Open Questions on Peyronies Disease (That won't fit under any of our current topics)

[soonerokie]

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!!!

[Tim468]

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

[Rocketsfan34]

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

[LWillisjr]

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

[Tim468]

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

[sams]

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?

[jon]

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.

[George999]

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

[Ralf3]

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.

[George999]

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

[sams]

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

[Ralf3]

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..

[George999]

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

[LWillisjr]

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.

[sams]

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

[beginer]

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

[joe]

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.

[beginer]

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

[Old Man]

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

[joe]

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.

[George999]

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

[Old Man]

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.

[nemo]

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

[George999]

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

[nemo]

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

[George999]

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

[wayne999]

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*!)

[LWillisjr]

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.    

[beginer]

Irwillis I was just wondering what are some other causes that may cause a bent/ curved penis?

Thanks
B

[LWillisjr]

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  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.

[beginer]

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.  

[jackisback]

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.

[jackp]

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

[wayne999]

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?

[beginer]

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

[jackp]

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

[LWillisjr]

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.

[jackisback]

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.

[wayne999]

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?)

[alcohen]

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.  

[bodoo2u]

What do you mean by "pricking" the penis?  

[jackp]

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

[Old Man]

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

[LWillisjr]

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.

[alcohen]

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.

[jav]

Hello George: May you tell me what have you discovered for stoping the glycation process?. Sorry for my english. I write from Spain.

[Hawk]

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

[jav]

Thanks very much, Hawk-

[George999]

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. 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 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.  - George

[jackp]

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