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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
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Author Topic: Open Questions on Peyronies Disease (That won't fit under any of our current topics)  (Read 438479 times)

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Hawk

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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.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

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Does this Sound like Peyronies Disease? by: Schoul
« Reply #1 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?
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Hawk - Updated 10/27/18 - Peyronies Society Forums

lost2

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 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                                 
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bholiday

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do i have it
« Reply #3 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?
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phil

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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?
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Joshua

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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.
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phil

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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.
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Joshua

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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
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Hawk

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Re: Antibiotics - Peyronies Disease - Scar Formation
« Reply #8 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
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Hawk - Updated 10/27/18 - Peyronies Society Forums

phil

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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?
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solat

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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?
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j

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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. 

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solat

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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?
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dcaptain

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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.   
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Joshua

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reply to Solat
« Reply #14 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
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Hawk

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Re: Phil - apirin /scarring
« Reply #15 on: December 07, 2005, 10:47:21 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.
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Larry H

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Re: Reply to NewsRoom post by "j"
« Reply #16 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
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j

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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?










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Hawk

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Re:j - Does anyone get better from treatment?
« Reply #18 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.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

j

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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. 


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roadblock

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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
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j

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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 Erectile Dysfunction, 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.
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Old Man

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Re: Note to j regarding improvement vs cure
« Reply #22 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
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SteveW

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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?
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20 years of Peyronie's / Erectile Dysfunction
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

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stretching not possible?
« Reply #24 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.




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Old Man

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Re: Comments relative correlation between Peyronies Disease and Dupuytren's
« Reply #25 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
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Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

j

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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?


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Hawk

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Re: j - Stretching Peyronies Disease scar tissue
« Reply #27 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
Quote
All 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.  

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Old Man

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Re:Note to j and Hawk about VED usage
« Reply #28 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.
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roadblock

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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.
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golfballa

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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.
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Penis Shortening, Peyronies Disease and Lovers Reactions
« Reply #31 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
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Barry

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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
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Hawk

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Re: BlondeGuy
« Reply #33 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 Erectile Dysfunction has never caused my wife to do anything but be supportive.
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Blondeguy

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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.
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Larry H

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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
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Re: Apology to J for overlooking a question
« Reply #36 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
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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.
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youngpain21

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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.
     
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roadblock

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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
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Re: Reply to Youngpain21
« Reply #40 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
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j

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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.
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roadblock

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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.
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youngpain21

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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.
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Hawk

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Re: To YoungPain - Urologists in Ohio
« Reply #44 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
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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
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Upcoming AUA convention in Atlanta
« Reply #46 on: April 07, 2006, 10:22:41 PM »

Is anyone planning on going to this conference?  Can a non-AUA member attend? 
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Naturally, non-Peyronies Disease curved penis. Please advise
« Reply #47 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.
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Hawk

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Re: Leftie - Non-Peyronies Disease Curve
« Reply #48 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.
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Old Man

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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
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