CAUSES of Peyronie's Disease - started 2005

[LWillisjr]

I read recently where there seems to be a correlation between men with Peyronie's Disease and being on high blood pressure medication. The logic seems to be that a side effect of many blood pressure meds is that they can cause a light amount of ED or at least erections that were "not quite as firm" as before. Still fully functional but slightly weaker. Same thing happens as many of us get older. Erections are still firm enough for sex, and many of us don't want to admit that just maybe we do have a slight amount of ED. This really opens up the whole definition of what really is ED or even the onset of ED.

Anyway...   The belief is that with a slightly weaker erection (whether due to aging or due to blood pressure meds), that this makes one more susceptible to trauma to the tunica and therefore triggering the mechanism which causes Peyronie's. I was just curious if anyone has seen any similar information on this? Maybe we need to get the word out to those on high BP meds.

[George999]

BP meds work in a range of different ways.  The most risky in terms of Peyronies are the beta-blockers.  This is because the tend to reduce bloodflow to certain tissues, including the TA.  This is for the purpose of reducing the load on the heart as it pumps.  They are especially useful in treating heart failure.  However they are also widely used as a BP med.

Then there are the inexpensive and popular "water pill" thiazide type drugs, calcium channel blockers and numerous other less widely known types.  These may have some degenerative effects on penile health.  Ironically, Verapamil is actually a calcium channel blocker.

But there are also BP drugs that probably would be protective in terms of Peyronies.  These would be the ACE inhibitors which block angiotenson converting enzyme (which is extremely inflammatory), and the ARB's, some of which are actually anti-fibrotic to boot.  I personally like Cozaar.  Mycardis is another good choice.

AND, there are new emerging BP drugs that are even more powerfully anti-fibrotic.  But these are not yet widely available UNLESS you happen to be severely diabetic.

 - George

[Tim468]

I *think* what George is saying is that the comments about arthritis and Peyronies are sort of right for the wrong reasons!  

I guess I agree with that. Since they did not go on to talk about molecular mechanisms, I think it is more of "even a blind pig finds an acorn sometimes".

Tim

[George999]

What I meant was that both Peyronies and Arthritis are caused by degenerative changes to collagen and elastin in the affected tissues.  I don't know how I can put it in more simple terms.  That process lies at the root of most human diseases.  And we are approaching a point where that process can be targeted directly which can avoid a lot of the complexity involved in attacking those diseases as a higher level.  - George

[Tim468]

I would say, more cautiously, that MAY be true. There may be yet smaller details that make the processes quite different we are unaware of.

The thing that makes me curious is this: Why my penis? Why not my joints, or my eyes? Avoiding the occasional feelings of "Why me?", I do wonder why my penis?

Tim

[LWillisjr]

Tim,
I agree with you. While both may be caused by degenerative changes, I don't have arthritis but yet I did contract Peyroines. And yes....... why my penis!

I also ponder why is it that the curve is most often upwards. If it truly is a degenrative cause, then why isn't the result more random......    curves of random directions. There are documented cases where curves are more often upward, and then less often left or right.   Why?

[Hawk]

Tim,
I agree with you. While both may be caused by degenerative changes, I don't have arthritis but yet I did contract Peyroines. And yes....... why my penis!

I also ponder why is it that the curve is most often upwards. If it truly is a degenrative cause, then why isn't the result more random......    curves of random directions. There are documented cases where curves are more often upward, and then less often left or right.   Why?

Becuse that is where the plaque more frequently forms  

Reminds me of the joke: Do you know why when geese fly south bucking strong winds for hour after hour in a structured "V" formation, that the one side of the "V" is almost always longer than the other side?

Answer:After extensive studies, scientists have discovered that there are more geese on that side.  

[sgtnick]

/

[George999]

sgtnick,  Vasotec is an ACE inhibitor.  ACE inhibitor's are REALLY GOOD blood pressure meds.  They help to lower inflammation and thus are probably helpful for Peyronies.  The only better BP drugs are the ARB's I listed below, but they are still on patent although Cozaar is VERY close to coming off patent.  Thus they tend to be more expensive than the ACE inhibitors.  But Cozaar DOES have low level anti-TGF-beta-1 activity which would be synergistic with the Pentoxifylline.  But that would be something you would have to discuss with your doctor.  So glad to here your Peyronies seems to be responding.  Just having it not get worse is a blessing in and of itself.  - George

[Hawk]

Why do you take the 50 mg of Trazadone?  If it is solely for night-time erections, I think it may be double the dose you need.  I would at least try a half dose for a week and see.

[Darren123]

Ovarian cysts can be referred to as small sacs filled with fluids that get developed in ovaries of a woman. Most of the cysts do not cause any harm. However, some of them might cause problems like bleeding, rupturing, or pain. One of the ways of getting rid of ovarian cysts is surgery.

In ovaries of any of the women falling in the childbearing age group, that who aren't on pills, there are some cystic structures, continuously coming as well as going. These are essential to have the egg developed and released thereafter. As they form a part of general ovarian function, 'physiological' is the term given to them.
The cystic structures which develop in ovary and which aren't part of ovulation cycle are called 'pathological ovarian cysts'. These growths can also be termed as 'tumors'. Tumors can be divided in to 2 categories: malignant, i.e. cancer or benign. Pathological ovarian cysts consist of various types. Certain cysts contain mucous, whereas some contain old blood. These kinds of cysts are common in young women who bear an array of the tissues in a disorderly manner. These tissues are usually found in fat, hair, bone, teeth, or thyroid gland. The biggest drawback of pathological cysts is that there is no regression on their part. The accumulation of fluid can take place tremendously. Moreover, as the cyst is filled with fluid, its growth can take place rapidly. This enlargement might take a few weeks or months.

For more information Ovarian Cyst A to Z
 

[Old Man]

darren123:

Ovarian cysts? What in the world does these have to do with Peyronies Disease? You must have gotten on the wrong forum somehow. I think you should rethink what you are doing.

Old Man

P.S: Read sgtnick's post in the On The Light Side topic.

[ThisSux]

What I meant was that both Peyronies and Arthritis are caused by degenerative changes to collagen and elastin in the affected tissues.  I don't know how I can put it in more simple terms.  That process lies at the root of most human diseases.  And we are approaching a point where that process can be targeted directly which can avoid a lot of the complexity involved in attacking those diseases as a higher level.  - George

It would be interesting to see how many people with peyronies have the HLA b27 gene.

In fact... I see this:

The Genetic and Bacteriological Aspects of Peyronie's Disease .
A significant association between Peyronie's disease and HLA-B27 was found (p = 0.02).

http://linkinghub.elsevier.com/retrieve/pii/S002253470165362X

I have found a few other studies suggesting a weak association. Of course there may be several causes of peyronies or more precisely  the sorts of connective tissue changes that lend to peyronies may be caused by multiple means.

[George999]

If you really want to get interested in the possible genetic link, check out "epigenetics".  It just so happens that our genes don't actually program us any where near 100%, because those genes can be turned on and off, thus either making us sick, or, alternatively, MAKING US WELL   .  And your lifestyle and what you eat can turn them on and off.  Hello!  - George

[Ptolemy]

I have the HLA B27 marker. However, Peyronies was brought on by a bend during sex. Possibly without the genetic marker I would have simply healed. Who knows!

[hornman]

George-  How is progress with your anti-glycation lifestyle?  Are you following any specific book or diet?.

[George999]

George-  How is progress with your anti-glycation lifestyle?  Are you following any specific book or diet?.

Well, I am continuing to pursue it, although not nearly as vigorously as I would like.  The diet I have down pretty well.  Lots of fruit in the morning, veggies at lunch, nuts for snacks, and a little variety for supper.  With no refined carbs or heavy starches.  It has resulted in really great weight control and, in many ways, excellent health.  Where I am really letting things slip is on the exercise side.  I should be getting more.  But my work really keeps me active and I do a lot of walking, albeit not on any regular schedule.  But I really wish to get back to the treadmill.  I also have an elliptical at my disposal now and would like to make better use of that.  But lately I have been fighting a super tight schedule and working six days a week which is really sapping my energy.  I never really have followed a formal diet but I draw a lot on the "YOU: On a Diet" book by Oz and Roizen.  It has been really helpful to be on the Pentox as well.  Sometimes I regret not have started using it sooner.  I am definitely seeing benefit from it.  I am also back on most of the supplements I was previously taking.  - George

[hornman]

Thanks for your reply George.  I was at the library checking out some of the various healthy diet books for controlling diabetes, hypoglycemia, etc.  One recommended low carbs.  One recommended low protein and fat.  It seemed that they all conflicted.  I will check out the Oz book.  Thanks.

[George999]

The problem with most diets is that they tend to demonize certain types of food such as carbs or fat.  The reality is that there are good carbs and bad carbs, good fats and bad fats, good protein and bad protein.  If you know which is which, it can result in awesome changes in your weight and health.  The other diets just don't work over the long term.  - George

[nemo]

Guys, I didn't know where to post this so ...

I just found a fascinating article on a Propecia "Victims" forum regarding testosterone replacement and the possible benifit it might hold for Peyronies Disease sufferers.  The doctors interviewed (one is Dr. Irwin Goldstein) feel that tissue fibrosis, which causes some degree of venous leakage, is possibly reversible through androgen therapy ... in other words getting the hormones in balance can lead to reversal of tissue damage.

I stumbled across this because I feel Propecia is what started my testosterone issues several years ago, and I'm even inclined to believe it contributed to my Peyronies Disease (I'm not the first to suggest this androgen/tissue relationship - there appears to be some science to back it up).  In fact, that's why it's discussed on the Propecia forum - several cases of Peyronies Disease seem to have a mysterious relation to Propecia usage.

I'm visiting Dr. Romeo Mariano in Monterey, CA next month to try to once and for all address my hormone issues.  He's considered one of the nation's foremost experts on male hormone treatment.  Unbelievably, just like with Peyronies Disease, most doctors (even some endocrinologists) either don't know anything about hormones or try to convince you your low test results aren't really the problem ... it's very frustrating.

Man, if Testosterone replacement also helped reverse any Peyronies Disease damage I have, that would be a real Godsend and I'd feel like the Universe was finally throwing me a bone!

Eisenhower

http://www.propeciahelp.com/forum/viewtopic.php?t=346

[ocelot556]

Nemo,

I am 100 percent behind you in that belief. I was on propecia for a little less than two weeks, and in that time I developed Peyronies Disease. It was not a coincidence, and I think it's clear that since TGF-B is involved in both Peyronies Disease and the mechanism for hair loss there has to be some sort of relationship.

Keep us updated on your testosterone test.

[jackp]

Nemo
Testesterone Replacement (TRT) will not stop or help Peyronies.
I have been on TRT even before my Peyronies started in 1995. Still on the T shots today.
My first uro had me on gels for years that did little to no good. Changed doctors and started shots, temporary boost but 300mg every three weeks was not enough for me. Could not get him go give me enough to bring my level up to even mid range, It stayed at or just below "normal".
Last year I was talking with my Primary Care Physician (PCP) and he said he could help me. He did the blood work and I was 120 which was way below normal of 250. He started me out at 300mg every 10 days and I started to feel a lot better. May he ran the blood work again and I was 426 with the top of the range being 1100. He increased my shots to 400MG every 10 days.
I am feeling much better. I do not think I would have survived the last hospital stay of 9 days if I had been weak.
All this to say that in me TRT has not helped Peyronies, ED, Venous Leakage and Corporal Fibrosis. Among the many benefits is loss of fat, less fatigue, more active libido and a greater feeling of well being.
Hope this helps
Jackp

[nemo]

Jack, is your doctor monitoring your bloodwork for Estradiol?  From the reading I've done, it's clear that in TRT, it's important to monitor Estradiol (Estrogen) as much as Testosterone, because the body tries to convert T into E, and E is a libido killer among other things.  It appears a lot of general practice docs think you can slap on a T patch and be done, but in truth that often goes great for while until the body stops producing its own T because it knows foreign T is coming in, T values plummet, and then it starts converting all this new T you're putting in into Estrogen.  The crucial balance between T and E appears to be much more important than a high T number alone.

Some specialists now are not even starting with T replacement, but rather giving drugs that lower your E ... then the testicles kick in and start raising your T naturally.  This is actually what I'm hoping for.  Anti-Estrogen drugs like Arimidex are used, and an injectable called HCG.  

If you're on T replacement, definitely look into your E situation ... this appears to often be overlooked even by docs who are supportive of TRT.  The Endocrinologist I visited didn't even know why I was asking to test Estradiol with Testosterone ... I knew right then I needed to move on.  

nemo

[George999]

Perhaps Tim could also comment on this, but my own perception (and I am not a doctor or pharmacist) is that an ACE inhibitor like Vasotec would be very unlikely to cause ED.  It is important to understand that hypertension ITSELF can cause ED because it tends to deteriorate the vascular system.  Some hypertension drugs are pretty notorious for ED problems, but I don't believe that ACE inhibitors are really high on that list.  I took ACE inhibitors for years and never had ED problems, ever.  However, everyone reacts differently to a particular drug.  The real danger that I see in this is that if you complain too loudly about Vasotech, you might end up being put on a BP med that really has ED issues.  An ARB might be better on this level, but ARB's are not quite as effective in terms of BP control and they are significantly more expensive.  The reality at this point is that ACE inhibitors are just REALLY GOOD blood pressure drugs.  There are, in my thinking, much worse options in terms of blood pressure control.  Additionally, you have to realize that if you can get your weight down significantly, and most guys can, you might well be able to ditch the BP drugs completely, AND realize some significant health benefits on multiple other levels as well.  I HIGHLY recommend the book "YOU: In a Diet" by doctors Oz and Roizen.  It enabled me at 6' 0" to get my weight down from 195 to 155 AND keep it there after numerous fruitless diet attempts.  Its a metabolic approach to dieting unlike any other approach out there, and it works.  - George

george 999  -  on aug 27 we talked about ACEs & ARBs.  Which type of BP meds are least likely to cause ED?  I have a feeling that  vasotec is preventing me from achieving a natural erection.  Cialis does the trick so apparently something, maybe pentox?, is messing with my head (no pun)  Any suggestions?

[Hawk]

Guys,

I don't ask much. Please do me a favor and read this thread starting at the bottom.  It is 4 posts - https://www.peyroniesforum.net/index.php/topic,139.0.html


Thanks!

[George999]

Nick,  Hawk is only trying to admonish us to CHANGE the SUBJECT line from (in this case) "Re: Causes of Peyronie's Disease" to something more relevant.  This way it is easy for folks to intelligently search over the various posts.  All of us have at one time or another failed to do this and have incurred Hawk's wrath as a result.  So please keep posting, just try to remember to modify the default subject line as you do.  Also you can earn brownie points around here for going back and editing your previous posts and modifying the subject lines creatively in them.  And, in fact, if you look over the posts below carefully, note that when Hawk said "Guys", he was referring to a bunch of guys, not just you.  - George

[Old Man]

sgtnick:

Hey my friend, don't give up the ship so fast! We need any and all posts and help we can get to keep this forum up to speed with good information.

I have been through the same feeling you might have at the moment on another forum that is now gone down the drain. We need all the help we can get to keep this forum up and running.

What the administrator desires for us is to place a subject line on each post that relates directly to the topic heading. That way, he does not have to spend time moving posts around. At the same time, it gives any and all readers the best possible arrangements of information, etc.

So, stay with us, we need you!!!

Old Man

[Angus]

Type just a word or two in the "Subject" line after you click "Reply" so it appears like the subject for this post. The forum is growing and this will help us keep it from becoming a behemoth that is impossible to find a discussion or topic. It will help the "search" function find things when we search for that buried post we can't find.

[Fred22]

I'm 64 years old.  Been experiencing penile pain since April of 2006.  Brief Summary:
May 2006:  My GP (actually a nurse practioner) prescribed 10 day course of Cipro which did no good.  2006-2007  3 trips to board certified urologist for yearly PSA and rectal prostate exam plus a cystoscopy. No problems were found.  On each visit to uro I mentioned the pain and he basically said he didn't know what could be causing it and offered no further tests or treatment. Took a very casual attitude.  In the meantime I'm in almost daily pain and taking 800 to 1000 mg. ibuprofen almost every night.  
April 2008:  Woke up one morning with a partial erection and noticed an upward curvature.  I immediately concluded "Peyronie's".  It was again time for my yearly prostate exam so this time I decided to go to a different uro.  I'm in Memphis and the University of Tennessee Med Group is supposed to have some of the best drs. in the area.  I called one of their urologists (in fact I think he's the chairman of the urology dept.) and before making an appointment, made sure that he was familiar with Peyronies Disease and had a treatment protocol.  This Dr. is a professor at UT Med school and practices 2 days a week.  I was assured that he was well versed in the treatment of Peyronies Disease. Now I'm thinking I'm on the right track.  I saw him last week and he felt my penis and said that I had a small amount of plaque at the base.  Diagnosis: Peyronie's.  He immediately said that "We need to get you on 400 mg. vitamin E per day to soften up the plaque and come back in 6 months".  He said something like 50% of cases stay the same, 25% get better and 25% get worse. I mentioned Pentox which he had never heard of. Said it wasn't mentioned in any of the research lit. that he had read. To his credit he didn't want to do any kind of injections, even to induce an erection as it could cause further scarring. He said to take a picture. He was familiar with Verapamil and said that some of his patients had said that they had improved using the transdermal type. He said "The mind is a very powerful thing", leading me to believe that he didn't have much faith in Verapamil and that these patients were merely experiencing the placebo effect.  He said he could give me a script for a VED, but that if I can get an erection then I really don't need one.  I'm able to get a firm erection, but my wife and I have had little sex in the last 2 years due to the pain.  He encouraged me to have sex as that could be beneficial.  He went on to say that there is very little research in this area as all the research funds are going for cancer and heart research because those are the big killers in our society.  I asked him if he had heard of the Auxilium clinical trials with Xiaflex and he hadn't.  
So at this point I'm supposed to take 400 mg. of vitamin E and go back in 6 months.  My PSA had gone up from 2.2 last year to 3 and he seemed more concerned about that, but I've read that I'm in the normal range.  My question for you guys is, "What do I do next?"  I've read very "mixed reviews" about vitamin E and was disappointed that this was all he had to offer.  I plan to go ahead with the vit. E.  What's the best type to use? (Mixed tocos, alpha, gamma, a good brand and place to order it on the net, and any further suggestions from anyone on this forum.)  The pain subsided somewhat in May of this year and I'm no longer taking the ibuprofen although I'm experiencing some pain almost daily. Sometimes aching, sometimes burning either during urinination or afterwards (my urine sample was clean). The Dr.said that with Peyronie's I should only be feeling pain when erect, but I've read many posts on this forum that seem to contradict that.  Anyway, sorry for the long post, but any suggestions would be greatly appreciated, especially about the type of vit. E and other options.  Thanks.

Fred        

[George999]

Fred, It would seem to me that what you have experienced is pretty much classic Peyronies.  It manifests itself in different ways in different people and most urologists don't seem to understand that.  I, too, often have urethral pain that seems unrelated to infection.  Inflammation does seem to spread to some degree within the body AND researchers have just discovered that nerve impulses, if sufficiently intense, can actually jump from one nerve pathway to another, thus causing the brain to sense a pain or other sensation that is not actually there.  I would DEFINITELY take the advice on the Vitamin E.  The full spectrum kind is best.  A number of web vendors sell a variety of brands.  400IU of alpha tocopherol should be accompanied by around 300mg of gamma tocopherol.  I would also start on 500mg of Acetyl L Carnitine 4X per day.  You may also find Mangosteen juice to be helpful.  It has helped me in the past significantly.  The best treatment of course would be Pentoxifylline.  I simply can't imagine a Peyronies specialist who has never heard of it OR a Peyronies specialist not aware of Xiaflex, but the doc you saw may in fact be a top urologist but NOT a Peyronies specialist.  I can also tell you that I just the other day, by accident, ran across a web site of a doc in Kentucky, which is not far from you, who not only works with Peyronies patients, but also seems very aware of Pentox.  I know absolutely nothing about him.  His name is John Tuttle, MD and I have hyperlinked his site to his name.  You might want to check with him about getting a second opinion.  He might just be willing to write you out a script for Pentoxifylline.

I would not be TOO worried about the PSA, BUT I would keep an eye on it.  One thing to know about PSA is that it fluctuates with body weight.  Thus, if you lose body weight, your PSA level WILL go up.  A lot of physicians are unaware of this.  In fact some researchers worry that overweight people can have NORMAL PSAs and still have cancer because extra body weight causes PSA levels to go down, BECAUSE a static amount of PSA gets diluted in a dynamic amount of blood.  More body weight, more blood, lower PSA number.  Less body weight, same amount of PSA excreted into a smaller amount of blood, PSA level rises.

Too bad that Uro is unaware of Pentox but a lot of uros are not aware of it.  I had to request a referral to Dr. Lue in SF.  Now my primary uro is keenly interested in Pentox and just told me on my visit with him today that he has been investigating it some on his own and has already run across doctors that are prescribing it.  As a community, we just have to do our best to make as many uros as possible aware of Pentox as a treatment for Peyronies.  In any case, I wish you the very best!  - George

[Fred22]

George,

I'm still having trouble navigating this forum.  I hope I hit the right "Reply" icon. The only one I saw was directly above your reply to my post so I assume this will appear above your message.  Anyhow, thanks for the information.  I'm not asking for an endorsement of any particular product but can you direct me to a website that is reputable and possibly a good brand of the varieties of vitamin E you recommended.  I'm also going to check with either my GP or even my last urologist to see if I can get a script for pentox.  Thanks again.

Fred

[Tim468]

I hear sometimes of stuff from patients that I have never heard about. If it sounds flaky, I say so (nicely), but I try to listen and learn.

It never fails to amaze me that a urologist who does this for aliving does not know about Pentox!

Fred, you case is all too common (in terms of seeing docs and getting that response). Old posts here by me and George do have some listed brands for vitaim E. You can do a search and then click on "advanced search" and search by poster, with keywords. You could try my name or Gearoge and include "vitamin E" and "buy" or "source" or so on and I bet you will get a hit or two. Normally I use a broad spectrum E from Solaray (I think!)(that's why I search the forum for what I said before!).

Tim

[ron]

Viagra definetely caused Peyronies Disease with me. If it wasn't so embarrassing I'd sue Pfizer. To this day there are no warning at all that viagra can cause Peyronies Disease. There should be a warning not to take too large a dose, not to take if have nighttime erections and that usage delays ejaculation which leads to excess trauma. The only warning is about getting a 4 hour erection which probably does happen at night when sleeping.My guess is that many men have had Peyronies Disease develop from viagra but do not report it. I have tried to notify Pfizer but their website has no feedback, comment section. Thought viagra was something great, ended up being a disaster.

[Hawk]

Ron,

Welcome to the forum.

How can you be sure Viagra caused Peyronies Disease rather than Peyronies Disease just followed the use of Viagra?

[Kimo]

Ron,,,I don't believe that it was viagra that caused your case of peyronies,,,Not trying to go against you but!

I was hit with peyronies after my first dose of viagra,,,but looking back in retrospect,,i had and underlying previous injury from rough sex with the wife,,,viagra just triggered it into action. I do not blame viagra,,,and i continued to use it and feel that using viagra actually helped me to get back straight along with the use of Topical Verapamil and vita-E and massage....

I still use viagra and am not worried that it will cause peyronies again,,have been using viagra now for about 11yrs. This is just my opinion and experience,,,,,,,,,kimo

[Iceman]

KIMO - dod you say your curve was fixed?? if so what did you use?

thx

[George999]

REMEMBER, guys, that Peyronie's is caused by a confluence of a combination of factors, not just by one thing.  So, while Viagra might be completely harmless in a normal setting, given the right metabolic environment, it just might be able to tip the equation.  But huge numbers of people are taking Viagra and not ending up with Peyronie's, so the reality is that Viagra in and of itself does not cause Peyronie's.  Its always a combination of factors occurring simultaneously that causes Peyronie's.  - George

[alcohen]

I went to my urologist after having early symptoms who listened to what I was saying and told me that I needed to get blood flowing down there as soon as possible.  I had felt pain awhile back while being masterbated by my girlfriend and then the symptoms had started.  He prescribed me trial samples of Levitra and Cialis.  He made sure to put in the coding that he had given me these so that my insurance did not cover the visit.  He told me to take the Cialis and get as much blood pumping as possible.  I took the Cialis and my girlfriend tried to get me off.  About halfway through, I felt an extremely high amount of pain.  It felt sort of like tearing and it was right in the middle on the top of my shaft.  I told my girlfriend to stop and as soon as she stopped my erection went away immediately.  I had not had an experience like this before which is what I have seen is a major factor leading up to Peyronie's Disease.  The factor being pain followed by an immediate loss of an erection due to a tearing of the erectile tissue.  Immediately after that, my penis would get less and less hard when getting an erection.  In the days following the event, I began to feel very itchy on the top of my penis right where the pain had occurred.  About a week later when I was investigating my penis I found a thick cord running from the base of my shaft to the top of my penis.  I found that this was very sensitive to the touch and that whenever I walked and felt pain it centered on this area.  This appears to be Peyronie's plaque.  

When I went back to this urologist I told him what had happened and he said that I needed to stop doing anything immediately.  He said that my girlfriend was being too rough with me.  I told him what he had told me last time and what he had prescribed me.  He said that he had done that because he thought that I was not having any pain when I had an erection but only that I could not get it up.  This was a preposterous comment as that was the entire purpose of my first visit.  Because of the severe pain when getting an erection!!!!

I became flustered at this point and began mentioning Peyronie's.  He told me to stop looking at the internet and that I was driving myself crazy.  He gauranteed me that I would be all better in 3 weeks if I stopped obsessing over it and looking at it and touching it.  He said that if I was better that I could cancel my appointment.  He made me repeat back to him that he was the doctor and that he knew what he was talking about.  It was very demeaning and upsetting.  

I ended up cancelling my appointment but obviously I was not better.  I did not want to go back to this urologist as it appears what he suggested for me to do was a direct result of what is happening to me now.  Before I went to him, I had pain when I had erections but they were still very hard and I was able to get off.  Now, it has been almost 3 months since I have had an orgasm that is not a wet dream and my erections are very soft.  I also have the obvious cord-like plaque on the top of my shaft.  It was a very clear divide.  Perhaps if I had been prescribed Pentox or an anti-inflammatory at the initial visit I would have gotten better instead of having a tramautic experience happen that obviously led to further and possibly permanent scarring.  

Am I eligible to sue for malpractice because of his negligence?  He tried to cover his tracks by explaining that he did not realize I had pain with my erections.  The way I see it I was no listened to and given a bad treatment option that scarred me further.  Life as I knew it is completely over.  I love to go the gym and go running but since the Cialis incident I can no longer run or due physical activity of any kind without hurting like crazy.    

Any assistance regarding malpractice would be great.

[ron]

Kimo, Hawk and George999--

Well I am sure there could be other possible contributing factors to developing Peyronies Disease, in my case I am 100% sure I would not have deveoped Peyronies Disease if I had not taken viagra. To give just a couple additional reasons why-- when I would climax or  be near climax I would get a rush of blood and pressure and feel a "tearing" sensation in the area where I eventually developed a plaque. This concerned me, but again I had no reason to fear injury and had never heard of Peyronies Disease, etc. Also, using viagra caused a major delay in climaxing which led to much more trauma . I developed stretch lines on glans which is just another indication that too much pressure was being generated.

I started taking viagra periodically(once every week or two) at around 43 and in hindsight it was probably causing damage a year or two into usage per  erections were becomng significantly smaller. Very noticeable bend and indentations occurred at 48. approx. 13 months ago. Have read from doctors who say should not take ed drugs if have night time erections per can cause injuries and Peyronies Disease.

I was taking it more as a sexual booster. In hindsight, did not have serious ED, was just getting old, back troubles, trying to  keep up with the ladies, etc.

Again, had no reason to feel not 100% safe.

Kimo-- where buy Topical Verapamil and how long have to take, etc.  Thanks.

Ron

[Hawk]

You know what they say about opinions, everybody has one.  Here is mine

Viagra generally results in the a reduction of Peyronies Disease causing conditions by increasing circulation which delivers oxygen and reduces TGFB2 and collagen formation.  It is part of the treatment for Peyronies Disease.  I suppose a person that does not need Viagra could over-do it but that would most likely result in priapism (prolonged erection) that reduced oxygen to the penis.  I cannot conceive of a person with ED of any degree getting an erection so tight it caused stretch marks.

I suspect that other factors were at work.  Either Peyronies Disease was already slowly at work to start with (thus the weaker erections) or the weak erections and reduced nocturnal erections set off an episode of Peyronies Disease.  The timing of the Viagra often has it showing up near the time of Peyronies Disease formation because if there was not a n obvious penile functioning problem Viagra would not be prescribed.

Often the firm erection of the Viagra reveals Peyronies Disease to a person that never noticed it in the weeks prior to Viagra because they did not have an erection sufficient to reveal the Peyronies Disease.

Hawk

[newguy]

Viagra generally results in the a reduction of Peyronies Disease causing conditions by increasing circulation which delivers oxygen and reduces TGFB2 and collagen formation.  It is part of the treatment for Peyronies Disease.  I suppose a person that does not need Viagra could over-do it but that would most likely result in priapism (prolonged erection) that reduced oxygen to the penis.  I cannot conceive of a person with ED of any degree getting an erection so tight it caused stretch marks.

I suspect that other factors were at work.  Either Peyronies Disease was already slowly at work to start with (thus the weaker erections) or the weak erections and reduced nocturnal erections set off an episode of Peyronies Disease.  The timing of the Viagra often has it showing up near the time of Peyronies Disease formation because if there was not a n obvious penile functioning problem Viagra would not be prescribed.

Often the firm erection of the Viagra reveals Peyronies Disease to a person that never noticed it in the weeks prior to Viagra because they did not have an erection sufficient to reveal the Peyronies Disease.

Hawk

I agree. My view is that an already existing problem may have played a primary role, and this may have become attibuted to viagra use (because we all search for the reasons why). Ron, regardless of the reason you have come to the right place in relation to helpful treatments!

[Tim468]

Ron

I would not be too certain about why things go the way they go - that is the devilishly hard part of dealing with this disease; we never know for sure what causes it.

"Stretch marks" could be evidence of miniscule changes induced by TGF beta-1 to the health and shape of the skin. Particularly on the glans, there can be changes seen with Peyronies that are subtle but real. I found very tiny bridging "ridges" of scar like tissue running across the coronal sulcus (from the head to the shaft. The first to show up was at midline and it seems part of the ongoing changes in my midline anterior shaft. I now see a couple on either side.

Yet, I am not sure if they are there because I am using a VED, or if they would be worse if I were not doing the VED!

We never know. And if we get too certain, then we run the risk of making false assumptions and doing the wrong thing for our health. George recently wrote of making such a mistake in assessing the effects of one of his supplements.

I think that your theory about Viagra needs to be considered very carefully. It appears that treatment with it for Peyronie's is now viewed as less important than Pentox by Tom Lue (recent article). I too worried about it's possible role in making me worse. For now, though, I use daily low dose cialis (5-7.5 mg per day) for a constant increase in my NO activity and it seems to be of value.

Tim

ps - one theory holds that Viagra may lead to hard enough erections to notice the problem as Hawk said. A "tearing" sensation localized to the region suggests strongly that you had a problem there for a while so I guess it is possible that a harder erection and/or more vigorous sex could have led to a worsening of a problem.

[Dave46]

I am new to the forum and developed Peyronie's almost two years ago (then age 44)....no bending but several hourglass deformities and other internal nodules.  Now still sexually functional, but slowly loosing length and girth.  Have tried vitamin E and topical Verapamil with no affect.  After reading some of the postings, I am wondering if anyone has heard of ties between some strong anti-biotics and Peyronie's?  Just prior to noticing Peyronie's, I was on a 10 day course of an anti-biotic.  One of the side-effects mentioned in the literature was Dupuytren's related issues in the hand. I did experience some tendonitis type symptons of pain in the palm as well as in the heel (plantar fasciaitis sp? type pain) which slowly went away after discontinuing the medicine.  Less than a month later I noticed the initial symptoms of Peyronies.  Would appreciate any feedback if anyone has experienced something similar.

As with most of you, my insurance won't cover anything associated with Peyronies and my Urologist was pretty non-committal during any exams, so other than topical Verapamil and Vit E, I haven't tried anything else.

Is there additional risk is taking Viagra / Cialis or should I stay away from that?

Any feedback would be appreciated.

DAVE

[Ralf3]

Hello Dave,

I developed damaging fibrosis in my penis one month after a stupid anti-biotic treatment of infectious mononucleosis. IM is actually a virus-caused disease, non treatable by ATB. My crazy GP didnt want to make me blood tests and prescribed me three different and strong ATBs within 2 weeks!! I also had a strong inflammation in the body, CRP level and Leukocytes were far over the treshold. Glucose level was also increased. My immune system was broken. So, I was the best candidate to develop any damaging disease   And it actually happened. I was just 21 years old.  

[newguy]

It's such a complex area isn't it. There are people who think that use of viagra caused (or contributed) their peyronies, others blame antibiotics and so on. My own view is that trauma of some kind of likely involved in most cases, or that occasionally a pre-existing condition may result in peyronies. I tend to think that we attibute blame to whatever we can or whatever seems most obvious to us. It's hard to rule anything out totally of course because nobody has all of the answers.

What is also so troubling is that the time span of this disease seems so vague. Some people seem to experience improvement with the help of treatments, others struggle seemingly indefinitely with flare up after flare up. Some develop a curve overnight, with others it occurs months or even years after an injury. This level of diversity makes it hard for people to get their head around the condition and to decide upon an approach that can be useful for all.

At least there we now have some treatments that certainly go some way towards helping with peyronies in some cases, but we still have along way to go...

 

[George999]

I think it is important to remember that one of the core issues resulting in Peyronie's is that of TGF-Beta1 attacking healthy tissue.  TGF-beta1 is a cytokine intended to attack foreign invaders like infectious bacteria.  It is normal for it to be present in body tissues.  It should NEVER be attacking healthy body tissues, no matter how concentrated its presence.  Thus, in the case of Peyronie's we are dealing with a malfunctioning immune system.  In this case what typically happens is that some minor occurrence causes certain healthy tissue to become inflamed.  The malfunctioning immune system detects a problem and goes on the attack.  But since it cannot identify the inflamed tissue as being normal, it attacks it, increasing the inflammation and spreading it to adjoining tissue.  A cascade of events that is responsible for a number of other maladies in addition to Peyronie's.  In the setting of a malfunctioning immune system, a number of events can trigger Peyronie's.  In the setting of a NEARLY malfunctioning immune system, a number of events can ever so slightly tip the scales and, together with an appropriate trigger, induce the nasty cycle that we know as Peyronie's.  So I think it is important, not so much to figure out "what" caused it, as it is to identify what things might help it.  I am NOT saying that we should not be discussing causes.  ONLY that we need to be careful not to become fixated on causes or on assuming that we have suddenly found the one and only cause of all causes.  In a similar vein, I think it is important not to become so fixated on finding THE "cure" as it is to recognize that the road back to health is as complex as the road to the disease was in the first place.  Currently there is NO "proved" cure.  There are treatments with good evidence to back up their usefulness, but none are "proved" surefire remedies.  Those insisting on such a remedy may waste a lot of time and a lot of very promising opportunities for improvement of their conditions.  - George

[newguy]

George - I certainly agree with this. It's all too easy to concern ourselves with the question "why has this happened to me?" when what really matters most is how to get on top of the issue to the best of our ability. As you state, sadly nobody holds a miracle cure, but there are positive steps that we can take to at least attempt to address the problem. There are also potentially very effective treatments on the horizon.  

[newguy]

Dave46 -  have you thought about VED use? If you are experiencing hourglass deformities, it sounds to me like it could potentially be the best angle of attack for you right now. What do other people think?

[newguy]

I hope the thoughts below are helpful. I noticed that i've been quoting posts when that may not be required, so i've gone back and removed quotes and in future will attempt to choose appropriate subject headings to allow for easier searching of the posts .

[Tim468]

Hi Dave,

I agree with George that multiple pathways can lead to this condition, so the path that you took is certainly a possible real trip (though a doctor would probably equivocate on that).

But as George says, the issue is where do we go next. I think how we got here is very important in terms of answering that question, though, for it may lead us to different conclusions on how to get out of the mess. In your case, first, don't take those kind of antibiotics!

Second, in addition to topical verapamil (won't hurt, may help), be sure that your vitamin E is broad spectruma nd includes all four tocotrienols and tocopherols. Finally, investing some money in a VED and getting started on a regular program of gentle pumping can help a lot too. When I finally "got it" about the theory behind using a "small" cylinder, and did it, I saw immediate 10-15 degree changes in my curve and I have been able to maintain erectile health and shape using it.

Tim