy
Post by: Hawk on March 13, 2007, 10:33:05 PM
Peyronies Disease can only be reversed if: something interrupts the process and allows slow normalization through the normal cell replacement activity that takes place with all of our cells in all areas of the body.  The other possibility is if something actually has the ability to attack the plaque and break it down.  That requires both the ability to break down scar tissue and to get it to the scar tissue.

Since plaque is scar tissue, I submit that plain dermal scar tissue would respond to any agent that would impact Peyronies Disease plaque.  Since dermal scar tissue is less aggressive, easier to access, and objectively measure, it should be an obvious test for the anti-scar activity of any agent.  Can anyone think of any sound reason why topical verapamil, heat, DMSO, Thacker formula, electrical stimulation, or any other such treatment would not be expected to decrease a dermal scar if it is expected to decrease Peyronies Disease plaque?

If no one can find a hole in this logic, than I say the proof is on a simple dermal scar.  We all have them.  In fact, why would the same not be true of systemic treatments that we take internally?  Is this logic flawed? If it cannot be shown to be flawed, then it lays out an obvious test for the efficacy of almost every treatment.  This test would demystify all claimed treatments on the subject of ability to attack scar tissue.  The only other issue would become delivery to the plaque and if the plaque would be MORE problematic.  It is very doubtful that Peyronies Disease plaque would be less problematic.

Simply put, if topical verapamil cannot reduce my kness scar, how would it ever reduce my penile plaque?

Your thoughts and input please.



Title: Easy test...
Post by: Steve on March 14, 2007, 10:09:13 AM
:-\ Interesting idea Hawk.

I think that it all hinges on the assumption that all scars are the same.  I'm not a doctor, but I think that if a coorelation can be determined between Peyronies Disease plaque (scar) and dermal scar, than your test would be valid.  I suspect that the research has already been done to extract Peyronies Disease plaque by someone.  If we can find their research and find out how to compare the two tissue types, we'd be a long way to validating your testing procedure.

Anyone out there want to pick up the ball and dig out the research?

Steve
Title: Steve - The nature of Peyronies Disease Plaque
Post by: Hawk on March 14, 2007, 10:57:43 AM
Steve,

The following is my understanding of this issue.  Peyronies Disease plaque has been thoroughly examined and microscopically and it is very similar to hypertrophic scaring and keloids.  If anything, these are MORE resistant to control than normal dermal scaring.  If true, than anything that does not work on dermal scarring, would could not be expected to work on more aggressive scarring such as keloids, hypertrophic scarring and Peyronies Disease.
Title: Scar Test
Post by: Steve on March 14, 2007, 11:54:23 AM
;)  OK.  Then the dermal scar 'test' would be a screening test...if it does nothing for a dermal scar, than it would probably do nothing for keloid/hypertrophic/Peyronies Disease types of scar.

Looks like it's time for everyone to test their 'favorite' cure against a dermal scar...now, how do I apply a VED to a scar on my knee  ;D

Steve
Title: Re: VED usage on knee scar
Post by: Old Man on March 14, 2007, 12:03:17 PM
Steve:

Just had to jump in on this one! What you do is lubricate the scar well, lubricate the opening of the VED cylinder, place it over the scar and proceed to pump it up.

Just kidding, but it could work.

Old Man
Title: VED/Knee
Post by: Steve on March 14, 2007, 12:12:40 PM
 ;D OK, but how do you use the multi-cylinders :D

(maybe we should move this to the Light Side thread)
Title: Re: An easy test for Peyronies Disease cures - Maybe too easy
Post by: George999 on March 14, 2007, 07:04:12 PM
Hawk - I agree with you completely on this issue.  In fact, one way in which I evaluate the supps I'm taking for Peyronies is to carefully watch their effect on dermal scars.  I actually am at the point where I am watching dermal scars disappear gradually before my eyes.  But even that takes a long time to happen and as you point out, Peyronies is much more stubborn.  But I feel that the very fact I am getting a response at the dermal level is an indication that I am headed in the right direction.  I figure that if a dermal scar dissolves in a year or two, then maybe ten or fifteen years from now the Peyronies will clear.  Its a very long process and also very dynamic.  There have been times that I could have panicked at the apparent aggressiveness of Peyronies, only to have it retreat completely within a few days.   It requires a tenacious approach that looks at things from the long term, otherwise it will drive you nuts.

- George



Quote from: Hawk on March 13, 2007, 10:33:05 PM
Peyronies Disease can only be reversed if: something interrupts the process and allows slow normalization through the normal cell replacement activity that takes place with all of our cells in all areas of the body.  The other possibility is if something actually has the ability to attack the plaque and break it down.  That requires both the ability to break down scar tissue and to get it to the scar tissue.

Since plaque is scar tissue, I submit that plain dermal scar tissue would respond to any agent that would impact Peyronies Disease plaque.  Since dermal scar tissue is less aggressive, easier to access, and objectively measure, it should be an obvious test for the anti-scar activity of any agent.  Can anyone think of any sound reason why topical verapamil, heat, DMSO, Thacker formula, electrical stimulation, or any other such treatment would not be expected to decrease a dermal scar if it is expected to decrease Peyronies Disease plaque?

If no one can find a hole in this logic, than I say the proof is on a simple dermal scar.  We all have them.  In fact, why would the same not be true of systemic treatments that we take internally?  Is this logic flawed? If it cannot be shown to be flawed, then it lays out an obvious test for the efficacy of almost every treatment.  This test would demystify all claimed treatments on the subject of ability to attack scar tissue.  The only other issue would become delivery to the plaque and if the plaque would be MORE problematic.  It is very doubtful that Peyronies Disease plaque would be less problematic.

Simply put, if topical verapamil cannot reduce my kness scar, how would it ever reduce my penile plaque?

Your thoughts and input please.




Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Jack on March 30, 2007, 02:36:29 AM
Gentlemen, how's it goin.  I'm always hoping that I'll never have to come back here (becuase my problems are gone, not becuase you guys aren't good company, of course), but unfortunately I'm not so lucky.

Well, on to my question....  My case of "Peyronies Disease" (assuming that's what it is, which I couldn't figure out what else it could even be) seems extremely unusual from everything I've read.  Like I've explained before, my dick, while flaccid, feels like a rubber tube for lack of a better term - it's hard underneath, and will usually have a bend to the right.  Also, I never have morning wood... Unless I take my etodolac, but even then, the erections aren't rock hard and dissapear either almost immideately, or within a couple minnutes.  However, I have NO bend while erect, and I can feel no "nodules", as they're reffered to, and I also have NO pain when erect (when flaccid though, I willl occasionally get a "tightening" feeling, which can be uncomfortable).  I will never get spontaneoous errections anymore, and it takes ALOT of stimulation to get it to full mass, and even then it's a b*tch trying to keep it up.  Another thing, the head is usually cold and discolored, as if the blood supply to it is weak.

My question: is this even Peyronies Disease?  There's no bend while erect, and aside from the head not inflating completely, and assuming I could hold a sturdy erection, a woman wouldn't even know there's a problem.  What would this even be if it isn't Peyronies Disease?  Why do I get no bend while erect, but one while soft?  Why is my dick all hard and rigid when it's supposed to be flaccid, and why are there no "nodules" present?

Are there any other guys with a case like this, and if so, what's the difference? 

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on March 30, 2007, 01:16:54 PM
Jack,

You pose good questions. I think that they would best be answered with some data. The data I would want to gather are:

1) An exam at the hands of an experienced and thoughtful urologist.
2) A color doppler ultrasound to assess flow while flaccid and erect (drug induced erection via an injection), and to look for calcification and/or fibrosis.

It is possible that you have a fibrotic condition that is similar to but not identical to Peyronie's. It seems that when you are erect, whatever "thickening" you have is still stretchy enough to allow for a full erection. The fibrotic tissue could be the tunica or even in the corpora cavernosa itself. It sounds more like the latter to me. If you have some formation of scar in the chambers that hold blood (in spongy tissue that can easily engorge) then that could account for a rubbery feeling, but an ability to still get erect. Such a anatomic location for the problem might also account for why it is that you have difficulty getting erect.

If I were you, I would very much want to know how my erection looked after using a VED - and particularly I would want to see if the head looked healthier.

It is possible that you have a problem with either nerves or blood vessels, and the rubbery feeling comes from a generalized "turtle effect" of the penis wanting to shrink up, like after diving into cold water (which is accomplished by smooth muscles contracting down). At such times, the penis is firmer than usual, but smaller too (obviously). Then, with erection, the penis can fill up, but with difficulty or only reluctantly.

Either possibility sounds reasonable, but in either event, it seems that blood flow to the head is impaired, and this mandates a urologic evaluation similar to the one I just described. A general health survey is indicated as well to look for diabetes or heart disease, which could affect blood vessel function.

Tim
Title: ED w/ PENTOX
Post by: PainIsGrowth on April 01, 2007, 09:35:15 PM
Hello All,
I was wondering if anyone who has taken Pentox (Trental) has experienced a worsening of ED after beginning the treatment.  I have noticed an more full flacid size, but it is even harder to achieve erections now?  Also, how long has anyone taken it for before they noticed improvements in ED or bend?  Does Viagra or another PDE5 inhibitor w/Pentox improve ED significantly?  Finally, how serious was the onset of ED once the peyronie's symptoms began manifesting.  Mine was like a 80% erection reduction ability almost overnight.  Is this typical for not a major bend?  Thanks to all and goodluck!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: gibson101 on April 07, 2007, 01:54:50 PM
Jack

I have a very similar situation that you have described except erections are not such an issue for me. I can get erections but they are not the same size as before.... I can feel two long hard lines runnig from the base to the top which I do not know what they are. I have been to see many urologist even some of the top and for some reason unbeknown to me they do not seem to think their is a problem or take me seriously. When I go to them my little man shrivles up from nerves and you cant feel those two long lines which I want them to see.....I am young so I guess that contributes to them not taking me that seriously. But its maddening because do they think I just woke up one morning and imagined my penis hardening??anyway.......if you go to the urologist please please let me know what comes of it!! I am on pentox and L-arginine and CIALIS which im hoping will help over time...i have seen a tiny improvement but nothing significant.

Good luck
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ThisSux on April 14, 2007, 09:15:49 PM
Quote from: gibson101 on April 07, 2007, 01:54:50 PM
Jack

I have a very similar situation that you have described except erections are not such an issue for me. I can get erections but they are not the same size as before.... I can feel two long hard lines runnig from the base to the top which I do not know what they are.

Jack,

After an injury 2 years ago from sexual activity while not fully erect (after already going twice... :P), I developed 3 hard lines running from the base to the top as well. They are thicker towards the base of the shaft and run straight down to the glans (and get thinner as they go). I have some shrinkage where they are their thickest and also unfortunately daily pain. They feel almost like tendons.

Other symptom is that penis seems much more succeptible to injury.

I went to Dr. Mulhall in NY about 1.5 years ago and he told me "I dont detect any plaques but you do have longitudinal ridges that some people think are indicative of peyronies...I am not so convinced" he also said that I dont have "typical" peyronies disease. I suspect he might change his opinion if I saw him again.

I hope this helps you in some way. I never had a doppler done but now I am considering it...as well as considering getting a script for pentox/viagra.

Right now I am just taking 400 IU E, 2 grams ALCAR and 3 grams Arginine  daily.

TS
Title: Lymphangitis and Mondor's Phlebitis
Post by: Liam on April 14, 2007, 09:59:18 PM
These conditions have symptoms similar to what have been described.  Try doing a Google search with these terms.  Try adding "penis" to the search.

Also, search the forum for references to these two conditions.  When you go to your doctor, ask about them by name.

Hey..... at least its something to rule out.

Liam
Title: new abstracts out in the literature
Post by: Tim468 on April 16, 2007, 01:15:16 PM
Hre are some latest publications and (for some of them) the abstracts.

I think the jury is still out on SIS system of grafting - but I personally think that use of the VED might improve outcomes for any grafting material (including SIS).

Levine showed that verapamil by iontophoresis is just a bit better than saline by iopntophoresis - but both were NOT compared to doing nothing at all. So it is still not clear if either are better than nothing.

The last article tells us nothing new - being a review article only.

Tim

**********************************************


Full Text Link Available
UI 17296450
AU Knoll LD.
FA Knoll, L Dean.
TI Re: porcine small intestinal submucosa is not an ideal graft
  material for Peyronie's disease surgery. T. John, G. Bandi and R.
  Santucci J Urol 2006; 176: 1025-1029.[comment].
CM Comment on: J Urol. 2006 Sep;176(3):1025-8; discussion 1029;
  PMID: 16890683
SO Journal of Urology.  177(3):1204, 2007 Mar.
PT Comment.  Letter.

<2>
Full Text Link Available
UI 17296390
AU Greenfield JM.  Shah SJ.  Levine LA.
FA Greenfield, Jason M.  Shah, Sneha J.  Levine, Laurence A.
IN Department of Urology, Rush University Medical Center, Chicago,
  Illinois 60612, USA.
TI Verapamil versus saline in electromotive drug administration for
  Peyronie's disease: a double-blind, placebo controlled trial. SO Journal of Urology.  177(3):972-5, 2007 Mar. AB PURPOSE: While surgery remains the gold standard of therapy to
  correct the acquired curvature of Peyronie's disease, the search for
  a less invasive therapy continues. Transdermal drug delivery was
  proposed to be superior to oral or injection therapy because it
  bypasses hepatic metabolism and minimizes the pain of injection.
  After electromotive drug administration with verapamil tunica
  albuginea specimens were demonstrated to contain detectable levels
  of the drug. Due to varying success with verapamil as injectable
  therapy for Peyronie's disease we performed a double-blind, placebo
  controlled trial to determine the effectiveness of verapamil
  delivered through electromotive drug administration. MATERIALS AND
  METHODS: A total of 42 men with Peyronie's disease volunteered to
  participate in this study, which was approved by our institutional
  review board. A genitourinary examination was performed on all
  patients, including plaque location, stretched penile length,
  objective measurement of curvature after papaverine injection and
  duplex ultrasound. Each subject was randomized to receive 10 mg
  verapamil in 4 cc saline or 4 cc saline via electromotive drug
  administration. A Mini-Physionizer (Physion, Mirandola, Italy)
  device was used at a power of 2.4 mA for 20 minutes. Treatments were
  performed 2 times weekly for 3 months. After 3 months each patient
  was reevaluated with physical examination and duplex ultrasound by a
  technician blinded to the treatment received. A modified erectile
  dysfunction index of treatment satisfaction questionnaire was also
  completed by each patient. RESULTS: A total of 23 patients were
  randomized to the verapamil treatment group (group 1) and 19 were
  randomized to the saline group (group 2). There were no significant
  differences between patient groups with respect to patient age,
  disease duration or pretreatment curvature. In group 1, 15 patients
  (65%) had measured improvement (mean 9.1 degrees, range 5 to 30), 5
  (22%) had no change and in 3 (13%) the condition worsened. In group
  2, 11 patients (58%) had measured improvement (mean 7.6 degrees,
  range 5 to 30), 7 (37%) showed no change and in 1 (5%) the condition
  worsened. To better evaluate effectiveness the total number of
  patients experiencing significant improvement (20 degrees or
  greater) was calculated and compared. Seven patients (30%) in group
  1 and 4 (21%) in group 2 achieved this criterion. Although a greater
  percent of patients treated with verapamil had improved curvature,
  the results were not statistically significant. CONCLUSIONS:
  Although a greater percent of patients treated with verapamil in our
  electromotive drug administration protocol had a measured decrease
  in curvature, the results were not statistically significant.
  Further research is necessary to determine whether electric current
  may have a role in the treatment of Peyronie's disease as well as if
  verapamil delivered via electromotive drug administration may have a
  role as effective treatment. Electromotive drug administration is a
  treatment option in the patient whose major complaint is pain or in
  the patient with mild curvature who does not wish to undergo
  intralesional therapy or surgical correction.
PT Journal Article.  Randomized Controlled Trial.

<3>
UI 17287870
AU Akin-Olugbade Y.  Mulhall JP.
FA Akin-Olugbade, Yemi.  Mulhall, John P.
IN Department of Urology, Weill Medical College of Cornell
  University, New York Presbyterian Hospital, NY 10021, USA.
TI The medical management of Peyronie's disease. [Review] [62 refs] SO Nature Clinical Practice Urology.  4(2):95-103, 2007 Feb. AB There are a wide variety of medical treatments that are available
  to the practicing urologist, including oral agents, topical creams
  and gels with or without iontophoresis, intralesional injection
  therapy, radiation therapy, extracorporeal shockwave therapy, and
  laser therapy. Medical management of Peyronie's disease might be a
  valuable treatment option for this debilitating disorder, especially
  in the early symptomatic stages of the disease. Although no single
  modality has been demonstrated to have superior efficacy,
  intralesional therapy appears to confer some benefit. Multicenter,
  large-scale, randomized, controlled studies are necessary to fully
  establish the efficacy of the available treatments. Until such
  trials are conducted, a rational approach involving combination
  therapy is the most appropriate method to treat these patients. In
  this Review, the current medical treatment options available for the
  management of Peyronie's disease are discussed and a management
  algorithm is proposed. [References: 62]
PT Journal Article.  Review.
Title: Peyronies Disease & RAYNAUD's DISEASE (phenomenon)
Post by: mark501 on April 26, 2007, 01:30:37 PM
Is there anyone on this forum with Peyronies Disease that also has a diagnosis of having Raynaud's Disease? Raynaud's is  sometimes treated with low dose calcium channel blockers. If you are being treated for Raynaud's with calcium channel blockers, has it had any effect on your Peyronies Disease?
Title: Penis enlargement question
Post by: bodoo2u on April 27, 2007, 12:17:47 PM
I can see that someone has put a lot of effort into developing this website on promoting penis enlargement techniques combined with their products http://www.herballove.com/library/resource/penisenlargement/ballooning.asp

I couldn't find anything on this forum, but I'm sure it has been addressed, because thankfully we discuss it all here.

My question is this: are there any techniques or products that will grow a penis, healthy or otherwise. I, of course, have Peyronies Disease and I have discussed the use of a VED with many of you on the forum. I guess what I'm asking is whether the different parts of the penis be changed to increase length and girth? What do the doctors say? What about the alternative practitioners; what do they say?
Title: To Keep What We Have
Post by: Liam on April 27, 2007, 07:35:28 PM
The realistic goal of traction or VED is to regain some of what we've lost.  I think both techniques are of benefit.  But, I don't know of any real way to increase your actual size above what God gave you. 



Liam
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: youngPD on April 27, 2007, 09:32:32 PM
Hi again
(and thank you Liam for your last greetings in response to my previous post..)
I have a severe case of Peyronies Disease  (I am 33 ,healthy and fit apart from my Peyronies Disease)
I have All the other "gifts" ,who came like in a package deal : shrinkage ,ED (can't maintain an erection unless constant manual stimulation,and I have diffused fibrosis over the organ. I have to notify that the onset of my Peyronies Disease has started after prolonged masturbation when I heard kind of "click" coming from beneath my left testicle.)
I have some questions I would like to ask the group:

1.I have a pain at the area of my left testicle (under it),and as I keep masturbating more then few minutes ,I feel kind of "waves" feeling and a moderate uncomfortable feeling and a bit of a pain in that area.
I have been to a urologist about it but he found nothing.
Does anyone know about it a thing ? what can be possibly done ? shell I limit myself ?

2.Has anyone ever been to a situation of meeting a girl and explaining all of the issue ? have you done so after deeply getting to know eachother or telling this right at the beginning ? what was the response ? how did she react ,knowing you can't have sex with her or at least no penetrative ?

Thanks alot
Title: Re: Young Peyronies Disease - Topics matter
Post by: Hawk on April 28, 2007, 08:55:48 AM
Young Peyronies Disease

I offer a suggestion on posting that may help you get answers.

All of your questions are good, but instead of grouping questions on treatment, cause, and psychological issues, all in one post under a catch-all topic like "Open Questions that won't fit under any other topic",  Try asking 1 or 2 questions under "Causes", 1 or 2 under specific treatment methods, and asking relationship or coping questions under "Psychological Aspects".  You are more apt to get responses.  Even more importantly, and the answers will be in a place that makes the forum more useable for all that visit the forum looking for information.

Good Luck
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: howcanthisbe on April 28, 2007, 12:21:30 PM
I have a quick question for anyone who can help. Is there a difference between scar tissue and plaque? Does scar tissue turn into plaque or does scar tissue remain like scar tissue on a normal body wound? Im just wondering because the waisting effect/hourglass effect im having seems to be scar tissue that doesnt inflate correctly, but will this scar tissue turn into hard plaque or just remain a bit unflexible?
Title: Re: HCTB - Scar Tissue Vs Plaque
Post by: Hawk on April 28, 2007, 12:50:37 PM
HCTB,

Plaque and scar tissue are both pretty general terms.  Both words have several general uses.  In the case of Peyronies Disease however, the terms are synonymous.   Scar tissue / plaque, can calcify, but that is by no means a certain progression.  As the article that Liam just posted states, it is impossible to guess which plaques may grow, which ones may stabilize, and which one may reduce.  The same is true for which ones may or may not calcify.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: howcanthisbe on April 28, 2007, 01:15:41 PM
Thanks Hawk. Its just so hard to realize why some scar tissue doesnt harden while others do? Why would scar tissue not continue to harden while others scar tissue does? I do not understand, scar tissue does not harden on the body. Like for instance I have a scar on my foot that has been there for 9 years now and its not hard, its just rough. Why is the tissue in the penis different? I have had this area of scar tissue for around 10 months, I just hope it does not start to harden. Thanks for the help.
Title: Re: Scar tissue
Post by: George999 on April 28, 2007, 02:30:07 PM
ALL TYPES of tissue can form scar tissue.  The progression path for SKIN scar tissue is not necessarily the same as that for BONE scar tissue, TENDON scar tissue, or TUNICA scar tissue.  In fact no one ever seems to mention MUSCLE scar tissue.  Perhaps that is because muscle tissue has the unique ability to turn scar tissue into a growth industry.  When you get scar tissue in the muscle from heavy exercise, it in effect, simple turns on the growth process and your muscles not only heal quickly and completely, but gain in mass and strength along the way.  And then of course, there is ORGAN scar tissue which follows its own unique course.  So what we see is that some types of scar tissue, muscle scar tissue for example, is PRONE to heal.  Other types of scar tissue, skin scar tissue for example, are PRONE to remain stable.  And still other types of scar tissue, like tunica scar tissue, are PRONE to worsen.  That doesn't mean they are certain to progress, only that that is the likelihood, given the environment in which they typically develop.  A lot of this has to do with the environment which breeds the scar tissue.  In the case of muscular scar tissue, scar tissue is simply a normal process whereby muscle tissue grows and matures.  In the case of organ scar tissue, scar tissue is the product of some biological process that has gone horribly wrong.  Tunica scar tissue is very close to that category.  There are likely multiple factors behind its development and that is what makes any attempt at curing it so difficult.  It entails isolating and remedying a number of multiple factors simultaneously to potentially achieve a gradual cure.  And since the potential cure is gradual, it is extremely difficult to successfully isolate all the factors fueling the condition.  Skin scar tissue lies somewhere between those two extremes.  It is more common for skin to be scarred in the normal course of life AND it is more common for skin to heal normally and less common for skin scar tissue to progress in an out of control fashion ALTHOUGH that CAN happen.

- George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: howcanthisbe on April 28, 2007, 04:09:51 PM
Thanks George999, I understand what your saying. I guess its always going to be different also from person to person. Some scare harden some dont.
Title: Eggs question
Post by: bodoo2u on April 30, 2007, 07:16:53 PM
I read an earlier post where someone said he avoids eggs. I can't seem to find it again and I am hoping that someone can tell me if eggs have an adverse effect on Peyronies Disease. Anybody have any info or know the reason the poster decided to leave them out of his diet?
Title: Liquid Chicken
Post by: Liam on May 01, 2007, 05:36:53 AM
I would imagine they were avoiding eggs because of the high fat content.  High cholesterol has been linked to Peyronies Disease.

Liam
Title: Re: Eggs - Forum Search Feature
Post by: Hawk on May 01, 2007, 09:30:46 AM
One of the benefits of this forum over previous forums is a good search feature.  To be most useful, go to the SEARCH button next to the HELP button.  Type in EGG and click show results as messages.

If you do, you will find no posts discussing a connect between Peyronies Disease and eggs.  I also have never read such a post.  I could give additional comments but since the point has never been seriously advanced, there is no point in dismantling it.

My point is that all members should become very familiar with our search feature.  The few minutes it takes is time well spent.
Title: Eggs
Post by: bodoo2u on May 01, 2007, 11:43:32 AM
Thanks Hawk,

I went to another forum a couple of days ago. Maybe I read it there.
Title: Links to Peyronies Disease
Post by: Liam on May 01, 2007, 01:04:54 PM
Quote from: Liam on May 01, 2007, 05:36:53 AM
I would imagine they were avoiding eggs because of the high fat content.  High cholesterol has been linked to Peyronies Disease.

Liam

I have come to believe everything ingestible belongs to one of two groups, contributors to Peyronies Disease or treatments for Peyronies Disease.
Title: New Q&A on peyronies....
Post by: Rico on May 03, 2007, 03:48:10 PM
The new Q & A on peyronies on   http//www.peyronies.org/pages/forum.htm   just came out for Jan and Feb 2007   

Found it interesting that one person said he was on pentox for a year and didn't have good results and if he should just stop it and learn to live with the hour glass and lost of length, the good doctor said, yes, that is a good idea, you won't get back the lost length.....

He doesn't talk about the ved or traction.....

Anyway something to read:)...

Rico
Title: Re: New Q&A on peyronies....
Post by: Liam on May 04, 2007, 09:50:12 PM
Quote from: Rico on May 03, 2007, 03:48:10 PM
The new Q & A on peyronies on   http://www.peyronies.org/pages/forum.htm   just came out for Jan and Feb 2007   

And I thought I was hopelessly behind. :P

How would you like to be in their waiting room? ;)
Title: General Question about Plaque
Post by: Liam on May 16, 2007, 11:46:12 AM
OK  This is an oddball post (even for me ;))   

I had manipulation under anesthesia (MUA) twice for adhesive capsulitis.  The doctor just rips the adhesions free.  The sound (so I'm told) is like Velcro.  I never asked the doc what happened to the "scar" tissue.  I don't "feel" it.

This leads me to the Leriche technique.  If a discontinuity in the plaque (or whatever ::)) is introduced, does the body break down and absorb said problem tissue?


Liam

My prayer for the day: Thank You Lord for quotation marks and parentheses.  AMEN
Title: Re: PainIsGrowth - Priapism Treatment
Post by: PainIsGrowth on May 16, 2007, 06:18:39 PM
I know this forum has a lot of experience with regards to all penile type conditions and treatments, so I thought I'd throw out this question.  The peyronie's like symptoms I currently experience, severe ED, penile length and girth loss, and some waisting/hinging near the base, have arisen after I experienced an episode of idiopathic priapism lasting approximately 6 hours.  Peyronie's disease has the closest subset of symptoms to my condition as any (partially treatable) penile condition I have found.  Priapism damage seems even more bleak with regards to treatment than peyronie's!!  Do you think it is resonable to try and treat the condition the same as you would treat peyronie's?  I'm been taking the pentox, cialis, and l-arginine for around a month and half, but have not seen any positive results as of yet.  In the case of priapism, the main damage comes from hypoxia, cells dying from lack of oxygen, and resultant penile fibrosis.  Shouldn't this theoretically be similar to the damage people experience from peyronie's?  Is the fibrosis of peyronie's typically confined to the tunica, whereas with priapism it is widespread and more within the corpus cavernosa?  I know that healing seems to take at least 6 months on the pentox reports published so far, but I haven't seen any user posts with significant improvement.  There is the one case study Dr. Lue published about a guy who responded very well to it, but took it for over 2 years.  Who on this forum as taken pentox for at least 3 months and seen any kind of progress?  I think we should set up a poll to, like the verapamil poll, to judge the effectiveness of this drug on the forum's population.  Also, any other tips that might assist in treating endothelial damage or tissue damage from the priapism would be much appreciated. 
Title: Re: PainIsGrowth - Priapism Treatment
Post by: Tim468 on May 16, 2007, 07:05:51 PM
Painisgrowth

You are right about the similarity of Peyronies to the penile fibrosis after priapism. The use of pentox, viaga and arginine were shown to be helpful in a case report for two men with priapism. In their case, neither ended up with any deformity, and both were sexually functional, although I think one required viagra (he had required viagra before he developed priapism also), and the other needed a VED to get an erection also (I think!!)(memory is not perfect...). So, these two guys were treated with the drugs soon after developing priapism to PREVENT the fibrosis, and it seemed to work.

Another fellow has fibrosis and calcifications from Peyronies Disease and he got better gradually with P/V/A. It took him a year to make significant gains, and he elected to continue for another year and did show firther improvement.

I think that the VED might make some sense in your case as well as using the PVA cocktail.

I think it is too early to assess the value of PVA here - no one has been on it long enough yet.

Liam - I do not know what happens to the scar tissue after the release - probably it simply stays there, but is not one large adherent mass, so the shoulder has more mobility.

I do not think I would want to allow anyone to wrench on my penis under anesthesia until they heard a sound like velcro! But the Leriche technique may simply allow for more stretchiness of the mass of tissue without actually tearing it asunder. If that happened to the tunica, one would have excessive leakiness (otherwise known as "bleeding") that would lead to vascular insufficiency ED. Not a great outcome.

Tim
Title: Excessive Leakiness
Post by: Liam on May 16, 2007, 07:40:15 PM
Not good at all.

I must admit feeling a bit encouraged by this line of thinking, though. (The part about breaking the plaque loose)
Title: Re: PainIsGrowth - Priapism Treatment
Post by: George999 on May 16, 2007, 07:42:11 PM
I think we are getting a bit off topic in this thread since it is supposed to be a discussion of possible causal factors, not treatment options.  I do wish to say however, that I think there tends to be a fixation on finding 'the magic bullet'.  As much as I hope that something like that will be identified, we are definitely  not there yet, and I would caution anyone tempted to put there hopes in any one treatment approach, whether that is accomplished by taking the PAV cocktail or having your chiropractor snap your penis like they snap people's necks.  There are just all of these options out there from the conventional to the inane.  But no one option is a panacea, at least not yet, and I am not convinced that we will ever find one (I hope I am wrong).  At this point a multifaceted approach holds the most promise.
Title: Re: PainIsGrowth - Priapism Treatment
Post by: Hawk on May 16, 2007, 09:47:06 PM
I think it is fair to say that at least much of the resulting damage from priapism is in fact triggered Peyronies Disease.  I could be wrong, but one thing is clear, the only study or case history treatment I know of (after getting rid of the erection), is the 3 component PAV combination that you are using. 

I think anything impacting Peyronies Disease will have a similar impact on deformity set in motion by priapism.
Title: Ramblings
Post by: Liam on May 17, 2007, 07:34:19 AM
I should explain my line of thinking.  I must admit it is convoluted.  By understanding, at a basic level, what happens during the resolution of a similar condition, I was hoping to gain insight into the opposite process in our loathsome malady.

Sounds bizarre.  Next time I'll post under the Psychological Issues topic  ;)

The other posts in Alternative Treatments referring to the Leriche Technique allowed me to see the parallels to MUA for adhesive capsulitis. This caused me to do some backward thinking.  I am not sure it has led me anywhere.  It is a nice mental "jog around the park", though.  (Is that a euphemism for running in circles?)

Hawk,  Maybe I need an "I'll get to the point one day" topic  :)

Sorry Guys!  And, I thought The Who post would take the hit.  :D
Title: priapism and peyronies
Post by: Tim468 on May 17, 2007, 10:17:12 AM
Priapism results (sometimes) in fibrosis of the penis, including the corpora cavernosa, whereas Peyronies is limited to the tunica and the midline connective tissue. However, I think the initial site of injury may be different, but the mechanisms of injury and repair (leading to excessive fibrosis) are the same or similar.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Helios on June 12, 2007, 03:16:50 PM
Hello,
I am a 32 year old healthy male that is a new member to this forum. I have never been diagnosed with Peyronies, though I suspect that I have the condition. I have a Dupuytren's contracture on my right hand, which has developed over the last few years, but has never developed beyond a bump. My penis curves downward, though not to either the left or the right, only down and there are no palpable plaque deposits. It had been like this as long as I can remember, I do not recall any trauma, it is not painful and the only hindrance has been that it makes some sexual positions difficult. In my experience over the years with various sexual partners, they have all seemed to like the curvature. I do not suffer from ED and my girlfriend of several years appears happy with my shape and size. I know that there have been some reported connections between Peyronies Disease and Dupuytrens,and I guess that I am confused as to whether it's Peyronies Disease that I have or just a weak ligament? Does anybody have any success stories treatment-wise they may want to share; I am surgery adverse. I have heard taking Vitamin E may help, though no studies seem to substantiate and that Collagenase may prove to be beneficial? Also, what is the likelihood of Peyronies Disease worsening over time...i.e. further curvature? Thank you.
Title: Re: Helios - Peyronies or Congenital Curve
Post by: Hawk on June 12, 2007, 07:20:14 PM
Welcome to the PDS Helios.

You are correct that there is a strong connection between Dupuytrens and Peyronies Disease however you state that your curve has existed as long as you can remember.  That is a very strong indicator that is is not Peyronies Disease.  You currently have no palpable plaque, pain, no history of trauma, no history of a rapidly developing deformity or loss of size.  You have no ED.  In conclusion, you have no symptom of Peyronies Disease.

If your curve existed in puberty, it is surely a congenital condition and not a progressive disease that can be treated short of surgically modifying the shape.  With your functional status, you would be ill advised to pursue a surgical route. 

Enjoy the normal yet unique features that make you an individual.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: bigdaddy on July 10, 2007, 01:32:59 AM
My husband has this problem for 3 years it has taken a great deal out of him. Can any one suggest something to say . I dont complain .I just tell him it doesnt matter how we get there as long as we both are happy. But it still bothers him. I would guess you fellows understand :-\
Title: Re: Big Daddy
Post by: Liam on July 10, 2007, 09:07:38 AM
You are saying and doing the right thing.  My wife has the same approach.

It still bothers me.  Here is a thought I bet most married men with Peyronies Disease have had.  My wife could go out and find another man and I will be alone for the rest of my life.  Another woman would never want me with this.  Why does my wife still want me?  I am damaged goods.  I can rationalize it all I want.  The fact is I will never totally get over this emotionally.  The best I can do is cope, which I do very well.  I have good days and bad days.  The fact my wife is there, doing nothing special, saying nothing special is the best support there is.

Two specific things I can say are:

1) Let your husband know when he has done something to please you (even if he already knows).  Its a HUGE boost.  Not just sexually either.  Feeling needed (not just wanted) is SO important.

2) If he complains or "gets down in the mouth" about his situation, thats OK.  Change the subject or the situation.  Men (speaking for myself) don't always want to "talk about it".  Adding to the "drama" only makes things worse.

These are a couple of specifics from my perspective.  We are all different.  You are going through this condition, too, though.  I have had to communicate to my wife and she with me even more than healthy married couples (which we are) normally do.  I hope you are in the ladies group, also.

I like the way you said, "it doesn't matter how we get there as long as we both are happy".  That goes a long way.

This probably should be under psychological aspects topic and I may move these two post later.  I just wanted to make sure you got the response.


Liam
Title: Re: Big Daddy
Post by: j on July 10, 2007, 10:05:42 PM
What Liam said.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: MUSICMAN on July 26, 2007, 12:54:27 PM
So much information to read and try to understand.  It seems that I understand that even if the plaque
reduces or disappears the curve still remains. Am I right on this? If drugs like Verapamil are to reduce
plaque but you still have the curve what is the point?

So the hard question is what is the best option to remove the bend?
Title: Re:Musicman - Does plaque = bend?
Post by: Hawk on July 26, 2007, 01:36:29 PM
Musicman

You are correct.  it is a lot to research and understand.  Let me be blunt, direct, and cynical for a moment.  There is no good answer to your question because we all have our preferred alternative or non-traditional treatments.  Further, no two doctors have the same view because no one has ever cured and no one can cure Peyronies Disease.

Some cases improve on their own (clearly less than 15%).  Some stabilize (maybe 50%).  Many steadily progress or progress in a series of active stages separated by periods of seeming stability.

Plaque which is not definably different than aggressive scar tissue is the only cause of a bend.  If it goes away the bend goes away.  Keep in mind however that just because it cannot be felt with the finger does not mean no plaque is present.  Also, plaque often reduces in size as it matures but that often only means it is not as plump or raised.  It may even mean that it is contracting more and increasing its impact.

This is not to discourage you but to lay the facts on the table.  This forum is made up of 10,000 posts.   Probably a majority of them deal with aspects of what patients think is the best treatment to promote stabilization or improvement.  The only real way to answer your question would be to repeat those posts or suggest you go to the "Newly Diagnosed Highlights" from the forums home page and begin to become a student of your condition..

Regards


Hawk
Title: Re: Does plaque = bend ... Another perspective ...
Post by: George999 on July 26, 2007, 06:25:45 PM
I really think that one thing that confuses a lot of people is the tossing around of terms like "plaque" and "scar tissue".  Even the professions can't seem to agree on the precise definition of these terms.  The rest of us get mighty confused sometimes in the process.

But if I can eliminate these terms and try to be more descriptive.  Peyronies makes its presence known by both "lumps" and "deformity".  Lumps occur when there is an almost tumor like process going on that results in an accumulation of collagen.  These lumps, in and of themselves, though abnormal and definitely not desirable, are not the cause of the deformities although they may or may not coexist with the deformities.  The deformities are actually caused by another process.  This is the process whereby collagen and fibrin displace elastin in the tissues.  Thus a person can have a significant sized "plaque" and exhibit little or no deformity as long as the localized tissue retains sufficient elastin.  On the other hand, there may be no lump at all, but if the tissue is depleted of elastin, there will be deformity.  In some cases, both conditions are concurrent.  When you treat such a condition with the objective of getting rid of collagen, the result will be that the lump will disappear, but since the remaining tissue is elastin deficient, it still refuses to stretch, which results in the deformity remaining.  This is one huge problem I see with the collagenase approach.  If whatever strategy proposed does not take into account the rejuvenation of elastin, it will be of no use in eliminating deformity.

- George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: voulezvous on July 27, 2007, 10:17:12 AM
Very interesting & informative posting, George. Thanks for the clarity.

I guess the obvious question for those of us with deformity is "what helps to restore elastin?"

It sounds as if your are saying that all the stretching & pumping in the world won't restore what has occured.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: George999 on July 27, 2007, 12:35:44 PM
Quote from: voulezvous on July 27, 2007, 10:17:12 AM
It sounds as if your are saying that all the stretching & pumping in the world won't restore what has occured.

I'm really not saying that at all.  In fact, I suspect that RESPONSIBLE use of a VED and/or plenty of normal healthy erections may well help improve elastin levels.  Also, Pentoxifylline has shown some ability to apparently restore elastin levels.  We who have this dread disease tend to be far too pessimistic.  We are closer to a cure than we can even imagine.  But, the fact that it can be so psychologically debilitating coupled with the fact that the experts tend to be so discouraging in their assessments doesn't make for a lot of optimism.  But we shouldn't allow that to drive us to despair.  There ARE treatments that work, at least in part, and a real solution is close at hand.

One of the major frustrations, of course, is the fact that it sometimes seems easier to correct 'plaques' that are palpable, than it is to correct deformities that seemingly occur for no apparent reason, as in, "I got rid of the plaques ... but".  Thus the real gold standard for many around here is dealing with the deformities, not in getting rid of or shrinking palpable plaques.  And, of course, another issue around here seems to be that the plaques themselves seem to be dynamic, growing and shrinking for no apparent reasons, making us feel like we are 'improving' when we may in fact be going the opposite direction and causing depression when in reality we are really not getting any worse.  So palpable plaques tend to be a canard of sorts.  The REAL issue is "Is the DEFORMITY getting worse or better".  And the fact is that most if not all of us have seen no meaningful and enduring improvement at the deformity level EXCEPT what can be traced to an ongoing continuing therapeutic effort .  That is the frustration you are seeing here.  But again, my suspicion is that a real solution is just around the corner.

At this point, I really suspect that the whole elastin issue is entangled with glucose metabolism.  I would conjecture that elastin likely requires more energy at the cellular level than other types of tissue (and even more energy when subjected to trauma) and is thus the first to go when glucose metabolism heads south.  I am not a doctor or a medical professional, so these are ONLY my conjectures, but this is the theory I am currently pursuing.  Fibrosis is only the tip of the proverbial iceburg.  There is something a whole lot bigger and more fundamental going wrong under the surface.  For me, a prime candidate is faulty glucose metabolism.  I think it no coincidence that Peyronies disease is becoming rampant at the same time that metabolic syndrome is so epidemic that it is even being diagnosed in pre-teens.  An additional clue is the fact that Peyronies outcomes for diabetics have been shown to be much worse than the outcomes experienced by non-diabetics.  So I think the bigger picture is to address possible insulin resistance factors.  Fibrosis (which is what causes elastin deficiency) encompasses a whole range of maladies, Peyronies is only one of those.  So right now, I am looking really hard at these external factors on a personal level, like getting refined sugars out of my diet as much as possible in favor of complex sugars like that found in fruit, like making sure I a getting a lot of important co-factors like grapefruit, cinnamon, inulin, etc.  Paying close attention to things like glycemic index rating.  I am also investigating other ways of addressing insulin resistance through the use of supplements.  This is the approach I am taking at this point.  It may all end up being just another rabbit trail.  Who knows?  I am not afraid to be wrong, but I am afraid of passing over opportunities.  I think it needs to be investigated and I am not the type to wait for someone else to do it.  I wish you the very best!  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Hawk on July 27, 2007, 08:29:10 PM

Quote from: George999 on July 26, 2007, 06:25:45 PM
I really think that one thing that confuses a lot of people is the tossing around of terms like "plaque" and "scar tissue"....

Lumps occur when there is an almost tumor like process going on that results in an accumulation of collagen.  These lumps, in and of themselves, though abnormal and definitely not desirable, are not the cause of the deformities although they may or may not coexist with the deformities.  The deformities are actually caused by another process.  This is the process whereby collagen and fibrin displace elastin in the tissues.  Thus a person can have a significant sized "plaque" and exhibit little or no deformity as long as the localized tissue retains sufficient elastin.  On the other hand, there may be no lump at all, but if the tissue is depleted of elastin, there will be deformity.  In some cases, both conditions are concurrent.  When you treat such a condition with the objective of getting rid of collagen, the result will be that the lump will disappear, but since the remaining tissue is elastin deficient, it still refuses to stretch, which results in the deformity remaining.  This is one huge problem I see with the collagenase approach.  If whatever strategy proposed does not take into account the rejuvenation of elastin, it will be of no use in eliminating deformity.

- George

George,

I speak as a member whose personal nature is to always look for holes in bold absolute statements unless they are supported with facts on a point by point basis.  I have to wonder what a Peyronies Disease specialist or researcher might think when reading your explanation.   I suspect they may chuckle to themselves and that they may be able to shoot holes in many of the individual statements.  The problem is that you are intelligent and articulate enough to convince many people that your use of collagen vs elastin, or your dividing up the processes as two separate processes, are proper.  While this may be a working description to make a point, I doubt these are an accurate description of Peyronies Disease.  It is my opinion that if we strictly accepted some of these points we would find ourselves having to unexplain them down the road.  We of course have no way to research these ideas.  We can not even produce theories but are forced to speculate with fragmented evidence. 

Your posts are usually cautiously sprinkled with warnings of: "personal opinion" and other disclaimers but many people probably still suspect you may have more facts to support these theories that you do have.  It is clear that some take this information, ask not one question, and await further advice on how to act based on this information.  Speaking as one member, I certainly do not want to see such well thought out expression suppressed, but I do want to keep it from going unquestioned.  Your understanding certainly varies from mine.

Somewhat aside from this, you have the ability to work on an in-depth post about your understanding of Peyronies Disease complete with documenting the basis for your understanding.  If you ever decide to undertake such a project I am sure it would find a topic on the forum for full discussion. ;)


Discussion continued at
Quote from: Hawk on July 27, 2007, 05:40:27 PM
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: wasa on August 09, 2007, 03:11:53 PM
I don't know if I asked this before, but I have been working out with weights again, and for some reason, when I work out intensively (especially with barbell curls, etc) and I seem to be "gasping" for air, it somehow seems to affect my penis, as it feels a bit "painful" (not even the proper, just a bit uncomfortable). I also noticed that all of a sudden since the last 2 weeks the upward bent in my erect penis has gone up a bit more, the degree has worsened a bit in other words. I think it must have something to do with the "depletion" of oxygen, and the problem with the bent of the penis has got to be related with improper blood/oxygen supply (due to narrowed veins,... ? ) . I just found it peculiar, especially since I noticed the exact same thing when I worked out for a few months last year.

Any thoughts on this?



Title: Re: Wasa - Weight lifting causing discomfort or progression of Peyronies Disease
Post by: Hawk on August 09, 2007, 06:03:07 PM
Wasa,

I only feel safe making a couple general remarks about your observation.

First, whatever oxygen you temporarily deplete from most any form of exercise, you actually have an increased capacity for oxygen utilization the other 23 hours of your day.  Also, even in world champions, biceps are so small in relationship to the body that curls could never likely cause a real oxygen drop in the body.  Possibly large muscle groups like back/hips/quads (such as squats) could, but again, over all, there is no reason to think it would not improve your circulation and oxygen carrying capacity.

I can also report that I do not recall any of our other ten thousand posts mentioning such an observation other than a previous post that I remember you making on this subject.  That does not mean you don't feel anything in your penis.  You could have pressure from a slight hernia pressing down, or just a hike in blood pressure, or numerous other known and unknown events taking place, but I doubt if it has anything to do with oxygen depletion and I also doubt if it is connected to the progression of your Peyronies Disease.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on August 09, 2007, 07:16:43 PM
Wasa,

I mostly agree with Hawk, but I might temper that a bit to say that I cannot figure out a mechanism by which your exercise makes your Peyronie's Disease worse. It is possible, though, that *something* is different. I would look at everything - not just the exercise itself. What do you wear? Do you eat differently? Are you motivated to exercise because of some specific factor? For instance, you could decide to exercise because you are feeling it is a good way to respond to stress, and the stress is the thing making your Peyronies Disease worse (just an example of what I mean - I am not suggesting this is true for you).

This is the problem with Peyronies. We are so often in the dark. I have learned over the years that mine gets worse at odd times, for reasons I cannot fathom. I am more aware of some things in my life that seem to make it worse (for me, coffee, and high levels of stress).

Tim
Title: Re: Symptoms and Depression
Post by: Liam on August 09, 2007, 07:43:00 PM
WASA, I think you worry about your penis (understandably) and have anxiety and/or depression.  These will make you misinterpret "symptoms".  Both are as real of a disease as Peyronies Disease or any other disease.  You may have something going own like Tim suggests.  But, what you describe is strange.  Ask your doctor about my suggestion of depression/anxiety and how it relates to your symtoms.  Maybe I'm wrong.  I think it is worth checking into, though.

Good luck to you,

Liam
Title: Re: Question on Injection for an Appointment
Post by: Mew on August 09, 2007, 11:31:24 PM
Hello all,

I have been experiencing erectile dysfunction and penile shrinkage/curvature/twisting/tissue changes since I took Finasteride 20 months ago.

I am scheduled for a Doppler Ultrasound in September and wanted to ask about the injection... I would rather take Viagra to avoid any trauma to my penis (is this common?) ... so was wondering if people who have undergone a Doppler injection have experienced more fibrosis as a result of the injections they use to measure blood flow?

I really don't want to have a needle inserted in my dick if I can help it.


My history
-----------
I will try to be brief: I'm 28, I took Finasteride (Propecia/Proscar 5mg) 20 months ago at 1.25/mg a day for hairloss, for 11 months.

I experienced many sexual, physical and mental side effects while on the drug to the point where I had no choice but to quit. It was very difficult to get erections without a lot of physical stimulation, most of the time it would end up a wet noodle and I would quickly lose it after penetration.

Since quitting a number of these side effects have not resolved. These include:

- penile/scrotum shrinkage, loss of length/girth
- loss of morning/spontaneous/nocturnal erections
- empty/wrinkly scrotum
- penis constantly retreating as if in a cold pool
- no libido
- loss of sensation/numbness to both penis shaft and scrotum, both feel lifeless/not pleasureable
- penile tissue changes: narrowing, curvature, darkening, emergence of numerous varicose veins along shaft
- ongoing erectile dysfunction

I have had blood tests over the past 20 months, when I first came off my Total Testosterone was low-normal (12.8, range: 8.4-28.8).

It has since climbed up to 17.3, but my LH and FSH remain borderline low. A lot of other guys with these problems from Finasteride have ended up with similar hormonal profiles (Secondary Hypogonadism) and it seems to be a common thread for us, as well as a connection to Peyronie's disease from lack of DHT thanks to the drug.

I am getting tested for a doppler in September to check bloodflow and don't want to create anymore fibrosis issues for my penis by getting injected, hence my initial question at the top of this post... but if anyone has anymore insight into the FInasteride/low DHT/hormones/low Nitric Oxide connection, please let me know.

There are many of us over at http://www.propeciahelp.com that are suffering thanks to this dangerous drug.

I plan on starting L-Arginine shortly at the very least, I NEED my Nocturnal erections back... but I feel I am only treating the symptoms, not the root cause of all this as Finasteride decimated my Testosterone production... need to find a doctor that can help bring it back up without going on TRT. Anyway...

Many thanks for your help in advance, this site is truly a godsend.

Mew.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: wasa on August 10, 2007, 06:59:41 AM
Actually, Mew's post came just at the right time. I too had taken Finasteride for 2.5-3 years. It's been 3,5 years now since I've been off the drug. I had no erectyle disfunction or anything during taking Finasteride , but I think due to depleting DHT levels it affects the elasticity of your penis. There was a scientific article on which it's effect (compared to normal and castrate rats) on penile tissue structure was observed, with suprising conclusion about the role of DHT on penile tissue. So I believe taking Finasteride just makes you more prone to getting Peyronie's, I had a very small bruise on the base of my penis, and since then it has gone all wrong.

Mew, I experience these symptoms in particular aswell:

- penis constantly retreating as if in a cold pool
- loss of sensation/numbness to both penis shaft and scrotum, both feel lifeless/not pleasureable
- penile tissue changes: narrowing, curvature, darkening, emergence of numerous varicose veins along shaft


The retreating is actually the best way to describe what I experience when I work out with weights. That's the feeling I get after an intensive exercise. I don't really have depression or anxiety about my problem, I've come to terms with it in some way, although I do am thinking about suing Merck for all the different consequences I had with taking that drug. The fact that 3 doctors don't really find plaques on a flaccid penis is in my humble opinion by no means an indication that something isn't wrong, I think I'm not yet "that" far into the progression, although it has worsened slowly. For some reason the narrowing and shortening occur especially during the spring/summer months, I take Acetyl-L-Carnitine 1.5 gr per day, which seems to help in some slight way with increasing blood flow and making the erect penis somehow "fuller". ALC seems to slow down the narrowing (I  noticed it when flaccid on one side) . As I said the curve has worsened and working out does seem to worsen this, however what I find most agonizing is the hardening of practically the whole shaft now (it used to be only at the base last year) and especially the shortening & narrowing. I think I've already lost about 2cm in length, and perhaps more in girth. 
The doctor's cant feel plaques, but when erect I now do see small, transparent white horizontal lines over the base of the penis, going upwards. Again, I read a few large studies about Peyronie in which it stated that usually Peyronie's can be figured out by palpation, except when the problem originates at the base of the penis, then MRI is the preferred form of diagnosis. The doctor's here only did one ultrasound last year, in which they didn't find anything. They don't do any more tests (I had to plea for ultrasound), as in their opinion nothing can be done about Peyronie anyways, so what's the use of diagnosing it. (in my opinion a horrible justification of their apathy and ignorance). Mew, injection didn't worsen my condition in any way.

Btw, of the four doctors I visited, 2 were young assistants of that "top" specialist, and I think once they put the results in their database they just conclude from those observations whenever I make a new appointment. Again apathy and laziness.

But to conlcude, Mew, I have the exact same symptoms: the narrowing, shortening, the completely different "look" of my penis now compared to three years back, full of varicose veins and lately little "bumps" on the sides of the shaft, the curvature upwards...  It could be it's not Peyronie's, this is the one thing I could agree with the specialist, he said "what is Peyronie? it could be under many forms, some people have at an early age arthritis, you could have at an earlier age plaques that build up in the veins of your penis." He did say that Finasteride could have been responsible, but it was impossible to conclude now, maybe in 10 years it would be common understanding..




 
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: wasa on August 10, 2007, 07:27:21 AM
And Mew, about the Testosterone. During the years I took finasteride, I hadn't done any blood tests. However I did feel less alert/agressive at those times. I think the problem is more in the higher estrogen to testosterone ratio (which is why people at older age are more prone to seksual dysfunctions), but it surprises me that Estrogen (estradiol) seems to be always in the "normal" range when people who are taking Finasteride do blood tests.

I do feel a remarkable difference between then and now in my alertness, which is due to testosterone/DHT. It was already better last year, but since the first months of 2007 I really feel the hormones "pumping" through my veins at times, so to speak. I did a full blood test three months ago, and everything was normal except for my testosterone level, which was at the very upper range at 780 ng/dl (500 ng/dl is the average)  or 27.3 nmol/L . It's like my body is experiencing a "catch-up effect", as my beard is growing very fast, also a lot of new hair growth on my legs, abdomen, chest, etc..

It's a sad thing that doctors have no scrupules about prescribing an anti-androgen to someone in his late-teens for something as trivial as hair loss (which in my case wasn't even MPB!) , but do have problems with prescribing newer treatments for something as agonizing as peyronie's.

So your Testosterone levels might slowly regain their normal ranges, in my case it took almost 3 full years, since mid 2007 it seems to have stabilised for me at the upper ranges, and I'm glad atleast I got that back.

Title: Re: MEW
Post by: Liam on August 10, 2007, 07:32:57 AM
MEW,

See my post "Think before you stick" under the ED topic.  I would not hesitate for 1 injection.  Multiple injections are a different story.

Quoteas well as a connection to Peyronie's disease from lack of DHT thanks to the drug.

Do you have any resources related to this?

WASA,

QuoteIt could be it's not Peyronie's, this is the one thing I could agree with the specialist, he said "what is Peyronie? it could be under many forms, some people have at an early age arthritis, you could have at an earlier age plaques that build up in the veins of your penis." He did say that Finasteride could have been responsible, but it was impossible to conclude now, maybe in 10 years it would be common understanding..

I feel pretty safe saying arthritis and plaques in your veins have nothing to do with Peyronies Disease directly.  For >99.9% of men diagnosed with Peyronies Disease, there is no doubt in their mind they have it.  It is overwhemingly obvious even in mild cases.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: MUSICMAN on August 10, 2007, 04:34:21 PM
Well I went for my appt. with the urologist that is to be one of the top doctors dealing with peyronies in my area. I have seen others but wanted to get the best advice. He said that as to  my severity of the disease use of pentox, vet or the like would be a waste of time, with little or no results. The only option is surgery. He said the plication surgery would not do enough only the one with the graft. I have no idea of what this would cost  but since I don't have a $5.00 deductable insurance policy I guess I'm out of options. Now to try and live the rest of my life as a less than.


Edited format to make post screen width
Hawk
Title: Musicman
Post by: Angus on August 10, 2007, 06:11:25 PM

   Musicman... hold on a minute here. He said "...according to severity of the disease..." that only surgery will work. Exactly how severe is it? Can you estimate your degree of curve? If you can scrounge a 20 dollar bill you can make your own VED without a barn full of tools. How to make them and how to use them is all here on the board. And there are many other things that you can do without living under a money tree. Now, some other guys are going to chime in here with thoughts, but IMHO this doc sounds like he the top doc at selling surgeries right off the bat. And you're not going to live your life as a less than. The Enzyte commercials on tv try to drum this bigger is better garbage into the public but don't buy it. Empowerment for a man doesn't come from below the belt. Now, lets get to work... if you will, tell us something about your condition, curve angle and so on.
Title: Re: Mew - Injection for an appointment
Post by: Hawk on August 10, 2007, 06:58:30 PM
Mew,

Welcome. 

The topic of injection for an examination was just discussed.  Go to the "General Comment" topic and start reading at post #625
Quote from: ThisSux on July 25, 2007, 12:13:45 PMI am a bit paranoid about the injection used to induce an erection. Can anyone explain to me why it is not a bad idea for someone with Peyronies to add yet another injury to their penis?   When I asked Dr Mulhall about this when i saw him last, he sort of chuckled and said that it was a very small needle and I didn't need to worry about it...

I asked his nurse if Viagra could be used instead (something I read about other Urologists doing) but was told that Mulhall only uses the injections.
at post #627 I reply and there is some later exchange on the topic.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: MUSICMAN on August 10, 2007, 08:03:04 PM
Well Angus here is the reply. At 59 after 35 years of good marrage and a good love life, two years ago I developed the peyronies. First urologist said take your vit E and see me in 90 days. Pain went away over time and next visit he informed me that most meds don't work. Since surgery usually brings ED ( got that most of the time anyway ) he does not like to recommend it. Kept taking the vit E but thats all. Since the
ED kept things from working time passed.  Six months ago I saw a different urologist and his question to me was what surgery do you want the plication or the graft procedure.? Now with one urologist with no  surgery and the other promotes it I needed another opinion. Checking around I talked to this doctor. He
said that he has options other than surgery. He comes highly recommended as a professional in peyronies. Well I made a appt. and went to see him.

As I have 80 to 90 deg. bend to the left things don't work too well. I would also need something for the ED to maintain a erection, but then at 90 deg. what's the point?

Edited format to make post screen width
Hawk
Title: Welcome Mew
Post by: Tim468 on August 10, 2007, 10:34:42 PM
Mew - welcome to the site. The propecia help site is very well laid out and informative. It is clear that thinking is along the same lines. It also helps me to understand why my lower than average testosterone levels may be affecting the rapidity of advancement of Peyronie's Disease.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Mew on August 10, 2007, 11:20:52 PM
All,

First, thanks for the kind words and information. I hope for those of you affected by Finasteride, that you will find www.propeciahelp.com helpful. Perhaps we can have some cross-over from members of this board that would like to share their advice on natural/other treatments for Peyronie's with the members of propeciahelp.com, since many of us ex-Finasteride users are suffering similar problems "downstairs". Just a thought...

-----------

Regarding my initial question about the doppler needle test leading to further fibrosis issues: I left a message with the Urologist requesting I be able to take Viagra, we will see what he says. I will need to give this much thought if he says no and that I MUST have the injection.

I spoke with another member of propeciahelp.com who underwent a doppler injection of Trimix and in fact ended up having a Priapism which required 14 injections to bring down... I do not want this to happen to me. So if in the end I decide the risk isn't worth it, I will just cancel the appointment, but I won't have any answers as to my penile blood flow/possible fibrosis issues that way either...

-------------
QuoteSo your Testosterone levels might slowly regain their normal ranges, in my case it took almost 3 full years, since mid 2007 it seems to have stabilised for me at the upper ranges, and I'm glad atleast I got that back.

WASA: thanks for your insights about your experiences with Finasteride and the doppler. You should consider yourself lucky that your Testosterone levels came back up!!! Many of us ex-Fin users after taking the drug found our T levels crashed and remained in the toilet, and have yet to recover to "normal" levels for our age.

Right now I have the hormonal profile of a 60 year old man, as do many others that have suffered early andropause as a result of Finasteride use. I hope things will climb further but am considering seeing a top endocrinologist in the US to try treatment to "jumpstart" my Hypothalamus Pituitary Axis into producing more T. For us Propecia sufferers, it seems lack of DHT while on the drug can lead to penile shrinkage/fibrosis/curvature etc... which is then further compounded when some of us end up wth low T after coming off.

----------
QuoteQuote
...as well as a connection to Peyronie's disease from lack of DHT thanks to the drug.

Do you have any resources related to this?

LIAM: There are a number of studies in the "Finasteride Studies" and "Other Studies" sections of propeciahelp.com that show that normal levels of Testosterone and DHT are required for proper genital tissue structure/sexual function.

For example:

Effect of androgen deprivation on penile ultrastructure (rat study)
http://www.asiaandro.com/1008-682X/5/33.htm
^^^^ Look at the photos for further proof of what can happen to penile tissues when you block DHT with FINASTERIDE. Obviously this is a RAT model but its not far fetched to believe such things occur in humans... as I have found out myself.


Effects of Medical or Surgical Castration on Erectile Function in an Animal Model (rabbit study)
http://www.andrologyjournal.org/cgi/reprint/24/3/381.pdf
^^ same thing here, rabbits experienced tissue changes/ED when androgens reduced... and big surprise... restoring T/DHT (androgens) corrects tissues/ED

Restorative Increases in Serum Testosterone Levels Are Significantly Correlated to Improvements in Sexual Functioning (human study)
http://www.andrologyjournal.org/cgi/reprint/25/6/963.pdf
^^^ yet again... restoring T/DHT (androgens) corrects ED issues

Recent insights into androgen action on the anatomical and physiological substrate of penile erection (human study)
http://www.asiaandro.com/1008-682X/8/3.htm
^^^ more proof that androgens are necessary for proper sexual function in men

The Effects of Transdermal Dihydrotestosterone in the Aging Male: A Prospective, Randomized, Double Blind Study (human study)
http://jcem.endojournals.org/cgi/reprint/87/4/1467.pdf
^^^ take away DHT, you lose sexual function/libido --- restore it, you recover function

Dihydrotestosterone is the active androgen in the maintenance of nitric oxide-mediated penile erection in the rat
http://endo.endojournals.org/cgi/reprint/136/4/1495.pdf
^^^ DHT is necessary for NOS production so you can get an erection

Effects of androgens on the expression of nitric oxide synthase mRNAs in rat corpus cavernosum
http://www.blackwell-synergy.com/doi/full/10.1046/j.1464-410x.1999.00913.x
^^^ same thing here.

Dr Irwin Goldstein corroborates the fact that androgen replacement can reverse penile tissue fibrosis in humans, and that lack of androgens cause progressive fibrosis via collagen deposits
http://finasteride.jconserv.net/viewtopic.php?t=346

Androgens critical for Penile Erections in Humans
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1743-6109.2006.00245.x

Androgen and estrogen receptors in the human penis
http://www.springerlink.com/content/f517xh1nj337hf6b/

The effects of testosterone on the cavernous tissue and erectile function
http://www.springerlink.com/content/j85w526u381206g1/

Penile apoptosis in association with p53 under lack of testosterone
http://www.springerlink.com/content/cqpq96aydaaj3e1t/

Restorative Increases in Serum Testosterone Levels Are Significantly Correlated to Improvements in Sexual Functioning
http://www.andrologyjournal.org/cgi/reprint/25/6/963.pdf
^^ note the bit about nocturnal erections

So, for those of you who have not gotten bloodtests done for Testosterone, Free/Bioavailable Testosterone, DHT, LH, FSH, Prolactin, Estradiol, Cortisol and others... I advise you to do so as your androgens (or lack thereof) may also be a contributing factor to the Peyronie's, especially if you have low T.

Anyway, hope we can share further information and treatments to help us through these dark days.

Thanks,

Mew.

Administrator,
www.propeciahelp.com

Title: Re: Testosterone ...
Post by: George999 on August 10, 2007, 11:24:51 PM
Anyone ever consider the idea that if one followed the trail of low testosterone, it might lead right back to excessive serum glucose levels and insulin sensitivity problems?  And that THAT might be what is fueling Peyronies?  There is a lot of speculation about using Testosterone therapy to combat Metabolic Syndrome.  I wonder if anyone has ever considered combating Metabolic Syndrome in an effort to normalize Testosterone?

Quote from: DiabetesCarehttp://care.diabetesjournals.org/cgi/content/full/29/3/749?ijkey=e392e22c7f21b9d91f5bc8e057a24b35f12964d9&keytype2=tf_ipsecsha

Quote from: Medical News Todayhttp://www.medicalnewstoday.com/articles/24895.php

Quote from: The Aging Male 2004http://www.agingmale2004.com/transcript-Arver.htm

Quote from: The Aging Male 2006http://www.agingmale2006.com/abstracts/abs_epidemiology_testosterone_metabolic.asp
Title: DHT and Peyronies Disease
Post by: Liam on August 11, 2007, 12:35:53 AM
While interesting, I did not see any evidence low DHT levels caused Peyronies Disease.  The studies dealt with castrated mice who, depending on the study, had increased collagen fibers or fibrosis.  Androgen therapy reversed the fibrosis.  I mean there is some connection with the fibrosis.  I just can't find a direct connection between DHT levels and Peyronies Disease.  Has any researcher studied this possible connection directly?


QuoteSince quitting a number of these side effects have not resolved. These include:

- penile/scrotum shrinkage, loss of length/girth
- loss of morning/spontaneous/nocturnal erections
- empty/wrinkly scrotum
- penis constantly retreating as if in a cold pool
- no libido
- loss of sensation/numbness to both penis shaft and scrotum, both feel lifeless/not pleasureable
- penile tissue changes: narrowing, curvature, darkening, emergence of numerous varicose veins along shaft
- ongoing erectile dysfunction

I have seen many of these symptoms listed before by members with unsure cases of Peyronies Disease.  One that comes to mind was "soggy testicles".  At first, I got a chuckle.  But, now I have seen several people post this in similar language (sounds the same to me).  I mean..you know...describe something as amorphic as your testicles in an unusual state.  Soggy/wrinkly works for me.  There may be a connection.  Maybe some of these guys can get their DHT levels checked.

Thanks for the interesting links!

The bald and beautiful,

Liam
Title: Re: DHT and Peyronies Disease
Post by: wasa on August 11, 2007, 08:19:29 AM
I don't think Finasteride causes Peyronies Disease, it just increases the chances of getting Peyronies Disease due to trauma due to making the fibers in the penis less elastic (collagen). In my case it was very minor trauma, about half a year after quitting Finasteride.

Liam, about the link I made of arthritis, what I was trying to say was that the urologist meant that just as there are varying forms of arthritis (from mild to severe) between people, there could be varying forms of Peyronies Disease. Mine could be rather mild for now, I doubt I don't have Peyronies Disease, it has all the symptoms, but it's frustrating that my urologist just assumes that just because he can't feel calcification or see plaques, there is no Peyronies Disease. He thinks it's a build-up of small plaque desposits in the veins of the penis, which is common with older age, which result in curvature etc. However it doesn't really explain the narrowing/shortening/hardening.

Here's the article about the usefullness of MRI and Peyronies Disease at the penile base. http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12600434&dopt=AbstractPlus  . Conclusion: Penile palpation in combination with ultrasound represents the method of choice to diagnose plaque formation in Peyronie's disease. MRI provides better information on plaque formation at the penile basis. Calcification can only be proven by ultrasound, not by MRI.

Here's another useful article: http://www.springerlink.com/content/ukp6614284862302/

I think if I go for another consultation, I'll take these documents with me. However, I do think my next visit will be to someone such as Dr. Levine or Dr. Lue, as I'm tired of dealing with urologists who show not an ounce of interest in a patient's story or diagnosing/fixing the underlying problem. The first may match the attitude of Dr. House Liam, the second doesn't ;)




Quote from: Liam on August 11, 2007, 12:35:53 AM
While interesting, I did not see any evidence low DHT levels caused Peyronies Disease.  The studies dealt with castrated mice who, depending on the study, had increased collagen fibers or fibrosis.  Androgen therapy reversed the fibrosis.  I mean there is some connection with the fibrosis.  I just can't find a direct connection between DHT levels and Peyronies Disease.  Has any researcher studied this possible connection directly?


QuoteSince quitting a number of these side effects have not resolved. These include:

- penile/scrotum shrinkage, loss of length/girth
- loss of morning/spontaneous/nocturnal erections
- empty/wrinkly scrotum
- penis constantly retreating as if in a cold pool
- no libido
- loss of sensation/numbness to both penis shaft and scrotum, both feel lifeless/not pleasureable
- penile tissue changes: narrowing, curvature, darkening, emergence of numerous varicose veins along shaft
- ongoing erectile dysfunction

I have seen many of these symptoms listed before by members with unsure cases of Peyronies Disease.  One that comes to mind was "soggy testicles".  At first, I got a chuckle.  But, now I have seen several people post this in similar language (sounds the same to me).  I mean..you know...describe something as amorphic as your testicles in an unusual state.  Soggy/wrinkly works for me.  There may be a connection.  Maybe some of these guys can get their DHT levels checked.

Thanks for the interesting links!

The bald and beautiful,

Liam

Title: Androgens and Viagra (or PDE5 inhibitors)
Post by: Tim468 on August 11, 2007, 09:12:23 AM
Some thoughts:

The study cited...
>>Effects of Medical or Surgical Castration on Erectile Function in an Animal Model (rabbit study)
http://www.andrologyjournal.org/cgi/reprint/24/3/381.pdf
^^ same thing here, rabbits experienced tissue changes/ED when androgens reduced... and big surprise... restoring T/DHT (androgens) corrects tissues/ED<<

I don't see evidence that they studied the effects of giving androgens and corrected it, but interestingly, giving PDE5 inhibitors did nothing to increase blood pressure to the penis (which is what they measured as an end point).

This suggests that the effect of androgen loss on ED is not easily fixed by drugs like Viagra. Is that the story that men with ED in association with Finasteride use report?

Giving testosterone or upstream androgens can fix ED if the problem is low T levels. What is intriguing is the connection of low T levels to fibrotic changes in the penis ultrastructure. Their hypothesis is that the changes in structure lead to alterations in the ability of the tunica to seal off venules during erection and that it does not respond to PDE5 inhibition for that reason.

thanks for the links

George - outstanding links. When taken into consideration with testosterone levels and the effects men given Finasteride report, I think there almost has to be a connection. The Swedish researcher seems to think that it is tha accumulation of abdominal fat that leads to the higher metabolic syndrome risk. That might be true, but the whole role of glucose metabolism in T function is intriguing.

Tim
Title: Re: Plaque in Veins
Post by: Liam on August 11, 2007, 12:31:57 PM
QuoteHe thinks it's a build-up of small plaque desposits in the veins of the penis, which is common with older age, which result in curvature etc. However it doesn't really explain the narrowing/shortening/hardening.

I'm sure you misunderstood your doctor.  Did he use the word thrombosis, phlebitis or something similar?

Here are case studies related to a condition of the veins in the penis.  It is not age related, but maybe this is what he could have been referring.  Notice in the first case the man had a "palpable nodule".  From my reading this is not always the case.  This may not be what he was talking about.  I would try to find out. 

http://www.actasurologicas.info/eng/jan2006/v30n1p80.htm  -  Thrombosis of the dorsal vein of the penis (Mondor's phlebitis). A case report

http://www.jaoa.org/cgi/reprint/101/4/235  -  Penile Mondor's disease in a 22-year-old man
EXCERPT:  Sclerosing lymphangitis and Peyronie's disease both need to considered in the differential diagnosis of a painful, fibrotic lesion of the penis, however. Sclerosing lymphangitis is characterized by thickened and dilated lymphatic vessels whose morphology is serpiginous. Peyronie's disease results from a thickening of the tunica albuginea and presents as a welldefined fibrotic plaque on the penis. If doubt persists even after taking the history and performing the physical examination, consider ultrasonography.

Another (better) thought is plaque build up in arteries?  Mostly seen in older patients?  Maybe?  The doctor could have even said blood vessels.  Did he say anything about cholesterol?

Wasa, I truly hope you get better. 



Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ninjagaiden on August 14, 2007, 06:40:16 AM
Dear all,

About the propecia stuff against hair loss, I used that thing for a couple of years between 18 and 20 years old. My bro for 3-4 years I think (but he has no pb with his dick I think). I stopped it when I read it was modifying some hormone levels...

I thought it was not natural. And having inherited  Thyrroid (sorry for translation) problems from my mom, I didn't want to use hormone-level modifying agents to make things worse...

I told my bro to stop too, and he did. Now that I discovered what Propecia is really about, I'm glad I made my bro quit this crap. I can't believe docs prescribe this crap like candy. And thus without informing their patients. 

There should be a note on this product, but I guess nobody would buy it afterwards  ::)

So let your hair down!  ;D

2 questions now:
1) What about Alostil (french brand, I think it's Minoxidil for the US-English natives). What it this product really? Can it cause problems like propecia? If yes, I say goodbye to this stuff (been off and on using it for years) . But I guess it's less harmful.

2) Is Peyronies-disease-help.com a complete joke or what? I read their stuff, half of it seems serious, the other half is commercial bulls..t to me (a book about being a great lover with peyronies, seems like a con game...hey, guys don't think I was looking for a book like that ;D,was just giving an example!)  What site would you recommend in order to buy "herbal treatment" for Peyronies (if it doesn't harm, why not give a try?) 

3) What is your recommended most fashionable cap that I can wear in order to hide the baldness? 

PS: There's a very high probability that Question 3 is a joke... :-*
Title: Re: Everything is Killing Us
Post by: Liam on August 14, 2007, 07:03:36 AM
Forget Propecia and Minoxidil, Diet Coke (as well as the other "also ran" diet soft drinks) is killing us.  Do a Google search of "aspartame".  Here is a list of symptoms from one site.  I fail to see "sexual symptoms" also listed on other sites.

Eye
blindness in one or both eyes
decreased vision and/or other eye problems such as: blurring, bright flashes, squiggly lines, tunnel vision, decreased night vision
pain in one or both eyes
decreased tears
trouble with contact lenses
bulging eyes

Ear
tinnitus - ringing or buzzing sound
severe intolerance of noise
marked hearing impairment

Neurologic
epileptic seizures
headaches, migraines and (some severe)
dizziness, unsteadiness, both
confusion, memory loss, both
severe drowsiness and sleepiness
paresthesia or numbness of the limbs
severe slurring of speech
severe hyperactivity and restless legs
atypical facial pain
severe tremors

Psychological/Psychiatric
severe depression
irritability
aggression
anxiety
personality changes
insomnia
phobias

Chest
palpitations, tachycardia
shortness of breath
recent high blood pressure

Gastrointestinal
nausea
diarrhea, sometimes with blood in stools
abdominal pain
pain when swallowing

Skin and Allergies
itching without a rash
lip and mouth reactions
hives
aggravated respiratory allergies such as asthma

Endocrine and Metabolic
loss of control of diabetes
menstrual changes
marked thinning or loss of hair
marked weight loss
gradual weight gain
aggravated low blood sugar (hypoglycemia)
severe PMS

Other
frequency of voiding and burning during urination
excessive thirst, fluid retention, leg swelling, and bloating
increased susceptibility to infection

Additional Symptoms of Aspartame Toxicity include the most critical symptoms of all
death
irreversible brain damage
birth defects, including mental retardation
peptic ulcers
aspartame addiction and increased craving for sweets
hyperactivity in children
severe depression
aggressive behavior
suicidal tendencies

Aspartame may trigger, mimic, or cause the following illnesses:
Chronic Fatigue Syndrome
Epstein-Barr
Post-Polio Syndrome
Lyme Disease
Grave's Disease
Meniere's Disease
Alzheimer's Disease
ALS
Epilepsy
Multiple Sclerosis (MS)
EMS
Hypothyroidism
Mercury sensitivity from Amalgam fillings
Fibromyalgia
Lupus
non-Hodgkins
Lymphoma
Attention Deficit Disorder (ADD)

If transportation faced the same scrutiny as things we ingest, we might be walking.
Title: Re: Liam -
Post by: Hawk on August 14, 2007, 07:15:58 AM
Liam,

And your point is _______________________________________ ???  ;D

Possible points:

1. You are dead serious and we have found the cause of almost all the world's health problems

2. Since there is crap on the internet, and propecia is on the internet,  propecia related complaints must also be crap.


I am hoping for a 3rd point since neither of the two I listed are sound logical reasoning.

PS: Sorry, but I need to have points clearly and directly presented.  I am not very good with nuance or points that are implied but not stated.

Title: Re: Liam ...
Post by: George999 on August 14, 2007, 11:02:55 AM
Liam's point is that if we lose our sense of humor, its all over.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ninjagaiden on August 14, 2007, 11:39:43 AM
I understand Liam's pseudo-cynism, but I was wondering about Propecia particularly.
Was also talking about Minoxidil, which to me doesn't look as harmful, but I wan't to know if there's a danger according to you guys...

Liam, I remind you about your theory about hydrogen being dangerous in some situations (I can't remember the post in which you said that), and I follow your advice and will quit drinking water from now on. Or at least decrease my water consumption by drinking Vodka and whisky (since there is only 60% water in these products)...

But I was serious about propecia, you think it was a dangerous product regarding the reason why of this forum? (i.e. peyronies!)

   And for some reason, I don't care about the menstrual changes  as an aspartame side effect...
Title: 22yr old male i think i have the disease but not sure.......
Post by: Chrisshef on August 14, 2007, 12:23:44 PM
Hi all firstly I'm a 22yr old male.  i believe i have some of the symptoms of this disease.

i have a slight curve in my penis.  i mean literally very slight but more worrying i have a substance under my foreskin which looks like a calcium deposit (i had a online medical examine a photograph).
the substance is on the top and my penis curves very slightly to the left.  a matter of mm's.

now the 2 go hand in hand to the description of this disease..... i will be going to see a doctor at some point should you guys recommend it.

i have no pain my erections are hard and basically apart from the white hard calcium LOOKING deposits i have nothing wrong with my penis.

my question is..... i thought the calcium deposits was a secondary stage of the disease and the cause of the bending from a buildup.  so if this is true how can i have such a slight curve and still get the deposits?

any replies would be great.

thanks in advance
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on August 14, 2007, 01:18:31 PM
Dear Chrisshef

Neither I nor anyone else can diagnos you over the internet. You are smart to go to a doctor.

However, if there is something white-ish and hard that looks calcific on the skin of your penis, then that is almost certainly NOT Peyronie's Disease (Peyronies Disease). Peyronies Disease is a disease of the tunica which is located just underneath the skin on the penis shaft, not on the visible surface. I don't know what it is, but it is not plaque form the sounds of it. Get it checked out though. It is not likely to be serious, more likely a sebaceous gland or something that is full of hardened material.

Tim
Title: Re: Propecia
Post by: George999 on August 14, 2007, 03:08:59 PM
I think the direct concern about Procepia is the fact that it STIMULATES Testosterone.  By inhibiting a substance in the body that naturally breaks down Testosterone, it allows the level of Testosterone to build up in the bloodstream.  The problem this can cause is that the body reacts by trying to regulate the excessive Testosterone levels.  The end result can be that once you have discontinued the Propecia, you have shocked the body into lowering its natural Testosterone production and you end up with low serum Testosterone levels and all of the problems that accompany that situation.  Anytime one does anything that works by manipulating hormones, one has to be very careful.  Once the body detects that the basal level of a particular hormone is out of range, it will try to adjust its level, and in doing so, it may end up out of range in the other direction when the course of treatment is terminated.  - George
Title: George Got It!!!
Post by: Liam on August 14, 2007, 05:11:05 PM
And look at all the sites when you seach aspartame.  Why is one more credible than the other?  Only researchers for Propecia would lie?  Researchers for the sugar substitute industry wouldn't. 

Don't be too serious, guys.

But keep a skeptical eye on both big business and the whistle blowers.  I heard someone say the truth may be gray.  ;)
Title: Re: Chris - See your Doc
Post by: Liam on August 14, 2007, 05:16:42 PM
Chris -

Go to your doc!!!  May be nothing.  May be serious.  Go NOW!!!

Liam
Title: Re: Liam ...
Post by: George999 on August 14, 2007, 07:03:56 PM
Since Liam has injected the subject of artificial sweeteners, let me tell you, there dangers go far beyond toxicity.  The story goes like this.

1)  Sugars make people fat.  The reason that sugars make people fat is because the contain empty calories, right?  Well that is what we have all been taught.  But actually it is only a little part of the story.  Sugars actually fatten us up for multiple reasons:

     A.  They most certainly DO contain EMPTY (containing no nutritional value) calories, and LOTS of them.
     B.  Sugars are absorbed very quickly in the Jejunum (the central part of the three part small intestine).  The literally get dumped right into the bloodstream.  This results in what is known as an insulin spike as the body tries to deal with this sudden rush of sugar.  Insulin is both inflammatory and fattening.  If you don't believe insulin is fattening, just ask a diabetic who has to take insulin.  In fact a problem that doctors have with diabetics, especially younger ones, is that they try to skip on their insulin in an effort to lose weight.
     C.  Sugars release a signal from the stomach (neuropeptide Y) to the hypothalmus that causes the hypothalmus to crank DOWN the metabolism and make you hungry, sending you in search of even more calories.  This is a powerful sequence that does not get enough attention.  If the resultant hunger causes the person to eat even more sweets, an endless loop occurs and obesity just happens.
     D.  Sugars nourish specific bacteria in the intestinal tract which cause the digestive process to be more efficient thus promoting even more weight gain.

2)  The problem with artificial sweeteners (ALL OF THEM) is:
     A.  Artificial sweeteners, although calorie free and insulin neutral, DO trigger NPY which knocks out your metabolism and makes you hungry.  So after you consume that diet soda, you are primed to over eat and snack, snack, snack.  This, combined with the depressed metabolic rate, very efficiently causes weight gain.
     B.  And that is not all.  Even though artificial sweeteners do not contain calories and in some cases are not even absorbed by the body (ie Splenda), they can and do nourish a bacterial culture in the intestine that promotes weight gain along with other undesirable effects.

So, indeed, don't believe everything you hear about artificial sweeteners.  A lot of it is coming from the people that are trying to sell it to you and they won't tell you these things.  The best way to get your carbs is by following the glycemic index and choosing those products that are on the low end, mainly healthy fruits.  There are no shortcuts to good health.  You won't find good health at the fast food joint, no matter how many diet Cokes you drink.  You will only find it in the produce aisle of your local grocery store and by getting enough healthy exercise to maintain your metabolic rate and burn off those calories that are essential as a part of a balanced diet.  Eating healthy foods (especially certain fibers and fats) causes the gastro-intestinal tract to release Cocaine-Amphetamine-Regulator Transcript or "CART", which causes the hypothalmus to shut off hunger and crank UP the metabolism.

- George
Title: Re:Conspricy
Post by: Liam on August 15, 2007, 07:22:32 AM
I know side effects have been discovered after a product has been released.  The problem I see is when a laundry list of "side effects" is published covering a wide range of symptoms without evidence.  These are reported by anonymous people with no accountability.  Medical sites are magnets for people with hypochondriasis.  At least one article has coined the term "cyberchondriac".  http://www.Saturday.com/tech/2002/06/24/.HTML

If we believe these unreported symptoms exist, we must also accept the existence a government conspiracy with the drug companies.  The conspiracy, by necessity, would not just be to cover up the initial report of the symptoms, but also any subsequent reports of the symptoms.  Possible?  Maybe.  Likely?  No.

This is not to say there are no side effects for men who take propecia.  My concern is that, without limits, a group dynamic will start.  To use an "old school" term, mass hysteria happens.  Soon everything bad that happens to you (real or imagined) is the result of the drug.  These symptoms get posted.  They appear to have equal credibility as the other (sometimes real) side effects.  The next person identifies with a symptom and the downward spiral has started.

Another issue is research is taken out of context.  It is then cited in impressive lists that would boggle the mind.  Most people don't read or understand enough to know the limited usefulness of the references.

The real danger is someone may actually have a symptom and falsely attribute it to the drug and not seek medical help (because the doctors are in on the conspiracy).

I feel "whistleblower" sites can be a good thing.  A great deal of caution and skepticism must be used because of their inherent nature not because of the administrator or the members.  Enjoy these sites.  Let them stir questions.  But, always check everything with your doctor.

Now I am sure someone will say that this forum does the same thing.  There are some parallels.  True enough.  The difference is Peyronies Disease is a recognized condition with well known symptoms.  Members are always encouraged to seek the best medical help.  When a new member comes in with atypical symptoms, there is always someone to guide the person to seek the appropriate medical help.  Do we push the boundaries sometimes?  Yes.  That is one reason Hawk has always stressed the importance that we not diagnose on the forum.

Healthy skepticism is always a good thing when advice is anonymous ;)

Title: Re: Drug side effects ...
Post by: George999 on August 15, 2007, 10:43:47 AM
Another problem with the whole side effect issue is that the very problem underlying the reasons why the drug was prescribed in the first place and actually be causing the "side effect" and not the drug itself.  Thus it sometimes becomes difficult, even for the professionals, to differentiate the real side effects from the "noise".  In the case of Propecia and Peyronies, ED, etc., I think our time is probably better spent searching for a solution rather than focusing on Propecia itself.  One must always remember, the internet is a huge gathering place as Liam suggests, and there is always a possibility that all of these Peyronies sufferers may have contracted Peyronies even if they had never taken Propecia.  Just a thought.  - George
Title: Propecia/Proscar
Post by: flexor on August 15, 2007, 12:00:13 PM
Although this discussion has concentrated on Propecia, don't forget that finisteride is widely prescribed under the name Proscar for enlarged prostate.
Title: One pill was enough
Post by: Hawk on August 15, 2007, 12:23:58 PM
During my totally non-symptomatic prostate issues preceding a diagnoses of prostate cancer, the uro prescribed finisteride for no other reason than a high PSA with 2 negative biopsies.  There was no clearly explained point that I can recall.  I took one pill, read the insert of possible side effects and flushed the rest. 

The acknowledged side effects of this drug are not difficult to recall.  They are enough to get a man's attention, especially if you have no clear need for the drug
Title: 22yr old male i think i have the disease but not sure.......
Post by: Chrisshef on August 15, 2007, 06:13:08 PM
sorry i meant the substance is on my actual penis.....not the foreskin.  just near the head.

its visible from the surface of my actual penis though its not under the penis skin..... if you get me.

i will be going to the doctors though but wanted some idea of what i had before i can see him.

i cant understand why it doesn't hurt/doesn't bend(any more than a normal penis) but i have this substance......i know the disease can be very random but i thought it was pretty painful from the stories i read...... so i guess what i don't understand is how can i have this "substance" which lets say it is a plaque but i have none of the other symptoms? i also thought the plaques were quite far into the "stages" of the disease
Title: Re: Chrisshef - Hope this Helps
Post by: Liam on August 15, 2007, 06:33:55 PM
QuoteConditions of the Penis
When spots, lumps or rashes appear on the penis one of the first concerns many men have is whether they have a sexually transmitted disease. In most cases most spots are both common and harmless. It is the size, shape and color of the spot that helps to determine whether there is something to be concerned about.

Tiny nodules beneath the skin which appear over the scrotum and the base of the shaft of the penis are normal hair follicles.

Small pearly spots around the crown of the glans affect about 10% of all men around the ages of 20-40. These 'pearly penile papules' if diagnosed, are not infectious and require no treatment.

Small red or purple spots on the penis can appear on the glans, shaft or scrotum and usually affect younger men. Known as Fordyce spots they may appear in one's or two's but they frequently occur in patches of up to 100.

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Skin Rash
Identify, diagnose, and treat uncomfortable Skin Rashes.
www.SkinRashHelpGuide.net

Yeast Infection in Men
List of Male Yeast Symptoms Two Free Home tests for Candida!
www.CandidaSupport.org
These spots come about as a result of dilated blood vessels. They can look a little unsightly but they are completely harmless. No easy way is known of removing this type of spot.
A small-medium sized raised spot on the scrotum, sometimes filled with pus, is most likely just a spot or a boil.

Thick red patches with a well defined edge could spell psoriasis. Psoriasis can be inherited but is rarely serious. Typically, psoriasis of the penis will be treated by a steroid cream.

Pink-brown or skin-colored lumps with a moist surface could suggest genital warts.

A single, round and painless ulcer of the penis or scrotum could be primary syphilis.

A painless irregular genital ulcer could be penile cancer.

A single, painless but foul-smelling ulcer could be the result of a tropical disease and may be a sexually transmitted disease if sexual contact has occurred in the tropics.

Small blisters forming painful ulcers sounds like herpes simplex. This is the commonest form of genital ulceration. This is highly infectious and usually transmitted sexually. The first episode is often associated with a feverish illness.

Small gray ulcers with a red halo could be apthous ulcers. These occur in crops and can get better by themselves. However, because they are easily confused with herpes simplex a lab test is needed to determine a proper diagnosis.

Small raised papules often with a central depression could be molloscum contagiosum. This is a harmless and common viral disease in children most commonly spread through sexual contact in adults.

Irritating and burning red rash could be a condition know as balanitis.

The list above is not exhaustive. Self diagnosis of spots, lumps or rashes is not a good idea and sometimes a proper diagnosis can only be made with clinical tests. As with all genital signs and symptoms seek medical advice and practice safe sex.

Updated: January 2, 2007

Source: http://menshealth.about.com/od/diseasesconditions/a/penis_spots.htm

QuoteStatistics, Causes and Symptoms Penis Cancer
The American Cancer Society estimates that about 1,530 new cases of penile cancer are diagnosed each year and about 280 men will die of penile cancer in 2006. Penile cancer occurs in about 1 man in 100,000 in the United States.

Although penis cancer is very rare in North America and Europe but much more common in some parts of Africa and South America, where it accounts for up to 10% of cancers in men.

Definition of penis cancer
Cancer of the penis (penile cancer) is a malignant growth of cells in the tissue and/or external area of the penis. Penis cancer is a very rare disease that is generally an aggressive form of cancer that has a tendency to spread.

Prognosis following diagnosis of penis cancer
If penile cancer has been diagnosed and treated early then the 5 year survival rate is 65%, so it is important to seek medical attention quickly.



Cancer Symptoms?
Information and Treatment Options at our Cancer Resource Center
www.Cancer-Treatment-Guide.net


Elderly men are the most likely to suffer from this form of cancer.
Causes of penis cancer
The cause of penis cancer unknown but there is a higher incidence of penile cancer in uncircumcised men and men who do not keep the area under the foreskin clean. The presence of smegma, the cheese-like secretion under the foreskin, appears to increase the risk.

Signs symptoms of penis cancer
The most common symptom is a tender spot, wart like lump or open sore, usually painless, that originates on the tip of the penis. Pain and bleeding usually only occurs if the cancer is advanced. Penile cancer that is not treated can spread into the lymph nodes of the groin and on to other parts of the body. Malignant cells, cancer in the lymph nodes are abnormal, often painless, swellings.

Diagnosis of penis cancer
Diagnosis of penis cancer is made by the surgical removal and biopsy of the lump. This excludes other diseases such as penile warts or syphilis.

Stages of penis cancer
There are 4 stages of cancer of the penis


Stage 1 penis cancer. Malignant cells are found only on the surface of the penis

Stage 2 penis cancer. Malignant cells are found on the surface, tissues beneath the surface and in the shaft of the penis.

Stage 3 penis cancer. Malignant cells have spread to the lymph nodes in the groin.

Stage 4 penis cancer. Malignant cells have spread through the penis, lymph nodes in the groin and to other parts of the body.
Article updated 02/15/2006

12Next
Updated: February 15, 2006

Source: http://menshealth.about.com/cs/menonly/a/cancer_penis.htm
Title: Re: Chrisshef - More Help?
Post by: Liam on August 15, 2007, 06:41:58 PM
QuotePsoriasis: most commonly affects other parts of the body, particularly the knees, elbows and scalp, but occasionally first appears on the penis, usually on the glans or inner surface of the foreskin. Psoriasis appears as thickened red papules or plaques with a well-defined edge. In uncircumcised men, and at other sites, it has a scaly surface. It rarely causes irritation. It is caused by an abnormality of skin production and can be inherited. It is unsightly, but rarely serious. There are a number of effective treatments available, such as steroid creams and calcipotriol cream (Dovonex).

QuotePlaques

Penile plaques do not usually have a serious cause, but some are infectious and others may develop into more serious conditions: Erythroplasia of Queyrat, lichen sclerosis and balanitis xerotica obliterans may lead to the development of penile cancer.Make sure you seek prompt medical advice about penile plaques.


Balanitis and posthitis: balanitis is an inflammatory condition of the glans penis. Posthitis is an inflammatory condition of the foreskin. Symptoms include local irritation, burning and a red rash. Sometimes the skin appears to be peeling off as if scalded. Bacteria and yeasts such as candida can cause it. It is more common in older men and those with diabetes. Balanitis is infectious and may be sexually transmitted. It can be treated with appropriate antimicrobial creams.


Erythroplasia of Queyrat: appears as a sharply demarcated bright red plaque with a velvety surface. It is usually painless, and not itchy. It is an early manifestation of penile cancer and needs prompt diagnosis and treatment. Excision of the affected area is usually curative. It is not infectious.


Zoon's plasma cell balanitis: Zoon's balanitis appears as a bright red, shiny-surfaced plaque on the glans or inner surface of the foreskin. It is usually painless but may be accompanied by itching. The cause is unknown. It may respond to application of steroid cream, but frequently recurs. Circumcision is curative, but not essential. It is a harmless condition but can be confused with the much more serious condition of Erythroplasia of Queyrat. It is not infectious.


Lichen sclerosis and balanitis xerotica obliterans: lichen sclerosis appears as white plaques on the glans, foreskin or shaft of the penis. It usually has no symptoms, although burning and irritation have been reported. Balanitis xerotica obliterans is a severe form of lichen sclerosis affecting the foreskin of uncircumcised men. The opening or edge of the foreskin is firm and has a white scarred appearance. It is quite inelastic and will not pucker open as it is retracted. This may interfere with passing urine or sex. Both conditions may, rarely, lead to penile cancer and circumcision may be necessary. They are not infectious.


Psoriasis: see above, under papules.


Eczema: most commonly affects other parts of the body, but occasionally it may first appear on the penis. In such cases, it may be a skin reaction to an irritant that is better be described as dermatitis. Eczema appears as diffuse red plaques with a poorly defined edge and finely scaled surface. It frequently causes quite severe irritation. It can be caused by infection or local reaction to skin injury from chemicals or radiation. There are a number of effective treatments available, such as steroid creams. It is not infectious.







Last updated 04.10.2005

Source: http://www.netdoctor.co.uk/menshealth/facts/spotsonthepenis.htm


Get my point?

Title: Re: Chrisshef
Post by: Hawk on August 15, 2007, 06:50:05 PM
Chris,

Bottom line is that Peyronies Disease plaque is UNDER the skin.  it is not in any way attached to the skin or surface tissue. if you move the skin back and forth it glides over the bump.  The bump does not move with the skin.  Since it is beneath and unattached to the skin, plaque has no color visible on the skin.

let us know what the doctor says and good luck.
Title: Penile Ultrasound
Post by: asmith on August 15, 2007, 07:07:53 PM

  I have an important question to ask before I have a "Penile Duplex Study," aka, ultrasound of my penis on this Friday.  Per his written instructions, my urologist requested gray-scale imaging to rule out anatomic lesions and also color flow imaging and spectral waveforms.  He also instructed prostoglandin stimulation.  My first questions is:  Does anybody know what is prostoglandin stimulation/ what would be its purpose?  my second question is:  If its used to erect a penis (for better ultrasound study or study in general), what could this stimulation do to my penis? cause further scarring?  swelling? etc.?  do you recommend against it? should i just have an ultrasound without prostoglandin stimulation?

Thank-you. 

will post update with my results after the ultrasound. my brief history:  sudden curvature and intense pain of my penis starting back in February after a sexual injury.  have seen 6 urologists, including well-known Dr. Levine.  still have pain, curvature.       
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on August 15, 2007, 07:17:17 PM
An injection to get a reliably hard erection to assess blood flow is what the prostaglandin is for. If you have gone to 6 urologists, then you are finally going to get a more complete assessment it seems.

It is not helpful for us to tell you what to do - except to do something. Some have had adverse reactions to injections that have led to later problems with worsening Peyronie's but more often, that is in the context of repeated injections, not a diagnostic injection designed to induce erection.

Tim
Title: Re: A Smith prostaglandin stimulation
Post by: Hawk on August 15, 2007, 07:25:47 PM
Prostaglandin stimulation sounds like a euphemism for an injection of prostaglandin E1 or maybe a combination of prostaglandin E1 and papaverine which is a somewhat of a common combination.

There has been MUCH covered on this subject since it seems to come up about once every week or two.

if you click on this quote, it should take you to post #625 under "General Comments" . 
Quote from: ThisSux on July 25, 2007, 12:13:45 PM
The discussion continues between me and "ThisSux" from there up.  We have about 2 or 3 posts each on the topic.  After you read this, let me know if this helps.

Hawk
Title: Re: What Would Liam Do?
Post by: Liam on August 15, 2007, 07:44:39 PM
I can't tell you what to do.  In this case, if it were me, I would follow my doctor's advice.
Title: Re: Hey, Sugar!
Post by: ninjagaiden on August 16, 2007, 06:49:09 AM
Hi sweet boys!!  :-* :-* :-*

To continue the thread on the Propecia (Finasteride) and sugar / aspartame thred,
I understand your point Liam, about the mass hysteria, but I also very understand Hawk's POV who just flushed the finasteride pills...

I just cannot understand why they prescribe propecia like candy for HAIR LOSS!
Like Hawk, if they would have told me first about the side effect or even how this thing works, I would have said "F... you and your sh.. medicine, doc, you can leave that stuff on your shelf".

Liam, I know that all drugs and chemicals have side effects (and I know some people get hysterical over such or such product), I just want to be informed first by my doc when he prescibes me something. I don't want to swallow pills blindfolded... especially things that can mess with my toy... You know what I mean?...
I took this stuff for hair loss, but I don't consider my hair more important than my genitals... so I would have like to be informed first.
Now I don't blame this drug to have caused the worsening of my curvature, don't get me wrong, but I think young guys who lose their hair shouldn't be prescribed drugs like that unless they know the consequences... A doctor should inform the patients...  
Title: Re: Mew - Viagra Vs. Injection
Post by: Hawk on August 18, 2007, 12:29:16 AM
Quote from: Mew on August 10, 2007, 11:20:52 PM
Regarding my initial question about the doppler needle test leading to further fibrosis issues: I left a message with the Urologist requesting I be able to take Viagra, we will see what he says. I will need to give this much thought if he says no and that I MUST have the injection."

I will be surprised if the doctor agrees to Viagra.  I have never known one that did.  The issue is that viagra only works with psychological or physical stimulation.  Injections are totally independent of any sexual stimulation.  An exam rood is pretty darned void of sexual stimulation and the doctor cannot count on the unlikely hope you will be able to stimulate and maintain an erection through a test.

The story about 14 injections to reduce an erection is one of the most incredible stories I have ever heard.  I cannot imagine you will have to worry about that.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Mew on August 18, 2007, 02:41:04 AM
All, just something to think about regarding Finasteride and the link to tissue fibrosis, via some more studies... since I recall reading about TGF-Beta playing a role in Peyronie's:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1751036
Penile Rehabilitation After Radical Prostatectomy: Important Therapy or Wishful Thinking?

... "Together, these studies suggest that the collagen content in the corpus cavernosum is regulated by oxygen tension through the increased or decreased expression of TGF-β1 and PGE1. During low oxygen tension, increased expression of TGF-β1 activates a molecular cascade to increase collagen and other connective tissue synthesis. During high oxygen tension, on the other hand, increased expression of PGE1 activates an alternate cascade to decrease collagen synthesis."

-------------
The Finasteride connection:

Regressive changes in finasteride-treated human hyperplastic prostates correlate with an upregulation of TGF-Beta receptor expression
http://www3.interscience.wiley.com/cgi-bin/abstract/76946/ABSTRACT?CRETRY=1&SRETRY=0

... "RESULTS
The prostatic epithelial compartment seemed to be a primary target site for finasteride action, since we observed moderate to severe glandular atrophy after 4-6 months of treatment. TGF-B receptors were upregulated in treated cases.

We assessed a twofold increase in TBRII mRNA levels in treated cases as compared to controls. An increase in both TBRI and TBRII at the protein level by immunostaining was observed, which also provided a helpful means for detecting glands undergoing regression.

CONCLUSIONS
We conclude that finasteride may modulate the TGF-B signaling system to promote changes leading to apoptosis of epithelial cells and prostatic glandular atrophy. "


... thoughts? Obviously they are referring to the Prostate but since penile shrinkage/fibrosis has been associated with Finasteride use, I see no reason to discount the correlation of Finasteride's upregulation of TGF-B and the impact that may have on the penis.
Title: Re: Finasteride, TGF-β1, PGE1
Post by: George999 on August 18, 2007, 01:18:57 PM
Mew, that is a REALLY good connection!  They are using Finasteride to fix the problem by actually KILLING OFF prostate tissue!  Outstanding!  It does make one have to wonder what this "medication" is doing to other tissues!  What might it be doing to the testes?  - George
Title: Re: Finasteride
Post by: percival on August 18, 2007, 05:10:29 PM
If, as it is claimed, Finasteride promotes penile fibrosis, it is an important finding. It gives us the opposite of what we seek, and therefore perhaps defines the molecular structure to avoid. Also it helps define the mechanism by which fibrosis occurs and this should lead eventually to a cure for Peyronies Disease.
Thanks for these posts.
Percival
Title: Re: preventing tissue fibrosis
Post by: percival on August 18, 2007, 05:59:16 PM
In the article supplied by Mew, it appears that sildenfil taken regularly will help prevent fibrosis by increasing oxygenation in the cavernosa. I am interested in this - although the cost of this medication in the UK is very high. Some questions:
Sildenfil = Viagra - works ok but 100 mg dose needed and effect is short-lived
Taladafil = Cialis -works ok at 20 mg dose and effect lasts for 24 - 36 hours
I find Cialis more cost-effective and there is less anxiety about the 'opportunity window'
Can I assume that as they are both PDE inhibitors that Cialis would do the same thing as Viagra when it comes to combatting fibrosis?
In the UK the cost of either treatment works out at about £8 or $16 per tablet. What is the cost in the USA or elsewhere? (for real stuff, not generic or fake).
Regards,
Percival
Title: Re: Percival - Viagra cost
Post by: Hawk on August 18, 2007, 07:18:43 PM
Percival,

Viagra 100 mg costs about $10 per tablet or a little less if you don't get any insurance coverage or discounts.  Pfizer does give a discount of every 4th prescription free but it cannot be combined with any other discount through an insurance company.

Viagra, Cialis, and Levitra are all PDE5 inhibitors.  Cialis gives me delayed back pain 2 or 3 days after taking it.  Although it is a listed side effect I have no idea what that is about.  I cannot find the cause.

Often when these drugs are taken for Peyronies Disease or other penile health, they are taken at quarter dose every day.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: percival on August 18, 2007, 07:26:18 PM
Thanks Hawk,
I tolerate Cialis very well.
I plan a trip to USA in September. There is a big price advantage if the exchange rate stays the same. I assume that I would need a prescription from a doctor in the USA?
Regards,
Percival
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Liam on August 19, 2007, 12:03:05 AM
Percival,

Without getting too involved, Finasteride causes a reduction in certain hormones.  If these hormones are completely removed (castration), fibrosis occurs.  There may be a connection.  It is not so straight forward, though.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ocelot556 on August 19, 2007, 02:42:08 AM
Hey guys -

I've been a lurker since I came down with Peyronie's in November - two weeks after I started propecia for hairloss. I'm 23 years old, and the stuff sent me into a really bad depression. I thought I could push through that, but as soon as I saw a noticable curve I flushed my pills, too.

I was dating a girl who moved halfway across the country four months previous, and hadn't hurt myself during sex with her anytime before that. Since I had no partners in that time, I can only conclude that it was the propecia that did it.

My Urologist, though he suggested that I hurt it in some way later, quasi-agreed with my idea. "Oh yeah," he said. "That stuff messes with your body, it's bad news." -- but he also told me most patients don't get worse. My peyronie's is progressing.

So that's it, nothing to add to the discussion other than to add my own .02 - it might not be as rare as all that, just that it's hard to talk about because people tend to disbeleive you. And when your junk is bending, you don't want people calling you wrong or a liar.

Please keep up all your good work reporting this stuff. I've gotten over my hairloss, but having done this to my own body, with or without the knowledge that it would happen, is killing me. I take comfort in that there are so many promising studies displayed here, that maybe modern medicine will find an effective treatment soon.
Title: Re: Ocelot
Post by: ninjagaiden on August 20, 2007, 08:07:42 AM
Hi Ocelot,

A 2 weeks treatment may be too short to consider this product as the direct consequence of your bending.
I quit Propecia also (after 2 years). There seems to be a connection, but maybe in your case, "it just happened", whithout being a direct consequence of the use of Propecia.

At least you threw this stuff to the bin. Make sure you check out the package before swallowing any other pills, "modern medicine" always have side effects. Some are not important, but the Propecia stuff is, to me, too harmful to take it as a treatment for hair loss. :-\

I think Propecia's side-effects cases will probably show up more in the future, when the peyronies disease will be more discussed in magazines. I think that already more men have this condition than what the percentages say. These guys just don't show up yet because they're probably ashamed of it.

I don't think people will call you a liar if you tell them, just be careful who you tell this stuff to. Some people have bad intentions, you don't want the wrong people to know about this.

Talk primarily to the doctors. To my mind, telling it to relatives / friends won't help, they just can't understand, not being affected by this condition. I've never told this to friends, I think they will understand for 5 seconds, then they'll be fed up if you come talking again about this. They can't understant unless they have the same problem. They can't understand how much it can affect a guy's mind.

And that's good to see you think optimistically about the future, I also think that more effective treatments will appear in the near future.
Title: Re: Ninjagaiden - Masturbation
Post by: ocelot556 on August 21, 2007, 12:33:51 AM
Thanks for the response ninja, I'd rather this whole mess be because of some other unforseen reason than the propecia - it takes away some of the feeling responsible for my peyronie's. But I agree, that's going to go down eventually - like Vioxx - as a horrible moneymaking medicine that did more harm than good.

But faith in medicine is something you've got to have, because acceptance only goes so far.

Another question - I'm sure this has been asked before, but does masturbation, in anyone's opinion, work to worsen the plaques? I don't have any anecdotal evidence to this, but I'm young and a very sexual person. Although my love life has slowed down since the development of my peyronie's, my bodies willingness for it has not. I'm not going crazy with it, but it's a daily thing. I'd hate to think helping myself is actually hurting myself, if y'all get the drift.
Title: Re: Micro Trauma
Post by: Liam on August 21, 2007, 06:12:03 AM
Many people attribute their Peyronies Disease to masturbation.  How masturbation and propecia together will react, Lord only knows.  I am being a little tongue in cheek here just to say, be careful in ascribing cause.  The are many factors involved.  If not, everyone on took propecia or masturbated would have fibrosis. 

Good Luck.

Liam
Title: Re: Ocelot - masturbation question
Post by: Hawk on August 21, 2007, 08:30:20 AM
Ocelot,

Like most things with Peyronies Disease, because most suffer in silence, there is little research and studies are limited.  This means we have to try to use rational thought and logic to project answers from the sketchy evidence we have.  The prevailing wisdom is that erections are beneficial and that trauma (even micro trauma) or anything that induces inflammation is bad.

Within those guidelines the words with any sex are: gentle, lubricated, cautious, and if it causes discomfort during or after, don't do it.  The answer to that last question my vary at different periods of Peyronies Disease.  What causes discomfort at one stage will be different than what may cause discomfort at another stage. 

Otherwise sex and erections are likely to be physically beneficial.
Title: Re: New Member with Question
Post by: BertCobb on August 22, 2007, 04:33:38 PM
Dear fellow participants,
     Thank you for all you are doing to make those with this "thorn in the flesh" seem "normal".  I am a 61 year old physician who was recently diagnosed by a urologist as having Peyronies Disease.  I had to challenge him to get him to decide it truly is Peyronies Disease.  I find that physicians, even urologists, seem to be reticent to give a direct diagnosis as though denying the problem will make it go away.  I sensed that he wanted to say "At least you don't have cancer".  I would have beaten him half to death and said "At least I didn't kill you."  He gave no advice or counsel other than to say "Don't have any more 'rough sex'".  I and my wife of 41 years have decided to be pro-active and to learn as much about Peyronies Disease as possible and to enjoy our sexual lives together for as long as we can.  "You may be too old to cut the mustard but, you are never too old to lick the jar."  I am on Vitamin E and using a VED daily.  Because of pre-existing ED, I also use
Viagra 100 mgm from time to time.  If Viagra increases the size of the penis, would it not be good to use regularly even if not planning intercourse? She seems to enjoy the upward curvature of the tip in the missionary position but I am unable to orgasm inside her because of numbness of the tip from Peyronies Disease and a chronic lower back disk condition.  Does anyone have any suggestions for dealing with extreme numbness?  Thanks for listening and I will read your replies with great interest.
Title: Re: Welcome BertCobb
Post by: Angus on August 22, 2007, 06:56:14 PM
Welcome, BertCobb. What you encountered at the uros office is a scenario played out too many times, and most of us here have been through this. It may help if we knew what your general location is and someone here may help you find a uro nearby with a good track record in dealing with Peyronies and ED. VED use has helped many of us here; it is not an overnight fix but is developing a positive track record with those who stick with its use. Post any questions about VED use; some of us have a bit of knowledge about them and their use.
Your wife may also enjoy joining the private womens discussion...I encourage this. Women can discuss Peyronies issues privately and discreetly. She would be welcome there and have the opportunity to gain other womens perspectives on these issues.
Others will reply shortly and may be able to answer your specific question more directly. Again, welcome to the board!
Title: Re: BertCobb
Post by: Tim468 on August 22, 2007, 07:00:33 PM
Hi,

If you are at all like me (I too am a doc), then you will have access to more complete data via online libraries and through hospital networks.

I recommend reading anything written by T Lue, L Levine, and N Gonzalez-Cadavid. In particular, you might find it worth reading about TGF-Beta1 pathways, and methods of blocking TGF actions.

In general, many of us use these in our self-care (but not all!), as we wait for more definitive cures or treatments:

Broad spectrum Vitamin E - 400-800 IU per Day as an anti-oxidant
http://lpi.oregonstate.edu/infocenter/vitamins/vitaminE/
http://www.ajcn.org/cgi/content/full/84/5/959

L-Arginine, several grams a day, for it's upregulation of Nitric Oxide, and possible ability to help reverse fibroblast activity
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=14996430&dopt=AbstractPlus
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1743-6109.2005.00090.x

Many of us prefer the S.A.N Vasoflow brand of arginine because it is packaged with L-Norvaline which blocks the degradation of arginine to citrulline and collagen, which blocking should in turn promote NO synthase pathways towards NO formation.

Pentoxifylline 400 mg three times a day (see above references) - this prevents TGF function and in turn promotes NO pathways.

Sildenafil (Viagra) 25-100 mg a day, or a similar phosphodiesterase blocking agent (specifically PDE5). (see above references)

Personally, I prefer to take Horny Goat Weed (HGW), 2-5000 mg a day (equals 2-500 mg of active ingredient icariin, which is about 0.1 strength of Viagra - ie equivalent to 20-50 mg Viagra a day)(and cheaper) in order to give myself a more smooth ride than Viagra gives me. If I start Pentox (I plan to), then I may try to get Cialis instead, which agrees with me. Although many of us have one degree or another of ED, and like the beneficial effects of PDE inhibitors on that, we are really taking the stuff to fight fibrosis. Better erections is a nice side benefit, though.  ;D

Many of us are taking other anti-oxidant and anti-inflammatory supplements with the thought that it may help, and hoping it has other benefits as well for our health.

Use of the VED is helpful for many of us - although my Peyronie's remains active, my penis remains fairly straight and only bothered by a gentle upwards curve now. Unfortunately, the dents and list to the left is not better, nor is the pain now and then associated with firm erections.

The numbness is not characteristic of Peyronie's Disease, unless you have suffered damage to your dorsal neurovascular bundle. I would look hard for evidence of diabetes, nerve disease or testosterone deficiency (which can be associated with diminished sensation).

Good luck and welcome!

Tim

Hawk - you may want to move this with a redirect for him to find it!
Title: Re: Tim
Post by: BertCobb on August 22, 2007, 09:58:12 PM
Dear Tim,
     Thanks for the reply.  I know that you understand how this hit me like a ton of bricks.  I had a central L4-5, S1 disk at age 30 which almost did in my sex life.  I made compensation for the back disease for the next thirty years until Viagra came along and restored my erections.  I don't know if my numbness is in my glans or in my head.  My wife is my best friend and she is totally supportive.  She is a member of the women's forum and has found a lot of support there.  I am an allergist/immunologist by trade and I am into immune modulation.  Little did I know that I would have such personal interest.  Do steroids have any part to play in the restoration of sensation?  I have been reading about lysing agents that are being touted for the treatment of Peyronies Disease and frozen shoulder syndrome with phase II studies.  Do you use a VED?  Do you use a "ring" to maintain turgidity?  Have you found prostatic massage helpful?  I hate to be so personal but I am pretty desperate since I have been unable to ejaculate with intercourse for a while.  My main deformity is at the tip with a 35 degree dorsal angulation of the glans/shaft.  I have a hard ring of plaque around the base at the level of the skin of the groin.  I initially injured my penis because it was already numb and I was unaware of the injury until I had pain on later attempts.  What means have been most helpful for you and your partner?  I am perserverating about my penis and it seems to pervade my every waking moment.  I did the typical thing that people do when faced with life-changing news: I decompensated and denied the problem.  I got very depressed but I am getting over that with more information and the support of this forum.  Physicians either do not know or do not care until they experience the disease for themselves.  I had a small penis since birth as my mother took DES during her pregnancy to prevent miscarriage.  Somehow, I was able to father two boys and satisfy my wife by learning compensating techniques.  I have lost 3 inches in length and over 1.5 inches in circumference.  The glans is sharp like an arrow.  I got by with what I had but now it is melting away to the point that I look like a little boy.  The dorsal scarring is pulling it upright and it cannot "dangle".  Boy, I never thought I would ever have this discussion with anyone in my life.  Desperate times require desperate measures.  Thanks again for all the help and support that you and the other guys have and will give to me.  I hope to return the favor to others.  Pass it on.  Gratefully yours,  BC
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on August 22, 2007, 10:39:17 PM
It's time for me to go to bed, so I have to be brief right now. I also need to post a "My Story" because others have asked me similar questions (and until I do you might find that very interesting reading about others). Also, the "Newly Diagnosed Highlights" area is full of helpful information.

I agree totally with you, and I am (chronically) angry that I know more about this now than most urologists - even though I cannot tell a tissue tolerance of the tunica when tugging on it with a clamp as they might. But some of the neurologic numbness/pain you describe is so long standing it may not recover well. But we have men here with a history of radical prostatectomy who have recovered enough to have sex (and to orgasm).

Hang in there. This is not a cardiac arrest, and you do not have to fix this in the next ten seconds. But you will learn - as have I - a lot of stuff here you did not know, and it may help you. Although I knew a lot from the start, the biggest thing I have come away from here is having lost my terrible sense of isolation. And that is what hurt me more than anything.

Tim
Title: Re: Burt
Post by: Kimo on August 23, 2007, 12:15:02 AM
Hello Burt and welcome to the forum, your in the right place.....I'm 62 and have had this now for about 10 yrs...Before and after i got this peyronies i had experienced the numbness and no feeling that you are talking about..This is what helped me,,,I found out my testosterone was very low, no feeling and no tingling in the groin's and had a hard time ejaculating,,,man i was really stressing out over it all to the point i also went to a sex psychologist,,,he told me to relax and take more time, i was under a lot of stress at the time and his advise helped,,,BUT my main problem was the low testosterone....At first i started out using the Androgel, it brought my levels up quickly and then a few months later i switched over to the Androderm patch which kept me on a more even level and worked great.....After a few months the gel took my levels up too high and i was climbing the walls, [ 831 ] way to high for me, i mean i was so horny i couldn't stand myself and my wife couldn't do enough to help me out, so i told the doc and thats when he put me on the patch and it kept me around [ 700 ] and i was still horny and had a lots more feeling back where i needed it and i didn't feel like i was loosing my mind....and i was able to ejaculate again more normal...

Anyways, thats what i experienced and it worked for me.....Have your testosterone checked it will tell you a lot.....

Glad your here and hope we can help you, be encouraged you will get through this........

Kimo
Title: Re: RoyRogers - Marijuana
Post by: Hawk on August 29, 2007, 04:38:40 PM
RoyRogers,

You are killing me.  You cannot sport the name of RR around and smoke pot.  That was the boyhood hero of many of us on the forum.  Is nothing sacred.   Also, I have seen a cop crack a few potheads in my day and I did not notice that it seemed to help the inflammation. ;)

Roy,  Seriously, this forum supports discussion on possible treatments that have either studies, substantial evidence, or at least strong logic to suggest they may work.  South American healers are a topic for some other forum or the Off Topic" area

I further think that anyone smoking marijuana for inflammation is rather looking for any feeble excuse to justify smoking pot.  We do not advocate illegal activities on the forum.
Title: Re: Roy
Post by: Liam on August 29, 2007, 05:49:35 PM
Roy,

I'm having a martini because of its antiseptic qualities.  I included 2 olives stuffed with garlic because of the benefits to health in olive oil and garlic.  Also, vermouth is said to antioxidant qualities.  You know, after reading your post, I'm making it a double.

I think I'll fly to Brazil before my trip to London.

PLEASE ::)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Sjfactor on September 04, 2007, 12:57:25 PM
I've had Peyronie's since the age of 14 and now I'm 25... Does Peyronie's disease stop the growth of the penis? If so, will curing Peyronie's initiate remaining development?
Title: Re: Sjfactor - Peyronies since age 14
Post by: Hawk on September 04, 2007, 03:06:16 PM
Sjfactor,

Welcome to the forum.

Who diagnosed you with Peyronies Disease at age 14 and what initiated the Peyronies Disease.

I ask because Peyronies Disease is almost unheard of at that age.  In fact I have yet to hear of a confirmed case of Peyronies Disease at 14 years old.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Sjfactor on September 04, 2007, 04:03:06 PM
Thanks for responding. I was told by a urologist that I may have peyronie's disease. Growing up I use to wear very tight underwear. Laying on my back, my penis is bent at a 40 degree angle. The bend starts 1 1/2 inches from the base. Does Peyronie's disease stop the growth of the penis? For instance, girth growth.... If so, will curing Peyronie's initiate remaining development?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on September 04, 2007, 05:36:59 PM
Growth of the penis is over when puberty is over. Fixing Peyronies (by any measure) will not improve "growth".

However, girth or length may be improved by traction and/or VED, especially if there is shortening due to Peyronie's (but not so certainly for a non-affected, or "normal" penis).

Tim
Title: Re: Second Opinion
Post by: Liam on September 04, 2007, 05:49:14 PM
SJ,

Get a second opinion on the diagnosis.

Tight underwear...we were all raised in tighty whities.

Liam
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Sjfactor on September 04, 2007, 06:32:10 PM
Well, I didn't want to say anything because I didn't want my question answered with another question, but I have a connective tissue disorder. I read that having CTDs may cause scared tissue in the penis to not  heal properly. I've also had the tip of my penis torn when 13. I read that any traumatic damage to the penis can cause Peyronie's as well.

I know that some in cases of peyronie's disease, it causes the blood not to fill the entire penis (the head of the penis does not fully expanded). This has happened to me occasionally. When I bend my penis straight (to where the curve is) I fully erect.

This is why I asked if it stopped the growth of the penis, girth wise. I'm for certain I have this disease.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Liam on September 04, 2007, 07:11:46 PM
SJ,

You present with a very unique situation.  You really need a skilled urologist to look at your case.  Some of the stereotypes of Peyronies Disease may not apply while others may. 

Stunted growth doesn't happen with Peyronies Disease. 

QuoteI know that some in cases of peyronie's disease, it causes the blood not to fill the entire penis (the head of the penis does not fully expanded). This has happened to me occasionally. When I bend my penis straight (to where the curve is) I fully erect.

Absolutely atypical of Peyronies Disease.

Let us know what your doc says.   

Good Luck.

Liam
Title: Re: Sjfactor
Post by: Hawk on September 04, 2007, 09:56:00 PM
SJ,

I have to agree with liam (that is kind of rare)  ;)

You need a very competent urologist, not just any urologist.  For starters if you have had a bend for more than 10 years I doubt that any oral treatments are going to significantly impact your condition.  If you have congenital curve no oral treatment will impact your condition.  A mechanical device may have some impact.  You do not need a doctor that tells you "it could be Peyronies Disease".  You need a doctor that tells you he knows conclusively what your problem is.  Having this at 14 strongly suggests it is not Peyronies Disease.  It clearly is not from underware.  Unless something clearly suggests it is Peyronies Disease the evidence points away.  If something else strongly suggests it is, then you have a stand-off.  If something positively concludes it is Peyronies Disease you can start to feel confident of the condition and start studying treatments and considering your options.

It all starts with a thourough evaluation by a saavy urologist.  Especially in your case.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on September 05, 2007, 09:18:26 AM
sj

I echo what you heard. You have something wrong it sounds like, but if it is "Peyronie's Disease" is not so important as figuring our exactly what your anatomy and physiology is. To do that you need an academic urologist who is world renowned for his work looking at you. Given the complexity of things (CTD and a history of trauma), you would do best to go straight to the very best. To do that you may need to wait to set that up, or ask for help from him or her and get names of closer people to you.

I would recommend Anthony Atala, M.D., who is the Director of the Wake Forest Institute for Regenerative Medicine, and Chair of the Department of Urology at the Wake Forest University School of Medicine in the state of North Carolina. You would be very lucky if he took on your case, but he might also be able to get you into see a colleague of his with his supervision also.

Good luck.

Tim
Title: Questions about heredity and treatment
Post by: hascal on September 10, 2007, 07:25:44 PM
Hi Guys - In a couple of weeks I plan to see my Son ( grown & married) and tell him about my condition. In all the Doctor visits I have neglected to ask if this is hereditary. Any input? Also, please reply if anyone has had any current treatment involving injections, topical creams etc.  :-\


post moved from the psychology topic by Hawk
Title: Re: Hascal: Heredity
Post by: Hawk on September 10, 2007, 08:11:50 PM
Hascal there is some degree of a hereditary component to Peyronies Disease but it is not at all clear and most people with a father that has Peyronies Disease will not get Peyronies Disease.  Also, most people that do get Peyronies Disease have no knowledge of a father with Peyronies Disease, or other fibrotic disorder.  All that is really reported is that it is most prevalent among people of Northern European decent and least prevalent among Asians.  Even this information may be suspect and associated with reporting.

To speculate about the hereditary factor with a son is probably not a good idea given the sketchy data.  If the issue comes up, the most accurate statement you could make is that it is believed that men of northern European decent are somewhat more prone to the disorder but it only effects between 1% - and 10% of men so the odds are not high.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: hascal on September 10, 2007, 08:26:36 PM
Hawk - Thanks for your reply and your guidance to to proper forum. I have a mother who is Irish and a father who is Scottish. After reading comments about verapamil injections I will have to do some research before I start in two months. This forum is the best that I have found in a year of research.  :-\
Title: Re:Hascal - The Best Forum
Post by: Hawk on September 10, 2007, 08:33:35 PM
Hascal,

I am interested if you know of ANY other English language Peyronies Disease forums that are actually active (daily or even weekly posts)?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: hascal on September 10, 2007, 08:49:48 PM
Hawk - The main ones I used were "biospecifics" and "medhelp". These were mostly general and not as detailed as this forum. Gotta sign off - Thanks for your support !!! Hascal  ;D
Title: Re: Hector - Hascal
Post by: Hawk on September 13, 2007, 11:08:52 PM
Quote from: hector on September 13, 2007, 06:45:43 PM
...I've got an appointment with my urologist tomorrow morning, so I really want to go in with the best understanding I can and have him prescribe me the best stuff.  So... 

Viagra -- Is the purpose of Viagra to induce erection for men whose Peyronies Disease makes this much more difficult? ...I still get them spontaneously and even randomly without any spefific stimulation, probably as frequently as I did before the onset of my Peyronies Disease.  So is Viagra right for me?

Yes, If Viagra does what it is theorized to do and what animal model indicates it does, it is for men like you and hascal, and others.  The Viagra is not for erections, it is to fight the progression of plaque via inhibiting Transforming Growth Factor Beta 1 (TFG-B1).  It is usually taken as 1/4 to 1/2 of a 100mg tablet daily which is quite expensive.  You could opt for every other day or take a chance on an herbal substitute like horney goat weed that is a weak version of some of the same properties.  That is not to say it is exactly a weak Viagra.

QuoteTraction -- Intended to re-mold the penis, right?  Dr. Levine's clinical trial is still underway, right?  I've seen a lot of guys recommend this, but I guess the bending and stretching worries me ...
What bending?  Read the traction thread on the main forum.  It is not long.  It should answer these questions. 

QuoteVED -- Intended to stretch the penis length-wise, right? 
length and girth.

QuoteShould I be trying to have more or fewer erections, for longer or shorter duration of time?  i.e. Should I be giving the old weenie a rest or a regular workout?  Tim, you have advised regular erections because you say this helps combat progression, right? ... But my biggest fear is doing anything to make my Peyronies Disease worse. I still do get occasional pains in the plaque area, which makes me think it isn't totally static yet, and I usually get some pain there after an erection.
The body gives nighttime erections for a reason.  It is not just sex dreams, it is sleep cycles and it keeps oxygen to the tissue.  Starve the tissue of oxygen and increase TFG-B1.  This means erections are healthy for tissue and natural stretching.  Whether you have sex with the erection, masturbation or otherwise is a bit of a different matter.  There is no data that "sex" helps penile tissue.  It is obvious that some sex can be damaging.

QuoteGiven all this, does the PAV cocktail still seem like my best bet?  I was surprised to see that noone recommended the drugs I asked about trying (Potaba, Colchicine, Verapamil, Neprinol).  When I first saw my uroligist, he made it seem like my only options were Vitamin E, Potaba, or surgery.
(With a patient smile)  :D , we understand your need for certainty but we already told you that.  Your post was clear. We responded with an understanding of your situation.  Your doubt comes not from miscommunication, but from lack of study.  It will come.  We did not recommend those drugs because we know no one that has been helped by them. Verapamil injection might be the exception but the data is unclear whether they help, hurt, or do nothing .  That is in the hands of a very skilled urologist.  If your urologist recommended potaba or surgery, he has demonstrated that he is too uninformed to be guiding your treatment.  If he is very open and interested in Peyronies Disease (unlikely), he may benefit from the experience of doctors that have made this an emphasis, (Dr. Lue, Levine, and others).  If you had time before your appointment you could try taking along supportive documentation for PAV.  You will likely need to find another doctor however. There are no studies establishing the effectiveness of the other drugs you mention, even though they are old drugs have been around for many, many, years.  For the most part I can only describe potaba as a drug that the history books have been closed on (my point of view). Go to "search" and search on each of those drugs (be sure to check "show results as messages"


Hawk
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: thedude on September 28, 2007, 03:10:57 PM
Hi, so I have a question regarding my penis curavature. It's like a banana when it's "getting" erect, but more or less straight when erect. The only thing I notice, structurally, is that there's these hard, thin, almost like ligaments, that run down the length of of it, one on each side on the top of it. They are not symmetrical either, one is more "bowed" than the other.

Are these hard ligament-like formations the cause of the peyronie's? Am I mistaken here, and these are really natural parts of the anatomy? What can I do to fix it?

Thanks.

Title: Re: Re: TheDude
Post by: Hawk on September 28, 2007, 03:16:31 PM
Dude,

Welcome to the Peyronies Disease Society's Forum. 

Are these conditions you mention recent developments or has this been something that has existed for sometime?

A little more background would be helpful; age, any injury, general health.

Hawk
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: thedude on September 28, 2007, 04:00:57 PM
Cause may be finasteride, though curvature didn't develop while on it. I was on it 2.5 years, and now off 1.5 years. I found out I had low testosterone a few months ago, so I started taking high-dose zinc to treat it...it was while taking the zinc (about a week into it) that the curvature developed and persists to this day.

I guess injury could be a possibility. I had a sex-related incident probably about a month before it actually developed...but I really don't think it was that bad, absolutely no appearance of injury at the time...but like I said the peyronie's actually appeared only a week after I started taking the zinc, so I think this correlates better.

I'm most curious about the the hard ligament-like thing though...it only really appears on the right top side...like just over the top of the right corpus cavernosum. Not as noticeable on the other side. This may have nothing to do with it, but it's just something I noticed.

So, I think that's just about it. I'm 23 years old. Also, I'm currently on SERM therapy to try to restart my endogenous testosterone. Has adding androgens back ever been shown to resolve these peyronie's issues do you know?

Thanks.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: George999 on September 28, 2007, 05:31:17 PM
Dude, my perception is that it probably was the injury, however slight, that actually precipitated the Peyronies.  Zinc can be toxic in high amounts, but not something that would cause Peyronies.  HOWEVER, low testosterone + the slight injury very easily could = Peyronies.  The time lag you mention would be completely expected.  As for the "ligament" type "structures", Peyronies is quite chameleon like in the ways that it can present itself.  Palpable structures and lack of them tend to be all over the map.  The common denominator is the sudden development of deformity.  SERM therapy (attacking estrogen rather than replacing testosterone) is apparently the new up and coming treatment for guys with low testosterone.  I wish you the best on that one!  Anything that can jump start your testosterone levels is likely to dampen the effect of the Peyronies significantly in my estimation.  - George
Title: Re: Whoa Dude -Gnarly
Post by: Liam on September 28, 2007, 07:00:16 PM
Could be related to veins or lymph system if anything.  I am thinking this because of your description and you mentioned a trauma and your age.  If so, it will heal.  The good news is what you described does not sound typical of Peyronies Disease to me.  :)

Do I understand correctly there is no curve when fully erect?

Go to your urologist.  Is a urologist treating you for hormone imbalance?  If so, ask him.

Sorry about the subject.  Somebody had to do it.  ;D

Good Luck
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: thedude on September 29, 2007, 10:42:08 AM
Thanks george and liam...good info.

No, not really bent while straight...you can't sort of tell somethings a little off, but as long as it's fully erect, there's really no issue. I'm just hoping it's not progressing or anything.

I'm seeing an anti-aging doctor (Dr. Crisler in Michigan, if you're familiar) for the hormone issue.

I'll say that it is inspiring to hear about wasa's testosterone recovery below..the fact that he didn't need TRT after his finasteride crash, though it did take 3 years...hopefully the tamoxifen will bounce me back similarly.

Thanks again.
Title: Re: For the record ...
Post by: George999 on September 29, 2007, 11:02:58 AM
Dude, Liam is correct in suggesting that it is very unlikely you actually have Peyronies.  The distinguishing characteristic of Peyronies is deformity when errect.  Perceived deformities in the flacid state usually mean nothing.  - George
Title: Hi Analyst
Post by: Analyst7 on October 02, 2007, 06:28:22 PM
Hi,

I am 50 and have just begun to experience a maybe 30-degree curve to the left in the head area during erections only - the curve begins in the circumsized area. I had a vasectomy six months ago, but I have no direct trauma/bruising/scarring that I know of. My sexual function is fine - I can have erections, intercourse (slightly painful now) and orgasms, and I really can't understand why this has come about. However, I have cardiac issues as well, and take verapimil, metoprolol, propafenone, lovastatin and aspirin as part of a daily regime. I also take a daily multivitamin and a fish oil capsule. I followed a thread here that suggested that metoprolol can cause a curve. I have yet to see a urologist (I will), but I wonder if any of you can help me understand if I have Peyronies and what treatments might work best for someone who is just now experiencing symptoms? I would like to get smart before I visit the doctor. Even though my symptoms don't appear as extreme as the few pictures I have seen, I am still very uncomfortable with this situation, as I'm sure all of you were/are.

Thank you much,

Analyst7
Title: Hi Analyst
Post by: Steve on October 02, 2007, 06:39:18 PM
Welcome to the best Peyronies Disease resource on the 'net (IMHO anyway).

You mentioned that you will go see a Uro...that's absolutely the best advice anyone can give you!  Prior to your visit, look around in these forums (especially the 'Newly Diagnosed' one) to get 'up to speed' on our latest ideas of what treatments might work, and which ones we're convinced haven't a chance (like Topical Verapamil).

Read-read-read!  Get youself informed of the possibilities so that you're ready to barrage your Uro with questions -- that's what you're paying him for isn't it?

Steve
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Kimo on October 02, 2007, 11:18:51 PM
Steve,,,,I used the Topical Verapamil and it worked great for me. I know that no one wants to believe me, but i'm the one who used it and it worked...

When i first got Peyronies i was twisted and bent like a ugly donut and my plaque was the size of a quarter..I started using the TV and it took about 3 months before i noticed any change and then it was all of a sudden and by the end of the 5th month i was almost straight but left slightly bent up..My plaque was softend up or broken up but still there...A year later i went back on the topical V to see if it would do anymore for me..I was on it for a whole year, using it 2 times a day, faithfully...At the end of a year my plaque was all gone and no more pain when getting an erection....I could always feel it penetrating the skin [ tunica ] and i know that it really did help me...

Now i know that it doesn't help everyone, but it does help some..I have talked to other men over the past 10 yrs who have used it with success. If i hadn't seen any results after 6 months to a year then i would agree with you, but i was willing to go for the long term to give it a try and i'm glad i did....I have no reason to promote this product or tell a lie other than it really did help me and i'm grateful for it....

This is just my humble opinion and all i want is to be a help to others.....

Kimo
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: safelyslowly on October 03, 2007, 10:19:05 AM
Hi,Im 18 years old.From what I've seen around the net,Im quite worried that i might have Peyronie's. Im experiencing pain when my penis erects but the pain stops completely when its fully erect. Its been like this for around a month and just recently,I noticed that i have a bump on the left of the shaft just a little below the head,the bump cannot be felt when its fully erect. It might be caused by excessive masturbation since i grip on it quite hard when i do but my penis isn't curving. Please do tell if i have Peyronie's or not,its very unnerving and worrying for me.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on October 03, 2007, 11:22:25 AM
Hi Analyst and Safelyslowly,

Analyst - it seems you are off to a good start in learning about the disease and what to do that will not hurt and might help.

SafelySlowy - try living by your name when it comes to masturbation and lighten the grip! It sounds like you have some form of swelling and/or inflammation, but beyond that it is only speculation. I would recommend getting a doctor to look at it - it may really set your mind at ease and get you headed towards better and safer sexual health/habits.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: safelyslowly on October 03, 2007, 11:33:42 AM
Thanks a real lot Tim468,I have to know though,can the bumps be felt when the penis is fully erect for those with Peyronies?And does the curvation begin with the pain of erection or after the period where the pain stops?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on October 03, 2007, 11:40:58 AM
It vcaries with different men. Most have pain and curvature together, then just the cuirve is left when the pain resolves (if it does).

Still, better to get checked out than to speculate on the internet. You will find that those of us here who are doing best all have worked with (or tried to work with) urologists to get better.

Tim
Title: Re: Safely
Post by: Liam on October 03, 2007, 05:28:27 PM
Safely,

Get checked.

Odds are you don't have Peyronie's.  Not many your age get it.  The symptoms you describe sound like inflammation or irritation.  Your penis is your friend.  Be kind to it.  ;D

Is the bump hard or more fluid-like?  Is it deep or on the surface?  I feel plaque no matter what state.  I got a nodule then later a curve. 
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: safelyslowly on October 03, 2007, 09:15:52 PM
Thanks for the info Liam! My bump is not on the surface,its deep and feels hard,not too hard,the bump itself isn't painful at all and the size is around that of a pea.
Title: Re: SafelySlowly
Post by: Hawk on October 03, 2007, 09:31:32 PM
SafelySlowly,

Welcome to the forum.

I also say get checked.   This is likely inflammation, much less likely Peyronies Disease, and even very much less likely penile cancer, but since a urologist cannot diagnose you long distance, computer geeks, truck drivers, and police officers surely can't.  Don't trust diagnoses of your only penis to internet opinion.  This forum is not for that.

You make an appointment and we will support you before and after, but not instead of.

Best regards

Hawk
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: stevo88 on October 08, 2007, 09:33:38 PM
I am wondering If I have peyronie disease because I have had a trauma before and now my penis hurts after a while of masterbating now. I had like 3 or maybe 4 incidents where my penis made a cracking sound but Its not like it hurt or anything. It just made that sound and it was not like I felt like I was bleeding internally or anything. But then the last time I heard that sound my penis felt warm and it felt like it was bleeding kind of like inside. And I tried to catch an erection and I couldn't I was so scared to death. But I wasn't erect when this happened, my penis was flaccid but when I put up my underwear I bended my flaccid penis and it made that sound causing that. I was so scared. But I couldn't do anything during the moment because I had to go to work. So I went to work. After work I came back from work, I ate and took a good nap. After words I was able to catch an erection again. But with little pain. Then after a few days  there was no pain. But now its been like 1 month and a couple weeks the pain is coming back but only after during masterbation. It does not hurt right away, It hurts after a while of masterbating like 20 minutes or 30 minutes. I usually masterbated for 30 minutes- 40 minutes. But the thing is that the soreness is in the same place where before I caught my penile trauma and where It felt like it was bleeding internally. It is on the right corpora cavernova. I already had a penile curve to begin with Which I found out is because my left corpora cavernova is less developed and my right one is a little over developed causing a slight curve. Which I think Has to do with masterbating to much with my right hand and my penis leaning to the left during erections in my pants when I tried to hide it because I didn't want to be seen like that in public. But After masterbation the pain continues on and it feels warm and sore. After a couple hours though it goes away or after I sleep. I have been masterbating with my left hand now to see if it will correct it but It will takes maybe 2 years of masterbating with my left hand to show good improvement first because I masterbated only with my right hand and my right corpora cavernova is that much larger then left. Maybe 3 years. The way I masterbate is that I wrap my hand around like a C grip like in jelking except I am not only moving  up but up and down like regular masterbating with lubricants and I apply some pressure on the corpora cavernova  I also do some penis stretches, most of the time stretching it to the right so the left side of the penis can stretch longer leaning more over the right side so when its straight it can become longer and balance more with the longer right corpora cavernova. of course its much safer to do that when its more flaccid so I do it when only about 40 -50 percent erect. Also I am not sure if It can be because simply my right corpora cavernova is more developed or it can be scar tissue but its not lumpy. its not like a skin scar or whitish either it's just I can see the shape of it through my skin. When I stretch the skin it stays in place so I know its not part of skin. Its inside on the corpora cavornova. Its like I have 4  larger  C rings on my penis where it hurts. on the corpora cavornova. you cant see it because there is no coloring but you can see the through the skin revealing the shape when I catch a full erection or pull the skin tight back and catch maybe a 50-60 % erection. I tend to see these things on the rest of it but they are much lower and smaller. Also on the left side of well because it is less developed it is much harder to notice. I have to stretch my skin much tighter back and move the skin alittle to notice them better for the left side. But the 4  ring of where I said. however the C ring is  backwards since its on the right side. But that is also where the soreness is around. I know the curve I already have is due to imbalanced development of my penis but I don't know If I could be developing peyronie or have it even right now. Those other  C things I told you I think are like tears or micro tears but the other 4 look alittle to larger and is also where I am experiencing the pain at. I am not sure. According to what you may think is peyronie specifically do you think I have it or is developing it at this moment. Or could be something else?
Title: Friendly Advice
Post by: Liam on October 08, 2007, 11:06:07 PM
Stevo,

Some suggestions:

1) see a urologist  ;)

2) stop all the damn masturbating  :o

3) cut back on the caffeine 
;D  ;D  ;D
Title: Re: Steveo
Post by: Hawk on October 09, 2007, 12:30:37 AM
Stevo,

Welcome and thanks for posting.

It is good that you joined and posted because you need some input.  There are many things that you accept as fact that I think have no basis.  The first is that your penis is curved because you tend to masturbate with the same hand.  What led you to accept such an idea?  Everyone tends to masturbate with one their dominate hand.  Neither ALL, nor most, nor even a large percentage, of men curve accordingly.  No urologists support such a concept.

Next you say
QuoteI also do some penis stretches, most of the time stretching it to the right so the left side of the penis can stretch longer leaning more over the right side so when its straight it can become longer and balance more with the longer right corpora cavernova. of course its much safer to do that when its more flaccid

That assumption was never presented on this forum or by any urologist I know of. 

As Liam said.  Discuss this at length with a real urologist that will explain your condition, the likely causes, and the various options for treatment.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ocelot556 on October 10, 2007, 03:42:43 AM
Is it me, or are some days "worse" for your Peyronies Disease than others? It seems to me like sometimes I will look down and notice a progression of the curve - but doing nothing to resolve it, or taking very small measures, it seems that the next time I look at the curvature, it's back within what I'd consider a normal range (well, normal for the curve I already have from this junky disease).
Title: Re: Some Days are Worse
Post by: Liam on October 10, 2007, 05:47:00 AM
The penis undergoes normal changes in size and shape reacting to variables such as temperature.  Sometimes these normal changes seem to make the condition more noticeable  :(.

There are periods when I have had inflammation.  Those are no fun.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: amigo on October 10, 2007, 08:01:53 AM
Yeah, summer has ALWAYS been a much better time of year for me than winter as far as Peyronie's goes.  Penile retraction (i.e. shrinkage) during cold weather seems to make a lot of my Peyronies Disease symptoms noticeably worse.  It's generally harder to achieve an erection and the hourglass/hinge effect is much more pronounced.  I suppose it stands to reason that the tissues just can't expand at the same time they're being yanked up tight inside the body.  Of course, I've always been pretty "cold-blooded", my fingers and toes can get downright icy while others feel comfortably warm.  I totally think there would be a market selling fur-lined penis cozies, "Is your penis cold and lonely?  Try our muff!"  OR  "Nothing makes a penis happy like a muff" (Hurry and slip your dick inside a "Foxy Muff", "Bunny Muff", or the tried and true Beaver. We promise you won't regret it.)

Stress can also cause the same problem triggering the fight or flight response.  I suppose that back in the day, when you were being "attacked" and feared a "predator/aggressor" there was no genetic advantage to having your dick dangling down around your knees... it makes for an easy target. Needless to say, those who suffered serious injury to their genitals probably weren't as successful at passing on their genes to the next generation.  So those with particularly small members should always emphasize to their partners that they are simply HIGHLY EVOLVED.  How's that for seeing the protective athletic cup half full instead of half empty?
Title: Look out Liam!
Post by: Steve on October 10, 2007, 09:04:23 AM
Liam -- looks like you've got some competition in amigo!
I always considered laughter the best medicine -- you guys keep us all entertained!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: regularguy on October 18, 2007, 09:31:00 PM
Hello, am after some advice - I am 39 years old and have just noticed 2 hard lumps, about the size of peas (1cm dia), one on each side of the base of my penis when soft, about 3cm from the groin.  When erect, my penis looks like an inverted bottle, about a third thinner and curved to the right where it joins my body.  Until I just noticed the lumps, I never thought anything of it, but since researching this site, I have realised that the width reduction has become more pronounced over the last few years, and has probably been going on gradually for close to a decade. 

There have recently been a few occasions when I haven't been as hard as usual, but these have been intermittant, and I've put them down to getting older, and not following a particularly healthy lifestyle (i smoke, drink coffee and alcohol, eat too well etc), but no major health issues, aside from occasionally severe eczema.

Having been through a myriad of treatments for eczema (all the usual ointments, including steroid creams when it flares or becomes infected) I know that my GP isn't particularly constructive when faced with anything unusual, preferring to fob it off as "nothing serious" - so, I wonder if anyone could help with these questions...

1. Does this sound like Peyronies, and if so, does it get progressively worse? As if these lumps grow, they're in such a position as to restrict the base of my penis, possibly the blood flow, which i would imagine isn't going to do much for my sex life?
2. Has anybody had it untreated for this long with no pain? Or in this place, does the base of the penis not hurt as much?
2. Has anybody had any experience with knowledgeable NHS urologists in London, who I may be able to request a referral to?

I'd be very grateful for any answers or advice before I seek diagnosis, be good to be able to go pre-armed, and not come across like a hyperchondriac, as there's no immediate crisis, but it seems to have the potential to become one.

This site looks like it gives terrific support for a difficult and unusual problem - nice work. Thanks for any help.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on October 18, 2007, 10:54:31 PM
Regularguy:

My best advice to you from reading your post as to what you see as symptoms is get to a qualified urologist as soon as possible for an examination.

It is not the intention of anyone on this forum to diagnose Peyronies Disease here. That is reserved to a physician with the proper knowledge of the business.

So seek out the best qualified uro you can find and be sure to write doown a list of any and all questions that you can think of to ask when you see him/her on your first visit.

I am sure that you will hear from others in this regard, so look for more answers.

Old Man
Title: Re: Regular Guy
Post by: Liam on October 19, 2007, 06:24:58 AM
It sounds like it could be.  But, I agree with Old Man.  There are other things, when described, sound similar.  A urologist should check it out.

Study the drawings of the penis and become familiar with all the parts of the penis.  This will help in your discussion with the urologist.  Right down your questions before you go to the doctor and take notes as you go. 

Here are highlights of the different topics.  It will help you get up to speed.  :)

Good luck and keep us informed.

Liam
Title: Re: Regular Guy - Penis Anotomy
Post by: Hawk on October 19, 2007, 09:54:18 AM
A PS: to Liam's post
https://www.peyroniesforum.net/index.php/topic,106.0.html

Click on the images to enlarge the penis anatomy (if were only that simple in real life)  ;)
Title: skinny "neck" ? ? ?
Post by: getting_there_in_oregon on December 28, 2007, 03:34:42 AM
i obtained my 'situation' here by my erection getting bent and hearing a crack sound. the curve was a somewhat classic bending back toward my body. not to the side but just back a good bit. it got a little worse for a year then improved a little. now, 5 years later it doesn't seem to be doing anything.

THE QUESTION:

the beginning of the shaft is as wide as it used to be but then by penis gets skinny up until the head. like a skinny "neck". it accounts for a reasonable bit of the penis, making my penis at least an inch shorter than it was and possibly as much as 2 inches shorter! it seems like it's not just scar tissue in one spot but something more maybe. the erections are still hard, though that area feels less girthy and makes me nervous. it seems to be filling out at a snails pace, if noticeably at all. i've been less willing to drop the pants in front of girls and that's got to change. this forum helps!

Q: has anyone out there experienced this? any ideas?

thanks! (so stoked to have found this forum)
(p.s. sorry about the lame name.. hahaha.. i was trying to sound optimistic.. ya know "getting closer to healing" or something like that.)


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on December 28, 2007, 07:53:24 AM
That is called the "Hourglass" deformity, and many of us have that too. A tapering penis is called a bottle neck, and I guess the rest are just bent.

Welcome!

Tim
Title: Re: Oregon
Post by: Hawk on December 28, 2007, 10:41:42 AM
Welcome to the forum,

I think your manifestation is not that uncommon.  I would consider conservative use of the VED or Traction along with some supportive supplements like Natural E, ALC and only expect slow improvement over 6 months or a year.  Any improvement at least means you are not getting worse.
Title: concerned
Post by: whygodwhy on January 13, 2008, 10:52:08 PM
i stubbed my penis during sex recently and ever since i've had mild pain in groin area/penis.  it has me kind of concerned.  my penis seems a little more curved and theres been some pain in the tip of penis during erection which ive never had before.  the night of the incident was over 2 weeks ago and theres still mild pain while im flacid.

is it possible i made my peyronies worse or is this some minor internal bruise type deal?  my penis looks a little more crooked while flacid and erect.

i don't want to masturbate or have sex cause it feels worse afterwards so ive been feeling pretty depressed.  is there anything i should do?  topical/oral vitamin e?  use a VED or traction device?  or just wait and hope it gets better?  it feels like i bruised my crotch or something although nothing's visible other than the slightly more curve.  should i go to my urologist or would that just be a waste of time?  what should i do???



thanks for your help guys.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on January 15, 2008, 10:58:58 PM
whygodwhy

Not sure what happened... It would not hurt to hit it with some anti-inflammatory meds like Advil (ibuprofen) at a good dose like 800 mg three times a day for up to two weeks. Additionally I would def use vitamin E, and keep on stretching (if you already are - or start!).

Tim
Title: Re: Help for Peyronies Disease
Post by: roadieman on January 16, 2008, 11:52:57 PM
OK, now I got it. Peyronies. So now what. I can see there are surgical proceedures, wholistic, enzymes, plaque disolvers. I'm confused. I want to eliminate this thing on my !!!!.  Is there a medical approach to this other than surgery. Or does this relegate me the the herbal scene in which it will cost me thousands of dollars in herbs, scaffolds to stretch me or what. I tried the Verapamil externally with no luck    NOW WHAT  Please is there any help

Paul
Title: Re: Help for Peyronies Disease
Post by: Old Man on January 17, 2008, 10:56:41 AM
Roadieman:

Whoa! Slow down and do some serious thinking before leaping to conclusions. So you have Peyronies Disease, not what is the question/answer? You have asked the 64,000 one as there seems to be no set rules for any individual. All of us on the forum appear to have different symptoms, similar sympoms and other related problems with this crazy mess. Also, ED can enter the picture as well.

What affects one guy may or may not affect the next guy. So, first if you have not done so, get an appointment with a well qualified uro in the field of Peyronies Disease treatment. There are not many, but there are some very good ones out there, so search for a well recommended one who has much experience treating the disorder.

Having said that, I strongly urge you to also cover as many posts on this forum as you can to glean all the information possible about what has or has not worked for us. Some of us have seen quite a remarkable "recovery" using the VED, others have seen success with the "chemical" treatment and others various treatments. Lastly, some have seen no help whatsoever, so what your outcome will be most likely depends on what you decide to do with your personal situation and how it works for you.

We are here for you in any way possible, so feel free to ask any and all questions you have. I am sure that you will receive the best answers we can find for you. Good luck, but lastly, just hang in there. Some of us have been down this road for over 50 years.

Old Man
Title: My situation.
Post by: SombreSoul on January 20, 2008, 12:07:07 AM
Greetings all,

Well since having a downward bend since i was 12 (i'm now 33) i finally worked up the courage to speak to a doctor. He had a quick examination and then told me that everything is fine. He didnt believe it was Peyronies or Chordee. He believes i have a natural bend that developed when testosterone kicked in. He said there are lots of men with natural bends ("banana bend" as he called it). I dont have a hard plaque lump on my penis and never any pain and because it bends downwards he doubted it being Peyronies as he said in most cases Peyronies causes a bend to either side - not downwards.

In any case he has referred me to a urologist for a secong opinion and feels strongly that the urologist will say the same thing.

But another concern is that i have a tight foreskin which wont retract over the head of my penis. He said a urologist will stretch my foreskin while i'm asleep. Has anyone here had that done??

Also, i finally told my partner (who i had been avoiding having sex with) of 10 months about my problem and she was fine about it. Totally fine, and in fact it brought us even closer! Anyway, i worry about how i will perform during sex having a downward bend. There will be some positions that i dont think will work. Can any guys on this forum that have a downward bend tell me if it is a hindrance to either you or your partner during sex? Can you perform just as easily as if you had a straight penis?

Thank you all for your time, TOP FORUM!!!!

-SS.
Title: Re: Banana Curve
Post by: Old Man on January 20, 2008, 09:37:42 AM
SS:

If your doctor stated you really have what is called a banana curve, you have nothing to worry. However, since the foreskin won't retract over the head, you might be in for a problem with hygene since the head portion should be cleaned often to prevent infection and other problems.

When you see the urologist, make sure that he/she understands about the retraction problem. There are many ways to "cure" that problem and not be a bother with sexual activity. Most boys by the time they reach puberty have had the forskin retracted by one means or another. In the old days, older boys and young men in the family took care of this for the younger guys. They simply just pulled the foreskin back over the head before it became a problem. I know this sounds gross, but it did work (I am talking the 1930s here, so don't gross out on me) and they always used some kind of antiseptic to help with healing if any was needed.

Bottom line here, that you seem to have a normal congenital curve and a whole lot of guys have with no problems. Sexual activity will have a way of finding its proper course. You and your partner just have to do the trial and error method to find a position that work for you. And, there are many and various positions that can and will work.

Old Man 
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: nemo on January 20, 2008, 03:12:25 PM
Gents, I had a bout of Peyronie's about 7 years ago that left an interseptal lesion that gives me some distal softness.  A couple weeks ago, I was having sex and after several rounds, I was going at it with a 3/4 erection, got into a bend, felt a little pain and immediately backed off.  I've felt this pain before sometimes when I'd slip out and jam the penis, etc. and it never causes any further problems, but of course I always monitor for several days after seeing if I have a nodule or anything.

A few days ago, I notices a slight indentation on the bottom side my penis, right corpus.  It's soft and only a mild indentation - honestly, it may have been there for years and I've never noticed, because it's a part of my penis I don't normally pay much attention to.  I don't have any pain, can't feel any nodule or hardening and the indent is only palpable when I'm hard.

I guess my question is, since this indentation is not interfering with my erections and doesn't seem to be accompanied by pain, a plaque or any bending, etc., can I feel pretty safe that it's not a full blown reoccurance of inflamatory Peyronie's (assuming that it's even a new indentation, not something I've had for a while)?

Do these indents typically cause problems?

Thanks,
Nemo
Title: Re: Indentation
Post by: Old Man on January 20, 2008, 03:28:40 PM
Nemo:

Most of us at one time or another see slight indentations on their penis shaft. However, since you noticed this shortly after a bad sexual encounter, it bears watching very closely. If you should develop pain in this area, by all means get professional help ASAP.

I have had these happen all of a sudden and then go away just as quickly. It always caused concern due to my long history with Peyronies Disease. As I said above, just do watchful waiting and again, don't hesitate to get help if you develop pain in that area during or after sex as well as at any other time.

Old Man....
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: fade2black87 on January 22, 2008, 08:35:17 PM
Please help me guys. I'm very scared. I have 2 questions for you while i'm trying to understand this whole thing (you will probably see many more long and detailed posts but ill try to keep this one short).


1. I have an area at the very base of my penis that is a spot that has possibly seen recurring trauma n the past. I am very skinny and have a "stand up penis do to congenital curvature but throughout the years I have felt pain from bending it down from when I was younger and didn't really see it as possibly causing injury. I know that tests car be performed (x-rays, ultrasounds, etc) to check for plaques, but this area is so close to the pubic bone that I worry that it might not be able to be checked in a normal test because of its location. I.E. the plaque is affecting the part of the penis that is more inside the body than outside.  Is there a way to perform these tests, maybe from the underside of the penis where there is no pubic bone to get in the way? I ask this because I can feel the part of the penis that I believe to be injured because there is no pubic bone and it is still in front of my scrotum, but I cannot feel that same area on the top because of the pubic bone. The area in question would be about 3 years into the disease if it is present so would any of these tests show a problem if there was one?

2. I have read a great deal about this problem over a period of time and I have come to a big question. I understand that this disease can be brought on by: 1. an autoimmune problem 2. Heredity 3. Repeated trauma. Now here is my question. If repeated trauma is the cause, is there an autoimmune response along with the trauma that causes the problem, or can ONLY repeated trauma cause the problem. I was under the impression that  that the only way that scar tissue could expand and take over healthy tissue would be though an autoimmune response, but then I thought about cirrhosis of the liver. Correct me if I'm wrong, but that can be caused ONLY by injury to the liver from alcohol.  Is that correct? I ask this question, because I figure that though blood tests the body can be checked for immune system problem, and can be a big indicator as for as determining if I may have peyronies, but if this fibrosis is just brought on by injury, I don't see a way to test for it.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: nemo on January 22, 2008, 08:56:35 PM
Hi and welcome.  You don't say what your symptoms are other than you feel something there.  Is there bending, pain, diminished erection, or anything like that?

Nemo
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: fade2black87 on January 22, 2008, 09:28:23 PM
Thanks for the welcome! I do have bending and tenderness in the spot in question. The only problem is that I have had bending and tenderness in the location for as long as i can remember. But here is my big point. I dont think I have peyronies disease because i have the bending and tenderness there because i have always had it. I am worried because I have had repeated bending with pain there over a period of years during masturbation, peeing with a morning erection, etc.So basically, unlike many people on the site, I'm not really trying to figure out treatments or duration time. I'm really trying to figure out if I have peyonies disease. It really scares be because it is in an area that i cannot feel.  My fear is that if i monitor it and dont see a change, I could just be in a stable state and the disease could reactivate later in my life because im not EXACTLY sure how high it bent when i was younger and not worried about it. I'm really just trying to figure out if there are any tests that can see that far back, so i can have it checked (along with my part 2 question). Thanks for the quick response
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: nemo on January 22, 2008, 09:46:37 PM
Well, I'm still a little confused ... am I correct that you're saying your penis points up when erect (maybe even against your belly) but when you move it forward, like you would do to insert it during sex, it hurts? 

Regardless, I think showing exactly what you're talking about to a Urologist is really the only way to go.  It's going to be hard for any of us on this board to visualize exactly what you're describing. 

Sorry I can't offer more.

Nemo 
Title: Re: Fade2black
Post by: Hawk on January 22, 2008, 10:42:20 PM
Fade2black,

Welcome to the PDS forum.

F2B, this is not an occasion to be scared to death.  it is not even clear what you are scared of, or why.  I often find that by reducing a post to the essential elements that I can get to the issue a person is trying to communicate.  In your case it did not work.  Read the key statements from your post

Quote from: fade2black87 on January 22, 2008, 08:35:17 PM
1. I have an area at the very base of my penis that is a spot that has possibly seen recurring trauma n the past...I have felt pain from bending it down from when I was younger... I ask this because I can feel the part of the penis that I believe to be injured because there is no pubic bone and it is still in front of my scrotum, but I cannot feel that same area on the top because of the pubic bone.

All I get from this is your think that you may have penile injury in the area at the very base, near the scrotum.  You mention no negative symptoms other than a pain when bending it down that has been there since youth.  There is nothing in these statements to suggest you have Peyronies Disease.

The second part of your question has some misunderstanding in it but it makes no sense at this point to go off on those issues until we resolve question #1.

What are your Peyronie's-like sympotoms that even make you even suspect you have Peyronies Disease?  Have you been to a urologist?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on January 22, 2008, 10:43:53 PM
Go to a doctor and get checked. It sounds like you have a more dorsal than usual orientation and that it is possible that a relaxing incision to your ligament would allow your penis to stock out more at right angles from the body. But you need to show a doctor what you mean and then, after that, why don't you worry - or perhaps end all worrying?

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: fade2black87 on January 22, 2008, 11:14:16 PM
I'm sorry for the confusion guys. I think trying to put too much info in one post made it very difficult to understand. Let me start over and try again. I am so happy to have found this forum, that i dont want to waste my chance for some help because of an unclear post.

I am 20 years old. For as long as I can remeber my penis has stood straight up against my chest. I feel this is from a combination of sleeping on my stomach for 17 years, and the use of tight briefs. Around the age of 16-17 (maybe younger) during masturbation, urinating in the mornings. I would force my erections down, and feel pain. Sometimes the pain would go way immediately. Other times it would linger until I lost my erection. The pain is on the top of my penis extremely close to or under the pubic bone. it is not quite 90 degrees but think of a 90 degree angle and the very middle point where the 2 straight lines meet is the public bone. I never really saw this as a problem until I read about peyronies online. This was in Dec. of 04.

I am currently 20 years old. Since I am now aware of my limits, I am able to have painless sex with my girlfriend, and avoid the pain from my teenage years on a daily basis for the most part, unless my erection gets forced down for some reason.

I have become very aware of the angle of my penis these days, and the pain that can occur if pushed down. To me it seems that it is both at a higher angle, and more tender, but it was so long ago it is just hard to remember. If this is the case i would attribute this to the years of repetitive bending and light pain.

I first went through a phase of thinking "well I cant really feel around that area on my penis. I really hope i dont have peyronies, but if i do have a mild form of it I'll just wait the prescribed 18 months and if its seems to be stable then I'm good to go". But in reality this doesnt seem to be the case. It seems that it can be dormant for years, then reactivate when it feels like it.

Then I thought " Well even though i put my penis through years of mild trauma, all the sites say that there is a autoimmune problem that most occur ALONG with the repeated trauma so the chances are somewhat unlikely." But even that doesnt seem to be the case. Many sources seem to say that repeated trauma by itself can lead to peyronies.

So this leaves me in a bad place. I think there is a mild change in the angle and tenderness of my erection. I can't feel the area that i think is affected to check for plaques because my pubic bone meets right in the area that my penis bends up. I can't just wait it out because if it is there it could reactivate later on. And the big thing is that I caused mild repeated trauma over a period of years.

So from this, with the vast knowledge that is available here, Is there a way for me to be sure that I am in the clear or not? I just want to find out if there is a test that can be done to examine this area, or anything of that nature.

Hawk -
I was talking about the bottom of the penis because if you look at the anatomy of the penis, you can feel farther back towards the base on the underside of the shaft than you can on the the top because of the pubic bone. So i didnt know if maybe an ultrasound (or something) could be preformed there to check for a plaque what would be present on the top of the shaft (looking trought the penis from the bottom to the top).

I also wanted to really get a personal opinion on whether or not repeated trauma alone can cause peyronies, or does it have to be paired with an autoimmune problem?

There are many websites that make it out to seem that just a repetitive trauma is the cause:

"Injury to the penis. Trauma to the penis from being hit or bent abnormally while erect or during intercourse may cause small tears in the tissue. It may also cause small blood vessels in the penis to rupture and bleed internally. Abnormal healing can result in the development of hard, thickened scar tissue (plaque) under the skin of the penis. With repetitive trauma, the plaque may develop tough fibrous tissue (fibrosis) or calcium deposits (calcification) and result in the deformity."

But others are very conflicting and say that it is paired with an autoimmune problem.


I am very confused with all of the conflicting info I really just need some hard facts. What do you guys think about all of this?


Title: F2B's worries
Post by: Steve on January 23, 2008, 08:27:27 AM
Fade2Black,

Using Hawk's condensation:
QuoteSo from this, with the vast knowledge that is available here, Is there a way for me to be sure that I am in the clear or not? I just want to find out if there is a test that can be done to examine this area, or anything of that nature.
I think that the best suggestion you'll ever get is the one from Tim:
QuoteGo to a doctor and get checked.
No one here can see what you can see or feel what you can feel.  Get yourself to a good Uro and explain to him all your symptoms and concerns.  He'll know what can and can't be done to determine if you really have Peyronies Disease or some other condition.
We're all here for you with suggestions, advise, and a sympathetic (most of the time) ear to hear your concerns, but there is no substitute for a good exam from a good Uro!

Steve
Title: F2B:
Post by: Hawk on January 23, 2008, 09:35:19 AM
F2B,

No one knows what factors it takes, in what combination, and in what quantity, to result in Peyronies Disease.  Conversely we don't know what combination is safe from Peyronies Disease.  It is suspected that trauma, from repeated micro trauma to one severe incident of trauma can trigger Peyronies Disease if other unknown conditions exist.  These unknown conditions may include genetic factors.  The genetic factors my be autoimmune in nature.  Saying these factors are genetic or autoimmune in nature does not fine tune our understanding very much.  It could be that things like transforming growth factor - beta1 (TGF-B1), or advanced glycation end products (AGE) are a result of these genetics, or maybe they a component in addition to some other unknown genetic factor.  It may be that some cases have no genetic factor.  To make things worse,  the majority of men with Peyronies Disease report no perceived injury.  This means the "micro trauma" is very micro, or injury is not even necessary if the other unknown components are present to a strong degree.

There are dozens if not hundreds of auto-immune conditions and they are not known to share a common mechanism (arthritis, lupus, psoriasis,asthma).  This means there is currently no "auto-immune" test.

Thankfully, none of the above information is essential for you to know.

You are correct that there is a wealth of wisdom on this forum, but it is not in the form of having Peyronies Disease figured out.  It exists in the form of sharing things that sometimes seem to work and that often don't.  It is in the form of coping with the results of Peyronies Disease, and it is in the forum of knowing how to guide those affected on their journey.  So far your journey has been

worry
read forums
try to break the centuries-old code of understanding Peyronies Disease
worry more
_______________________________________________________________________________

The journey starts with a concern
the next step is to find a good urologist and make an appointment
next write down your very clear history in a brief concise style (get rid of all unessential information)
then write down your questions
Go to the doctor with a clipboard in your hand.
while there, take notes or take a trusted person to take notes while you verbally communicate
Let us know what the urologist says

Good luck my friend

Hawk
PS: Your penis angle has nothing to do with the briefs you wore or sleeping on your stomach.  it is likely as hereditary as the angle of your ears and the shape of your nose.
Title: Hawk's reply to F2B
Post by: Steve on January 23, 2008, 11:06:46 AM
Hawk,

Great post!  I think it should be included (removing the direct references to F2B) in the Newly Diagnosed board...It's a great starting point for those who are just joining us on this merry voyage.

Steve
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on January 23, 2008, 11:23:12 AM
Dear FTB,

After clarifying, it seems more likely than ever to me that you are normal. You described the normal discomfort that occurs when an erect penis is pushed downward. The pain comes from applying stress to the Fundiform and Suspensory ligaments. Those ligaments help keep your erection pointing north when it is erect. It's normal for it to hurt when you apply a stretch to them. If the "angle of your dangle" is close to sticking straight up against your belly, then bending it out at right angles to your body will hurt. Mine points up at an about 60 degree angle, and it hurts me to bend it downward to about 120.

It's normal.

Normal.

Normal.

Tim
Title: Re: Steve
Post by: Hawk on January 23, 2008, 06:06:09 PM
Thanks for the thumbs-up Steve.

It was one of those posts that actually struck me in a clear new way as I was typing it.  There is so much we don't know and that is interesting and worthwhile to try to figure out after we do the basics. Nothing can substitute for the basics however.

As far as preserving the post on the "Newly Diagnosed " board, I leave the call of what to include there to others.  It is more than I can figure out or be objective about.  There are great people here to keep me objective and I have a a deep sense of appreciation for them.  Angus has single-handedly built and shaped the "Newly Diagnosed" board.  I seldom put anything there and very seldom to never put anything of my own there. 

Thankfully I don't have to make all the decisions or do all the work or the forum would be far less than it is.

Hawk
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: fade2black87 on January 23, 2008, 07:14:33 PM
I really appreciate the help, hawk, steve, tim, others. I'm so happy I found the forum.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: fade2black87 on January 25, 2008, 09:15:35 AM
I know each case is different, but when peyronies stabilizes for a period and then recurs or recactivates a couple years later, is that usually a  development of a new plaque, or can one plaque stabilize and then suddenly start up again without reinjury, etc? It would seem to me that one plaque would run its course and then calcify. What does you guys think?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: pal-31 on January 25, 2008, 10:11:44 AM
Fade2Black,

I think you said it right, every case is different. It probably depends on the location of the injury if that was cause. The trouble is no one knows for sure what is the cause of the peyronies in the first place. We know an injury usually starts it , but I dont think we know why some heal and some dont. Autoimune disease is most likely the curprit.

You will probably find many people's plaque becomes connected feeling like a string that runs through the whole shaft.

Good questions !

Regards,
Pal


Title: Libido,Peyronies Disease,ED & BPH
Post by: TriHit on February 08, 2008, 06:59:33 PM
I have a number of questions:

First my history:

I experienced some difficulty in nighttime urine release 3 years ago at the age of 64, was found to have elevated PSA, and following a negative prostate biopsy diagnosed with BPH, prescribed PROSCAR and put on 6 month PSA monitoring for "Carcinoma of the Prostate".  Subsequent PSA readings declined and I am now on annual monitoring. 

9 months ago, after 2 years on Proscar, I experienced pain in the tip of my penis during nocturnal erections, which then resulted in loss of erection during intercourse which had been normal up until that time. I immediately ceased the Proscar, but within 3 months a detectable growing lump at the base of the glans resulted in an increasing upward penile curve (almost a right angle now), and during my annual monitoring, this was confirmed by physical exam as Peyronies Disease or "Vasculitis".

The bigger problem to me is that all this was accompanied by a loss of libido or sexual urge that continues to this day, and while I still experience nocturnal erections and can achieve an erection without pain, it is insufficient for intercourse (perhaps because the bend destroys the structural integrity, and the contraction has shortened the length) and it lasts only a few minutes.

I have been hoping that the loss of libido would self correct after the effects of the Proscar wore off, but this has not yet happened and as an active energetic person there appears to be no testosterone problem. 

So I have 3 questions...

1. While I would expect at 67 to see a decrease in libido, mine was a sudden loss for which I would like to understand the reason. Is it the BPH, Proscar, Peyronies Disease, age and what can I do to trigger it again.

2. While I understand the scar tissue aspect of Peyronies Disease and its effect on maintaining erections, I do not understand how, and have been unable to find any description of how this can impact libido.

3. while I understand that Viagra can assist with the maintenance of an erection, I again can find no reference to its ability to increase my libido. What's the point of erections and intercourse if there is no climax. Seems like eating chocolate after you loose your sense of taste.

4. I recently noted a warning with Cyalis that it should not be used if one has Peyronies Disease, so now I wonder at the safety of that.

So I appreciate some feedback from other Peyronies Disease'ers...

Did you lose libido/urge after getting Peyronies Disease, or has yours stayed normal?

If you were on Proscar/Finiseride/Propecia when libido reduced, has it returned?

Did Viagra help restore libido as well as help maintaining of erections?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: nemo on February 08, 2008, 08:19:53 PM
TriHit, I'll try to answer the questions I can.

Viagra, Cialis, Levitra all carry warnings about use with Peyronie's, but that's largely overlooked by doctors as the thought is, a more rigid erection is LESS likely to be injured. So, there's no worry, so long as your doctor agrees. 

However, neither of these drugs affect libidio, only the function of erection.  You may not feel the desire for sex any more on them, but if the proper sexual stimulation is offered, you may very well get erect regardless.  It'll still feel good and you'll likely orgasm, etc. But taking one of these pills isn't going to make you "horny" per se. 

I was on Propecia for a couple years and did notice ED problems, so I got off.  My function returned to normal in a few weeks. However, with Proscar, you're taking a larger dose of Finasteride than I was with Propecia (same thing though), so it may indeed take longer to get back to where you were before the Proscar.

Peyronie's, itself, wouldn't have any affect on libido, as it's simply a scarring disorder of the penile tissue.  However, I can totally understand Peyronie's causing a psychological drop in libido, as painful erections, disfigurement, etc. can be a psychological deterrent to being "in the mood."  If you are worried about libido, your doc can do a testosterone test of your blood - that would tell you if hormones may have dropped on you.

Personally, I don't think you have anything to lose trying Viagra (if your doc agrees).  I wish you the best and hope this info has been helpful to you.

Nemo
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on February 08, 2008, 09:16:13 PM
TriHit
All of the drugs for BPH (Enlarged Prostate) caused me problems similar to yours.
Started researching Saw Palmetto and wife would not let me take it without talking to Uro. He said "Jack that is great stuff, I take it too. Just get a good quality like GNC."
I went to GNC and bought a bottle of 160 mg caps and started twice a day and stopped all the prescription drug for BPH. About 6 months later Dr did a TURP and now 12 years later still no BPH and still take Saw Palmetto.
I think every male over 40 should take it. I have friends that I have recommended this to and they had the same result.
For Libido have your Testestorone checked. Should be in the upper 1/4 of your labs range. Just because it may come back normal does not mean that it is low for you. But that is another subject.
Jackp
Title: TriHit
Post by: bodoo2u on February 08, 2008, 09:29:57 PM
Are you telling me that your doctor said Peyronies Disease and Vasculitis are the same disease? I had a relative with vasculitis and it was not the way I would want to end up. Of course, no one does.
Title: Re: TriHit, Nemo
Post by: Hawk on February 08, 2008, 10:54:23 PM
TriHit,

Welcome to the forum.

TriHit,  I too am puzzled by
Quote from: TriHithis was confirmed by physical exam as Peyronies Disease or "Vasculitis".

They are clearly not the same thing and can not be used interchangeably or grouped as related conditions.

Nemo, I will tell you and TriHit that you gave a excellent well written response to TriHits many questions.

Hawk
Title: TriHit
Post by: Kimo on February 09, 2008, 12:47:16 AM
TriHit,,,have your testosterone checked it may have dropped low..I went through the same thing..I had no Libido until we got my testoserone levels back up. My levels started dropping when in my mid to late 40's and was 10yrs before i found a URO who would help me....After on the testosterone for a couple of months,,my libido started coming back up,,after a year i had ask the doc to bring it down a little..It went to high and was driving me nuts,,was hornier than when i was 20 and then it was high.....

Keep in touch and let us know how your tests come out.......kimo
Title: Re: Testosterone ...
Post by: George999 on February 09, 2008, 03:34:21 PM
Also be aware that if one's Testosterone levels are "OK", there ARE supplements that have the effect of boosting Libido.  Such things as Maca for example and perhaps things like Tribulus as well.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: nemo on February 09, 2008, 07:11:16 PM
Yes, and it's hard to find a doctor who "believes" in testosterone replacement, at least in my experience.  When I became concerned about ED I had my Uro test my T and it came back 235 (scale of 250-1100).  He said, "it's just slightly low, I don't think it's anything to worry about and you don't want to mess with testosterone - you'll be on it the rest of your life."  Well, I get no nocturnal or morning erections, but he still wasn't motivated to act.  So I went to an Endocrinologist who sounded like (based on that first test), she was considering replacement therapy but wanted me to get a second test.  This one came back 434, which on a scale of 250-1100 sounds fine right?  So she decided not to do anything because I was "normal."

But I'm only 36, and I've got a feeling my T should be much higher than even 434.  I asked the Endo if 434 was "optimal" for a 36 year old, and she said, "You can always get a second opinion, testosterone is very subjective." At some point, I'm going to have a third test to see where it is in a month or so.  If it's 434 or lower I'm definitely going to pursue replacement with a doctor who specializes in hormone therapy.  I've heard too many good things about positive effects guys experience (not just in ED but in quality of life) ... I'm not ready to discount the testosterone just because one test fell in the "normal" range.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Kimo on February 09, 2008, 10:13:40 PM
Nemo,,,my first URO, many yrs ago said the same thing,,,,,your T level is just normal for your age and he would not do anything about it,,,my energy was very low and i had no libido,,was depressed  and so on. Then i changed to a younger URO and he said, yes your low and we can fix it and he did...After being on T for a few months i never felt so good and my energy was way back up ...So, go get it tested again and get on it.Also,,,my new URO never said that i would be hooked on it the rest of my life,,,and guess what, i haven't been on it now for about 2 yrs ,,and i know i'm low,,,but i'm doing pretty good and still horny...I do have to take viagra for a good hard tho,,but oh well, i don't mind...

Take care of your self, get another opinion,,,,,,kimo
Title: Re: John28 - Blood Pressure Meds ...
Post by: John28 on February 14, 2008, 03:59:09 PM
Hi guys

My doctor's considering prescribing blood pressure medication, and I've seen several reports linking certain types (especially beta blockers) to Peyronie's. Several Peyronie's studies I've read recorded the proportion of participants on such medications at outset along with other risk factors such as diabetes.

I realise the link is unsubstantiated, but in the interests of risk management I'd be very grateful if anyone with experience or knowledge in this area could provide any more detail on it. It would be good to know which ones to avoid and which to go for.

Thanks

PS. Hawk - apologies if this is under the wrong topic heading. Liam - thanks for the welcome last time I posted.

Title: Re: John28 - Blood Pressure Meds ...
Post by: George999 on February 14, 2008, 08:42:05 PM
1)  If you look at any comprehensive drug fact sheet on any type of beta blocker, you will see Peyronies listed as a POSSIBLE side effect.  This is actually pretty well documented.  It is also becoming quite well known that beta blockers CAN elevate serum glucose levels, and in fact, they are now being suspected of instigating diabetes.  I have been on them before (like when I developed Peyronies >:() and there is absolutely NO WAY I would recommend beta blockers for ANYONE except as a last resort or in a case where they are PROFOUNDLY indicated.

2)  There are two distinct types of essential hypertension.  The first, and most common is "high renin" hypertension which is the most common type among white folks.  The second is "low renin" hypertension which is the most common type among black folks.  The term "renin" refers to a substance also known as angiotensinogenase which your kidneys tend to dump into the bloodstream when they are stressed.  In the case of "low renin" hypertension, the renin levels are usually virtually normal and it is another substance, aldosterone, which is causing the hypertension.  There are other more obscure situations involving cortisol and abnormalities with the cortisone-cortisol shuttle and other weird things that can aggravate and intensify hypertension problems.

3)  For those with "high renin" hypertension, the cat's meow, as they say, in my book is Cozaar.  Its expensive, but it is effective not only in lowering blood pressure, but also in lowering the rate of complications resulting from hypertension.  Among other things, it inhibits TGF-beta-1 which results in significant tissue protection.  I AM NOT A DOCTOR.  I speak only as a former hypertension patient.  As such, I HIGHLY recommend it as a first choice.  Its pricey, because it has a few more years to go before it becomes generic.  But its the best pill on the market for "high renin" hypertension by a mile that can be had for a reasonable price.  And in not only won't cause Peyronies, it actually might help it to get better!  And it is an Angiotensin Receptor Blocker with LOW side effect rates.

4)  For those with "low renin" hypertension which is primarily driven by sodium issues, the good old generic diuretic or water pill is the best shot.   Its cheap, its effective, and it will neither cause nor exacerbate Peyronies.  Again, I AM NOT A DOCTOR.  But I have taken a diuretic before too.  And this too has fairly low level of side effects.

With both of the above one should be real careful with Potassium.  Both tend to increase the body's retention of Potassium so Potassium supplements need to be taken with great care.  John, I wish you the best on this.  - George

PS - These posts probably need to go under the thread "Open Questions".
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on February 15, 2008, 03:47:10 AM
Georeg999
John28
Greetings John Glad that you are here. There is a wealth of information that can not be found anywhere else. These gentlemen are very supportive and always helpful.
George
I was on beta blockers for my hi blood pressure when I developed Peronies. This post just caused it to click in my mind.
The other side effect of beta blockers was to cause weak erections. It took me a couple of Dr.s to get me to something that worked without all the side effects. For me that was Altace and Spironolactone. When I was in the hospital last July heart dr. put me back on beta blocker and again I did not like the way they made me feel and went back to my Altace and Spironolactone. Keeps my BP at 118/76 normally.
Glad for the information now I know where my Peonies came from.
Jackp
Title: Re: Open Questions on Peyronies Disease (Beta Blockers and Peyronies)
Post by: Ptolemy on February 15, 2008, 05:33:43 AM
Can you point to links on this relationship? Also, does this apply to any Beta Blocker? I was on Tenormin for 20 years and am now on Coreg Cr (1 year), both Beta Blockers. Clearly my Peyronies was caused by an injury however, I was concerned about the relationship between Beta Blockers and Peyronies referred to by PDLabs.net when I tried Verapamil and how it might effect my recovery. I asked my cardio if I could get off the Beta Blocker and his response was a definite "no."

The relationship does not seem clear from my Google searches.
Title: Re: Jack ...
Post by: George999 on February 15, 2008, 11:08:16 AM
Jack, Thanks for your post!  Altace and Spironolactone are both really good drugs.  Altace is an ACE inhibitor which intercepts the Renin cascade to prevent it from causing BP to rise.  ACE inhibitors are associated with most of the same good outcomes that ARB's are.  The one reason that ARB's are a bit superior is that ACE inhibitors can have a rare side effect associated with a chronic cough and the fact that ARB's additionally inhibit the activity of TGF-beta-1.  But ACE inhibitors are much more cost effective than ARB's and most people do very well on them.  I was taking Lisinopril, which is also an ACE inhibitor, for years.  It was a very good drug for me and it did an outstanding job of controlling my BP.  Spironolactone is an Aldosterone Antagonist and is administered to blunt the effects of excessive Aldosterone.  It is also believed by some to be effective in controlling the potential hypertensive effects of Cortisol in the event that the body's Cortisol-Cortisone shuttle is not performing normally.  Most docs refuse to prescribe it because they are concerned about its potential anti-androgenic side effects (hormonal issues) and its potential to upset the body's potassium balance, but obviously you have a doc who is comfortable with it and I am glad to hear that it is working for you.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on February 15, 2008, 11:29:05 AM
Ptolemy
My heart Dr. tried to get me back on beta blockers last year I tried it for a month and it did not control my blood pressure like Altace did.
I went back to my PCP and he put me back on Altace and I informed my heart Dr. that I switched back. His nurse said OK but he prefers beta blockers. I asked which was best beta blocker that made me wheeze and not control my BP or Altace that did. I got my point across.
Dr.'s sometimes get stuck on a routine and when it does not work for us we have to stand up by letting them know there routine did not work for us. Do it in a non confrontational way with just facts.
Jackp
Title: Re: Ptolemy ...
Post by: George999 on February 15, 2008, 11:33:46 AM
Links:

Quote from: University of Washington, Department of UrologyDiseases & Conditions
Peyronie's Disease

Authors: Hunter Wessells, MD
Last updated: November 21, 2005

Risk Factors

A number of variables have been associated with a higher likelihood of Peyronie's Disease amongst population of men. These include a history of Dupuytren's Contractions of the tendons of the palms of the hand, use of beta-blocker drug therapy, and hypertension. None of these associations have been clearly determined to have a causal relationship with Peyronie's Disease however.

http://depts.washington.edu/uroweb/ptcare/diseases/peyronies.html (http://depts.washington.edu/uroweb/ptcare/diseases/peyronies.html)

Quote from: RXList.comDuring postmarketing experience with TENORMIN, the following have been reported in temporal relationship to the use of the drug: elevated liver enzymes and/or bilirubin, hallucinations, headache, impotence, Peyronie's disease, postural hypotension which may be associated with syncope, psoriasiform rash or exacerbation of psoriasis, psychoses, purpura, reversible alopecia, thrombocytopenia, visual disturbance, sick sinus syndrome, and dry mouth. TENORMIN, like other beta blockers, has been associated with the development of antinuclear antibodies (ANA), lupus syndrome, and Raynaud's phenomenon.

http://www.rxlist.com/cgi/generic/atenolol_ad.htm (http://www.rxlist.com/cgi/generic/atenolol_ad.htm)

I could point to many more links, but most docs who are intransigent on issues like this likely would not be satisfied with any number of links.  The bottom line is that they think that when you have a problem like hypertension, everything else is secondary and you shouldn't be worried about your Penis when your Heart is at risk.  Beta blockers are cheap and have been shown to be uniquely protective of the heart.  Thats why they are used for things like heart failure and other esoteric problems.  In some cases one simply has no choice due to the complexity of the issues with the heart.  But a lot of docs just like Beta-Blockers.  What more can I say?  What does it take to establish a "clear" relationship and how "clear" does the relationship have to become before we acknowledge it?

I would also like to make another point.  That is this.  Injuries DO NOT cause Peyronies.  Lots of men have injuries to their penises and DO NOT end up with Peyronies.  Injuries actually TRIGGER Peyronies and the cause of that effect is a failure of the natural healing process.  This is like the relationship between injuries elsewhere to the body and scarring.  Lots of people have truly traumatic injuries and experience little scarring as a result.  Others come away from very minor injuries with disfiguring scars.  The root cause of all of this is actually metabolic.  And this is where Beta-Blockers come in.  They tweak your metabolism in ways that are not healthy.  In fact if you look at the drug fact sheet for Coreg CR you will find references to the fact that it can affect your serum glucose and that if you are diabetic you might have to adjust your medication.  Thus its metabolic effects go far beyond its benefits for your heart.

If you are on the Beta-Blocker for hypertension, you should EASILY be able to find a drop in replacement drug without the nasty side effects.  BUT, if you are on the Beta-Blocker for heart failure type issues, you may be in a tight spot since there simply aren't many choices out there when it comes to heart failure.  So it would help to know just what you are taking the Beta-Blocker for.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Ptolemy on February 15, 2008, 03:41:54 PM
George999 and jackp, great responses, much appreciated.

QuoteInjuries DO NOT cause Peyronies.  Lots of men have injuries to their penises and DO NOT end up with Peyronies.  Injuries actually TRIGGER Peyronies and the cause of that effect is a failure of the natural healing process.

I agree. My injury should have healed. Who knows what would have happened if I was not on Tenormin at the time.

Unfortunately I have mild cardiomyopathy and don't want to get to heart failure. I have also had arrhythmia all my life but no symptoms - was very active in sports and have run full marathons. So it is the combination of high blood pressure and the rest that the doctor insists I stay on Coreg Cr.

I hit age 61 and I guess most doctors feel my sex life is behind me. However, I don't feel that way at all.
Title: Re: Cardiomyopathy and Arrhythmia
Post by: George999 on February 15, 2008, 06:11:39 PM
Ptolemy,

In regards to Cardiomyopathy, I suggest you read this:

Quote from: University of WashingtonINTRODUCTION TO COENZYME Q10
By PETER H. LANGSJOEN, M.D., F.A.C.C.

CoQ10 was given orally in divided doses as a dry tablet chewed with a fat containing food or an oil based gel cap swallowed at mealtime. Heart function, as indicated by the fraction of blood pumped out of the heart with each beat (the ejection fraction), showed a gradual and sustained improvement in tempo with a gradual and sustained improvement in patients' symptoms of fatigue, dyspnea, chest pain, and palpitations. The degree of improvement was occasionally dramatic with some patients developing a normal heart size and function on CoQ10 alone. Most of these dramatic cases were patients who began CoQ10 shortly after the onset of congestive heart failure. Patients with more established disease frequently showed clear improvement but not a return to normal heart size and function. ... The efficacy and safety of CoQ10 in the treatment of congestive heart failure, whether related to primary cardiomyopathies or secondary forms of heart failure, appears to be well established (35,36,37,38,39, 40,41,42). The largest study to date is the Italian multicenter trial, by Baggio et al., involving 2664 patients with heart failure (43).

http://faculty.washington.edu/ely/coenzq10.html (http://faculty.washington.edu/ely/coenzq10.html)

Also I have found Aloe Vera to be a great cardio tonic.  My doc put me on Beta Blockers for my hypertension in part in an unsuccessful effort to stop my palpitations.  I ended up taking Aloe Vera Softgels which stopped them cold in 24hrs.

Here is what Aloe Vera is capable of:

Quote from: PubMedPrevention of atheromatous heart disease.

Five thousand patients of atheromatous heart disease, presented as angina pectoris, were studied over a period of five years. After adding the 'Husk of Isabgol' and 'aloe vera' (an indigenous plant known as ghee-guar-ka-paththa) to the diet, a marked reduction in total serum cholesterol, serum triglycerides, fasting and post prandial blood sugar level in diabetic patients, total lipids and also increase in HDL were noted. Simultaneously the clinical profile of these patients showed reduction in the frequency of anginal attacks and gradually, the drugs, like verapamil, nifedipine, beta-blockers and nitrates, were tapered. The patients, most benefitted, were diabetics (without adding any antidiabetic drug). The exact mechanism of the action of the above two substances is not known, but it appears, that probably they act by their high fibre contents. Both these substances need further evaluation. The most interesting aspect of the study was that no untoward side effect was noted and all the five thousand patients are surviving till date.

http://www.ncbi.nlm.nih.gov/pubmed/2864002?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum (http://www.ncbi.nlm.nih.gov/pubmed/2864002?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)


I wish you the best on this!

- George
Title: Re: Can't hardly ejaculate
Post by: not9inches on March 22, 2008, 08:37:45 AM
Hello Forum members. I haven't posted in awhile. I had a worsening condition that seems to have gone the course. At any rate, My bend has stopped about 50 % and still has good erection capability.  Back about 7 mos ago, i decided to get a vasectomy because with the bend in my penis it was rather difficult to use a condom. And sense my girlfriend was going to have to go off the pill, this was what i chose to do.  Well...it's been about 8 mos since the vasectomy and I am not able to produce more than a mere drop of semen during ejaculation and it just dribbles out. ( laugh here )  I don;t know if this is a cause of my peyronies or the vasectomy. It wasn;t like this for a couple of months after the vasectomy.  Any one Else have this problem?
Title: Re: Not9
Post by: Hawk on March 22, 2008, 08:57:56 AM
Not9,

I am not a doctor but I would strongly recommend that you see someone who is, specifically a urologist.  Do not be falsely comforted by someone else here having a similar condition.  I cannot imagine that either vasectomy or Peyronies Disease could cause a reduction in ejaculation.  The only way Peyronies Disease could do so is if your urethra were compromised by either your curve or directly by plaque on the underside  putting pressure against it.  A vasectomy only eliminates the sperm which is a very small part of semen. 

Often the symptoms you experience are caused by an enlarged prostate that is actually causing a condition known as retro ejaculation where the semen finds an easier path backwards into the bladder rather than out the exit through the prostate.  As a prostate enlarges it can sometimes squeeze the normal path for ejaculation and restrict it.  An enlarged prostate can be caused by either a benign condition or something much more serious.

There are other things that could be going on like reduced production of semen that could mean different things but this requires a good evaluation by a good urologist.

Men should not disregard such symptoms and just write-off everything that goes on with their male equipment as being caused by Peyronies Disease.



PS: Your age or dob is not in your profile but prostate issues are much more likely over 45 yrs old.  Also you say your bend stopped at 50% (percent).  Do you mean 50 degrees?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on March 22, 2008, 12:07:43 PM
not9
I do not know your age, but as we age our bodies change and reduced ejaculate is caused by many things.
In my case I had a Vas in 1972. Peronies in 1992 or 3. Did not notice reduced ejaculate until around 2000. I have been on hormone replacement (HRT) for 14 years, and had several cases of prostate infections (BPH) starting at age 35 (I'm 65 now). The meds for BPH had bad side effects for me. In 1994 I had a TURP for enlarged prostate. Because of the side effects or th4 BPH drugs I started Saw Palmetto and have not a bad case of infection science.
Last year my primary doctor (PCP) took over my low Testesterone. The uro was very Conservative and would only give me 400mg of T every 3 weeks. After 3 weeks my T level dropped to 120. PCP after a complete blood work for T said I needed 600mg of T every three weeks. It takes 2 shots to get that much T in so we went to 300mg every 10 days.
Al that to tell you now that my ejaculate level has increased a lot. Not like a teen but like mid 30's. Libido and feeling of well being have dramatically increased. Also increased my water intake did not realize that I was not getting enough water. This also helped.
I also understand that smoking, alcohol, and drugs can effect ejaculate.
Have you had a good work up with a Uro or PCP? If not that would be a good place to start. This story is only to tell you what hapend to me, like Hawk I am not a DR. on someone that has been there.
Don't get overly stressed about it. Have fun and enjoy  :).
My $0.02
Jackp
Title: Re: Not9
Post by: Mick on March 22, 2008, 03:53:23 PM
Not9:

Retro-ejaculation may also be caused by the drug Flomax, prescribed for enlarged prostate.  In my case, it caused all semen to go to the bladder.  There was still feeling to the ejaculation, but it was considerably weaker than normal.

Respy, Mick
Title: Retro-ejaculation and condoms
Post by: AR on March 22, 2008, 10:27:36 PM
Yeah, back in the mid 80's, before Prozac, I was put on an antidepressant that caused the 'retro' thing and let me tell you, it was for the short time I stayed on it, a real drag! Very painful, disturbing, etc. The Doc took me off right away. 
Then, funny enough, last year-one of the things that led to my realizing that something was going wrong with my penis, was indeed, my condoms would start slipping down to my new and developing hour-glass deformity. I was like, "why aren't my rubbers staying on?" What a drag. I'd just bought a huge supply!
AR
Title: Constant pain in genital area
Post by: lymeboy on April 10, 2008, 09:38:48 PM
I recently diagnosed myself with Peyronies Disease. I went to two urologists to confirm the dx.  One prescribed Potaba and toldme to check back in 6 months the other prescribed flomax to help the discomfort while urinating and general pain in genital area.  I have purchased a VED and experimented very gently for a few minutes.  I have so much pain in the region that I am reluctant to use the VED at this time. I also have chronic Lyme disease and the Lyme spyrochetes like to congregate at injury sites.  I do not know if my persistent, constant, and at times debillitating pain is a norm for P disease or a by product of having L disease.  I am curious if others experience this pain and what has been helpful.  I am not sexually active at all right now.

thanks for the responses and for this great resource
Lymeboy
ps--I am 56 y/o
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on April 11, 2008, 07:18:34 AM
Lymeboy
Potaba with 400 IU of Vitamin E 3 times a day helped me 12-14 years ago. After about 12-18 months the curve corrected, but left me 1.25" shorter and fibrosis in the corpora's.

Flomax and other prostate drugs made me feel bad and the ED worse. I quit the drugs and started Saw Palmetto and in just over 6 weeks no more prostate problems. Dr. recommended stay away from discount stores said to go to a reputable source like GNC. I have taking 180 mg twice a day from GNC for all these years now. Every time I have a DRE the doc says my prostate is normal size and feels fine.
The first DRE I had after being on Saw Palmetto for 6 months doctor was amazed at how much the prostate had shrunk and was back to normal size.
On the VED go to the VED topic and talk to Old Man. You can hurt yourself if not done properly. He has helped me a lot and I have gained back some size.
Good Luck
Jackp

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: lymeboy on April 11, 2008, 07:34:12 AM
Jackp,
  Thanks for the input.  I have the potaba but have not taken it due to lots of concerns and downsides.  The flomax perhaps helps some of the genital area pain but, I am feeling pretty awful in general.  I have not experienced ed in the past and am not too concerned in the moment as I am celibate--orgasm is too painful.  I did get imput from Oldman on use of the pump and was very gentle with my one usage.  The constant pain in the general genital area was present before, during, and after my pumping session.

Lymeboy
Title: Re: lymeboy ...
Post by: George999 on April 11, 2008, 03:55:45 PM
Lymeboy, You might want to give Mangosteen juice a try for the pain.  Best place to get it is Costco.  It is pretty effective at countering inflammation and you can take it along with other anti-inflammatories since it works by a different pathway.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Anonymous0 on April 13, 2008, 10:37:52 AM
hi, im new here. I have peyronie I think. Last year my penis made a loud crack sound when it was flaccid because it bended. And it felt like blood was running through like I popped a vessel or vein inside. And it felt warm and couldnt catch an erection. Then afterwards days later it was fine and i have been having these 3 things on the right side like bands. and they not elastic. i had pains there and was taking apples and it helped it go down a little and the pain go away. But it kep pesisting. And I have been taking Doctors best serrapeptase now and natures plus ultra maximum potency bromelain 1500. And it helps.  I dont get pains. But I dont know if its working or not as to attacking the actual scar tissue and diminishing it. Someone told me it does work but it takes time but but how long or how much time? And It seemed to go down alittle and now its like  its not and I think It may have grown back alittle again. The thing is its not like its outside . Its inside but If I catch an erection hard you can see the 3 of them on the right side.Although my tool had alighter curve before with peyronie and since I used serrapeptase and bromelain it straightened. Its almost 100% straight just like now a 5 degree curve which is practicly nothing.  I have to admit its hard taking these supplements because I am starting body building so I hav eto eat more times through out the day. And i am supposed to take these supplements away from food.  Which is harder to do now. I asked myfather if had any problems anything like the symptons I said and he said no. He never had anything like this in all his life.  I want to get rid of this now without harming my unit and size. I think I have to combine more different types of treatment if Ima have to get rid of it but have any of you guys had success what did you do?

Title: jamesdiego: Questions on ED & Peyronies Disease
Post by: jamesdiego on April 13, 2008, 01:01:09 PM
I have  Peyronie's disease ,Dupuytren's contracture and now i just noticed the arc of my foot having a growth..
I guess it is related it is called Ledderhose's disease.  I am not sure what started what but i was 55 , after a surgery that removed a growth on my face. I did not have ED but my erections were not as strong so i sought a solution. I looked to supplements. I found a series of supplements that pouted success in older males to strengthen the erections... after 6 weeks my shaft started looking like a hour glass . I got scared and went to a URO and found that i had Peyronies Disease. ( i had down a search actually and found out myself.. i went to the Uro to confirm.. He looked at my hand and that was enough for him to know that is what i had.

I blamed it on the supplements and the rough sex i had a few months ago with my then GF.
I stopped the supplements and found i still had week erections...

Now fast forward I am now 57 and i had started a work out schedule that got me in shape...
well during the workout process i started taking  L-Arginine. and other Amino Acids.
What i got was extremely hard and numerous erections... and the DP stopped hindering my sexual experiences... the only thing is after penetration it seems that during the movement it looses the hardness again and goes limp. I thought maybe it is the blood escaping . I am not sure  but when stimulated my my gf mouth it never looses the hardness.. but once i penetrate and move it goes soft after awhile...
can you tell me what the heck that is all about...


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on April 14, 2008, 07:50:40 PM
James
Go back to the urologist and have a color doppler of the penis. Loosing the erection during sex is a sign of Venous Leakage. That was the same problem I was having a few years ago.
As the Venous Leakage gets worse you will have to try other options.
Have a FT with the doctor.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jackisback on April 15, 2008, 06:38:08 AM
My question is this: could inadequate blood/oxygen flow during sleep contribute to Peyronies Disease? I have had increasing difficulty sleeping for the past 2 years. I often wake up in the night and take deep breaths because it feels like I am lacking oxygen. Usually, I must sit up to get the adequate amount of oxygen. I recently had a sleep study, but they said I wasn't having enough problems for further treatment, and will mail me the test results. (this SHOCKED me, i've had loads of breathing/sleeping for many years. I just called my mom, the letter was sent to their house. it sounds like they are saying they will have me in for an appt. i'm not sure she didn't have time to read it all, but maybe the woman on the phone told me wrong or something. i hope.). Anyways, I feel like this is contributing to my problem, and if not, then surely inadequate sleep is making this problem worse on its own, but really i feel this breathing while asleep could be the main factor. I also took propecia for 2 years.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jackisback on April 15, 2008, 06:42:03 AM
jackp -

i have heard repeatedly that it is toxic to take more than 400 IU of Vitamin E per day.  You are taking 1200. Is this a general consensus here that for guys like us the benefits outweigh the risk?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jackisback on April 15, 2008, 09:08:28 AM
Hmmm, I think I'd like to clarify my condition now that I think about it. I'm not even sure if I technically have Peyronie's, here's why. My penis does bend to the left when flaccid, when semi, and when erect...mostly. If I can get a "full" erection (which is a joke, it's not full, i still must hold up w/ hand usu. and it doesn't feel the same, but in the pics I took it doesn't look bad in terms of fullness) sometimes on the left side if you look at the edge of my erection, it's technically straight. But on the right side there's maybe a 20 degree curve to the left. The result is the head doesn't look very full. It's a bit difficult to explain though, is there a way to upload pictures on this message board for members to evaluate?

This has got to be the most depressing disease. I'm thinking of considering anti-depressants or something, but I'm afraid that will make it worse. For me aerobic exercise makes a huge difference in my erections I think. They're still not optimal, but a bit more reliable. I think it's to do with lung function, oxygen, and blood flow. I have never smoked.  I'm going to start doing Yoga in a few weeks, I hope this will yield positive results.

I'm 22.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on April 15, 2008, 09:45:13 AM
To all new comers posting in the last few days.

Take the advice and see a urologist. As depressing as that can be, as unhappy as it may make you, it is important to get a doctor to LOOK at what you are describing.

Secondly, if erections are sometimes good and sometimes not, then that is often related to psychology and emotions. Patience and relaxationa dn getting psychological help are important.

Third, if you are not sure, go see a doctor. Oh, did I say that already?

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jackisback on April 15, 2008, 11:02:34 AM
Yeah, of course. I saw one Uro about a year ago when it first started. He said wait, see how it goes. Saw another uro a few months ago, he said use Viagra, another a month later i saw another uro, he told me to do what God wants me to do (don't have sex before marriage. i was shocked to hear this from a medical "professional"). The last doc said it looked like Peyronie's, the second said it looked mild, but i think it may have progressed since then, not sure. Erection quality can differ for psychological reasons for sure (although it didn't used to for me until 1 year ago), but that doesn't mean there's not a real physical problem too, if you're never what you used to be. Erection quality (for me) seems also to be a function of: how recent and often I have had sexual activity lately, how active I have been and what i've been eating, in general the quality of what i am doing or seeing, how excited it makes me. I am considering seeing a therapist about this for emotional help though.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on April 15, 2008, 01:00:49 PM
Jack,

The history of Propecia may be quite important - we have heard more than once here of it being related to (and perhaps causing) Peyronie's Disease. When the effects of testosterone are blocked, one possible outcome is fibrosis. You may want to get a complete sex hormone assay done, including testosterone and sex hormone binding protein levels. In the meantime, you may help with erectile quality and with the Peyronie's by using the VED on a regular schedule (daily) as discussed in that thread. Additionally, some of us use Horny Goat weed which is a Prostoglandin inhibitor like Viagra that has anti-inflammatory effects and enhances erectile quality. If taken at therapeutic doses - it is about one tenth as strong as viagra, so a person who responds to 100 mg of viagra would need to take 1000 mg of HGW. If you look carefully at most labels, though, it will say something like "500 mg" per dose, but the dose is two capsules, and the "active icariin dose" is one tenth of the milligrams listed. Thus a 500 mg dose of HGW is really 50 mg of icariin in 2 capsules. If I take 20 capsules of HGW, that is delivering 500 milligrams of icariin, which is equivalent to 50 mg of viagra. In my experience it does not wokr as well, but i have almost no side effects excpet mild nasal stuffiness.

For now, I get 100 mg pills of viagra and cut them up into quarters, and then try to cut them into eighths. I take a bigger or smaller fragment depending on whether I desire a better erection for sex, or if I am just doing some "maintenance: viagra to improve my NO levels in general. I find that my need for viagra is WAY less when I am on arginine and/or HGW (taking 5-6 capsules of HGW per day in general).

So, for most of us, starting with te VED and arginine, plus HGW, plus dietary changes to reduce our pro-inflammatory status is where we swtart. Then look at testosterone levels and blood sugar to be sure that you are not dealing with diabetes or testosterone deficiency. IF OK, and progrssing, the would use PEntox.

Just my two cents worth.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on April 15, 2008, 01:50:27 PM
Jack
I know the risk of 1200 IU of Vitamin E a day. In my case the risk was worth it because after 12-18 months the curve corrected, E & Potaba. After about 5 years I drooped the Vitamin E to twice a day 800 IU. The urologist at the time said to keep taking it, "Its good for you."
My heart doctor persuaded me to stop taking it about a year before I had to have a stent. Then he put me on Plavix and a whole aspirin a day.
DO YOU HAVE SLEEP APENA? Are you overweight? I had sleep apnea for over 20 years before they found it. The CPAP did not work for me and had the surgery in 1994 and made a lot of difference almost instantly.
Any way anyone on this board can help just ask. A lot of wonderful people here.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jackisback on April 16, 2008, 12:03:10 AM
Tim -

thanks for all that, i should look into the VED. also, i've heard some claim that taking viagra regularly, i think you say for "maintenance" helps when combined w/ L-Arginine to remove the curve. I plan to see my dermatologist who originally warned me not to take propecia. I'm going to tell him about this, and hopefully he'll be able to refer me to a good urologist. I think that I probably need to do one of those doppler tests, or the sonogram thing. It's funny, the first uro I saw over a year ago didn't think it was Peyronie's (flaccid i think it looked better back then), but yet he also said he could do an easy surgery to fix the bend like it would be really simple. He also told me that my penis had probably always been bent and I just hadn't noticed it until now. You don't get treated very seriously when you're 21 and telling the doctor you have ED. It's basically assumed that it's all in your head.

JackP -

could you tell me what problems the over consumption of Vitamin E causes? i just know it's not recommended. I'd like to know so i can take precaution if i choose up my dosage. For instance, if it harms the liver obviously stay away from alcohol. Apparently I don't have sleep apnea b/c this test says i only have a huge snoring problem. I wake up in the middle of the night to breathe all the time, but not this night, the air conditions were perfect, i'd love to sleep in this room every night. I'm skinny and in ok shape. I can't do much aerobic exercise before i'm out of breath, so i'm going to be trying to work on this to increase bloodflow, and I will be taking up yoga in a few weeks too.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on April 16, 2008, 10:45:16 AM
J
Vitamin E (E) is a blood thinner. At that level if you cut  yourself you will bleed much more than if not on E. Also if you have to go in for surgery you have to be off it a week before. Always tell any doctor you see that you take E. Make sure you keep it on your list of meds.
Sleep Apnea:
Have you been in a sleep center? To properly diagnose apnea you have to spend the night and get "wired up". Some do an erection test to see if you have erections during sleep. You do not have to be overweight or out of condition to have apnea. Even large tonsisl can cause it.
Do you have air conditioning at home? Even central heat? I am retired HVAC company owner and you might look into a better filtration system and a UV light. I have both in my house and it does make a difference. These things that they sell on TV and the big box stores do not work (Sharper Image). We tested them and 3' away they do noting for indoor air quality. My wife is into indoor scented candles and things that "make things smell nice." They are one of the worst causes of bad indoor air quality. I had to show her the test to get her to stop.
Did you take Propecia? If so you need your Testesterone checked, that stuff is bad news and hard to treat afterward, a friend had all kinds of trouble.
Lots of luck, if you try the E be careful around sharp objects.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on April 16, 2008, 04:37:51 PM
Jackp:

My added comments about Vitamin E. If you take more than 400 I.U.s per day for any extended time, you should get blood work done to prevent a toxic buildup in your body. I get my blood work done regularly since heart surgery and I always ask the doc to check the E thing as well.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: AR on April 16, 2008, 05:11:35 PM
Jackp:

I cut myself in my wood shop the other day and bled like crazy. It was an "average" nail puncture to my thumb and it wouldn't stop bleeding! I was thinking: "Damn! It wasn't that bad."  I'm only on 400IU's a day, plus my multiple - is my blood thinned at this dose?  I guess I better slow down with the power tools, and nail guns if so.

That's funny about your wife and the candles... my wife burns incense. I hesitate to ask, but how does this test?

Thanks

AR


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on April 16, 2008, 05:36:18 PM
AR
Anything that burns or puts off an odor is an indoor air pollant. I was involved in a big study in 2003 with Air Advice. We had monitors that we put in homes and got a read out from the company.
Indoor air quality is worse than out door air quality. You can go the the EPA web site and get more information.
Jackp
Title: Re: Vitamin E ...
Post by: George999 on April 16, 2008, 07:39:24 PM
Just a couple of words about Vitamin E.  It is important to understand that there are actually two risk factors associated with taking Vitamin E and these CAN BE mitigated.  I, personally took in excess of 2000IU of Vitamin E daily for three months without adverse effects.  I AM NOT recommending that anyone do this, I am simply saying that the risks encountered in taking 1200IU of Vitamin E can be EASILY mitigated for most individuals.  These are the two problems with Vitamin E.

1) The Vitamin E usually used in supplement form is SYNTHETIC Alpha Tocopherol.  This poses two problems.  First of all, SYNTHETIC Alpha Tocopherol is often poorly assimilated.  This is NOT a risk factor but it is a factor in terms of effectiveness.  Secondly, the use of Alpha Tocopherol in isolation IS a potential risk factor.  There is speculation that supplementation with Alpha Tocopherol causes the body to dump Vitamin E indiscriminately in order to compensate for excessive levels of Alpha Tocopherol.  That COULD cause levels of Gamma Tocopherol to drop to a point of deficiency.  And Gamma Tocopherol ALONE is protective against the kind of free radical (oxidation) damage caused by Glycation.  In the case of the cardiovascular system, Glycation degrades the lining of the blood vessels resulting in the buildup of arterial plaque, among other things.  This plaque releases both free radicals and cytokines into the blood stream.  The free radicals result in part from the oxidization of Nitric Oxide (in a process referred to as nitration) and thus reduce Nitric Oxide to unhealthy levels while at the same time producing the toxic Peroxynitrite free radical.  ONLY Gamma Tocopherol is protective in this environment.  This is possibly why research has associated Vitamin E supplementation with increased cardio vascular risks.  This risk can be avoided completely by using only natural FULL SPECTRUM Vitamin E products. In my opinion, anyone who is taking Arginine supplements which can increase Nitric Oxide levels should also be taking Gamma Tocopherol, preferably in a balance Vitamin E formula, for this very reason.  (Reference 1) (http://www.freeradicalscience.com/showabstract.php?pmid=9096373) (Reference 2) (http://www.lef.org/magazine/mag2006/apr2006_report_gamma_01.htm)

2) Vitamin E diminishes the effectiveness of Vitamin K, which is essential to healthy clotting.  This is WHY large amounts of Vitamin E cause bleeding issues.  Simply taking Vitamin K concurrently with Vitamin E supplementation can effectively negate this problem for MOST people.  I use this caveat since there might be a few people with Vitamin K absorption issues who could get into trouble.  But I would think it prudent for anyone using Vitamin E to supplement with Vitamin K as well.  (Reference) (http://www.emedicine.com/med/byname/Vitamin-E-Toxicity.htm)

There are a few other factors, but they are not all that significant for most people.  People on statin drugs should NOT be taking Vitamin E since it can counter the beneficial LDL/HDL effects of the statin drug.  (Unfortunately, here again, most of the studies have probably been done with synthetic Alpha Tocopherol, so we have no clue as to what effect a full spectrum product would have in this regard.  But, simple, just discuss it with your physician, try to get a cholesterol test, start taking the full spectrum E product and test the cholesterol again.)

As has already been pointed out, the right thing to do is to discuss these issues with your physician and if in doubt test the clotting factors a few times to make sure everything is kosher.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on April 16, 2008, 09:25:03 PM
George
I did take the Full Spectrum Vitamin E while I was taking it. The Doctor did blood work every 6 month and I ASSUMED he was only checking Testesterone, I did not ask. He said everything else checked OK. Maybe he did check the effects of the E. I do not go to him anymore so I can only guess.
I had no illeffects from the E and drooped the dose to 800 IU a couple of years after the curve went away.
Thanks for all the great information.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: AR on April 16, 2008, 09:51:18 PM
George: you baffle me with the extent of your knowledge... awesome, period.  With your advice, I've been taking the Vitamin E with the Gamma - full spectrum, etc.  But indeed, at 400IU's plus my one a day multiple, can I be bleeding more than usual, when injured?

If so, and I need some K, what's the protocol?

Most appreciated,

AR
Title: Re: Vitamin E and statins
Post by: Old Man on April 16, 2008, 10:47:41 PM
George999:

Just read your post below about taking vitamin E and statin drugs at the same time. Presently, my cardiac specialist has me on generic Pravachol (Pravastatin 80 mg at bedtime). Every visit to him I carry my computer listing of all the meds I am taking and he has never addressed any problem with my taking E and pravastatin at the same time.

My next visit is not scheduled until October this year. Should I call his nurse and get her to advise him about this?

Thanks for your advise as usual.

Old Man
Title: Re: Vitamin E and Statins
Post by: Ptolemy on April 17, 2008, 01:28:26 AM
Interesting. I've been on 10 mg of Lipitor for 4 years with great blood tests. My Uro suggested 800 IU of E and I asked the cardiologist if he was OK with it. He was fine. However, my recent blood work since I've been on E showed that LDL Cholesterol is too high - with my problems he wants my LDL Cholesterol to be below 70. He increased the Lipitor to 20mg and it came down to 78 so he wants me to up it to 40mg. I'm reluctant to do this and have been bothered why my LDL suddenly shot up. I am now wondering was it the vitamin E?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on April 17, 2008, 10:58:00 AM
My heart doctor had me on Vitroin 10/20. My total cholesterol dropped to 89. I felt lousy.
Somewhere I read that men need a total cholesterol of at least 150 to properly get the testosterone through the body.
4 months off the Vytorin my total cholesterol was 177 and I a LOT better. Nurse called me back and wanted me back on Vyronin. I told her about the cholesterol and testesterone and she said she never heard of it.
At 177 I have objected to taking statins, and feel lots better off them.
My experience.
Jackp
Title: Vitamin E / Bleeding ...
Post by: George999 on April 17, 2008, 12:20:45 PM
AR, I REALLY believe you should follow up on this with your doctor because a NUMBER of things (including lots of supplements) can cause excessive bleeding.  In any case you need to find out for sure what it is that is behind this as quickly as possible.  400IU of any kind of Vitamin E should NOT be causing this.  Having said that, you could give Vitamin K a try.  If you are really deficient in K, that could cause a bleeding problem.  Dietary Vitamin K comes mainly from dark leafy vegetables.  Vitamin K supplements are hard to come by.  The one I actually like best because it is the easiest to assimilate is [ur=http://www.iherb.com/ProductDetails.aspx?c=1&pid=256]this one[/url].  Vitamin K1 must first be converted by the body into a useful form.  Some people have a problem with this process.  But, in any case, you need to follow up with the doc to MAKE SURE this issue is resolved.  - George


Quote from: AR on April 16, 2008, 09:51:18 PM
George: you baffle me with the extent of your knowledge... awesome, period.  With your advice, I've been taking the Vitamin E with the Gamma - full spectrum, etc.  But indeed, at 400IU's plus my one a day multiple, can I be bleeding more than usual, when injured?

If so, and I need some K, what's the protocol?

Most appreciated,

AR
Title: Re: Vitamin E and statins
Post by: George999 on April 17, 2008, 12:24:05 PM
I think that as long as your cholesterol numbers are fine, you shouldn't need to worry about it.  The problem is that it can affect cholesterol numbers and that needs to be factored into the equation.  My point was that people on statins should be cautious about using Vitamin E in excess of 100IU without running it by their physician.  If the physician knows, I would follow his/her advice on it.  - George

Quote from: Old Man on April 16, 2008, 10:47:41 PM
George999:

Just read your post below about taking vitamin E and statin drugs at the same time. Presently, my cardiac specialist has me on generic Pravachol (Pravastatin 80 mg at bedtime). Every visit to him I carry my computer listing of all the meds I am taking and he has never addressed any problem with my taking E and pravastatin at the same time.

My next visit is not scheduled until October this year. Should I call his nurse and get her to advise him about this?

Thanks for your advise as usual.

Old Man
Title: Re: Vitamin E and Statins
Post by: George999 on April 17, 2008, 12:29:00 PM
Sounds like you are between a rock and a hard place on this.  I think you really have to evaluate in your own mind whether it is worth it to take the Vitamin E and have to up the Lipitor dosage as a result of that.  I don't envy you.  Of course, in the broader sense, you need to make sure you are doing everything possible on the dietary side to deal with the problem as well.  And that means an absolute determination to avoid ALL sweets (other than fruit in its natural state) as well as trans and saturated fats.  - George

Quote from: Ptolemy on April 17, 2008, 01:28:26 AM
Interesting. I've been on 10 mg of Lipitor for 4 years with great blood tests. My Uro suggested 800 IU of E and I asked the cardiologist if he was OK with it. He was fine. However, my recent blood work since I've been on E showed that LDL Cholesterol is too high - with my problems he wants my LDL Cholesterol to be below 70. He increased the Lipitor to 20mg and it came down to 78 so he wants me to up it to 40mg. I'm reluctant to do this and have been bothered why my LDL suddenly shot up. I am now wondering was it the vitamin E?
Title: Re: Vitamin E and Statins
Post by: Ptolemy on April 17, 2008, 02:29:52 PM
Quote from: George999 on April 17, 2008, 12:29:00 PM
Sounds like you are between a rock and a hard place on this.  I think you really have to evaluate in your own mind whether it is worth it to take the Vitamin E and have to up the Lipitor dosage as a result of that.  I don't envy you.  Of course, in the broader sense, you need to make sure you are doing everything possible on the dietary side to deal with the problem as well.  And that means an absolute determination to avoid ALL sweets (other than fruit in its natural state) as well as trans and saturated fats.  - George


What I'm inclined to try (if this makes sense to you George999) is to switch my Vitamin E from the D-Alpha Tocopherol to the Full Spectrum Vitamin E and see if I can get the LDL back to below 70 while remaining on the Lipitor 20 mg's. I'm pretty good on the saturated fats except for restaurants - some seem to use lots of butter and the like. So I'll be a little more cautious on the restaurants I visit and see what happens after a couple of months.
Title: Re: Vitamin E and statins
Post by: Old Man on April 17, 2008, 04:09:10 PM
George999:

MY LDL and HDL numbers are way below the average person's. My total cholesterol number usually runs about 125 to 130. I am on Pravastatin 80 MG at bedtime RXd by cardiologist. He knows about all my meds as stated previously. I know some guys that would "kill" for a number like mine. There's runs in the 180 to 250 all the time.

Vytorin has come under fire lately about this problem. My doc says stay away from Vytorin at all costs. He says he never believed in its ability to what the makers claimed to begin with, so who knows?  So, I will stay with his decision for now. I have no problems with the statins so far. Will keep monitoring the old blood though every 6 months.

Regards, Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: tommarkey on April 17, 2008, 04:23:32 PM
Hi! I'm new in PDS... I will start saying that I don't know very good english, so, sorry, i will do the best to all understand what i'm writting.
(To administrators: Sorry if this is not the local that i have to post...)

I'm 18 years old, and i have peyronie's disease since aproximatelly 16. I know that this is uncommon in my age, and is for this that i would be thankful for replies of more experient peyronie's patients.
I discovered this disease recently, aproximatelly 6 months. I went to 2 uro-doctors, and the two said to me that i have to do a surgery... After i read a lot from this... I'm not understanding why the uro-doctors don't want to try other trataments with me that not be E vitamin and surgery....Laser, Potaba, Interconferon, Verapamil...Peyronie's has a lot of trataments! If none of them bring results to me, so, i will do the surgery. But i want to try them before a surgery.... Recently an another uro-doctor prescribed to me Propoleum (propolis), a tratament that i already started... I want to know what you think from this...

And more.... I have 45 degrees of penile curvature (I don't know what's degrees, i think that is one eighth from a circle, no? I call this "graus", in portuguese)... This can bother my wife someday in a sexual relation? And me, also? Tell your experiences to me, please...
I don't have pain in my erection... i think that the calcium plaque is already formed...It is in the base of penis, the curvature is to the top...

Thanks for the help!
Title: Re: Vitamin E and Statins
Post by: George999 on April 17, 2008, 09:38:10 PM
Quote from: Ptolemy on April 17, 2008, 02:29:52 PM
Quote from: George999 on April 17, 2008, 12:29:00 PM
Sounds like you are between a rock and a hard place on this.  I think you really have to evaluate in your own mind whether it is worth it to take the Vitamin E and have to up the Lipitor dosage as a result of that.  I don't envy you.  Of course, in the broader sense, you need to make sure you are doing everything possible on the dietary side to deal with the problem as well.  And that means an absolute determination to avoid ALL sweets (other than fruit in its natural state) as well as trans and saturated fats.  - George


What I'm inclined to try (if this makes sense to you George999) is to switch my Vitamin E from the D-Alpha Tocopherol to the Full Spectrum Vitamin E and see if I can get the LDL back to below 70 while remaining on the Lipitor 20 mg's. I'm pretty good on the saturated fats except for restaurants - some seem to use lots of butter and the like. So I'll be a little more cautious on the restaurants I visit and see what happens after a couple of months.

Hey, I'm NOT a doctor, so don't take my word on this too seriously!  But I do think that the full spectrum stuff MIGHT be helpful in your case.  And I would even consider trying to find a pure Gamma Tocopherol product if the cholesterol is still too high.  Who knows, 300mg of Gamma T alone might do the job without messing with the cholesterol at all.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: AR on April 17, 2008, 09:57:11 PM
Thanks for the scoop George.  AR
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on April 18, 2008, 02:15:46 PM
TomMarkey,

What always comes up when young men tell us they have Peyronies Disease is to ask: is it the way they always were built? As we get more erections, we start to notice the shape. By 12-13 most guys have learnt to play with themselves and notice the shape. I am assuming that you noticed it changing shape on you a couple of years ago. Nevertheless, you should be very clear on that to be certain that it is not congenital curvature.

I would do all that yo mention first. Why try surgery if you have a chance to try VED or traction first??

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: tommarkey on April 18, 2008, 04:48:55 PM
Hi Tim, thanks for the answer.

I'm certain that aren't congenital curvature. This starts after a "snap" that occured in my penis, approximately 2 years ago, nobody in my family have this. My urologist said that this is Peyronie's disease, but i'm still a little confused about this. The symptoms are from Peyronies Disease, but recently i read in the "Campbell's Urology" book that exists an acquired curvature that are not Peyronie. I didn't understand exactly, cause the book is in english, but, according to what i understood, the diference between Peyronies Disease and this curvature is that Peyronie's patients have Erectile Disfunction and shortening* of the penis (*what is this?) and the others just have a scar in the tunica albuginea. I think that my problem can be this other, is a possibility... I don't have ED (I just lost a little of rigidity in the penis)...

Well... I want to try these trataments like the traction, but the problem is that here in Brazil urologists don't use trataments that are not approved in AUA (American Urological Association) and SBU (Brazilian Urological Society)... They just try E Vitamin and the surgery and don't believe in medicines like Potaba, Verapamil, Traction, Shock-wave...
I wish I try these trataments, but i wouldn't have medical accompaniment...
At the moment, the most important thing to me is to know if i can have a normal sexual relation, or if this will bother me or my wife someday...

Thanks,
tommarkey
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on April 18, 2008, 09:37:26 PM
Tommarkey,
Peyronies is not always associated with ED. My understanding is that if your bend is due to scarring or plaque, that this is Peyronie's Disease.  And also... if you have lost a little rigidity in your erection, then some would argue that you do have some mild ED. I believe erectile dysfunction refers to anything less than a "normal" full hard erection. There is a study that states that many Peyronies Disease patients actually started to experience some mild ED, and this is waht made them (us) susceptible to the trauma that caused the Peyronies Disease in the first place. This is why ED and Peyronies Disease are so commonly discussed together.

Do you know what the circumstances were they caused the "snap" you referred too? That also sounds like an indication that some type of trauma was introduced and may have caused your condition.

Statistics show that 70-80% of Peyronies Disease patients have no idea what caused it or are not aware of any direct trauma that may have caused it.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on April 20, 2008, 05:23:33 PM
Tom,

Take your time and get familiar with the site here. If it is tough to understand, work with an online dictionary/translator, and then ask us if you are still confused!

Your definitions of Peyronie's are incorrect. It can have ED, or it can be without ED. Mine started with a slight dent, and no ED at all.

As for whether or not it will be a problem, time will tell - but probably not. Many men with some curvature can have intercourse and do. For some of us, the slightest change in the shape of the penis is noted with horror, but our partners don't even see it (even when we show them)!

So start conservatively. It is OK to try vitamin E, but most of us failed on that. It may be that using a broad spectrum (means a vitamin E with 8 different kinds of vitamin E not just alpha tocopeherol) may be of help. For many of us the VED has helped. I tyink a combination of the VED and arginine and occasional low dose viagra has helped my curve and mild ED. I am still trying to prevent new dents from popping up (popping down??).

Hang in there (means to be patient and to not panic in idiomatic english),

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: George999 on April 21, 2008, 11:01:58 AM
Tom, I think it is important to note that L-Arginine and Vitamin E can work in a synergistic fashion.  Taking L-Arginine can increase the supply of Nitric Oxide in the body due to the fact that the body uses L-Arginine to make Nitric Oxide.  But this can also increase the production of damaging free radicals.  Gamma Tocopherol, a component of Vitamin E is able to quench and eliminate those specific free radicals.  My favorite L-Arginine product for this purpose is VasoFlow made by SANN.  I really like this product because it features a time release delivery system which gradually delivers the Arginine AND several cofactors designed to make the Arginine more effective in generating Nitric Oxide.  As for the Vitamin E, be sure to find a product that supplies large amounts of Gamma Tocopherol.  Most Vitamin E products on the market supply only synthetic Alpha Tocopherol which may even make the free radical problem worse.  One of the side effects of Alpha Tocopherol is that it tends to raise LDL and lower HDL and that is a sign to me that it is doing bad things in the arteries which would not be beneficial in treating Peyronies.  I am currently moving to a Vitamin E product that provides mainly Gamma Tocopherol as I am beginning to question even the "balanced" approach that I have been advocating for some time now.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: tommarkey on April 21, 2008, 11:12:19 AM
Thanks all of you... I will answer one of each time, it's easilly to me

Hi, lwillisjr thank you to.

Yes, i read this in all the places of the net, that Peyronies Disease is associated with a variable degree of ED... I just read in the book that the diference that Peyronies Disease and other acquired curvatures is the ED and the shortening of the penis... If someone wants, i can post what is writted in this book about diference between the two, is not so long.
Yes, i remember the circumstances.... I was sleeping and dreaming... I had a nocturnal erection and unconsciously i pushed my penis a little brusquely to down, when i listened the "snap"... In the way that i remember, i don't have pain or swelling of the penis... I just don't remember if i lost the erection, cause i was sleeping... Since this day i have curvature in the penis... In the begin, i had painful erections, but this finished in some time and now i just have the curvature...
I read something about "subclinical fracture of the penis" that also leads to curvature and scar... In the truth, according to the book, exists 3 cases that leads to curvature of the penis.... They are "Fracture of the penis", "Subclinical fracture of the penis" and "Peyronie's Disease"... I think that the second can has happened with me, the symptons are the same from Peyronies Disease... But i don't know...

Thankfull,
Tommarkey
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: tommarkey on April 21, 2008, 11:51:48 AM
Tim,

Yes, this site is wonderful, i was looking for a forum like this have much time!
yes, i know just so so english, so i need the help from a translator, I'm using AltaVista Babel Fish.

I think that what i posted is incorrect to.... i don't know, i read this in a english book of medicine that i have, maybe i don't understood correctly, it is so difficult...
You "took of one weight of my head"... If the intercourse still can be possible, the greater problem to me is minor now... thanks

I have also tryied E Vitamin, but not this broad spectrum.... I will look for this in the drugstore
These others that you used is with medical accompaniment? I think that i have to try without, cause nobody of them wants to try, they just want the surgery....I have to find someone that wants to try
These became me hopeful!

Dents? from the mouth? ???

Thanks, hangs from here!
Tommarkey.


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: tommarkey on April 21, 2008, 12:12:27 PM
Hi George,

I don't read about L-Arginine in the tratament of Peyronies Disease.... Now I'm reading here, is an aminoacid... I think that don't have any problem if i take this prescription for my account, no? (without the doctor) Don't looks me a hard drug...
I did not know about the differences between Alpha and Gamma Tocopherol... I used E Vitamin, but never know this.... I will find a Gamma-Tochoperol high dosage in the drugstore! And also i will look for this Vasoflow SANN.... I don't have any problems with colesterol, to me i think that will not have problems!
I just don't know the dosage... How many you are using?

And now, for all.... What i do with my propolis (propoleum)? Stop and starts these others or continue with these others?

Thank you George,
Tommarkey
Title: Re: Peyronies and the Catheter
Post by: Ptolemy on April 21, 2008, 07:42:02 PM
I had hernia surgery 5 days ago. Everything went fine but I was shocked to come out of anesthesia with a catheter up my penis. I wasn't told this would happen, I've never had one before and didn't like the idea of an army of surgeons trying to thread a tube up my Peyronies penis without knowing about the Peyronies.

I have bruising right on the pubic/lower stomach area. There were 3 incisions but the bruising is not around the incisions, it looks like it's from some trauma under it all. However, because I was feeling so fine two days following the surgery I cautiously used the VED - I was using the smallest tube that week. After the second day of VED use I had bruising on the low part of the penis, something I've never had with VED use over that past 15 months. So I've discontinue the VED until everything clears up

I have two questions:
1. A catheter can't be good for someone susceptible to Peyronies. Have any here had any experience or concerns on this?
2. How could hernia surgery generate blood that I could be draw up the penis and does anyone think I've done any harm? There is no tenderness, everything feels the same as it always did.
Title: Re: Hernia surgery
Post by: Old Man on April 21, 2008, 08:13:10 PM
Ptolemy:

It is not uncommon for a catheter to be used during hernia surgery. My double hernia "patch" with goretex material was done as an out patient surgery, but they still used a catheter. I had some bruising in the general area you are talking about. I told my surgeon about my peyronies disease ahead of time, but they still did the catheter bit. After about 2 hours it was removed, I used a urinal and they sent me home with a 4 inch incision in my left side. No stitches, just space age glue with a large band aid over it. Took about 4 weeks for it to heal well.

Anyway, I strongly urge you to leave off the VED therapy at least until the bruising goes away. You could cause a problem with blood flow if you should pull the blood from the affected area(s). It won't hurt to delay the VED exercises while you heal. Only you can determine how long would be best, so monitor your condition daily until you feel it safe to resume the exercises.

Old Man
Title: Access to supplements in Brazil ...
Post by: George999 on April 21, 2008, 10:21:51 PM
Tom, Gamma Tocopherol products are available via Internet from iherb.com in Los Angeles California and they do ship to Brazil.  SANN VasoFlow is available from bodybuilding.com in Meridian Idaho and they also ship to Brazil.  Also, in Brazil you should be able to get the Gamma Tocopherol product from  BRAZILL DISTRIBUTION CENT, RUA BUENO BRANDAO 366,171, VILLA NOVA CONC, SAO PAULO, Brazil.  Neither of these items are typically considered "controlled substances" in most countries.  Both companies I have listed above are quite reputable and I have ordered from both on numerous occasions.  As for dosages, I am currently taking one of the Gamma Tocopherol's each day and three of the VasoFlows spaced out through the day.  - George

Quote from: tommarkey on April 21, 2008, 12:12:27 PM
Hi George,

I don't read about L-Arginine in the tratament of Peyronies Disease.... Now I'm reading here, is an aminoacid... I think that don't have any problem if i take this prescription for my account, no? (without the doctor) Don't looks me a hard drug...
I did not know about the differences between Alpha and Gamma Tocopherol... I used E Vitamin, but never know this.... I will find a Gamma-Tochoperol high dosage in the drugstore! And also i will look for this Vasoflow SANN.... I don't have any problems with colesterol, to me i think that will not have problems!
I just don't know the dosage... How many you are using?

And now, for all.... What i do with my propolis (propoleum)? Stop and starts these others or continue with these others?

Thank you George,
Tommarkey
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Irish05 on April 22, 2008, 07:29:59 PM
I have a quick question.

I have been diagnosed now for about 10 months. I don't have pain during sex but seem to have a good bit of soreness the day after. I am wondering if that is normal because from the research I have done people seem to have pain during sex. My doctor diagnosed me with Peyronies, but sometimes I wonder if that is correct. I have never done anything traumatic to my penis. I do have quite a "dent" in my penis, but it does not bend very much. It seemed to take more of the length rather than bending.

Thanks for any responses.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: AR on April 22, 2008, 09:08:21 PM
Hi Irish05:
My suggestion is to keep reading posts on this site and line-up another Uro visit to get a "second" opinion. 
Good luck,  AR
Title: Re: Full Spectrum Vitamin E
Post by: Ptolemy on April 23, 2008, 06:01:24 PM
Quote from: George999 on April 21, 2008, 11:01:58 AM
........As for the Vitamin E, be sure to find a product that supplies large amounts of Gamma Tocopherol.  Most Vitamin E products on the market supply only synthetic Alpha Tocopherol which may even make the free radical problem worse.  One of the side effects of Alpha Tocopherol is that it tends to raise LDL and lower HDL and that is a sign to me that it is doing bad things in the arteries which would not be beneficial in treating Peyronies.  I am currently moving to a Vitamin E product that provides mainly Gamma Tocopherol as I am beginning to question even the "balanced" approach that I have been advocating for some time now.  - George

George, many of the E's with Beta, Delta and Gamma only list the IU of the Alpha Tocopherol. What is the ideal balance among these 4 Tocopherol's?

I've switch to a Solgar Vitamin E 400 IU (x 2 daily) of D-Alpha Tocopherol but there is no amounts listed for the other 3.
Title: Re: Full Spectrum Vitamin E
Post by: George999 on April 23, 2008, 09:51:47 PM
Quote from: Ptolemy on April 23, 2008, 06:01:24 PM
Quote from: George999 on April 21, 2008, 11:01:58 AM
........As for the Vitamin E, be sure to find a product that supplies large amounts of Gamma Tocopherol.  Most Vitamin E products on the market supply only synthetic Alpha Tocopherol which may even make the free radical problem worse.  One of the side effects of Alpha Tocopherol is that it tends to raise LDL and lower HDL and that is a sign to me that it is doing bad things in the arteries which would not be beneficial in treating Peyronies.  I am currently moving to a Vitamin E product that provides mainly Gamma Tocopherol as I am beginning to question even the "balanced" approach that I have been advocating for some time now.  - George

George, many of the E's with Beta, Delta and Gamma only list the IU of the Alpha Tocopherol. What is the ideal balance among these 4 Tocopherol's?

I've switch to a Solgar Vitamin E 400 IU (x 2 daily) of D-Alpha Tocopherol but there is no amounts listed for the other 3.

I personally believe you need to be getting at least 300mg of Gamma T.  If the product doesn't state the potency, go for one that does.  As of today, I am starting on a completely Gamma T product.  The more I am reading, the more I am becoming convinced that it is Gamma T that is the real beneficial Vitamin E component.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: big dad on April 25, 2008, 01:13:28 PM
Hello All,  I am new to this post and still trying to figure out the proper way to post messages.  I am a married 40 year old male with two children and an active sex life (to date).  I was just diagnosed by my Urologist with having Peyronies Disease (told nothing he could or would do and i have to just live with it).  3 months back I started having extremely painful erections and then noticed that I had an ~ 45 degree bend in my penis.  My wife and I are a little freaked out by this >:(.  I don't at this point have a large noticeable calcification, just a small (smaller than a BB ) sized hard band on my penis. The pain has mostly subsided and I no longer have painful erections and no noticeable ED.  I had never heard of this dreadful disease and was surprised to learn that it effects 1-5% of men.

I have read that I should actively try to slow/stop the progression of the disease as soon as possible and want to see what the best thing I can be doing at this stage before it becomes worse.  Is if a foregone conclusion that it will get worse over the next year, or is there some hope that it will stay where it is. I have read Pentox, VED, agressive vitamine therapy, aleo, full spectrum VitE etc.. have worked for some to slow/stop/reverse the disease? 

Can you discuss your thoughts on how I should treat this in its early stages, or am I wasting my time and money trying? Is there any credible information on what the pharmaceutical industry has in the pipeline to cure or treat Peyronies disease. I am still in shock about learning about this dreadful disease.  I am very happy to have stumbled onto this website and look forward to contributing if possible.

Sincerely,
Big Dad
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on April 25, 2008, 03:45:56 PM
Hi Big Dad,

Welcome. In all modesty, most of us would say that you have come to the right place.

Just like arriving late at a party, it can be awkward and confusing to jump right in to someone else's conversation. But that will still help the most - to ask and post questions. For newcomers there is a newcomers board called the "Newly Diagnosed Highlights" (up at the top of the front page). It has summaries of the gist of what we have discussed here on a variety of topics. In a way it gives you a chance to see what others think about the variety of treatments available.

That there is no one solution that everyone recommends is proof that there is no perfect solution available. I am tying to come up with an algorithm that helps one make choices (in a broad sense only).

First off, you are too fresh out of the gate to be "stable" - it could get worse or better on it's own. But in general, stable and unstable Peyronie's Disease (Peyronies Disease) may respond differently to different treatments. Either sort may benefit from use of the VED. I, like many, have benefited greatly (OK - others have benefited more than me, but I am not quibbling!) from using the VED in a regular fashion. Although we have discussed at length the "How-to" of the VED here, the long and the short of it is that regular stretching may help reduce the angulation. Similarly, traction using a "Penis Enlargement" (PE) device (google "FastSize", but not at work) can do the same thing - though fewer of us here have experience with that. Other ways of PE are not described as helpful, and some (ie jelqing) have been attributed as causative for Peyronies Disease here.

A very stable lesion, without change for a long time, on a penis that cannot be used for sex but which can get hard, would be a good candidate for surgery. IOW, try everything else first. Surgery is not a good idea for someone who is getting additional problems, hence the need to wait to see what evolves with your own situation over time.

Supplements many of us have done include vitamin E using a broad spectrum brand, not just alpha tocopherol (need that gamma and the tocotrienols). Others have used a variety of supplements. Viagra may help increase NO production and help reduce inflammation. Attention to exercise and a low glycemic index diet may help = especially if you have any diabetic tendencies. Diabetes is an independent risk factor for Peyronies Disease.

Pentox is used to inhibit TGF beta. The original authors (by Brant; senior author was Tom Lue of UCSF) suggested it might be most helpful for those with evolving, or unstable lesions that are gradually worsening, and less useful for those with stable or calcified lesions.
http://www.nature.com/ncpuro/journal/v3/n2/full/ncpuro0409.html

Finally, it might be useful to go to a second urologist to see if he or she would be willing to do a color duplex ultrasound to assess blood flow in the penis and to determine that there is NOT calcification. Also, doing that after an induced erection is a good way to get an objective set of data to compare "before and after" pictures.

Here is to a good "after" for you.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: j on April 25, 2008, 05:54:14 PM
Big Dad, it is NOT a foregone conclusion that it will get worse.  Mine has been stable for a couple of years and never got to the point of causing ED, just a bend.

Read up on injectable collagenase (now called Xiaflex) being developed by a company called Auxilium; it's grinding its way through FDA approval but could end up being a usefull treatment for a lot of us.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Izzy1990 on April 29, 2008, 07:49:19 PM
Some general questions about Peyronie's Disease:

1)  I've read that it can cause "shortening of the penis."  What does this mean?  Is this permanent??  If the condition heals, will the penis return to its regular size?

2) Can Peyronies Disease cause someone to be unable to reach an erection, or at least a full erection?  Again, if the condition heals, will someone who was unable to reach an erection once again be able to have one without any reprecussions? 

Basically, my main question is this: are the effects of Peyronies Disease, particularly concerning penis size and erectile function, permanent??
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: tommarkey on April 29, 2008, 11:11:52 PM
Hi Izzy!

Well... I will try to answer in my experience about this, but i think that others can answer better

1 - The shortening of the penis is caused by the calcium plaque in the penis... This answer is relative... While you have the curvature and the plaque, you will have the shortening of the penis... But Peyronie have a lot of trataments, some of them can reduce the plaque and curvature, others (surgery) can straight the penis by a reduction of the other side or by remove of the plaque (what does not short the penis)

2 - Peyronie's disease in some cases is associated with a variable ED... I have just lost a little of my rigidity, what is low ED... But generally this appear before the progression of the disease, just in rare cases after
We cant know if is permanent... in some cases, ED is associated with the emotional of the patient because the Peyronies Disease, and is not a organic problem... ED also has tratament, and new trataments are coming!


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on April 30, 2008, 09:20:44 AM
Izzy
I will tell you my case about loss of size and it may be typical of others with Peronies.
Over 12 years ago noticed curve up about 20 degrees. Went to Uro with BPH and asked about the curve. He put me on Vitamin E 400IU three times a day and Potaba. I had plaque just behind the circomsision scar, on the top side.
About 18 months later the curve corrected.
While the plaque was still present I had to have a TURP for the prostate and asked if he could fix the Peronies. No. (Long Story)
Mild ED had already started when the Peronies appeared. Just after the curve corrected Viagra came out but I had already lost 1.25 inches.
ED got worse, Pills were of little help. Had a Color Doppler that showed Venous Leakage. Started shots with PGE1 and then trimix. Did not work.
Had to delay implant surgery until 10/07 because of chest pains and heart stents.
During surgery 10/07 the urethra was punctured and the operation was aborted. Dr. said it was because of corporal fibrosis. Fibrosis was caused by Peronies, ED, Venous Leakage and shots. Mostly shots.
The way I understand it is that when you have ED you do not have night time erections, erections are not as frequent and that leads to fibrosis which also leads to penile shortening.
What am I doing about it. 10/06 when the implant was delayed I asked the Dr what can I do. He gave me a prescription for a VED and I had it fit in his office.
I did all the wrong things. I thought more is better. I pumped as much as I could stand and held it for up to 20 minutes. This caused an abrasion on the side from the head back about 2 inches. Took weeks to heal. After that I only used the VED for sex.
10/07 after the failed implant I found this site. (You can read the story under Surgery for Peronies back in October.) Then Old Man on the VED thread put me on the right path for VED usage. I have gained back from 1/4 to 1/2 inch depending on the day.
Will I ever get back to where I was? No. Can I use what I have left? Yes. My wife has been very supportive. Yes, our sex life has changed but we still have one.
When she first noticed the loss of size she asked "Jack have you lost some size." Of course I told her yes. Then she said to me "Jack I did not marry you for your penis."
At over 65 we make accommodations for each other. We still have a sex life and have fun at it. Was it like it was 40 years ago? No. Love and intercourse are not sex. Sex is not intercourse alone.
With all this said. Will the effects be permanent? Probably to a degree. It is how we change our lives and respond to our spouse that matters. We are not the same as we were when we first married almost 40 years ago. And you know some of that is good. I will be willing to bet that other things besides Peronies has changed. We look at our size as a reflection of who we are. Size does not make a man, it is how we deal with it.
My $0.02
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: AR on April 30, 2008, 01:29:23 PM
jackp:
That was a nice post, thank you.

A couple questions if I might:  What is BPH, and TURP?  And isn't plaque and fibrosis the same thing..??     

And I guess while I'm at it: How does one measure length when they have a severe bend..?  Use a cloth tape and follow the bend, or a ruler, straight-out and guesstimate where you'd be..?  (I'm serious.)


AR      ???
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on April 30, 2008, 03:00:28 PM
AR
OK
BPH is an enlarged prostate mine started with an infection that is hard to treat see if I can spell it. Benign Prostate Hyperplasia.

TUPR is surgery to reduce the prostate where they go up the penis to the prostate and remove some of it.  :'(

They may be related to Peronies but are related to ED.

When I was a teen we used to measure the underside back as far as we could push to the base of the penis. That is how some had 8" when they relay had about 5.5 to 6 if measured properly. Properly is the top side pushed all the way back to the pubic bone.
Never did measure with the bend. Afterward using the proper method I had lost 1.25 inches. Depending on the bend I would use a cloth tape, measure each side and average the difference. The short side is what you probably will end up with when the plaque is stable.
If I knew then what I know now I would have been doing the VED to help save some size. Old Man has the proper procedure.
Thanks for the comment.
Jackp



Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on April 30, 2008, 03:05:28 PM
AR
One other thought.
Do Not Use Shots for ED. They make the fibrosis in the corpora's worse, and can lead to Peronies.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: hornman on April 30, 2008, 08:42:35 PM
Hello all.  This is my 1st post. I went to see a uro about 3 months ago for penile pain.  He barely examined me and diagnosed an inflammed prostate. He put me on cipro for 8 wks. Nothing got any better.  The cipro is nasty stuff.  After searching the net I diagnosed myself with Peyronies.  My uro agrees.  I have the telltale plaque on both sides at the base of my penise.  Uro told me to take vit E and watch and see. Of course after reading suggestions on this forum I am taking most of the over the counter recommended supplements.  The inflammation is causing me pain constantly, erect or not!  As of now my sex life is ruined.  I noticed that the listed warnings for Viagra  state that you should discuss with your doctor before use if you have Peyronies disease. I have experimented with Viaagra.  Can viagra cause peyronies?
Title: Re: Open Questions on Peyronies Disease /TURP
Post by: Old Man on April 30, 2008, 10:34:45 PM
AR:

TURP is an acronym for Trans Urethral Resection Procedure. This is commonly referred to as the ream job on the inside or where the  urethra is being closed down/squeezed by the BPH. The cutter tool is inserted and it literally cuts away the enlarged flesh and allows the urethra to be opened up again.

Sounds horrible, but it really does not hurt that much. Just mighty uncomfortable when urinating for the first few days. You do have to wear a Foley catheter with the procedure too.

Old Man

PS: Had my annual PSA test today and it was 0.0 which it has been for 13 years now since surgery.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on May 01, 2008, 01:08:02 AM
hornman - see if your uro can prescribe you Pentox!!! - do this asap.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Kimo on May 01, 2008, 01:54:48 AM
Hornman, I came down with peyronies after taking my first dose of viagra,,But later realised that viagra didn't cause it,,,I already had an underlying condition,,,,Over the past 10 yrs i have continued using viagra and i really do believe it has helped to straighten things back out...

I too had lots of pain when either erect or flacid...nothing seemd to work,,but one day i got an idea to use a magnet which i found and wore it in my shorts while sleeping,,,I knew imeadiately that something was happening and in 3 days i was pain free,,,i did continue using it for about 3 weeks to make sure the pain did not come back...i have been pain free ever since...NoW that may seem crazy but it worked for me....If you have any question's please feel free to email me at kauaiman005@yahoo.com

Kimo
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: AR on May 01, 2008, 10:36:04 AM
Thanks jackp, and Old Man:

TURP - Ouch! Yes it sounds very painful!  I guess I'm a lucky guy... I only have Peyronies Disease!!   :P

I don't know what PSA is either, but I'm glad your's is only 0.0 Old Man.

I asked earlier: is plaque and fibrosis the same thing, or are they closely related or what..?

As I reported earlier, I'm fearful that I may've, as jackp put it: ".. thought more was better.." and over did it with my VED a few weeks ago, and hurt myself!  The Mrs and I are planning an intimate encounter for this evening, so, in the middle of our arousing and passionate for-play, I'll say "..excuse me Honey for just a second.." turn on a bright light, get out the ol' protractor and give my woody a quick exam before it wilts, and - hope for the best...    :-\

AR

Welcome Hornman.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on May 01, 2008, 03:09:31 PM
AR:

Glad that you do not know what PSA means! If you do, you know that you have had a digital rectal and a blood test for prostate cancer. However, if you are over 45, you should get your PSA checked at least once every two to three years based on what your first reading comes to as a base line for future tests. (Note: African American men are more likely to have prostate cancer than Caucasian males based on research done by the ACS.)

Now, PSA is an acronym for Prostate Specific Antigen which a person's score is measured from the blood lab work. A score of 0.0 means there is possibly no cancer cells left in my blood stream to spread to other body parts/bone marrow,etc. Since I am 13 years out from a radical prostatectomy, 0.0 means that I am virtually home free from the cancer spreading to other parts of my body.

So, bottom line, do your homework and be on the lookout that you do not get prostate cancer. Do your checkups.

Old Man

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on May 01, 2008, 03:13:44 PM
AR:

Forgot to answer your question about plaque and fibrosis. I suppose one could say that they are akin to each other in some way. However, fibrosis means that the tissue has become fibrous in nature and is like string in a ball for want of a better word. Plaque is more of a hardening of the tissues/tunica and is usually flat or similar in nature.

The above is about as simple as I can put it, but others will have a better description of it. Tim works with those terms and I am sure that he can explain it in more detail.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: AR on May 01, 2008, 03:18:04 PM
Thanks for that info Old Man, and congrats on your 0.0!

I have had that blood work but didn't know what it was called.    :-\

AR

PS: just caught your second post - thanks.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on May 01, 2008, 11:20:32 PM
Kimo,

I went and tried that magnet trick. Seemed to work, but I was walking out of Home Depot and got stopped for shoplifting. I had three wrenches, fourteen bolts and two big nuts stuck to my crotch!

Tim

::)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Kimo on May 02, 2008, 01:14:38 AM
Tim,,that was good man,i can't quit laughing,,never thought that would happen....

kimo
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on May 02, 2008, 11:05:46 AM
Tim:

Next time, when shopping at Home Depot, wear a smaller less powered magnet!!!!

Old Man ::) ::) ::)
Title: Re: Definition of Terms
Post by: Ptolemy on May 06, 2008, 05:07:48 PM
I understand from our Glossary "Glossary of Common Terms and Abbreviations Associated with Peyronie's Disease" the meaning of "Fibrosis" and the meaning of "Plaque."

What is the definition of "Corporal Fibrosis" often referenced?
Title: Funny Feeligs
Post by: bodoo2u on May 08, 2008, 03:01:48 AM
Until recently my plaque/scar was pretty benign. I have been using a VED off and on for a year, and traction for about 6 months. I recently began taking ACL, Carnosine and B12. I'm not sure what's going on, but all of a sudden I can "feel" my plaque. I don't mean with my hand (I could always do that), and now I can feel a sensation in the plaque. It doesn't hurt in a painful sense, but the sensation is ever present, and it feels like it's itching or slightly burning all the time.

What gives? Can anyone tell me what's going on?
Title: Re: Funny Feeligs
Post by: newguy on May 08, 2008, 04:27:15 AM
bodoo2u:

Have you recently increased the intensity of your VED + traction routine? If not maybe the addition of ACL or carnosine could explain the changes, though it's not something I've heard of before. It's hard to know whether this is positive (as in working/stretching the plaque) or negative (an injury). You could try laying off those for a week or two and seeing if the feeling goes away.. or doing the same with either the VED or traction. Or maybe a 'wait and see' approach.
Title: Re: VED therapy
Post by: Old Man on May 08, 2008, 09:58:14 AM
boodoo2u:

I noticed that in your last post that you stated you had used the VED in an off and on basis. From my experience with their usage, it is of utmost importance to do the VED exercises on a daily basis. Doing them on an irregular basis does not lend itself to a constant exercise routine.

VED therapy is not a "quick fix" for Peyronies Disease symptoms. One must decide to start the protocol with a long term schedule in mind. If one uses the 26 week protocol for the three cylinder VED, it must be adhered to on a rigid basis in order to see good results. You might want to consider leaving off the traction for a while and use only the VED on a daily basis for at least a month or two before adding the traction back in to your routine.

Old Man
Title: VED Therapy
Post by: bodoo2u on May 08, 2008, 11:16:04 AM
Old Man and Newguy,

Thanks for the advice. OM, do you have any idea what it is I'm experiencing? Have you heard of it before?

Title: Re: VED therapy
Post by: Old Man on May 08, 2008, 12:32:09 PM
boodoo2u:

No, I have not heard of any symptoms just like you are talking about. Several have said that they have had all kinds of different sensations going on withing their penises, but no one seems to know what it might be.

Strongly suspect that it might be nerve related though. There are many nerves in the groin area and they control a lot of territory in that area. So, it could be possible that a nerve is being disturbed by the plaque or something similar. Just don't know anything for sure in this area.

Old Man
Title: Re: New Feelings in the Plaque
Post by: Ptolemy on May 08, 2008, 03:30:06 PM
Yesterday I began feeling a sensation in the plaque. Following my recent hernia surgery I stopped using the VED. When I restarted two weeks ago, I began the protocol anew with two weeks on the small cylinder. I used an "in and out" motion when the vacuum was engaged, not enough where the cylinder and penis skin had movement between them but under the vacuum pressure, the movement helped lengthen the penis in the small tube. I also apply about 4 hours of Traction during the day

Yesterday, when all routines were complete, I could feel a sensation around or in the plaque. Not enough that I would call it pain but enough that it was noticeable. When I used the VED this morning, it aroused a similar feeling so I stopped the in and out action and just used the vacuum. There was no pain when I did that but later today I have the same feeling/sensation.

My approach will be to continue the use of both the VED and Traction but less aggressively using pain as the measurement. Less pain and I will maintain the same level until the sensation is gone, more pain and I will lessen the vacuum and Traction length until the sensation improves or disappears. I am reluctant to discontinue treatment but I will if the "sensation" becomes "pain."

I'll let you know how it goes.
Title: New Feelings in Plaque
Post by: bodoo2u on May 08, 2008, 04:08:36 PM
Ptolemy,

Sounds like what I'm experiencing. Is it a burning/itching sensation. I sure hope we haven't overdone it.

Unlike a lot of men here whose curves are upward, mine is to the right and the plaque estends nearly the entire length of my penis, so i have to be careful because any further damage will render me unable to have intercourse. I always said that an upward curve is better than a right or left one, because it appears to be much easier to penetrate.
Title: Penis is constantly painful
Post by: lymeboy on May 08, 2008, 08:08:25 PM
I have probably had a slow onset Peyronie's disease--that is until one day I have an hourglass bend about 1/3 of the way from the base of the shaft, a bend below the head, and decreased length and girth.  This occured about 2-3 months ago.  I am not currently sexual as it is too painful.  My penis is almost always painful--ranges from a 3-8.  I have to pee often and I feel like I have a generalized inflamation in my pelvis.  I have done some searching and can not tell if this is common or not.  If so what have you done to mitigate the pain.  At times it is quite debilitating.
thanks
Title: Lymeboy
Post by: bodoo2u on May 08, 2008, 09:22:52 PM
It sounds like you need to see a doctor as fast as you can get to one. What you are describing doesn't sound good at all-Bodoo
Title: Re: Lymeboy ...
Post by: George999 on May 08, 2008, 10:57:11 PM
Lymeboy,  With all the problems you are having, you really should consider getting checked out a university medical center with the resources to provide you with more answers.  I think that having this debilitating pain should be setting off some alarm bells somewhere indicating that you need to get a second opinion from someone who really knows what they are doing.  The whole Lyme treatment regimen is under scrutiny right now (Connecticut Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process (http://www.immunesupport.com/library/showarticle.cfm/ID/8832)), but you really need to be examined by a top notch urologist to make sure that you don't have something else going on here.  That is my opinion.  And you need to make sure that they are aware of the Lyme issue AND aware that the whole traditional Lyme treatment regimen is being questioned.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: lymeboy on May 08, 2008, 11:13:49 PM
Thanks for your responses.  I agree that I need to bump this up a few clicks.  I am usually quite proactive regarding my health care and I am at a loss.  I have been to two urologists and called one of them a couple of weeks ago and was sort of told to wait it out.  I probably need to go to Boston (I live in Maine).  i am open to suggestions if anyone knows a good doc in Bean town.  I long ago know that the traditional medical model of treatment for Lyme disease was bogus and have sought out alternative treatments.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on May 10, 2008, 10:06:49 PM
I've read several messages here from those who suddenly (or slowly) developed a curve a few months after an injury. Some of these members appear to have lost anything from under an inch to maybe 3 inches, due to scar tissue not being as stretchy as normal penile tissue. One heartbreaking story I read here involved a man who lost 3 inches in one month. It has been suggests that if they had started using a VED + traction at the early stage, their loses would have been less significant. This of course makes sense, and acting quickly has far more merits than minuses. Sadly many urologists just seem to suggest vitamin e and send patients on their way.

Take this a step further, from a hypothetical point of view, if a person was to use a very gentle stretch on their penis to their erection length (or close), without cutting off bloodflow for extended periods of time (i've seen someone mention 8 hours here), would the scar tissue be more likely to heal in that 'extended position' and hence still be weaker than surrounding tissue, but not impact length in a significant way? Personally, due to my current issue I am still holding off starting on the VED and traction for a week or 2, but for those new members joining, often with a slight or no curve developed, do you think taking such steps could reap rewards, or would be totally foolhardy?


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on May 11, 2008, 07:01:43 AM
newguy
In my case doing my own "streaching" did not help.
My thoughts as to why the VED works. If used properly it brings fresh blood to the corpora's. By using the pump, hold and release method that Old Man told me about made a lot of difference.
I have no comments on traction as I never tried it, but it seems not to give you the same healing effect as constantly bring in fresh blood several times over the session. 
Can I back that up? Only to tell you that is my opinion and what works for me.
My opinion only. Guys with traction may have a different view.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on May 11, 2008, 12:50:53 PM
jackp:  Thanks for your input. My musing was more concerning those in very early stages on peronie's without any curve at that time. I am curious to know what would happen in that situation, where it was used in a more constant and gentle precautionary style. Of course as I doubt anyone starts using such methods 'before' a possible curve emerges it's hard to ascertain, but what to others think would happen to the scar tissue/healing process in that situation.

Not related to the above point, but how open to suggest and input have the forums members found urologists? Are many of them at all open to the ideas/meds we present here ? Are any forum members, urologists?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: AR on May 11, 2008, 10:09:32 PM
Hi newguy:  Urologists open to our ideas or suggestions.. I don't think so...  Most of the guys on this site know more about Peyronies Disease than most Uros!  We do however have a great Pediatrician on board.
Best,  AR
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: tommarkey on May 12, 2008, 12:43:45 PM
AR is correct! I'm frustrated with my urologists... They don't give importance to you, just more a case to him....
Most of people here know more about Peyronies Disease than several urologists... And here you will find more attention! Be yourself the urologist (in the felt that you have to search for the several trataments)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: trussin on May 12, 2008, 09:12:22 PM
I hope I'm not breaking protocol by jumping to this forum from the new member forum.

I met with a new urologist today, and my experience left me feeling much better than the first dismissive doctor that diagnosed me with little more than a "Yep, that's Peyronie's" and a prescription for potaba and vit e.  The new doctor is in his mid 30's, I'd guess, and offered quite a bit of information (much of which I'd already researched).  At this point, I have a relatively small lump with no "bend".  The doc mentioned Levine and the associated injections (for which I see there is a separate forum).  He stated we could start them immediately and that they are most effective within the first 6 months of Peyronies Disease.  However, since I only noticed my lump a month ago, he stated that I have some time still to see where this leads.  He was unfamiliar with Pentox, but seemed interested in researching its use after I asked if he would prescribe it once I've finished my $370 supply of potaba.

After VERY briefly reading of the verapisil forum, I'm not convinced that the injections are the best course (I still have a lot of reading to do, though).  BUT, I am pleased to say I feel like I have a doctor that I can work with long term.

Tommarkey - where do you live in Brasil?  Minha esposa e brasileira.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on May 12, 2008, 10:07:28 PM
trussin: get on the pentox - I saw the top uro and thts what hes recommending -
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ocelot556 on May 13, 2008, 01:04:39 AM
Arg. I've got my first official dent. It formed in between the largest lump of plaque (the little bast--d causing the bend) and a fine line (someone likened it to piano wire) running along the top of my little fella. I've heard people make mention of dents - are they worse than lumps? I would think they are fibrosis headed in, not out, and be worried if I followed logic. But logic doesn't seem to have much to do with this problem.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on May 13, 2008, 01:25:02 AM
ocelot - have you ever used pentox??
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ocelot556 on May 13, 2008, 06:08:56 AM
I really want a prescription. Two problems: 1. I don't get health insurance until the 25th of this month. and 2. My last appt. with my urologist, last week, I mentioned "Have you ever heard of pentox?" he hadn't. "How about trental?" -- he said "Oh, trental? That's a heart medicine. It's a vasodilator?" he seemed only half certain about that last bit. He's a great guy, but I'll be doctor shopping until I can find a uro who can give me pentox and a VED prescription - but I have to wait for insurance to do so.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on May 13, 2008, 08:43:10 AM
ocolet556
Sometimes we over look our best doctors. I am having trouble keeping my testesterone level up to where it should be. The two (2) uro's I had seen about it would not give me an injection enough to bring it up to where it should be.
Right after the failed implant I was talking with my regular doctor and brough up my T problem. He said Jack I can help you with that and do the blood work.
The blood work came in very low 120 where the lowest on the scale was 250 and that was 3 weeks after a shot.
He recommended 600mg of T every three weeks. It takes two (2) shots to get that much at one time. I said Dr. B can we do 300mg every 10 days. He said sure just as long as you get 600mg over the three weeks.
I feel much better. Just had blood work again 5/2 and got a copy yesterday. T is still low 461 in a range of 250-1100.  He wants to increase the dosage and I am in the process of making an appointment to discuss what to do.
All this to say. A good relationship with a Primary Care Doctor can get you better treatment than some specialist. I even asked once to do a test on my blood work that I had been researching. I asked was he familiar with it. He said, No, but you are lets find out what it is. Great guy and willing to work with me.
My $0.02
Jackp
Title: Just had an appointment today
Post by: headinthesky on May 13, 2008, 10:12:51 AM
I've had this problem for as long as I can remember, I'm 22. Painful erections, etc. Went today, had a doppler done, first thing was getting surgury. No thanks, I have an appointment with another doctor next week for a second opinion.

Reading through the forum though, some good stuff.
The doctor wasn't very helpful though, I'm in the Buffalo NY area, trying to find someone.
He said something about a blood vessel constriction at the base?
And about "scar tissue" which needs to be cut out (he didn't mention plaque). He injected something so give an erection, but it wasn't very hard or solid, after 20 minutes. I was there for almost an hour; the doctor walked out to get a "second opinion", that doctor came in and said it would need surgery. I'm not a fan of surgery, esp after a failed one last year for something else. It's a downward curve of about 40 degrees maybe. I don't mind the curve, it's the pain and "ED" which is the main problem for me.

I think I'm gonna try the l-argenine. But fantastic discussion, I'm glad I found this place.
Title: Re: Just had an appointment today
Post by: newguy on May 13, 2008, 11:01:45 AM

Have you tried viagra? That could really help out with the ED. of course, the pain may still be a problem though. Do any of you guys have any suggestions for medications that could help out with the pain? I think the doctors manner; injecting you to get an erection + suggesting surgery, is certainly a bit hasty, if you haven't exhausted all other options first.

Oh and welcome to the froum :).


Quote from: headinthesky on May 13, 2008, 10:12:51 AM
I've had this problem for as long as I can remember, I'm 22. Painful erections, etc. Went today, had a doppler done, first thing was getting surgury. No thanks, I have an appointment with another doctor next week for a second opinion.

Reading through the forum though, some good stuff.
The doctor wasn't very helpful though, I'm in the Buffalo NY area, trying to find someone.
He said something about a blood vessel constriction at the base?
And about "scar tissue" which needs to be cut out (he didn't mention plaque). He injected something so give an erection, but it wasn't very hard or solid, after 20 minutes. I was there for almost an hour; the doctor walked out to get a "second opinion", that doctor came in and said it would need surgery. I'm not a fan of surgery, esp after a failed one last year for something else. It's a downward curve of about 40 degrees maybe. I don't mind the curve, it's the pain and "ED" which is the main problem for me.

I think I'm gonna try the l-argenine. But fantastic discussion, I'm glad I found this place.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: headinthesky on May 13, 2008, 11:15:04 AM
QuoteHave you tried viagra? That could really help out with the ED. of course, the pain may still be a problem though. Do any of you guys have any suggestions for medications that could help out with the pain? I think the doctors manner; injecting you to get an erection + suggesting surgery, is certainly a bit hasty, if you haven't exhausted all other options first.

Oh and welcome to the froum

Hey thanks  ;D

I'm going to another dr next week, hopefully he might be more thorough. I wasn't too impressed with his demeanor, when I first met him (last week) he sorta just stood around fumbling and talking. Today after the dopler, they were getting ready to schedule it - I said hey guys, let me call you back. They weren't very clear on details about the doppler either.

I'll bring viagra up with the other Dr. It's not full on ED, sorta semi-flaccid. But enough stimulation it's does go up, but it has to be continuous stimulation. They gave me a pill bricanyl (which was weird, it's mainly for bronchoconstriction?), but that was to get rid of the erection if it was still there for more than 4 ho urs. I wasn't really erect, but it was pretty painful so I took it, went away. Well I have that now to bring up next week with the other doctor. I'm making a list of stuff today from the forum, real good. But I think I'll order some of the horny goat weed and the VitE and L-argenine. Thinking about a traction or VED device but not sure.

I have a feeling if it increase blood flow, that will help. As evidenced by cold fingers, I get poor blood flow at times.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: headinthesky on May 13, 2008, 11:18:20 AM
Ignore this, sorry.
I'm looking at the posts backwards apparently  :D
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: newguy on May 13, 2008, 12:23:17 PM
headinthesky - In relation to your 'cold fingers' comment, does this apply to your toes too? Basically all of your extremities. My mother suffers from Raynaud's disease in that her extremities go numb at temperatures where other peoples wouldn't. This has happened to me too, especially with my toes, but I tend to exercise so much nowadays that I think it's had a positive impact on my vascular system. I'm not trying to claim some kind of peyronie's link here, but everything is our history is worth mentoning, and your comment spiked my interest. In any case, drugs that improve circulation will likely benefit you.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: headinthesky on May 13, 2008, 12:43:59 PM
Quote from: newguy on May 13, 2008, 12:23:17 PM
headinthesky - In relation to your 'cold fingers' comment, does this apply to your toes too? Basically all of your extremities. My mother suffers from Raynaud's disease in that her extremities go numb at temperatures where other peoples wouldn't. This has happened to me too, especially with my toes, but I tend to exercise so much nowadays that I think it's had a positive impact on my vascular system. I'm not trying to claim some kind of peyronie's link here, but everything is our history is worth mentoning, and your comment spiked my interest. In any case, drugs that improve circulation will likely benefit you.

During "normal" temps, no. But I live in cold, cold Buffalo, so winter I notice it more. It's more uncomfortable than anything, but in winter it's just dreadful, especially the toes. That's the only time I feel numbness.
I'm sure there's a link with ED and poor vascular circulation. I was reading other posts saying that frequent erections help with less fibrotic tissue forming, I'm sure that's due to the greater "forced" circulation.
I exercise quite a bit, several times a week (used to run track for 4 years), so its kinda sucks to see the ED kinda coming in.
Title: Re: Vascular links ...
Post by: George999 on May 13, 2008, 09:20:02 PM
The vascular links with all forms of ED are so strong that many docs take a pretty close look at the hearts of their patients when they develop ED of any kind.  There are some pretty strong statistical links underlying the connection.  AND many, but not all, treatments for ED line up pretty closely with treatments for cardio-vascular issues.  - George
Title: Re: Vascular links ...
Post by: headinthesky on May 13, 2008, 09:23:38 PM
Quote from: George999 on May 13, 2008, 09:20:02 PM
The vascular links with all forms of ED are so strong that many docs take a pretty close look at the hearts of their patients when they develop ED of any kind.  There are some pretty strong statistical links underlying the connection.  AND many, but not all, treatments for ED line up pretty closely with treatments for cardio-vascular issues.  - George

Yeah true. Viagra was actually supposed to be for cardiac issues...heh.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on May 14, 2008, 05:57:26 AM
Viagra and heart issues.
12/06 I had taken a Levitra the night before and woke up at 5:00 in the morning with chest pains. Wife took me to the hospital and while in the ER they put nitro on my chest and within a short while I was all but out. Blood pressure dropped real low. Good thing the doctor and a nurse were standing by me when it happend.
If you have taken V, C, or L and are having chest pains let them know when you walk in the door. It may save your life.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: tommarkey on May 14, 2008, 12:35:16 PM
It dissapointing... In 21th century, with a high advanced medicine, we don't have a non-surgical solution to this disease , and the surgical has sequels...Our best alternatives are some dangerous (for someone!) heart drugs...I hope in the next 20 years it appears...

Quote from: trussin on May 12, 2008, 09:12:22 PM

Tommarkey - where do you live in Brasil?  Minha esposa e brasileira.

Hi, I live in Curitiba, Paraná, in the south of Brasil... Probably she knows where is... Do you speak portuguese or just "Minha esposa e brasileira"? :)





Title: The glycatoin model looks like a promising solution to this quandry ...
Post by: George999 on May 14, 2008, 07:59:54 PM
Once you start to look at the glycation model, and begin to orient therapy in that direction, a lot of the conflicts disappear.  Blocking and/or reversing glycation lowers fibrosis risk, lowers cardio-vascular risk in the process AND lowers cancer risk all at the same time.  That is the advantage of stuff like Pentox and ALC, and that is the promise of drugs like Alagebrium that are currently in the pipeline.  And of course, no one has EVER shortened their life expectancy with prudent diet and exercise choices.  Aside from that, there is no magic bullet drug or supplement that doesn't bring the risk of creating other problems.  For example, Testosterone is known to be beneficial for Peyronies but it brings Cancer risks among other things.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on May 14, 2008, 09:25:26 PM
George999
Testesterone Replacement Therapy(TRT) DOES NOT CAUSE CANCER IN A NORMAL PROSTARE!!!
I do not know where you got your information, but you reminded me that when I was first diagnosed with Peronies I had low Testesterone and put on TRT.
When I started TRT over 12 years ago my PSA was .09 today it is 1.2 normal is 4 or less.
I have read articles where men that have had the prostate removed because of cancer can start TRT after a couple of years.
I get 400 mg of testesterone every 10 days and stay up on my exams and PSA every 6 months.
Your statement needs to be rephrased. IMHO
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on May 14, 2008, 11:22:13 PM
The latest and best review I read stated that testosterone does not increase cancer risks. It can accelerate prostate cancer when it is already present (I think) and folks used to think it could "trigger" "latent" (or previously undetectable) prostate cancer. The latter argument has been disproven, I believe.

Tim
Title: Re: Testosterone and Cancer ...
Post by: George999 on May 15, 2008, 11:16:24 AM
I said the use of Testosterone "brings Cancer risks".  We may be able to split some hairs on this, but it is not hard to verify that statement with some fairly authoritative sources, for example this one (http://content.nejm.org/cgi/content/extract/350/5/482).  My whole point was NOT that such therapies should not be employed, it was rather that they do have risks, whether drug or supplement.  And hormones, while potentially very useful, are known to have some pretty exceptional risks.  So I stand by my statement at this point.  BUT, I want to also make very clear that the current state of medicine requires that we on occasion take risks.  And under professional medical supervision, risks are necessary and OK.  Regular testing is done to make sure there are no unintended side effects happening.  But I believe the Glycation pathway presents a world of treatment possibilities with far fewer risks and far more global benefits.  And that is the possibility I am looking forward to in the future AND the pathway I am already attempting to exploit to the maximum.  - George
Title: Re: Testosterone and prostate cancer
Post by: Old Man on May 15, 2008, 02:00:47 PM
george:

Having had a radical retropubic prostatectomy and benefited from the ill after effects of that surgery, my take on testosterone is similar to yours. If a person has a high PSA number and is suspected or confirmed that cancer is present in the prostate, testosterone is removed from their medical regimen by whatever means is available, even to castration.

Have worked with several guys in our prostate cancer support group that did have their glands removed in order to control the cancer. They used the VED and did have at least some sexual pleasure that way. Prostate cancer is not one to play around with trying to build up one's libido by getting the shots, etc.

Just my take on the subject.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on May 15, 2008, 03:43:46 PM
George:

Quoting your NEJM reference:

"Despite decades of research, there is no compelling evidence that testosterone has a causative role in prostate cancer", and "Thus, there appears to be no compelling evidence at present to suggest that men with higher testosterone levels are at greater risk of prostate cancer or that treating men who have hypogonadism with exogenous androgens increases this risk. In fact, it should be recognized that prostate cancer becomes more prevalent exactly at the time of a man's life when testosterone levels decline. "

Regarding cancer in general, there are no data at all.

Their main concern is the potential for "unmasking" a prostate cancer that is already there, which is why there are recommendations for closely following a PSA after starting testoserone therapy. This is not splitting hairs at all. Simply put, testosterone does not "bring cancer risks" and your own citation goes to lengths to point this out.

For someone who already has prostatic cancer, the use of testosterone is a whole other matter.

I hope that anti-glycation is as useful as you think it is, but replacement of hormones like testosterone that your body is supposed to be making, and stopped making, is not likely to occur by dietary changes.

Tim
Title: Re: Testosterone ...
Post by: George999 on May 15, 2008, 09:37:00 PM
Tim,  The problem is that how many older men walk around with dormant prostate cancer?  From what I have read, dormant or extremely slow growing prostate cancer is fairly common among older men.  I consider that to be a significant risk factor.  I do not consider it to be a reason not to make use of TRT.  But it would be much better to be able to "fix" the problem upstream.  Certainly diet alone is not a solution (although diet is certainly a necessary part of the solution), but be able to aggressively attack preexisting systemic glycation which is the molecular root of many of these problems well might be.  The advantage of attacking glycation is that it has the effect of normalizing the whole body metabolism rather than just addressing one element in isolation.  In retrospect, I am sorry that I picked TRT as an example.  I could just have easily picked HGH or any number of other current approaches to treating disease states.  Someone just noted that even Maca carries a potential Cancer risk due to its ability to upregulate IGF-1.  There has just got to be a better way to treating disease and pre-metabolic syndrome/metabolic syndrome which is becoming absolutely so endemic in our society it is frightening.  So forgive me for being stubborn.  I did not intend to imply with the "risk factor" terminology that Testosterone causes cancer anymore than Estrogen causes breast cancer in women.  But they can indeed fuel preexisting cancers and that to me implies "cancer risk" although perhaps that is the wrong terminology.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on May 15, 2008, 10:44:41 PM
george999:

ive read a thread from a guy whose had Peyronies Disease for the past 6 years and no improvement although its stabilised - how come these guys dont go on pentox? surely this would be a no brainer and make sense for them to try it...??
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: newguy on May 16, 2008, 12:26:45 AM

Iceman: I was under the impression that pentox works at its best during the active phase of the condition (in my view it's important to get on it directly after injury/diagnosis). If a persons condition has been completely stable for years, I would suggest that they may not be the very best candidate for pentox. However, it could still bring about some benefits, and prevent/limit any further damage that could present itself should the condition become inflamed through further injury or over-aggressive treatment (injections, further injuries). From the standpoint of throwing everything in our power at the condition,  I certainly wouldn't dissuade anyone from using it. Just my view.

Title: Re: Active vs. Stable
Post by: Ptolemy on May 16, 2008, 12:59:37 AM
Is there any evidence that Peyronies is ever stable? Clearly not in my case. Month to month it appears stable but measurements that I make on an annual basis tell me it is still active. That is why I am taking Pentox even though I have a number of side effects from the drug.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on May 16, 2008, 01:19:53 AM
dammmm - i wish i would stabilize - the pain is really starting to piss me right off!!!!!!!!!!!!! - what i wouldnt give for 1 hour of just numbness
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on May 16, 2008, 02:34:01 AM
Ptolemy - I do think in some people, their peyronies reaches a stage I would categorise as stable, or non-changing. Of course you are right though, that for many their peyronies state is seemingly ever changing over the year of many years, which is not great for peace of mind. I would certainly class that as non-stable and think that you're wise to me taking pentox.

Iceman - As you were only diagnosed a few months back, at least you have the opportunity to get on top of this very early on. You really seem to be doing all you can in terms of oral treatments. In addition to your current regime, have you thought about taking ibuprofen for 2 - 3 weeks to try to help with the inflammation? I'm guessing you've probably already done that but thought I'd ask anyway. Also, have you started on the VED yet, or are you waiting until your pain reduces and/or a curve develops?
Title: Maca and Prostate Cancer
Post by: bodoo2u on May 16, 2008, 05:16:07 AM
Wow, I didn't know that Maca could possibly contribute to prostate cancer. I purchased a couple of bottles of Horny Goat Weed in an effort to make me fuller in the flaccid state, and the HGW has Maca in it. Is it possible to buy HGW without the Maca included. All of the HGW I see has Maca, although I can find Maca without the HGW.

What's that all about, and how much of a risk of prostate cancer does Maca actually carry?
Title: Re: Maca ...
Post by: George999 on May 16, 2008, 10:59:16 AM
Yes, Horny Goat Weed is available without Maca.  But I don't think you have subjected yourself to any significant risks.  I just was using Maca to point out the reality that most things carry some degree of risk.  I myself have been taking Maca, lots of it, for some amount of time now.  In fact, I think I was probably the one who introduced Maca on this forum originally.  I still have a significant supply of it which I will no doubt finish and I may even order more.  On the other hand, it is refreshing to be able to identify strategies that seem to carry less risk, and that is what I am attempting to do.  - George
Title: I may be crazy but......
Post by: duenorth on May 16, 2008, 11:24:25 AM
New to this forum, and i have just started taking the supplements--- l arginine, acetyl l carnitine, as well as a NOS, and also started taking petox 6 days ago.  Obviously, it is impossible to tell what effect this is having on my Peyronies, but I have noticed something else, and was wondering if anyone else had experienced something similar.  I have absolutely no untoward side effects from taking any of these things. What I have noticed though is an unexpected bonus--- my osteoarthritis symptoms are vastly improved.  This is so dramatic that it is almost unnerving. Normally i have pretty significant pain /stiffness  in a lot of joints, most notably my hands upon waking in the morning.   These symptoms are always worse when the weather is cold and damp, like it has been here all week. this The pain has lessened about 80%  Nothing in the PDR to indicate the reason for this--  although i suspect that improved microcirculation could not be a bad thing.  Anyway, just thought I would throw it out there-- see if anyone had any thoughts. 
Title: Re: I may be crazy but......
Post by: newguy on May 16, 2008, 12:24:37 PM

Osteoarthritis is basically caused by low grade inflammation, so it's heartening that pentox has proved to have such a beneficial effect on it.
Title: Re: Pentoxifylline and Osteoarthritis ...
Post by: George999 on May 16, 2008, 01:58:20 PM
Osteoarthritis is a Glycation driven disease.

Quote from: PubMedAdvanced glycation end products increases matrix metalloproteinase-1, -3, and -13, and TNF-alpha in human osteoarthritic chondrocytes.
Nah SS, Choi IY, Yoo B, Kim YG, Moon HB, Lee CK.

Division of Allergy and Rheumatology, Department of Internal Medicine, College of Medicine, University of Ulsan, Asan Medical Center, 388-1, Pungnap-dong, Songpa-gu, Seoul 138-736, Republic of Korea.

We investigated the effects of advanced glycation end products (AGE) which accumulate in articular cartilage with age in human osteoarthritic chondrocytes. We found AGE-BSA significantly increased MMP-1, -3, and -13, and TNF-alpha in a dose-dependent manner. AGE-BSA-stimulated JNK, p38, and ERK and NF-kappaB activity. The stimulatory effect of AGE-BSA on MMP-1, -3, and -13 were reversed by treatment with specific JNK, p38 inhibitors, suggesting JNK and p38 are involved in AGE-BSA-induced MMPs and TNF-alpha. We also observed that NF-kappaB is involved in AGE-BSA-induced TNF-alpha. Pretreatment with soluble receptor for AGE (sRAGE) also reduced AGE-stimulated MMPs and TNF-alpha, implicating the involvement of receptor for AGE (RAGE). In conclusion, accumulation of AGE may have a role in the development of osteoarthritis by increasing MMP-1, -3, and -13, and TNF-alpha.

PMID: 17434489 [PubMed - indexed for MEDLINE]

Pentoxifylline is an Antiglycant and inhibitor of TNF-alpha.

Quote from: PubMedEvidence that pioglitazone, metformin and pentoxifylline are inhibitors of glycation.
Rahbar S, Natarajan R, Yerneni K, Scott S, Gonzales N, Nadler JL.

Department of Diabetes, Endocrinology and Metabolism, The Leslie and Susan Gonda (Goldschmied) Diabetes and Genetic Research Building, City of Hope National Medical Center, Duarte, CA 91010, USA. srahbar@coh.org

Enhanced formation and accumulation of advanced glycation end products (AGEs) have been proposed to play a major role in the pathogenesis of diabetic complications, and atherosclerosis, leading to the development of a range of diabetic complications including nephropathy, retinopathy and neuropathy. Several potential drug candidates as AGE inhibitors have been reported recently. Aminoguanidine is the first drug extensively studied. However, there are no currently available medications known to block AGE formation. We have previously reported a number of novel and structurally diverse compounds as potent inhibitors of glycation and AGE formation. We have now studied several of the existing drugs, which are in therapeutic practice for lowering blood sugar or the treatment of peripheral vascular disease in diabetic patients, for possible inhibitory effects on glycation. We show that that three compounds; pioglitazone, metformin and pentoxifylline are also inhibitors of glycation.

PMID: 11020463 [PubMed - indexed for MEDLINE]

Quote from: PubMedPentoxyphylline and propentophylline are inhibitors of TNF-alpha release in monocytes activated by advanced glycation endproducts.
Meiners I, Hauschildt S, Nieber K, Münch G.

Nachwuchsgruppe Neuroimmunologische Zellbiologie, IZKF Leipzig, Germany.

Non-enzymatic glycation of proteins with reducing sugars and subsequent transition metal-catalyzed oxidation leads to the formation of protein-bound "advanced glycation endproducts" (AGEs). They accumulate on long-lived protein deposits inducing senile plaques in Alzheimer's disease. AGE-modified proteins are able to activate microglia and astroglia and can cause chronic inflammation. The aim of the present study was to confirm the stimulatory effect of different AGEs on TNF-alpha release in human monocytes. Furthermore, the effects of four xanthine derivatives on AGE-induced TNF-alpha release were investigated. We show that chicken egg albumin-AGEs prepared with glucose and chicken egg albumin-AGEs prepared with methylglyoxal dose-dependently induce TNF-alpha release. The xanthine derivatives pentoxyphylline and propentophylline attenuate AGE-induced TNF-alpha release in a dose-dependent manner. Theophylline at low concentrations slightly stimulated TNF-alpha release whereas caffeine had no effect. The inhibition of the AGE-induced TNF-alpha release by pentoxyphylline and propentophylline provides interesting pharmacological strategies for diseases with local neuroinflammation such as Alzheimer's disease.

PMID: 14991464 [PubMed - indexed for MEDLINE]

There is your link.  All of these diseases lead back to Glycation and Advanced Glycation End products.  When you attack on the level of Glycation you "risk" knocking out multiple afflictions in one sweep.  That is why I am such a strong advocate of Pentox and other AntiGlycation strategies.  Acetyl L Carnitine is also an Antiglycant.  And if you are successfully increasing your Nitric Oxide levels with the Arginine, guess what?  Nitric Oxide attacks Glycation as well.  So perhaps you have ended up with a perfect storm here!  Congratulations!  - George
Title: Re: Pentoxifylline and Osteoarthritis ...
Post by: newguy on May 16, 2008, 03:18:29 PM
Great research George. It's very reassuring when the pieces of the jigsaw start to come together.
Title: Question about Injections!
Post by: jsotheby on May 17, 2008, 02:48:24 PM
I am 29 y/o and believe I have diffuse fibrosis with Peyronies Disease-like symptoms (shrinkage, slight curvature, loss of sensation, severe impotence).  Pills don't really work at all and I am thinking about using injections.

I was just wondering if anyone knows if potentially I wanted to conceive a child with a woman, whether the injectable substance could be potentially dangerous. 

If anyone knows or has experience with this I would appreciate the input.

Thanks.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jmaxx on May 17, 2008, 07:36:46 PM
Quote from: Tim468 on April 15, 2008, 01:00:49 PM
Jack,

The history of Propecia may be quite important - we have heard more than once here of it being related to (and perhaps causing) Peyronie's Disease. When the effects of testosterone are blocked, one possible outcome is fibrosis. You may want to get a complete sex hormone assay done, including testosterone and sex hormone binding protein levels. In the meantime, you may help with erectile quality and with the Peyronie's by using the VED on a regular schedule (daily) as discussed in that thread. Additionally, some of us use Horny Goat weed which is a Prostoglandin inhibitor like Viagra that has anti-inflammatory effects and enhances erectile quality. If taken at therapeutic doses - it is about one tenth as strong as viagra, so a person who responds to 100 mg of viagra would need to take 1000 mg of HGW. If you look carefully at most labels, though, it will say something like "500 mg" per dose, but the dose is two capsules, and the "active icariin dose" is one tenth of the milligrams listed. Thus a 500 mg dose of HGW is really 50 mg of icariin in 2 capsules. If I take 20 capsules of HGW, that is delivering 500 milligrams of icariin, which is equivalent to 50 mg of viagra. In my experience it does not wokr as well, but i have almost no side effects excpet mild nasal stuffiness.


Just my two cents worth.

Tim

I don't know Tim.  You shouldn't make a blanket statement "prostaglandins are something to inhibit by taking HGW and Viagra." 

Prostaglandins, for practical purposes, can be classified in three groups, depending on which fatty acid they were made from. Series 1 prostaglandins use linoleic acid as the starting point, while Series 3 prostaglandins use linolenic acid as the base fatty acid. Series 1 and 3 prostaglandins are considered the "good" prostaglandins, while Series 2 are considered the "bad" prostaglandins.

Series 1 prostaglandins are made from gamma linoleic acid (whose parent fatty acid is linoleic acid). This series of prostaglandins relax blood vessels, improve circulation, lower blood pressure, decrease inflammation, improve nerve function, regulate calcium metabolism, improve T-cell function, and lastly, prevent the release of something called "arachidonic acid" from cells. Arachidonic acid, or AA, is what Series 2 prostaglandins, or the "bad" prostaglandins, are made from.

Series 2 prostaglandins promote platelet aggregation (clot formation); inflammation; sodium retention; and  may influence heart disease, blood clots, increased cortisol production, etc.. Reducing prostaglandins series 2 is a good option to stay healthier.

Series 3 prostaglandins are formed from the fatty acid found in fish oil: EPA (whose parent essential fatty acid is linolenic acid). The most important job of Series 3 prostaglandins is to prevent AA from being released by cells, thus preventing the production of bad Series 2 prostaglandins.

The smooth muscles in the penis produce TGF-B1, a component of the immune system, and one of its roles is to produce collagen. Collagen contributes not only to structural tissue in the body, but is also the material that comprises scar tissue. Prostaglandin E1, among its other functions, opens blood vessels and suppresses collagen production. There is some evidence that when oxygen levels become too low, TGF-B1 production increases and prostaglandin E1 production decreases.  If this last statement is true why would, as you suggest, we want to "inhibit prostaglandin" when a prostaglandin E1 decrease is part of the process that promotes peyronie's?

And I thought the research shows taking HGW and Viagra is not for "inhibiting prostaglandins" as you say, it is to fight the progression of plaque via inhibiting Transforming Growth Factor Beta 1 (TFG-B1)
Title: Canadian Pharmacies use by Americans
Post by: jmaxx on May 17, 2008, 07:52:01 PM
Has anyone here from the U.S. successfully used a Canadian pharmacy for Cialis or Viagra?  

Title: Re: Question about Injections!
Post by: jackp on May 17, 2008, 08:25:39 PM
Injections for ED. DON'T DO IT!!!! :(
Like you pills did not work for me. At your age you do not want to go on testesterone replacement therapy (trt). I could cause you not to be able to conceive a child. Check with a good urologist. If all else fails put some sperm in a sperm bank.
The problem with injections for ED is corporal fibrosis. I'm 65 and had a failed implant last October because of corporal fibrosis from injection therapy for ED. You can go to the Surgery section and go back and read the story.
Have you had a color doppler? A color doppler will tell if you have Venous Leakage or not.
At your age I would start out with a VED for erections. Old Man has the right way to use one under the VED section. A word of caution if used wrong it can cause damage that will take weeks to heal.
There is lots of information on this board. Any questions just ask.
Jackp
Title: Re: Tim / Prostaglandin
Post by: George999 on May 17, 2008, 11:24:36 PM
jxyz,  I think Tim meant to write phosphodiesterase and inadvertently wrote prostaglandin instead.  In other words, I think this is a typo on Tim's part.  Prostaglandin E-1 is actually used pharmaceutically for the same purpose as Viagra is, you certainly would not want to inhibit it.  But you would want to inhibit phosphodiesterase-5 and that is exactly what both Viagra AND HGW accomplish.  - George
Title: Re: Question about Injections!
Post by: jsotheby on May 18, 2008, 12:44:59 AM
Thanks for the advice.

Just to be clear I was talking about injections of alprostadil or trimix.  Is that what you are referring to as well?  I was not talking about testosterone just to be clear.

If no injections, how should I expect to be able to have sex though?  That is my dilemma.
I really don't want to use a ved at my age.


Does anyone know about whether the alprostadil or trimix cream will work or not?
Title: Re: Question about Injections!
Post by: jackp on May 18, 2008, 06:07:59 AM
Sorry about the rant against injection therapy for ED. Yes PGE1 (Edex) and trimix is what I am talking about. It caused me to have a bad case of corporal fibrosis. Corporal fibrosis will make ED symptoms worse as well as penile shortening and loss of feelings.
Pills did not work for me either. I tried injection therapy for over a year with little to no help. I was on the strongest dose of trimix the have and using 10 units, with the smallest needle.
With your symptoms you need to go to the urologist and have a color doppler to make sure you have venous leakage. Then make a plan of action.
I understand that younger men do not like the idea of VED or implants. That being said VED therapy will help you a lot. I lost 1.25" to low testesterone, Peronies, ED, Venous Leakage and corporal fibrosis. With the help of Old Man on the VED section I have gained back 1/4 to 1/2 inch in length. It is a excellent exercise and gets the fibrosis loosened up.
You will need a lot of support from a good urologist and your partner. Be open and honest with your partner and you will be rewarded with support and more love than you can imagine.
I mentioned testesterone therapy only because you said you wanted a child. TRT will shut down the ability to father a baby. You do need your testesterone checked to know where you are for later.
I understand the dilemma of how to have sex. If pills do not work about the only option is a VED. Once you learn how to use it it will not be a problem and your partner will understand if you are open and honest about it.
Sorry, there is no cream that I know of that will work.
Just remember you are not alone in this. There are many here that will answer any questions you have. Go to the VED section and get Old Man to help with a VED. I did and now have a sex life back.
Jackp

Title: Re: Question about Injections!
Post by: Old Man on May 18, 2008, 09:32:12 AM
jsotheby:

You had best listen to JackP about injections. It does not matter what the injections into one's penis is for, it is the same for any meds injected.  It is the penetration of the tunica and erectile tissue that becomes the problem. If one is inclined towards Peyronies Disease or other penile conditions, the needle will cause the damage. A healing process takes place each and every time the area is penetrated. This in itself can and will most likely cause some form of scar tissue. It takes time for these penetrations to heal so therefore there is cause for caution in getting injections for any purpose.

I had 12 injections of Verapamil for Peyronies Disease therapy and each one cause a nodule that took many months and therapy with various means to get rid of successfully. Thankfully, the VED seemed to be the best weapon of choice for me in that regard.

There are posts on this forum that present the problems guys have had with injections, so please read up on the previous posts by using the key word injections in the search engine link.

So, bottom line, if you do choose to get injections in your penis for any reason, be aware of this problem and watch the after effect closely for problems.

Old Man
Title: Re: Question about Injections!
Post by: Tim468 on May 18, 2008, 12:26:57 PM
When I hear of diffuse fibrosis, loss of sensation, ED and curvature, I first wonder about low testosterone. I hope that you have had a good workup by a urologist.

If you had an injury (like prolonged erection with subsequent damage to the corpora) then you might be a good candidate for Pentox therapy.

Although the VED may not help (or work emotionally) for you when it comes to sex. you might still benefit - greatly - from using it on a daily basis.

If you have any remote chance of recovery of function and shape, it is going to come from:VED use daily, probable use of Pentox, and a diagnosis - if at all possible - for why this is happening (or why it happened).

For sex, it is probably worth a trial of one injection to see if you have adequate blood flow under any circumstances to allow for a "natural" erection. If you have tried tri-mix of something, and it gave you an erection, then you may want to think about whether or not it is for you (if it does not work at all, then you don't even have to think about using it).

In general, the use of a VED is perhaps more intrusive. I am not sure if "pumping up" is always more apparent than an injection, but I can see the possibility of shooting up in the bathroom and within ten minutes hopping in the sack feeling ready to go.

A couple of more thoughts... if priapism led to an injury, risking tht again with an injection might compound damage. Second, if trauma led to the diffuse fibrosis, then injections (as others have mentioned loudly here!) can (and often will) lead to more fibrosis.

Overall, most of us find injections to be traumatic, because we are men with Peyronie's and our penises do not respond well to being poked!

As for the question you asked, I can find no data regarding birth defects or fertility.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on May 18, 2008, 12:28:52 PM
George got it right - I meant to write phoshodiesterase inhibitor.

Tim
Title: Re: Question about Injections!
Post by: jsotheby on May 18, 2008, 01:45:12 PM
Thanks a lot for all the feedback.

I will definitely read up on ved.  I have lost 3 cm also and would like to restore as much length as possible.  That would be great.  Can someone tell me basically how ved allows that?

Also, what perplexes me is that I have had ultrasound and caverno and neither shows any problem of leakage.  Does anyone know whether it was dangerous to have caverno by the way if there is diffuse, undetectable fibrosis?

Regarding whether the injections work, I know they do as a relatively small amount of tri-mix worked really, really well in the doctor's office as far as producing a long erection that needed to be drained.  I realize that could degrade over time, but I do know that they work.

I don't think I could get myself to do that, anyhow, but I was thinking it would allow for more spontanaiety and would be easier for women my age to accept.  TOo bad you can't just inject it somewhere else in your body.

All of these problems happened when I injured myself by losing the grip on the band on my underwear which snapped back and sort of crushed the erect penis against the pelvis.  It caused a sharp pain and detumescence and over the next month the situation deteriorated.

I was referring to a new tri-mix gel that just came out and another pge1 gel that is coming out this summer.  Any reason to be optimistic that combined with maximum strength viagra it might work?

Also, anyone know whether gene therapy will work at all on these injuries?

Thanks alot.  I appreciate the help.
Title: Aloe Vera, A Potential Key in Dealing with Collagen ...
Post by: George999 on May 18, 2008, 05:16:59 PM
There are a number of interesting studies that highlight the unique capability of Aloe Vera to correct Collagen anomolies:

QuoteLife Sci. 2003 Jan 3;72(7):84350.
Inhibition of collagenase and metalloproteinases by aloins and aloe gel.
Barrantes E, Guinea M.
Department of Pharmacology, School of Pharmacy, University of Alcala, Ctra. MadridBarcelona Km 33.6, 28871 Alcala de Henares, Spain.

The effects of Aloe barbadensis gel and aloe gel constituents on the activity of microbial and human metalloproteinases have been investigated. Clostridium histolyticum collagenase (ChC) results dosedependently inhibited by aloe gel and the activityguided fractionation led to an active fraction enriched in phenolics and aloins. Aloins have been shown to be able to bind and to inhibit ChC reversibly and noncompetitively. Aloe gel and aloins are also effective inhibitors of stimulated granulocyte matrix metalloproteinases (MMPs). The remarkable structural resemblances between aloins and the pharmacophore structure of inhibitory tetracyclines, suggest that the inhibitory effects of aloins are via an interaction between the carbonyl group at C(9) and an adjacent hydroxyl group of anthrone (C(1) or C(8 )) at the secondary binding site of enzyme, destabilizing the structure of granulocyte MMPs.

QuotePhytother Res. 2002 Dec;16(8 ):7128.
The influence of longterm Aloe vera ingestion on agerelated disease in male Fischer 344 rats.
Ikeno Y, Hubbard GB, Lee S, Yu BP, Herlihy JT.
Department of Physiology, University of Texas Health Science Center, San Antonio, Texas 782293900, USA.

The effects of longterm Aloe vera ingestion on agerelated diseases were investigated using male specific pathogenfree (SPF) Fischer 344 rats. Experimental animals were divided into four groups: Group A, the control rats fed a semisynthetic diet without Aloe vera; Group B, rats fed a diet containing 1% freezedried Aloe vera filet; Group C, rats fed a diet containing 1% charcoalprocessed, freezedried Aloe vera filet; and Group D, rats fed the control diet and given whole leaf charcoalprocessed Aloe vera (0.02%) in the drinking water. This study demonstrates that lifelong Aloe vera ingestion produced neither harmful effects nor deleterious changes. In addition, Aloe vera ingestion appeared to be associated with some beneficial effects on agerelated diseases. Groups B exhibited significantly less occurrence of multiple causes of death, and a slightly lower incidence of fatal chronic nephropathy compared with Group A rats. Groups B and C rats showed the trend, slightly lower incidences of thrombosis in the cardiac atrium than Group A rats. Therefore, these findings suggest that lifelong Aloe vera ingestion does not cause any obvious harmful and deleterious side effects, and could also be beneficial for the prevention of agerelated pathology. Copyright 2002 John Wiley & Sons, Ltd.

QuoteIndian J Exp Biol 1998 Sep;36(9):896901
Influence of Aloe vera on collagen turnover in healing of dermal wounds in rats.
Chithra P, Sajithlal GB, Chandrakasan G.
Department of Biochemistry, Central Leather Research Institute, Adyar, Chennai, India.

Treatment of fullthickness wounds with A. vera, on rats resulted in increased biosynthesis of collagen and its degradation. A corresponding increase in the urinary excretion of hydroxyproline was also observed. Elevated levels of lysyl oxidase also indicated increased crosslinking of newly synthesised collagen. The results suggest that A. vera influences the wound healing process by enhancing collagen turnover in the wound tissue.

QuoteMol Cell Biochem 1998 Apr;181(12):716
Influence of Aloe vera on collagen characteristics in healing dermal wounds in rats.
Chithra P, Sajithlal GB, Chandrakasan G.
Department of Biochemistry, Central Leather Research Institute, Adyar, Madras, India.

Wound healing is a fundamental response to tissue injury that results in restoration of tissue integrity. This end is achieved mainly by the synthesis of the connective tissue matrix. Collagen is the major protein of the extracellular matrix, and is the component which ultimately contributes to wound strength. In this work, we report the influence of Aloe vera on the collagen content and its characteristics in a healing wound. It was observed that Aloe vera increased the collagen content of the granulation tissue as well as its degree of crosslinking as seen by increased aldehyde content and decreased acid solubility. The type I/type III collagen ratio of treated groups were lower than that of the untreated controls, indicating enhanced levels of type III collagen. Wounds were treated either by topical application or oral administration of Aloe vera to rats and both treatments were found to result in similar effects.

QuoteInfluence of aloe vera on the healing of dermal wounds in diabetic rats
Chithra P.; Sajithlal G.B.; Chandrakasan G. G.
Chandrakasan, Department of Biochemistry, Central Leather Research Institute, Adyar, Chennai 600 020 India
Journal of Ethnopharmacology (Ireland) , 1998, 59/3 (195201)

The positive influence of Aloe vera, a tropical cactus, on the healing of fullthickness wounds in diabetic rats is reported. Fullthickness excision/incision wounds were created on the back of rats, and treated either by topical application on the wound surface or by oral administration of the Aloe vera gel to the rat. Wound granulation tissues were removed on various days and the collagen, hexosamine, total protein and DNA contents were determined, in addition to the rates of wound contraction and period of epithelialization. Measurements of tensile strength were made on treated/untreated incision wounds. The results indicated that Aloe vera treatment of wounds in diabetic rats may enhance the process of wound healing by influencing phases such as inflammation, fibroplasia, collagen synthesis and maturation, and wound contraction. These effects may be due to the reported hypoglycemic effects of the aloe gel.

So even though Aloe Vera inhibits Collagenase, it stimulates Collagen turnover, which is what we need to occur.  How Collagen turnover can be increased at the same time Collagenase is inhibited is a mystery, but these reports do seem to make clear that Aloe Vera is capable of rebuilding healthy tissue.  - George
Title: Can Pentox Destroy Libido and Sensation?
Post by: jsotheby on May 20, 2008, 01:10:26 AM
ON Wednsesday, I too two Pentox for the first time.  I had been experiencing the best sensitivity I have since injuring myself several months ago.  W/in 1 hour of taking the first one, my libido fell off the planet.  It hasn't come back and my penis is totally numb.  I went from having vastly improved sensitivity, I believe due to daily viagra, to pentox-induced total numbness and lack of libido.

I literally was ok in the morning, took the pentox, and turned into a totally asexual, afeeling human being.

I don't know what to do.  I KNOW it was the pentox.  Will it likelly return?
Title: Re: Can Pentox Destroy Libido and Sensation?
Post by: newguy on May 20, 2008, 01:16:13 AM
jsotheby -  Maybe it's linked to stress and worry about using pentox for the first time, though it's hard to be sure. Personally, in your shoes, I would stick with it for a week or two and see if the situation changes.
Title: Re: Can Pentox Destroy Libido and Sensation?
Post by: jsotheby on May 20, 2008, 02:44:19 AM
It is absolutely not stress.  I wasn't worried at all about using it b/c I stupidly thought it wasn't dangerous.  I could physically feel my libido diminishing and the numbness has worsened to the point where 5 days later I can't feel any sensation on the shaft and have zero orgasm feeling.
Title: Re: Can Pentox Destroy Libido and Sensation?
Post by: newguy on May 20, 2008, 04:38:55 AM
How unusual. Could it be reacting with other medication that you're taking?

If you genuinely feel that sensation has dramatically altered, I would consider stopping taking it for a while and seeing if the sensations returns. Pentox is typically well tolerated in my experience, there are exceptions of course, but this one is new to me. I can understand why you'd be concerned if this has gone on for five days now. Maybe it's just not for you and you could instead concentrate on ALC and other non prescription drugs. Either that or try a reduced pentox dose.


Title: Re: Aloe Vera, A Potential Key in Dealing with Collagen ...
Post by: newguy on May 20, 2008, 06:07:29 AM

George999 - I certainly agree that Aloe Vera can be useful. I added it to my supplement arsenal recently. Luckily, touch wood, I have very few negative side effects from any supplement or medication I have taken.. ALC makes my urine smell really bad though... but I can survive that :).

Title: Re: Can Pentox Destroy Libido and Sensation?
Post by: jackp on May 20, 2008, 06:47:27 AM
Jostheby
Viagra and saw palmetto caused a loss of feelings and difficult ejaculation for me.
I stopped both in January and now have much better feelings and ejaculation is much better.
It may be that the Viagra is reacting with the Pentox. Viagra has a known side effect of difficult ejaculation.
jackp
Title: Re: Can Pentox Destroy Libido and Sensation?
Post by: jsotheby on May 20, 2008, 06:08:45 PM
Thanks.

How long did it take for your sensation to return after Saw Palmetto (I read that can do it).

It has been 6 days now and I mean it is so severe and so sudden.  I had difficulty with sensation and libido when I first injured my penis.  Then I took nightly viagra for 2 1/2 months and whether by coincidence or not it improved my funcitoning and sensation.  Then I took two pentox and I mean almost instantly I went from being very horny to almost asexual.

I scored perfectly on a biothesiometry (nerve test) with Levine in late April.  Levine prescribed the pentox for me.  I'm thinking of having the test again to compare.  I feel like I'm only getting 10-20% of sensation now.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on May 20, 2008, 07:32:10 PM
george - just bought aloe vera - and theres 100mg per tablet - is this enough?? thats all they had - if I need to up the dosage should I just take 5 tabs a day???
Title: Re: Aloe Vera ...
Post by: George999 on May 20, 2008, 07:53:08 PM
Quote from: Iceman on May 20, 2008, 07:32:10 PM
george - just bought aloe vera - and theres 100mg per tablet - is this enough?? thats all they had - if I need to up the dosage should I just take 5 tabs a day???

Its a good place to start.  Just begin slowly.  Take one, wait a few days, take another, until you are at one per day.  Then stay there for a few weeks and try increasing to two per day.  Eventually you will find stronger pills out there which you can try.  The important thing is to try slowly and make sure you have no adverse effects from it.  - George
Title: Re: Can Pentox Destroy Libido and Sensation?
Post by: George999 on May 20, 2008, 07:57:44 PM
jsotheby, This sounds really strange for Pentox to cause something like this.  I HOPE you have contacted Dr. Levine about it.  It is always possible that it is coincidental that it came at the same time as you started the Pentox.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Irish05 on May 20, 2008, 08:08:11 PM

I'm about to go to another urologist for a second opinion and had a couple questions. First off, I've had this disease for about a year now, currently taking Vitamin E and acetyl L carnitine and have not seen any improvement, it actually seems to be getting worse. My first urologist told me it would heal itself over time and to not worry. After I did my own research on certain prescriptions I called him back and he won't prescribe me anything, saying none of them will work.

After looking at this site I see a couple of routes with prescriptions(Potaba, Pentox, Trental 400). I'm not even thirty years old and I think my best option would be Potaba.  Is Pentox only used for problems with ED and Peyronies, because I don't have a problem with ED, and I don't see a whole lot on Trental 400? I guess my first question is how long should you try those prescriptions before realizing that they aren't going to work? Also, has anybody taken them together?

What are some questions I should be asking my urologist besides how bad he thinks it is and what prescriptions I could take. Are there any tests I could do to see how far along or damage this disease has caused? Any input is much appreciated.

Thanks
Title: Re: Can Pentox Destroy Libido and Sensation?
Post by: jackp on May 20, 2008, 08:28:51 PM
I was taking Saw Palmetto for 12 years. It took about 3 months for the effects to go away.
Started slowly so do not get discouraged.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on May 20, 2008, 10:14:36 PM
Irish05,

Don't give up...   I know it isn't easy but find a uro who specializes in Peyronies Disease and just doens't add it to the list of diseases on the door. I repeatedly get disappointed hearing uro's who say "this will fix itself".....   it doesn't. And over time the plaque can calcify meaning it turns into something comparable to bone. While there isn't a "for sure" cure, there are serveral therapies that can be tried. I think there are about a half dozen or so doctors across the U.S. that specialize in this. Search the internet for published case studies on Peyronie's and you will find a few university hospitals that are doing research for Peyronies Disease. If you are anywhere close to the midwest I personlly recommend Dr. Levine....   Rush Univeristy in Chicago.

There are several on this site who tend toward the vacuum therapy as they have had success with it. Traction, oral meds, verapamil injections, surgery, etc. are all possible options with their own set of risks.
Title: Re: Irish ...
Post by: George999 on May 20, 2008, 10:32:32 PM
Irish,

1)  The active forms of Vitamin E are Gamma-Tocopherol and the Tocotrienols.  The common synthetic Alpha-Tocopherol form is useless in my opinion.

2)  ALC does work, but it takes a LONG TIME.  Progress is measured over years, not weeks.

3)  There is at least one study showing Potaba to be effective and some of those who have used it have found it to be beneficial.  Potaba takes a LONG TIME to be effective, once again, progress measured over years, not weeks.

4)  There is research showing Pentoxifylline to be effective and there are some who believe they have gotten results with it.  Pentoxifylline is the generic form of Trental which was the original patented product.  Pentoxifylline is an old drug that is now off patent.  It is fairly well understood and very safe.  It has numerous studies behind it indicating effectiveness against various forms of fibrosis.  Like the above two substances, it takes literally years to work.

Peyronies is the result of penile fibrosis and is VERY DIFFICULT to effectively treat.  You are doing well if you keep it from getting worse.  There is NO solution available that produces fast and spectacular results.  Everything is LONG TERM.  The cause of the whole thing is a complicated process known as Glycation wherein sugars become abnormally and permanently bound to tissue protein and result in a loss of tissue flexibility and elasticity.  This can only be corrected by 1) halting the Glycation process AND encouraging protein turnover thus GRADUALLY correcting the problem.  The above substances ASSIST in this process by halting Glycation.  Aloe Vera may help by accelerating protein turnover.  Or 2) by removing the sugars from the tissue protein.  There are a number of new drugs, including Alagebrium Chloride that have this capability at least to a degree.  Alagebrium is now meandering its way through Phase II trials to assess its safety and effectiveness.  Other such products are in the pipeline behind it.  Also be aware that there are other non-drug options that have been shown to be effective in interrupting this process, notably the VED.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on May 21, 2008, 12:35:08 AM
George, like a television commentator saying "the alleged perpetrator", I really think you ought to qualify what you say about glycation. To present it as THE reason for fibrosis is, simply put, probably wrong. It may well be ONE of the reasons for fibrosis, but it almost certainly (biologically speaking) cannot be the only reason for it. Almost nothing can be THE reason for something as biologically diverse as this disease.

For instance, in pulmonary fibrosis wherein the expression of TGF may vary greatly depending on genetic diversity, For instance, one can assay for "genetic modifiers" that demonstrate increased production of TGF beta in cystic fibrosis, and correlate it to more aggressive pulmonary disease. But it is only one of many forces driving pulmonary damage in that complicated disease.

In Peyronie's it may be much more simple biologically, but there is simply not enough data to claim any one cause of the problem. Given the long and storied history of very smart theories of disease in medicine that have not been proven to be true, it always makes sense to take pause when a new idea comes along.

Just my two cents worth.

Tim
Title: Re: Glycation ...
Post by: George999 on May 21, 2008, 10:51:27 AM
Tim, What I am asserting is that the Glycation process forms the framework of fibrosis.  It is, if you will, the molecular underpinning of the whole thing.  Certainly, that allows for a lot of variation in terms of what actually triggers that process in various individuals and as to where that process goes in various individuals.  The huge opportunity here is that the Glycation itself is a generic target.  And if you can even limit it, you can make an impact.  On the other hand, the genetic aspect, which likely makes one more vulnerable to the Glycation process, or tends to drive one form of Glycation as opposed to another, is FAR more difficult to either target or treat.  So why not highlight the opportunity?  One thing is proven and that is that there is a clear relationship between AGEs and fibrosis.  Also being proven with Alagebrium right now is the fact that attacking those AGEs produces results in terms of reducing fibrosis.  Are there other potential models for treatment?  Of course.  Are there other vectors (reasons) feeding the development of fibrosis?  Again, of course.  But exploiting any of those models or vectors is only going to result in a reduction in Glycation and AGEs in the end.  The whole thing always comes back to Glycation.  Its the molecular reality beneath the abnormal physiology.  So why not attack it directly?

On the other hand, what I am trying to get across to Irish and others posting to this forum is the reality that dealing with Peyronies or ANY other form of fibrosis is a LONG process.  I find it sad to see that people tend to jump from one false hope to another and easily give up on treatments that offer long term relief.  As long as Peyronies is presented as a "mystery" disease, people will be tending to jump from one miracle cure to another.  But once people understand the reality of what is going on under the surface, they have the opportunity to become focused on fighting the real underlying process and perhaps saving not only their penis, but their heart as well.    - George
Title: Re: Plaque
Post by: Ptolemy on May 21, 2008, 02:51:33 PM
I've recently read a couple of posts (Iwillisjr below) about plaque calcifying over time. I don't recall reading about this previously and have thought of plaque as a common problem existing in a somewhat common form. This calcification is a concern to me because I seem to have the very slow painless growth version of Peyronies and the plaque is now a good inch and one half long. Is it softer or harder is difficult to know. Is it stretching rather than growing with my treatment?

A couple of question for anyone to respond to:

One:
How can we determine if our plaque is calcifying? My plaque feels like there is soft material around a hardened mass, the mass feeling much like the drawings I've viewed of Peyronies. Obviously mine is the only plaque I've felt.

Two
Is the treatment any different if we have a softer plaque rather than a hardened or calcified version?

Three
It would appear that guys like Old Man and others who struggled with the disease for years must have had some calcified plaque which if I understand was eventually resolved. Is calcified plaque repairable, but simply takes a longer time?

Four
Is massaging the plaque rather aggressively something that has been tried? If plaque is somewhat like "scar tissue" my understanding is that massaging is a good thing. Or are drugs, VED and Traction the limit we should apply to plaque?

Any thought or comments on this would be appreciated.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Irish05 on May 21, 2008, 05:10:53 PM
George999,

Thanks for your feedback. You indicated that most treatment options are long term. However, I have read that it is important to catch this disease early for possible treatment options. I guess my question is what kind of things should I be trying in the early stages of this disease? I still have hope that it can improve since the disease is still developing.
Title: Re: Irish ...
Post by: George999 on May 21, 2008, 07:29:41 PM
Irish, The reality is ALL treatment options are long term.  There simply are NO quick fixes for Peyronies.  But you are correct, the more you throw at it early on the better off you will be.

Things to try:

1)  Diet.  My first recommendation is to get your diet under control.  Get off of calorie dense refined carbs and on to a nutrient dense diet.  I recommend DashDiet (http://www.dashdiet.org) and RealAge (http://www.realage.com)  for dietary advice.  I avoid sweets 100% including no calorie sweeteners because sweets tend to make me hungrier causing me to eat more which is bad for my health.

2)  Exercise.  My second recommendation is plenty of exercise.  Its good for both body and mind.

3)  Supplements, drugs, VED, etc.  The VED works, Pentoxifylline works, ALC works.  They just work slowly.  You have to keep at it.  Aside from that, there is an endless list of things that MIGHT be helpful.  But start with the above and do a lot of reading on this forum and you will gradually pick up on the things that are helpful for you.

- George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on May 21, 2008, 10:58:28 PM
guys - spoke to soon - i thought the pain had gone but its reared its ugly head today......what to do????

grin and bear it i guess:(  --- i am getting very very pissed off with this pain and its driving me f#@$ing mental!!!!!!!!!!!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on May 21, 2008, 11:33:48 PM
George, my point is that I do not believe that "The whole thing always comes back to Glycation."

That may play a role in some forms of fibrosis, but it does not IMO explain all fibrosis.

Saying that "fish fertilizer always leads to greener grass" (arguably true, I think)  is not equivalent to saying "green grass is always due to fish fertilizer". Sometimes it's BS that makes it green  ;D

I think that for this disease, there HAS to be more. Otherwise why would not all tissues in the body be fibrosing like the tunica. And I mean really fibrosing, not some sub-clinical thing that is hard to see.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: newguy on May 22, 2008, 12:53:47 AM

Did anything change that could explain the change? If not, I guess it's a case of sticking with supplements and meds and hoping for the best.

Quote from: Iceman on May 21, 2008, 10:58:28 PM
guys - spoke to soon - i thought the pain had gone but its reared its ugly head today......what to do????

grin and bear it i guess:(  --- i am getting very very pissed off with this pain and its driving me f#@$ing mental!!!!!!!!!!!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on May 22, 2008, 01:54:06 AM
nothing changes just spoke to soon - in heaps of pain
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ocelot556 on May 22, 2008, 03:22:35 AM
An unusual situation is happening to me right now - the other day my penis felt hard and rubbery near the site of the largest plaque - it felt as if the plauqe was blocking or pinching the nerver, and when I touched the skin it felt the way it does when you touch a hand that's fallen asleep.

I did something unusual in that I didn't freak out and take it as a sign that my sex life is over (which at 24, sometimes it feels like it is given that I'm so unlucky as to have this happen so young) so I waited.

Now, however, it seems as if the feeling is returning to the area with the plaque but the "numbness" has moved up to the head of my penis. It's not as pronounced as it was over the plauqe, I can still feel sensations, but they're dulled. I'd say I'm at 60 percent sensitivity.

Does this make any sense? I haven't heard anything about this, and I apologize for the pseudo-crosspost, but I'd like to hear if this is unusual. 5 days until I get my health insurance, and counting...
Title: Re: Pain ...
Post by: George999 on May 22, 2008, 11:30:50 AM
Iceman, This is not new to me.  When mine first started, I had intense pain for weeks.  In retrospect, I wish I had been more aggressive in trying to attack inflammation with everything from supps to cold packs, but at the time, I didn't have a clue as to what was going on.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: tommarkey on May 29, 2008, 04:47:53 PM
Someone knows where in the internet is the story of the patient that had improvement in Peyronie's taking Pentox? The first, that generate the hopes in this drug in Peyronies Disease....
I already read this story, but i'm not finding it again...
I want to show to my father

For whom is already taking >
Pentox cause influence in the fisical activities? like sports...
I'm thinking that maybe is not recommended taking pentox and after run, swin, play soccer, these things...


Thanks,
Tommarkey
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: bodoo2u on May 31, 2008, 08:08:37 AM
Fellas,

I recently discovered that my White Blood Cell count is low (3.5 when the lower limit should be 4.5) and I went on line to find out what the problem might be. Of course I have a follow-up appointment, but I wanted to do a little research in the meantime. One of the sites that google led me to was the Mayo Clinic's site, which is where I read this:

QuoteLow numbers of WBCs (leukopenia) may indicate: bone marrow failure (for example, due to granuloma, tumor, fibrosis) presence of cytotoxic substance collagen-vascular diseases (such as lupus erythematosus) disease of the liver or spleen radiation

Do any of you think the collagen and fibrosis from Peyronies Disease can be causing the low White Blood Cell count?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on May 31, 2008, 12:50:03 PM
Tom - I occasionally look through posts here from a while back, and I distinctly pentox working really well for one guy, despite not being on other treatments. Of course, that could be a coincidence, but there are studies in rats and people that suggest pentox is a useful treatment.

I posed a question a while back pondering how the cocktail of oral treatments could impact exercise. I don't think there are any easy answers to this though. My hunch would be that if you're going to exercise at, say 10am, to take the treatments directly after exercise when your heart rate is recovering from exercise, rather than directly or an hour or so before.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on May 31, 2008, 12:59:11 PM
bodoo2u - what meds are you on? medications that suppress the immune system may be prescribed to treat inflammation. I can't see any reference to such drugs though in your posting history. Whatever the reason, it's good that you're getting it checked out.
Title: Low WBC count
Post by: bodoo2u on May 31, 2008, 03:31:09 PM
Newguy,

I'm not on any medications. About a month ago I began taking ALC, Mangosteen, Carnosine, Zinc, HGW, Circumin and B6. I was already taking Saw Palmetto. This is a first for me; all of my lab results have always fallen within the normal ranges. It's got me kind of worried. 
Title: Re: bodoo2u ...
Post by: George999 on May 31, 2008, 04:21:41 PM
bo, The thing that sticks out to me as far as your supplements go is the Zinc.  Zinc can have some strange effects on the immune system.  A little bit of it boosts the immune system.  Too much adversely effects the immune system.  I got a problem with nasty fungus in my mouth which really had me worried and it turned out to be from too much Zinc.  But, in my case, it did not affect my bloodwork.  But who knows?  Different people react differently.  The important thing is to track it down quickly.

One more thing.  The reality is SUPPLEMENTS = DRUGS.  They are just not controlled by prescription.  And one of the reason drugs are tested for years before being released is that they can cause significant problems for a very small percentage of the people taking them.  ALL KINDS OF VERY WEIRD PROBLEMS.  Just read the warning labels accompanying most drugs.  Line after line of remotely possible adverse effects.  So, really, any one of your supplements COULD be causing this.  I really wouldn't get too concerned until after you have had a complete checkout.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on May 31, 2008, 04:33:59 PM
bodoo2u - I can't for the life of me think that ALC etc would weapon the immune system. If anything it was been shown to boost it.

- Maybe there is an initial re-adjustment period when you start on such oral treatments?

- Maybe you are worried and/or under the weather and this has impacted the immune system?

However, as George say, I would consider laying off the zinc, as it does seem rather potent for some individuals and is maybe more appropriately taken during the duration of a cold for instance, rather than day in, day out.


If this is a knock on effect of the collagen that's a little worrying. I'm unaware of whether others have had their blood tested prior to, and after peyronies, so it's hard for me to comment. Anyone??
Title: Collagen, Zinc, etc, etc...
Post by: bodoo2u on May 31, 2008, 04:43:00 PM
George and Newguy,

Thanks for your responses. George, I will lay off the Zinc. I didn't knowit could have that kind of effect on the body. I was taking it because I have enlarged prostate and that is one of the supplements recommended for the condition.

Newguy; yes, I do have some worries, but I didn't think that stress could cause a reduction in my WBC count. I'll discuss this with my doctor.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on May 31, 2008, 09:56:06 PM
bodoo2u
Try Saw Palmetto for BPH. My prostate returned to normal range about 3 months after starting it.
Stay away from the discount brands. Go to a reputable store like GNC. That was the advice of my uro 10 years ago. Got off the prescription drugs and felt much better.
The only side effect I had after many years was delayed ejaculation when combined with the ED drugs V, C and L.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on June 01, 2008, 01:49:00 PM
Since we're on the subject of the immune system I thought I'd post a link I just found.

Immune block tackles Alzheimer's - http://news.bbc.co.uk/1/hi/health/7427541.stm

- The body's immune system could be harnessed to fight back against Alzheimer's disease, research suggests. Turning off a part of the immune system cleared away harmful brain deposits and improved memory, the mouse study found."

- Alzheimer's disease patients are gradually deprived of their memories and their ability to live normally. The damage is caused by the formation of "amyloid plaques" in their brain cells.

- They used genetic engineering to block an immune system response in mice, but only in cells outside the brain. Researchers had expected the change to worsen the Alzheimer's by sending the immune response into overdrive, causing too much inflammation inside the brain.  But they found up to 90% of the plaque material disappeared from the brains of the mice.

- Dr Susanne Sorenson, head of research at the Alzheimer's Society, said there was increasing research into inflammation in the brain and Alzheimer's. These inflammatory reactions could play an important role in the development of Alzheimer's, which may have previously been overlooked.

EDIT: Not to mention that aceytl-l-carnitine may be of benefit to sufferers (http://www3.interscience.wiley.com/journal/112597017/abstract?CRETRY=1&SRETRY=0)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: docholiday on June 12, 2008, 07:39:07 PM
Hi, Doc here, I talked to a few of you guys a month bank and you were a source of very good support, so I hoped maybe you can help me out again a bit.  I don't have peyronies, but here is what I do have.  Through blood work I have low test, scoring around 296, free is at 50, bioavailable is at 106 (low is 110 and 46 is low for the free) also I have a high white and red blood cell count.  3 ultrasouns last in april all of them negative showed nothing.  Symptoms, I'm not feeling any pain for the most part, feel nothing hard, no bend at all or anything, I have had sex twice, do get morning erections not all the time but not that rare, and can get it hard when i want and also spontaneously.  Problems it appears to be about 1/2 inch less in length, and when flaccid sometimes feels rubbery or lifeless and a cold head, or the skin is wrinkled and brown. 

I went to a great doctor at yale, head of the reproduction dept.  Did a semen sample he said I could be a donor and he did a sensitivity test and I passed so he says there is nothing wrong with the nerves anywhere.  His diagnosis is that my blood is too thick, it is like a reverse anemia, and that bad blood flow can cause loss of size not just scars.  Also this whole escapade has been going on for six months and if there was any damage there would be scars detectable by now especially in the ultrasound.  His idea is to treat the thick blood by lifestyle changes, drink more water, cut down on smoking cigs, take half a tylenol, and when the blood is thinner to start me on a testosterone treatment (i'm only 30) that would require a shot once a weak, it is not symthetic like testim, but something that makes my testicles produce more testo naturally to get my level up.

Questions are two folded, does this sound like a relaistic explanation to my problem and a way to resolve it.  Second question is it possible for there to be damage within the tissue they have not found.  Like can I have scars they have not detected.

I just want to rule out that there is any damage or scarring if anyone can think of any other tests, and if this is actually my problem and the solution for it.  I just don;t want to get my hopes up and start treatment for one this if it is not that problem.

Thanks ahead of time
doc.
Title: Re: Doc ...
Post by: George999 on June 12, 2008, 08:01:41 PM
Doc, My advice, for what its worth, is to clean up your diet and your lifestyle (smoking, exercise, etc.).  A lot of the mysterious maladies that we westerners seem prone to contract, are, in my most humble opinion, due to our rotten diets and lifestyles.  Underlying everything that goes on in your body are your metabolic processes.  If those get screwed up at the most basic level, the sky is the limit as to what kind of strange symptoms it can cause or what kind of strange diseases you can contract.  Wholesome food, sufficient exercise and a healthy lifestyle can go a long way toward resolving these things.  If you try to do it with drugs alone, you are fighting the wind.  What you are accomplishing with one hand will be more than undone with the other (like the one holding that cigarette, for example).  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on June 12, 2008, 10:48:39 PM
Doc
You are on Testim? The gels will make your blood thicker and not bring the testerone level up. Go to once a week shots.
Your may have the starting of Corporal Fibrosis. This will cause shortening like peronies. Have a color doppler to see it this is the problem.
At your age your T level should be in the upper range. If range is 250-1100 you should be at least 850 to 900.
Find out what is causing your blood to become too thick. This can cause erection problems as well as heart problems.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on June 12, 2008, 10:55:59 PM
Hi Doc,

I second what George said - easy for us to say, but quitting tobacco products is important to your overall health.

Testim may not be that bad - I think that the pros and cons of different therapies for a low testosterone are worth discussing in detail. For instance, what specific drug does he want to give you weekly?

Also, it would be one half of an aspirin (I am virtually certain), not a tylenol, that you would want to take to reduce clotting (called a "blood thinner" sometimes). You may have typed that accidentally, but if you came away really thinking 'tylenol', then you will be unable to make the next step which is to discuss the pros and cons of what he is proposing.

So, my overall advice is to do what you are doing, but a bit more rigorously (or "better" for lack of a better word). I would be happy to discuss with you what the implications of your plan are if I could understand it better.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: miller798 on June 13, 2008, 12:47:53 PM
New person here.  Past month, noted bump under skin, maybe some curving??  Saw Fam doc today, he recommended saw palmetto without examining me.  Should I have asked him to exam me?  Should I see a urologist?  Thanks.

miller 798
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on June 13, 2008, 02:24:31 PM
miller 798:

Don't walk, but run to a good qualified in Peyronies Disease urologist as soon as possible. The sooner you get started on some form of therapy for your condition (if it is Peyronies Disease) the better off you will be. Watchful waiting is not good enough for Peyronies Disease symptoms. Waiting can only lead to an advanced stage, if not treated, making it much harder to have any beneficial gains, etc. You need to know for sure that you have Peyronies Disease and then get started on some form of therapy/treatment ASAP.

If there is anything any of us can do to help, just let us know. Sorry to hear that you may this horrible mess.

Old Man
Title: Re: Saw Palmetto ...
Post by: George999 on June 13, 2008, 03:01:35 PM
Saw Palmetto is an herbal treatment for Prostate problems that works well for many people.  But it will do NOTHING for  a lump in or on the Penis no matter what is causing the lump.  I can't believe that a physician would recommend Saw Palmetto for a lump or curvature.  But he or she probably just associates Saw Palmetto incorrectly with being a general cure for any and all male uro-genital problems.  Then again, he or she may be using it as a placebo hoping the patient will just go away.

I second Old Man's opinion.  The most important thing to do right now is to get a diagnosis which you don't have yet.  Then you will have a foundation to proceed.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: miller798 on June 13, 2008, 04:18:17 PM
Sorry, actually, I was having some urinary flow problems, too, and he recommended saw palmetto for that.  He recommended Vit E for the penis.  Didn't examine either one.

Thanks for the advice.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: docholiday on June 13, 2008, 06:52:55 PM
Thanks guys, to answer a few questions I'm not on testim though I did try it for three days and there was some improvement, more morning wood, felt somewhat more normal flaccid.  Um I did have ultrasounds done three of them and they showed no signs of scarring and they were the color ones.  Yes I meant apsirin not tylenol.  Tim if you message or post which ever questions you have i'd be happy to answer.  I guess the plan is to thin the blood, try to do it naturally and once this take the shot once a week, not the testim. 

The crossroads I am at is wondering if this is all a blood flow, low test problem, or if there is any damage to the tissue inside the penis.  I mean I pass everytest they give me, but yet the texture of it is so different like rubber and this all started to happen after one day of masturbating with viagra that I did because a doc said i had peyronies in december (for those of you who remember my story) and that was when I started having these crazy symptoms.  Now I'm not sure if maybe since my blood is thick that the viagra may have done something, but I had no problems before the viagra incident.  I just want to believe I am on the right path, but it seems like everything happened after a certain incident that would lead me to think damage/injury as opposed to biochemical yet there are obvious biochemical problems. 

If anyone can think of any other tests besides physical examination, ultrasounds and sex to test for tissue damage or scarring.  I'm guessing there is none, but I'm so afraid of being disappointed and getting my hopes up.  And you read so many horror stories online of doctors not knowing what is worng with people.  I just dont want to start all this treatment if it is not going to help the problem, thanks.
Title: Re: Vitamin E ...
Post by: George999 on June 13, 2008, 08:57:55 PM
Vitamin E is a classic Peyronies treatment even though one can find no research to validate its use.  Personally, I do believe it to be helpful, BUT MINIMALLY so.  Its a start and no more.  Be sure to use something with at least 300mg of Gamma Tocopherol LISTED on the label.  Don't use the usual synthetic Alpha Tocopherol.  In my experience it IS useless.  But don't stop there.  See a urologist and get a diagnoses.  And if you do have Peyronies, treat it with determination and more than just Vitamin E or it is likely to get the best of you before you know what has happened.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: crank on June 14, 2008, 08:24:13 AM
Hi docholiday..

Some input..If you are going to have weekly injections of T-, I think you will find it more convenient to inject yourself rather than go to the Dr's office..I inject 200mg every two weeks..When my Dr. increased the injections, I had him give me the script for the serum,syringes,etc., and then I made an appt. with his nurse to train me...She went through the procedure in the office and I gave myself the first injection there after I got the supplies..that made me feel confident that I was doing it properly..I've been doing that for over 3 months and find it easy to do..takes about 10 minutes and is not painful, even though the needle is 23 gauge and 1"..it's intra-muscular and you inject into the quad of each leg alternately..It's cheaper too..My Dr. charges $35 to administer the injection..

crank
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on June 14, 2008, 08:45:58 AM
Doc,

You said that he wanted to give you weekly injections with something to make you produce more testosterone naturally. ANY form of testosterone given to you will suppress the natural production of testosterone (the "exogenous" testosterone signals to hypothalamus/pituitary that the testes are producing testosterone, and so the Pit production of LH (which regulates the test release) is turned off). OTOH, I do not know if there are any commercially available weekly injections that can stimulate testosterone production - if he has one, I would sure like to know what it is.

Injury to the corpora may lead to diffuse fibrosis (causing a rubbery sensation), and Pentox would be the best treatment for that.

A low testosterone can lead to diffuse fibrosis (though usually gradually) and testosterone would be a good treatment for that.

Good luck.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: docholiday on June 14, 2008, 12:52:11 PM
Tim, I dont have an actual name to give you of the prescription and yes he wants me to do it myself.  I guess the crossroads I'm at is if what I am feeling has to do with blood flow/testosterone or a form of fibrosis, so what I am unsure of is if color dopplars would show if there is any form of fibrosis and since they have shown nothing does that mean then this has to do with low test and/or blood flow, thanks.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Hitman on June 15, 2008, 03:32:37 PM
I use Jarrow's Toco-sorb from Iherb. I did hear that taking the tocos with seasame lignans can enhance their absorption.
Title: Re: Alpha Tocopherol ...
Post by: George999 on June 16, 2008, 10:43:35 AM
Jack, Alpha Tocopherol is believed to depress levels of the other Toco's.  For that reason, I use as little of it as possible.  On the other hand, Gamma Tocopherol is known to raise levels of Alpha Tocopherol in the body.  So by concentrating on the other Tocos (other than alpha tocopherol), one can raise the levels of ALL the tocos in the body.  This is the approach that I prefer.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jackisback on June 18, 2008, 02:27:36 AM
Thanks George. I had been taking the alpha since I figured I did pay for it, but I'll cut that out. Also, I'd like to add that the Primordial Performance stuff I mentioned is a powder. I like that too, because I have heard in any supplement powder is always absorbed better than a pill (although actually this powder is clunky, but it's not a problem for me since i put it in the blender).

Sorry if it sounds like I'm pushing a product. I actually don't know if it's any good compared to other brands, but I mention it because I didn't know where to find this stuff when i first started taking Vitamin E, and the company seems to have a good reputation online.
Title: New articles out
Post by: Tim468 on June 19, 2008, 02:34:10 PM
<1>
Full Text Link Available
UI 17651407
AU Piao S.  Ryu JK.  Shin HY.  Zhang L.  Song SU.  Han JY.  Park SH.
  Kim JM.  Kim IH.  Kim SJ.  Suh JK.
FA Piao, Shuguang.  Ryu, Ji-Kan.  Shin, Hwa-Yean.  Zhang, Luwei.
  Song, Sun U.  Han, Jee-Young.  Park, Seok Hee.  Kim, Joon Mee.  Kim,
  In-Hoo.  Kim, Seong-Jin.  Suh, Jun-Kyu.
IN Department of Urology, Inha University School of Medicine,
  Incheon, Korea.
TI Repeated intratunical injection of adenovirus expressing
  transforming growth factor-beta1 in a rat induces penile curvature
  with tunical fibrotic plaque: a useful model for the study of
  Peyronie's disease.
SO International Journal of Andrology.  31(3):346-53, 2008 Jun. AB This study was undertaken to establish a Peyronie's disease model
  with penile curvature by using recombinant transforming growth
  factor-beta1 (TGF-beta1) protein or adenovirus (ad-TGF-beta1).
  Four-month-old male Sprague-Dawley rats were divided into seven
  groups (n = 18 per group): G1 received a single injection of saline
  into the tunica albuginea (0.1 mL); G2, repeated injections of
  ad-LacZ (days 0, 3, and 6; 1 x 10(10) particles/0.1 mL
  respectively); G3, a single injection of recombinant TGF-beta1
  protein (700 ng/0.1 mL); G4, repeated injections of recombinant
  TGF-beta1 protein (days 0, 3 and 6; 700 ng/0.1 mL respectively); G5,
  a single injection of low-dose ad-TGF-beta1 (1 x 10(10)
  particles/0.1 mL); G 6, a single injection of high-dose ad-TGF-beta1
  (3 x 10(10) particles/0.1 mL); and G7, repeated injections of
  low-dose ad-TGF-beta1 (days 0, 3, and 6; 1 x 10(10) particles/0.1 mL
  respectively). Penile curvature was evaluated 30, 45 and 60 days
  after treatment, and the penis was then harvested for histological
  examination. Repeated injection of low-dose ad-TGF-beta1 not only
  induced fibrous scar in the tunica, which lasted up to 60 days after
  injection, but also resulted in significant penile curvature by
  artificial erection test 45 days after treatment. A peculiar
  histological finding in this group was trapping of inflammatory
  cells in the tunica, subsequent fibrosis, and formation of cartilage
  and calcification as well as loss of elastin fibres. This model
  involving repeated injection of ad-TGF-beta1 may contribute to
  further investigation of the pathogenesis of Peyronie's disease and
  the development of new therapeutics targeting this pathway. PT Journal Article.  Research Support, Non-U.S. Gov't.

<2>
Full Text Link Available
UI 18433786
AU Del Carlo M.  Cole AA.  Levine LA.
FA Del Carlo, Marcello.  Cole, Ada A.  Levine, Laurence A.
IN Department of Biochemistry, Rush University Medical Center,
  Chicago, Illinois 60612, USA.
TI Differential calcium independent regulation of matrix
  metalloproteinases and tissue inhibitors of matrix
  metalloproteinases by interleukin-1beta and transforming growth
  factor-beta in Peyronie's plaque fibroblasts.
SO Journal of Urology.  179(6):2447-55, 2008 Jun.
AB PURPOSE: Peyronie's disease is a fibrotic disorder of the tunica
  albuginea characterized by the localized formation of an inelastic
  plaque. We characterized matrix metalloproteinases and TIMPs (tissue
  inhibitors of matrix metalloproteinase) in Peyronie's disease
  tissue. MATERIALS AND METHODS: Matrix metalloproteinases and TIMPs
  were investigated in Peyronie's disease plaque tunica removed from
  patients with stable Peyronie's disease. Immunological methods were
  used to characterize the matrix metalloproteinases and TIMPs
  produced by cell cultures stimulated with transforming growth
  factor-beta or interleukin-1beta (PreproTech, Rocky Hill, New
  Jersey). Enzyme activity was quantified with a fluorescent substrate
  and correlated with mRNA levels using real-time polymerase chain
  reaction. RESULTS: Interleukin-1beta significantly induced (p <0.01)
  matrix metalloproteinase-1, 3, 10 and 13 protein production,
  endogenous matrix metalloproteinase-13 activity (12-fold) and matrix
  metalloproteinase-13 mRNA expression (11.2-fold) through a Ca(2+)
  independent mechanism in cultured fibroblasts. Transforming growth
  factor-beta stimulation failed to induce any detectable matrix
  metalloproteinase protein production or activity and conditioned
  culture medium even had the capacity to inhibit (p <0.01) the
  activity of purified recombinant human matrix metalloproteinase-13.
  Intact Peyronie's disease plaques were highly enriched with TIMP-1
  to 4 compared to donor matched perilesional tunica. CONCLUSIONS:
  These data show that, while interleukin-1beta strongly induces
  matrix metalloproteinase expression, transforming growth factor-beta
  strongly induces TIMP expression without any effect on matrix
  metalloproteinases and may represent an important downstream
  biochemical mechanism that leads to the progression of Peyronie's
  disease. The localized accumulation of TIMPs together with decreased
  matrix metalloproteinase activity in the Peyronie's disease lesion
  may be the biochemical consequence of the transforming growth
  factor-beta over expression that has been reported in many fibrotic
  disorders, including Peyronie's disease.
PT Journal Article.  Research Support, Non-U.S. Gov't.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: miller798 on June 19, 2008, 02:35:52 PM
Hello again - I scheduled myself with a urologist, which wasnot easy, since our health plan only has a few.  None of them listed peyronies as a specialty interest, and most of them seem focused on cancer.  When I called to schedule, I told them I had BPH and possible Peyronies Disease.  The receptionist, at least, said that this doctor could see me for those complaints, so we will see.  

Question - ED - I have no ED issues at this time.  Some reading says that rather than losing the whole erection, it just stays soft around or above the area of the scarring.  Is that correct?  

Is this partial ED, or even full ED, something that is likely to happen in the future?  I think that could be the end of my marriage.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on June 19, 2008, 05:16:02 PM
miller798
I have had Peronies and ED for almost 15 years. Yes Peonies led to more problems and ED progressively got worse to the point that normal erections are not possible.
Do Not Think Of This and An End. There are ways to help yourself. The most important now starting VED therapy. Go to the VED section and talk to Old Man and follow his advice. I did and it helps LOTS.
Forget the thought of loosing your marriage. This has only made my relationship with my wife of almost 40 years stronger. The one statement she made said it all. "Jack, I did not marry you for your penis." Wives a more supportive than we give the credit for.
Good Luck. You are in the right place for help all you have to do is let us know how.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Hitman on June 19, 2008, 06:27:21 PM
Miller get rid of that attitude >:(. you're already setting up yourself for failure before even starting.
Title: thanks
Post by: miller798 on June 19, 2008, 07:18:40 PM
Hey thanks, men.  But can you tell me what percentage of Peyronies Disease guys get ED?  Does Viagra help?

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on June 19, 2008, 10:07:44 PM
Quote from: miller798 on June 19, 2008, 07:18:40 PM
Hey thanks, men.  But can you tell me what percentage of Peyronies Disease guys get ED?  Does Viagra help?


Miller
In my case Viagra and the other drugs only helped a little while. I also have Venous Leakage and Corporal Fibrosis.
My best advice other than getting VED therapy is STAY AWAY FROM SHOTS FOR ED! They cause Corporal Fibrosis.
Jackp
Title: Re: Fibrosis ...
Post by: George999 on June 19, 2008, 10:19:32 PM
I think it is important to understand that Fibrosis is not a normal response to trauma.  A lot of people suffer trauma (including to their penises) and they DO NOT end up with Fibrosis.  Fibrosis occurs because the person incurring it has an underlying metabolic problem in the first place.  Once the Fibrosis starts, it tends to be progressive.  In other words, even if the underlying metabolic problem is resolved, the Fibrosis has already taken on a life of its own and remains difficult to control.  But to state categorically that trauma causes Fibrosis is not quite the whole picture.  But having said all of this, I would have to agree that ANYONE with Peyronies has already demonstrated a propensity for Fibrosis and SHOULD NOT be subjecting themselves to injections, either for Peyronies itself OR for ED.  I am also convinced that most of us spend far too much time trying to find a way to cure the Peyronies or ED and far to little time trying to understand and correct the underlying metabolic problem.  Just something for you all to chew on.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on June 20, 2008, 06:26:59 AM
George
My Corporal Fibrosis was caused mainly by the drugs in Trimix.
Venous Leakage will cause you to loose night time erections and loss of normal erection process will contribute to the Corporal Fibrosis.
This all started from Peronies in 1995.
If I seem to rant against penile injections, so be it. I believe that the drugs in the injection helped speed up the fibrosis and left me 100% impotent. They are also a major contributor to the failed implant surgery last October.
There is not a Urologist in the area I live of over a million people that has the qualifications to do the implant surgery I need. The closest to me is Vanderbilt. I was given the choice of Vanderbilt or Huston TX. Vanderbilt is only 3.5 hours and Huston is 10 hours. I also had a friend that had his penile problem fixed at Vanderbilt by the same Dr. I am going to.
IMHO Metabolic is not the only cause of fibrosis. Drugs and lack of physician knowledge are a major contributor.
Jackp
Title: Re: Metabolic Dysfunction ...
Post by: George999 on June 20, 2008, 10:05:57 AM
Quote from: jackp on June 20, 2008, 06:26:59 AMIMHO Metabolic is not the only cause of fibrosis. Drugs and lack of physician knowledge are a major contributor.
Jackp

Drugs -> Metabolic Dysfunction -> Fibrosis = Pretty simple equation  - George

PS - In my case, part of the mix included a beta blocker, Metoprolol.  Beta blockers are known to be associated with Peyronies.  Beta blockers are also known to have a significant effect on the body's metabolic processes.  Connective tissues such as the Tunica are highly dependent on adequate blood supply in order to stay healthy and avoid fibrosis.  This blood supply is tenuous in the first place and these tissues are among the first to suffer when metabolic processes go awry.  And multiple factors can conspire together to produce this affect.  Metabolic syndrome is a prime example.  Once this stage is set, the most minor physical trauma can trigger the Peyronies cascade.  On the other hand, a healthy tunica can be injected over and over without long term injury.  It is not so much as an array of possible causes, but more an array of possible triggers.  The underlying environment from which Peyronies and all other forms of fibrosis spring is metabolic.  (In some cases the metabolic dysfunction is a result of genetic issues).
Title: Urologist recommendations
Post by: LWillisjr on June 20, 2008, 02:35:02 PM
Many of us with Peyronie's are in violent agreement that there are many urologists who attempt to treat Peyronie's Disease, but they really don't have the background and knowledge that many of us are seeking for treatment. We all have stories to share regarding first visits to uro's who state "nothing can be done", or "you'll learn to live with it", or "want and see", or "maybe it will go away", etc., etc., etc.

I was wondering if it is possible for us as a group to develop of list of FAVORED urologists. I know there are not many in the entire United Stated who truly specialize in Peyronies Disease. But I think one of the areas we as a group can help new members with is helping them locate a reputable urologist. I don't want to get into uro bashing....  but I think it would seem reasonable to compile a list by location of those we as a group would recommend.

Instead of starting a separate thread, is there a way we can make recommendations and have the Dr.s and locations added to single FAQ of some sort.   ???
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on June 20, 2008, 04:46:38 PM
JackP:

Friend, keep on ranting against penile injections! There are a lot of us on this forum that have been there and done that with the pesky shots. I had 12 with new plaque and nodules with each and every one. Finally convinced my uro to give up and we started other therapy. So, don't let anyone deter you from betting against the shots!!!

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: crank on June 20, 2008, 05:22:29 PM
Old Man and JackP..

I'm with you on that...I don't intend to let anybody inject anything into my rod...even if it bends over double..

If the VED doesn't help, I will just retire that dude...

crank
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: MUSICMAN on June 20, 2008, 07:12:08 PM
As per the Uro recondition list I would have a blank
sheet of paper. I have seen one of the "best" and wasted
my time and money. (cash, I don't have the $2.00 co-pay )
I called and asked to talk to the doctor and I did. He said
he had options to try so I got a little hope. On my visit his
only option was surgery. I asked for Pentox, VET, or anything
but he said NO. I won't put his name on my post but he is
one of the recommended "BEST" in Los Angeles. They know
they can't help you but don't want to admit to it.   I do use
some oral supplements and VET  ( had to get my own equipment
as the "Best" would not give me a Rx for one. )  I do think the
VET is helping some but in the long run I don't think it can do
a lot with the deg. of bend that I have.  If in a year or two if
I could get the money for the surgery I would go for it with the
best knife doc I could find. As per a medical break-through, for
a pill that will dissolve scar tissue and replace it with normal
tissue I don't think I will live long enough to see the day.
                                      My List        Musicman
Title: Re: Depression ...
Post by: George999 on June 21, 2008, 10:06:13 AM
I really do think that depression and resignation can be the worst enemies.  With perseverance, there is a lot that can be done.  Peyronies is NOT irreversible no matter what the experts imply.  I have experienced ups and downs in my own case.  Right now its a big down.  After many months of complete control with ALC and other supps, I am no longer able to tolerate ALC and my supplement defense has been totally blown away.  I have requested a referral for access to Pentox and after nearly two weeks have heard nothing back from the Urologist.  My penis is on fire.  I should be in complete depression.  But I am too busy exploring new ways to deal with Peyronies to have any time for depression.  Right now I am experimenting with Mangosteen.  Over and over I have seen my Penis curve and then straighten, shorten and then lengthen, etc., so I KNOW that these things are NOT as irreversible as they are portrayed to be.  Additionally, I have seen plaques come and go.  Some respond that my symptoms must not be "real" symptoms, but something else.  Well, thats good news, because perhaps what many of the rest of you are experiencing are not "real" symptoms either and perhaps if you would not "accept" them as "permanent" changes they would go away as well.  In any case, the depression I am seeing on this forum often out paces the reality.  And I remain absolutely convinced that while fibrosis is extremely difficult to reverse, it is definitely NOT impossible to reverse.  But it doesn't happen overnight and it definitely doesn't happen for people who are immobilized by fear and depression.  AND, the reality is that there are plenty of doctors out there who are willing and able to help.  They are not easy to find or gain access to, but they ARE out there.  And the science surrounding Peyronies treatment just keeps getting better and better.  We are not seeing a lot of this yet on the patient level, but it is happening and it is coming soon.  In the mean time there are things like Pentox and the VED.  So don't do anything rash that you will later be sorry for just because you insist on wasting your time and energy on a pity party instead of taking whatever small steps might be available in terms of getting closer to a solution.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jackisback on June 21, 2008, 09:40:56 PM
Quick question: sounds basic, but I don't know the answer:

Does massaging the plaque do any good/harm?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on June 21, 2008, 11:19:21 PM
Jackisback:

Mild massaging might not hurt to do, but do not under any circumstances bruise the area in any manner. We have found that mild vacuum pressure does a better job than massaging. Some guys call the hand manipulation exercises jelqing. There are many sites on the web that advocate the use of jelqing. But, folks on this forum have reported very little if any success with its use.

So, if you do hand exercises, be careful and use caution, etc.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Warthog on June 24, 2008, 03:16:19 PM
I'm 99% sure I have Peyronies.  There is scar tissue and my penis bends to the left at around a 40 degree angle.  I would say it is more banana shaped though.  I'm not all too worried about it, but what I am worried about is if this will make sexual intercourse difficult.  I have no experience with such things and I wont for awhile.  I'm just trying to figure out if I should see a doctor in order to see if there is anything I can do about it if it is going to be problematic.  Can someone please tell me if this will be an issue in my future sex life?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on June 24, 2008, 06:10:15 PM
Warthog,  ...... welcome.
Peyronies's isn't that easy to diagnose. There is quite a bit of good information on this site. But don't confuse Peyronie's with a congenital condition. Congenital means you were born with it. And many men have a slight congenital curve. Peyronie's is the result of some trauma to the penis and can be from sex, sports injury, etc. And is usually defined with a sharper bend instead of a gradual curve. And there often can be pain associated with your erections. There are pictures indicating this on the Peyronie's Disease Society website. If you have always had the curve it is likely congenital. The best way is to discuss this with your doctor. If he/she is not sure, they will refer you to a urologist. Many urologists should be able to diagnose or confirm Peyronie's, but many of them don't know how to treat it.

As for whether this will impact your future sex life.....   Only you and your future partner will be able to answer that one. As long as you can achieve an erection and orgasm without pain, then certainly sex is possible. It is more of an issue of whether you yourself have pain associated with sex/orgasm, or if it is uncomfortable for your partner.

Hope this helps.
Title: Warthog
Post by: Angus on June 24, 2008, 06:19:14 PM

   Welcome to the forum Warthog. Intercourse with a 40-45 degree curve is usually no problem but some care must be taken in the form of certain positions and precautions, and many of these scenarios are documented on the forum and can be searched for. If you have full function and no other erection problems, you shouldn't have future sex life problems. But, can you please post again with some more information? You sound relatively young... what is your age? Have you had the curve all your life or is this a fairly recent development? You say there is scar tissue... how can you be sure if you've not seen a urologist? Did the curve appear after some kind of sexual activity? Please post with your age and other honest information as this will influence the information in replies you will get. My first thought is that unless you experience pain or other uncomfortable problems with intercourse, you'll probably be just fine, but more information will help others provide advice. Again... welcome!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Warthog on June 25, 2008, 01:06:32 AM
Thanks for the fast response guys...  I will try to answer my best to both of you.

I am 20 years old and this has been the case for as long as I can remember.  I have a feeling though that somewhere in my repressed memory there can be 2 possible reasons for this.  I had a step sister, at right around the start of puberty, thought it was really funny to jab me in that area.  Also, when I was younger, I masturbated with a hand warmer, and fell asleep with it in my pants, I woke up and it was really hot, there may have been some pain the few nights after words but honestly, I think I may have repressed that bit. 

The scar tissue is around the middle and it circles around the left and slowly goes away as it circles to the right.  I dont understand how something as much as a 40-45 degree angle can be considered a congenital curve.  It just seems too much.

I have not masturbated in over 5 years so I cannot tell you if there is any pain.  However, it does not appear as if there is any.  Jesus found me and since then, I have stopped most and if not all of my past sexual practices.  I however do have a girlfriend of 2 years, and we plan on getting married in another 2.  I just want to have enough time for treatment if it is deemed as needed.  I'm trying to avoid going to a urologist.

Not that I dont trust your info Angus but I would like to hear more from people concerning the effects on a sex life that a 45 degree curve will cause.

Thanks a bunches!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Warthog on June 25, 2008, 11:21:45 AM
Sorry for the double post but I have a bit more info.

There is also little bumps around my penis which get slightly bigger when I have an erection.  I know its not any form of STD as frankly, I've never done anything to contract one.  That was just a small concern.

But Angus, you mentioned that certain precautions and positions need to be taken.  I've searched the forum for these and I cant find any.  Could you possibly provide a link or maybe some just info yourself?  Thanks bro!
Title: Warthog; positions and curves
Post by: Angus on June 25, 2008, 02:16:41 PM

   I dealt with a 45 degree curve for years, and intercourse is possible and acceptable with this. Without becoming very graphic with imagery, I'll start by saying that unusual, gymnastic-like positions should be avoided. "Traditional" positions such as the missionary, rear entry and other less contortioned positions will work. Peni and vaginas can adapt to the situation amazingly well. One of the primary things that must happen is communication between the partners. Talk, discuss and ask questions to always be aware if the other is comfortable, feeling pressure or pain, and generally share how the experience is going. I can't stress enough how important communication is; when the time comes, talk to one another and constantly be aware of how the other is feeling during sex. Determine what feels good, what does not, what is comfortable and what is not, then both of you learn from this and know what things to avoid and what things are ok to do. One thing that you will want to avoid at all costs is long strokes and the penis withdrawing completely; during the heat of the moment this causes the penis to be jammed outside the vagina and believe me you want to not go there and stay focused to keep this from ever happening. It causes pain and bends the penis which may or may not  cause more  damage. Just remember that sex is a gift and that talking about it between partners is NOT a taboo, and you're not breaking any rules. Base your relationship on communication and keep those lines open, and more than likely you two will be fine. Slow and easy is the word.
   I still think that you should at least consider getting an evaluation by a urologist, considering your concern with the issue. Is the curve is congenital or not... a talk with a uro about your condition and past experiences may shed some light on whether there is scar tissue or not. You need this information from a professional (in my opinion) so you can decide what direction, if any, you'd like to go with treatment. Don't let your concern with this turn into panic and obsession; at this point you are young and functional, and when the time comes for sex you two will need to take it slow and easy and communicate.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Warthog on June 25, 2008, 09:00:06 PM
Thanks Angus!  That actually helps a lot.  I'm still interested in more info or confirmation of already said info to anyone else reading this.

Honestly, my family is slightly tight on the money area.  But hey, arent we all?  So I guess my next question is if anyone knows if Blue Cross/Blue Shield cover just a regular visit to a urologist for a small  fee/deductible?  If not, I would feel much better about going to one.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on June 25, 2008, 10:05:47 PM
Warthog (I always wonder about name choices here...)

You are young, so I think I get your questions. A few of them are really about asking others to tell you what to do (i.e. does Highmark cover urology consultations)(answer is almost certainly yes...).

My advice is more generic. We can help you understand this problem, but you are going to have to take ownership of figuring out what to do. If you don't know what your plan covers, then you call the insurance company and ask them what the plan covers - no one here knows the answer, that much is certain.

So, briefly - there is no reason not to ask for help and to go after it aggressively. And you similarly might want to speak to a pastor about masturbation; most modern and enlightened denominations do not condemn it as a sin and view it as normal. Learning about your own body will help you to take care of it, and help you to be as good a lover as possible for your partner when the time comes to consummate the relationship.

Good luck!

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on June 25, 2008, 10:19:41 PM
Warthog,
Is your scarring visible? What I mean is can you see it on the surface of your skin? As Peyronies scarring is under the outer layer of skin and is actually on the tunica. So for a Peyronies scar you have to "feel" for it under the outer layer of skin and on the tunica.

I support Angus and Tim's recommendation on checking with your medical coverage and getting to a urologist to make sure you don't have some other condition. Believe me there are other conditions besides Peyronies Disease.

As for my experience, you can read my history in the "Meet the members" posting. I have a 60 degree acute upward bend. I'm fully functional, can achieve erections, and climax. This makes certain positions for my wife a little uncomfortable. Since the vagina tips slightly up when facing your partner, then the missionary position is most accommodating to her for my curvature. We use to enjoy rear entry (not anal entry, just vaginal entry from behind) but this is the most uncomfortable for her now since in this position my curve and hers are basically opposing each other.

BTW....   as a fellow believer, I applaud your abstinence until you are married. If you can wait, it will be special for both of you. I feel blessed as my wife and I have been married for 32 years.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Warthog on June 26, 2008, 01:39:01 AM
Tim-  Warthog is my name on all the forums I've been on (mostly not medical)...  Which is around 5 now I think.  I hope I dont come across as rude but I dont need to talk to my pastor to know that masturbation is wrong.  The only thing I need to know for that is the Bible.  Jesus himself said that whoever looks at a woman lustfully has already comitted adultery with her in his heart.  I don't know about you guys, but before I needed to think and look in my mind at a woman lustfully in order to masturbate.  Thank you though for your input, I've been praying for an opportunity to suggest to my dad that I go for a consultation as I already have a referal from my physician. 

Willis- My scarring is visible but I cannot feel anything.  No lumps or anything of the sort.  Just some browned skin.  As I'm not sure what this all is it is starting to seem like a better and better idea to go in for a consultation.  Thank you for the spiritual support!  I really dont think I'll have a problem waiting 2 more years, it is just all the other impure stuff that can come before it.

It seems like the rough consensus on google is that a curved penis is actually better for the ladies during sex.  That true or just a bunch of mumbo jumbo?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on June 26, 2008, 12:40:44 PM
Dear Schwing(!)

Please stop spamming our board.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: hornman on June 26, 2008, 12:59:42 PM
I was just wondering if anyone is aware of any other disease or condition that mimics the symptoms of peyronies.  I was diagnosed with this condition after I told my urologist that I suspected I had it.  Prior to that he was treating me for prostatitus which I do not think I ever had.  I was complaining about penile pain.  I've got the hour glass shape along with palpable plaque.  My urologist barely examined me!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: MUSICMAN on June 26, 2008, 03:33:52 PM
We are fortunate that Uro's went into the med.
profession as I would not want one for repairing
the brakes on my car!
                                        Musicman
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: crank on June 26, 2008, 04:27:48 PM
Musicman..

I agree with you...A URO cost me my left nut..literally, now my Dr. says the "altered blood supply" caused the Peyronies Disease..He may not know what he's talking about either..

crank
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on June 26, 2008, 05:04:44 PM
Warthog,
IMHO the stuff about "a curved penis is best" is all mumbo jumbo. It's all about being in-tune with each other's needs and understanding what beings pleasure to each other. Before my Peyronie's the sex was great.....   actually, even now the sex is great. As I said before we are just more limited now to more comfortable positions. Before the Peyronies we would have tried any position and been comfortable. So I guess I'm thinking a straighter penis is better from my perspective.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Waiter on June 26, 2008, 07:49:30 PM
Hello there, I am new and would like to seek your opinions on my condition (if I have one). I have already booked an appointment with uro but I have to wait for a long time to see him.
In the last 2 months I have noticed a curve on my penis. The curve is to the left and is no more than 20 degrees. I know that all penises are different and that some of them are curvy but I have never noticed it before. The curve does not seem to get worse nor better so far. I do not have any pain or discomfort in my penis. I cannot feel the plaque but I do have that curve. I am also fairly young (22 years of age) and healthy. Furthermore, I still have that curve when my penis is flacid.
Am I being paranoid and should I just forget about it or could I possible have peyrone's? It could have been possible that my penis have been bruised since I regularly play rugby.
The fact that there are not proper information about the illness is also frustrating. Would be very glad to hear from anyone who could give me advice.

Adam
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Warthog on June 27, 2008, 01:36:05 AM
Adam, you seem to be in a very similar situation that I am in.  I am 20 years old but instead of only a 20 degree bend its much closer to 40-45 degree bend.  The tell tale sign to peyronies is that you have a palpable plaque that you can actually feel on your penis.  If you do not have this, you do not have peyronies.  Considering your bend is only 20 degrees I would consider that relatively normal with no problems.  However, if this did just show up, I still would consider getting to that urologist.  I'm pretty new here, so I hope some of the older guys can give you some more knowledgeable advice.  Welcome!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Waiter on June 27, 2008, 03:42:26 PM
Thank you for your reply Warthog.
I have tried looking at my curve again and noticed that my penis (actually the head of the penis) bends towards the left at around 10-15 degrees, not 20 as I have stated so I am starting to think that I am just being paranoid and that I have always had this slight bend but just haven't noticed it. I cannot feel any plaques or any pain at all. Do you think that it is something that I should just forget about since the curve has not been getting any worse? Does the curve only exist in this condition when the penis is erect?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: crank on June 27, 2008, 05:00:54 PM
Waiter...

After 30 years in the gym and the men's locker room, I would offer the following:

Many, many men do not have a perfectly straight penis..they hang right and left, they curve, and the glans (head) can be twisty to the right or left..they can be both curvy and twisty...

If I saw you in the shower with the condition you describe, I would not notice anything unusual, nor would anyone else that happened to be there..

Until something more dramatic develops, I think you should forget about it..

crank
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: zone611 on June 27, 2008, 06:05:31 PM
I have Peyronies and I am able to still have sex with my Girlfriend, what I was wondering since my penis is bent (down) would that prevent her from getting pregnant?

We have talked about this and I am in the process of getting a fertility test which I suspect will be normal.  She thinks that because it is bent (down) and is not totally erect that the possibility of getting pregnant is reduced.

I did talk to my doctor about this and he explained that as long as there is penetration she can still get pregnant. basically having Peyronies does not change the outcome or reduce the changes of getting her pregnant. I am able to archive a full erection (bent) and Penetrate her with no problem. Some positions are more problems then others. (can anyone offer any suggestions)?

I hope someone can help me here because I very much want to have kids and I have heard conflicting ideas on the subject. I have had Peyronies for about 10 years and only recently have decided to investigate it further.

Please Help

Zone611
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: FreshKid on June 27, 2008, 06:46:54 PM
Hello guys :)

Newbie here, with a question.
I'm 21 years old and i just recently started having problems down there.
I feel a slight numbing pain when erect and there is a slight curve to the left and upward. Actually, there is a curvature in a flaccid state also (to the left side only), which i didnt have previously. In addition, it takes me more time than before to achieve strong erection.

The thing is, i'm 90% sure that my case is strictly a result of past injuries (i can remember quite a few cases of unfortunate moments), with no specific genetic factors involved whatsoever.

With that in mind (something is telling me that this is very important), can somebody please advise me what kind of approach should i take at this early stage. I'd definately need some advice as i'm still pretty much freaked out by the whole thing.

Thanks!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on June 28, 2008, 10:49:32 AM
Dear FreshKid,

Read the "Child Boards" here for general advice about what to do.

Go to a good urologist and get a diagnosis to rule out anything else.

Read up on the VED, on medications including Pentox, vitamin E, supplements and other therapies.

I would start with a VED and work on maintaining your length and girth right now.

Tim
Title: I have Peyronies Disease-- 21 years old
Post by: I_H8_PD on June 30, 2008, 12:20:49 PM
Hi,

I am 21 years of age and i feel that i definately have the disease (for about 3-4 years kept getting progressively worse- although i always have had a slight curve downwards). From some online research i have the rare case where the penis is curved downwards (and severly) and i havent the slightest clue how i contracted it at this age!!!

Is the curved down case generally easier to treat?

What options do i look at now? What is happening with that Xiaflex (from auxillium)?

Is their a cure overlooking the short term? What would you recommend i do now?

My penis is as mentioned before bent, downwards and looks like this except it is curved down, not up:

http://www.andrologyaustralia.org/docs/PeyroniesDisease.jpg

i hate talking to girls now just incase they ask the question, any advice, i currently live in sydney.


Cheers
John
Sydney, Australia

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on June 30, 2008, 05:26:58 PM
Dear I hate Peyronies Disease,

See a pediatric urologist and explain that you have a congenital curvature that is getting worse as you mature. It sounds like you have uneven growth and need to get that looked at.

Tim
Title: Do Stretched Length and Erect Length Necessarily Correlate?
Post by: jsotheby on July 02, 2008, 12:58:01 AM
I just wondered if stretched length necessarily equals erect length?  I believe due to a cavernography (like 6 needles inserted) I have lost an additional 2 cm of length.  All together I believe I have lost 3 cm since I was stricken with some mysterious penis-shortening, ED-causing ailment that I have been told several times is not Peyronies Disease or even fibrosis.

Anyhow, I have read I can't expect erect length to be longer than stretched length.  i have noticed a correlation b/w the two, but was hoping that with proper blood flow, my erection might actually be a little longer than what I get stretched.  Is that possible?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jakesnake on July 02, 2008, 06:20:37 AM
I have had Peyronies Disease for about 18 months now. I have a question that may sound strange and if it is then please disregard what I'm about to ask, thanks. I have no problems getting an early morning erection,I curve upward and to the right at about 30 degrees. When I have this erection it feels as if it was the way I felt before the onset of Peyronies Disease.  I want to know if any of you men here have the same sensation that I'm feeling or am I wanting my penis to feel this way(imagination)?

I am 57 years old and I use to have a nice sized penis about 7 inches erect. Now it's 4 inches erect. Call me dejected and I live in a small town where my urologist tells me to take Vitamin E. Thanks for any help.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on July 02, 2008, 07:16:18 AM
After about 18 months after my Peronies started (1995) when the curve started to straighten I lost 1.25 inches in length and some girth.
The way a urologist explained it to me is when the curve straightens your length is that of the side of the curve (short side.)
Go to the VED section and talk to Old Man. He has a 26 week protocol that will help. I started it last October and gained back almost 1/2 inch.
The daily VED exercise will help the blood flow to the penis. My Peronies lead to Venous Leakage and then Corporal Fibrosis.
I don't know what part of the country you live in but good doctors for Peronies and its side effects are hard to find. I live in an area of over a million with a Medical School and will have to travel 3.5 hours to Vanderbilt to get a doctor that can help.
Good Luck, Welcome to this board it will help. A lot of guys here in the same boat.
Jackp
Title: Re: Do Stretched Length and Erect Length Necessarily Correlate?
Post by: jackp on July 02, 2008, 07:27:03 AM
I started using Old Man's VED routine after failed implant surgery last October. Since that time I have gained back almost 1/2 inch of length lost to Peronies.
The gain was slow and over a period of about 9 months.
Like you I lost about 3 cm (1.25 inches). The VED is the only thing that helped. Now my stretched length and erect length are almost the same.
Jackp
Title: Re: Do Stretched Length and Erect Length Necessarily Correlate?
Post by: Tim468 on July 02, 2008, 12:17:08 PM
I posted on this before - here is the link:

https://www.peyroniesforum.net/index.php/topic,25.msg12561.html#msg12561

It is important to note that the figures show a correlation between stretched and erect length, but it is not uniform for everyone. BUT, if you are stretched to say 5 inches and erect to 5 1/2 inches (or vice versa), then presumably if you increased one half inch with traction, it would be seen by either method of montoring.

I think it is important to note what length and degree of curvature that you are to document improvement. I just read an abstract of men who have had injections for premature ejaculation into the head of their penis, and who have a loss of circumference. What was very interesting is that the men underestimated the degree of loss of size consistently. So what we think we are seeing is demonstrably not always correct.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on July 02, 2008, 04:16:31 PM
jakesnake,
Interesting observation, hadn't thought about it. I have no pain with my Peyronies Disease (fortunately). So when I have an erection, yes it "feels" hard just like always. Is that what you are referring too? Of course when I look or touch it, I am reminded of it's current shape.

You seem to have lost considerable length. Assuming that when you were 7" flacid you were at least 7" when erect. And now you are 4" erect? Have you experienced any hourglass or other deformity with your Peyronies Disease?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jakesnake on July 02, 2008, 07:57:14 PM
Yes, I'm talking about the "feeling" I have when erect. I do have an hourglass shape near the base.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: gwar on July 02, 2008, 11:08:09 PM
I must admit that finding out by hitting the internet today why my penis is going L and getting an hour glass is a bit of a bummer
I had no idea???
Im taking Propecia
Any comments
I guess a VED is next?
GWjavascript:void(0);
Title: Newly Diagnosed
Post by: isitgone on July 03, 2008, 10:47:27 PM
I am 61 years old and had a radical prostatectomy in December of 07. It was supposed to be nerve sparing but I failed in getting a stuffable erection using Viagara, Levitra, Cialis, several forms of injection, finally ending with Trimix. By then I had Peronies suddenly show up. Went from 6" erect to 4" with an upward curve.

I discovered this forum and have just received my three tube VED from Augusta Medical. I plan on using the 26 week protocol starting Independence Day! I saw a note that said not to use the VED for sex right off. Why is that?  I would love to have a non-drug induced erection for a change. Help me with this.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on July 03, 2008, 11:38:18 PM
isitgone:

From my experience in working with quite a number of guys using the VED, I have found that using the VED for an erection so soon after starting to use it can and will cause some further damage. To explain: since your penis has not been fully engorged with blood for maybe a very long time, the added pressure from the VED can "overwork" the erectile tissue.

My recommendation based on my long experience with VED usage is to start off very slowly with only a mild amount of pressure. DO NOT USE THE RETENTION RINGS WHILE DOING Peyronies Disease EXERCISES. Use the retention rings only to hold up your erection when going for a sexual encounter. Practice with the VED under very mild pumping for several days to "acclimate" your penis to the added pressure. When you can pump to a fairly good erection without feeling any pain or discomfort, you can start off with a low tension ring and work up to higher tension, if needed, to maintain an erection long enough for sex.

Use only the medium or large cylinder with the three cylinder model VED since the small cylinder will confine the penis too much. Use the best cylinder that will let your penis expand to its fullest when going for an erection for sex. You may need to practice with the two larger cylinders to determine which one works best for erections.

Again, practice with the VED, try different tension rings to determine which one is the best without causing any pain or discomfort when having sex. Use good judgement and you should have no problem.

Above all, use extreme caution to never overpump the vacuum pressure and use plenty lubricant on your shaft as well as up into the cylinder(s). Let me know if you have further questions.

Old Man
Title: Thanks - Another question
Post by: isitgone on July 04, 2008, 12:15:58 AM
I also had a very light stroke about 10 weeks ago and have since been on Plavix 10 mg per day. I read a caution for those on blood thinners and want to know the caution needed for use of the VED.

I really appreciate all the knowledge I have gained from here in such a short time. My Uro seemed to be clueless and mentioned surgery in his first breath after I told him I had developed Peyronies Disease.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on July 04, 2008, 06:31:04 AM
I was on Plavix just after my stents and was using the VED all wrong and caused a bad blister. The key is not to pump and just keep the pressure for a long time. Start slowly with just enough pressure to get a good seal. Pump and hold for 15-20 seconds and then release. Repeat for several minutes but do not pump to the point of pain or any discomfort.
Read old man's post on proper use of the VED. It will work.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on July 04, 2008, 08:54:41 AM
isitgone:

Yes, you will do well to heed Jackp's caution about overpumping the pressure. Taking any blood thinners presents a different approach to VED therapy. Since the blood is thinned down somewhat and flows faster than when not using thinners, caution should be exercised in pumping vacuum. Many side effects can and will occur with the higher pressures.

As Jackp says, work slowly and methodically with the protocol whether you are using the one cylinder models or the three cylinder models. The small cylinder of any VED model requires more caution since the penis will be confined more and will have a greater pressure on the penile shaft overall. So, work with moderate pressures, watch for any symptom of edema, redness, any pain or discomfort and if they occur, wait until these have healed before resuming the therapy with less pressure.

The above was learned from experience first hand with my VED usage over a period of many years. So, keep a regular schedule of exercises and if you are following the 26 week protocol, don't skip any days. If for any reason you miss a week or more of the protocol, start over with week one again.

Best to you, Old Man
Title: Thanks Again Guys..Another Question
Post by: isitgone on July 04, 2008, 11:38:30 AM
Those Select Tension rings with the Vitality OTC look small and do not have a lot of stretch. Are they supposed to be many diameters smaller than the penis to hold the blood?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on July 04, 2008, 04:08:08 PM
isitgone:

Yes, the tension rings are designed to be smaller than the penile shaft. If they were not smaller, they would do not good. They have to be tight enough to hold the blood that is pulled into the corporal chambers in order for the erection to be firmed up and held long enough to complete the sex act.

However, when using the tension rings one must be extremely careful not to use one that is actually too small which can and will result in further damage to the penis.

Extreme caution should be exercised at all times whether one is going for ED therapy or Peyronies Disease therapy. Remember that too high a pressure usually results in some form of damage.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: thunder on July 05, 2008, 06:28:48 PM
I just descovered last night I have the symptoms of this disease. I had noticed pain but was shocked when I saw an obvious bend. Looked it up on the internet and discovered what I now believe I have is Peyronie's Disease. Should I stop having sex and/or jacking off for awhile??? Been reading posts and will look for a good Dr, I live in Cleveland Ohio. Any advice is apreciated!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on July 07, 2008, 02:32:53 AM
old man - should I be wasting my time on Larginine if i am taking ALC + Pentox - or should I be taking LA + pentox and dump the ACL or do I take all 3 together - am i duplicating the supplements and wasting money and effort - i feel i am doing as much as I can with the ved on top of this - is there anything else i should be taking that will help??
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on July 07, 2008, 11:10:41 AM
Iceman:

Have no clue about the supplements. You should be asking George999 about these as I consider him to the the "guru" in that department. He has a vast knowledge of supplements and should be able to put you on the right road with them.

Old Man
Title: Strenuous exercise and Peyronies
Post by: bodoo2u on July 07, 2008, 03:52:09 PM
Have any of you ever experienced a strange feeling in the area of your Peyronies Disease during strenuous exercise. Once, when I was doing leg extensions on a weight machine, It felt like electricity or tingling in my penis in the area of the plaque/scar tissue. The other day, when I helped someone move an entire household of furniture, I felt pressure in my penis. And no, I didn't strain myself too much; it just felt like some of the pressure was in my penis.

Is there a possibility that heavy lifting can have an adverse effect on Peyronies Disease? I sure hope not.

Bodoo
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: miller798 on July 07, 2008, 04:52:23 PM
Ok, gentlemen,

Went to local urologist (at major medical center), seen by resident and attending physician, who both felt my plaque, and said that if I was not having pain, difficulty with intercourse, or ED, then I should watch and wait.  I have practically no curvature at this time, but I do have an indentation when erect.  Suggested next steps?  Try some Vit E on my own??

miller798
Title: Miller798
Post by: Angus on July 08, 2008, 12:09:12 AM

   You have recieved an unfortunately classic reply and recommendation. Many such recommendations from urologists are documented here on the forum by many men. You must choose what steps to take, if any, on your own. The steps to choose from are also documented on the forum. You must decide which direction you would like to take if you should choose to act on therapy. Vitamin E can do no harm... but you should read the supplements thread on the varied types of vitamin E and dosages. If you want to move forward with any of the therapies discussed in the forum, decide what you are comfortable with, choose the thread where your choice is discussed, read as much of the thread as possible, then post questions you may have.
   Watching, waiting and vitamin E is often the first thing recommended by a urologist; from there they sometimes move along to recommending surgery to those they feel this would work for. Since you are not in that category, watching and waiting, along with vitamin E, is the only other thing in the urologists choice of treatments more often than not. The therapies discussed and used in the forum certainly cause no harm when used with care, and one or more therapies may provide relief. If you decide to move forward, chime in with your thoughts.
Title: Re: Iceman ...
Post by: George999 on July 08, 2008, 10:51:13 AM
Iceman,  My apologies for taking so long to answer your post.  Not so long ago, I would have advised you to continue with the other supplements.  But now I have some real concerns about ALC.  As you may or may not know, a few weeks ago I got really wacked with a reaction to it and I still am not sure what the longterm consequences of that reaction will be.  That experience has made me much more cautious about recommending ALC.  I got some really excruciating flu-like pain symptoms that I finally, after weeks, traced to the ALC.  I have not been able to find any reference on the web to such a risk from taking ALC.  In my case I was taking 1.5g per day.  I would advise anyone taking ALC to not go over 500mg per day on the dosage.  I would also advise anyone able to use Pentox instead of ALC to do so.  I am currently using high dosage Mangosteen extract while I await an appointment with Dr. Lue.  But high dosage Mangosteen extract may also have some degree of longterm toxicity and at this point I will feel much more comfortable with Pentox, in which case I will greatly reduce my intake of Mangosteen.  So my advice would definitely be to dump the ALC.  The L-Arg should probably be judged on its own merits.  If you can get along without it, so much the better.  But if stopping it makes things worse, probably better to continue.  In my case, I have stopped the VasoFlow at this point simply because my libido is in top shape and the VasoFlow no longer seems necessary.  In fact, I had already stopped the VasoFlow when I got the ALC reaction.  Another thing that I have to say bothers me about ALC is the fact that I have NEVER seen its pharmacology clearly explained.  It is kind of a mysterious substance in that regard.  It DOES work and it works very well, or it least it did for me.  But no one seems to know quite how it works.  We know, for example, that it is NOT an anti-inflammatory.  Drugs that are not clearly understood really bother me in terms of their potential safety aspects.  When you don't know how something is achieving what it is achieving, that is a red flag because you really don't know what price you might be paying for what you are getting.  - George


Quote from: Iceman on July 07, 2008, 02:32:53 AM
old man - should I be wasting my time on Larginine if i am taking ALC + Pentox - or should I be taking LA + pentox and dump the ACL or do I take all 3 together - am i duplicating the supplements and wasting money and effort - i feel i am doing as much as I can with the ved on top of this - is there anything else i should be taking that will help??
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jayhawk on July 08, 2008, 01:43:18 PM
George999,
I had the same reaction you had with ALC, I quit taking it about 8 weeks ago and the symptoms went away. Pentox appears to be the most effective treatment for me. Supplements have not seem to be very effective. I have read that Mangosteen kills fruit flys, this is not a good sign for consumption if you ask me!
Jayhawk
   
Title: Re: Jayhawk ...
Post by: George999 on July 08, 2008, 02:18:01 PM
Thanks so much for sharing that.  I think it is extremely important that we document these kinds of things for the benefit of those coming behind us.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Hitman on July 08, 2008, 04:02:03 PM
well I've had a positive result from ALC/ALA combo regarding my pain so I plan to continue taking it until otherwise. It should be ideally taken with ALA to quench the free radicals.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: George999 on July 08, 2008, 06:52:58 PM
Just for the record, I was taking ALA (and a number of other anti-oxidants) along with ALC when I encountered the problem.  Hopefully, it will not affect you.  But IF you have flu like leg pain or any other type of flu like pain sensation, suspect the ALC.  As I said before, it DOES work, and for many of us that can't obtain Pentox, there simply aren't that many choices right now.  My big concern about ALC is that the Acetyl component is related to Acetic Acid and my understanding is that metabolic processes actually dump Acetic Acid in the bloodstream when we are taking ALC.  This must then be cleared by the kidneys.  That is why ALC tends to produce a distinctive oder in the urine.  The problem here is that if the kidneys fall behind in clearing the acetic acid, one can experience a toxic accumulation or buildup in the bloodstream.  This could be really hard on our internal organs.  The kidneys and liver might be quite vulnerable to damage from such a buildup, so I would advise caution.  This is only my understanding of how ALC gets metabolized, it may or may not be correct.  If ANYONE here knows any more about this issue, please by all means share that information.  I would be delighted to be corrected on this if I am wrong.  - George
Title: ALC
Post by: bodoo2u on July 08, 2008, 10:13:57 PM
You all are scaring the HECK out of me with all the negative talk about ALC.  I take 1000mg every other day, along with Pentox, which I have been taking sine June 19. I might stop taking the ALC until more people on the forum can post comments on how it works.

I asked earlier and no one answered, so I'll ask again. Can anyone tell me how long it takes before Pentox changes the shape of the blood cells? I really want to know. Also, if I have an job interview and do not want the lab to detect it in my system, how many days do I have to abstain so that it will not appear in my urine sample. I wouldn't want the lab folks to tell the employer, because the employer might think I have a serious medical problem.

Am I overly cautious or what? LOL
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on July 09, 2008, 02:06:31 AM
George999 - im having NO issues with ALC - I find the ALC + Arginine + Pentox a good combo... - anything to take the pain away...

also I am seeing my uro next monday - should i ask him to prescribe me Pirfenidone????? - ive read on this forum that it may help - hes a cool uro and is open to ideas..please let me know.

thx
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: George999 on July 09, 2008, 11:40:03 AM
Quote from: bodoo2u on July 08, 2008, 10:13:57 PMYou all are scaring the HECK out of me with all the negative talk about ALC.  I take 1000mg every other day, along with Pentox, which I have been taking sine June 19. I might stop taking the ALC until more people on the forum can post comments on how it works.

All we are suggesting here is to KNOW that ALC can cause problems and to be cautious.  Caution might mean to be alert for any flu like symptoms, to be alert to any burning sensation that follows arteries or veins, or to get occasional blood and/or urine tests done to make sure that nothing is amiss.  In any case, just KNOW that like many medications, this supplement CAN cause serious side effects.

Quote from: bodoo2u on July 08, 2008, 10:13:57 PMI asked earlier and no one answered, so I'll ask again. Can anyone tell me how long it takes before Pentox changes the shape of the blood cells? I really want to know. Also, if I have an job interview and do not want the lab to detect it in my system, how many days do I have to abstain so that it will not appear in my urine sample. I wouldn't want the lab folks to tell the employer, because the employer might think I have a serious medical problem.

Pentox should cause beneficial changes in blood cell shape right away.  But the beneficial effects of those changes might not be apparent right away because it takes time for tissue to heal even when the environment that promotes healing is restored.  As for the job interview, employers usually are looking for illicit drugs, not things like Pentox.  I don't think you need to worry about this, but that is only my opinion.

Quote from: bodoo2u on July 08, 2008, 10:13:57 PMAm I overly cautious or what? LOL

When it comes to ALC, I think you need to be cautious.  As far as Pentox showing up in an employment screening, I think  you are being overly cautious.  Two thirds of the population is on some sort of prescription drug(s).  Employers EXPECT this.  Its a fact of life.  - George

Quote from: Iceman on July 09, 2008, 02:06:31 AMGeorge999 - im having NO issues with ALC - I find the ALC + Arginine + Pentox a good combo... - anything to take the pain away...

As above, just be alert to possible problems.


Quote from: Iceman on July 09, 2008, 02:06:31 AMalso I am seeing my uro next monday - should i ask him to prescribe me Pirfenidone????? - ive read on this forum that it may help - hes a cool uro and is open to ideas..please let me know.

I don't care how cool your uro is, he is not going to prescribe Perfinidone for you.  Perfinidone is still in Phase III testing.  It is not approved to treat anything at this point, which means even the pharmacies don't have it, which means a prescription would be useless.  People who are getting Perfinidone at this point are obtaining it directly from the manufacturer which basically requires a dispensation from God.  And I guarantee you, you won't get one.  But it is indeed looking very good and should be approved within the next few years for IPF, which means that the pharmacies will begin to stock and theoretically, if your uro was cool enough and daring enough, he could prescribe it to you off-label.  The next challenge would be figuring out how to pay for it since it will probably sell for $250 per pill.  ;)  - George

thx
[/quote]
Title: Re: ALC
Post by: Hawk on July 09, 2008, 12:00:18 PM
Guys,

I remind all to CHANGE THE SUBJECT OF YOUR POSTS TO REFLECT WHAT YOU ARE POSTING ABOUT It would help an over worked administrator and all who read this forum.

About ALC.  I have taken 3000 mg a day for long periods with zero side effects.  I find nothing indicating the connection to the symptoms George or Jayhawk report.  Does that prove it has no side effects?  The answer is clearly "NO", but as George pointed out, neither does isolated anecdotal reports of 2 people who think the ALC caused the symptoms they experienced.  ALC is used with positive results for several health conditions.  None of my extensive reading from objective sources has ever suggested such side effects.  I have also never read anything even suggesting the metabolic breakdown.

QuoteMy big concern about ALC is that the Acetyl component is related to Acetic Acid and my understanding is that metabolic processes actually dump Acetic Acid in the bloodstream when we are taking ALC.  This must then be cleared by the kidneys.  That is why ALC tends to produce a distinctive oder in the urine.  The problem here is that if the kidneys fall behind in clearing the acetic acid, one can experience a toxic accumulation or buildup in the bloodstream.  This could be really hard on our internal organs.  The kidneys and liver might be quite vulnerable to damage from such a buildup, so I would advise caution.  This is only my understanding of how ALC gets metabolized, it may or may not be correct.

I appreciate George reporting his suspicions.  It is important to weigh that information with the fact that sites reporting side effects and over-dose information on supplements, state that ALC is very safe at high dosage.
Title: ALC side effects
Post by: Tim468 on July 09, 2008, 12:59:51 PM
I think that there are two issues here, perhaps three.

First, ALC may have caused a certain side effect in George. Now, I say "may" because, as George will admit, this is not science and we are not gathering statistics. Rather, he is trying to interpret the meaning of his physical sensations in light of lifestyle choices he is making. Thus, coming off of a medication and having resolution of symptoms, and having them come back when you resume the medication is highly suggestive of a relationship, but not "proof". Proof is hard to find in one individual. Nevertheless, we need to alway try to make connections - just realize we may make mistakes in interpretation.

An example of this is the use of leeches. Leeches were used for blood letting, and oddly enough, patients often improved. Now, we mostly think that it was coincidence - improvement followed applying leeches, but was not caused by the leeches. it took over 300 years for them to figure that one out.

Secondly, we are here to learn from each other - with the caveat that the other may be  "wrong", or what is right for him is wrong for you. IOW, ALC may cause a side effect in George, but in almost no one else. Nevertheless, all we can do here is our best. Even though the medical literature suggests that intralesional verapamil is a good thing, the completely non-scientific assessment of that by members of the board drives newcomers away from that choice. If we affect behaviors because of our non-scientific opinions, then why should George's opinion be discounted because he is the only one to share his experience here.

I think the answer to this is that if a problem (or good outcome) is seen by but one person, it makes sense that it is less likely to happen to all of us. Kimo got better with verapamil cream - how many of us can say that?

My reading about ALC is that this side effect is not reported at all. If two alert guys come here to post about it, then we need to pay attention. But in the end, we need to go by what our bodies tell us. I could surmise a method for it to hurt one guy but not another, but I'd be guessing...

Finally, I think that readers here need to work on not catastrophising information learned here. If someone reports a side effect, then listen to it and think it through. If you are doing well, then perhaps you can relax a bit. I took ALC for a long time, but it did not help me at all (at least, I think it didn't), so I stopped it. No side effects except a sort of giddy excitement when I took it on an empty stomach - a feeling that subsided with time.

Tim

T
Title: Re: ALC side effects ...
Post by: George999 on July 09, 2008, 04:00:17 PM
Tim and Hawk,  Thanks for the additional perspective on ALC.  Certainly my intention is not to spread panic, but it is sometimes difficult to state something strongly enough to get people's attention and yet include enough disclaimers to avoid mass panic.  I always try my best to achieve that lofty goal, but would be the first to admit that I often fall short.  I would also admit that their is a whole lot I don't know about this.  It could be a result of interaction between multiple supplements, interaction between ALC and some unique metabolic condition that I might have or any one of a number of other possibilities including that I could have been unlucky enough to get a contaminated or mislabeled product.  I think one of my major concerns here is that the ONLY indications were flu-like.  In my case I continued the ALC for weeks because flu-like symptoms are common and because absolutely nothing like this is documented relating to ALC.  So, I think it is important for anyone taking ALC long-term to be aware of this and to realize if it happens to them it *might* be the ALC.  On the other hand, what you have pointed out about ALC's safety record is comforting and would lead me to back off on my assertion that if you don't absolutely need it, don't take it.  Instead, I would say at this point, take it if it is helpful, but be aware of this potential side-effect.  There is a lot of wisdom in group thinking and that is one of the reasons that I value this forum so highly.  Thank you both so much for taking the time to enrich our understanding on this issue.  I am here to learn as well as to share!  - George
Title: FDA Alert 07/08/08 (Was: Antibiotics - Peyronies Disease - Scar Formation)
Post by: aerosick on July 09, 2008, 04:03:01 PM
Quote from: Hawk on November 30, 2005, 08:57:57 PM
Assuming the following information is accurate, rather than helping Peyronies Disease through antibacterial activity, these antibiotics are likely having a disrupting effect on the collagen/scar process.

Here is some information off of a couple websites.

Fluoroquinolones are synthetic antibiotics that effectively inhibit the metabolism, proliferation, and invasion of fibroblast cells reducing scar tissue formation. This technology differs markedly from other methods of scar tissue prevention by providing for the systemic delivery of a fluoroquinolone by oral or intravenous administration. It exploits the discovery that fluoroquinolones found at serum levels following recommended oral and intravenous dosing have an inhibitory effect on fibroblast metabolism and proliferation, as well as matrix, collagen, and proteoglycan syntheses.


The following antibiotics are Fluoroquinolones and interfere with fibrin formation:

   * Avelox 6
   * Cipro 1
   * Cipro I.V. 1
   * Floxin 8
   * Floxin I.V. 8
   * Levaquin 4
   * Maxaquin 5
   * Noroxin 7
   * Tequin 3

There is some info on a commercial site www.careforscar.com


(http://l.yimg.com/a/i/us/uh/bt2/news_logov1.gif)

FDA issues warning on Cipro, similar antibiotics (http://news.yahoo.com/s/ap/20080708/ap_on_he_me/med_antibiotics_warning;_ylt=AhjpNMh_Y.Yl51MG2V3_3nxa24cA)

Tue Jul 8, 11:25 AM ET

WASHINGTON - Federal drug safety officials have imposed the government's most urgent warning on Cipro and similar antibiotics, citing risks that they can cause tendon ruptures, a serious injury that leaves some patients incapacitated.

The Food and Drug Administration on Tuesday ordered makers of flouroquinolone drugs — a potent class of antibiotics — to add a 'black box' warning to their products, which include Cipro, Levaquin, Floxin and other medications.

Patients should immediately stop taking the medications if they develop any tendon pain, swelling or inflammation.

Title: Re: Aerosick - Cipro Warning
Post by: Hawk on July 10, 2008, 01:50:34 AM
Aerosick, you are very correct.  The warning about the side effect you mention, has been on cipro and related drugs for years (at least 5 years).  Before I understood that these drugs disrupt certain collagen formation I always wondered how an antibiotic could impact a tendon.  That was before I ever had Peyronies Disease.  I think it is to be expected that anything that systemically disrupts collagen formation could have some potential unwanted side effects.  It does however speak to strong evidence that it could disrupt Peyronies Disease plaque formation.

Cipro is still a very commonly prescribed drug for everything from prostate infections to anthrax exposure.
Title: Side effects - good or bad?
Post by: Tim468 on July 10, 2008, 08:59:43 AM
Funny to see the post here about Cipro. I give it to a lot of patients and we are gearing up for the inevitable phone calls about ruptured achilles tendons (not one of which I have seen personally).

So I log on here and see that Cipro might be able to play a role in decreasing scar formation in Peyronie's disease!

::sigh:: - see how complicated this gets?

And don't forget - many drugs have more than one effect. Zyvox, now a useful antibiotic, was first tested as an antidepressant,

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: hornman on July 10, 2008, 03:15:56 PM
I was on cipro in the beginning stages of my peyronies because the uro thought I had Prostatitus.  I still went on to develope plaque along with a dent and hourglass shape.  I also did develope pain in my joints and I,m sorry to say a sore moist rectum which I still have 5 months later.  Cipro is wicked stuff.  I don't think I would use it again.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: phil on July 13, 2008, 08:52:29 PM
My uro also thought I had a prostate infection and I was on cipro, levaquin, and tequin.  I did not develop any curvature until 1 yr after pain started. The antibiotics probably helped for the time I took them.
Title: Re: Cipro, etc. ...
Post by: George999 on July 14, 2008, 10:11:28 AM
You know, in a sense, I think this is a somewhat pointless discussion, because even in Cipro were a perfect Peyronies drug (which we all know it is not), it would not be used for Peyronies because it is a valuable antibiotic and subverting it for use against Peyronies would devalue it as an antibiotic.  You simply cannot prescribe antibiotics for long term use without generating drug resistance on the part of dangerous microbes.  So, while all this is interesting, it is not terribly useful information.  - George
Title: Cipro
Post by: Tim468 on July 15, 2008, 06:42:07 PM
George, I do not think that anyone will end up using Cipro for Peyronie's, but I do think that the discussion is valid. And I would not hesitate to take it if it would cure my Peyronies Disease.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on July 19, 2008, 07:11:08 PM
oldman or tim246 - i just found a responce from Dr Lue from when I went to see him regarding my Peyronies Disease, it goes like this:  'Yours is not a typical Peyronie's disease. It is a septal fibrosis after minor injury to the penis. If I recommend surgery, it will be minor procedure to correct whatever is bothering you at that time. It can recur if you injury the penis again in the future. '

Im not sure what this means - have you heard of it - does this mean I dont have full Peyronies Disease - and should I be using a VED if this is the case..

his response also included:


Department of Urology, University of California-San Francisco, San Francisco, California 94143-0738, USA.
PURPOSE: Classically Peyronie's disease presents with penile curvature and/or pain, and is associated with a palpable penile plaque. We frequently examine patients with suspected Peyronie's disease ultrasonographically and have noted a subset of patients in whom we could identify only a circumscribed septal lesion. We identified characteristics of these patients. MATERIALS AND METHODS: Of our series of approximately 650 patients with Peyronie's disease 47 were identified with these lesions. RESULTS: Of the 47 patients 22 presented with penile curvature with or without accompanying or preceding pain. Of the 47 patients 17 had a significant history of trauma, although only had the classic stigmata of penile fracture. A total of 16 patients had no history of curvature, 7 presented with only penile shortening or focal lack of rigidity and 5 were incidentally found to have lesions during assessment for other complaints. Three patients presenting after trauma were noted to have septal liquefied hematomas, which we aspirated under ultrasound guidance. Followup ultrasound revealed minimal septal thickening. In 1 of these patients the hematoma was adjacent to more typical-appearing septal fibrosis. CONCLUSIONS: We theorize that these hematomas are due to septal fractures and may represent a forme fruste or possibly a precursor lesion of more typical septal fibrosis. Ultrasonographic evaluation may allow earlier identification and treatment of occult septal injuries or lesions and prevent subsequent fibrosis and its associated symptoms.


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on July 19, 2008, 08:03:54 PM
Iceman:

Based on my experience with working with many guys with Peyronies Disease and those using the VED as well as other methods of therapy, I know of no reason why using the VED under moderate conditions would cause any further complications.

Again though, I urge all users of the VED therapy protocol to use caution if their approach to VED usage. VED therapy for Peyronies Disease is definitely where less is usually better than more. So, use moderate vacuum pressure and do not over over pump at any time. Any pain or discomfort should be the warning sign that too much pressure or some other problem has occurred.

I would say continue the VED therapy protocol unless you are experiencing problem of any kind.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on July 19, 2008, 09:00:45 PM
thx oldman - have you heard of septal fibrosis??
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on July 20, 2008, 09:08:57 AM
Iceman:

Yes, that is the fibrosis that occurs on the septum portion of one's penis. It can be caused by injury/trauma to the penis as the result of any accident in the groin area. It can also be caused by microtrauma from rough sex or heavy sexual activity over a period of time.

It is quite similar in nature to any other fibrosis that can occur in the penis. However, it may take longer to see any results from VED therapy or any other form of therapy due to it being more or less vertical between the two corporal chambers.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on July 20, 2008, 04:17:38 PM
I would recommend getting the full text version of Lue's article on septal fibrosis and reading it carefully. It will tell you what you need to know (plus some). Take your time, look up medical terms that you do not know, and take the time to understand it - I think it is a very good article, but frequently not read completely or understood by many (for reasons I do not get).

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on July 20, 2008, 07:38:09 PM
oldman - does this mean I wont see any benefit or is it just a matter of time for me?? - so does the 26 week protocol mean it has to be done again with VED usage??

Have you heard or spoken to anyone whos had this?? - what im trying to say is that does this mean i am stuffed and theres no hope?? - i mean i am trying everything mention here...
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on July 20, 2008, 07:57:41 PM
tim468 - do you know how to get this article - is there a link i can go to??
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on July 20, 2008, 09:24:37 PM
Iceman:

By all means continue your VED usage with the 26 week protocol. If it does nothing more than keep a good blood supply flow into your erectile chambers, it is worth the effort. However, I would dare say that you will see some benefits with the septal issue also.

There are probably more of the septal plaques than we realize. Plaque has a way of appearing in various ways and in many places, especially in one's penis.

This does not mean that you are doomed so to speak, consider it as just another problem to overcome. I know that you should keep up any and all treatments/therapy you are doing.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on July 20, 2008, 09:29:17 PM
thx oldman - your words keep me strong...
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on July 20, 2008, 09:32:48 PM
Iceman:

No problem, just keep the faith and something good will happen for you.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on July 21, 2008, 12:21:35 AM
I googled Lue septal fibrosis Peyronie's and got the following links:

http://www.medicalnewstoday.com/articles/62103.php

http://urology.ucsf.edu/faculty/facLue_pubs.html

I can get to the article, but it does not work unless you are with a medical school library (as am I).

Tim

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: phil on July 21, 2008, 05:03:48 AM
Re:antibiotic use.

I think the taking of antibiotics helped to hold off the developing of a plaque and curvature.  I'm not advocating taking cipro because it is a very powerful antibiotic that has some side effects.  I did take ampicillin and one other one.  If a low dose may forestall developing Peyronies Disease it is worth noting.  At the time if I knew that taking it might be helping my developing case of Peyronies Disease it might have been worth trying a low dose maintenance program.  Plus, I don't think anyone has totally ruled out, as completely impossible,  an infectious cause for some peyronies cases. I'm not saying that's what happened.  More likely the antibiotic interfered with the collagen and scar formation.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on July 21, 2008, 10:13:35 AM
Interesting observations Phil. However, I don't think that ampicillin/amoxicillin is comparable to Cipro when it comes to an effect on collagen formation.

The thought about a low grade infection is intriguing. I think some have thought of this in the past, but epidemiological studies did not support Peyronies Disease being related to a sexually transmitted disease, though it could be a different sort of infection (not transmitted sexually). Remember how far-fetched it was to imagine that ulcers might be due to infections (everyone blamed stress and acidic foods), but it is now accepted that helicobacter pylori causes this.

Finally, I just finished reading a good article on why fluoroquinolones (including cipro)are not as bad for tendons as people are saying - the risk is primarily for those with renal failure and/or concurrent use of steroids. Here is the abstract:

"With the expanded use of fluoroquinolones for the treatment of community-acquired respiratory infections and reports of tendon injury linked to the use of these agents, we reviewed the literature to investigate the frequency and strength of this association. Ninety-eight case reports were available for review. The incidence of tendon injury associated with fluoroquinolone use is low in a healthy population but increases in patients who have renal dysfunction, who are undergoing hemodialysis, or who have received renal transplants. Pefloxacin and ciprofloxacin were most frequently implicated, but tendon injury was reported with most fluoroquinolones. The median duration of fluoroquinolone treatment before the onset of tendon injury was 8 days, although symptoms occurred as early as 2 hours after the first dose and as late as 6 months after treatment was stopped. Up to one-half of patients experienced tendon rupture, and almost one-third received long-term corticosteroid therapy. Tendon injury associated with fluoroquinolone use is significant, and risk factors such as renal disease or concurrent corticosteroid use must be considered when these agents are prescribed."

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: phil on July 25, 2008, 10:37:52 PM
Tim,

Back in 2006 in the prostate subject area I related that my Peyronies Disease started the same time as my infection.  I believe Angus also had a similar experience, and over the years maybe one or two others had mentioned similar coincidences.  Yes, ulcers caused by bacteria! amazing when you think about all the studies, upper GI's, scopes, etc and antacids, tagamet etc and millions of people over the years with ulcers being treated and no detection of an infectious agent.
I took cipro for 2 weeks, followed by levaquin for 21 days, followed by tequin for 30 days.  I developed muscular pain and so after a vas sample my uro switched me to ampicillin for 60 days to knock it out.  I had several positive cultures over that time for enterococcus.  I know staph causes scarring in certain infections.   Who knows?

Phil
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: sflo on July 26, 2008, 11:32:49 PM
Hello all im pretty new to the forum.  I am kind of in a predicament and need help. I got peyroines not too long ago maybe 10 months ago.  I am 21. I started taking vitamin E in combo with ALC, enzymes and what not. My uro recently prescribed me trental and said i should be fine with that and ALC, but i was still seeing problems with my skin and face especially. The plaques started to go away and my monster one started to go away as well. I started to see serious side effects though. My face started to scar like acne scarring but without acne, just skin loss. I also started to wrinkle on my face and body as well. even holes of loss skin on my body although small but still there. I started to put two and two together preformed some reasearch and realized that it was all the supplements because they inhibit collagen formation and inhibit fibroblasts information. 

I tested my idea by gettin off everything, and noticed my skin get better imediatley, but my penis got worse. aka shrinkage, and distrotion. But once back on i see increased gains in normal size and shape.  I have been going on and off to test this and I believe I am correct. Between researching every supplement and its affects on other parts of the body, it totally makes sense. other people  have been on these supplements and what not and take many at once and have not had such effects.

Most importantly I realize vitamin E is truly very effective for me, because once on it i feel the blood flow, and the plaques soften and diminish. I recently tried dmso with vitamin E tablet popped open applied topically and it worked wonders for me. No lie. This was not natural healing either because once off everything I lost serious length, and girth, but regained it once I got back on.  I guess because I am young and my body reacts strongly to everything I take. This is the catch 22 though. It really has affected my face and skin over my body bad. I really dont know what to do.

I have contacted old man and looked into VED to try and maybe attack it that way. Just kinda torn at this point I posted earlier with my problem but no one has commented and really need some advice. I really know I can combat this monster, but it will leave me with other battle scars literally. I know some might look at this and scoff and think i should be happy to have such pronounced effects to the supplements  to alleviate peyroines but again my face is very important to me as well as my body and I dont want it to be destroyed in the process. I have went to the derm too and  of course she said get off everything except a multi, and I should see a lota of healing in my skin. But again what about my member??????I am expected to meet with Dr mulhall the peyroines specialist at Cornell.

I thought topically would be the way to go hence the DMSO and vitamin E but I instantly saw affects in my face due to the strong penetrating ability of DMSO. Can anyone give me some advice or what not. I kno my case seems truly unique but I would appreciate it.

sflo
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: George999 on July 27, 2008, 12:21:32 PM
Quote from: sflo on July 26, 2008, 11:32:49 PMMy uro recently prescribed me trental and said i should be fine with that and ALC, but i was still seeing problems with my skin and face especially.

I have went to the derm too and  of course she said get off everything except a multi, and I should see a lota of healing in my skin.

sflo,  If your dermatologist really told you to quit Trental after the urologist prescribed it for you, you need to find another dermatologist fast because what this one is recommending is not ethical.  If, on the other hand, the dermatologist was only referring to the supplements, that is a sign that the dermatologist is simply being lazy and I would STILL look for another dermatologist.  All of the supplements and the Trental have completely different pharmacologies.  The contention that there is some sort of Collagen link between them that is causing your problem is too simplistic to be believable.  The human body is more complex than that.  One or more of the supplements MAY be causing this problem.  But simply dropping everything, especially dropping the Trental, is NOT the solution to your problem.  - George
Title: sflo's dilemma
Post by: Tim468 on July 27, 2008, 02:21:22 PM
sflo,

I would do what the dermatologist suggested - for a week. Once I saw improvement in the face, I would start to add back medications one at a time. It seems that you have been trying this approach sort of. I would start with the most important ones first (ie the pentox). Hopefully, as you go, you will figure out a balance.

This raises a philosophical question - would you rather save your face or your penis? Wow - what a decision!

If you face seems reparable, then I would favor working on my penis, and assume that I could remedy the face later. Or vice versa. If I had to make a choice, I am not sure how it would go.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: sflo on July 27, 2008, 02:29:41 PM
yeah its amazing and annoying because I know I can combat this thing. My penis is very responsive to the therapies when i use em I see the diff. Once i get off them I cant even maintain an erection just to give u an idea how fast the progression is occuring. my skin is important and i always had great skin, and my face especially.  I really dont kno. By the way what has been most effective for me is  vitamin E tablet popped open while rubbing in dmso. More than pentox I would say.  I literally saw such results. Again , yeah i am trying to figure it out.  I dunno. I am considering just going witha  VED, and hitting it like that because although some people argue about pharmacology and collagen content it makes perfect sense. Hence why some people saw no effect with vitamin E while others it worked. Dunno. I will keep you posted, and try to figure it out. I am debating too, should i just hit the meds hard, take it to my face and then hope it heals after or what lol? at least with the VED (which i am waiting on cuz i cant afford at the moment), I wont be throwing off my internal chemistry and just hitting it like physical therapy so to speak. Keep u guys posted.
Title: Re: sflo ...
Post by: George999 on July 27, 2008, 03:45:31 PM
sflo,  My argument here is that Collagen doesn't deposit and get blown away in a period of days no matter what your age is.  So a lump that goes away in weeks or less after starting Pentox is NOT Collagen.  Likewise, the changes in your skin are NOT related to Collagen changes.  The time frame is simply to short for that to happen.  But lumps CAN be caused by inflammation, and Pentox is a major inhibitor of inflammation far in excess of whatever effects it may have on Collagen.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: hornman on July 28, 2008, 02:58:23 PM
CONCERNING THE PLAQUE. I have noticed that the small bumps I can feel in my flaccid state grow to be a much larger mass that surrounds the base of my member when erect. This creates the hourglass look.  The base is wider than normal and the top half is narrower.  Would this be typical for peyronies?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Ralf3 on July 28, 2008, 03:07:59 PM
Quote from: phil on July 25, 2008, 10:37:52 PM

I took cipro for 2 weeks, followed by levaquin for 21 days, followed by tequin for 30 days.  I developed muscular pain and so after a vas sample my uro switched me to ampicillin for 60 days to knock it out.  I had several positive cultures over that time for enterococcus.  I know staph causes scarring in certain infections.   Who knows?

Phil

Phil, I am not aware of any relation of this to scarring condition in my penis tissue, but they discovered Staphylococcus aureus on my glans short after the scarring onset. The doctor told me that Staph could be also inside the penis, but didn`t do anything and sent me home (!!). I applied some creames to the glans, prescribed by dermatologist, but no positive reaction as well as there is no improvement in the scarring  :'(   ;)
But I think it probably is connected...
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on July 29, 2008, 12:26:34 AM
Wow, some diverse themes here!

Staph infection in the tissue could certainly lead to damage to the tissue, wherever it is in the body. So direct tissue damage could do it. Some of us have wondered whether or not generalized inflammation in the body triggered by infection elsewhere might be linked to Peyronie's Disease (the way that chronic gum disease causes heart disease).

In that case, treatment with antibiotics is important for reducing the infection itself.  In other situations, we been talking about how antibiotics, used to treat infections, may help Peyronie's as a side effect of the antibiotic. These represent to very different ways antibiotics could be helpful for Peyronie's disease.

Hornman,

Small bumps that get larger with erection does not sound like Peyronie's disease to me - it sounds like erectile tissue. Since what you are describing sounds like it is outside of the Tunica it could be vascular engorgement.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: soonerokie on July 31, 2008, 04:40:31 PM
not sure if i'm doing this right, but i guess i'll soon find out.  61 years of age and was diagnosed august 2007 with peyronie's without physical examination...uro said it was Peyronies Disease on my description of penis and experiencing pain during nigh with night time erections.  doc said take 800 mg vit e daily and apply to area of bend.  i've never felt any bumps or lumps at the bend, but feel discomfort with pressure.  at the point of the bend there is a definite thinning of my penis and forskin has started to slip over the head.  symptoms developed after ediograph surgery during which a catheter had been inserted.  i have high blood pressure and i'm taking a couple of med's for that plus advair for breathing problems.  still have not had a physical exam and was last told to keep up vit e treatments and come back next year.  any chance this is something other than peyronies...does anything else give the same symptoms?  if so, i've not been able to find it on the net.  thanks for advice in advance!!!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on July 31, 2008, 04:59:19 PM
soonerokie

Sounds like it to me. Might want to consider if you can get off a Beta blocker if you are on one as they can cause Peyronie's. Additionally, you might want to do more than vitamin E, though that is a good start.

Read the "Child Boards" and you will find a lot of helpful information. Hang in there - you will see that a lot of potential help is there - for most of us we have faced several defining issues:

First - is it really Peyronie's Disease? You are smart to want to nail down the diagnosis.

Second, have you been seen by a good urologist? "Good" is subjective, but many of us need to search to find one willing to provide us supportive help. It isn't clear who saw you (and it is good that they were willing to do something for you), but a more thorough evaluation might be in order.

Third, are we really well-informed? This is where we can do a lot to learn more here.

Four - don't make hasty decisions or choices. This is the time to sit back and to gather some information before acting. I say this with one exception - most of us feel that regular erections are good for erectile tissue (use it or lose it, they say, and it may be true for Peyronie's Disease). Therefore, getting better blood flow with viagra (or other similar drugs) may help as well as using the VED which will pull fresh blood in as well as stretching out the tissue to prevent or fix contraction and worsening of the angle.

Welcome! Read up here and I hope this post helps!

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Rocketsfan34 on August 01, 2008, 05:47:20 PM
Hello,

I am new to this forum.  For a quick background of my history, I had the Nesbit plication procedure done in September of 2006 by a specialist who is experienced with these type of surgeries.  It was done to try to correct a left curvature, so 2 sutures were inserted on the right side of the middle of the shaft.

Since the surgery (which has now been almost 2 years), I have not had normal sensation in about the last inch of the underneath right side of my penis.  It is very dull when compared to the natural sexual sensation I can feel on the left side.  As you can imagine, this is very frustrating to me.  Had I known this would be the result, I would have not gone through with the surgery.  Hindsight is always 20/20.

I was wondering if anyone else on here has had surgery and has also lost sensation as a result?  I now often consider whether it would be possible to have these two sutures safely removed, and if that might open up some channels for the sensory nerves to grow back better.  My curvature has almost completely returned since the surgery, and I would much rather have my feeling back and just deal with the curvature. Of course, I also realize that more surgery carries risks and there is a chance that it could also worsen my situation.  Therefore, I am just trying to due my due diligence and get as many opinions and / or as much advice as possible on my current situation.  Thanks in advance for any help you can provide, and if anyone knows of any doctors that might be able to help me with regards to regenerating the nerves and restoring sensation, I'm all ears.  I have no problems traveling to visit a doctor, if I think there is a decent chance that they can help me.

Rocketsfan34
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on August 01, 2008, 09:39:49 PM
Rockets.
I had surgery less than 2 weeks ago. But I did not have the nesbit plication. My bend was greater and required excision and grafting. So far I am very pleased with the results, but I know it is a bit early to tell. I am now getting erections, and although still a little painful, it is straight! And I seem to have good sensation all over my penis. So far so good, but won't know the full story for several weeks yet.

It is my understaninding that the primary penis nerve bundle runs down the top of the penis. So if your sutures are on the side, unfortunately I don't think that having them removed may help you much. But I certainly am no expert on that one. I've posted my story in the "Meet the members" section, and also recenlty created my own website on my experience.  http://home.comcast.net/~lcwillisjr  (http://home.comcast.net/~lcwillisjr)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on August 01, 2008, 11:37:00 PM
Dear Rocketsfan

It is most likely that the nerves that are impaired are surface nerves to the skin, in the skin. When you cut through the skin, the sensation "downstream" is cut off forever. Since the nerves serve the side skin, instead of the more "important" (meaning intensely pleasurable) head of the penis, that may be how it is going to remain (since nerves grow back slowly, but an inch should be reinnervated by now).

So, removing the sutures is not going to change it - the sutures are deep to the skin, located in the tunica of the penis. If the curve is back, and your penis has gone back to what it used to look like, then the sutures have slipped out anyway (it happens). If instead, the curve is back, but the penis is shorter, then the sutures have held, but the opposite side has scarred *more* so that it curves to that side again anyway.

In either event, I wouldn't want to do the same thing again!

If you can get erections, have orgasms and sex, I would leave it well enough alone.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: sams on August 07, 2008, 09:44:36 AM
Just wondered if anyone has problems with urination.
Does peyronies disease have any effect on urination? If so, how can it be explained
The reason i am asking is that it looks like i have some kind of problem while urinating.  Therefore thinking about if scarring can narrow the urethrea, and therefore cause problems with urination in peyronies disease, or could it be something else causing this?

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jon on August 07, 2008, 03:17:47 PM
Quote from: sams on August 07, 2008, 09:44:36 AM
Just wondered if anyone has problems with urination.
Does peyronies disease have any effect on urination? If so, how can it be explained
The reason i am asking is that it looks like i have some kind of problem while urinating.  Therefore thinking about if scarring can narrow the urethrea, and therefore cause problems with urination in peyronies disease, or could it be something else causing this?
I'm not sure. I'm not having problems urinating, but I do have issues with ejaculating which I think could be tied to peyronie's. I've got a uro appointment coming up, and that's one of the things I plan on discussing.
Title: Re: Urination issues ...
Post by: George999 on August 08, 2008, 12:19:07 AM
I recently had a discussion with a doc about this, I can't remember where, but I *think* it may have been a doc at Dr Lue's office.  The conclusion seemed to be that inflammation might be able to "overflow" from the tunica to other tissues, including the urethra, causing a *temporary* restriction in urine.  Temporary because the urethra *usually* would have enough blood supply to resist becoming scarred, but would very possibly constrict in response to surrounding inflammation.  But, that constriction could lead to UTIs which present their own risks.  Inflammation and scarring are a bad thing and tend to be systemic.  So having it in the penis means that one is much more likely to have it elsewhere as well, in the kidneys, lungs, liver, heart, etc.  It is REALLY important to get control over it.  - George
Title: Re: Urination issues ...
Post by: Ralf3 on August 08, 2008, 10:55:02 AM
Quote from: George999 on August 08, 2008, 12:19:07 AM
So having it in the penis means that one is much more likely to have it elsewhere as well, in the kidneys, lungs, liver, heart, etc.  It is REALLY important to get control over it.  - George

Well, this sounds scary and deadly serious...so maybe it should be good to get a SONO (ultrasonograph) survey of these organs regularly...would the SONO show such scarring (fibrosis) in these organs ?
Are there any reports about spreading this condition to other organs ? Except the Dupuytrens disease.
Title: Re: Inflammation, etc ...
Post by: George999 on August 08, 2008, 01:08:57 PM
Ralf,  The point here is that if you look at the data, it is not just about Dupuytrens and Peyronies, it is about ED as a class and Heart Disease as well.  It is about all of the eventual manifestations of Diabetes (and a number of top experts are already talking about really redefining Diabetes).  But I don't think that warrants running out and going on a medical fishing expedition.  I do think it warrants seriously looking at the kind of lifestyle issues that tend to promote these afflictions, because when you have one of them, there is increased risk of more.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: sams on August 09, 2008, 12:40:24 PM
My question is if everybody has been diagnosed to have peyronie's by urologist, or is there people here who
actually has not been diagnosed by the uro?
I am into my 6th month now, and recently have seen my third urologist who says that i don't have peyronie's. However, i strongly believe the opposite. There is some deviation, without pain when erect. There are also no plagues present when flaccid at site of angulation in ultrasound which is their reason to believe that i do not have peyronies, and i cant find any when erect.  However, i have burning pain on tip of the penis which can get very very difficult to handle at times. I have a small node at other side of peyronies which move with skin, that i dont think is related to peyronies. What can it be?
I have read alot on this forum, and it seems that peyronies may effect people somewhat differently. I have read alot, and still confused about it 
My question from the experienced gentlemen here is how you define peyronies? What are your symptoms?
Do you feel plague when erect/flaccid? Does the plague have to be at site of angulation? Do you experience pain when erect? Hope to get some answers from you guys. These answers could help us alot who are new into this and not able to understand what is going on
Regards
Sam
Title: Re: sams
Post by: Ralf3 on August 09, 2008, 01:03:28 PM
Quote from: sams on August 09, 2008, 12:40:24 PM
My question is if everybody has been diagnosed to have peyronie's by urologist, or is there people here who
actually has not been diagnosed by the uro?

This is actually my case too, because I have seen three urologists, the first one gave me only anti-inflammatory pills, then made complete urological examination (ultrasound of kidneys, bladder and scrotum, prostate examination and told me he couldnt see any pathological changes. I told him I DID FEEL some changes in my penis (tissue hardening)...doctors usually dont listen to what patient says, that is making me very sad. The second one did Color Doppler, but only when flaccid, so as if he did nothing, and told me it COULDNT BE Peyronies, because I am very young person (!). And the third one made ultrasound of my penis but only when flaccid again. He told me he saw no calcifications etc...and then he only wanted to sell Viagra..
Title: Re: Inflammation and Plaque ...
Post by: George999 on August 09, 2008, 05:24:42 PM
My contention is that "Plaque" can be one of three things or a combination of any of the three:

1) Inflammation - Inflammation can create a thick swelling that is palpable (like the thickening one experiences with a nasty bruise).  The plaques that result exclusively from inflammation can come and go over a period of hours.  Inflammation plaques CAN cause physical deformity.  If one has a deformity which increases and decreases over a short period of time, that would indicate that inflammation is involved.  Inflammation is generally the cause of any pain associated with Peyronies.  Problems caused by inflammation will NOT show up on ultra sound and may not be palpable at the time of an examination because they can come and go.  This is the condition where Pentox provides the most benefit.

2) Tissue Buildup -  This is the classic Peyronies Plaque commonly referred to as excessive Collagen.  These plaques do not tend to come and go quickly but build up over time and are very difficult to eradicate.  They tend to cause inflammation which results in even more swelling and deformity.  This type of plaque is often more palpable in the erect penis than the flaccid penis.  This is because rather than being a "lump" they tend to be a broad area of uniformly thickened tissue which feels abnormally hard when erect.  This type of condition will show up on an ultrasound exam.  Although Pentox may help in alleviating this condition, new drugs like Xiaflex and Alagebrium are the major hope for diminishing excessive tissue buildup.  The only current means of dealing with Tissue Buildup is VED and Aloe Vera which *may* be helpful over a long period of time.

3) Calcification -  This is really the end stage of the fibrotic process where the thickened tissue becomes infiltrated by calcium and hardens.  This condition is revealed by ultrasound.  This is the most difficult stage of Peyronies to treat.  Personally, I don't believe it is irreversible, but I tend to be an unrepentant optimist when it comes to these things.  But it is best to avoid getting to this stage if possible.  Calcification tends to occur from longstanding inflammation in the presence of tissue accumulation.

The above is only my understanding of how this disease progresses based on my own experience and the observations of the experiences of others.  I believe that there is a complexity with this disease that tends to confound many urologists who deal with it only occasionally and who simply don't have the time to study it in depth.  That is why it sometimes is worthwhile to travel to a real Peyonies specialist for treatment.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on August 11, 2008, 03:53:13 PM
Sam's,
Everything I understand about Peyronie's states that there is "palpable" plaque. This means you can feel it. And the plaque forms on something call the tunica. This is the tissue that your outer layer of skin slides over. So any bumps or abnormalities that slide with the skin would not be on the tunica, and I don't think this would be Peyronie's. There are several medical cites that provide a decent description of this.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: sams on August 11, 2008, 05:15:22 PM
Quote from: lwillisjr on August 11, 2008, 03:53:13 PM
Sam's,
Everything I understand about Peyronie's states that there is "palpable" plaque. This means you can feel it. And the plaque forms on something call the tunica. This is the tissue that your outer layer of skin slides over. So any bumps or abnormalities that slide with the skin would not be on the tunica, and I don't think this would be Peyronie's. There are several medical cites that provide a decent description of this.

Thanks, Iwillisjr
I have seen three urologists, and have been searching through medical sites, but not been able to find any answers to this.  However, just recently a small lump has appeared next to protrudent veins when erect which seems to originate from deeper in the tissue. This makes me wonder that i might have peyronies, after 6months in doubt.
Unfortunately, i live in Europe which makes it difficult to find a specialist in Peyronie's
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: beginer on August 12, 2008, 12:49:19 AM
hello all, this is my first post I am a new member I, ten days ago noticed a small dent on the left side and a new curvature, I have always been straight it just appeared I guess after a recent sexual encounter I didn't think was that rough. Anyways I am 29 years old, I think I am starting to see another formation at the top right, and maybe even a bb looking bumb, is this common and is there a chance my bend with get worse and/ or other bends will develop?

It appears from everything I've read which is a lot over the last couple of days the VED is one of the only procedures that positive results have occured, is this true for most?

Also is it anyones experience or knowledge that this does go away naturally or is that just a fairy tale?

Thanks any help on this matter would be greatly appreciated.

B
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: joe on August 12, 2008, 10:15:56 PM
beginer,

Your story brings me flashbacks of less than 2 years ago when I "noticed a small dent on the left side".  I was 27 at the time and I hate to say it but every few months it seemed that small dent doubled in size.  It didn't continuously get larger but seemed to be stable for a while and then overnight would spread and double in size.  I waited a full year before seeing the urologist, thinking I could take things like Vitamin E and eat healthy and I'd be one of the lucky cases that resolved on its own (I think that is a fairy tale btw).  In retrospect I believe that being young & healthy only makes us better at building scar tissue.

My urologist gave me potaba which seems to have stopped the progression but hasn't reversed the damage.  I plan to get pentox soon.  I would try to see a urologist asap, but I saw in another post you mentioned that you didn't have insurance.  If I were in your shoes I would probably try to order the pentox online that was mentioned on these boards - although you really need to make sure it is peyronie's and not something else which could be serious.  I haven't yet tried the VED - I am hesitant to stretch and pull on the scar.  I don't see how that could be good in the active phase of the disease.  Maybe once everything else fails and it has truly stabilized.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: beginer on August 13, 2008, 12:19:05 AM
Joe,

Greeeeeeeeeeaaaaaaaaaat, that really sucks to hear, I was hoping this was as worse as it may get, I guess I need to find a way to see a urologist and use the pentox, yeah I'm not sure if the VED will help in the active stage, of course I know close to nothing about it all, so this is really disappointing!! So what degree curve did u end up with, have u heard that in most cases it continues to grow worse? So I guess the best thing is to begin some kind of treatment and try to minimize the effects, any other comments of what I can expect would be great appreciated by anyone.

Thanks
B
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on August 13, 2008, 10:15:24 AM
joe & beginer:

Read your posts with interest about the VED usage during the early stages of Peyronies Disease. Yes you can use the VED especially during the early stages. Constant daily stretching of the plaque, nodules and curves can and will help in most cases. However, you should be sure that you in fact do have Peyronies Disease before embarking on other forms of therapy/treatment.  There are many posts among the topics on this forum that can provide worlds of good information about what to do and what not to do.

My Peyronies Disease started when I was 24 and had the VED been available at that time, I would have started using it at once. I found out the hard way that Peyronies Disease had struck. Many and varied things were tried to help, but all failed until the VED was prescribed by my uro.

So, I guess what I am saying is that you guys should make sure that you do have Peyronies Disease and get started on some form of therapy/treatment at once. Delaying will only lead to further problems. Take it from the experienced guys on this forum.

If we can help in any way, feel free to ask any and all questions, we are here to help.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: joe on August 13, 2008, 11:10:57 PM
beginer,
I didn't mean to depress you or anything, just maybe scare you into action.  I am a pretty optimistic person but I wish I had been a little less optimistic earlier about the peyronie's and maybe nipped it in the bud when it wasn't as bad.  I really did nothing but take vitamin E and ALC for a year and hope it would fix itself.  As I said the potaba has seemed to have stopped the progression for me (although it could have just stabilized after a year).  I have about a 40 degree bend up and 10 degree to the left - but it is bent near the base so its maybe not as noticeable as if it were bent somewhere the middle. 

Old Man,
I really respect all the help you give us guys here.  I was actually a little hesitant to dismiss the VED because I know its popular here and I really have no firsthand experience with it.  Its just hard for me to believe that stretching it can be good - I guess I'm just stubborn.   :)  I'll probably try it eventually and thank you.

Title: Re: Stretching ...
Post by: George999 on August 14, 2008, 11:15:34 AM
How can stretching be good for damaged connective tissue?  Well, because that is one of the things that is generally recommended when you have a problem with most other sorts of damaged connective tissues.  Like tendons for example.  It is why they get you up and walking as soon as possible after the surgery.  The body is made for motion and activity and inactivity and lack of motion are toxic for the tissues.  Of course, it is entirely possible to over stretch tissues.  This is why it is important to learn the right way from the experts like Old Man.  But the reality is, healthy stretching is not just effective, it is very therapeutic in dealing with the root issues involved.  I would say it gets just about as close as possible to a cure as one can get these days.  And for the record, I am not a VED user, but I am convinced as to its effectiveness and usefulness in treating Peyronies.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on August 14, 2008, 12:00:11 PM
joe:

Many years ago, a car manufacturer had a sales slogan that went something like this: "Eye it, try it and buy it, you might like it."

This slogan could be applied to using the VED for Peyronies Disease. There are many guys on this forum that have used it with success in varying degrees. As George999 says in his post below, the VED does present a viable therapy/treatment for Peyronies Disease in any form. 

About the only person who would have trouble using a VED is one with such a severe bend/curve that fitting into the cylinder would almost next to impossible. Even then manual stretching of the penis can and will lend itself toward good therapy.

Old Man.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: nemo on August 14, 2008, 06:36:50 PM
Other than the fact that you probably should have posted in "Oral Medications" it sounds like you're on top of things and used this web site correctly!  Your doctor sounds like one of the enlightened few, prescribing trazodone and pentox - you should consider yourself very lucky, indeed.   Your supp and med intake sounds right on the money to me ... good luck with your condition.

Nemo
Title: Re: sgtnick ...
Post by: George999 on August 14, 2008, 09:29:22 PM
sgtnick,  Do you mind sharing who your doctor is?  There are a lot of people on this site who are trying to find a doc that is that knowledgeable about Peyronies.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: nemo on August 15, 2008, 11:16:20 AM
Nick, Old Man will line you out on the VED ... check out some of his previous posts in the VED forum, he's the expert on this board: he is to the VED what George is to supplements, what Tim is to medical issues, and what I am to anxiety!  LOL

Good luck,
Nemo
Title: Re: sgtnick ...
Post by: George999 on August 15, 2008, 11:42:56 AM
sgtnick,  I actually missed the part about your doctor being a GP.  As such, he probably doesn't want to get into some sort of Peyronies specialty, so I understand why you would be hesitant to share his name.  I just made the assumption that he was a urologist.  But I am so glad for you to have such a wonderful primary doctor!  And congratulations on doing your homework first in a way that gave him enough confidence to be able to prescribe these meds for you.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: wayne999 on August 16, 2008, 12:58:21 AM
Hi all, been following the forums for a bit and decided to finally post

I'm 21 and suspect that i've had Peyronies Disease for probably at least 4 or 5 years if not more. I would estimate I have about a 45 to 55 degree bend downwards that begins about an inch and a half from the base. From where the bending occurs to my base, i can definitately observe my member being noticeably narrower than the other part. I have a very good idea of how I got all this, probably resulting from dry masturbating face down on the mattress since maybe I was 8 or 9 years old (I did that probably until I was 16). So i think that any drugs (pentox,  vit E, etc) would be late for me now....as it seems to me that the condition has stabilized and probably calcified? I never really experienced any pain with it from what I can remember, and i'm also unsure as to how people can "see" their plaques, i mean if i feel around the site of bending when flacid then i sort of feel it being a bit harder but i'm not sure.

I was always (and still can) able to get good erections so I don't think i'm dealing with any ED issues. I'm yet to see a doctor, but i plan to do that soon, although i feel i will just end up forking out some decent cash to be told what i already fear now: "nothing can be done so live with it". Also, when fully erect I can't get my penis to go all the way back to my stomach (consistent with the bending earlier described). However if i put it againt my belly when flacid or semi-erect, and then stimulate it, I can get it flat against my belly (but the few times ive tried masturbating like this I sometimes get a weird ever-so-slightly tingling sensation in my penis....so im going to have to find out if its safe to do that).

I'm a realist and i dont really see my condition getting "reversed" (sigh!) , so if anything i'd just want to know how to make sure its stabilized and doesnt get any worse...and also how to ensure that this scar tissue wont bring on any ED in say 5 or 10 years? (*gasp*!)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on August 16, 2008, 04:01:37 AM
Wayne999,

For sure I would recommend you try to at least get a proper diagnosis. There are other reasons for bent erection besides Peyronies. There is a lot of great information on this site, and many willing to offer advice. My concern is it seems a lot of guys are self diagnosing themselves.  There are many good therapies discussed on this forum, and many are used for curved erections whether due to Peyronies, congenital curvature, etc.

But I always feel is best to at least get a proper diagnosis so you can follow the best line of treatment for your particular condition, whatever that is. The key......  is of course finding a good urologist. There are a few discussed on this site and maybe some of the guys here can point you in the right direction depending on where you live.

And finally.....   many guys (including me) were looking for that single "cure all" therapy. Enough of us get hung up on size, let alone being curved or not being able to function sexually. And so we want the quick fix, and  unfortunately it doesn't exist. Some therapies that work well for some, don't do anything for others. So be open to trying different things, and if something doesn't work, try something else.

Be positive, do your homework on this site, and don't be afraid to ask questions. I've come to learn the much of the disparity about this disease (I hate referring to Peyronie's as a disease) is lack of education. I can't believe so many men have this, but didn't know anything about it in advance. Being educated is half the mental battle IMHO.    ;)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: beginer on August 16, 2008, 04:49:12 PM
Irwillis I was just wondering what are some other causes that may cause a bent/ curved penis?

Thanks
B
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on August 17, 2008, 04:55:02 AM
B,
I'll be the first to admit that I am not a doctor and don't have all the answers. But since having this for 1.5 years now I have done much of my own homework as well. I know more about penis anatomy than I ever have in my life. Amazing we don't do a good job from one generation to the next on passing this information along.

Here's the bottom line. I have learned that the penis is a very amazing and complex organ, just like many others in the human body. And even to obtain an erection is a complicated process, the penis just doesn't "fill with blood and get hard". If anything goes wrong with the process, it can lead to ED, curvature, etc. What I'm concerned about is that almost anything you search for on the Internet regarding a bent penis will lead you to Peyronie's diagnosis, and then another click or 2 to someone wanting to sell you herbal drugs or a traction device. Peyronie's doesn't mean "curved penis", it is the result of a very specific type of cause for a bent penis. I just want to be cautious that guys don't just assume they have Peyronie's disease because their erection is bent, and pursue a therapy for Peyronie's when they should be doing something different.

For example......  I've seen several guys post here they heard a "pop" after either sexual intercourse or rigorous masterbation. Now they think they have Peyronie's when indeed they could have a penile fracture. This requires immediate attention by a doctor. Go to the following web site:  http://en.wikipedia.org/wiki/Penis (http://en.wikipedia.org/wiki/Penis)  There is much information here on basic penis anatomy and some of the various disorders which can occur. Also maybe Dr. Tim468 would have additional information on other types of reasons that curvature can occur.

The key is to get to a good urologist and seek a professional diagnosis.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: beginer on August 17, 2008, 11:45:50 AM
I agree with you, it makes plenty of sense, it's unfortunate that I don't have insurance and many of the local urologist I have looked at don't mention Peyronies Disease as one of their...specialties..or whatever it is, so I don't mind spending the money to see a urologist but I just want to make sure my money is well spent.

I see it is very important to do so, so I will and thank you for your advice. I will state that I'm making my assumptions not only because of the bend but also the hardened tissue below the bend and the similarity in the looks of mine based on some I've seen online. I'll be looking to get a proffesional opinion as soon as I can.

Thank you very much,

Beg.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackisback on August 18, 2008, 12:09:54 AM
Wayne,

You should do the research to find a doctor at a well respected medical facility close to you. Do your research before so that you will sound like you know what you're talking about and so that you can ask the right, detailed questions. Your case actually could be good for surgery, because from what I've heard it's the people who do not have ED already that are the best candidates. For some reason I think if the plaque is effecting erectile function it's more risky to start messing with that plaque. But you should go ASAP IMHO b/c I think sometimes the doctors may want to wait a year to see how you develop, although this might not be the case for you as your curve sounds like enough that it clearly isn't new.  Just make sure you go to a good doctor who has something on the hospital's website that says he specializes in Peyronie's or you'll likely get someone who doesn't appear to be as informed as you might be after doing your research.

Best of luck, and about the Vitamin E stuff, the results are usually minimal, but definitely you want more than 100IU, and you want a full spectrum E 400 IU of it. I use some stuff from Primordial Performance. It's a powder. I don't know if it's any good or not. They seem to have a good rep, but I think part of that is from fake posts on message board forums from supposed users. Still I use a lot of their stuff, and I don't plan to switch anytime soon.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on August 18, 2008, 07:00:43 AM
Beginer
What part of the county do you live in? Some of us have doctors within a days drive that are Male Sexual Function Specialist. General Practice Urologist can be a waste of time and money.IMHO
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: wayne999 on August 18, 2008, 09:39:25 AM
Quote from: jackisback on August 18, 2008, 12:09:54 AM
Wayne,

You should do the research to find a doctor at a well respected medical facility close to you. Do your research before so that you will sound like you know what you're talking about and so that you can ask the right, detailed questions. Your case actually could be good for surgery, because from what I've heard it's the people who do not have ED already that are the best candidates. For some reason I think if the plaque is effecting erectile function it's more risky to start messing with that plaque. But you should go ASAP IMHO b/c I think sometimes the doctors may want to wait a year to see how you develop, although this might not be the case for you as your curve sounds like enough that it clearly isn't new.  Just make sure you go to a good doctor who has something on the hospital's website that says he specializes in Peyronie's or you'll likely get someone who doesn't appear to be as informed as you might be after doing your research.

Best of luck, and about the Vitamin E stuff, the results are usually minimal, but definitely you want more than 100IU, and you want a full spectrum E 400 IU of it. I use some stuff from Primordial Performance. It's a powder. I don't know if it's any good or not. They seem to have a good rep, but I think part of that is from fake posts on message board forums from supposed users. Still I use a lot of their stuff, and I don't plan to switch anytime soon.

Thanks for the reply Jackisback. I might have spoken a little too soon about the ED, as i've noticed in the last few months that after i stop any physical stimulation to my member, the erection loses its full rigidity and goes semi-erect within 15 seconds (is this normal? how long is it supposed to stay fully erect for when stimulation ceases? Because i'm sure that a few years ago, i know that when i'd finish stimulation the full erection maintained for at least a good few minutes). This might be Peyronies Disease related or it could be psychological as i've been worrying about Peyronies Disease. I've also noticed some mild or dull "aches" after masturbation in the last week or so. I'm going to monitor this more closely.

With the vit E, i think you misread as I said 1000IU  (not 100). I'm not sure if this is the high gamma version (not sure what that even is?) but it says there are d-alpha-Tocopherol 670 mg per tablet ? That seems to be the highest dose without prescription i can get, you think thats good enough?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: beginer on August 18, 2008, 10:02:48 AM
I live in Louisville KY 2 hrs south of Indinapolis, and I am heading to NYC for a couple months on Sept 3, any help in this area would be greatly appreciated, lwillisjr has given me a website with a list of doctors who claim to specialize in the area so I'm going to start there.

Thanks all,
Billy
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on August 18, 2008, 12:16:58 PM
Beginer
If you want to stay closer to home I can give you the name of a Male Sexual Function Specialist at Vanderbilt in Nashville. I was impressed with him after going to at least 4 local urologist.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on August 18, 2008, 05:25:30 PM
Wayne999,
You would be surprised at how much your brain is a factor in all of this. I suspect it may be more mental. I don't Peyronie's affects your "time of stimulation". I had no problem achieving erections, but it was taking more to make it happen. I didn't think it was mental but my wife had to bring me down to reality. I was obsessing over the Peyronie's curvature, even to the point of hesitation because of the bend. It can get to be where it is all you think of. Do pursue seeing a qualified professional as recommended. The rest will sort itself out.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackisback on August 18, 2008, 10:06:37 PM
Wayne, I'm not sure what you mean by prescription. You can always take as much Vitamin E as you want. I recommend you using search though, I'm not the best for that, but I'm trying this Primordial Performance stuff. As for the erections, I think you should get a pump. My erections feel completely different now and I'm not sure why, but more tight and rigid. But I didn't use the VED all weekend, and had a crazy weekend, and now my VED isn't working right (i think i have to buy a new restrictor ring). I'm a little worried I might be going back to my loose erections myself. At least I know I can get back to where I need to be though.
Title: Re: How Important is Doppler ???
Post by: wayne999 on August 22, 2008, 08:10:01 PM
Is an ultrasound aimed at picking up any Peyronies Disease good enough by itself or should a Doppler also be used? (i think dopper is a special form of ultrasound? so should one get both done?)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: alcohen on August 22, 2008, 11:45:15 PM
Someone can correct me if I am wrong, but I believe that a Doppler test is the best to do?  That is what I am having done soon by Dr. Carson at UNC Hospital.  It involves the pricking of your penis to achieve an erection and then observation.  My scars can only be felt and become visible only when I have an erection.  I assume that an ultrasound would be able to pick these up but a doppler gives the doctors more of an idea of exactly what you have going on...

Again, please correct me if I am wrong.  I am learning as I go along here. 
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: bodoo2u on August 23, 2008, 01:59:52 AM
What do you mean by "pricking" the penis?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on August 23, 2008, 07:42:36 AM
In a Doppler, you go into the exam room and disrobe from the waist down. They give you one of those nice hospital gowns (ha).
You lay on the table and they put your feet in strips. The Dr. comes in and does an exam then he injects PGE1 into your penis, yes you can feel it but just barely.
My doctor covered me and put my hand on my penis. He said to work it like biscuit dough and he would be back in a few minutes.
I understand some men get a full erection but most just a partial erection. I had a partial erection and the doctor tool the Doppler wand, lubed with KY, and went all over my penis.
I could not see the screen but heard this gushing noise similar to a pulse beat.
Dr. said that noise meant I had Venous Leakage.
After he reviewed the photos he told me I had severe leakage and started me on Tri-mix.
After a couple of months with a run around about where to get trimix except from his office I went to another Urologist.
Dr. C gave me a script for trimin and told me the local compounding pharmacy that could fill it. After several attempts going all the way up to 100 units I was getting no results.
Dr. C put me on a VED and we scheduled implant. Because of health reasons, a failed implant attempt last October,  An accident 7/23, I have rescheduled the implant to 10/30/08.
The trimix caused so much corporal fibrosis that I have to go to Vanderbilt in Nashville to a Male Sexual Function Specialist that does over 100 of these a year.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on August 23, 2008, 08:22:27 AM
Note to all:

The previous post by jackp is one of the leading objections by us "older guys" in the Peyronies Disease business. Penile injections from my experience and that of others has caused more damage to men's penises than any other "treatment" for Peyronies Disease or ED. It causes havoc in so many ways that doctors simply just don't know about or don't care about for their patients.

IMHO, I would run from penile injections of any kind like they were going to give me the Bubonic Plague!! So, guys be forewarned that these injections simply just do not merit their use. There are other much better ways of treating Peyronies Disease and ED.

The above is just the opinion of an old man whose has been around the horn with Peyronies Disease, ED and several other male health issues.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on August 23, 2008, 08:31:00 AM
Levine generally has first time patients have a "Full color duplex" ultrasound. I don't know if this is what others of you have had or not. I does give an indication of blood flow put also reveals pictures of any plaque, both calcified and non-calcified. Levine showed me my pictures, although like X-rays, I can't read the fine details. He showed me where the plaque was and there were some white "specks" that he said were the beginnings of calcification.

As jackp stated you strip from the waist down. I don't even remember being given a gown, more of a paper sheet to lay over yourself like in the doctor's exam room. Whatever modesty you have is soon gone with this whole ordeal. The ultrasound is first done while flaccid, I was asked to hold the head of the penis still while the tech typed into the machine with one hand and was using the wand with the other.

Then yes, you are given an injection in the side, midway of the penis to induce an erection. I was told ahead of time that the erection would need to be "full", and that a second injection would be given if necessary. One injection did the trick, then the ultrasound repeated, again with me holding the glans still while the tech used the wand again.

Then I was told to simulate myself for a few minutes (but not climax) to achieve the fullest erection possible. At this point several measuring devices were bought out (tape measure, protractor, etc.) and several measurements to record length, girth, angle of bend, etc.

Then they finally leave you alone for 10 minutes for the medication to subside, erection goes away. Then you can rejoin in the waiting room and share this story with you friends over lunch. In my case it was my wife. We had lunch at the hospital as my appt with Levine with the ultrasound results was later that afternoon.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: alcohen on August 23, 2008, 10:42:07 AM
Thanks for the more knowledgable replies.  I did not know what to expect and am getting a little nervous...  At Dr. Carson's office, I was told by the receptionist after being seen by Dr. Carson that they only do these doppler tests 3 times a year and that I would have to wait until December to have mine...  That was a little upsetting for me to have to wait that long so I walked back and waited to talk to Dr. Carson when he finished with his next patient.  He told me that it would hopefully be much sooner than that. 

I just hate playing the waiting game to get REAL treatment started.  I am on Trental and the pain and on fire feeling is mind numbing.  At work I had an associate who had been on vacation for several months come back last night and ask me how things were going with my girlfriend.  He had always seen me acting a little down and lonely at work but had seen an instant turnaround when I started dating my girlfriend as I was truly in heaven in every way.  When I tried to think about how to answer his question everything began to come back to me as I thought about my happiness turning to sheer terror and pain...  I just broke down and started crying.  I try not to think about things but my pain is getting worse and worse. 

Thanks for the help everyone here has given me.  This is so tough.
Title: Re: Developmental drugs and treatments - (Still in trial or not approved for Peyronies Disease)
Post by: jav on August 23, 2008, 12:20:35 PM
Hello George: May you tell me what have you discovered for stoping the glycation process?. Sorry for my english. I write from Spain.
Title: Re: Developmental drugs and treatments - (Still in trial or not approved for Peyronies Disease)
Post by: Hawk on August 23, 2008, 12:31:06 PM
Jav,

Welcome to the forum and thanks for posting.  You English was 100% so no apology needed.  We are here to help, not to judge your foreign language skills ;)


Hawk
Title: Re: Developmental drugs and treatments - (Still in trial or not approved for Peyronies Disease)
Post by: jav on August 23, 2008, 03:05:40 PM
Thanks very much, Hawk-
Title: Re: Developmental drugs and treatments - (Still in trial or not approved for Peyronies Disease)
Post by: George999 on August 23, 2008, 04:51:43 PM
jav,  If you do a Google search on the web for "glycation" you will find a lot of information.  This is one of the best:  Background: Glycation and Crosslinking Proteins (http://www.legendarypharma.com/glycation.html). The really big thing for slowing down glycation is eliminating refined carbs and heavy starches from your diet in order to lower blood sugar levels.  Other things you can do are specifically to attack inflammation in every way possible.  The best prescription drug for doing that is Pentoxifylline.  Areas of glycated tissue generate cytokines like TGF-beta-1 which causes inflammation which in turn, drives more glycation.  Pentoxifylline interferes with this process by blocking glycation.  This study:  Treatment of Peyronie's disease with oral pentoxifylline (http://www.nature.com/ncpuro/journal/v3/n2/full/ncpuro0409.html) describes how Pentoxifylline has been successfully used to reverse Peyronies damage.  If you can show this to a Urologist and convince him to prescribe Pentoxifylline for you, it will be helpful in interrupting the cycle of glycation that drives Peyronies.  Additionally, I also believe use of the VED interferes with the glycation process in Peyronies disease.  You may want to consider making use of that approach as well.  But certainly diet is very important.  You can find a lot of useful diet information on The Real Age website (http://www.realage.com).  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jackp on August 23, 2008, 06:45:18 PM
Old Man
If I had only know then what I know now. I am against penile injections after what happend to me. Under the right conditions I might do it for a Doppler.
When I was at Vanderbilt for my pre op I asked do we need another Doppler? Dr. Milam said no I see all I need to know.
I used PGE1 (Edex) and then trimix for about a year trying for an erection. The only thing I got out of it was Corporal Fibrosis that made me 100% impotent. Without the VED I could not function at all.
I understand there are other ways to detect Venous Leakage without doing a Doppler.
Stay Away From Shots In The Penis!!! IMHO
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on August 23, 2008, 07:29:59 PM
From personal experience I can tell you that the injections to cause an erection are quite different from the Verapamil injections. The VI injections are larger needles, larger dosages, etc. The needles for causing an erection are quite small, but still not pleasant.   :-[

We still need to be clear that we each react in different ways, some people are more susceptible to scarring to others. I agree that injections of any type are a risk. But while some of had bad experiences, clearly there are examples of those who have been helped by these treatments.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: wayne999 on August 23, 2008, 09:29:38 PM
is jackp suggesting that even the smaller needles/injections they give you for producing an erection in the clinic is not safe?

also, to properly assess for Peyronies Disease is an ultrasound required to be performed both in the flaccid and erect states? I think mine will only be in the flaccid state.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on August 23, 2008, 10:28:05 PM
wayne999:

I think that jackp is trying to tell us that yes, penile injections of any kind are a risk. Even the smaller needles used for erections can and will cause further damage to one's penis. There are numerous ones of us on this forum who have had to learn the hard (no pun intended) way that the injections are a risk. So, as I have said before, heed our warnings, weigh out the facts before submitting to penile injections.

Again, this is my opinion based on many testimonies of guys on and off this forum. If we only knew about all the cases where damage has been done!!!

Old Man
Title: Re: Wayne - Injections
Post by: Hawk on August 23, 2008, 10:42:19 PM
Wayne,

In fairness and objectivity you should know that many if not most Uro's maintain injections and especially a single injection will do no harm.

Having said that, I am with Old Man and JackP on this.  In fact I believe that Bimix injections are the direct cause or trigger for my Peyronies Disease.  I did inject about 80 times in a nine month period however.  If I needed a single injection for a good test I may go along with that.  Immediately after the injection you are to apply direct pressure with the thumb and forefinger to prevent bleeding.  This not to control the speck of blood that may or may not come to the surface but to prevent any small bleeding in the tissue.  Raw blood is a known irritant that results in wound scaring.

You are armed with the opinions, now you have to make your own call.
Title: Re: Developmental drugs and treatments - (Still in trial or not approved for Peyronies Disease)
Post by: jav on August 24, 2008, 06:24:17 AM
George:

Thank's for your answer. A last question, what's VED?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on August 24, 2008, 04:24:59 PM
wayne999
I would not go as far as saying that an injection by a doctor would be unsafe.
As for a Doppler for Peyronies my experience is not for Peyronies but to confirm Venous Leakage.
In understand that some doctors are not doing Doppler for Venous Leakage but relying on symptoms and history.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ohjb1 on August 24, 2008, 04:55:45 PM
Based on my experience I would also be very cautious about penile injections.

But for those of you are opposed to these injections, would you then refuse any treatment by Xiaflex since it is administered by needle?
Title: Re: Developmental drugs and treatments - (Still in trial or not approved for Peyronies Disease)
Post by: Hawk on August 24, 2008, 05:15:35 PM
Jav,

I direct you to our incomplete glossary on our website http://www.peyroniessociety.org/glossary.htm

I also encourage you to read the child board about 3' down from the top of our forum's topic index page https://www.peyroniesforum.net/index.php/board,2.0.html   That area is especially for new members.  It will bring you up to speed with much of the conversation on the forum.


I will likely move these posts since they are in the "Developmental Drugs" topic and they are not about developmental drugs.

Regards

Hawk
Title: Re: The danger of Xialeflex/Needles
Post by: Hawk on August 24, 2008, 05:33:46 PM
One would  I would have to assume that a drug that is demonstrated to break down established collagen scar tissue, would also prevent the development of such scar tissue directly in the needle track that delivered the drug.
Title: Re: The danger of Xialeflex/Needles
Post by: George999 on August 24, 2008, 05:55:30 PM
Quote from: Hawk on August 24, 2008, 05:33:46 PM
One would  I would have to assume that a drug that is demonstrated to break down established collagen scar tissue, would also prevent the development of such scar tissue directly in the needle track that delivered the drug.

Hawk,  You may be onto something here.  This is one concern that I have had regarding Xiaflex.  But if the Xiaflex has a residual effect, which is probably a reasonable assumption, it may turn out to be a real cracker jack solution to Peyronie's.  Lets all hope that it indeed works out that way as these trials move forward.  With all of the research dollars being thrown at fibrosis these days, somewhere there is likely to be a breakthrough before long.  Perhaps this will be it.  Wouldn't that be wonderful?  :D
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ohjb1 on August 24, 2008, 06:02:39 PM
Hawk - excellent point. Thanks.

I am debating whether or not to be part of the Xiaflex trial. My experience with Verapamil was so negative that I can not decide if I want to subject myself to any more penile injections.
Title: Re: Developmental drugs and treatments - (Still in trial or not approved for Peyronies Disease)
Post by: jav on August 25, 2008, 10:47:53 AM
Thanks very much indeed, Hawk.
Title: Re: Developmental drugs and treatments - (Still in trial or not approved for Peyronies Disease)
Post by: wayne999 on August 25, 2008, 09:38:24 PM
regarding the injections for the doppler scans:

Can a proper ultrasound or doppler be carried out on the flaccid penis? Does it NEED to be erect in order to fully assess the nature of the plaques, calcification etc ?

I'm confused about whether or not to reject the injection in order to induce an erection for any scan (if that issue came up).
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on August 25, 2008, 10:10:45 PM
My ultrasound was done both flaccid and erect. My understanding is that the plaque shows up on both. So the answer would be yes that the plaque could be identified with an ultrasound while flaccid. The other thing the color duplex ultrasound does is measure blood flow. And they ususally want to make sure you have good blood flow when erect to see if you have other issues going on.

I don't believe that the one injection to cause the erection will cause any problem. There are those on here who will disagree with me, but they also state that it was repeated injections over a period of time. These injections ARE NOT the same as the Verapamil injections that others are also opposed to.

IMHO, I would get the full scan. Both flaccid and erect and make sure you are getting a complete analysis.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newbie150 on August 26, 2008, 10:53:31 AM
Hi guys,

I'm sorry to just make a post asking questions, but this forum is an absolute labarynth and I don't know where to start!

Background:

Current situation:

Questions:

Thank you.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: alcohen on August 26, 2008, 03:12:59 PM
I am so sorry this has happened.  From what I have read, it does sound to me like it is the makings of Peyronie's, but you must go see a urologist.  What area of the country are you in?  If you let me know, I can see if I can find one that would be good for you.  Not just any urologist will do.  You need to go to one who is familiar with Peyronie's disease.  The most important thing is to begin some form of treatment as early as possible.  Around here the VED seems to be considered one of the most beneficial forms of treatment.  That along with getting on Pentox if possible.  I have to run to class right now so sorry for the very short response.  We have many users here who are very knowledgable and should post here shortly with much better responses. 
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: beginer on August 26, 2008, 04:42:07 PM
Does anyone know how to obtain pentox without a prescription. Secondly, if a prescription is needed what argument can I present to a uro or physian to have the prescribe that?

Thanks
Beginer
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on August 26, 2008, 04:42:20 PM
newbie150:

Welcome to the forum and as alcohen says, there is a world of knowedge about Peyronies Disease, ED and other men's health problems on this forum.

I might suggest that you should start by going to the Childs Board section of the main forum and start reading the topics there in order to get yourself oriented with the forum and Peyronies Disease. The Childs Board section is listed just under the Main forum link about the middle of the Home Page. I think it is a sub thread link so look there.

Also, there is a thread topic listed on the main forum page that states it should be read by all new comers to the forum. It lays down the ground rules for posting and a lot of just plain good information about the forum.

Let us know should you need help with anything at any time. We are all here to help each other through the trying times of learning that we have Peyronies Disease and its devastating results.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newbie150 on August 26, 2008, 06:32:26 PM
I am in SA, Australia. I would be prepared to travel to Sydney (NSW) or Melbourne (VIC) if necessary. If anyone knows of good doctors in this country, that would be great.

Thanks.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on August 26, 2008, 07:25:21 PM
newbie - go to Dr David Malouf at St George Hospital in Sydney - he will prescribe pentox ( trental 400 ) for you......
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newbie150 on August 26, 2008, 08:04:53 PM
Thank you, I will look into it.

Just to clarify - my full erection looks 100% normal. However, when I am getting my penis aroused, it is as if there is an invisible rope tied around my penis, mid-shaft. Blood DOES get past this point, it just seems to be blocked a bit. Once enough stimulation is provided, the rest of my penis fills 100%. The withdrawn, firm-flacid-shaft, thing I have been experiencing goes away when I urinate or retract my foreskin. I can also make it go away when I "push out", as if I was about to urinate. This makes the shaft go soft, like it should be.

I have not heard anyone speak of these phenomena, in the context of Peyronie's disease. Is this a common sign? Also, how does one pronouce Peyronie's? Is it pay-row-knees?

I am due to see a urologist at the end of the week. Can someone give me a list of questions to ask (diagnosis & treatment options)? This is what I have so far:

Diagnosis:

Treatment
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on August 26, 2008, 09:37:05 PM
newbie150:

Looks like you have done your homework with questions for the uro. Keep browsing through the posts here and you may come up with some other questions. Be sure to write down all those things you want to ask so that you won't forget any when talking with the doctor. I tend to lose my train of thought when talking with doctors sometimes and when I leave the office remember many questions I wanted to ask.

Yes, we pronounce Peyronies as pay-row-knees like you said. It is a French word named for the famous French physician Peyronies who apparently had a very bad case of the disease and did much research on it. However, it seems he never was able to come up with a solution for his case.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newbie150 on August 26, 2008, 11:01:37 PM
Thank you for your reply. If anyone else can suggest some topics to discuss, that would be great. One more question... have any of the following supplements recieved attention?

- Zinc (absorb calcium) ?
- Fish oil (reduce inflamation) ?
- Vitamin C (general healing) ?

Is it a good idea to stop eating a lot of calcium?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on August 26, 2008, 11:08:37 PM
try larginine and acetyl l carnitine and pentox!!!!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newbie150 on August 28, 2008, 03:29:45 AM
Ok let me recap where I am...

So the hard-flacid-penis thing started 4 days ago. I couldn't get a full errection that night or the next morning - my penis got very hard, but was very small and had a bit of an hourglass look on the left side. Later in the 2nd day, I went to my GFs house and got a full erection and came from oral sex. Everything looked normal.

When achieved, my FULL erections have looked 100% normal throughout this entire period.

From this point, I've been masturbating 2-3 times a day. The hourglass look that occurred prior to achieving a full erection have gone away almost entirely and my penis is filling up uniformly. However, the slight downward angle in a semi-erect state still persists. In a fully erect state, my penis does the opposite and angles upward (as it always has). The hardness in a flacid state has dissapeared and I am hanging as soft and long as usual.

I'm so confused. Is this Peyronie's or what? In a fully erect state my penis looks normal (curves up a bit, but always has) and I have no plaque. Semi-erect, it turns down a bit, mid-shaft, like it had been for the last 4 months immediately post-trauma.

In the last day or two, my penis has felt very "alive". Basically, as soon as I start masturbating, I feel like I am going to ejaculate. Something between my penis and anus (BC muscle? Prostate?) also feels very stimulated. This stimulated feeling can also occur randomly without an erection. The glans also feels a bit more sensitive. Has anyone experienced this?

I must say also, when I have had erections over the last few days, they have been abnormally massive and strong.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Aldar on August 28, 2008, 11:06:53 AM
Does anyone know of a urologists in or near Louisville, KY that has a good amount of experience with peyronies? I have about 60 listed on my health insurance's web page and I think calling each one to ask about their peyronies experience would be a bit time consuming. Any other resources I can look at to find urologists in my area with Peyronies experience? At $50 per specialist visit, I don't want to go through 15 doctors to find the right one if I can avoid it. Thanks in advance.
Title: Confused about my symptoms
Post by: Davey_873 on August 28, 2008, 04:34:41 PM
I'm pretty sure I have P.D. and have seen a urologist that thinks the same. But.... I'm confused about the fact that I have no hard nodules or plaque that I can feel anywhere in my penis. The urologist seemed perplexed by that too. I first noticed a sharp 90 deg. upward bend in my erection about 4 to 6 months ago. There has been no trauma and I have no pain during erection. I have no problem maintaining an erection. The bend starts about two thirds of the way towards the head and there is a slight reduction in the circumference at that point.

My confusion comes from the fact that there seems to be no scar tissue, nodule, or plaque anywhere in the penis. Is it possible to have P.D. without the plaque?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on August 28, 2008, 05:32:25 PM
Davey_873,
You ask a great question. I spent some time recently searching this forum and I find many mixed answers even by the old timers here. Many feel that if they have a curve at all, that they ahve Peyronie's Disease. But if you look up the technical definition I think you will find that Peyronies Disease is defined by the formation of plaque of some type. The plaque cause the Tunica from expanding in that region and therefore the curve. I think it is important to understand that there are other reasons for curvature as well. So don't just assume you have Peyronie's. So my answer is no you can't have Peronie's without the plaque. But I'm sure others here will disagree.

Now... the good news is that many of the treatments for Peyronie's are good for ANY type of penile curvature. So spend some time browsing the forum and learning about all the different therapies. The key is finding a good uro to work with. Unfortunately they are few and far between in this area.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: LWillisjr on August 28, 2008, 05:40:22 PM
Aldar,
Hopefully someone here can suggest a name for you. In the meantime you might try the "physician finder" on www.peyroniesassociation.org This is a website originally supported by Dr. Levine. And I think he is one of the top uro's in the country who has specialized in Peyronies Disease for 20 years.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newbie150 on August 28, 2008, 09:29:23 PM
I just got back from my urologist.

He said what I have been experiencing is indicative of Peyronies. I showed him photos and he said that there is probably some scarring, which may develop into Peyronies Disease. However, he couldn't find any plaque.

He told me to take ALC and Vitamin E, nothing else. Should I take L-Arginine anyway, before bed? Will this conflict with the ALC? Should I find a doctor who will prescribe Pentox?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on August 28, 2008, 09:34:21 PM
Davey:

Yes it is possible to have Peyronies Disease without any normal symptoms of it. During the very early stages which some call the inflammation stage sometimes there are no nodules, plaque or other signs of Peyronies Disease. There seems to be no explanation for this either.

Later in time, those symptoms do appear and cause one to have the regular signs of Peyronies Disease. So as it was suggested in the posts below, I strongly urge you to get busy with some form of therapy now so as to ward off the known symptoms of this horrible mess.

Old Man
Title: Re: Plaque
Post by: Hawk on August 28, 2008, 11:19:59 PM
It could be argued that anyone with Peyronies Disease has plaque but all plaque is not palpable plaque, meaning you cannot necessarily find a defined nodule of plaque that you can feel with your fingers.  Many men with Peyronies Disease do not have palpable plaque.
Title: Re: Newbie
Post by: Hawk on August 28, 2008, 11:28:15 PM
Welcome to the forum.

Now, for starters you name is a poor one since presumably you will not be a newbie for ever.  It is some what confusing since you selected a member designation as a name.  It would be much lake picking moderator or major contributor as a name.  Consider another one.

About your condition.  I say if your erections are fine without evidence of change or deformity then do not obsess over your shape when half erect.  Whether or not you experience your penis feeling "alive", speedy of orgasms, or feelings of stimulation near your anus has nothing to do with Peyronies Disease.
Title: Re: Plaque ...
Post by: George999 on August 28, 2008, 11:36:17 PM
I have come to believe that the only sure way to detect actual thickening (scarring) of the TA is via an ultrasound of the penis.  The "time tested" touchy feely method is far from precise.  Most of what gets felt is actually inflamed swollen tissue which may or may not indicate the presence of actual scar tissue.  But it DOES indicate the presence of a Peyronies process going on.  But many guys have Peyronies plaques that simply cannot be detected by touch, but an ultrasound will reveal them if they are there.  I also believe that this is one reason that some Peyronies patients simply recover spontaneously.  I believe it may be a matter that they had a lot of inflammation that was palpable, but it never really reached the point of developing into actual scarring which would lead to a closed loop process of inflammation -> scarring -> TGF-beta-1 -> inflammation -> scarring -> etc etc etc  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on August 29, 2008, 12:02:14 AM
HAWK - what would be a good idea is to have a petition page that people can sign or join up as a separate website that can go in the 'sponsored links' are on google next to Xiaflex. This way the people in this company know that we are keep for them to pull their fingers out - I would be happy to put some $$ towards this - if every one did this would be a great place to get active online with these drug companies.....at least they know that we are keen and pushing for this.


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: wayne999 on August 30, 2008, 03:52:24 AM
hey all my recently done ultrasound concluded there was no sign of Peyronies Disease and no abnormal soft tissue. This took me by surprise because i can feel little hard things at the point of curvature. These things that I can feel are located on the sides of my member, and the ultrasound was done on the top and bottom - would this pick up EVERYTHING inside the organ or do you specifically need to have the scanner device over the plaques? The radiologist told me that it would pick up everything. I'll have to wait and see what the uro says.
Title: Re: Wayne ...
Post by: George999 on August 30, 2008, 10:53:08 AM
Wayne,  I think what you are hearing is good news.  It DOES NOT mean that you don't have Peyronie's Disease.  It DOES mean that, so far, you have no physiological changes associated with Peyronie's Disease.  What you do likely have is localized inflammation in the TA.  You should treat this as Peyronie's and not wait for scar tissue to form.  That means you should do everything you can to bring the inflammation under control.  Ideally, this would be a prophylactic treatment with Pentoxifylline.  But if that is not possible, for sure you should get going with whatever effective treatment works for you of the ones listed here.  Vitamin E and ALC would be good choices at this point.  Also Mangosteen Juice.  Whatever you do, don't just sit on it.  - George
Title: Re: Wayne ...
Post by: wayne999 on August 30, 2008, 07:30:43 PM
Quote from: George999 on August 30, 2008, 10:53:08 AM
Wayne,  I think what you are hearing is good news.  It DOES NOT mean that you don't have Peyronie's Disease.  It DOES mean that, so far, you have no physiological changes associated with Peyronie's Disease.  What you do likely have is localized inflammation in the TA.  You should treat this as Peyronie's and not wait for scar tissue to form.  That means you should do everything you can to bring the inflammation under control.  Ideally, this would be a prophylactic treatment with Pentoxifylline.  But if that is not possible, for sure you should get going with whatever effective treatment works for you of the ones listed here.  Vitamin E and ALC would be good choices at this point.  Also Mangosteen Juice.  Whatever you do, don't just sit on it.  - George

George:
What intrigues me is I've had this curvature for at least 5 years (so I've unknowingly sat on it for quite some time!), so isn't it extremely unlikely that no plaque/calcification has occured by now, or equivalently, that localized inflammation has been active for such a long period?
Title: Re: Wayne ...
Post by: George999 on August 30, 2008, 10:45:16 PM
Wayne,  I no longer think anything strange regarding Peyronies.  Medical tradition has long held that it is somewhat predictable.  But the more we learn about it, the more confounding it gets.  I've been dealing with it for around four years now and my ultrasound showed very little tissue damage.  Who knows?  Perhaps you have some that didn't show on the ultrasound.  Perhaps the machine they used wasn't so sensitive.  Perhaps another examiner might be able to identify something.  But I do doubt if you have a LOT of damage because that most likely would have shown.  My experience has been that inflammation alone can cause significant deformity.  And thats good news because it is a whole lot easier (though no small feat) to resolve inflammation than it is to reverse tissue damage itself.  -  George
Title: Re: Wayne ...
Post by: wayne999 on August 31, 2008, 03:51:01 AM
I just had a look at some Brazillian studies online and they also noted that sometimes ultrasounds don't detect anything yet the patients can easily feel a palpable plaque, so maybe the ultrasound wasn't very revealing. I had one image that looked a bit suspicious to me, but apparently it was fine. I suppose just because it's very bright white doesn't automatically mean it's plaque...i mean i'm no expert in this area, all i can do is trust the opinions of those that are.
http://img411.imageshack.us/img411/8500/93318376qe5.jpg
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newbie150 on August 31, 2008, 06:45:40 AM
Ok, I have done a lot of "testing" and have absolutely zero curving when fully erect, except when I get a hard-on in a position that bends my penis. I do have a bit of a downward bend, mid-shaft, when semi erect. Is it possible to have trauma-induced curving without developing full-blown Peyronie's?

Regardless, I am going to treat this as if I did have Peyronie's. This is my plan:

For 3 months:
- L-arginine (2 x 3gm)
- Aecetyl-l-cartinine (2 x 1gm)
- Vitamin e (1 x 500IU)
- Occasional fish oil capsules
- Aim to achieve 2 full erections during the daytime, per day
- Sex/masturbation 2-3 times per week MAX, with at least one day inbetween, to reduce extra trauma. Normally I would have sex ~3-4 times when I see my girlfriend (3 times per week) and masturbate once every other day. It's too much... I know... We're addicts. :(

I will then stop taking all supplements for 2 weeks. In the second week, I will avoid getting any erections at all, to simulate the conditions under which I originally had problems. If the semi-erect curving has not gone COMPLETELY, I will jump into Pentox and get an ultrasound.

If at any point in this 3 months things get noticeably worse, I will jump straight on the Pentox etc.

Does this sound like a good plan? Is 3 months long enough to see results? Is 2 erections per day enough or too much? The way I look at it, if I have "localised inflamation" and not full blown Peyronie's, it must be better to avoid additional trauma via erections/sex. On the other hand, if I do have full blown Peyronie's, stretching out the plaques would be ideal and more erections would be beneficial. What does everyone think I should do?
Title: Re: Wayne - Ultrasound
Post by: Hawk on August 31, 2008, 04:22:53 PM
Wayne, in reference to the image on the link, I would be proud to have an ultrasound film that said "long penis" on it  ;D

Maybe that was the angle.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: tommarkey on August 31, 2008, 06:13:56 PM
Wayne, where did you find these brazilian studies?

Well, have a lot of time that i don't post here and i want to say somethings...

- Now I'm in my fourth month with the propoleum treatment (Do you remember the alternative propoleum treatment, from Cuba?)... I did not see any result yet (the treatment has six months). However, i used propoleum made here in Brazil, not the cuban formula.

- I find something on the net that i want to share with you

At the end of the year passed (2007) a research started here in Brazil that has as objective to create a new surgical technique for the Peyronies Disease. An institute was created (called SISPE, without traslation to english). It involves 12 specialized centers in urology. The technique consists to implant a swine material called "surgisis biodesign", developed by american scientists ten years ago. This material reconstructs the human tissue becoming incorporated in it. After one year is not possible to distinguish the surgical area from the normal tissue.
63 surgeries will be made. The results will be avaible in this year.

(I tried to compact the information of the article...Sorry for my bad english.) If someone wants to read, here are the links:

http://blog.cbes.edu.br/2007/09/13/doenca-de-peyronie-e-tema-de-simposio-na-bahia/
http://www.portalsaude.org/site_v01/index2.php?option=com_content&do_pdf=1&id=73

I recommend you to use Yahoo Babel Fish or Altavista Babel Fish to translate the portuguese for english (BabelFish helps me to talk with you)

Title: Re: New Surgery - Not really
Post by: Hawk on September 01, 2008, 12:00:47 AM
That surgery, at least that scaffolding of surgisis that is replaced by actual tunica tissue is done in the U.S.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: wayne999 on September 01, 2008, 08:45:50 PM
tommarkey: I found the Brazillian studies at http://www.scielo.br/scielo.php?pid=S1677-55382004000300004&script=sci_arttext
and the part i was originally talking about was "The ultrasound did not detect five plaques that remained easily palpable even by the patients. On the other hand, in seven patients with subjective and palpation improvements the ultrasonographic findings did not change".

Hawk: I somehow don't think that the white object there was indicating the angle, which is why i am suspicious.

Also i'm not sure what the difference between anterior aspect and dorsal aspect is for an ultrasound? Dorsal would mean just on the top (ventral on the bottom), but anterior meaning from the front ?? Not sure how that works.
Title: Re: Palping Plaque ...
Post by: George999 on September 01, 2008, 10:00:45 PM
Anyone wanting to further explore this area can have a little fun by feeling the plaque, then applying some aloe from one of the oral aloe soft gel products and then, after a few minutes re-checking.  I found this to be very revealing.  Quite honestly, I don't really know of what use it is, but what I felt after is definitely totally different than what I felt before.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on September 01, 2008, 10:11:16 PM
I don't think doing that with Aloe made any difference for me, George. It underscores the differences we ahve between us all n how these lesions are manifested.

Guys - don't waste time over "palpable or non-palpable" - it is not worth the mental effort. The simple fact is that the human finger is not as sensitive as other modalities, including visual inspection, for noting changes the penis. Only in the last five years have I been able to palpate anything, but for thirty years I have had a gradual change in the shape of the penis that led to curvature.

I think that the implications are actually important though. If you have palpable, enlarged, firm and painful "plaque, then it is likely in an acute (more or less acute) inflammatory phase, and might be quite amenable to medications including many George recommends. If you have a hardened palpable nodular density, without pain, that is in the wall of the tunica, then it is probably "mature" and no longer in an acute inflammatory phase. In that case, things like Verapamil, surgery or Pentox might make more sense. There are other variations on the theme. I have "dents"  - IOW, I don't really make palpable plaque, but instead have small areas of density that do not stretch as well as they should, and may or may not be calcified, but are certainly abnormal in terms of elastin and collagen.

I think we need to approach how we think about Peyronies Disease differently, and start to figure out how to classify it by 'type', and not stick with plaque or no plaque as a way of diagnosis.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: tommarkey on September 02, 2008, 12:52:50 PM
Hawk, can you explain me better this surgery?

Here in Brazil one doctor in São Paulo does a surgery that removes the scar and substitutes for one membrane that haves cardio tissue. This surgery does not short the penis and the tunica grows again on this tissue.
Technical, this surgery leaves the penis how it was before Peyronies Disease. (I don't know if is true, if thus it was, Peyronies Disease already would have a definitive solution)
I did not do this surgery because my plaque is on a place that don't allows (dorsaly and inferiorly)

I don't know if this in USA is something similar...



Thank you, Wayne
This university that makes the article (UNIFESP) is the best school of medicine in Brazil, with the USP.
This article brings me an another hope... Someone in the forum already tried the Extra Corporal Shockwave Therapy?

These informations in researches about Peyronies Disease are very confused to me... I already read that the ECST does not have sucess in treatment of peyronie...

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on September 02, 2008, 07:01:58 PM
Tim,
You make a very good point   :)

This topic is too coincidental though. I had a follow up with my Uro today and we had almost the same discussion. Not necessarily palpable vs. non-palpable......  but rather for those who DO HAVE palpable plaque AND where this plaque may have calcified. He feels surgery may be the only option for these individuals and that other therapies may not be beneficial as they don't "break up" or soften the calcified plaque. I think this is important to understand for those who may fall into that category on this forum.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on September 02, 2008, 09:09:30 PM
tommarkey
I would very weary of this surgery. I would talk to at least 10 people he had used this procedure on.
I have a peyronies scar on top of my penis that is about 3/4 inch wide and one inch long. This scar keep the penis from stretching to the pre peyronies length.
The best doctor at Vanderbilt confirmed this and said leave it alone.
Jackp
Title: Looking for a bit of help...
Post by: John Rambo on September 05, 2008, 08:36:50 PM
Hey guys, I was gonna post this in the history section, but I wanted replies and advice so I posted it here.

Age - 23

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - 17

Very First Symptoms - I had been doing a lot of drugs around this time. Specifically methamphetamine (A powerful vasoconstrictor) and ecstasy. My diet and exercise habits were terrible, as were my sleeping patterns. One night on a large dose of speed I had rough sex for hours. My penis was rough and chafing for a few days after but I thought nothing of it.

Several months later I noticed when erect my penis no longer pointed straight, it was curved upwards. I had diminished rigidity. My erections were painful, particularly when under my clothes.


My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - The curve still continues to this day, but the pain has subsided for the most part. The only treatments I have used are diet and exercise, Vitamin E, Arginine (Sann Vasoflow) and fish oil. I think these to a large extent have helped with the pain, as well as increasing hardness. However the curve is still prominent. Sex is still possible, however I am limited to missionary position, and I have become timid during intercourse (psychological).


Where I am today, future plans - I've never been to a urologist, and I was hoping someone on this forum could recommend one in the Toronto, Ontario area. Any other comments or suggestions would be helpful.

And please no one lecture me on drug use/abuse... I am now well aware of the consequences. I don't do drugs, drink, or smoke anymore, and live a very healthy lifestyle.
Title: Re: Palping Plaque ...
Post by: George999 on September 05, 2008, 09:23:15 PM
Quote from: Tim468 on September 01, 2008, 10:11:16 PMThe simple fact is that the human finger is not as sensitive as other modalities, including visual inspection, for noting changes the penis.

Tim,  My own personal opinion on this is that ultrasound gets pretty close to the gold standard in determining what is actually there, since it can pretty accurately access tissue density, which certainly the finger can't.  Everything else is pretty subjective by comparison.  We know there is something there, but we don't know what.  Its like the difference between a tumor and a cyst.  They can be pretty difficult to tell apart.  Both can be felt and both can cause tissue distortion.  One is benign and the other is deadly.  Of course, in the case of Peyronies it is not a life or death thing.  But I am ever so glad I had the ultrasound, because now, finally, I know what I am actually dealing with.  And I really suspect that a lot of guys with really nasty Peyronies may not actually have a whole lot of tissue density going on and may actually be really responsive to Pentox in the right setting.  After all, Pentox has shown itself effective against even calcification in at least one well documented case.  The trick is to provide it with an environment amenable to its being effective.  I know some will find that a controversial statement, so go ahead, flame me, I don't care.  I just hope that someone will profit from digging deeper into what drives this disease.  - George
Title: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jakesnake on September 07, 2008, 04:50:45 PM
I have had something that concerns me about this disease and was wondering if anyone else has experienced the same thing. When I have an erection near the base of my penis is an indentation, at the point of this indentation my penis can bend to the left, right and towards my belly. When I touch it I can  make it bend to the right at 180 degrees and touch my groin with the head of my penis. It bends almost 90 degrees to the left and I can  make it touch my belly when I bend it inward. I am at a loss as to why this happens and I now know why I cannot insert it when I try to have intercourse. It just bends too easily. The weird thing is it is not painful at all and bends easily. It's almost as if it was made of rubber. I am very concerned that I will never have intercourse again because of this and I'm depressed about it. 

Has or does this happen to anyone here?
Title: Re: Jakesnake - Hinge Effect
Post by: Hawk on September 07, 2008, 05:18:28 PM
Jake that is called the hinge effect and is not uncommon with Peyronies Disease.  I think a lay explanation is that the scar tissue prevents expansion of this area and therefore it is as if you have an erect penis with a flaccid base.  Some of the effect may be from the weakness of shape.  A cylinder is stronger than a dented or deformed cylinder.  Think of how an empty soft drink can can support a lot of weight until you dent the shape.  When you do, it easily buckles under a light load.  Even though the same amount of metal in in the structure, the shape determines how much it will support.
Title: Re: Jakesnake - Hinge Effect
Post by: jakesnake on September 07, 2008, 08:31:16 PM
Quote from: Hawk on September 07, 2008, 05:18:28 PM
Jake that is called the hinge effect and is not uncommon with Peyronies Disease.  I think a lay explanation is that the scar tissue prevents expansion of this area and therefore it is as if you have an erect penis with a flaccid base.  Some of the effect may be from the weakness of shape.  A cylinder is stronger than a dented or deformed cylinder.  Think of how an empty soft drink can can support a lot of weight until you dent the shape.  When you do, it easily buckles under a light load.  Even though the same amount of metal in in the structure, the shape determines how much it will support.

Thanks Hawk...

Do you know if the is any hope for curing this "hinge effect" condition?
Title: Re: Hinge effect ...
Post by: George999 on September 08, 2008, 10:29:04 AM
I would add to Hawk's explanation something that I have been harping on lately.  That is that the problem may NOT be actual scar tissue, but perhaps simply localized stubborn inflammation.  If I were Jake, I would try to get going on ALC and, if possible, Pentoxifylline right away and try to get rid of the hinge.  I think there could be a good chance that this would clear up the problem.  - George
Title: Nocturnal Erection with Pain
Post by: AZHenry on September 09, 2008, 08:37:38 AM
Peyronie's for 1 year.  Curvature upward almost 90 degrees.  I can get erections and cum with masturbation. NO intercourse due to pain and curvature. 60 yrs old. Uro says nothing can be done so I haven't done any treatments, devices or surgery.  Just waiting.  I am OK with my situation but am worried about not being able to pee if it gets worse.  I don't care about sex function only pissing properly and getting a good night's sleep.

Problem: I am getting very painful nocturnal erections that get me up 3 or 4 times a night.  First 4 hours of sleep are fine but then every 60 or 90 minutes afterward I wake up with very, very hard, painful erection.  My lower stomach muscles and groin muscles are sore, I assume from the erection prior to my waking.  Once I wait for a minute or two, I can piss when the erection subsides. Lately though, the erection is not subsiding and I can't pee for 3-4 minutes ...... while my penis is still with erection pain.  Eventually, my penis gets slightly softer and I am able to pee.  But then the almost hard penis stays hard for 10-15 minutes more and I have to concentrate on some problem I have to get my mind off my penis.  I know most of you are concerned with getting an erection but I am the exact opposite.  They are too painful to have IF I am not masturbating or getting oral from my wife.  I want to stop the nocturnal erections so I can get some sleep.  Lack of sleep will affect my total well-being.

Has anyone heard of this problem and have any suggestions on how NOT to get an erection at night?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: nemo on September 09, 2008, 02:11:09 PM
Henry, check out the oral medications forum ... many guys have luck with Acetyl L-Carnitine relieving Peyronie's pain ... it's an over the counter supplement. 

Getting a prescription for Pentoxifilline (Trental, Pentox, etc.) should be in order, though you may have a tough time finding a doc who will prescribe it for Peyronies Disease.  It works on both addressing scar tissue and pain, to some degree. 

Even with the pain this is causing, I can almost promise you, you're better of getting nocturnals than not getting them.  The body is trying to get blood and oxygen in there, which ultimately, can only work to your benifit healing the damage from Peyronies Disease. 

The only thing I can think you might want to try is taking an anti-histamine like Tylenol PM before you go to sleep ... often anti-histamines work against erections.  Might give it a try and see if it helps, but I'd be reluctant to totally shut down your nocturnal activity.

nemo
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on September 09, 2008, 02:17:22 PM
azhenry
IMHO you need another uro, one that is a Male Sexual Function Specialist.
These doctors are hard to find and a general practice urologist does not have the skills.
Let us know what part of the country you live in. Some of us may be able to lead you to this type doctor.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: AZHenry on September 09, 2008, 11:08:31 PM
JackP.
I live in Phoenix, Arizona.  I would appreciate any referrals anyone can give me!!!
Thank You in advance.
AZHenry
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: AZHenry on September 09, 2008, 11:13:49 PM
Nemo,
I know intellectually that having an erection is good for the area but the pain is getting worse.  Thank you for the Tylenol PM suggestion.  Will try it and see if it helps and let you know.
Thanks again,
AZHenry
Title: Re: AZHenry
Post by: Hawk on September 10, 2008, 01:16:19 AM
AZ,

First, it is important that you know that the pain period seldom lasts more than 8-18 months even if you do nothing.  Next, you will not get to the point you can not urinate from Peyronies Disease.

Last of all. please do not color your posts different colors.

Thanks and good luck.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: AZHenry on September 10, 2008, 09:40:38 AM
Hawk,
Thanks for the info on the pain, I hope you are right. 
And the post color is out.
AZHenry
Title: Re: AZ ...
Post by: George999 on September 10, 2008, 10:55:24 AM
AZHenry,  If you are in Phoenix,  My recommendation would be to see a local Urologist in Phoenix as soon as possible and request from that urologist a referral to Dr. Tom Lue in San Francisco.  He can prescribe Pentoxifylline for you which is a safe, easy to take, generic, effective treatment for Peyronies.  Based on your condition, he may have further recommendations for you.  But he is reasonably close to you and is one of the best out there.  I believe you might be able to find someone very good in Los Angeles as well.  But I have seen Lue and his team personally and found them VERY helpful and can personally HIGHLY recommend them.  It was a full day bus trip there and back for me, but it was well worth it.  I feel like it really got my moneys worth.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ohjb1 on September 10, 2008, 11:02:58 AM
George - you mentioned Pentox. Do you find it helpful for pain or curvature correction or both?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on September 10, 2008, 02:14:52 PM
ohjb1

If you search the forum for "Pentox", you will find a wealth of information on how it works and what it does. In brief, it is more likely to help with the curvature than with the pain, but that may be simply because the pain usually goes away fiarly early in the course, and Pentox is started long after the pain has gone away. It may help pain as well.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Snader on September 13, 2008, 12:55:42 PM
Hey guys!

In may I felt this hard cord-like thing on my penis, it's about 1/2 inch long. Sometimes I can feel it, sometimes i feel it like a bb pellet, and sometimes it's not palpable at all. So a few months back I went to my Doctor to get it examined. At that point he couldn't feel anything, so he told me not to worry about it.

So now it's september and I'm beginning to worry. I still have this hard cord-like lumpish thingy, and I'm wondering if it could be peyronie's, I have no bend or deformity, just this hard lump that sometimes is palpable and sometimes it just seems gone.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on September 14, 2008, 12:40:22 PM
Hi Snader,

Sometimes we get vascular problems to the superficial veins on the top or side of the penis, These feel like tubular lumps and may resolve spontaneously. An important thing is do you feel that this lumps is freely movable within the skin or the penis or is it "fixed" to the side of the penis? If it moves, it is not Peyronie's at all. If it is fixed to the side, it is probably deeper from the surface and therefore more likely part of the tunica (the tunica is the part of the penis that feels "hard" when you are erect and creates the tube inside of which the blood is captured).

Tim
Title: Re: The increasing SYSTEMIC role of TGF-beta-1 ...
Post by: George999 on September 15, 2008, 10:30:36 AM
Significant Alterations of Serum Cytokine Levels in Patients With Peyronie's Disease (http://www.urotoday.com/3351/browse_categories/peyronies_disease/significant_alterations_of_serum_cytokine_levels_in_patients_with_peyronies_disease__abstract.html)

Quote from: UroTodayThe significantly elevated serum level of the profibrotic TGF-Beta1 cytokine underscores the effect of cytokines in the pathophysiology of Peyronies Disease. The significantly decreased TNF-alpha serum level suggested no acute immunomodulatory process. Therefore, the relevance for therapeutic administration of TNF-a should be further investigated.Quantification of TGF-Beta1 in serum of Peyronies Disease patients provides a possible diagnostic tool and target for therapy. The data on altered cytokine levels in Peyronies Disease patients also provide a new understanding for etiopathogenesis of Peyronies Disease, which warrants further investigation.

I think this is REALLY an amazing discovery, both as it relates to diagnostic possibilities AND treatment possibilities.  The million dollar question at this point is this:  Is high serum TGF-Beta1 levels CAUSING Peyronies OR is it the other way around?  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on September 15, 2008, 07:48:11 PM
GEORGE999 - if this is the case what can we take to reduce high serum TGF-Beta1??

Cheers
Title: Re: Serum TGF-beta1 ...
Post by: George999 on September 15, 2008, 09:35:08 PM
I'm not sure there is anything at this point that will reduce high levels of serum TGF-beta1.  But for sure you can block at least part of its effect with Pentox.  To me, this study only further validates the use of Pentox.  AND, it actually opens a new door for treatment.  It infers that boosting TNF-Alpha (there is at least one drug that can do that) should be helpful as well.  Considering the fact that we have long assumed inflammation to be the enemy, boosting TNF-Alpha is very counter-intuitive.  This study also causes me to reconsider the use of mangosteen, at least using very much of it for very long, since mangosteen inhibits TNF-Alpha which is NOT what we would want to be doing.  And all of this is not to mention the fact that this discovery opens the door for a simple blood test to diagnose Peyronie's and possibly susceptibility to Peyronie's in the first place.  I think this is a really big discovery.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on September 15, 2008, 10:10:03 PM
GEORGE999 - what about ALC and L Carnisine??
Title: Re: ALC and L Carnosine ...
Post by: George999 on September 15, 2008, 10:21:27 PM
They work by a different mechanism.  They are definitely effective to a degree, but they don't actually affect the cytokines directly like Pentox and Mangosteen.  - George
Title: Vitamins through Food
Post by: Aoli on September 15, 2008, 10:31:27 PM
Edit: Consulting another doctor about my case at the moment.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on September 15, 2008, 11:35:03 PM
GEORGE999 - now i am confused you said:' They work by a different mechanism.  They are definitely effective to a degree, but they don't actually affect the cytokines directly like Pentox and Mangosteen.  - George'

what do they in fact do then?

many thanks...
Title: Re: ALC and Carnosine ...
Post by: George999 on September 16, 2008, 01:21:58 AM
For one thing, they are both powerful antioxidants.  They are able to quench tissue damaging free radicals that are produced by Peyronies.  ACL also protects cellular mitochondria and Carnosine protects the extracellular matrix from the effects of glycation.  All of this is not completely understood.  But ALC has been shown to be effective against Peyronies and L-Carnosine *should* be helpful in dealing with Peyronies.  - George
Title: Re: George - ALC
Post by: Hawk on September 16, 2008, 10:27:10 AM
I agree and have repeatedly recommended ALC, due to this study, personal and anecdotal reports, and the theory behind it.   I would say however that the one very small study falls far short of establishing its effectiveness with Peyronies Disease   It was never duplicated to my knowledge (like many Italian studies).
Title: Re: ALC and L Carnosine ...
Post by: Ralf3 on September 16, 2008, 10:58:12 AM
Quote from: George999 on September 15, 2008, 10:21:27 PM
They work by a different mechanism.  They are definitely effective to a degree, but they don't actually affect the cytokines directly like Pentox and Mangosteen.  - George

And is there anything else, that affects cytokines like Pentox or Mangosteen? Any supplement or combination of supplements ?
Title: Re: George - ALC
Post by: George999 on September 16, 2008, 11:28:38 AM
Quote from: Hawk on September 16, 2008, 10:27:10 AM
I agree and have repeatedly recommended ALC, due to this study, personal and anecdotal reports, and the theory behind it.   I would say however that the one very small study falls far short of establishing its effectiveness with Peyronies Disease   It was never duplicated to my knowledge (like many Italian studies).


Hawk, how many studies on anything pertaining to Peyronies have ever been duplicated?  The bottom line is that there is not much real evidence out there backing ANY of the array of treatment approaches.  Therefore, we are pretty much stuck with something is better than nothing.  - George
Title: Re: ALC and L Carnosine ...
Post by: George999 on September 16, 2008, 11:39:06 AM
Quote from: Ralf3 on September 16, 2008, 10:58:12 AM
Quote from: George999 on September 15, 2008, 10:21:27 PM
They work by a different mechanism.  They are definitely effective to a degree, but they don't actually affect the cytokines directly like Pentox and Mangosteen.  - George

And is there anything else, that affects cytokines like Pentox or Mangosteen? Any supplement or combination of supplements ?

When it comes to directly dealing with cytokines, Pentox is the only option I know of.  It systematically inhibits TGF-beta1, and that is a good thing.  While Mangosteen also seems to inhibit TGF-beta1, it is also known to inhibit TNF-Alpha which we now know is a bad thing when it comes to Peyronies.  However, I am now exploring another possible option.  That would be Vitamin D3.  Vitamin D3 tends to lower levels of TNF-Alpha also, BUT it does so by making TNF-Alpha more effective.  TGF-beta1 in an inflammatory cytokine that encourages tissue accumulation and is associated with fibrosis.  TNF-Alpha is an inflammatory cytokine that encourages tissue dissolution and is associated with diseases like rheumatoid arthritis that involve actual tissue loss.  The two tend to balance each other in the normal human body.  Thus, with Peyronies associated with a deficiency in TNF-Alpha, D3 sounds like it COULD BE a good thing to me.  And with D3's growing reputation for balancing the immune system AND the increasing realization that many people are deficient in D3, this could prove a useful supplement.  I have been taking 1000IU for quite a while and am now increasing that to 2000IU which is a bit much, but I will try to be on the look out for any bad effects.  Hopefully, I will be able to convince my doc to get me a blood test in November to check for any out of range calcium levels or other bad side effects.  - George
Title: Re: George and Vitamin D3
Post by: Ralf3 on September 16, 2008, 04:25:35 PM
Very interesting thing this D3...

QuoteGeorge999
I have been taking 1000IU for quite a while and am now increasing that to 2000IU which is a bit much, but I will try to be on the look out for any bad effects.

http://www.vrp.com/articles.aspx?ProdID=art2130&zTYPE=2

Quotehttp://www.vrp.com/articles.aspx?ProdID=art2130&zTYPE=2
Due to Vitamin D3's high safety profile in doses up to 10,000 IU per day and because of the wide role it plays in our health, consuming 2,000 to 4,000 IU per day of this nutrient at times of the year when sunlight is scarce is a prudent way to improve overall health.

;)

R3
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: snowden on September 16, 2008, 04:38:10 PM
Hi, I just want to start by thanking everyone involved with this web-site, especially the more knowledgeable members from whom I've already gained far more information than I did from two different urologists.

From browsing this web-site in detail I already have a plan to begin taking supplements such as acetyl L carnitine, l arginine, fish oil, and hopefully to obtain a prescription for Pentox.

My peyronie's started two and a half months ago while having sex.  I remember the moment vividly that I bent the wrong way and felt a sort of tearing.  Since then it's been very stressful. My girlfriend has been very nice so far, but even though I've explained it to her somewhat and had her read about it online, I don't think she understands the long term implications and I don't want to scare her too much right away.

The only thing I've been prescribed by a doctor is topical verapamil from PDlabs in Texas.  Through the search button on this web-site I find some mention of it not being very effective and not much about it being helpful.  The guy from PDlabs talks like it's a miracle cure.  Do you think I'd be wasting my time and money (it's very expensive and my insurance won't cover it)?

Thank you very much, and let me know if I should be posting this somewhere else or in another way.
Title: TNF and Peyronie's
Post by: Tim468 on September 16, 2008, 11:26:13 PM
George,

Reading the abstract (it is late and I will look later at the article), I do not come away with the notion that TNF should be given to help.

TNF is a potent pro-inflammatory cytokine, and it up regulates others in cascades. It is rightly called an "immunomodulatory" cytokine - but that does not mean that it's absence has let the others run rampant (ie it is not doing it's job to regulate the others). Instead, there may be a wholesale disruption of the entire mechanism for inflammation and repair, that leaves us with low TNF and high TGF.

It is interesting. In experiments I and some colleagues did, when we infected animals with bacteria, the TNF release was immense, and led to very strong changes that led to death frequently within hours. TNF was first called "cachectin" because it was associated with destruction of muscle leading to wasting in chronic illness like Leshmaniasis or TB. Like all cytokines, it plays a role in healing, but when it is dysregulated, it wreaks havoc in the body.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on September 17, 2008, 12:41:20 AM
TIM468 - what do you think the benefits are of usine Carnosine??

cheers
Title: Re: TNF-Alpha ...
Post by: George999 on September 17, 2008, 10:50:20 AM
Tim,  Thanks for the additional information.  I think the more appropriate place to discuss the supplement side of this issue is on a supplement by supplement basis on the oral treatments thread and I picked up there on that.  As I stated there, I do think that the more important way to "help" TNF-Alpha is probably not by blindly increasing it in amount, but by making it more effective and more targeted toward doing its job and NOT wreaking havoc in the body, and most of the supps I pointed out tend to reinforce that agenda.  On the other hand, probably the most valuable take away for me with this study is the revelation that, for sure, Peyronie's is associated with a much broader systemic syndrome going on in the body metabolically in terms of a really screwed up immune system.  NOT necessarily a weakened immune system to be sure, but a severely imbalanced immune system.  When I pointed out this study in the first place, I did so because I thought we would all benefit from a discussion on these issues, and I really, really, appreciate your expert thoughts on this whole process.  Thank you so much Tim!  I don't know what we would do without you.  You are such a valuable asset on this forum.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on September 18, 2008, 12:14:58 AM
Iceman, I think of carnosine as a beneficial supp for regulation of glucose metabolism. I am not where George is yet, but I am trying to get there vis-a-vis exercise and diet. I am increasingly concerned that testosterone plays a regulatory role in promoting the metabolic syndrome and that my lower than average levels are making it harder for me to get my blood chemistry in order. Also, it makes it harder to get up and go, and for exercise to benefit me (ie help burn calories and build muscle.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on September 18, 2008, 12:58:17 AM
TIM468 - is the regulation of glucose metabolism caused by the use of carnosine beneficial in the treatment or at least helpful in negating/reducing pain + inflammation assoc with Peyronies Disease
Title: Low Testesterone
Post by: jackp on September 18, 2008, 09:43:22 AM
Tim
I have a very low testesterone level. B/4 peyronies in 1995 I asked my GP to check it but he thought it was not necessary. I know now from my symptoms that I have had low testesterone for at least 30 years.
Also after my heart stents 10/06 doctor had me on Vytorin and it lowered my total cholesterol to 89. I read somewhere that a man should have at least a 150 reading to have enough fats in the blood to circulate hormones. I quit vitorian and my level came back to 157. Felt much better and the testesterons shots worked much better.
Could this be a link to peyronies?
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on September 18, 2008, 01:06:45 PM
Iceman - I do not know the answer to that - perhaps George can chime in.

JackP - I absolutely think that a lower than average testosterone can contribute to Peyronies Disease - but it has not been proven yet.

Tim
Title: Re: Chime chime ...
Post by: George999 on September 18, 2008, 09:23:43 PM
Concerning the current round of questions I can tell you all how I feel about it.

1)  I believe diseases like Peyronie's are "caused" by a confluence of multiple factors that may vary somewhat from person to person.  Various things set the stage systemically and then a minor mishap and due to the systemic anomalies normal healing does not take place and aberrant inflammation and fibrosis set in.

2)  I DON'T believe that there is any one "silver bullet", at least not yet, that can resolve Peyronie's.  There are a number of things that I believe CAN be helpful.  But no one thing in isolation can do the job.  Likewise there is NO one thing that by its absence will hugely hinder your fight against Peyronie's.  I think some are dying an early death simply because they can't get access to that one substance that will magically "do the job".  Regrettably at this point there is no such "silver bullet" out there and probably won't be for a long time even though there are exciting new things in the development pipeline.

3)  There ARE a string of things that can be helpful.  Pentoxifylline, Acetyl L Carnitine, Full Spec Vitamin E, and the VED can be helpful in a MAJOR way.  There are other things that can also be beneficial.  Among them are SAN VasoFlow, Horny Goat Weed,  Mangosteen and such.  There are also some things that may not be particularly helpful, BUT may be particularly harmful in terms of Peyronie's IF you are deficient in them.  I am referring to things like B Vitamins, L Carnosine, and Vitamin D3.  There are others.  In these cases, one can often get just as much benefit by taking, for example, one or two pills a week of these things rather than three a day.  The point is not that they are somehow therapeutic, but rather, since they have anti-fibrotic characteristics, we want to make sure we are not DEFICIENT in them.  Lately I have been pounding on D3 simply because it is being tied to more and more maladies AND researchers are discovering that huge numbers of people are simply very deficient when it comes to D3.  It turns out that there are studies indicating that D3 both upregulates TNF-Alpha (an inflammatory cytokine) AND is anti-inflammatory at the same time.  That makes it pretty unique.  It does this by performing as an immunomodulator which focuses TNF-Alpha's wrath on the bad guys rather than allowing it to run amock.

4)  Food is a biggie also.  No adays we KNOW that high fructose corn syrup, for example, CAUSES diabetes.  Enough said.  We shouldn't be putting such things in our bodies.  I could go down a list.  And from food, we could go on and on.  Smoking, excessive drinking, recreational drugs, abuse of prescription drugs.  Hello?  Sorry to be preachy on this, but none of these things are going to help your Peyronie's issue.  And I KNOW it is at times virtually IMPOSSIBLE to implement a healthy diet and lifestyle in our screwed up world so I don't think becoming fanatic about these things is a solution either.  But the more of these things we can get right, the better our chances of recovery or at least not getting worse.

5)  It goes without saying that we are all different.  So what works for one might not work for another.  And what is more beneficial for one might be less beneficial for another.  What is attainable for one might not be attainable for another.  We all have to do what we can with what we have to work with.  But I AM VERY CONFIDENT that most of us can attain a measure of success in dealing with Peyronie's until, before very long, more tools become available to us.  There is a lot of reason for hope and optimism.  I know I have months of gradually getting better at times only to hit a spot where everything seems to be falling apart.  But then you reposition yourself and start over again.  This has enabled me to beat back the effects of Peyronie's over and over and you can achieve that too as many of you already are.

6)  Iceman, I don't know what to tell you regarding Carnosine.  I certainly don't think it is something you need to take daily to derive benefit from.  But I believe personally that a deficiency in Carnosine (which is found in certain meat products) makes one more vulnerable to Peyronie's.  There is at least one study out there that I have previously cited which indicates it to be beneficial in terms of general health.  It IS an essential nutrient.  You DON'T want to be deficient in it.  Thats enough to make me want to be taking it.

I could list a lot of other points, but these are the ones that come to mind at the moment.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on September 18, 2008, 10:28:36 PM
George - a great post - this should be mandatory reading for every newcomer to the boards!

Tim
Title: Questions over questions
Post by: didi20031 on October 02, 2008, 06:53:26 AM
Hi @ all!

First at all thank you very much for this great forum!

I am a (nearly) 34 year old guy from Austria (so, sorry for my bad English) and I was diagnosed with Peyronies Disease one week ago. You all can imagine how I feel at the moment! In the last days I read a lot of posts in this forum an also some of the scientific articles and useful weblinks which are quoted here. However, I am quite confused by the large quantity of different information and I still have some questions... I hope you will try to help to answer at least some of them...

I am going to post my detailed history in the respective section in the next few days too. At this point I would like to give you a summary:

It all started in the middle of July, when after some days of frequent and prolonged masturbation (I was on holiday and my partner had to work...  ;) ) suddenly I felt a mild pain and discomfort in my penis when erected. I thought that would go away after some time and it really got a little better, but didn't go away totally. After about a month I noticed some kind of a nodule directly below the head of my penis. It has the form of a half ring parallel to the sulcus going from top-right down to the frenulum. It felt like a large hard vein or other vessel. I started to do some research on the www and made an appointment with an urologist. That was, when I first read about Peyronies Disease and I started to panic. From that moment I had a great range of different symptoms that – I suppose - were not all related to Peyronies Disease: pain in the flaccid penis (also the contact with my trousers caused discomfort), pain in the groin, pain in the testicles, a kind of deafness of my gland, pain in the rectum, discomfort while sitting, pain in the lower back, missing libido and ED, frequent urination (for 2 days), burning of the urtethra during and after urination. Every day there seemed to be a new "surprise" while other symptoms left (or nearly). I think (hope) that i.e. the ED was/is a psychological effect.

After the first check by an urologist, who told me that he could not find anything neither palpating nor using ultrasound I was so happy. He couldn't tell me where my problems came from but he assured me that it was not Peyronies Disease. I found out later that I knew more about Peyronies Disease than he did...  >:(

Last week I had another check at the university clinic and the doc said it was Peyronies Disease by palpating (no ultrasound). I had done my "homework" on Peyronies Disease before and so I knew about different, more or less promising, treatment options. I asked him about pentox and he told me that it was not an accepted treatment for Peyronies Disease in Austria and so he was not allowed to prescribe it. However, he told me talk about it with my GP. Since I am "lucky" and suffer from tinnitus, she was able to prescribe the pentox.

In the last days I did some additional research on Peyronies Disease and other possible diseases of the penis and I found a disorder called sclerosing lymphangitis (SL). I am wondering/hoping if the uro at the clinic was wrong and SL would be possible?!?!?!

After two and a half months after onset (I know, it is a very short period for Peyronies Disease) I am still optimistic about my situation. Things didn't get worse and the pain of the flaccid penis is nearly gone. It mostly comes back when I am very nervous, when I am relaxed it's quite ok. Tonight I woke up 4-5 times with an erection that was quite good and did not feel too bad. I avoid masturbation at the moment in case that I really have a SL. I take 2x400mg of pentox, 2x 400IU of vitamin E and 2x1g of ALC per day in case it is Peyronies Disease.
Up to now there is no curvature, maybe a little indentation during erection where the nodule is located, but I could not tell for sure if it was there before, or not...

Ok that's where I am at the moment. Here come my questions:

1) Can all my symptoms come from Peyronies Disease or should I consider a check for other diseases? I also read about chronic pelvic pain syndrome. Could it be that I have won the jackpot and suffer from both?? Anyway, I don't exclude that some symptoms are psychological effects...

2) How can Peyronies Disease and SL be distinguished? Three days ago I noticed something new: some kind of a thin hard vein or other vessel which goes straight from my nodule, over the whole penis shaft to the basis. I cannot tell where it finishes, since it enters into the groin. Is this a typical side-symptom for Peyronies Disease??

3) The uro told me to just "wait and see" (that's what many of you guys heard too). After a few months the disease stabilizes and if there should be really bad deviations one can still correct it surgically. After all the histories I read in this forum: Has anybody here really reached a stabile phase?? It seems to me that the Peyronies Disease in all cases proceeds and proceeds! When can surgery be done if it doesn't stop?

4) Is it normal that the nodule I have is sometimes harder and sometimes softer? When my penis is really relaxed I only can feel this blood vessel-like string below the head of my penis and the endured vein running from there to the basis of the shaft. When I am very nervous or when I am cold the penis shrinks (that is normal) and then the lump feels much bigger and harder...

5) I read about what is the effect of pentox in Peyronies Disease treatment, but I still don't understand what is the role of ALC?!

6) When I feel pain in my flaccid penis it is mostly located in the gland and not in the shaft. My uro said that should not be because of the Peyronies Disease, it's more likely to be caused by a neurological problem, maybe due to problems with the spine. What do you think about it? Where do you feel pain? Directly at the site of your plaques or even in other parts of the penis?

7) And last but not least a question that we all want an answer to, but nobody has good one: Why me???  :'(

Sorry that I bombard you with so many questions. Maybe some of them have already been answered in the forum. I read a lot of postings in this forum, but I still have the questions above.

Thank you all so much in advance for your patience and your help!
Best wishes to all of you from Austria!
 
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: alcohen on October 02, 2008, 08:49:47 AM
I have to run to class right now so don't have time to answer all the questions but I will come back later to answer some if somebody else hasn't responded.  I just wanted to say that your symptoms and progression sound identical to mine.  I have the strange vein type thing that comes and goes and goes down into the base.  It also changes depending on if I am nervous or relaxed with some blood flow.  I have the pain when my penis brushes against my boxers (I turn them around backwards so my penis does not brush against the material that is present on the hole on the front.  it doesn't solve everything with that though) Also, I lot of my pain is in the glans too...  I was told by two doctors as well that I definitely did not have Peyronie's disease.  I am waiting on an ultrasound from the third who said that it sounded like I had Peyronie's disease.  Also, my problems started after having prolonged masterbation from my girlfriend so the onset is a similar fashion to yours...

Good luck with everything.  I am sorry that you are suffering from something that sounds like Peyronies.  It has been four months since onset for me.  I have been on Pentox for 7 weeks. 
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on October 02, 2008, 05:20:01 PM
alcohen and didi20031,
I agree that both of you have very similar systems. And I very strongly believe that you both have suffered some type of damage to your penis. While it seems to me that neither of you were doing anything other than what I would consider normal masterbation, it is hard for me to understand how this damage was caused. AND....... I don't think either of you have Peyronie's Disease. You do have similar symptoms to what has been posted on this forum, but not everyone on this forum has Peyronie's Disease. It seems that we are trying to broaden the definition of Peyronies Disease to any unusual pain or penile irregularity. Don't get hung up on whether it is Peyronies Disease or not. Both of you need to get to a sexual specialist and get a proper diagnosis. Just don't sit still for ANYONE who tells you "wait and see" or "nothing can be done".

didi20031,
I don't have comments on all your questions, but will respond to your question 3. I think there are many guys on this forum who have reached "stability" with Peyronie's. The plaque does stabilize and will then start to calcify. Once calcification begins, uro's who do know what they are talking about will tell you that neither meds, traction, VED's, injections, shock wave therapy, etc will counteract Peyronie's. It is possible to get to a point where surgery is th only option. I know it sounds scary, and is a last resort, but I did have the surgery and it cured me.   And by the way..... your English is fine    ;)

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on October 02, 2008, 06:21:39 PM
Quote from: lwillisjr on October 02, 2008, 05:20:01 PM
Once calcification begins, uro's who do know what they are talking about will tell you that neither meds, traction, VED's, injections, shock wave therapy, etc will counteract Peyronie's. It is possible to get to a point where surgery is th only option. I know it sounds scary, and is a last resort, but I did have the surgery and it cured me.   And by the way..... your English is fine    ;)



Out of interest, do others here agree or disagree with the statement in bold? Btw, I'm not saying that surgery isn't a good option, because at times I can see how it can be.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on October 02, 2008, 08:14:32 PM
 It's more complicated than that.

Calcification implies progression, and sometimes, stability. That lends to a surgical cure. OTOH, if you are still active and progressing, then surgery will offer a setback as often as a cure. Stability with or without calcifications is the key, IMO.

I note that calcifications were noted to regress over two years with treatment with Pentox in the first report of it I ever read.

Tim
Title: Re: Silly Sayings ...
Post by: George999 on October 02, 2008, 08:58:50 PM
Quote from: lwillisjrOnce calcification begins, uro's who do know what they are talking about will tell you that neither meds, traction, VED's, injections, shock wave therapy, etc will counteract Peyronie's. It is possible to get to a point where surgery is th only option.

I really don't understand how talented, highly trained professionals can make these kinds of assertions.  This is what is known as a "generalization" and using it on patients is not fair to those patients.  Its like the oncologist who lectures his patient with the "You must understand that you will die from this disease."  Why not error a bit on the side of truth and instead say "You most likely will die from this disease." or "Once calcification begins it is usually irreversible without surgery."?  Why do physicians try to act like God in these situations?

Tim gores the ox in his comment below which points out the actual Pentox paper.  The reality is that given the right environment, the body will heal itself every time from every malady under the sun.  The fact that the body is not healing itself tells us that something(s) abnormal is/are going on.  I remember like it was only yesterday that all the top specialists were insisting that damaged heart muscle, for example, could never heal.  Another stupid statement.  Then they happened to do a heart transplant without removing the old heart.  To their surprise, the old heart healed up and become normal.  Duh!   Just because they haven't been able to achieve it, they assume it to be impossible.  Its a God complex.  It never crosses their minds that they perhaps just haven't yet discovered how to achieve it.  I know people who have beat cancer.  There are not many of them, but they are around.  I am not saying these things are simple, I am only saying that given the right circumstances they can happen.  And it should be the physician's challenge to help their patients achieve those right circumstances.  Unfortunately though, most physicians seem to have been beaten down by the system to the point that they just tell their patients when its time to give up and die.

Hopefully any doctors looking on will forgive me for this rant.  I don't actually hate doctors.  I really hold them in high esteem.  I think they are over worked, under paid, and often under appreciated.  But there are a few areas where some of them really need to reassess how they deal with their patients.  - George

Title: Thank you for your replies!
Post by: didi20031 on October 03, 2008, 02:24:07 AM
alcohen and lwillisjr
thank you both for your replies! I am really grateful for every comment that could be of help!

lwillisjr
maybe it is peyronie's, maybe it is not. Anyway, the official diagnosis of the university clinic is that it is peyronie's. The nodule in my penis tells me that it is peyronie's. The pain during erections, which was the very first symptom, tells me that it is peyronie's. Other symptoms tell me it is not... My instinct says that it is peyronie's. The first symptoms (pain and later the nodule) were so characteristic for this disease. All the other problems started after hours and hours of research on the www and my selfdiagnosis: Peyronies Disease. That's why I think that my first uro may be right  partly. He said: "It is all in your head!" (Does it sound familiar to anyone?) Yes, it is possible that my panic (and during the first weeks I really, really was in PANIC) caused all the other "unexplainable" symptoms. It may sound weird to you, but when I finally had MY diagnosis (Peyronies Disease) confirmed by the uro at the clinic I was kind of... relieved!! I said to myself: "Ok, now you now what is wrong with you and you can start to fight against it. You may lose the fight. You probably will! But you know your enemy now and you can fight him!" At that point some of the most severe symptoms started to improve. E.g. nocturnal erections had nearly stopped, now they are back. The sensitivity of my gland is getting better from day to day... I started to take ALC four days ago and this morning I had my first erection for weeks that did not hurt too much. (Thank you for the hint, guys! I have taken it from this forum!!) What remains unchanged by now is the lump, but my GP agreed on prescribing me pentox (official version: against my tinnitus) for the next 6 months. So hopefully...

And...
QuoteAnd by the way..... your English is fine    Wink

Thank you!!  :) I guess my writing skills are a little better than my spoken English...

Didi
Title: Re: Thank you for your replies!
Post by: newguy on October 03, 2008, 03:59:18 AM
Quote from: didi20031 on October 03, 2008, 02:24:07 AM
At that point some of the most severe symptoms started to improve. E.g. nocturnal erections had nearly stopped, now they are back. The sensitivity of my gland is getting better from day to day... I started to take ALC four days ago and this morning I had my first erection for weeks that did not hurt too much. (Thank you for the hint, guys! I have taken it from this forum!!) What remains unchanged by now is the lump, but my GP agreed on prescribing me pentox (official version: against my tinnitus) for the next 6 months. So hopefully...


AT least it sounds like you are experiencing some positive changes right now, and are taking powerful steps to combat your condition (ALC, Pentox). Keep us informed of any future developments :).
Title: Re: didi
Post by: Hawk on October 03, 2008, 11:48:16 AM
Didi,

The link you posted in the "Off Topic" area for the book on pelvic area pain indicates much of the pain in the area or the anus, testicles, pelvic area (of both sexes) is the result of muscular pain.  The overview of the book suggests much of that is a result of protective responses that over tighten muscles and that stress is a factor.

If that is taken as true, then it would follow that along with the initial stages of Peyronies Disease and research that your worry and stress caused secondary symptoms to kicked in. 

It at least has to be considered.

Good luck!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: didi20031 on October 03, 2008, 06:21:41 PM
newguy
I will keep you informed!

Hawk
You are absolutely right. I am not yet through the whole book, but what I have read up to now sounds reasonable to me. The tightened muscles may be the "connection" between some of my symptoms and my psychological status. That could be the reason why some of my problems improved after having the diagnosis...

alcohen
Do you know the book "A headache in the pelvis"? Have you ever considered pelvic pain to cause some of your problems? According to the book it can be a reason for a great range of different kinds of pain (penis, testicles, perineum, anus, lower back, groin), insensitivity, lack of libido and also for severe ED.

all the best
Didi
Title: A Headache in the Pelvis
Post by: couldbeworse on October 03, 2008, 10:41:55 PM
I read "headache in the pelvis" a few years ago.  All I remember is that they make the counter intuitive claim that you can reduce pain by learning to contract perineum.  The contraction teaches you to control the tension in pelvis so you can eliminate it.  I clinch perineum in my yoga practice and i no longer experience pain- but it hasn't changed the shape of my wanker.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: didi20031 on October 05, 2008, 06:01:23 PM
No more answers to my questions from October 02??

Title: Question About Pain
Post by: greenplastic on October 05, 2008, 06:54:06 PM
Hello All,
I am a 21 year college student and I got peyronies disease about 2 years ago a few months after injuring my penis while masturbating.  I noticed a bump on the right side of my penis and I ended up with around a 20 degree curvature.  It is now stable.  However, I am still experiencing pain that I think is related to my initial injury.  It is typically at the bottom or side of the shaft and it usually happens when it is flacid.  Sometimes the pain is more of a itchy/tingling sensation which goes away after I rub it.  Anyway, I'm concerned that this pain is going to cause another episode.  Right now I am taking Vitamin E and IB Profen daily.  Should I consider ALC?  Does anyone have any other suggestions?

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Tim468 on October 06, 2008, 11:34:03 PM
Welcome Greenplastic,

It seems to me that we all experience this in different ways. It may be that we are describing a different feeling stemming from the same stimulus. For me, when things get active, I feel an aching sensation in my penis that does not hurt, but I have instinctively reacted to by trying to tug it longer (I think I developed a theory years ago that since the injury was due to "transformed myofibroblasts", that the same smooth muscle that shrinks you when you are cold was active when I was getting worse - so the natural remedy seemed to be stretching. Oddly, though the mechanisms and biochemistry are off, that may have turned out to be right.)

At any rate, pay attention to your body and try to do some stretching out when you are active - but NOT TOO MUCH. Hard masturbation or sex can make it worse at that time, whereas easy sex (or better yet, IMHO, the VED) can keep things limber and stretched out, minimizing contraction. Just my two cents worth. The key is to not either work an actively inflamed penis too hard, or to ignore the need for regular erections and let the contraction progress.

Tim

ps the supps sound good. I add vitamin C slow release and vitamin D3 too when inflamed.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: dem4206 on October 10, 2008, 04:49:07 PM
Hi, I'm meeting with doctor Rei Chiou in Omaha, Nebraska to possibly have a vein graft done and I will be having a penile dynamic colour-duplex Doppler ultrasound done. Can anyone tell me how it is done, what I will have to do, who does it, what will happen, how long it takes? I'm afraid it will be like having an x-ray or mri where they send you off to have a couple of 20 something girls do it that are giggling and chewing bubble gum while barking out orders at you.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: dem4206 on October 10, 2008, 06:02:06 PM
Sorry I wasent specific, I was asking about the ultrasound procedure. I already know how the vein graft works. I appriciate any feedback, thanks Dan.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on October 10, 2008, 08:27:10 PM
Dem4206
When I had my color doppler in 2004. It was discrite and in the doctors office.
The female tech came in the room and was always looking at the monitor facing the wall at my head. She never looked in the direction of my penis. Except during the exam I was under a paper sheet.
Doctor did the doppler first flaccid and injected a small amount of PGE1. (No it did not hurt barley felt it.) Then repeated the procedure.
Yes I had venous leakage and tried shots for ED. Big Mistake!! Shots for ED caused corporal fibrosis and made things worse.
Not a pleasant procedure but I have had worse.
Jackp


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on October 27, 2008, 04:49:15 AM
TIM468 or anyone...

I just had an endoscopy and was found to have a hiatias hernia  - could this be a result from the billion supps I take a day to combat Peyronies Disease - such as  ALC, pentox l arginine, vit e and d etc etc etc...If this is a cause what would be a good solution?
Title: Hiatus Hernia ...
Post by: George999 on October 27, 2008, 10:23:11 AM
Quote from: WikipediaRisk factors

The following are risk factors for having a hiatus hernia.

    * Increased pressure within the abdomen caused by:
          o Heavy lifting or frequent bending over
          o Frequent or hard coughing
          o Hard sneezing
          o Pregnancy and delivery
          o Violent vomiting
          o Straining with constipation
          o Obesity (extra weight pushes down on the abdomen increasing the pressure)
          o Use of the sitting position for defecation[1] (See epidemiology below)

    * Heredity
    * Smoking
    * Drug use, such as cocaine.[citation needed]
    * Stress


Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on October 28, 2008, 11:08:50 PM
I am going to try magnetic therapy - i bought some little dot like magnets x 40 on adhesive patches  - lets see how we go - so far its been a bit uncomfortable with them on me whilst sitting at work...

anyone had experience with this therapy
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: gerald on October 29, 2008, 09:12:56 AM
Has anyone besides me come down with Peyronie's after taking Metoprolol (Beta Blocker)?  I had no symtoms prior to the medication.  I then had a bypass and left the hospital with full-blown Peyronies.

Gerald - ghinin@verizon.net
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on October 29, 2008, 02:52:41 PM
gerald:

See my reply on the Oral thread. BTW, you do not need to post the same on different threads.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jon on October 30, 2008, 12:00:57 PM
so here's a question, but first some history on me:
30yo white male, T1DM (type 1 diabetic) of 18years, peyronie's for 8 and dupuytren's for 2.

Have any of you had an issue with dry orgasms or retrograde ejaculation since developing peyronie's?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: seaside2 on October 30, 2008, 12:45:39 PM
Jon,

A little older (By almost 50 years!!!) also T1 diabetes. Have some of the same issues and initially attributed it to the use of Flomax (Urinary flow enhancement). Flomax has a side effect of reduced ejaculate. Got off Flomax via the VED (Great side effect, BTW). Still have the same symptoms, though not as severe.

Old age? Diabetes? Peyronies? Who knows? I can't definitvely blame it on Peyronies Disease, but.........
Title: Retroejaculation
Post by: Mick on October 30, 2008, 04:09:48 PM
I am positive that Flomax caused retroejaculation in me.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on October 30, 2008, 05:39:39 PM
Note:

Flomax can and will present varying and some wild side effects. My uro has just about quit RXing it for her patients because of them. Since it is designed to help with urine flow, it has as well a tendency in some men to reduce the size of the tubes connecting all the reproductive glands into the prostate gland. This causes the seminal fluid to become compressed in the gland and during ejaculation reverses into the bladder instead.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jon on October 30, 2008, 06:30:46 PM
Well.. no flomax for me. The only things I'm on right now is traction 8-12hrs a day, 400mg pentox 3x, 1g ALC 3x, 1g l-arginine 3x, 5mg cialis 1x, a multivitamin and a b-complex supplement.
It kinda sucks. I mean the lack of cleanup is ok, and the lowered risk of pregnancy is a definite bonus (wearing a rubber anyway), but, pardon the euphemism, the girl I'm seeing particularly enjoys being, um, frosted :D..

meh.. looks like another uro appointment for me.
Title: Re: Gerald - Peyronies Disease and Retrograde Ejaculation
Post by: Hawk on October 31, 2008, 12:13:16 AM
Quote from: jon on October 30, 2008, 12:00:57 PM
Have any of you had an issue with dry orgasms or retrograde ejaculation since developing peyronie's?

Jon,

An enlarged prostate can by itself cause retrograde ejaculation.  Peyronies Disease could not cause this to my knowledge because by the time ejaculation get to the penis (where Peyronies Disease is), it has gone far beyond the "intersection" where retrograde ejaculation makes the wrong turn.

A good illustration of the prostate and bladder make this easier to understand.

Good luck
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jon on October 31, 2008, 09:39:27 PM
Well, I called my uro today, and he suggested taking 50mg of ephedrine daily, or 120mg of pseudoephedrine 2-3x daily. something about it closing the bladder neck, thereby preventing retrograde ejaculation. Guess I'll give that a go.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on November 01, 2008, 02:36:12 PM
Quote from: jon on October 31, 2008, 09:39:27 PM
Well, I called my uro today, and he suggested taking 50mg of ephedrine daily, or 120mg of pseudoephedrine 2-3x daily. something about it closing the bladder neck, thereby preventing retrograde ejaculation. Guess I'll give that a go.

I was under the impression that ephedrine can decrease circulation to some parts of the body. It seems strange that a uro would suggest it to someone suffering from peyronies.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on November 01, 2008, 11:00:55 PM
newguy:

Some uros/mds prescribe it to relieve prolonged erections as a result of the "pills", injections and other erectile meds. So I agree with you that must be something we are missing here, huh?

Old Man
Title: ephedrine
Post by: newguy on November 02, 2008, 01:50:07 AM
Quote from: Old Man on November 01, 2008, 11:00:55 PM
I agree with you that must be something we are missing here, huh?

Yes, from what I have heard the results are a little like how the body reacts to a fight or flight situation. The heart rate increases and blood flow is reduced from all but essential organs. Some people take it as a recreational drug. There are many, many people in bodybuilding taking ephedrine as part of a body fat reducing routine too. Many of these guys report a tempoary shirnking of the penis, due to the reduction in blood flow. I dread to think of the potential consequences for someone suffering from peyronies, when much of what do revolves around improving circulation and stretching/remoulding as oppose to shrinking.


Title: Re: Weight Loss
Post by: Bobby Magee on January 10, 2009, 08:11:38 AM
Hi Guys, (gals, I guess) I,m 11 mths since 1st symptons, and experience about 20 lb weight loss, cant find answers, is this a factor ?????, i,ve been off site,  BUT IM BACK,  to get more active,  GAME TIME,  has anyone else had exp...Bobby Magee

Post moved from the "Awareness and Advocacy" board
Title: Re: Bobby McGee - Weight Loss
Post by: Hawk on January 10, 2009, 09:30:46 AM
BobbyMcGee,

There in no established connection between Peyronies Disease and weight loss and none of the thousands I have read on any forum have ever reported an association. 

Time to see your doctor!
Title: Re: Bobby McGee - Weight Loss
Post by: Tim468 on January 10, 2009, 11:57:58 AM
Weight loss, when not the effect of efforts, or an expected outcome of activity (ie started a new job as a back-country ranger), is cause for a visit to a doctor to be sure that nothing is going wrong with your body. The top reason may be depression leading to decreased eating, but wouldn't it be nice to know that you didn't have cancer?

Get your butt in gear and let us all know that you are OK!

Tim
Title: Tim, Old Man, Hawk, George?
Post by: lance on January 10, 2009, 07:07:10 PM
You guys seem quite knowledgeable.  I know you're not a physician, so I'm asking for your opinion/thoughts on this...

A year ago, my penis ruptured.  Not like a "popping" sound fracture, but more like several "tears."  The tears led to cord-like plaques that run horizontal.  Fortunately, it led to no curvature or other severe deformities.  I just have the visible cord-like plaques. 

Several months ago, the plaques started becoming more prominent.  In other words, they stick out more.  Also, I can now feel the plaques IN MY PENIS, which I couldn't before.  When I say "feel", I mean I can sense where the plaques are located (not saying "feel" such as with my hand).  When I get an erection, I can still achieve maximum size with no curvature, but my penis feels "sore."  My belief is that for whatever reason, when my girlfriend and I were having sex, the skin became more stretched and probably led to more "tearing." 

In summary, the cord-like plaques have definitely gotten bigger.  My penis feels sore.  Sometimes the plaques have a minor burning sensation.  But it's over a year since the first trauma/injury, and I have no curvature or E.D. symptoms.  I'm presently taking Arginine and Pentox.

Finally, here's my dilemma...

Through all of this, I'm fortunate to have no extreme deformities.  But I've reached a crossroads.  Here's where I request your advice/consideration.  Is it better to STOP having sex so that the tears can heal?  Or is it better to maintain having sex, so that no inelastic scar tissue forms?  What is the school of thought on this?  Should I allow for morning erections to provide all the stretching that I need, or should I continue to have sex?  Is there great harm doing nothing and letting the tears heal on their own?

Any advice from anyone is greatly appreciated.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on January 10, 2009, 07:59:44 PM
I would take a 30 day break from sex and use the VED. Then, see if gentle intercourse (no acrobatics) is OK. The VED will keep the stretch going.

Tim
Title: any suggestions?
Post by: whygodwhy on January 11, 2009, 03:09:55 PM
I have a 10-15 degree curve to the left.  The thing that bothers me the most is the way my penis frequently looks while it is flacid or getting hard.  It doesn't just hang left - there is a hourglass effect.  It narrows in the middle with a dent on each side - but as it gets fully hard this goes away.  This doesn't happen all the time though (sometimes it inflates normally w/ no hourglass effect), How can i stop this from happening??  ???  Why does it only happen sometimes?
Is it temperature related?  Related to how recently I had an orgasm?  Diet?

Is there a pill or drug or anything I can take???  Im overwhelmed with the amount of options out there.  I own a VED (although I no longer use it) and have tried verapamil cream - I just want it to inflate better

I should probably mention that I take Zoloft daily and also smoke a pack of cigs a day.  This might have something to do with it

Sometimes It just bends left while flacid/getting hard and this is the way I want it to be all the time.  What can I do?
Title: Re: WGW
Post by: Hawk on January 11, 2009, 06:08:07 PM
Your concern and your approach both leave me puzzled.

Exactly why does the shape of your penis in the brief transition from flaccid to erect bother you so much (or at all), especially since it only happens on occasion?

My next question is why would you smoke if you are truly concerned with your health.  I am sure you do not think some pill can compensate for general bad health habits.

The post seems to illustrate the contradiction of; on the one hand being overly concerned, and on the other hand not at all concerned.
Title: Re: Open Questions on Peyronies Disease/VED therapy WGW
Post by: Old Man on January 11, 2009, 06:26:29 PM
WGW: 

Sounds to me like you should resume use of your VED. Get back on the 26 week therapy for the three cylinder VEDs, if you have that one, or use one of the single cylinder protocols if you have only a one cylinder VED.

I firmly believe you will see good results from VED usage. At least, you will provide more blood flow into and out of the corpora which promote better penile health. Check out the VED topic/thread and you will see many guys have gotten good results. Very few have reported no change at all.

Old Man
Title: Re: WGW ...
Post by: George999 on January 11, 2009, 07:19:59 PM
I think both Hawk and Old Man have provided you with some good insight here.  I would pay attention to their advice.  If you are taking Zoloft, I would also advise that you have your vitamin D levels tested and make sure they are optimal at 50ng/ml.  Low vitamin D levels could be exacerbating both problems.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Bobby Magee on January 11, 2009, 10:23:25 PM
Thanks to Tim 468, + Hawk, Im slow to the Tech., World so my post, you guys read was orig., On Aware. and Advocacy.,.now I,ll use this, Open Quest., site, Tomorrow I,m sched. to see Dr. Ungaro, at Mass Gen. it took me 3 mths, to get this appt. I saw a Urog., in Haverhill $ mths ago. and he told me I was in early stages and see him in 6 mths.,At that time my penis was at 45 % 1/2 way from beg. to end,. Now it is almost  90%, upward, I,m having occasional sex with a friend,. she is more than delighted at my present condition,. So I have mixed emotions, I think you guys can relate on that, I,m 61 yrs,old and in great condition, Besides my weight loss, My friend reminded, Last june, july, and August, I worked my but off, restoring a Home in N.H., now for 2 mths Im involved in movig Antq, furniture, from house to truck, truck to Auction, she says I this is prob. reason for the loss, and shes poss., right, but my mind tells me diff., and i,m working on not letting my head, run with this,.anyway I,m a fighter and former Footballer so like I said before GAME ON, Thank you two for the advice, Its a real boost, ps. I was following the prog. on the Urolgist from BU, and your Awareness future, prog., when you know what direct., you,re going., I live in Amesbury, mass.  count me in on doing some legwork, Bobby Magee
Title: Re: Bobby Mcgee
Post by: Hawk on January 11, 2009, 10:31:20 PM
Bobby,

I moved your post because this is the board for discussion on Peyronies Disease treatment and issues.  On this board are several topics.  Post under the topic that deals with what you are discussing in any particular post.

Do I understand you to say your friend is happy with your 90 degree bend?  If so, could you explain that.

I had some effort reading your post because you abbreviate many words.  This makes it difficult for all readers and especially those that are not native English speakers.  I know it takes more time but please go easy on the abbreviations.

Hawk
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Davey on January 12, 2009, 11:59:21 AM
My penis curves downward like a banana.  I know I did this to myself as a kid masturbating by humping my bed. At the time I had no clue what I was doing or doing to myself & not a day goes by that I don't wish I could go back and change that because of the dramatic effect it has had on my life. I have never seen a doctor about my problem because I have always been so ashamed. I have also never had sex or any sexual contact for the same reason, & have turned down one night stands & relationships from attractive women who threw themselves at me.

I want to make changes in my life but am still scared of the embarrassment & rejection. Biggest fear is a girl that might tell my friends etc.  Any advice on you guys could give me about what to expect if I saw a doctor or if he could even do anything to help me. Is there any treatments for my situation. Everything I read seems to say no as long as you can still get an erection, which is half the reason I can't bring myself to go to a doctor. I can but the shape is very deformed.  Also I recently started dating this girl, she was to amazing not to pursue. It hasn't got sexual, but how do you guys prepare a new partner for something like that. Is it something you are upfront with them about your issues & prepare them for what they will see before it does go sexual, just so there is not shock value?  I don't even think i could do a missionary position because of my angle. Anyone have similar problems & advice about what position I should try?  Thanks for your help.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: joe on January 13, 2009, 07:10:25 PM
Davey, if it has curved down since you were young, are you sure it is Peyronie's and not congenital?  You didn't mention if it was ever straight so I wanted to clarify.  I had a slight downward curve before Peyronie's but now it is definitely up.  I worry about my curve all the time, but I have seen porn videos where the guys curve is worse than my own.  So I remind myself of that and that girls don't care much at all - heck they might love that you can hit a spot no one else can (assuming you can penetrate).  I would mention it to the girl and I bet that if she likes you she'll be supportive.

I would definitely see a urologist, but make sure you go to one who specializes or at least keeps up with the latest research in Peyronie's.  I figured all uro's were the same but mine prescribed me Potaba - it seemed to slow the progression but didn't make it any better.  If you read the boards here you will see that Pentox is a popular treatment but only some uro's will prescribe it.  Many here have straightened there curve out enough to be happy with the VED so you might want to read those posts also.

QuoteEverything I read seems to say no as long as you can still get an erection, which is half the reason I can't bring myself to go to a doctor.

I don't think this is true - I believe if you can't penetrate due to the shape then surgery is an option once all else fails.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on January 13, 2009, 10:00:23 PM
Davey!
If you can still get an erection that is half the battle. I'm not sure how you got the impression that is you can get an erection then there is nothing else you can do. And many of the therapies apply whether your curve is from Peyronies Disease or congenital. If it is due to Peyronies then some drug therapy may help as well.

For sure you can try either traction or VED therapy. There is lots of information on this forum. But my best advice is to try to get into a relationship and not to worry about size, shape, curvature, etc. Unless your curvature is severe you might be surprise at how easy intercourse can be. I had a sharp 70 degree upward bend, and was able to have intercourse but it was starting to get uncomfortable for the wife. For you a "doggy" or "spoon" position might be ideal.

Bottom line is don't guess and beat yourself up. You might find what you have works well.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Davey on January 14, 2009, 01:23:59 AM
Quote from: joe on January 13, 2009, 07:10:25 PM
Davey, if it has curved down since you were young, are you sure it is Peyronie's and not congenital?  You didn't mention if it was ever straight so I wanted to clarify. 
No, once upon a time it was your standard issue perfectly healthy one, when I was about 11 years old or so. Growing up in a religious home I was always taught masturbating was bad, so somehow in my mind at that age came up with that dry humping stuff wasn't really masturbating. Pretty messed up I know, but all I knew was it felt good at the time even if it was uncomfortable as well. So technically this isn't what I understand Peyronie's to be, but unfortunately I have a lot of the same curvature issues from the trama I caused on myself & had no clue where to seek such advice other than this forum. So thank you guys for your help.
Quote from: joe on January 13, 2009, 07:10:25 PM
I worry about my curve all the time, but I have seen porn videos where the guys curve is worse than my own.  So I remind myself of that and that girls don't care much at all - heck they might love that you can hit a spot no one else can (assuming you can penetrate).
Yeah I have seen some of those guys as well. They do give me hope. Then again they are hung like horses.

Quote from: lwillisjr on January 13, 2009, 10:00:23 PM
Davey!
If you can still get an erection that is half the battle. I'm not sure how you got the impression that is you can get an erection then there is nothing else you can do. And many of the therapies apply whether your curve is from Peyronie's Disease or congenital. If it is due to Peyronie's then some drug therapy may help as well.

For sure you can try either traction or VED therapy. There is lots of information on this forum.
Thanks, this gives me some hope.


Quote from: lwillisjr on January 13, 2009, 10:00:23 PM
Unless your curvature is severe you might be surprise at how easy intercourse can be. I had a sharp 70 degree upward bend, and was able to have intercourse but it was starting to get uncomfortable for the wife. For you a "doggy" or "spoon" position might be ideal.

Bottom line is don't guess and beat yourself up. You might find what you have works well.
We'll over the years I have gotten depressed about this, & it's hard to swallow having done it to yourself, but at this point I know it was just a dumb mistake as a kid I made, so it's hard to get beat myself up to much at the same time. It's just taking that next step & trying, I think I am at least progressing there. Until 2 days ago I had never told even went as far as ask for help on a message board much less tell or show another person.

I think I will bite the bullet & seek some medical advice.  Should I just look up a urologist, or how would I go about seeking one that would be familiar with these procedures?   
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: gregvebe on January 14, 2009, 04:09:46 AM
hi everybody
am a newbie here
33 y old, diagnosed with the disease since june 2008
hourglass deformity at the base ( hurts) en a big plaque just under the gland about 2 cm, bending my penis 30 degrees to the right


worstened after 9 injections of verapamil
take vit E orally

any other tips?, cannot estimate the degree of my problem since i havn't seen others to compare

should i avoid activity to prevent making it worse or not?

thx for all your help
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on January 14, 2009, 06:38:57 AM
gregvebe
Welcome to this forum. You have come to the right place for information and help. I found this forum 10/07 and it has been a LOT of help to me.
First let me get my rant against sticking needles in your penis. I used trimix and PGE1 injections for about a year for ED. Little to no help. The injections made my corporal fibrosis worse and caused a failed implant attempt 10/07. I had to find a specialist in implants and go 200 miles to get it done successfully.
The best advice I can give you is go to the VED section and get the VED that Old Man recommends. The VED exercise help keep your penis healthy and hopefully prevent size loss to to peyronies.

IMHO do not stop sexual activity. Sex is the one thing that keeps the penis and prostate healthy.

Lots of Luck. Old Man will give you lots of good advice on VED usage.
Jackp
Title: Re: Davey
Post by: Hawk on January 14, 2009, 12:10:29 PM
Davey,

I am very suspicious that you do not have Peyronies Disease and that you did not do this to yourself.  Even if you did, I guess 90 % of us could say that either because we zigged when she zagged, or we injected something for ED, or we used poor nutrition, or we did not figure out the right therapy soon enough.

The penis does not really start to develop into what it will be until puberty when we develop secondary sexual characteristics.  Almost all boys masturbate in frequent and diverse ways.  Because you masturbated (A) and because your forming penis in puberty got a curve (B) does not mean one caused the other.  However, what if it did?  You could as easily been hit by a soccer ball or kicked by a horse doing some other "boy stuff".  This is where you are now.

Get a medical assessment.  Do not waste time on a doctor that has no expertise.  Ask if they have any background with Peyronies Disease or congenital curve.  Ask in a matter of fact way.  If it was an embarrassing topic to them they would not be urologists.  You cannot decide to deal with peoples urinary system every work day of your life and then consider it strange that the people you see talk about their genital area or bodily functions.

Good luck

Hawk
Title: Loss of libido recently and to worry or not
Post by: Fredca on January 14, 2009, 02:58:55 PM
Hello, I have read that remaining sexually active is assumed to be a good thing several times.

Because I have no partner; I can pretty much only masturbate- this is something else than just sex.
I have always thought it could cause damage, but because my age of 29 I couldnt help that I had to do it often.
Often being 2-3 times a week. But I thought the remaining sexually active thing might weigh up against it.

Anyway,

Since last week I notice loss of the interest in doing it. Its not that any pain or discomfort is the reason, this didnt stop me before as well. Then again, since 2 weeks my penis has become extra painful.
So I am not doing it at the moment and think of waiting with doing it till I feel the need again.
Would that be wise?

While it may be good to prevent any form of further trauma that may be caused, if that even has anything to do with my increased peyronies in the first place which I kinda doubt but still; I wonder what the impact could be of this on my system. Its definitely not normal.

To be honest it also worries me to not feel the need to ejaculate. It is not normal.
I hope it is just a psychological thing and I may be recovering from this.

But if it is not, then what is it? Can the peyronies ever trigger something like this? Is my sexual function taking a break by itself to give time to fix the issue? Should I be worried? Or should I be less worried and is it just the mind influencing the body?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: didi20031 on January 14, 2009, 04:53:32 PM
fredca,

I am not an expert and I don't know if what I think is supported by those who have much more experience with the disease than I do. However, in my opinion your body just knows what is good for you and what is not. At the moment maybe a break would be the best for you. I was in a very similar situation. I am 34 and into this mess since July 2008, so for six months. For a few weeks I felt quite a lot of pain and no need at all to masturbate or to have sex with my partner. I even had a quite severe ED problem in that period. I tried to masturbate every now and then and after ejaculation (which often occurred in nearly flaccid state due to ED) the pain used to get much worse. At the end of November pain started to get better and I think it was because I masturbated or had sex only about once a week. Now I am nearly free of pain. I masturbate or have sex 2-3 times a week and it feels quite good. I can get firm erections now (even if the glans is still softer than it was before the onset of peyronie's) and I do feel the need to ejaculate (not yet as often than before, but I have the impression that it is still improving).

So, if you have pain and don't want to ejaculate, maybe it is because your body wants to tell you that it needs a break. I don't know if the risk to have corporal fibrosis increases drastically if you reduce your sexual activity a little bit for a while. In my case I had the impression that masturbation / sex had a negative influence on my peyronie's for the period of about three months.

All the best,
didi
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: gregvebe on January 14, 2009, 05:26:31 PM
thx to all here
it is great to know I am not alone
nobody talks about it
i am glad to know I am not the only young chap here with this evil disease and that we all feel and experience quite the same
does anybody knows a site with decent pictures of the disease
since i never saw one , except mine, i cannot rate my condition as good bad or bad bad

take care and thanks for your great support

greg
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: didi20031 on January 14, 2009, 06:37:04 PM
greg

there is a german website with a few photos:

http://www.induratio.com/page.php?12

the password for the site is "induratio"

the first photos show a plaque which has been removed surgically.
then:
- 1 photo of a patient in stable phase (before surgery)
- 4 photos that show one patient january 07 / july 07 / october 07 / january 08
- different web pics

didi
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on January 14, 2009, 07:23:35 PM
Make sure you click the submit button. Entering the password and just hitting enter won't do it.

Also there is a "classic" picture of Peyronies Disease on Wikipedia.
http://en.wikipedia.org/wiki/Peyronie%27s_disease (http://en.wikipedia.org/wiki/Peyronie%27s_disease)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on January 14, 2009, 09:07:24 PM
greg:

There are several web sites around the world that have many penis pictures. Check out this site:

www.ejacu.com

It has pictures of penises in all sizes, shapes and configurations.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: default87 on January 19, 2009, 08:40:37 PM
Hello everyone, I'm new to this forum and I'm pretty sure I have corporal fibrosis as a result of taking Propecia for about 18 months. 

It happened gradually, and at the time I had a LOT on my mind (was pretty depressed, bad relationship,etc) and I didn't notice it until it was too late.  I'd say the fibrosis occurred between months 5 and 15 at least, maybe 5-10 or something, with the worst of likely happening between 5-8.  At any rate at the 15th month mark I suddenly realized I lost .5 inches off length, and a whopping 1.25 inches off my girth (luckily I had measured at the 5 month mark).  Coupled with other effects of Propecia, the whole ordeal has been devastating.

I didn't quit Propecia until a few months later, since I didn't know what caused my shrinkage.  However, from when I first noticed the shrinkage until now, girth hasn't changed one bit, meaning once it got to a certain point it did not get worse even though I was still on Propecia.

I've searched the web countless hours trying to find hope, and I don't know what to do.  I've read that fibrosis is reversible from some sources, that it's not from others (probably more).  To combat it I take 50 mg of Viagra nightly along with 400 IU of Vitamin E and 50mg zinc.  Since quitting propecia, erections have gotten better, but not size.  It's been over a year since I first noticed the size difference, and I haven't had sex this entire time (I'm 21 and in college).


My question is this:  Is fibrosis reversible or not??????   I would be ECSTATIC with just HALF of my girth back (I was fairly well endowed before and can live with being average just fine).  I'm just so sick of living like this, I just want my old self again.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Bob22 on January 19, 2009, 11:03:34 PM
Default:

try taking viapal -J found on actionlove.com along with vip cream and fish oil pills with every meal, also 5 grams of L-arginine and 1000 IU Vit E.  I think you will find this helpful, report yours results back here.
Title: Re: Bob22
Post by: Hawk on January 19, 2009, 11:20:30 PM
Bob22,

I think of all the reputable sites you could have mentioned, you entirely missed the target when you mentioned that one !

Title: Re: default ...
Post by: George999 on January 19, 2009, 11:40:57 PM
You are coming here asking for help with corporal fibrosis when you don't even know if you have corporal fibrosis.  Only a doctor can correctly diagnose your condition.  I suggest you go to a real doctor and find out what you actually have and THEN come back here and maybe we can offer some further suggestions.  The fact that Procepia is associated with fibrosis problems does NOT mean that it causes fibrosis problems.  People who have fibrosis problems generally have those issues because they have underlying metabolic problems which prescription drugs and even supplements and certain foods can aggravate.  You ask if fibrosis is reversible.  The reason you are hearing different responses to this question is because different people, even different doctors have differing opinions on the matter.  But until you get checked out by a doctor, you don't even know what your problem is.  So do yourself a favor and see a doctor and get a proper diagnosis.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Bob22 on January 20, 2009, 12:50:07 AM
Hawk I disagree, I've used them and wholeheartedly felt that they worked a lot for me.  I bet a doc would just give him a script for ED meds and say theres nothing else to do.  Might as well try something. 

Also let me tell you my story. I damaged my penis a couple years ago I had ED and shortening along with significant lack of overall elasticity but I didnt or dont have a curve.  I have never seen a doc but assume scar tissue was and still is my problem, however I used these products and my condition improved dramatically, certainly not 100%.  That is why I suggested them.  What is your knowledge of these products?
Title: Re: Bob22
Post by: Hawk on January 20, 2009, 11:53:25 AM
Bob,

You are free to disagree.  However, I can think of few things more irresponsible than for someone to self-diagnose, then self-treat from internet sites without ever seeing a doctor.  That is doubly true when they do so from a site with no professional restrictions that is established solely to make money for the site owner.

The particular site you mention has every warning mark of snake oil sales.  It is based on testimonials with no clinical trials, it is sensationalistic, it is operated for money, it relies on the credentials of someone whose credentials and reputation cannot be verified other than on his site.  The site is full of disclaimers like
QuoteThis statement has not been evaluated by the Food and Drug Administration.  It is based upon our customers' experiences.  This product is not to intended to diagnose, treat, cure or prevent disease.

This guy gives no explanation of how it came to be that he has found all the secret combination of ingredients that have avoided other researchers.  He provides NO body of evidence.  Possibly he just woke up with inspiration to dump a little of this and a little of that with some eye of newt in a blender and by shear luck it was the perfect formula.  How did he know it worked? Because it was fully substantiated because "she said the moment she put the cream that was miraculous for his penis, on her clit that she felt instant super charged engorgement" (presumably this was after he sold it to her prior to getting any testemonials)

He sells ingredients with known dangers like Yohimbe Extract.  Furthermore he expects people to fall for the concept (and they do) that these ingredients are actually present is some quantity with no impurities and that they can be absorbed by the skin to provide therapeutic effect.

It would truly be difficult to search the internet and find a better example of what to avoid.

I thank you for presenting the opportunity to alert others.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Attica! on January 20, 2009, 06:26:05 PM
   Hawk,
   As usual, you are the master of decorum. May I say, a bit less tactfully than you, that the actionlove web site is the biggest load of BS and crap-ola that I have ever read. What a bunch of huckster hooey. How could anyone go to that ridiculous and visually-assaulting web site and assign it any credibility?
   Also, with regards to Greg wanting to see pictures of Peyronie's. Could someone please go to the Wikipedia page, look at the picture and tell me what the degree of upward curve is? That is what mine looks like and I would like to be able to say how much curve I have. Thank you.
Title: Attica/Wikipedia
Post by: Angus on January 20, 2009, 07:50:54 PM
 The picture at Wikipedia shows a man with a 45 degree upward curve. Looks familiar... I used to have one but it was 45 degrees down and to the left.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on January 20, 2009, 08:12:13 PM
Attica:

Will just jump in here and give you the benefit of my experience with measuring curves/bends of Peyronies Disease. When I wanted to get the degree of curve that I had my uro told me to get a natural erection (if I could and I did) then observe what position my penis was in with relation of sticking straight out as a reference point. If it went downward use that as a starting point, then using a degree protractor measure the highest point my erection was up or down after getting Peyronies Disease. The angle of change produced this way would give you some idea as to how many degrees of curvature/bend you developed after getting Peyronies Disease.

IOW, remember what position your erect penis was before Peyronies Disease and then observe what position it was after Peyronies Disease, whether up or down. Use the same procedure to measure any right of left curves/bends.

In my case, mine stuck straight out with a natural erection before Peyronies Disease. After Peyronies Disease, it stuck downward about 45 degrees and about 45 degrees to right of straight out, etc. So, my curve had resulted in those degrees of change from natural.

Maybe the above will help. If you have questions, just let me know.

Regards, Old Man

PS: If you want to get an idea of how many different sizes, shapes and forms penis take, take a look at this site:  www.ejacu.com

It could be considered porn, but the intent of that site is to infom it viewers about penises in general.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on January 20, 2009, 10:02:57 PM
if i dont feel any pain - does this mean that I am getting better????
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: default87 on January 21, 2009, 02:27:36 AM
I should have clarified, I went to the doctor some time ago, about 6 months, and yes he more or less brushed me off and gave me a free sample of Levitra (did nothing).  I, like many of us over at propeciahelp.com have learned that the majority of doctors are pretty clueless in this area and unwilling to admit propecia could have such severe side effects.

I've spent a great deal of time trying to put a name of my condition, and research has led me to corporal fibrosis.  There are studies that show Propecia can lead directly to fibrosis due to its action, I believe Mew posted many of them a few pages back.

I haven't found anything that could possible describe the consistently dense, narrow, rubbery feel my penis has taken more accurately than the descriptions of fibrosis.  If you could tell me what other condition this could be confused with I'd very much like to know.

The worst thing about the side effects from Propecia is that no, we DON'T know entirely what our problem is, and we encounter resistance from the medical community every step of the way.  Which is why I am here.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: didi20031 on January 21, 2009, 04:54:29 AM
Iceman
I hope so!!! I am experiencing the same "phase" of the disease as you do...
Regards,
didi
Title: Re: defualt ...
Post by: George999 on January 21, 2009, 12:14:19 PM
default,  I don't think that diagnosing any sort of fibrosis is rocket science.  I think it simply involves an ultrasound in skilled hands.  In any case, you are going to need to go to a doctor for treatment anyway if you hope to improve your condition.  But it is going to have to be a doctor who specializes in these kinds of problems.  Perhaps if you could tell us what part of the country you live in someone here could offer a suggestion.  Personally, I DO believe these problems CAN be reversed.  BUT you have to understand, reversal is NOT a cure.  But first you need someone willing to do some REAL investigation and come up with some real answers.  You ask what this could be other that corporal fibrosis.  My answer would be that a really severe case of Peyronie's can be virtually impossible to distinguish from corporal fibrosis without a tool like ultrasound.  That is why doctors use such tools in the first place.  In ANY case, if you really want to start dealing with this now, I would talk to Old Man about acquiring and using a VED.  That would probably be more helpful than anything else for your current situation as you are describing it.  But in the long term you need to know what you are dealing with and get further help.  Vitamin D and Pentox are also very good approaches.  I would certainly make sure your vitamin D levels are good (>50ng/ml) because if they are not, they can cause you other problems that might be far more serious than corporal fibrosis.  - George
Title: Re: Open Questions on Peyronies Disease / feeling no pain
Post by: Old Man on January 21, 2009, 03:28:48 PM
Iceman:

It is according to where you are experiencing pain or no pain that determines if it is noteworthy or not with Peyronies Disease. If the pain occurs only during certain events like getting erections, using the VED, manual stimulation or any form of exercise of the penis, that should send up red flags. It it occurs all the time no matter the events, that would be another ball game.

This event would be cause for getting professional help and fast. Each individual has a different threshold of pain or tolerance of it, so I would say that there are not set rules to determine the level of pain from one individual to another. Each person would need to set their own guidelines for their level, etc.

Whether or not absence of pain means one is getting better, that would be a good question. Only the individual would have the answer to that based on whether or not the symptoms are reduced accordingly.

Hope this does not add to any confusion about penile pain.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Bobby Magee on January 21, 2009, 11:13:08 PM
I had the coincidence to speak to 2 men at my urology office yesterday , and a few of my sentiments were timely answered  , I have had difficulty navigating or trying to navigate this SITE since I joined months back , the 2 men I spoke to shared my view , I,ll explain in 2 Stages , 1) Im nervous to a degree since I came to realize I am inflicted with Peyronies Disease.  so my patience is limited , I know , but this site seems to beat around the bush to often , finding a heading to just share my daily journey,  and experience has been plain trying , Hawk you told me the other day you changed my input to another place as it was not properly directed , I said Okay , where the heck did you put it , so I can get some feedback , also you as the prog. moderator , or what ever also included a sign to delete directed only to my post that day , Why ???  you personally did not agree with me or I didn,t sound , please explain , I don,t take to much personal , as I,m well aware someone elses view on  a matter is not always mine , I see time and again a few long time members rule the roost so to speak as if this is their platform and that is that , my 2  new friends spoke first yesterday , so I  injected  after ,  2) where are the newcomers as I am , If you would let me share outlook , you don,t have many , it took many hours for me to find any type of direction to get recent outlooks , I work on the computer  several hours a day for years doing certain tasks , this is a difficult format , a little advice from a caring , compassionate , brother on the same boat as you guys are , SIMPLIFY , get off the high and know all the answers  platform and be inviting to the newcomer , ALL SELF AWARENESS , ADVICE , offering PROGRAMS profess the NEWCOMER , is the most important person needing help and direction , ......I,m well aware of the time and effort you folks have put into this Program , so some advice from another Sick and Suffering Victim , (and hopfully on some plane of recovery , thanks to you guys and others like you , SIMPLE , EASY , Hopefully my input will be healthily accepted , I,m not quitting Peyronies Society , I,m not that way , I,m sharing a view of 2 strangers I met yesterday , and some of my own personal as well , GOD BLESS all you GUYS , Bobby
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: default87 on January 22, 2009, 03:13:43 AM
George,
It's interesting that you mention Vitamin D, as I did have a clinical deficiency last summer, which I would guess was caused by excessive drinking (like I said I was depressed at the time) and inadequate sunlight, even though I drink a lot of milk.  I believe it was around 29ng/ml with normally healthy range being 50-100.  I've been taking supplements and lead a much healthier lifestyle now.  Is vitamin D deficiency commonly noted for these problems, or is this just your own personal experience?  At any rate I doubt I still have the deficiency but I probably should get tested.  Pentox would be good to start as well, but I imagine I'd need an Rx for that, correct?


You say reversal is not a cure.  Does this mean that treating the underlying cause (in my case something due to Propecia) would result in a natural reversal of fibrosis?  This would be good news to me, as I believe I will overcome most of Propecia's effects over time (like within 2 years, based on other testimonials).  I will likely still get the VED to gain some size back, so that waiting for further improvement will be more bearable.

Thank you for your help.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on January 22, 2009, 10:56:12 AM
Bobby Magee:

This forum is not difficult to work with in any way. You just have to learn the protocol for how it is set up. When you log in, go the link to the discussion forum. There is a total list of all the topics/threads with the exact heading of how each post to them should be addressed in any posting a reply.

Experiment with clicking of the various links to get uised to how you find things. Most are self explanatory. And, if you have specific questions, just ask and most any of us can direct you to the proper one etc.

Hawk usually relates the topic that he moves a post to so that it applies to the right topic. Sometimes, in his work schedule, he may not do that, so just browse around the topics until you find it,

If you need further help after doing the above, feel free to ask.

Old Man
Title: Re: default ..
Post by: George999 on January 22, 2009, 01:28:19 PM
default, Vitamin D deficiency/insufficiency is being demonstrated by research to be the underlying cause of a whole range of problems.  Vitamin D directly affects both gene expression and hormones.  Its functions are crucial.  Deficiency is not something you want to fool around with.  Vitamin D deficiency has been directly linked to autoimmune issues which are in turn linked to fibrotic processes.  To put it in a simple way, when tissue becomes inflamed and that tissue lacks a sufficient amount of vitamin D, an autoimmune process begins.  Cytokines are released damaging healthy tissues which creates further inflammation and the process becomes an endless loop.  The natural damper on this is vitamin D.  But serum levels of vitamin D have to be raised to over 50ng/ml before they begin to spill out into the tissues.  This process can be bypassed somewhat in the case of Peyronie's through the use of exposure to UVB spectrum light.  I have experienced some success with this over time with a 5 minute per day exposure to fairly intense UVB.  For a long time I was unsure how effective this technique would turn out to be, but now I am becoming more confident that it is helpful.  The only way to actually know what your vitamin D status is is to get tested.  At this point, I have a test kit actually sitting in front of me.  They can be obtained through the Vitamin D Council (http://www.zrtlab.com/Page.aspx?nid=12&action=view&category=14&partner=VitaminD%20Council) for $65 by anyone NOT living in the state of New York.

Pentox DOES require a prescription, but finally, more and more urologists are willing to prescribe it.  It is VERY inexpensive and serious side effects are fairly rare although more than one guy here has been unable to tolerate it.

Reversal is not a cure in that, though your condition is likely to improve, it is extremely unlikely that it would go away altogether.  But reversal is definitely better than progression in my book and I would even settle for a cessation of progression.  I am extremely grateful to be experiencing reversal.

As I said before, I am sure Old Man would be more than willing to help you on the VED side.  Use of the VED is perfectly compatible with Pentox and Vitamin D and would likely only enhance the benefits if used wisely.  - George
Title: Re: Bobby Magee
Post by: Mick on January 22, 2009, 01:53:15 PM
Hi Bobby:

Your post on "Awareness and Advocacy" was moved to "Open Questions."  You will find it there with a number of replies.  It's reply # 1073.  To find one that has been moved without knowing where, you may find it by going to the author's profile (in this case yours) and clicking on "See recent posts by this member" which is found near the bottom of the page.  Hope this helps.

Mick
Title: Re: Bobby McGee - Forum Rules on Deleting or Editing a post.
Post by: Hawk on January 22, 2009, 05:06:33 PM
BobbyMcGee,

I will send this to you in a personal message to make sure you see it but I post it here as an open response to your questions.

This forum and the PDS was established because of a passion to give members a voice and forum FREE of censorship.  It has prospered in large part because there was no moderated forum in existence that was free of censorship. This forum does not delete or edit posts based on my opinions or the opinions of the moderators or advisors.    I have had lively even heated arguments with those I absolutely disagree with but have never deleted a single word of such a post and NEVER will. 

I have NEVER deleted a post on the basis of my disagreement with that post or because it was poorly written or off topic.  I move less than 1% of the posts here and do so only to put them under the topic that relates to what is being discussed. 

Per forum rules, the only time I EVER delete a post is:
If it is a duplicate post - If a member made the same post two times.  Sometimes people double post by error in the same topic one post right after the other.  Sometimes they deliberately post the same post in more than one topic.  I delete one of those double posts and leave the other.

On occasion I delete posts that just no longer apply such as: In the middle of a discussion on surgery a member may post that he wants to delete his post but cannot.  Other members may say "send Hawk a private message for help".  They may say "we used to be able to delete but now we can only change our posts".  When I read such, I will delete the post as requested and also delete the responses since they now make no sense to the reader with the original post gone. Even then I usually only delete my posts or technical assistance posts of other forum moderators.

If a member clearly violates forum rules I may delete their post after warning them but out of thousands of posts this has only ever happened once. 

Editing posts:  I edit subject lines on posts.  Very Rarely I will correct a word on a post if it makes it difficult to read and I feel that I know the author well enough to know they would appreciate me making the correction.  The same is true if the word "NOT" is left out and changes the entire post.  I ALWAYS contact the author and let them know in case I misunderstood their post.

Hawk.

PS: We are here to knock ourselves out helping you navigate the forum.  If I did not want to help I would not have undertaken this project.  Feel free to contact me any time and I will do what I can as soon as I can.  That includes walking you through the forum over the phone if necessary.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: nemo on January 22, 2009, 11:26:36 PM
Thanks for being a great Admin Hawk, and for all the time you invest in this forum.

Nemo
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on January 24, 2009, 04:47:06 PM
I have gotten several messages that demonstrate that some cannot or have not yet learned how to navidate the forum. The last message I got was an email that was "flagging" a message - talk about not responding appropriately!

Perhaps we should make up a document to guide newcomers on how to use the site, including screen shots, etc, so that they can go there to learn how to get around first, and then start posting messages.

That said, there are always going to be those who struggle in the electronic medium, no matter how much help they get.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on February 02, 2009, 08:02:50 PM
does anyone think that it is necessary to see my uro next week as i do not think he will have anything new to say - i mean what new light can he shed on the topic and what can he offer me other than 5 minutes at the end of his long day...its just a boring , time wasting exercise - could be better spent down at the beach

all thoughts are appreciated as I am about to make the call to cancel the appt...
Title: Re: Needle Risk? Ultrasound?
Post by: Thin Man on February 02, 2009, 10:48:02 PM
I'm wondering if anyone has any advice for me about getting an ultrasound.

I have a justified fear of needles being stuck in my penis - that's how I got my injury to begin with. As patient of Dr. Irwin Goldstein I had a microvascular bypass done in 1995 for erectile functioning due to arterial blockage. In one of the tests leading up to surgery, two large needles were stuck into my penis towards the distal end, just behind the glans. The resident had some difficulty with the needle on the left side and had to stick me four times to get it right. It was extremely painful. Later I developed a hard lump in that spot which Dr. Goldstein assured me would go away. It didn't. About nine months later that's where my scaring began. Over two years diffuse scarring spread to about half my penis, resulting in decreased circumference and sensitivity, although lucky for me very little curvature. My injury suddenly worsened about 10 weeks ago from carelessness on my part - I was using an erection ring while experimenting with a very low dose of Cialis (which wasn't working that well for me obviously). Huge mistake, please don't do this. I had a very painful ejaculation and immediately developed an hourglass deformity about mid shaft, further narrowing of the distal half of my penis, and some shortening, still no curvature, but greatly reduced erectile and ejaculatory function which I hope will improve.

Anyway I finally, finally, FINALLY! (after begging and pleading for an earlier appointment to no avail) get to see Dr. Hunter Wessels on Thursday. I'm fairly sure he'll recommend an ultrasound, since my injury is unusual. I'm told the needle used for this purpose is quite thin and risk for damage is minimal. Still, I'm not too crazy about anyone putting a needle in my penis for any reason.

Has anyone had good or bad experiences from this procedure?

Are there options I should know about? 

Has anyone had a similar injury? 

Sometime when I get enough energy I'll write a more detailed history for the curious. Right now it's taking all my time and energy to investigate treatment options and stave off depression.

Many thanks,

Thin Man
Title: Re: Thin Man - Advice on injection for ultrasound test
Post by: Hawk on February 02, 2009, 11:42:04 PM
Thin Man,

You will have to make a decision on this.  Several people on the forum will tell you they would avoid that injection.  Several have had it and will tell you that the shot caused no problem and the data gained was useful.

I too believe that injections of ED drugs caused my Peyronies Disease.  That being said, I gave myself about 75 injections over an 8 month period.  If I were in your shoes, I would probably get the single shot.  It is painless and close to the smallest gauge needle made (insulin needle). 

Whether anyone else tells you this at the appointment or not, use the thumb and forefinger to APPLY DIRECT PRESSURE TO THE INJECTION SITE FOR 5 FULL MINUTES.  This just reduces any risk of minor bleeding in the penile tissue.  Whole blood is an irritant to tissue and can reportedly cause scarring.  Pressure application after trimix or bimix injections is STANDARD protocol.

After applying pressure, relax and let the injection do its job.


Good Luck
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on February 03, 2009, 05:29:57 AM
Thin Man
Wow what a story!
I also had an injection for my Color Doppler. It was painless and did not think much of it at the time. The diagnosis was venous leakage. The "doctor" offered me trimix and I tried to use it for about a year. Those injections lead to scaring in my corpora's (corporal fibrosis) which made things worse.
Take Hawk's advice and hold pressure for 5 minutes. Yes I would let them inject the small amount of PGE1 for the test but that us all.
Lots of Luck and let us know how the procedure turns out.
Jackp
Title: Re: Ultrasound Injections
Post by: jackisback on February 05, 2009, 01:32:01 AM
Hawk,

Let me make sure I understand your directions crystal clear. Press on the spot where the needle went in with one finger while pinching on the other side of your penis with the other finger (or thumb) to hold pressure, right?  I'll be getting an ultrasound in a few months, and I just want to make sure that I do this right. The last thing I want is more Peyronie's. I'll want to get this right, even if I have to get you to explain it to me over the phone. j/k :)
Title: Re: Direct Pressure after Ultrasound Injections
Post by: Hawk on February 05, 2009, 08:09:34 AM
Quote from: jackisback on February 05, 2009, 01:32:01 AM
Hawk,

Let me make sure I understand your directions crystal clear. Press on the spot where the needle went in with one finger while pinching on the other side of your penis with the other finger (or thumb) to hold pressure, right?

You are exactly correct with the method.

Hawk
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Danztheman on February 07, 2009, 02:57:35 AM
My results of having the grafting surgery 12 weeks ago today has been for the most part, successful.  It is a slow recovery process because the nerves take time to regenerate.  I was able to have intercourse and oral sex 6 wks after surgery and my penis, which was at about an eighty degree angle is once again straight.  I have lost about 3/4's of an inch of length and am using the Fastsize during the recover period to hopefully regain sosme of the lost length.  Because of some lost sensation, which hopfully will come back, I have been using Viagra and Cialis to have more firm erections.  My Urologist has put me on a daily therapy recovery plan of using the Soma pump to create erections for 3 minutes and 20 minute warm water soaks plus vigorous 5 minute messages of the penis with Vitamin E.  For the first 2 months or so, I was getting shooting pain on a frequent basis because the nerves are regenerating.  Now after nearly 3 months, I still get the shooting pain but not as often.

For anyone considering the surgery, the recovery process takes time.  My Urologist says it can take 6 months to a year to get the desired results.  So be PATIENT!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Hitman on February 07, 2009, 10:04:23 AM
just of curiosity are you using Vitamin E oil or cream
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on February 07, 2009, 02:09:02 PM
Good for you Danztheman!

Hang in there - sounds like you have come a long way. I wonder (out loud) if a bit longer with the VED and less vigorous massage would be overall less traumatic to the penis and more likely to lead to improvement...

Tim
Title: Resources for Doctors Specializing in Peyronies Disease
Post by: alexnden on February 09, 2009, 12:31:37 PM
I was diagnosed with Peyronies Disease last year and have been seeing a doctor that I don't feel is all that "legit".  Everything he prescribes is not covered by insurance, but can be purchased from his office.

When I search online, most urologists don't seem to specialize in Peyronies Disease.

Any suggestions where I can find doctors who do specialize only in Peyronies Disease?

???
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on February 09, 2009, 05:10:37 PM
alexnden
When I was first diagnosed with Venous Leakage the doctor sold me trimix out of his office. It had to be cash. I do not think that is legit.
I switched doctors and he wrote me a prescription for trimix and where to git it filled. When I compared the cost the doctor was making about a 1000% mark up.
After my experience with trimix for ED. It caused corporal fibrosis and made my condition worse. Do Not Stick A Needle In Your Penis For ED Shots!! :o
Jackp
Title: Re: Jackp
Post by: ComeBacKid on February 10, 2009, 06:08:59 PM
Jackp,

I've always believed sticking a needle into the plaque can't be good.  Our own PDS verapamil injection survey reflected that in a way, showing that verapamil injections weren't very effective.  There was some talk of the "lariche" technique being effective in europe, where they just use a needle and inject it into the penis to break up the plaque.  Apparently that didn't become to popular, you don't hear much about it...

Comebackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: alexnden on February 11, 2009, 12:43:58 AM
Quote from: jackp on February 09, 2009, 05:10:37 PM
alexnden
When I was first diagnosed with Venous Leakage the doctor sold me trimix out of his office. It had to be cash. I do not think that is legit.
I switched doctors and he wrote me a prescription for trimix and where to git it filled. When I compared the cost the doctor was making about a 1000% mark up.
After my experience with trimix for ED. It caused corporal fibrosis and made my condition worse. Do Not Stick A Needle In Your Penis For ED Shots!! :o
Jackp

Thanks Jackp.  I have since stopped going to my doctor and am looking for another.
Title: Urinating with peyronies disease
Post by: ComeBacKid on February 14, 2009, 11:18:13 PM
Has anyone here noticed sometimes it is harder than normal to pee, or especially with a semi-erection your urine does not come out straight but comes out to the side?

Comebackid
Title: Gay men and Peyronie's Disease
Post by: nycjake10002 on February 15, 2009, 10:34:38 AM
Any other gay men out there suffering with this? I'm having a really hard time and would like to know if there's anyone else out there who can understand what I'm going through.

Thanks in advance,
NYCJake10002
Title: Re: Thin Man - Advice on injection for ultrasound test
Post by: nycjake10002 on February 15, 2009, 12:10:00 PM
Quote from: Hawk on February 02, 2009, 11:42:04 PM
I too believe that injections of ED drugs caused my Peyronies Disease.  That being said, I gave myself about 75 injections over an 8 month period.  If I were in your shoes, I would probably get the single shot.  It is painless and close to the smallest gauge needle made (insulin needle). 

I too think that an injection of cavorjet(sp) is what caused my Peyronie's. Good to know that other people have experienced something similar. But how can one know for sure?


Quote trimmed down per forum rules - Hawk
Title: Re: Nycjake
Post by: ComeBacKid on February 15, 2009, 02:42:07 PM
Nycjake,

I'm not gay myself but I do have a good friend who is gay.  Hes from canada but knew right away what peyronies was.  I think when it comes to females they have no clue what peyronies is, heck I didn't even know what it was before I got it!  Some chicks may just see it as freaky or a bent messed up penis.  Where as at least with probably a lot of gay men they are away that it is a disorder.  Whether your presenting your bent member to a female or male, it really doesnt change the situation a while lot, do they still love you for who you are?  Most porn stars even have a slight curve on their unit, this is pretty obvious the more I saw of them. Maybe someday a slight curve might be the in style  :D

Comebackid
Title: Re: Gay men and Peyronie's Disease
Post by: Tim468 on February 15, 2009, 05:06:51 PM
We have gay members, some of whom are not "out" to the forum. When we talk about our partners, we need to recall that the pain we feel and our partners feel is not dependent on being straight or gay.

And, while we often point out that many (most) women are looking for more than a perfect penis in a relationship when we try to encourage young men in despair, we need also remember that many gay men are also looking for more than a perfect penis in a relationship.

I hope that this community will be every bit as supportive and welcoming as you need.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on February 15, 2009, 06:20:17 PM
When I went in for my initial ultrasound, I received an injection to cause an erection. This was done with a very small gauge needle. The doctor said nothing about needing to apply pressure, just to lay there and let the medicine do its work. I had no problems or ill effects from this.

Later, however, I did start a round of 6 VI injections. Dr Levine always cautioned me to hold pressure for 5 minutes afterwards. This is because this is done with a larger gauge needle. I don't know needled gauges but for sure was bigger. And even after holding pressure I would still but somewhat swollen later and bruised.

So the pressure indeed will help, but I don't think anything will totally eliminate the swelling and bruising from VI and/or Xiaflex injections.
Title: Doppler while flaccid...
Post by: ComeBacKid on February 16, 2009, 12:42:12 AM
Why not request a doppler radar while flaccid, why does an erection have to be induced, common sense says putting a needle in your penis will just create more scar tissue.  A handfull of members said trimix injections have made their condition worse.  A doctors first objective is to do no harm, a doppler isn't absolutely needed to monitor progress, maybe for "data," but I monitored my own progress without this.  I wouldn't stick a needle in my penis, and I wouldn't recommend anyone else do it.  You can induce an erection with the VED if you need one.

Comebackid
Title: Re: Gay men and Peyronie's Disease
Post by: nycjake10002 on February 16, 2009, 09:10:39 AM
Quote from: Tim468 on February 15, 2009, 05:06:51 PM
We have gay members, some of whom are not "out" to the forum. When we talk about our partners, we need to recall that the pain we feel and our partners feel is not dependent on being straight or gay.

And, while we often point out that many (most) women are looking for more than a perfect penis in a relationship when we try to encourage young men in despair, we need also remember that many gay men are also looking for more than a perfect penis in a relationship.

I hope that this community will be every bit as supportive and welcoming as you need.

Tim

I need to write something about being put under this classification. This disease is different for gay men. I really needed to feel understood by them. Certainly there are things about this disease we can all relate to but I do not believe a straight man is going to understand what i'm going through the same way a gay man would. And if there are other gay men out there going through a hard time who need someone gay to speak with then I think there should be that distinction. So I'm disappointed to see that my topic was placed under "Open Questions on Peyronies Disease (That won't fit under any of our current topics)" It only gives credence that you do not understand.

NYCJake
Title: Re: NYCJake
Post by: Hawk on February 16, 2009, 11:09:41 AM
Jake,

Your posts were moved because members are not allowed to create new topics on the Peyronies Disease forum, only in the "Off Topic: area.  That has been the rule for all members from day one of our forum.  We do have a topic specifically for making suggestions or requests for new topics.  Topics with a popular demand or that can be expected to get regular posting will be considered if they do not overlap topics already in existence.

I may be missing something but we have had several members that were openly homosexual.  They all seemed to flow with the discussion on all of our topics covering treatment and causes of Peyronies Disease and ED.  We make no distinction between homosexual, heterosexual, married, or single, since these issues are not our focus.  The condition is our focus.

Regards
Title: Re: Off Topic Area ...
Post by: George999 on February 16, 2009, 11:27:49 AM
I would re-emphasize Hawk's mention of the off-topic area.  This area is wide open to new topics.  The main area, however, is restricted to major Peyronie's themes that attract large numbers of on-topic posts, plus a few more multi-purpose threads like this one.  As Hawk indicates, this has been the rule since day one around here and most of us have had topic suggestions dumped over into the off-topic area.  So no one is being "picked on" in this case, its just a case of longstanding policy.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: nycjake10002 on February 16, 2009, 11:39:21 AM
Luckily I did receive 2 emails on my private email when the gay subject was separate. For me personally it meant a lot to me. One of these men in particular has a similar history with it that no straight man could relate to. I don't mean to be difficult, but there are some cultural differences that do affect/effect us in a different way. I was hoping to feel less alone in the world. Something happened in my relationship this past week that really took the wind out of my sails. I do not think that a straight man can relate to this in a way a gay man could/would.

In my opinion it would be helpful for us gay men to be able to communicate with one another, probably thru our private email addresses and someone who's gay and new to the disease might be more comfortable writing to another gay man and therefore feel safe.

Thanks for listening,
NYC
Title: Re: NYCJake
Post by: Hawk on February 16, 2009, 10:10:32 PM
Jake,

I still am at a loss.  A gay guy can see and respond to your post as clearly on the standard topics as he can on a topic called "gay...."  .  Why would 'where he responds' on an open forum affect your ability to communicate? Are you asking for a private topic visible only to those that declare themselves to be gay? Or possibly are you asking for a topic that only gay members can respond in ??? Our topics deal with treatments of a mechanical, oral, surgical nature.  These topics all deal with studies, scientific, or rational thoughts on what may work as a treatment.  If you discuss VEDs, you can discuss that on our VED topic etc.  They have nothing to do with sexual orientation.  We do have one topic on Psychological Aspects".  Post what you want there concerning coping with such aspects.  Label it as you choose as long as it is not graphically tasteless (regardless of sexual orientation).

Additionally, you can make a topic for non-treatment issues in the "Off Topic"area of the forum. Feel free to label it 'Gay Men" or any such title YOU choose if you do not want to use the common "Psychological Aspects" topic. Every one that has psychological issues have unique issues.  Young, old, married, single, virgins, sexually addicted, suicidal.  We do not all share every aspect of another's struggles but we respectfully listen and contribute if we feel we have something meaningful to share.  That would be the same if there were 10 separate psychological aspects topics. We are not interested in trying to segment or segregate people into categories.

Additionally you can have any mutually acceptable conversation you want by secure personal messaging without furnishing email addresses.  I feel this pretty much covers every tool you need to freely communicate which anyone you choose on any topic you desire.

Hawk
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: benjic on February 18, 2009, 06:26:48 PM
Hi there - I am new to this site and was just trying to work out how to post a message and I saw your question.

I have had this type of treatment in the UK. Its called Lithotrypsy and indeed it is used to break up kidney stones. It feels like someone flicking a heavy ruler on you for 10 mins. I had 3 treatments spread out over 3 months with mixed results. My curvature has started to ease - but I am not sure as to whether its as a result of the treatment or the fact that it has just stabilised.

I am glad that I did it though.

I would like to get some facts on the nesbit technique.

All the best.
B
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Iceman on February 18, 2009, 07:58:39 PM
ive been feeling a bit of pain in the past 2 to 3 days and have not had this for about 3-4 months - whats happening???

I have reduced my intake of ALC - could this be a contributing factor amongst the many variables??
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on February 18, 2009, 08:02:55 PM
Hawk,

Although I think that Jake may be missing something here (which I am not articulating well, but in a word, what we suffer from makes gender orientation/preference less relevant than our shared experiences of pain, self-doubt, etc), he does raise a valid point. Apart from the simple aspect regarding the "rules" of which he was unaware, there is a precedent for what he is saying. Remember our creation of the Women-only posting section?

Jake, I really do not know what you mean when you say "I need to write something about being put under this classification". It came in connection with a quote from me you copied to your post, that does not, IMHO, place you into any "classification". Are you instead referring to the movement of your post from one area to another on the forum? If so, I assume that you now understand why we have structured things that way. We have generally tried to make it impossible to create now categories to prevent the board from becoming cluttered with new folders that obscure the broader mission of the board. Despite our attempts to prevent the formation of new topics, the formation of new folders continues.

That said, although I think that you might be missing out on what makes us all more alike than different (and because of that missing out on being able to share), I can certainly see how it might feel uncomfortable to talk about a gay-themed emotion or activity on a predominantly heterosexual board. So, for sharing feelings, it makes sense to me that you might feel held back or restricted.

OTOH, if you want to share or learn about what to do to try to get better, then it really does not matter where you place your penis during sex, or whether a supportive (or non-supportive) partner is same-sex or opposite-sex. You might be surprised at the degree of openness and willingness to share here. It feels pretty non-judgmental to me.

Also, as you stay here (and I hope that you do!), you will learn about all the different paths that we have taken to get to this mess, and what we did (or think we did) to get there. From a pragmatic standpoint, then, I will read opinions here that are willing to take a stand, despite being a bit non-PC. For instance, if a guy has Peyronie's and wants to use cock-rings to enhance his erection, or use a VED until he is boggy with edema, he will hear from us that such a practice will make his Peyronie's worse. That may verge on judgmental, but is focused on helping someone see what their practices might do to their penile health.

Finding ways to get better here with this disease is what this board is all about. If creating a Folder called something like "A Gay Man's Perspective" or something may be of help, then no one here would say that will "never" happen. Perhaps even a closed board. But my experience with women posting here is that when they were here, they were sometimes marginalized or treated paternalistically. Yet when we created a "For Women Only" sub-section, the traffic died down a lot. So there are pros and cons of creating closed sections, that may form to isolate the very people we are trying to serve.

I truly hope, though, that you will hang around to see if what we do here might be of help to you.

Tim
Title: Re: Doppler while flacid
Post by: LWillisjr on February 20, 2009, 03:58:52 PM
QuoteWhy not request a doppler radar while flaccid, why does an erection have to be induced, common sense says putting a needle in your penis will just create more scar tissue.  A handfull of members said trimix injections have made their condition worse.  A doctors first objective is to do no harm, a doppler isn't absolutely needed to monitor progress, maybe for "data," but I monitored my own progress without this.  I wouldn't stick a needle in my penis, and I wouldn't recommend anyone else do it.  You can induce an erection with the VED if you need one.

Comebackid

Comebackid,
There is a secondary purpose for the ultrasound in addition to examining for plaque. The ultrasound also measures bloodflow and adequacy to achieve and maintain an erection.
Title: Concerns of the forum structure
Post by: LWillisjr on February 20, 2009, 04:27:28 PM
Hawk,
I think I understand what some people are trying to express here. Even now, I'm tyring to reply to a comment from Combackid, and I feel like I am posting in the middle of an important discussion started by NYCJake.

There doesn't seem to be a way to reply specifically to someone's post, and it end up in the middle of another topic within the same thread. That is why now I see that some post the original quote in their replies so that the follow up post makes sense.

I am NOT being critical. I very much support this forum and thank people like Hawk for their time in managing all this. I'm just trying to better articulate what I think some have been trying to say from time to time. In other forums I think you can reply directly to someone's post and it shows up as an indented post under their message. I can't describe this any better without doing some screen shots to show you what I mean. And I'm not sure if this is a capability here or not.
Title: Re: Structure ...
Post by: George999 on February 20, 2009, 05:50:31 PM
If I can just comment a bit on this subject.  I think it is simply a matter of using good judgment.  When immediately following onto the post in question there is no need to carry over a redundant quote.  However where confusion might occur, often an abbreviated quote will suffice as an introduction.  It is a matter of simply quoting the portion of the post you are responding to without taking in the whole scope of that post.  Using visible threads with indents is another way of doing this, I post on these sorts of forums also.  They have their merits to be sure, but they also introduce other issues, like trying to sort through all of that without being able to simply scroll a bit to have adjacent posts right in front of you.  So I don't think the format is necessarily a limitation, I think it is more a question of adapting to it.  - George
Title: Forum structure
Post by: Tim468 on February 21, 2009, 08:15:47 AM
I agree with George, with a couple of caveats or other points.

If one comes here infrequently, then it is harder to follow the multiple sub-themes here. But the multiple threaded messages in the other discussed format is not much better IMX.

Another thing (this was recently experienced several times in the theme started by NYCJake), folks copy an irrelevant quote, and then respond to something else! That sort of defeats the purpose of quoting! But I felt it was likely due to misunderstanding how to "respond", as Jake does that with most replies (uses a text quote).

So, FYI, one need not use quotations in a response - once can avoid need that by using Title changes for the post (which I often forget to do)(and Hawk tears his hair out over); one can use quotes, but make them relevant to what you say!; and as a general rule, the response one posts should never be shorter than the quoted text. That is, it is silly to copy an entire paragraph and then say "Me too!". This is a long-standing "Netiquette" rule of thumb - that a post should not be shorter than the quoted text. It is a good rule of thumb IMHO.

Tim

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: kenny82 on February 22, 2009, 09:11:37 AM
Hi,

I had an injury one year ago and then the problems began.

Now i have been to some doc and he did something like a ultrasound i dont know exactly. He sad that i had a small fibrous tissue, thats what causes the bend and the hardend region on the right that i have during erection. I havent asked about the details where exactly the fibrosis was, on the tunica or inside the corpora, because the doc was really a jerk, i cant describe it but he was less then serious and i felt very terrible after the visit.

As said before my biggest problem is that the penis is always somehow big in flaccid and so in hardened state. For instance during exercise or sports i slighty get smaller but also more hardend and not small and soft like it was before the injury. That causes my biggest worries that the tiussue is fibrosing or something like that.

I am currently taking nothing fancy just VitE every day and one day or the other ALC or L Arginin. That helps slightly.

I've been trying to explain the big flaccid and hardend states to me and think that it might have something to do with the arteries. MAybe i have damaged some of them during the injury and they now are somehow hyperactive and so pump to much blood 24/7.
When i press my thumb on the top of the corpora i can really feel the blood/pulse on them with the hearbeat. That i cant remember to be able to do before the injury. Not in the flaccid state anyway.


Anyone how has experienced similar behaivour? Is there something like a test that i can get done to check the bloodflow? Most of the docs have been really bad about the whole peyronies thing and i still have to find a decent one, who may get me some answers.

Thank You
Kenny

P.S.: Dont know what section this belogs so i post it in generall.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on February 22, 2009, 12:21:17 PM
Believer:

You need to settle down and get your nerves calmed. I have had many cystoscopes done over the years and yet to have one that "hurt" all that bad. A tip about how to accept doing one: take deep breaths, hold for a second, relax and repeat this several times while the scope is being inserted into the urethra. The new flexible scopes are very easy to insert without pain or damage. There should be no reason you would have a bad experience with this procedure.

Now about the decision to have one. In my experience with this subject, (having had prostate cancer, kidney stones, bladder problems and other item), have never had any problems with the procedure. So, there were many scopes done on me for these problems. I know it sounds scary, but it really is not. Your posts state several items that do not lend themselves to a problem with Peyronies Disease. It is hardly likely that any problem with the tunica area could cause slow urine flow, nor is it possible that semen could "dry out" while in the urethra. An enlarged or infected prostate gland can and will cause slow urine flow. Also, BPH (benign prostate hyperplasia) can cause varied urine flows. These items can be determined with a cystoscope.

As has been said before, we are not doctors here, but have been through many procedures for many problems and have had the experiences of them. Having said that, IMHO, if it were my decision to have or not to have the cystoscope, I would elect for the procedure. That way, I would know for sure that my bladder, urethra and all related things in the track were OK. From your posts, it sounds like that you have a urinary track infection or something wrong in the urinary track that is causing your problems.

So, only you can make the decision, but the cystoscope would tell what, it any, problems existed in the track area.

Regards, Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Believer on February 22, 2009, 12:31:41 PM
Old Man,

Your advice, as usual, is rather persuasive! Thanks.

What's your take on the verapamil injections causing harm? I e-mailed Dr. Lue and I'm hoping to hear his take on it. All I'm concerned about is worsening. I am willing to subject myself to any kind of torture as long as I am confident that I won't do more harm. It's particularly scary because the darn FastSize caused my plaque to start growing in November and I can't forgive myself for that. FastSize definitely has its pluses, but one must be EXTREMELY CAREFUL with it.

Believer
Title: Re: Believer
Post by: ComeBacKid on February 22, 2009, 06:55:23 PM
Believer,

Verapamil injections have had little if any success and as documented by our unscientific yet accurate poll has made some mens peyronies cases worse!  Verapamil still isnt even proven to work itself.   The topical verapamil didn't work at all either.  Anyone who pushes you to have this done you need to challenge on what facts or evidence they have regarding the effectiveness of the procedure, I bet they won't be able to provide you with anything.  On the other hand Dr. Lue has documented success with pentox, a relatively cheap drug, it can be purchased at walmart for 30 bucks a month for three pills a day.  It is low on side effects and a handfull of men here have seen improvements using it.  Even if it doesnt improve your condition it could prevent it from getting worse by blocking tgf-beta 1 and preventing inflamation which leads to more fibrosis. 

Comebackid
Title: Re:Verapamil injections
Post by: Old Man on February 22, 2009, 06:59:41 PM
Believer:

After having had 12 VI injections that caused me more plaque and nodules, there is no way that I could recommend anyone to have them done. There may be advancements in the way there are given now, but I don't think there could be much better way to get them than what my uro did back then.

Just about every injection gave me more nodules and/or plaque. After the session was over, I decided there would be no more them. It took many months of VED therapy to get rid of my Peyronies Disease symptoms.

So, bottom line, I cannot and will not recommend to anyone that they should do the VI injections.

Sorry if this is not what you want to hear, but I must relate my personal experience with them.

Old Man
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: despise on February 22, 2009, 10:02:24 PM
Hey guys! It's me again Despise. Like usual I have to keep waiting because of our financial issues. So I want to get more advice from you guys about what you think I should do about my symptoms. I need to convince my uro and this other uro that im seeing to open their amaginations and except the possibility I might have peyronies and something else. Again im going to explain my symptoms to you guys because you are the pro's in this. Everytime I lay down my flacid penis can be so bended it will touch my left leg and sometimes way worse curving and wraping around like a half of a circle. I get swollen where my flacid penis will engorge and bend. It gets swollen where it 4 5 inches flacid and im 6 with erect. It will stick on my testicles and when I stand up the swollen penis will just go straight down. The urination hasn't been hurting as much but I still am having issues. Not being able to get the last drips of pee out sometimes and have to push to get it out. Some pain while urinating and the urine stream is always weird never a regular cindeler. As for my wet dreams they aren't pleasent and queite painful. After I have the wet dream I feel burning. My uro think I have peyronies which can be true but these are other symptoms that don't associate with peyronies right? As for my bending im always to the left even flacid. As for my erections it starts out going straight to my left touching my left leg. then when im laying down it lays almost completely on my stomach with my right vein pushing up against the skin. As if the vein is broken and instead of it going up with the erection it bends on the skin looking like its trying to burst out. when i get a full erection sitting its curved a little to the left but its also kinda straight to the left. laying down flacid is very uncomfortable I have noticed so many weird shapes it takes. It will bend down and crook left while really swollen. I need your guys advice again. You guys aren't experiencing these complications are you? What should I tell my uro to do. Should I have a cystcostopy? Sorry if I spelled that wrong im 17 remember hehe. I also noticed one thing that was really strange one day. When my  penis was really swollen I touched the bottom of my urethra right below my head. I felt a sharp pain and my penis immediately retracted in pain and lost all of its swollenness and stucked to the left. I have also noticed when my penis isn't swollen and just stuck to the left. I noticed lots of wrinkles and lines coming from the spot where my uro says I have peyronies. When I take a hot bath to try to relax my penis would get really swollen and then it would change and get small and stick to the left. When I looked at it right when it stuck to the left my right vain was stuck all the way to the left pushing up against the skin. When I layed back the vein slowly went back to going straight but still crooked to the left. Do any of you know what I might have? Or could this all possibly be peyronies disease? I really need your help guys my life is breaking apart but im being strong and im not going to give up. Really appreciate everyones dedication and sorry for not being on for a while. I busted my ankle really bad again twice in the same year couldnt wald for a month.
Title: Forum newby
Post by: Jonny13 on February 23, 2009, 04:51:36 AM
Hi everyone,
Glad I found this site.  I'm not sure if i am posting in the right place, but I might as well tell my story and see what you all think.

About 3 years back I was reading a men's magazine that had an article about a website called penisimprovement.com.  It basically was penis enlargement, but talked about other benefits such as a healthy prostate, better overall penis health, etc, and claimed to be run by a physician, so as a gullible college kid, I tried it.

Well, after a couple months of using the exercise program, which I can now say is something called jelqing, kegal exercises, and manual stratching, my penis basically seemed to collapse.  Afterwards, I developed a tingly sensation, an houglass formation when flacid and when getting erect, and general numbness.  I also began having a much more difficult time getting an erection, and had trouble maintaining an erection without physical stimulation.

Well, that was about 3 years ago.  After being very busy and not really thinking twice about it, but also having some unsatisfying sexual experiences, it was about time to figure this out.  I researched what I had done to my penis with that stupid program 3 years ago, and realized I might have developed Peyronies or had some blood flow problem.  Currently, I still have numbness, the hourglass formation whenever not fully erect (especially present when becoming erect) and I notice some twisting and a small dent on the right side of the penis, along with a couple of ridges at the bottom right of the shaft when erect.  When flaccid, my penis hangs lower than before and has a more rubbery texture, and it does not respond even close to as quickly as before to touch.  Also, I think the head of my penis has grown a bit bigger than before those exercises.

Now, I saw a urologist in the area who did some work with Dr. Lue, and he said that this seems like Peyronie's disease, even though he found no palpable plaques when he did a flaccid examination.  He basically sent me off with Pentox and said I could try Cialis.  I am 24, and do not want this problem to consume my life in any way since I will be attending grad school very soon and would like to move on with a normal life!

I have been stressed lately, and will try to get my mind off of this soon and take the pentox.  I am glad this forum is here, and would like to know if anyone has any suggestions, and/or if you agree with my urologist's analysis based on what I have told you.

I still can get erections, but again, it is much more difficult than before.  And this happened 3 years ago, so do you think this has stabalized?  When erect, I still feel some irritation...a slightly itchy feeling...when masturbating sometimes.  I will take a break from sexual activity for awhile and just take the pentox.

As you can see, I am a bit confused by this, and if anything, it's just nice to have other people hear my story and understand!

Take care all,
Jon

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on February 23, 2009, 07:42:56 PM
Kenny82

QuoteI havent asked about the details where exactly the fibrosis was, on the tunica or inside the corpora,
It is my understanding that Peyroines is defined by plaque or nodules that have fromed on the tunica. So if you have something going on inside the corpora chamber then it could be a different issue.

QuoteIs there something like a test that i can get done to check the bloodflow?
Yes....   The ultrasounds you have read about on this forum do indeed also measure bloodflow and in/out of the erection.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on February 23, 2009, 07:54:44 PM
Jonny13,

QuoteAbout 3 years back I was reading a men's magazine that had an article about a website called penisimprovement.com.  It basically was penis enlargement, but talked about other benefits such as a healthy prostate, better overall penis health, etc, and claimed to be run by a physician, so as a gullible college kid, I tried it.

I have read where jelqing is even a recommended cure for Peyronies Disease. But it would seem to me to cause nothing but damage to the penis. It makes me wonder how many others have tried this only to cause damage to themselves. The real question is whether the cialis helps, and is your erection straight? If so, then hopefully the erections and feeling you had before will return. Worrying about it won't help. Many of us on this forum can tell you the mental effects one can have when your erection is severly deformed, to the point of not being able to have intercourse. The mental effects can be half the challenge.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on February 23, 2009, 08:06:33 PM
despise,

QuoteIt will bend down and crook left while really swollen. I need your guys advice again. You guys aren't experiencing these complications are you? What should I tell my uro to do.

I'm not sure you will be able to "tell" your uro anything. Honestly, I've read through your posts including your most recent one. Some of what you say is very confusing to me, and I have a hard time following your thoughts...... sorry.  But I will try to answer your question. Do I think you have more than just Peyronies going on...... yes. I believe you that you are having some pains. You mention pain during a wet dream. Are these waking you up? Generally wet dreams occur while you are sleeping. Also in your post you mention many times about being swollen, and I assume you mean while flacid. If that is the case, then talk to your uro about what could be causing the swelling. It seems the swelling is your main concern so that is where I would start.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on February 23, 2009, 08:10:12 PM
Believer,

QuoteIt's particularly scary because the darn FastSize caused my plaque to start growing in November and I can't forgive myself for that. FastSize definitely has its pluses, but one must be EXTREMELY CAREFUL with it.

What makes you think the Fastsize caused your plaque to start growing? I'm just curios what your experience was with it.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Jonny13 on February 23, 2009, 10:55:21 PM
Quote from: lwillisjr on February 23, 2009, 07:54:44 PM
Jonny13,

QuoteAbout 3 years back I was reading a men's magazine that had an article about a website called penisimprovement.com.  It basically was penis enlargement, but talked about other benefits such as a healthy prostate, better overall penis health, etc, and claimed to be run by a physician, so as a gullible college kid, I tried it.

I have read where jelqing is even a recommended cure for Peyronies Disease. But it would seem to me to cause nothing but damage to the penis. It makes me wonder how many others have tried this only to cause damage to themselves. The real question is whether the cialis helps, and is your erection straight? If so, then hopefully the erections and feeling you had before will return. Worrying about it won't help. Many of us on this forum can tell you the mental effects one can have when your erection is severly deformed, to the point of not being able to have intercourse. The mental effects can be half the challenge.

Hey thanks for responding...means a lot.  I don't know how these websites get away with it!  You know it was presented in a very convincing manner...from a claimed physician as well.  What's more is that the "physician" was interviewed by a well established and respected men's magazine website.  OTherwise, I would never have done it.

Well, I do have a pretty straight erection. It twists to the left a bit...kinda like a corkscrew, which has occurred in the last couple years or so.  There is also a small dent just above the base on the right side.  then the penis gets a bit bigger nearer the head, kind of like it is inflated a bit during an erection.  A bit strange looking, and I don't have the feeling that I used to...sort of replaced by this irritating feeling as I said before.  Otherwise it is pretty straight and not too odd looking.  It's just hard to maintain an erection.

Hopefully with the pentox and by getting my mind off of it, it will clear up!  (It seems you have recovered from the disease?  If so, that is awesome and thanks so much for sticking around and helping us out here). 

I haven't tried the cialis, and am not sure if or when I will...I suppose next time I get into a relationship if not all is working properly.  Any suggestions on this?  Keeping myself in shape, pentox, and grad school will hopefully do the trick, unless anyone recommends otherwise with the cialis or anything else.

jonny
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: despise on February 24, 2009, 01:02:47 AM
Quote from: lwillisjr on February 23, 2009, 08:06:33 PM
despise,

QuoteIt will bend down and crook left while really swollen. I need your guys advice again. You guys aren't experiencing these complications are you? What should I tell my uro to do.

I'm not sure you will be able to "tell" your uro anything. Honestly, I've read through your posts including your most recent one. Some of what you say is very confusing to me, and I have a hard time following your thoughts...... sorry.  But I will try to answer your question. Do I think you have more than just Peyronies going on...... yes. I believe you that you are having some pains. You mention pain during a wet dream. Are these waking you up? Generally wet dreams occur while you are sleeping. Also in your post you mention many times about being swollen, and I assume you mean while flacid. If that is the case, then talk to your uro about what could be causing the swelling. It seems the swelling is your main concern so that is where I would start.

Yes the wet dreams to wake me up. I don't feel to sharp of a pain anymore but it is still uncomfortable and my penis seems to retract and hurt after ejaculating. All the forms and shapes my penis is making is to weird and my urethra is bending with it. After I ejaculate urinating stings. When I have a erection it can either go straight left almost laying on my left leg. When I get a full one its almost laying on my stomach or kind of up but to the left and it painful. After ejaculating it would bend right and bend it weird shapes. While all of this is happening my right vein hurts cause its getting pushed around. Under the vein the erection is hard and everywhere around my penis is hard and painful. Anyone know what symptoms these are?  Urethral stricture maybe urethritis? Ill try to talk to my uro again hes just hard to break through. He doesn't really listen.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on February 24, 2009, 01:59:30 PM
despise,

You do not need our advice again. You need to take the same advice we gave you before.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: kanyewest on February 24, 2009, 06:37:46 PM
Not sure if I'm posting in the right place or not - this forum has an odd structure, though I'm glad I found it.

I am wondering if anyone can help.  A few months ago I started getting odd acute attacks in my penis - some pain and tingling, and then a rapid contraction which made it shrink up extremely small and get extremely painful.

This got worse and more regular until a few weeks ago, when I had a really bad attack and then the most incredible burning sensation afterwards.  This may point towards passing a large kidney stone, though my urologist couldn't see any in an earlier ultrasound.

Since then, my penis has developed some of the symptoms of Peyronies - a hard strip along the top, and a large indentation along the bottom right underside.

I am wondering if my original symptoms (acute attacks) could have been caused by the onset of Peyronies, or whether these fibrous like things are a result of the trauma my penis has experienced whilst getting this stone out.  If the latter, do you think resting it or doing anything now will help to avoid long term problems?

I am seeing uro tomorrow.  I will report back but would appreciate any opionions and advise as I am freaking out 100% here!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on February 24, 2009, 06:58:17 PM
kanyewest,
If you did pass a kidney stone, I'm not aware of this causing or having anything to do with Peyronies. Could any of these symptoms be onsets, it would be hard to say. What I find interesting is your reference to "a hard strip along the top". If this was fibrous tissue on the tunica (as with Peyronies) then I would think you would see a change in erection. Typical evidence of Peyronies is a a sudden and or severe curvature with your erection, hourglass type indentations, etc.

The only advice I know to give since you are seeing your uro..... is that if your erection now seems different or deformed, then take some pictures with you. If you erection is fine at this point, then just go tomorrow and discuss your symptoms with your uro and see what he thinks.

A word to the wise....  many uro's can diagnose Peyronies, but few know how to treat it.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Nate34 on February 26, 2009, 01:24:37 PM
I originally posted this question under the Surgery for Peyronie's Disease thread, but didn't get any response, so I thought I would try to post here.  I had a reputable urologist who specializes in this stuff do a plication procedure on me 3 years ago to try and correct my left curvature (2 sutures were inserted into the right side of my penis to try and correct the curvature).  I have regretted having the procedure done for the past 3 years because the sensation in the right underneath side of my penis is now very dull due to the surgery.  Also, I'm not particulary fond of the feeling of 2 foreign objects (sutures) stuck inside my penis.  (I wish I had thought about these potential side effects more seriously before opting for the surgery)

I basically want to know if anyone who has had the plication (Nesbit) procedure done has later had the surgeon go back in and try to remove the sutures (basically to try and undo the original surgery).  I am debating whether I would be better off having them removed, and if there is any chance I may be able to regain more of the natural sensation that I lost.  My current loss of sensation makes sexual activity much less pleasurable now, and that has been very disappointing to me and has been wearing on me quite a bit psychologically.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on February 26, 2009, 05:30:13 PM
Nate34,
I haven't had the plication, so didn't respond to your first post. It seems a valid question. However this might increase the chance for more loss of sensation, and the only thing you gain is the loss of the 2 foreign objects.

I am curios as to what your curvature was in the first place. If I understand you correctly you are saying that you would have preferred to keep the curvature over the loss of sensation? Are you still able to climax?  Many here would gladly give up a little loss of sensation for a straight erection.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on February 26, 2009, 07:50:13 PM
Many would rather have more sensation than a perfectly straight erection, too!

I know of no published accounts of removing sutures, but I am sure it has happened. If it has been three years, then the nerve damage is probably done healing - what you have is permanent. But, from the sounds of it, it is not the head (the most nerve rich area) and that's a good thing.

Taking out the sutures may not put you back to the original curvature, but should resolve most of the foreign body sensation you describe. Some might remain, as numbed tissue may feel odd anyway, and some built up scar at the site of the stitches may persist.

Finally, you might want to talk to other urologists before going ahead. What if it got worse?

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Nate34 on February 27, 2009, 12:20:22 PM
lwillisjr, you are understanding me correctly.  I would rather have left things the way they were with the curvature and still have my full natural sensation.  And actually, the original curvature has almost completely returned to its full extent that it was before the surgery.  Therefore, not only am I left with the original curvature problem, but I'm now also stuck with less pleasure from any type of touch due to numbness.  It just feels odd and not right to have one side of your penis dull and the other side with complete normal sexual sensation...I feel off balance if that makes any sense.  While I can climax on my own through masterbation, climax during sex is much more difficult.  Maybe I am thinking about it too much and that is contributing to the difficulty.

Tim468, I agree with you.  Many people would rather have more sensation than a perfectly straight erection, and I am one of them.  It's just too bad that it took surgery for me to realize this.  The numbness is actually at the base of the head on the right underneath side, so it actually is in the most nerve rich area.  Since the sutures are farther down the shaft, I guess I never comtemplated these nerves near the head being affected before I had the surgery.  Nevertheless, they were the ones actually affected. I know there are definitely risks to going back in there to remove the sutures.  That's why I definitely want to do my due diligence this time and see if there is any track record of success vs. failure in having them removed on other patients.
Title: Re: Nate
Post by: ComeBacKid on February 28, 2009, 01:56:54 AM
I understand your opinion man.  I've talked to a handfull of men who had a "penile enhancement surgery," and it left them with less sensetivity then they had before.  Did you or are you considering taking pentox? 

Comebackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on March 02, 2009, 11:17:08 AM
Here is a latest update on Peyronie's (I get weekly updates on new publications on the topic).

AU Strzelczyk A.  Vogt H.  Hamer HM.  Kramer G.
FA Strzelczyk, Adam.  Vogt, Heinrich.  Hamer, Hajo M.  Kramer,
  Gunter.
IN Swiss Epilepsy Centre, Zurich, Switzerland.
  adam.strzelczyk@med.uni-marburg.de
TI Continuous phenobarbital treatment leads to recurrent plantar
  fibromatosis.
SO Epilepsia.  49(11):1965-8, 2008 Nov.
AB Despite contrary recommendations by expert opinion and international guidelines phenobarbital remains the most widely prescribed anticonvulsant worldwide. Although associated connective tissue disorders were described in a timely way after its introduction, the association between plantar fibromatosis--also called Ledderhose syndrome--and phenobarbital seems not to be well known in general.

Our case series uniquely demonstrates that continuous phenobarbital treatment leads to recurrent plantar
fibromatosis and may result in long-term disability and numerous unnecessary operations. In general, the association between connective tissue disorders and phenobarbital most prominently appears in adult patients of northern European descent. However, our case series and data from the literature suggest that patient groups less susceptible to connective tissue disorders may as well develop Ledderhose syndrome or other associated syndromes as Dupuytren's contractures, frozen shoulder, Peyronie's disease or complex regional pain syndrome in the course of phenobarbital treatment.

PT Case Reports.  Journal Article.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ggg953 on March 02, 2009, 04:15:49 PM
Hey guys, I was diagnosed about 5 months ago and have been using VED therapy under Old Man as well as oral meds and supplements under Dr. Levine and Gelbard. I was wondering if anyone was noticing very sensitive areas on the skin, around the tip of the glands.  Right to the left of my urethra, there is a little circular spot which bothers me. I have to wear a jock strap for any kind of physical activity as well as be very careful the type of boxers/shorts I wear. I know I have Peyronie's, what the hell is this weird condition on my glands ???
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on March 02, 2009, 10:48:13 PM
G:

You could be using too high a vacuum pressure for one thing. Another cause could be that your penis is being too confined in the cylinder without proper lubrication. As you know, we advocate using plenty of lubricant at all times when using the VED therapy.

Slack off on the vacuum, make sure you are lubing well and try this for a week or so to see it the spot goes away. If not, you make some other problem needing to be checked out by your uro or GP.

Old Man
Title: Re: ggg953
Post by: ComeBacKid on March 02, 2009, 11:46:35 PM
GGG953,

If you pump to hard you can get some spots on your penis from blood being drawn up to the skin.  I think what you have may be just that.  However, if it doesnt go away you should see a urologist.  I got a circular spot when using the VED and some red spots on the base of my penis.  They went away, be advised if your pumping and on pentox, pentox is a blood thinner and may make it more likely you will get red spots. 

Comebackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ggg953 on March 03, 2009, 04:35:36 AM
Yeah, a general sensitivity I have never had before all around my urethra. The circular spot is ever changing. Sometimes looks totally normal, other times it looks like a darker patch of skin with a slightly different taxture. Always feels uncomfortably sensitive.

Thanks guys.
Title: Re: ggg953
Post by: ComeBacKid on March 04, 2009, 11:13:53 PM
GGG,

I had not used the VED in such awhile but I was thinking about it today and I remember getting this sensation on the tip of my penis.  I got it only when using the VED, and I got it in the head, felt like pins and needles like, or at least thats the closest thing I can say to explain it.  I figured it was from pumping and filling up the head, sometimes the head really fills up, and perhaps that puts pressure on the urethra in there and causes that sensation.  If you lighten up on the pumping see if that helps you. 

Comebackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Hitman on March 06, 2009, 02:37:29 AM
I was just wondering if a significant bend of one's penis would necessarily indicate calcification
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Jonny13 on March 07, 2009, 01:56:17 AM
Hey everyone.  I found this recent post on a med help website.  I don't know if it is appropriate to post here since it is not from me, but I find his symptoms similar to mine (and we both performed similar--albeit stupid--exercises without knowing we were hurting ourselves.

My urologist  inspected me and suspects Pyronie's...but I was wondering your thoughts on all of this person's other symptoms/problems, since as I said mine are quite similar.  Again I am on pentox and just started with Arginine.  Here's hoping they work!

Jon

taken from http://www.medhelp.org/posts/show/773337

i have seen a urologist and will again.  Injury occured after vigorous jelqing while very hard. After i was unable to get strong erections, they would come and then disappear quickly (never had performance anxiety).  The same problem exists when i masturbate.
I take cialis 10mg almost daily or whenever i think i may have sex.  It works ok, I will get very hard erections right when the medicine kicks in and it stays around (takes 6 to 8 hours for me)and sometimes in the morning after taking cialis staying hard erections appear hard, they appear though stay hard and then once it goes down i cannot get the same hard staying power.
the problem seems to be on the left side of the the shaft, at the bottom of the shaft it is slightly more spongy and bulges out more than the right side of the corpus caversom.  Also there appears to be a larger blue vein that runs up the left side of the shaft. The corpus caverson is seems to be smaller on the left as if it is cut off from blood flow or it feels as if it does not contain as much tissue, especially near the bottom and mid areas.  Also when i put a finger near the bottom of the shaft on the left side it curls over the figure futher illustrating the damage done on the left side.  the same thing is true on the upper left side.  When hard the bottom of the left side of the shaft bulges out a bit.  My penis also appears to be slightly twisted. it has gone done in size slightly, appears to be some some scarring under the glans penis and it is shriveled near the top on the left side.  There also apears to be 'nics' in the corpus caversom on the left side at various points.  After hard from the cialis the penis aches along the left side particularly at the bottom. this has lasted for a year.penis extender, vitamin e, **** ring, what helps?
Title: Re: Jonny
Post by: ComeBacKid on March 07, 2009, 02:18:42 AM
Jonny,

Before I found this site, I did about two months worth of daily jelqing, that I found off of the site www.penilefitness.com  it was stated it would correct peyronies disease. After doing the jelqing for awhile I got zero erections, my penis would get no erections at all.  I had heard pornstars use jelqing and some had said in the middle east they used to use weights and jelqing to stretch and enlarge their penises (arabs).  Botton line is I wouldn't jelq.  If I were you I wouldn't do any traction or VED for AWHILE!!! If your already on pentox thats a good thing as it is proven to get more blood and oxygen to your lower extremeties.  I'd stay on that and definately don't use traction or VED until your erections come back.  Eventually you can get back on the VED, but now I think it'd be to risky and might make your situation worse.  Jelqing to me is a bad idea and isn't proven to work at all.  Whether it works for pornstars I don't know, I've never heard one come out and say it improved their size, seems like you just hear that in rumors.

Comebackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on March 07, 2009, 10:51:17 AM
jonny13,
I hate to suggest it but I would try antother urologist for another opinion. What you describe would indicate some other type of injury. You may have some Peyronies like scarring, but I would certainly try to get to a specialist and see if you have some type of injury from a result of the jelqing that could also be treated.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Jonny13 on March 07, 2009, 12:54:40 PM
Thanks for the advice guys.  Lwillis, I will probably be moving to the Chicago area within 5 months, so maybe I will try to set up an appt. with Dr. Levine at that time.

It seems I went to a very good urologist who worked with Dr. Lue, so I'm not in a hurry to get a 2nd opinion (plus unfortunately I'll be out of the country for a couple months soon) unless you really think I need one very very soon.  Otherwise I'll until I get back.  I'll continue the Pentox and arginine routine since I can still get erections, albeit with a lot of stimulation.

My case differs from his in that I have very visible hourglassing when flaccid, when getting erect, and then less so when erect, but still there.  Unfortunately I noticed a scarlike indentation on the bottom of my erect penis just 2 days ago.  It is tender to touch and is like a "valley" for lack of a better word...kind of separating my penis into 2 parts.  How I wasn't more aware of this before I'm not sure.  Ha what a mess...

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: bond007 on March 07, 2009, 05:27:29 PM
Hello.  New to this forum.  Problem started in early January, pain w/erection and slight curve.  Self diagnosed Peyronies from internet.  Dr. confirmed in Feb.  Dr. was useless, wait a year and see what happens.  Pain continues, erections are harder to come by and intercourse is not possible due to do pain and not being hard enough.  50 years old and have a stent in my heart otherwise great condition.  I am taking several meds for my heart, Plavix, lipitor, niaspan, lisinopril, low dose asprin.  I ask my cardiologist for a recommendation for a urologist and she made me an appt for a Dr. John J Warner at St. Thomas in Nashville, TN.  It is about an hour from home.  I was wondering what I need to ask him on my first visit.  I asked  my cardio about the Trental and she said it might give me heart palpitations, but she would not let that keep me from taking it, if it would help me.  So...I am hoping this guy has some experience and will give me a prescription for this.  Also I have never used a VED and don't know anything about them.  Should I ask the Dr. about that as well?  Any info you could give me as to informed questions for the doc would be appreciated.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: despise on March 08, 2009, 04:07:29 AM
i just want to ask if any of you are dealing with pain while flacid. when im laying down or sitting down on this computer it really hurts and its stuck to the left. sometimes i notice my left nut is in pain too. any experiencing this? if not please say no and if yes please say yeah. just need a little help understanding what im dealing with because i am waiting for this california insurance and untill then i can't do anything but wait. i have been waiting and waiting so a little help would be awesome! thanks guys

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on March 08, 2009, 05:42:56 AM
despise - are you taking any meds - such as pentox or ALC ??? - i was in severe pain for at least 6 months and now its stopped - man i was suffering you cant believe the pain i was going through - i used ti pull my armpit hair just to take my mind off the Peyronies Disease pain - somehow it went - jus be patient..
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Old Man on March 08, 2009, 09:10:52 AM
despise:

Suggest that you might want to check with your uro or BP about a problem with your left Epididymis gland. The pain you are describing is quite similar to the pain felt with this gland when it is inflamed. This is a little gland that is attached to the Vas Fefresn tube connecting the testes to the upper urinary tract.

Had this problem for years and it resulted in removing the little gland with great success.

Old Man
Title: Re:Despise
Post by: ComeBacKid on March 08, 2009, 03:20:31 PM
An aching or slight pain when flaccid is normal, its from the innflamation, pentox helps stop this and let your penis heal! You might consider getting on it, its cheap and unscientifically proven to work.

As for the testicle pain, I had this and got it checked out even though I didn't want to when I was younger, doctor said I'm fine.  Every once in awhile I'll get a slight ache in my testicle, but it seemed to have went away.  It could be from the peyronies to.

Comebackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: despise on March 08, 2009, 08:06:44 PM
yeah im going to make sure i mention everything about everything thats going on. thanks for the input guys. know how messed up this sounds but glad im not the only one suffering here.
Title: Re: 1st time uro questions
Post by: LWillisjr on March 08, 2009, 09:37:28 PM
bond007,

Quotemade me an appt for a Dr. John J Warner at St. Thomas in Nashville, TN.  It is about an hour from home.  I was wondering what I need to ask him on my first visit.  I asked  my cardio about the Trental and she said it might give me heart palpitations, but she would not let that keep me from taking it, if it would help me.

There is lots of information on this site. So much so it can a bit challenging to find. I don't know anything about Dr. Warner and haven't seen anything posted here about him. I would suggest doing a little research and see if he has any track record of TREATING Peyronies Disease. He might be a great urologist, but might know nothing about treating Peyronies. If possible I always suggest you take pictures when you are erect and take these with you.

1. Don't accept any "wait and see" suggestion
2. Ask about different therapies, and what is the plan? for example, if he suggests doing one type of therapy, and if it doesn't work then what next?
3. Ask for a prescription for Pentoxifyline (Pentox)
4. Ask about a Full duplex color ultrasound (This checks for scarring, calcification, blood flow, etc.)
5. Ask about VED and/or traction as therapy

At this point, if you sense you know more about Peyronies than he does..... find a new doctor.
Title: Re: Re: 1st time uro questions
Post by: Hawk on March 08, 2009, 10:15:15 PM
Print the 2 documents on Pentox. https://www.peyroniesforum.net/index.php/topic,772.0.html

Familiarize yourself with the info and take the printouts to your appointment.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: bond007 on March 09, 2009, 09:28:48 PM
My wife called the Dr.'s office today and asked if he treated men with Peyronies Disease and the answer was yes.  At least he doesn't tell them to go home and wait.  I will take the info and wait and see what happens.  The reason I did not try to make an appt with Dr. Milam is that my experience with other doctors (not in regard to this) has been that a surgeon wants to operate and if you don't require surgery they don't really have time for you.  So I did not know if Dr. Milam would want to spend time seeing someone who did not require surgery.  I will update after my appt.  Thanks for your help!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on March 09, 2009, 10:50:28 PM
bond007
Dr. Milam is a Male Sexual Function Specialist first and a surgeon when that is the only option left.
When I went to see him surgery (implant) was the only option left. I have been to many urologist including the head of the department of urology at UT Memphis. I am hard to impress after all the doctors and BS from the ones here. My impression of Dr. Milam and Vanderbilt are first class. They know what they are doing and how to do it. It is a world class facility.
Jackp

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Hitman on March 10, 2009, 04:42:48 AM
anyone heard about Dr. J. Francois Eid?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: downeskp on March 10, 2009, 07:46:43 AM
1st time user;
'have just had surgery [Nesbit's] last friday. my consultant offered no alternative procedures or therapies. he expained i could expect up to a 1cm reduction in length of erect penis. an acceptable trade off!   I however read in today's Daily Mail [british national newspaper] that with an 80 degree curvature Ishould expect to lose 8cm !!!! can any one tell me which is the more accurate figure?
Title: Re: Hitman - Dr. Eid
Post by: jackp on March 10, 2009, 10:34:43 AM
hitman
In my research I considered going to Dr. Eid.
He uses the scrotal approach and mostly Coloplast implants. 99% of all the people that had an unfavorable outcome that I found had a Coloplast implant.
The ones that were the most happy with implants received the AMS 700 LGX.
My implant is the AMS 700 LGX and I am very satisfied.
That is just my research.

Jackp
Title: Re: Downeskp - Size loss with Nesbit surgery
Post by: jackp on March 10, 2009, 10:43:22 AM
doeneskp
The best explanation of what to expect was given to my by a doctor I respect.
Hold your hand up and curve your finger to the angle of your erection. Look at the short side. That is the length you can expect.
Hope this helps.
Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on March 10, 2009, 06:13:08 PM
doeneskp,

I find it interesting that you had the Nesbit procedure. There is some very limited opinions that the Nesbit procedure is not all that effective for curvatures greater than 30-40 degrees. So I hope that it works for you and that you have very limited loss of length.
Title: Jelqing
Post by: ComeBacKid on March 11, 2009, 05:14:55 AM
Does anyone have any facts on if jelqing actually works to increase size or straighten a penis?  Does anyone have any solid evidence on where it actually comes from?  A lot of these sites call it an "ancient arabic technique," sounds like a lot of bu@$##$#$@#^%@it.   Is there any reference to this in any medical literature that anyone knows of ?

"Jelqing is a method intended to enlarge the penis by exercising the smooth muscle and other tissues in the penis, with the goal of permanently increasing the maximum erect size of the penis. This technique, also called "milking", involves wrapping the thumb and index finger around the penis while semi-erect and repeatedly drawing them away from one's body to force blood into the glans, thus encouraging more vascularity in the corpus cavernosa and associated tissues. Whether jelqing actually works or not is a subject of controversy.

Risks that exist from this exercise are: burst blood vessels, sometimes causing bleeding from the urethra (which can lead to infection and other complications if not taken care of), and temporary or even permanent erectile dysfunction.

There are many products (tools, instructions, etc.) that one can buy; however, much of what they offer (instructions) is available on forums and free websites.

Jelqing is typically preceded by a warm-up with a hot compress on the genitals, and concluded the same way. The reasoning behind the 'warm-up' mimics the normal operation of the biological processes of the penise during the four stages of arousal. The third stage is heat. At this stage the smooth muscles of the 'glans' can easily expand to their present (not future)greatest potential size. However with much more advanced instruction one can over time, achieve a significant physical (not merely psychosomatic) increase in size i.e. length and girth."

Source is the Wikipedia Penis Enlargment (http://en.wikipedia.org/wiki/Jelqing#Jelqing_and_clamping)
Title: Jelqing
Post by: Tim468 on March 11, 2009, 09:26:05 AM
Never been proved. Lots of anecdotal accounts of improvement. There are also anecdotal accounts (here) of this causing Peyronie's Disease.

Like the use of the VED and traction, this will probably span a spectrum from useless to helpful to harmful, and that may have to do with how vigorously it is done. What I have not heard, as I have for traction and VED (when it comes to treating Peyronie's) is what a good definition of "optimal" is.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: RichB on March 12, 2009, 12:09:28 PM
Is it normal for symptoms of peyronie's disease to fluctuate? Are there days when it is worse and days when it is better? I have days when things seem completely fine.

My undiagnosed condition right now, which could be peyronie's disease, has some odd differences in the usual prognosis of Peyronies Disease. I hurt while flaccid but when I get an erection, the pain seemingly goes away. Is this abnormal for Peyronies Disease?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: stevo on March 12, 2009, 01:25:51 PM
I am 25 yrs old and I just noticed a scar-like lump on the underside of my penis (right on the penal raphe line) near the base (about an inch above my scrotum).  It is just under the skin, about 1 cm long and maybe 2 mm wide, very slightly wider on each end (like a Q-tip).  If I gently pinch the loose skin around the "scar" I can feel and manipulate the scar tissue between my fingers, so it feels like it is not attached to the penis tissue itself.  I have not noticed any pain, discomfort, curvature, or other symptoms, but I think this scar literally just formed in the past week or so, possibly due to overly strenuous masturbation one day.  Never had any problem like it before--and I will certainly be more careful in the future not to injure myself.

I opted to skip the general practitioner (don't have one I really trust at this time) and made an appointment to see a urologist.  He can't see me for two weeks though...hopefully that short delay is not a problem.  I also am going to start taking 3 400iu of Vitamin E per day since it can't hurt.

Is it possible this is an injury/trauma scar rather than a Peyronie's onset scar?  Is it likely permanent?  Also, a number of posts on this site suggest injury/trauma to be a cause of Peyronie's disease--am I at higher risk for Peyronie's now that I have this injury?  Is seeing the urologist now the right course of action or should I wait for a period of time to see if the "scar" disappears before seeking treatment?  Any other advice? 

Sorry for the flood of questions.  Chances are the doc will know best, but I am worried and wanted to get your input as well.  Thanks for the support.  I really appreciate this resource and wish you all the best.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on March 12, 2009, 09:37:40 PM
stevo
QuoteIs seeing the urologist now the right course of action

Yes.  See the urologist. Peyronies scarring is usually on the Tunica. You can feel it but not "move it" necessarily. But see the urologist first as it could be nothing.

Nonetheless.......    be careful how you manipulate your penis in the future.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: kenny82 on March 13, 2009, 07:50:00 AM
Quote from: stevo on March 12, 2009, 01:25:51 PM
It is just under the skin, about 1 cm long and maybe 2 mm wide, very slightly wider on each end (like a Q-tip).  If I gently pinch the loose skin around the "scar" I can feel and manipulate the scar tissue between my fingers, so it feels like it is not attached to the penis tissue itself. 

I dont want to make a diagnosis, but before u have checked it out with a doctor, u should not be too worried about it. I doenst have to be peyronies as what u say likely doesnt fit Peyronies Disease. If u can move it and it feels like it superficial under the skin, that it could just be a swollen lymph vessel or a thrombosed part of a vein. just want to calm u down until u see a doc so u dont have to be all too concerned.

Bye
Kenny
Title: Stevo's worries
Post by: Tim468 on March 14, 2009, 09:41:04 AM
Stevo,

See the doc. It does not sounds like Peyronie's, and I cannot tell if what you are describing is even abnormal. So a real exam by a real doc beats us any day of the week!

The other thing already mentioned - masturbation should never lead to an injury to the penis. That is not "vigorous" or similar terms, but simply self-abuse (wait.. that's what they call regular masturbation!.. nevermind)

Seriously, do things that feel wonderful but do not cause injury. If you dodge a bullet and do not have Peyronie's, that would be great. And it would not mean (whatever it is) that you are more likely to get it. But hurting the penis is never a good thing and can lead to scarring.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: stevo on March 14, 2009, 11:32:43 AM
Thank you for all the responses.  I guess there is no sense in worrying before I see the urologist.  Not much I can do til then.

I also appreceate the suggestions about thrombosed vein and lymphocele possibilities...I had not looked into those before.  I will let you know how things turn out.
Title: Re: Emperor - Our Histories
Post by: Jonny13 on April 04, 2009, 02:27:54 AM
Good to meet you, Emperor.  You are in a great place.  Hey, if you don't mind me asking...how would you say it has shaped your life?  I'm real curious since this is new to me, and I want to learn as much as I can, as you do.  I am curious how you feel this has affected your life...

Hope for the best, man
Jonny

Post moved from "Our Histories" since that topic is restricted to only one History posting per member with no 2 way conversation.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Iceman on April 06, 2009, 09:45:58 PM
just got back from my doctor with 6 months supply of pentox - hes great!!
He suggested to treat Peyronies Disease growth hormones - has anyone heard of this and can recommend this as a path to treat Peyronies Disease
Secondly does anyone know of any side effects of years on pentox

thx
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on April 06, 2009, 11:47:02 PM
Quote from: Iceman on April 06, 2009, 09:45:58 PM
just got back from my doctor with 6 months supply of pentox - hes great!!
He suggested to treat Peyronies Disease growth hormones - has anyone heard of this and can recommend this as a path to treat Peyronies Disease
Secondly does anyone know of any side effects of years on pentox

thx

Iceman - Great news on the pentox front :). Pentox is a very safe drug, and I haven't heard of many negative effects even when it is used over a long period. If anything, the more you research it, the safer it appears to me. If anything it probably improves your overall health.

Growth hormones for peyronie's?? That's not an approach I'm aware of. Anyone else?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ocelot556 on April 07, 2009, 03:30:03 AM
As I've been researching hormonal causes of Peyronies Disease, I can assume that Comeback's Urologist has suggested HGH to stimulate androgen production, as a few endochronologists beleive that the reintroduction of androgens can reverse fibrosis and erectile dysfunction in the penis. From what I've read it's the forefront of thinking about this problem, in that there's still many lingering questions as to the risk/benefit ratio. It's sort of like killing a wasp with a flamethrower. Ideally, however, the HGH-induced androgen levels would supercharge the healing process of the smooth muscle.

Naturally it's assumed that the patient is androgen deficient or the receptors for androgens are damaged by the fibrosis. Obviously this isn't the case with all Peyronies Disease cases.

I have a link to an interview with a doc regarding this, but the article itself is unreadable. Instead I can link to another forum that has reprinted the article in total in one of it's threads. I've done so in a previous thread here, but will again if useful. I'm not a specialist in hormones or anything, this is all my assumption of this doctor's methods.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on April 07, 2009, 05:58:44 AM
he only suggested this as an option - i really dont think he knows too much about Peyronies Disease - he just writes out the prescription for pentox and thats about it
Title: very concerned about state of penis
Post by: Cedric on April 30, 2009, 11:46:06 AM
Hello everybody I was supposed to post this message some time ago but my computer broke down and here we are some weeks later. I private messaged Hawk about two weeks ago seeking advice, but he told me rightfully so that everyone should benefit from the message so I should put the question on the board and put it to the community, so here it goes. Here was my question:

Hello Hawk I have have read many of your posts and you seem to be very well informed on the aspects of ed. I was hoping I could share my experience with you. Right now I am 27 years old and I believe, I have some form of ed caused by possible peyriones disease. I live a healthy lifestyle: occasionally drink, do not smoke, and maintain a healthy weight in accordance with my weight. However, my penis can't maintain an erection and it is scary because I do want to have a family and kids but Am scared to even approach women now because the knowledge that my penis will not perform as it used to.

Symptoms:

1. when penis is stimulated for erection, it stays hard for about ten seconds and then just goes down.

2. on the right side of the benis near the base there is the indentation ( probable peyriones) where the penis just curves, but it does not hurt. My theory is the scar tissue that has build up here has does not allow the penis to maintain an erection kind of like re-routing a river.

3. still get morning erection


Conclusion:
Do you think the possible peyriones and the indentation could actually cause one's ed if all other possible factors have been ruled out. And if I do go to a urologist, what should I know in order for me to be an informed patient who ask question of his doctor rather than just listens without even questioning. Thanks again
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Starting2looseHope on April 30, 2009, 03:03:36 PM
Has anyone Peyronies just gone away? I keep reading and hearing from doctors that it can just go away with no medical treatment. Has this been the case for anyone? Even if you were on oral meds...has anyone gone away?
Title: Re: Starting2LoseHope
Post by: Hawk on April 30, 2009, 03:45:44 PM
Look at our topic entitled "Improvement"  Many fail to post there and just refer to improvement in other topics but there are some accounts of improvement there.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Starting2looseHope on May 02, 2009, 12:31:07 PM
I am not sure where to post this but hopefully someone can give me some insight. Along with have a bend in my penis i have noticed that their are dents in my urethra. The doctors did not seem to care about this. But about an inch up there is a dent...almost like someone tied a small piece of string around my urethra. Also the base of the urethra seems to be hard and swollen to some extent. Any ideas? I really hope someone can answer this, as the majority of my questions seem to go un-noticed by both doctors and forums. I am 22 and there is absolutely no way i could continue to wake up every morning if I become impotent at such a young age. I just wish i could find one person or (doctor) that actually gives a ****.
Title: dent
Post by: cowboyfood on May 03, 2009, 09:44:08 PM
Hawk,

I noticed in your posts that you have or had a dent.  That's what I have, and I wanted to know if you could enlighten me on what it is, and what it could be??

Ever since about the middle/end of December 2008 I noticed a dent, about 3/4" long, located on the top/right side, about an inch below the glans.

From what I understand, it sounds like it's the same as a scar, plaque, etc...the same stuff.

My uro felt a scar in the area of the dent.

Basically it's remained about the same, maybe a little more obvious; but about the same.  The entire time I've noticed about 15 - 20 degree bend slightly upward from the point where the dent is located.

thanks,

C
Title: Re: Cowboyfood....the "dent"
Post by: Jackieo on May 03, 2009, 10:06:32 PM
Cowboy:  I understand the dent from our many e-mail exchanges.  I have this question:
My Uro talked about linear and banded plaque.  (I know this is neither of our areas of expertise)...could your particular case could be evidence of a one-sided banded plaque.  From what I understand, this would be atypical (maybe half-of) the "hour-glass" de-figuration (is this the right word?....spell check says it is not a word!) ....?
Just my two cents!.................
JackieO
Title: Re: Cowboyfood....the "dent"
Post by: cowboyfood on May 03, 2009, 10:14:23 PM
Quote from: Jackieo on May 03, 2009, 10:06:32 PM
Cowboy:  I understand the dent from our many e-mail exchanges.  I have this question:
My Uro talked about linear and banded plaque.  (I know this is neither of our areas of expertise)...could your particular case could be evidence of a one-sided banded plaque.  From what I understand, this would be atypical (maybe half-of) the "hour-glass" de-figuration (is this the right word?....spell check says it is not a word!) ....?
Just my two cents!.................
JackieO

Outside my area of expertise is a huge understatement! 

Recently, I remember now that sometime last November or very early December I noticed a "bump"....a small swelling or something...on the spot where my dent is located...I believe the "bump" must have disappeared pretty quickly...It just went away.  It was december ish when I noticed the "lifting" of the top portion of my penis...then I noticed the "dent."

I've seen several posts about dents...it could probably be called a "bend" if it was located elsewhere; or even a "hinge"...but, from what I can tell...It sounds like what others would call a dent.

C
Title: Scrotum Issues
Post by: Starting2looseHope on May 04, 2009, 12:51:06 AM
I am not sure if this is related to Peyronies or not...but i have a red scrotum time to time...mainly after ejaculating. There is kinda of a ichy feeling on the left side, and a dull uncomfortable feeling. I have heard people describe soggy testicles...except in my case the left feels like it is weighing down more. Also my scrotum shrinks up more then it use to and mainly on the left side. the very bottom of the base of my penis on the sides also turns red and hot/burning sensation almost. Its weird that i have noticed this in the past but never thought it to be abnormal. After reading about it im sure something is wrong....i think...Also the base of my urethra, actually in the scrotum, is different..it seems more swollen and harder. Especially during erections. And my tested seem to be more off center...more noticeable when my scrotum is shriveled or i am erect. Sorry for all the question...i feel like i ask 10 a day on here...im going to the doctor (hopefully a uro) tom. Its definitely the least of my worries...i just want to make sure its nothing serious.
Title: Re:Cowboyfood - dent
Post by: Hawk on May 05, 2009, 02:18:18 PM
Quote from: cowboyfood on May 03, 2009, 09:44:08 PM
Hawk,

I noticed in your posts that you have or had a dent.  That's what I have, and I wanted to know if you could enlighten me on what it is, and what it could be??

From what I understand, it sounds like it's the same as a scar, plaque, etc...the same stuff.

My uro felt a scar in the area of the dent.

Cowboy,

You are correct that a dent is scar tissue just like that that can cause a curve.  The type of deformity is dependent on the location and the degree of scar tissue.  Evenly dispersed scar tissue may cause a loss of size with no curve or dent.  While it is only an anology, think of the guy that makes all the shapes from balloons.  The shaping process is the same, the wide variety of shapes is controlled by where the process is applied.  Peyronies Disease is similar in that regard.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Cedric on May 08, 2009, 02:32:48 PM
Hawk:

I am going to be going to the uro, but I don't want him to take control of the conversation, and just tell me it is my age (27) and I have nothing to worry about. I want to be able to talk to him about my "dent", but also ask him questions so I could rule out all physical possibilities before he even starks contemplating my so-called mental state. Can you help me out with coming up with some informed questions. Thanks

Cedric
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Starting2looseHope on May 10, 2009, 05:53:25 PM
I am having a difficult time figuring out if I should have sex, and how much I should have. My doctor said go for. I didnt mention anything about usually doing it a couple times in one sitting. I have also been told not to be sexually active if there is any inflammation (plaque)...this doesnt make sense to me tho. If i have peyronies that means I have plaque, which means i have inflammation so i should not do it? This was in response to a comment I made about the base of my penis (the part that goes into the scrotum region, has been red and seems to be larger then normal) So should i stop having sex until the base of my penis goes back to normal? This could be never? Also if i have sex the first erection is always the hardest...but i usually like to to do it once or twice after that. The erection is not as hard but hard enough....should i cut this out? Basically meaning sex in general.......
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on May 10, 2009, 07:09:06 PM
Quote from: Starting2looseHope on May 10, 2009, 05:53:25 PM
I am having a difficult time figuring out if I should have sex, and how much I should have. My doctor said go for. I didnt mention anything about usually doing it a couple times in one sitting. I have also been told not to be sexually active if there is any inflammation (plaque)...this doesnt make sense to me tho. If i have peyronies that means I have plaque, which means i have inflammation so i should not do it?

S2LH,
This question of having sex has been raised several times. I would be curious as to who told you "not to be sexually active?". I believe most members here will tell you that you should remain sexually active, and that most doctors would tell you to also remain sexually active.

What I would be careful about if I were you is having sex multiple times in one time. Even though you are hard enough, the fact that it is not as hard means that you are more susceptible to trauma or bending during sex. This can cause more plaque to occur. So be careful.

And finally, it sounds like you have some swelling at the base of your penis. This does not sound like Peyronies to me. You should discuss this with you doctor and see if there might be a different problem here.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: RichB on May 13, 2009, 12:10:56 AM
How long do you think it would take fibrosis to set in with the rest of the tissue of the penis?
Title: dent
Post by: cowboyfood on May 13, 2009, 08:19:34 PM
All,

As I've previously stated, I've got an dent, or indentation, about 3/4" long located about an inch below my glans, on the right side, on the top - top/left portion of the shaft;  when erect, there is about a 20 degree upward curve from the area of the dent.

My question is if anyone has noticed what I may notice: When I'm partially erect or fully erect, it looks like the part of the shaft that is below the dent on the right side seems to be "pushed out" a little...or, maybe it's not, it just looks like it compared to the indentation.

CF
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Fredca on May 14, 2009, 05:51:47 PM
Cedric, if you are riding a bike or perform any action that could possiblly "compress" your perineum, stop doing that right away.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ken 2351 on May 19, 2009, 04:31:47 AM
Greeting All,
I'm new to the forum and thank you so much for your warm welcome. I'm a 56 yr. old male with Peyronies Disease. I've had the condition for 5 years now.

After reading some of the posts I feel somewhat puzzled. I have no pain or plaque associated with Peyronies Disease. I have a 60 degree upward and to the left bend. I wonder if my condition can be something other than Peyronies Disease. I've read about dorsal penal thrombosis.
I live in China and have tried some Oriental procedures. The last attempt was bee venom therapy. I injected about 10 live honey bee stings to the affected area. No luck. In the states I tried topical verapamil and still no success.

Does anyone have an idea what I might have?
Thanks for your help.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on May 19, 2009, 08:36:45 AM
Quote from: ken 2351 on May 19, 2009, 04:31:47 AM
After reading some of the posts I feel somewhat puzzled. I have no pain or plaque associated with Peyronies Disease. I have a 60 degree upward and to the left bend. I wonder if my condition can be something other than Peyronies Disease. I've read about dorsal penal thrombosis.

Welcome 'ken 2351' and sorry to hear you have this disease. You say you have this for 5 years, were you initially dignosed by a doctor or are you saying the curve first appeared 5 years ago? Becasue it is possible to have plaque that you alone cannot feel. Generally it takes an ultrsound to more accurately determine the size and shape of the plaque.

If you know for sure that there is no plaque, then yes it sounds like you might have something else going on. Hopefully some of the other guys here will have some suggestions. My advice is to get to a specialist there in China to determine for sure if you have Peyronies or something else.
Title: Re: Plaque ...
Post by: George999 on May 19, 2009, 10:32:26 AM
While all Peyronie's disease involves "plaque", it is not always palpable.  That is, in some cases it is not possible to "feel" the plaque.  But just because you can not feel the plaque does not mean it is not there.  That is why urologists who specialize in Peyronie's usually ask for a photograph of an erection.  If you have no pre-existing curve or deformity and it suddenly appears, that is almost always Peyronie's, with or without palpable plaque.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: MUSICMAN on May 27, 2009, 07:52:02 PM
After about 3 1/2 year and the trial of suggested methods for improvement of my Peyronies condition I have
come to the conclusion that I am at the end of the road. At the degree of my bend sex is not possible. At my age if a wonder drug will come it will be to late for me. Only surgery would help my condition and the cost is far out of my ability (no insurance help). My marrage  of 37 year has made changes in the feelings for each other. Instead of living with this anguish I am wondering if there is a drug that will bring my useless
erections to a full stop and also to bring my sex drive to a I don't care attitude. I know this seems against
what the forum is for but I don't see any whey to find peace. If anyone has the information I need please
send me a pm as no need to pollute the group.                  Musicman
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on May 27, 2009, 10:14:27 PM
Musicman,

I am so sorry to hear of your pain - it is palpable and sounds terrible. To help me understand your position, I went back to read all of your posts, starting in July of 2007. It seems that surgery with a graft was suggested as your best option then, and it might be still true. You state that you cannot afford this, but have you explored all options?

If you have no medical insurance, have you looked at SSI or disability insurance? Have you looked at Medicaid/MediCal or MediCaire as a source of funding? If you have pain, that may qualify you.

If you call the surgeon's office and ask what options they know of, the office manager may be able to help you obtain coverage through mechanisms of which you are unaware. Certainly, when we see young patients (I only see kids) they are often uninsured and our social worker helps them find other sources of money.

Also, if you are in the Xiaflex trial, when it goes to open label, you will get drug and not placebo (currently, you should be "blinded" to what you are getting).

Finally, have you and your wife sought counseling? That too may be found through community mental health centers at low costs. That may help your marriage and allow you to find alternative ways to establish intimacy that work for both of you, not just "intercourse or no intercourse".

I think that there are probably options available to you that you do not know about, because the medical system is so foreign to you. But they are still there and one can find help.

Tim
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: ohjb1 on May 27, 2009, 10:21:49 PM
To musicman - The results of the Xiaflex trial should be available in 4-6 months. The hope is that the drug study will show positive results. Although it may seem hopeless a few more months of this suffering is probably bearable.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: alain_br on May 30, 2009, 10:09:05 AM
Tickling sensation ?

I have recently been diagnosed with peyronies and after taking oral medication (presently on ACL, Vit E and propolis) seem to be feeling a tickling/tingling sensation where previously I felt some pain. Has anyone else experienced this ? I am hoping that this should lead to some improvement, but do not want to delude myself.
Title: Curvature but no pain ... Peyronie's Disease?
Post by: Racer on August 07, 2009, 09:13:03 PM
Over the past few months, I have noticed curvature of my "instrument," when both flaccid and erect. It has always had a slight left-leaning curve, but lately, the curvature has been much more obvious. I have not experienced any pain associated with this, nor have I noticed any lumps or scar tissue, although I now encounter difficulty maintaining a long-lasting erection/ejaculation. Could excessive masturbation have caused this? Could it possibly be Peyronie's Disease? What should my next course of action be? Thank you in advance for your assistance!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on August 09, 2009, 04:14:34 PM
Racer,
Without more information it is very difficult to give any advice. What degree of curvature do you think you have?

If you are not having any pain, or any other issues, then I wouldn't be too obsessed about it. If you are really concerned.... then the best advice I can give is to get to a urologist and have them examine you and assess your symptoms.

Les
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Iceman on August 13, 2009, 02:21:17 AM
is it worthwhile seeing my uro if i am doing everything on this forum?? - i mean whats the point - what can he tell me thats not already here??
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on August 13, 2009, 02:32:27 AM
Iceman - To an extent you have a point. It depends if anything significant has changed in your condition since you last saw a doctor, or if you wish to enquire into options that simply cannot be considered outside of that environment (injections, surgery, etc).  If what you're doing isn't working, maybe go for some of the most recently talked about suggestions: curcumin in coconut oil, or maybe even Low Dose Naltrexone. As long as you're doing all you can, you can't really ask anything more of yourself.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on August 13, 2009, 06:13:33 AM
newguy - OK so what is this curcumin and what is it meant to do and where do i buy it - i checked iherb.com and they have it - is this a good way to go as i dont live in the usa - plus im a bit scared to take ldn....also just found this : http://www.youtube.com/watch?v=6eJvxSXQKCI - - - -your thoughts on this
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: androman on August 13, 2009, 07:48:50 PM
Have you all seen this non surgical treatment for Peyronies Disease?

(link disabled)

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They stand by this product and guarantee it 100% or your money back.

It is backed by scientific studies.  Please visit the site for full details, videos, testimonials, and clinical data.

I do not suffer from Peyronies Disease but I did use this product prior to becoming an affiliate and although it did not add the full 1.4 inches in length, it did add right at one inch in length.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jfl on August 16, 2009, 01:51:32 PM
I have had Peyronies in the bottom half of my penis for about a year and a half.    Last 2 months I developed a burning pain mid penis and am getting a lot of shrinkage and curviture in my penis now.  I easily have lost 3 inches of length and half my girth.      I always thought the pain was just present when you get an erection.  My pain is when i am soft.     I have no interest in sex as my penis just burns.     Is this burning pain a somewhat normal event ?
My urologist was of no help.     Any suggestions ?
Title: Re: jfl ...
Post by: George999 on August 16, 2009, 04:08:00 PM
If you tell us what general area you are located in, someone here can probably recommend a urologist who CAN be of help.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jfl on August 18, 2009, 10:16:46 PM
I am located in the Akron, Canton Ohio area.

thanks
Title: Ohio Urologist
Post by: cowboyfood on August 18, 2009, 10:34:49 PM
Quote from: jfl on August 18, 2009, 10:16:46 PM
I am located in the Akron, Canton Ohio area.

thanks

I posted this a few weeks ago under the "urologists" thread:

I was surfing the net investigating Pentox's use as a treatment for Peyronie's Disease and I found a urologist located in Ohio that prescribes Pentox.

I've been on Pentox for about 5 weeks.  I'm in Atlanta, and a local uro prescribed Pentox for myself, but this may be of interest to those in the Ohio area.

http://en.allexperts.com/q/Urology-Male-issues-989/2009/1/curvature-pentoxyfilline.htm
http://www.drleslie.org/
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jimifan on August 19, 2009, 04:14:14 PM
Quote from: jfl on August 16, 2009, 01:51:32 PM
I have had Peyronies in the bottom half of my penis for about a year and a half.    Last 2 months I developed a burning pain mid penis and am getting a lot of shrinkage and curviture in my penis now.  I easily have lost 3 inches of length and half my girth.      I always thought the pain was just present when you get an erection.  My pain is when i am soft.     I have no interest in sex as my penis just burns.     Is this burning pain a somewhat normal event ?
My urologist was of no help.     Any suggestions ?

JFL:

I am about on track with your onset and experience.  My first symptms were in November '07, so a little closer to two years ago.  I had extremely painful erections for the first 12-18 months and then the pain subsided.  The same time the pain subsided, my erections became less rigid and significantly smaller.  I'd estimate that I've lost close to two inches.  Like you, I experience a burning sensation or pain now, even when I'm flaccid.  It comes and goes and is more annoying and worrisome than a "buckle your knees" kind of pain.  My ED seems to be worsening and I seem to be losing more size.  I've also posed the question on this forum as to wehether this is part of the cycle.  No one seems to know.  At least we know that our cases seem to be similar.  Please keep me posted of any developments and I'll do the same.

Bobby
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: jackp on August 19, 2009, 05:11:40 PM
JFL / Bobby

You need a Male Sexual Function specialist not a general practice urologist. These doctors are hard to find. The one closest to you in northern Ohio probably is Dr. Montague at Cleveland Clinic.

IMHO The best is Dr. Milam at Vanderbilt in Nashville TN. He specializes in difficult cases. I had to travel 3 1/2 hours to see him and would gladly travel 3 1/2 days.

There is no single option that works for everyone. You need expert help.

Jackp
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: jfl on August 19, 2009, 09:16:39 PM
Thanks everyone for your replies.
 
JackP ,  I did see Dr Montigue about a year ago.   He examined me and said basically  "Yep peronies"  nothing he could do for me.   He said come back and see me when you need surgery.  His manipulation of my penis during the exam really kicked things up and it has been straight down hill ever sense.   But you know, I think I will give him another try with the new burning pain that I now have when I am flaccid.

jimifan,   I never really had pain with an erection.  Maybe a little bit at first then it would subside and sex would be pleasurable.     Now I am in pain and dont even want to think about sex.  My wife is very understanding thank God.   It seemed when the inflammation started in the middle of my penis up to the head the burning started.    It keeps me awake some nights.    Very hot baths seem to greatly help.
I will keep you up to speed if I find any help.   I hope I do soon.   I am really small and curved now.
I am afraid to have sex and embarrassed with my male member now.

cowboyfood,   Does the pentox really help ?   I would be interested in how you do with it.
I am ready to try anything now.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Iceman on August 20, 2009, 02:13:16 AM
jfl - pentox helped me - man i was in such pain - jus gotta ride it out - it will pass - get on the pentox asap!!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: George999 on August 20, 2009, 10:53:39 AM
Quote from: jfl on August 19, 2009, 09:16:39 PM
cowboyfood,   Does the pentox really help ?   I would be interested in how you do with it.
I am ready to try anything now.

Jfl,  I have been on Pentox for over a year now.  I have not had one bout with inflammation since starting it.  Pentox works by blocking the cytokines that inflame the penis.  The problem is the difficulty in getting it.  It is not FDA approved for Peyronie's and the big drug makers do not want it approved because it is a cheap, easy to take generic drug and their is no money in it.  Most of the urologists would prefer to do surgeries because there is a lot more money in that.  The links provided by cowboyfood should lead you to an Ohio doc who prescribes Pentox.  You should try that before you put yourself into a position where you are pushed into possibly unnecessary surgery.  Naltrexone is also on the horizon now and is doing miracles for literally thousands of people with a wide array of autoimmune related diseases.  It is another dirt cheap but very effective drug that may show itself effective for Peyronie's as well in the very near future.  This is not an environment where I would leap into surgery.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Manrico on August 20, 2009, 12:08:14 PM
Hi, This is my first post on the board, though I've read for quite a while.  I'm a 27 year old male who has had this since I was 18.  It has slowly worsened without stop over these 9 years.  Originally it was just the left side, but recently after an injection I got it on the right side too.  My question is this.  Have any of you, especially young folks on here, ever used Accutane to treat acne.  I had very bad acne and took this medication when I was 17.  Within a year I had very bad tendonitis in my elbows and Peyronie's, both of which I still have.  Ever since I feel I have had an increased risk for injury in general.  When I get hurt I very slowly if ever heal completely and scar easier than I should.  These types of problems seem to be a somewhat common, though not often discussed, side effect with the drug and would be consistent with Peyronies (healing that went wrong).  Please let me know, if anyone else has had a similar experience!
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: newguy on August 23, 2009, 08:21:27 PM
Manrico - One other member did make a post about experiencing joint pain from Accutane. When I check out the wikipedia page, some of the rare side effects for this drug are outrageous considering that this is a spot treatment: http://en.wikipedia.org/wiki/Isotretinoin . I notice that in rare cases it is thought to cause Crohns disease, which is an autoimmiune and inflammatory condition. It also appears to cause other inflammatory conditions (inflammatory bowel disease etc) and is in reported than in some cases the following conditions persist, even after discontinuing therapy: alopecia (hair loss), arthralgias, decreased night vision, inflammatory bowel disease, degenerative disc disease, keloids (excessive collagen, as with peyronie's), bone disease.

It's hard to tell if the tendonitis and peyronies which occured soon after taking this treatment are truly linked to it, or whether this is coincidental. People have tried to link peyronies to various drugs in the past (propecia etc) and it's hard to ascertain the merits of that as most people are typically one one medication or another anyway. I haven't found any signs on the net that this acne medication and peyronie's are linked. However, the fact that these TWO conditions suddenly appeared when you took the acne treatment is something I'm factoring in, as well as the wikipedia statement relating to the symptons persisting even when treatment is discontinued (as appears to have occured with your tendon issues). I don't want to make outlandish statements, but "maybe" there is a chance that this drug increased your susceptibility to developing problems brought on by otherwise insignificant injuries. Maybe you already had this propensity and the acne treatment ramped it up a notch? It could of course be that all of these issues would've come along anyway and that it's purely coincidental, but the possible autoimmune and inflammatory side effects of Accutane have got me thinking. I wonder if you'd have been helped by Low Dose Naltrexone. I'm getting a bit ahead of myself here. I'll let others chime in.

EDIT:   
For your condition to worsen over a period of nine years, I can see how that would be very troubling for you. As the progression is so slow, it suggests that a treatment such as VED or traction could've been used to good effect. At least that is my belief, and it might be worth looking into those options now. It does appear that you are very suspectable to injury by fact that an injection brought on a further bout. I would definitely avoid injections at all costs in future (with the possible exception of Xiaflex if that eventually becomes available) and possibly start on Trental, L-arginine and Viagra (and maybe curcumin an vitamin d), especially if the recent worsening of your condition is still progressing.
Title: Re: Manrico ...
Post by: George999 on August 23, 2009, 09:49:31 PM
Manrico,  I pretty much agree with newguy on this.  Because your symptoms seem to be systemic and not just limited to Peyronie's, I am thinking you might want to carefully consider LDN.  In any case, I think you should have your vitamin D levels checked and evaluated and at least get on Pentox if you don't want to pursue LDN.  My only concern with Pentox would be whether it might exacerbate one of your other problems.  The good thing about using LDN is that it seems to be helpful for such a wide range of problems, you would probably be able to use it without risking making something else worse.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: joe on August 23, 2009, 11:34:40 PM
Manrico,

I took Accutane for acne, in 2002.  I didn't develop Peyronie's until 2007 after an injury.  Also my father has Peyronie's so it's in my genes.  I never thought of a link to the Accutane before and don't feel there is a link in my case, but who knows.

Joe
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Woodman on August 25, 2009, 02:48:58 AM
Manrico- My brother took Accutane when he was about 18 for acne. This was back in 1989 hes nearing 40 now but he complains a lot of joint & back pain. He never can explain it except just explaining it as getting a little older. He did have a bad reaction or side effect to the drug. He experianced like a Bi polar disorder back then they called it manic depression. It lasted for 6 to 9 months tapering off towards the end. He went from being a normal kind of shy guy. To a wild out spoken person not sleeping for 2 to 3 days at a time being a danger to himself and others. Wrecking trucks driving reculously etc. With lots of energy and hair trigger. You kind of get the picture. Then after about 2 months he would go into a depressive state just the opposite and would get to the point of not really leaving the house staying in side sleeping etc. It was hard to figure out it was before the days of the net. We finally figured it out with the help of the doctor. He quit taking it and it took a good year to year and a half for it to completely leave his system. Once it was gone hes been normal ever since. Its been 20 yrs ago.

If you do a search Iam sure you have it has some real bad reactions and side effects. I always told people I know not to take it unless you have no choice. If you do besure to have someone monitoring your behavor and personality. If it changes get off of it immendiately.

Woodman
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: despise on August 27, 2009, 04:59:13 AM
Hey guys I'm not to sure where I should have posted this. The problems I'm having with Peyronies Disease are stranger. I'm basically asking you guys if you have these same symptoms. I feel as if I could have another problem other then Peyronies Disease. I was diagnosed with Peyronies Disease but I'm suspicious I have something else. Possibly having Peyronies Disease and something else. My symptoms include of very large swelling of my flacid penis. I don't get erections normally except for night time erections. To get a full erection it takes a while of stimulation to masterbate. I have had erections that are straight to the left. Straight as a arrow but just completely to the left. When I get a rare full erection from masterbating its mostly straight but upwards to stomach. Other times its up and more the left. When I get a full erection and masterbate I cum almost right away. The ejaculation will hurt and the sperm is either yellow and brown or bright yellow. When I urinate my penis can be really tight curved to the left and then relaxes and gets swollen when I start to urinate. My peyronies is on the left side on the bottom but also after that the whole left side is hard. My urologist says it hasn't calcified yet and that it will go away in October but he always says that and I feel like it's not getting any better. I can't even sleep because my dick gets so swollen that i squish it trying to sleep on my right side. I can't sleep on my back because its so swollen it hurts and my anal hurts, maybe because of my hemeroids? Does anyone possibly think I could have something else going on? I mean I have urination issues as well. Whenever me and my friends drink they piss like a horse and for a while. I drink like 6 beers hold it all in my bladder and finally piss and its usually not a lot. I can feel pain while im urinating. I've told my urologist about this and he says my bladder is sensitive? I need help guys cause that urologist is free. I'm only 18 years old and I have no money. I'm thankful Glendale healthy kids is helping me out and getting me into that one urologist for free.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Hawk on August 27, 2009, 07:56:32 AM
Quote from: despise on August 27, 2009, 04:59:13 AM
The ejaculation will hurt and the sperm is either yellow and brown or bright yellow.


Despise,

Beyond ANY doubt, this has NOTHING to do with Peyronies Disease.  Have you had a digital rectal exam of the prostate and a PSA test?  If not, get to a urologist and get one now and go over your list of symptoms.  Some of your other symptoms also seem unassociated with Peyronies Disease but no aspect of Peyronies Disease can discolor ejaculate.  You could have anything from prostatitis to prostate cancer to several other issues going on and it is not an issue for self-diagnoses or internet diagnosis.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: ohno on October 04, 2009, 11:56:57 PM
Hey guys, I've had this horrid condition for about 14 months and my Doctor said it's too late for pentox and that I should use the traction device and start the verapramil injections. This is the probably THE expert on peyronie's (which aint sayin' much) on the east coast (nyc). The injections scare the hell out of me. I've started the traction (looks like a device from the mid-ages). I've got the hour glass effect at the base- lucky me! Do you fellahs think its too late for the pentox. Any guidance would be helpful. Thanks
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: George999 on October 05, 2009, 11:17:23 AM
Quote from: ohno on October 04, 2009, 11:56:57 PM
Hey guys, I've had this horrid condition for about 14 months and my Doctor said it's too late for pentox  ...  Do you fellahs think its too late for the pentox. Any guidance would be helpful. Thanks

I don't know how he comes up with that.  I was more than 14 months along when I started Pentox and Pentox certainly worked for me.  I don't see anything at all in Dr Lue's literature that suggests that there is some time limit on starting Pentox.  I don't know where doctors come up with these ideas.  ???  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: UK on October 05, 2009, 01:50:04 PM
George, can you explain what you mean by "pentox certainly worked for me"?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: George999 on October 05, 2009, 08:25:04 PM
Quote from: UK on October 05, 2009, 01:50:04 PM
George, can you explain what you mean by "pentox certainly worked for me"?

It stopped the inflammation and the progression.  I think any doctor that thinks verapamil injections can do better than that needs his head examined.  Traction, maybe, but traction can be used with Pentox.  In any case, I would avoid verapamil injections (or any other kind for that matter) like the plague.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: LWillisjr on October 05, 2009, 10:52:33 PM
Quote from: ohno on October 04, 2009, 11:56:57 PM
Hey guys, I've had this horrid condition for about 14 months and my Doctor said it's too late for pentox and that I should use the traction device and start the verapramil injections. This is the probably THE expert on peyronie's (which aint sayin' much) on the east coast (nyc). The injections scare the hell out of me. I've started the traction (looks like a device from the mid-ages). I've got the hour glass effect at the base- lucky me! Do you fellahs think its too late for the pentox. Any guidance would be helpful. Thanks

ohno,
Many uros will assume you are past the "active" stage and entering the stable phase which may or may not be true at this point. I think you will find the consensus here will say to get started on Pentox, it can't hurt. There is no documented wind of time when it is effective or not. Many (including me) have had the VI's and it didn't help much. There is a recent post from someone who stated that the VI's did help him. They are not pleasant, but I lean towards trying whatever you can. Many here will advise against them due to the invaciveness (sp?) of the needle. I'm one for trying all I can and not giving up.

Definitely start either the traction or VED (many posts here on both). The point is to try different methods as not any single therapy is the cure for us all. Surgery can be the last step, but there are many things to try prior to surgery.
Les
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: ohno on October 06, 2009, 02:29:30 AM
Has anyone here utilized heat therapy and if so, duration, daily, heat pads, jazuzzi, bath tub, etc? Any good results? Thanks (and thanks for the response to my last question)
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: George999 on October 06, 2009, 11:17:07 AM
Quote from: lwillisjr on October 05, 2009, 10:52:33 PM
Many uros will assume you are past the "active" stage and entering the stable phase which may or may not be true at this point. I think you will find the consensus here will say to get started on Pentox, it can't hurt. There is no documented wind of time when it is effective or not.

I believe Dr Lue has 50 documented cases of reduction in calcification.  That would lead me to believe that Pentox can be helpful far beyond the "active stage".  From this I believe that the Dr advising ohno is ignorant when it comes to Pentox.  I would not want such a doctor advising me as to how to treat my Peyronie's.  In fact if I were him, being in NYC.  I would try to get an appointment with Dr Levine at Urology Specialists and get on an airplane to Chicago.  And I wouldn't fiddle around with the guy he is currently seeing.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: newguy on October 06, 2009, 11:26:11 AM
I do think that there's some sense in thinking that pentox is most likely to work when the condition is active rather than stable. For instance, if there is no pain at all, and no changes in curvature for 1 year plus, I'd think that pentox has about the same change of altering any penile scar tissue as it does changing any other long term scars on my body (not much). I can see the logic is using it to avoid or reverse calcification, or as a preventative meausure (in case of further injury), so I wouldn't rule out use completely, but I wouldn't expect changes in curvature to occur after the condition is stable, if pentox is being used. At that stage I see the VED as a good option. Just my view though.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: Skjaldborg on October 06, 2009, 12:06:58 PM
Quote from: newguy on October 06, 2009, 11:26:11 AM
I do think that there's some sense in thinking that pentox is most likely to work when the condition is active rather than stable. For instance, if there is no pain at all, and no changes in curvature for 1 year plus, I'd think that pentox has about the same change of altering any penile scar tissue as it does changing any other long term scars on my body (not much).

In Lue's study, Pentox was effective in reducing some calcified plaque in a patient who was in the inactive phase. The patient continued to see beneficial effect after taking pentox for 2 years, reporting better erectile function without erectogenic medications. The nature of the drug as a blood thinner that increases tissue oxygen levels probably encourages some healing at every stage of the disease. I'm with George999 that Ohno's current doctor is a dope, just like most general physicians (and some uros) are when it comes to Peyronie's. Remember, it's because of ignorant and reluctant doctors like this that there is no cure for Peyronie's. Lay blame where blame is due.

-Skjald
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on October 06, 2009, 03:44:12 PM
Indeed Lue reported "regression of calcified chronic plaques in over 50 men treated with 6 months of pentoxifylline". Levine states that pentox (In animals) "has an anti-scarring effect particularly when the scar is just beginning to form". I do think that the effectiveness is maximised by taking it as early as possible. The sooner the better. Perhaps I'm being a bit too pessimistic and taking too many of my experiences from here, rather than what the professionals claim to have seen. Lue's words are helpful in getting urologists to prescibe pentox, but very low an actual detail. I wish he's provide more information relating to success stories that he has seen.

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: despise on October 11, 2009, 09:39:28 PM

I have gave my urologist a sperm sample and the test results came back normal. At the time I was drinking a lot of alcohol and caffeine so im assuming that was the reason I was having trouble with my sperm. I think I have been a little more paranoid then I should be so that was the reason of my concern. However is there a possiblity I could have something else going on? I would feel pain sometimes after ejaculating but also other times it seemed to be normal, again this leads me to believe it was the joose alcoholic beverage I was abusing with alcohol, caffeine, ginsing, and taunsine.


Quote from: Hawk on August 27, 2009, 07:56:32 AM
Quote from: despise on August 27, 2009, 04:59:13 AM
The ejaculation will hurt and the sperm is either yellow and brown or bright yellow.


Despise,

Beyond ANY doubt, this has NOTHING to do with Peyronies Disease.  Have you had a digital rectal exam of the prostate and a PSA test?  If not, get to a urologist and get one now and go over your list of symptoms.  Some of your other symptoms also seem unassociated with Peyronies Disease but no aspect of Peyronies Disease can discolor ejaculate.  You could have anything from prostatitis to prostate cancer to several other issues going on and it is not an issue for self-diagnoses or internet diagnosis.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: despise on October 11, 2009, 09:42:43 PM
Quote from: ohno on October 06, 2009, 02:29:30 AM
Has anyone here utilized heat therapy and if so, duration, daily, heat pads, jazuzzi, bath tub, etc? Any good results? Thanks (and thanks for the response to my last question)

The only heat thereapy I have done is a hot bath and it does seem to help it relax. I tend to get very hot and dizzy so I can't last long in a hot bath but let me explain what happened. At first my penis was just to the left while under the hot water but then I noticed it went to the right! To me that was a very good thing and then it went into the middle. So it definitely seemed the hot water did something to the peyronies. I also notice when I get out my penis is a lot bigger. So im thinking it helped the plaque in some way and let more blood flow in my penis. From this alone I am inerested in heat therapy. Can anyone explain to me the other heat treatments please?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current
Post by: newguy on October 11, 2009, 09:53:19 PM
Quote from: despise on October 11, 2009, 09:42:43 PM
At first my penis was just to the left while under the hot water but then I noticed it went to the right! To me that was a very good thing and then it went into the middle. So it definitely seemed the hot water did something to the peyronies. I also notice when I get out my penis is a lot bigger. So im thinking it helped the plaque in some way and let more blood flow in my penis. From this alone I am inerested in heat therapy. Can anyone explain to me the other heat treatments please?

When you mention that your penis was to the left, then right then the centre, over what period of time are we talking? Was it fully erect in all of these states (e.g fully erect but pointing to the left, then fully erect ten pointing to the right). Did any change in size occur during this time? If there is scarring on one side, if usually bends one way. I can understand changes over a period of time, but from the description is sounds like something sudden. I never really get what people mean when they say stuff like this so I want to get to the bottom of it :).


Also, can I have a quite recap of the treatments/supplements ou're currently taking, and how your pain/situation is since you joined? 
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: despise on October 11, 2009, 10:08:09 PM
Sorry about that newguy =P remember im young so its hard for me to explain things as well as you guys but I am trying. Well first ill explain how having a bath was when I first got peyronies. My penis would somewhat get a erection but not quite. I guess you could say it got partially but it never got really hard, just got a little larger than normal by being filled with blood. Now it seems to be less large and no, no erection. While I was laying down waiting for the water in the tub, my penis was touching my left leg. When my penis was finally submerged in the hot water it was to the left, diagonaly. It did not take more than 15 minutes for it to move to the right, very odd I know. It felt as if it was relaxing the plaque and somewhat stretching it. Then it went into the middle and then finally back to the left. So the hot water definitely did something and this was actually earlier today =P I feel no difference now but I am convinced the hot water did something positive so I am going to try to take a hot bath everyday.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: despise on October 11, 2009, 10:14:27 PM
Quote from: newguy on October 11, 2009, 09:53:19 PM
Quote from: despise on October 11, 2009, 09:42:43 PM
At first my penis was just to the left while under the hot water but then I noticed it went to the right! To me that was a very good thing and then it went into the middle. So it definitely seemed the hot water did something to the peyronies. I also notice when I get out my penis is a lot bigger. So im thinking it helped the plaque in some way and let more blood flow in my penis. From this alone I am inerested in heat therapy. Can anyone explain to me the other heat treatments please?

When you mention that your penis was to the left, then right then the centre, over what period of time are we talking? Was it fully erect in all of these states (e.g fully erect but pointing to the left, then fully erect ten pointing to the right). Did any change in size occur during this time? If there is scarring on one side, if usually bends one way. I can understand changes over a period of time, but from the description is sounds like something sudden. I never really get what people mean when they say stuff like this so I want to get to the bottom of it :).


Also, can I have a quite recap of the treatments/supplements ou're currently taking, and how your pain/situation is since you joined? 

Oh and I aplogise once again for not answering your question fully. I am only taking vitamin E 400, Vitamin d3 and sometimes fish oil. I stopped taking Vitamin E 400 and noticed that my peyronies got tighter and worse. So I immediately got back on it. Would you recommend me getting on any other supplements? I would say my pain has subsided but I still do feel pain on the left where my peyronies is located. So basically its not completely gone but its not as bad.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on October 11, 2009, 10:37:15 PM
despise - I'll try to state the question in a different way. When you get a very hard erection does your penis always point in the same direction? I'm trying to eliminate the possibility that you are talking about the movements of a semi flacid penis. All that matters is what your penis is like in an erect state.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: despise on October 18, 2009, 10:11:12 PM
When I get a erection it always points in the same direction. I don't get erections when I'm taking a bath but I guess you could say it gets semi erect because its not completely flacid either. Hope I'm at least somewhat helping =P
Title: New to forum with questions - Calcification, twist, Meds etc.
Post by: chiguy on October 21, 2009, 02:16:47 PM
I have monitered the forum for a month or so and finally decided to join. I know there are some knowledgeable folks on here. To give you all a little bit of information:

I am 24 years old. One morning I woke up and had significant pain in my groin and was unable to get an erection. I also experieced browning on my shaft. This continued for 3 weeks. I went to a urologist who said to wait and see. This was March 2009.

Fast forward two months: The pain was present only in erections, which had begun to curve (I always had a slight curve). I also felt a tightness in my erection. The doctor again said to wait and see, but gave me motrin for inflammation.

In August 2009, I switched to a different urologist who diagnosed Peyronie's almost immediately after feeling the plaque. He prescribed 1600 mg of vitamin E, 20 days of Prednisone, and cortisone (for the browning). By this point, the erection was at a 35-40 degree angle upward with a significant leftward rotation on the head. The pain was cut in half due to the prednisone. My doctor it appears is very good. He does not want me to pursue surgery at this point.

I still experience some pain in my erection and it appears the curve has not significantly changed since August. The browning all over the bottom 2/3 of the shaft has not gone away, but the doctor had me discontinue the Cortizone. He also gave me alleve, but it doesn't do much for the pain on erection some of the time.

I have no problem getting or maintaining an erection.

Now for the questions:

1. Is there any reason why on some days I experience pain with erection (and the plaque is hard as a rock) while other days I do not experience as much pain (plaque is present but not as hard)?

2. The penis doesn't look that odd curved upward, but the leftward rotation is weird looking and makes it hard to function. Have any of you ever just had a rotation at the head fixed as opposed to the entire penis?

3. It feels like I have a lot of plaque on the dorsal side, but it doesn't curve upwards as bad as others who have this disease yet say they only have a little plaque. Any thoughts on this?

4. In my condition, what other medications could I press my doctor for to get rid of the pain and stabilize (if I am already not stabilized)?

5. How do you tell if the plaque begins to calcify? (my biggest concern)

Thanks

Title: Re: New to forum with questions - Calcification, twist, Meds etc.
Post by: jackp on October 21, 2009, 05:57:08 PM
chiguy

I will try to answer some of your questions. First I believe in vitamin E it thins the blood there fore you get better blood flow to the penis.

It usually takes peyronies 18 months to stabilize. During that time you need to start VED therapy. Go to the VED board and do some research. The goal is to keep the penis healthy and keep from loosing penile size. The most common complaint with peyronies is loss of size, length and girth. The VED is the best therapy for that.

As for pain, I did not have pain with my peyronies, I took 800mg of ibuprofen twice a day for arthritis, so that may be a reason. Other pain killers will block feelings to the glans and make erections and ejaculation more difficult.

You will know when the plaque has calcified when it turns hard.

Like I said at this point the Vitiaman E and proper VED therapy is your best bet.

Jackp


Title: Re: New to forum with questions - Calcification, twist, Meds etc.
Post by: chiguy on October 21, 2009, 08:02:18 PM
Thank you Jackp.

Would it be safe to assume that my plaque has not yet calcified? Sometimes it feels hard, yet other days I can feel it, but it is not very hard to the touch.

I will look into the VED, though I am under the impression that it is best used for people that do not get active use of their genitals or already have experienced erectile dysfunction?

Title: Re: New to forum with questions - Calcification, twist, Meds etc.
Post by: jackp on October 21, 2009, 09:01:25 PM
chiguy

The VED therapy I recommended is not for sex it is to keep your penis healthy, help reduce curve and prevent loss of penile size.

Like I said before the number one complaint of men with peyronies is loss of penile size. You do not want to wake up one morning and wonder where did 1 1/2 inches of my penis go.

The 3 cylinder protocol is recommended but I already had a Rx single cylinder. Old Man worked with me and worked up a therapy. I have it posted on the VED board under Single Cylinder VED Therapy.

You can see how the VED helped me by going to My History, a link is posted at the bottom of this post.

The therapy takes time to work. 3 months of more so just be patient.

Any questions do not hesitate to ask

Jackp
Title: Re: New to forum with questions - Calcification, twist, Meds etc.
Post by: chiguy on October 21, 2009, 09:52:26 PM
Hey Jackp,

For some reason my PMs aren't showing in my outbox so I am not sure if you will get them. Thanks again for all the help.

I have an appointment with the urologist for a followup in less than 2 months. Do you think it is beneficial to wait to see him prior to ordering a VED? He sees a lot of Peyronie's patients and doesn't rush anyone out of the office, so I trust him as a good doctor.

What is the difference between the one and three cylinder VED devices?

I have full insurance so maybe if I get it thru his office the insurer will pay.

Thanks
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: BentYoung on November 16, 2009, 01:12:17 AM
Does anyone experience accompanying urinary issues with their Peyronie's? I am 24 year old male with Peyronies Disease for as long as I can remember (hourglass and upwards curve). I have had painful urination with cloudy urine since I can remember as well (maybe once a month). My theory is that my plaque constricts my urethra and causes bacteria buildup that leads to infection. Anyone have comments or similar stories? 
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: George999 on November 16, 2009, 11:12:08 AM
Quote from: BentYoung on November 16, 2009, 01:12:17 AM
Does anyone experience accompanying urinary issues with their Peyronie's? I am 24 year old male with Peyronies Disease for as long as I can remember (hourglass and upwards curve). I have had painful urination with cloudy urine since I can remember as well (maybe once a month). My theory is that my plaque constricts my urethra and causes bacteria buildup that leads to infection. Anyone have comments or similar stories? 

Brent,  Fred and I am both in the same or similar situation as you are.  My theory is a bit different than yours.  I am thinking that Peyronie's itself is part of a broader inflammatory syndrome that affects the whole body.  In some cases the only effect is Peyronie's.  In other cases it includes other things such as, in our cases, chronic urethritis or inflammation of the urethra.  In my case I have had extensive studies done which have found no infection, but have found microscopic bits of tissue exhibiting an ongoing inflammatory process in the urinary tract.  - George
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: chiguy on November 16, 2009, 10:50:23 PM
I have done some preliminary searching about the link between propecia and Peyronie's. A lot of younger members seem to have taken propecia at some point and then developed the disease. I myself have taken propecia for 6 years. I googled "propecia peyronie's" and some stuff showed up. A lot of people are convinced that propecia may assist in the development of Peyronie's.

I will ask the doctor about this when I go see him to gauge his response. Sometimes propecia can cause erectile dysfunction (according to the FDA), but there is no mention of Peyronie's on their website.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: GaryNC on November 21, 2009, 01:04:59 PM
Have you had your testosterone level checked?  I am 53 now and have been using the rub on your stomach supplemnt for years now.  Do you still have any hair on your legs?  My leg hair grew back when my hormone level was increased
Title: Re: chiguy
Post by: ComeBacKid on November 21, 2009, 02:06:48 PM
One thing we are noticing on this forum is there seems to be some kind of a link between lack of erections and peyronies.  Whether its men who had prostate surgery to remove cancer, or bladder surgery to remove cancer, and didn't get any erections, then ended up with peyronies disease.  Anything that causes ED or partial ED could aid in the developement of peyronies disease.

Comebackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: BentYoung on November 21, 2009, 08:02:46 PM
Random question,

Being a 24 year old still in college, I enjoy normal drinking for my age (weekends 4-5 drinks) - I forgot to ask Dr. Lue about alcohol's interaction with Pentox - I realize that drinking makes everything worse, but that said, does anyone know if these drugs interact or what I should look out for when drinking?

Thanks
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Skjaldborg on November 22, 2009, 12:34:13 PM
BentYoung,

When I had my appointment with Dr. Lue, his assistant Dr. Schindel discussed my lifestyle habits including my alcohol intake. I have about 7-8 drinks per week (spread out over the week), an amount which Dr. Schindel found completely acceptable given my age and fitness. He did not mention any interactions with Pentox and in my own research I have found nothing mentioning alcohol interactions with pentox. Nonetheless, 4-5 drinks, and let's be honest, that number is probably higher, it was for me when I was in college :) , is a lot of alcohol at once. Cutting down wouldn't be a bad idea and maybe limiting the drinking weekends to 1-2 weekends per month is a good way to start. It's ok to drink responsibly and blow off steam every once in awhile, but make sure you "earn" you drinks by eating right and exercising the rest of the time.

The only drug I can find listed as dangerous with pentox is sodium thiopental, a drug used as a general anesthetic. If you will be having any surgery (including dental or oral surgery), let them know if you are using pentox. I don't know if sodium thiopental is used commonly in the US, but it is listed as an essential drug for the World Health Organization so be mindful of that if you receive medical care while living or traveling in a country other than the United States.

-Skjald
Title: Re: BentYoung
Post by: ComeBacKid on November 22, 2009, 06:40:31 PM
The last time I was on pentox I had heavy alchol intake for 9 days straight  while on pentox, I was at a business training with a bunch of hooligans, did it kill me? No , it won't hurt you as far as I know.  Is alcohol good for peyronies?  Not at all.  I don't drink at all really anymore, maybe for special holidays I'll have some wine.  Heavly alcohol use can lead to liver fibrosis, and I noticed my penis worsened at points in my life when I had heavy alcohol intake.  I would avoid it all costs if it were me.  If you do choose to drink, at the end of the night when your "sobering" up you could drink a few glasses of water to help soften the dehydration blow, 3-4 8oz glasses of water.

Comebackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: I_H8_PD on November 25, 2009, 04:43:29 AM
Hi all,

This is my first post

I am 22 years old, and i have been living with peyronies for about 7-8 years. The progression of the disease has gotton quite bad. I have been reading up and i have found that i have a rare case where the penis is angled directly downwards. and very sharply. maybe about 80 degrees.

it looks very similar to this photo i found:

beverlyhillssurgical.com/images/photo_curve_down.jpg

It has been a slow progression towards this state. and i believe it has remained unchanged since i was about 19 or 20 years old. I have NO PAIN at all when i have an erection but it reaches that curved down state.

I seriously dont know what to do, i realize i have a severe case. But will Xiaflex work on a case this severe or will i have to have surgery? I dont know what to do...

I live in Sydney, Australia

its honestly not fair that i have this disease at this age.....Sad. I hate my life.
Title: peyronies.org
Post by: cowboyfood on December 03, 2009, 12:11:33 PM
I had not visited this website in at least six months, but Dr. Gelbard has acknowledged and suggested many of the treatments (and timing of them) that are strongly endorsed on our forum over this time period (VED - even gives a plug for the Augusta Med. Device, Pentox, Viagra-like med).

http://www.peyronies.org/pages/forum.htm

CF
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: skunkworks on December 03, 2009, 07:44:47 PM
Quote from: I_H8_PD on November 25, 2009, 04:43:29 AM
I am 22 years old, and i have been living with peyronies for about 7-8 years. The progression of the disease has gotton quite bad. I have been reading up and i have found that i have a rare case where the penis is angled directly downwards. and very sharply. maybe about 80 degrees.

it looks very similar to this photo i found:

beverlyhillssurgical.com/images/photo_curve_down.jpg

It has been a slow progression towards this state. and i believe it has remained unchanged since i was about 19 or 20 years old. I have NO PAIN at all when i have an erection but it reaches that curved down state.

I seriously dont know what to do, i realize i have a severe case. But will Xiaflex work on a case this severe or will i have to have surgery? I dont know what to do...

I live in Sydney, Australia

its honestly not fair that i have this disease at this age.....Sad. I hate my life.

You have had Peyronie's since 14? Was it caused by an injury that you know of?

Have you been diagnosed by a doctor who is familiar with Peyronie's?

Is your erection functional? ie/ can you achieve penetration?
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: chiguy on December 03, 2009, 08:21:13 PM
Quote from: I_H8_PD on November 25, 2009, 04:43:29 AM
Hi all,

This is my first post

I am 22 years old, and i have been living with peyronies for about 7-8 years. The progression of the disease has gotton quite bad. I have been reading up and i have found that i have a rare case where the penis is angled directly downwards. and very sharply. maybe about 80 degrees.

it looks very similar to this photo i found:

beverlyhillssurgical.com/images/photo_curve_down.jpg

It has been a slow progression towards this state. and i believe it has remained unchanged since i was about 19 or 20 years old. I have NO PAIN at all when i have an erection but it reaches that curved down state.

I seriously dont know what to do, i realize i have a severe case. But will Xiaflex work on a case this severe or will i have to have surgery? I dont know what to do...

I live in Sydney, Australia

its honestly not fair that i have this disease at this age.....Sad. I hate my life.



A good surgeon can fix this problem, but first you need to make sure you have peyronie's. If it is indeed a congenital curvature, meaning you were born with it, a surgeon can fix it by plication. Plication is a procedure by where they will make the longer side (in this case the bottom) equal to the length of the short side.

If it is indeed Peyronie's, a doctor may do excision of the plaque and grafting.

The most important thing to do now is see a urologist, get a doppler ultrasound to check for plaque, and see if it is peyronie's.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: Tim468 on December 05, 2009, 05:05:14 PM
Dear "I hate Peyronies Disease"

So do we...

The downward angulation is said to be the hardest to surgically fix. My recommendation is to see a urologist to get an opinion, but seriously consider seeing one of the "best" surgeons available. That translates, simply, into seeing a surgeon with good hands who does good work. Those who do research may be very good (and usually are) but for surgery, you need someone who has done many, many surgeries.

Please ask you urologist (if he recommends surgery) how many surgeries he has done on downward angled penises (peni?) and ask him if there are any surgeons who stand out as "best" in his mind for doing such a rarely done repair. See what he says.

Tim
Title: I can't believe it. Scared.
Post by: nebula on December 06, 2009, 06:58:40 PM
Hi, I'm new here. 19 years old.

In August of this year, my girlfriend and I were messing around and she wound up masturbating me. We were lying in kind of an awkward position, and she was being somewhat aggressive. Afterward, there was some redness and slight pain but I thought nothing of it and figured it would go away in a few days.

After a few days, the redness did go down. It was still slightly sore, but nothing unbearable or anything, so I just went on with my business. I did notice something though; I was still able to get erections, but they didn't seem as strong. AND, it didn't hurt, but there was definitely some sort of sensation that I hadn't experienced before.

A few weeks later, my girlfriend sees my penis and says "Why are you crooked?". This would have been about the middle of September. It's worth noting that prior to this occasion, she had never see my penis in light before because we had only been dating for a short period of time and anything we did was done in the dark. When she said this, my penis WAS bending rather to the left. And for the life of me, I couldn't remember if my penis had always looked like that. I know it seems stupid since we see the thing every day, but I just couldn't. I started thinking "Have I always been like this or is this some sort of recent development?"

So around that time I started researching some things online. Through some searches, I stumbled upon something about Peyronie's Disease, which I had never heard of before. Once I read that it can be caused by trauma to the penis, I thought back to that time of my girlfriend and I in August because that's the only "trauma" I could think of that could have occurred. I started thinking that maybe I had this.

But, I kind of just forgot about it because I had other things going on and thought maybe it wasn't such a big deal anyway. I figured, "the thing still works and, who knows, maybe I've always been like this". However, now in December, I have to say that my penis looks more curved than I can ever remember it being. In fact, it's not so much a HUGE EXTREME curve or anything (although there is a curve), but more like the thing just points or twists or tilts to the left, erect and non erect. But when it is erect, it's at about a 50 degree angle or so the left and won't stand up..sticks out.

As I mentioned, I couldn't totally remember what it looked like before, and I don't think I've ever been totally straight down there, but I'm pretty sure it had never been as extreme as this. Plus, if I use the tip of my finger, I can feel a a sort of "scaley" type formation on the left side, which isn't present on the right (or at least nowhere as bad). Not sure if this is just a normal part of the penis or not, but it still alarms me.

So, I figured it might be time to get it checked out since it's been about 4 months since the incident. But I'm not sure what I should do. What do I tell them when making the appointment? Do I need a referral from my primary doctor to visit the urologist? Will they be able to tell me for sure if I have it in one visit? Being fairly young, I'm just not fully familiar with how this kind of stuff works. And it's not like this is something I want to talk with my family about, so I feel comfortable posting here.

I just need some piece of mind. And I'd like to think that if it IS Peyronie's, something can be done to help me straighten it out. I see a lot of people on here seek treatment for pain, but I'm not really experiencing any pain. I just want to be straighter down there because I think there has been a change. Sorry if there has been a little too much information in here.  :-\

Thanks
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: BentYoung on December 06, 2009, 07:03:14 PM
Question - Have any of you seen vein or vascular changes since Peyronies Disease. I have the band form of scarring that causes hourglass/upwards curve. I noticed that my dorsal vein has been getting progressively bigger since this began, which makes sense because scarring intersects the vein along the top and causes restriction. Is it possible for this vein to rupture due to the pathology of the scarring placing pressure on it? Has anyone heard of vein rupturing due to Peyronies Disease? If so, what should I look for? 
Title: Re: I can't believe it. Scared.
Post by: chiguy on December 06, 2009, 10:15:53 PM
Nebula,

Depending on where you are located, you may be able to make an appointment with a urologist. Most of us on the forum are from the United States. Depending on your insurance carrier, you may be able to make an appointment immediately or you may need a referral. If you are in Great Britain or Canada, I think you will need to go to your general practitioner first for a referral to a urologist.

This disease is best treated early, assuming you have it. You may have a congenital curvature, which has been present since birth, but becomes noticeable during puberty. This is fixed with a plication surgery, where they shorten the longer side to match the shorter side.

If you have peyronie's, most doctors will start you with natural vitamin E supplements. I take 4 400mg pills a day. Most forum members take far less. There are several options in treating peyronie's, but it is important you confirm you have the disease first. There is also the possibility of scar tissue unrelated to peyronie's.

The most important thing is to make the appointment with a urologist immediately if you can. What geographic area do you live? A lot of forum members know the best doctors to treat peyronie's in both the US and Great Britain. We can provide some recommendation. Also, describe your insurance carrier.
Title: Re: I can't believe it. Scared.
Post by: ohno on December 06, 2009, 11:43:54 PM
I'm pretty new to this forum and there are many people on here with a lot more experience than I... but I think you should read about pentox (enter it into the search - find Dr. Lue's study) and take that with you to the urologist. Many doctors don't have a clue about this condition and if it is confirmed you will want to immediately start on pentox (unless there is some medical condition which might prohibit its use). Dr. Mulhall indicated to me that had I started on pentox during the early stages it would have corrected the condition. Hopefully you don't have peyronie's. Good luck.
Title: Re: Are You Newly Diagnosed or Need an overview of the forum?
Post by: bobshouse on December 11, 2009, 05:57:21 PM
have had for a little over a year now , nothing seems to work even $600 medication prescribed by my Doctor .......
Title: Re: Are You Newly Diagnosed or Need an overview of the forum?
Post by: George999 on December 18, 2009, 10:43:27 AM
Quote from: bobshouse on December 11, 2009, 05:57:21 PM
have had for a little over a year now , nothing seems to work even $600 medication prescribed by my Doctor .......

Bob, are you referring to Potaba?  - George
Title: hourglass shape
Post by: exoduS on February 14, 2010, 04:56:45 AM
Hello all. i am very new to site and has been searching for peyronie for few days.

i injured my penis while doing penis enlargement excersizes back in June 2009. i had varicosed veins in my penis and they were so painful and disturbing. i have been taking vitamin e, detralex(vein pill), and recently started a multivitamin supply.

i didnt have any deformity of penis till 2 weeks ago. i recently realised while it is getting erect i see that hourglass shape then it turns to normal. also when it is in flaccid state it is so hard and like something is squezing it in the middle and gives great discomfort.

i feel it is very hard in the root of penis. i was in several urologists and they never told me i have peynorie but i also didnt have anything hard in my penis till last weeks. it is something like surrounding root of my penis.

i am thinking maybe the reason for this is the supplement i took and there are many vitamins, iron , calcium and others. so maybe some ingredients made it hard??

already i have been taking vitamin e for 2 months and i just started using vitamin e cream, it feels better when it is flaccid now. can u give me some recommendations about my situation? i feel it is very hard in the root of penis.

i am only 25 years old and feel very down..

Title: Re: hourglass shape
Post by: chiguy on February 14, 2010, 08:25:47 AM
Exodus,

Sorry to hear you may be affected by this condition. You need to go to a male sexual function specialist, preferably one that specializes in peyronies. Not sure which country or state you are in, but let us know so maybe we can find a good one for you.

Read the board and all of the forums, and they should provide more in depth information. In the meantime, continue with the vitamin E, although many say it doesn't help. Monitor the situation. It sounds like you could be in the early stages.

The first 12 months are the active phase, where the condition progresses. Certain medications like pentox (trental) are proven to be effective, but a urologist must prescribe them.

You can also start taking 2000 mg a day of l-arginine supplements, which can be purchased over the counter at any drug store.

To determine if you have peyronie's, you should get a penile doppler ultrasound. There is plenty of information on that on this board.

Let us know if you have further questions.
Title: Re: hourglass shape
Post by: exoduS on February 15, 2010, 12:24:48 PM
Hello. i had a penile doppler ultrasound 2-3 months ago and it was clear. but something strange happened. when they injected me the solution i didnt get any erections but the guy still checked my penis with the prob and in his report it was written i had enough erections and normal blood flow. also the images were showing the blood flow rate in the report.

i have met a site that there are people claiming they got rid of this situation or at least correct some of it. but dont know if it is real or the guy is trying to sell some products or videos. there people were claiming that they had a lot correction in 1-2 months with some supplements also vitamin e.

peyronies-disease-help. com/

and here is a site that i found recently and it is a good resource to find information about sex and penis.

cure-erectile-dysfunction. org/

his reply to my question about peynorie was to make hot wraps, vitamin e cream, using some multivitamins and it will be ok in some months.

i am trying to check the forums but i dont see anyone who really got over this problem.

i can say vitamin e cream helped my feeling for flaccid state as it doesnt feel so hard and i dont feel the band around but still when it is getting erect the band is visible and when it is erect middle is more flat.

i will report you my improvements and check your forum more..

thanks a lot
Title: Re: hourglass shape
Post by: chiguy on February 15, 2010, 03:00:22 PM
It's possible that the condition has progressed since you got the ultrasound, especially if you were still within the active phase of the disease. A lot of us question the effectiveness of some of the treatments on those websites, but this forum is by far the best source of information. Dr. Therazy's institute claims to have a high success rate, but most mainstream doctors do not utilize his treatments, so you must use them at your own risk if you choose.
Title: Re: hourglass shape
Post by: LWillisjr on February 15, 2010, 05:42:02 PM
Quote from: exoduS on February 15, 2010, 12:24:48 PM

i am trying to check the forums but i dont see anyone who really got over this problem.



Hmmmmmm... try here....
https://www.peyroniesforum.net/index.php/topic,466.0.html (https://www.peyroniesforum.net/index.php/topic,466.0.html)
Title: Re: hourglass shape
Post by: exoduS on February 21, 2010, 08:51:43 AM
hello all..

as i stated i had been using some vitamins for my injury and recently started using vitamin e cream. it also has vitamin a in it. which worked great with me.. i know have very little pain and also dont have firm flaccid state. it feels better when i hold it. still there is pain and these varicosed veins and pain comes from them.

also the hourglass shape while getting erect is not disturbing me anymore as it feels normal.

has anyone tried vitamin e cream?? as it releaved a lot pain from me. maybe it can also help ur symptoms..
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: ocelot556 on April 16, 2010, 09:55:31 PM
I have noticed as my Peyronies Disease progresses, for better and worse, that the head of my penis is changing color. When I was younger (I am 26 now, developed Peyronies Disease at 23) the glans of my penis was generally pink to reddish, and warm to the touch even flaccid. Now, my penis is often pale to white, and sometimes - like when I pull it from my fly to urinate - it can be really white, though it seems to gain a LITTLE color while it's in my hand. It remains pale though.

I have noticed that the color of the glans turns back to red when I've used Viagra. Is this a bloodflow issue and - more importantly - would the lack of an adequate blood supply lead down the road to some sort of tissue death?

I know this might be more of a question for a urologist. You point me to the urologist who is willing to listen thoughtfully  and answer these questions, and I'll show you an out of the ordinary MD!
Title: Color of Penis Head
Post by: ComeBacKid on April 26, 2010, 03:13:47 PM
Ocelot,

I wouldn't be to concerned about that.  You could mention it to your urologist.  Many things change the color of the head of the penis.  Some are whitish or more pale, some purple, some red.  Getting an erection can change the color, being hot or warm, being cold, ever notice how your veins turn purple color in cold weather? 

Comebackid
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: calamity on June 18, 2010, 05:37:50 PM
Hi guys. I am new here, and for now i have only one short question.

Is scar tissue, or plaque really that noticeable?? I suspect i might have peyronies (or mild case of it), but i can't feel anything on my "tool". I have searched it thoroughly, and can't feel, nor see any lumps, or growth on it.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on June 18, 2010, 10:32:38 PM
Quote from: calamity on June 18, 2010, 05:37:50 PM
Hi guys. I am new here, and for now i have only one short question.

Is scar tissue, or plaque really that noticeable?? I suspect i might have peyronies (or mild case of it), but i can't feel anything on my "tool". I have searched it thoroughly, and can't feel, nor see any lumps, or growth on it.

It differs from person to person. In your case, if you can't feel plaque as such I wouldn't say that you can rule peyronie's out.  Without knowing more info it's difficult to say. I will say that on other forums I've seen people worried about peyronie's and the images posted appear to me to be of a perfectly normal penis. If you have noticed any changed in the curvature of your penis though, this would be something of concern. Such changes may or may not occur alongside pain, or a noteworthy injury of some kind.

You should go to a urologist if you have concerns in this area.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: calamity on June 19, 2010, 08:26:30 AM
Thank's for answering.

Well, i noticed that my penis started leaning to the left a bit, about 5 years ago (i'm in my early twenties now). The curvature hasn't changed since. I never felt pain, and haven't find any lump as i mentioned. I used to "hump the bed" when i was a kid, and deeply regret it now.

I noticed after masturbation, that the curve increases in flaccid state, for a few hours. When i tuck it to the right side of my shorts, after a while, the curve is almost non present (but still leans to the left a little bit).

When my penis is erected i notice the curve straightens, but is always leaning to the left. It's not crooked erection or anything, it just leans to the left when erected. The curve is actually worse when in flaccid state. (sometimes touches my left leg)

I found out about peyronies when i googled about loss of morning wood, and weak erections. Yeah i know, i should go to urologist, but i am too ashamed :(
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: LWillisjr on June 19, 2010, 03:59:10 PM
I agree with Newguy.

I'm not sure what you mean when you say your penis "leans". If you mean while flacid that it seems to point away from your body at a different angle other than straight, I'm not sure that means anything. Many men seem to have a particular way their penis hangs when flacid. Ever here of the term "dress right" or "dress left"?

Here is the main thing. Can you achieve erections and is your erection fully functioning? If so, then stop worrying.
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: calamity on June 21, 2010, 06:20:26 PM
Well by leaning i mean when erected then it just points away at different angle, it doesn't actually bend or curve. But when flaccid then i have a noticeable curve. It's pretty weird actually, it seems like the total opposite of peryonie's description, as my penis actually straightens when erected.

For example after a shower in flaccid state, the curve gets more noticeable (about 30-40 degrees). I always tuck it to the right side of shorts, so it kinda gets straightened. To sum it up, i have about 30 degree curve to the left on my penis when it's flaccid, but when erected it just slightly points away to the left. If i remember correctly this state just suddenly came about 5 years ago and haven't progressed since.

Can you guys, tell me what is the difference of normal curve and peyronie's disease. I can achieve erection, but i noticed lately it's not what it used to be (that part is probably just mental).

Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: newguy on June 21, 2010, 09:22:00 PM

Well, if this has been going on for 5 years, but has never manifested itself in an erect state, or has not been accompanied by pain, injury or anything like that, then I don't think you need to worry really. In your shoes, I would only take action should I find that my penis curves in an erect state. Your comments so far do not point towards any peyronie's plaque being present in my view. 

Title: Re: worried about my husband...
Post by: Worriedwife on July 08, 2010, 12:01:32 PM
I got back from a trip last night, and my husband voiced a concern about strange "indentations" on his erect penis. I, trying to assure him it was nothing, googled it and came upon "peyronies disease" and have not got us both concerned. He is 28, I'm 27- after researching it sounds like he may have the "hourglass" indentations. He's only noticed it very recently, he's also had occasional pain during an erection or orgasm... I never thought anything of it as he didn't act like it was crazy painful or seem concerned so I just thought that was "normal". He's always had a slight curve, but again, thought it was normal "hanging a little to the left". You can't really see the indents by looking, but by feeling, and now that I read about the hard "plaque" he says he can feel something in there. He's never had any erectile disfunction, and never had any issues with orgasms, but again- I have nothing to compare it to... So not sure I would know if anything was "abnormal". I just feel so awful wondering if I was too rough at some point and caused this... I never knew anything like this could happen. Now I'm worried about hurting him more.... We are going to see a urologist... But in the meantime... Should we refrain, or just be gentle? Does "girl on top" position tend to cause this? Because that's one of our fav positions and I need to know if that, or anything else should be avoided. If this is just the first "phase" could his penis go on to get the curvature in addition to the hourglass indents, and does the hourglass tend to cause erectile disfunction down the road? I am just so fearful of the prospect of not being able to take care of my man... I know this has to be so much more scary for him- how can I support and encourage him thru this sensitive issue? Any advice is greatly appreciated. Thanks-
worried wife
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: slowandsteady on July 08, 2010, 02:46:41 PM
For me, girl on top is more painful, specifically on the top of the penis closer to the base.

Two simple things I recommend trying that really have no downside is to get vitamin D levels at least to 50 ng/ml (get D3 in a gelcap, not any dry version) and take a magnesium supplement (I like magnesium malate or glycinate, but avoid taking so much that loose stools result). These two supplements are good for anyone, not just those with Peyronies Disease.

s&s
Title: Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
Post by: alsofilm on October 10, 2010, 07:11:46 PM
What is the definition of "Peyronie's Disease" anyway? A better term, which is also used, is "penile fibrosis".  If you have an injury, and scar tissue forms and causes a bend or a hinge, do you have "Peyronie's Disease"?  Sure, if you want to call it that,  and I think that's how the term is becoming used today. Someday when it's well understood we may have a differentiation of terms reflecting the various causes of this fibrosis.
Title: Newbie
Post by: jcb on October 23, 2010, 10:12:16 PM
Don't know if I am putting this in the right place or not. Have browses the site a time or two and am thankful it is here. Had finally decided to find a source for Verapmil when I found this site and decided to hold off as money is in fact a factor.
I had noticed some discomfort (really could not call it pain, like a pebble in your shoe)when I had an erection about 18 months ago. No noticeable curvature at this time.About 6 months later I noticed a rather hard elongated mass when feeling of my penis. With my Mom and Dad both killed by cancer I went to see a urologist fearful that this was a cancer of some sort. He very briefly examined me and told me I had Peyronie's. He further explained that the only treatment was Verapamil and this was an off label use that was quite expensive and most insurance companies would not cover it. The only other alternative was surgery which left many men impotent. Yea, that is just what I want. With no real pain, no significant curvature and a very limited household budget I folded up the prescription and placed it inside my Daytimer and went on about my merry business content that I did not have cancer.
Rather recently, I took hold of myself while erect and was surprised to feel this 90 degree bend straight up about 2/3 of the way down my penis. I foolishly attempted to straighten it out. Well, that ain't gonna work.
It does not appear to cause my wife any real discomfort. (After 32 years that opportunity does arise very often anyway.) Just requires some adjustments on my part as to range of motion etc. Does not seem to affect the quality of my erection but does seem to impact the "quality" of my orgasm. (Maybe that is the BPH.)
Anyway, I am thankful to find a site that does not have a profit motive.
Since I have not had any treatment I am hoping I can learn for you guys. Can anyone tell me where on the site I will find a suggested initial treatment. There is so much here! Thanks for any guidance you can provide.

James