New to Peyronie's this year... feeling scared

[kmdguy]

An Introduction

Hi there, my name is Dan, 45 years old, married 21 years. I have type II diabetes but it is well controlled with minimal oral medication. I have always been a runner in good shape, never been overweight, never smoked, drink some wine once or twice a month. My penis normally is 7 inches and thick girth (my wife used to tease me that she was a virgin every time, heh). I was certainly no John Holmes but I was very happy with what I had.

It is now early December 2011 and I first noticed something funny in January of 2011, almost a year ago. One evening lying in bed I noticed a small, hard nodule on the right side of my penis. I palpated it each night to see if it was growing but I never went to the doctor. After a few weeks, maybe 4, it eventually went away. But that's when I noticed a small dent starting to appear on the same right side. This was mid February and then the dent became very pronounced within 1-2 weeks quickly. For a period of about 2 weeks I had a fair bit of pain there, but it soon went away and has never come back. I was now concerned and made an appt. with my Kaiser Perm. GP in March. I described it to him, and although it is not observable when flaccid, he palpated it and admitted he didn't know a lot about it and referred me to a urologist the next month. In late April I met with him and the dent seemed to have stabilized by that time. It was a pronounced dent for sure, but it was not causing any angling or curves. My erections were nice and hard as always and it didn't seem to be interfering with things other than aesthetically.

Since I have done quite a bit of medical illustration in my career, I had taken pictures and illustrated the exact before/after shape of things for him to see since it is not observable when flaccid. He looked at that, palpated me and said that I probably had Peyronie's and there is nothing that can be done. He said 1) you have no pain, 2) it seemed to have stabilized, 3) your erections are good and so overall he said maybe try some Vit. E for no more than 6 months and keep an eye on it. He patted me on the back and said it could be worse, and that was that.

It is now December. I had been taking Vit E 2X daily, and the dent has maybe gotten slightly more pronounced, but another dent on the lower left side has now appeared and we are having the hourglass effect starting to take place. Still however, no significant bending is occurring, no pain, erections are still firm, albeit visibly contorted and things are still pointing straight for all intents and purposes. I have been feeling helpless, panicked and emotionally distraught. Can I say that I have been very happy and proud of my "junk" all of my life, and now I'm watching it evolve into something that looked like it suffered an industrial accident.

Two weeks ago I made another appointment with a different urologist with Kaiser to see about doing something, anything. Yesterday I met with a new one, showed him the current illustrations of the way things looked and had a good talk. He too said, there is nothing that can be done except surgery and that he said I absolutely do not qualify for that which I understand. I talked to him about Pentox and he said that there is no medication, either oral or injected that has shown any efficacy in reversing or helping Peyronies, period, none. He did say he would reluctantly prescribe me Pentox today simply because it is a very safe medication, but I'm sure he's doing it only to shut me up and send me on my way. His last words were "don't expect much". Both urologists were friendly, but extremely negative in their outlook about it.

I will be picking up my Pentox today. I would like to document, week by week, my experience with it, measurements, illustrations, etc. Based on the remarks by both of my doctors I might as well be taking VitaMeataVegaMin but if they think it will pacify my emotions they'll give it to me.

Of course, I feel repulsive looking now. I'm afraid that this is the end of everything sexually, etc. All of those emotions. Why ME?

The other difficult part of the equation is that my wife has been going through peri- and post-menopause, and so we haven't actually had sex for almost 2 years. We used to have such a vibrant sex life and I now feel like a 90 year old man. I also wonder if this may have been caused by lack of sex, sort of like the use-it-or-lose-it syndrome. If I had been having regular erections and penile workouts, would this have happened? Now the irony is if my wife is getting ready to start up again, I fear that I will be unable, due to my deformity.

I have uploaded an illustration of where I am today and will keep a journal of how things are going as I start Pentox. I appreciate your comments and advice.

-- Dan

I have posted an illustration, based on a recent photo, of the state of my current condition.
To view it go to:
dubya dubya dubya keyframe-multimedia.com slash pey slash 12-09-2011.jpg

[bert]

Dan, I/we know what you're going through. It sucks man, big time, but it sounds like you have a supportive wife and that is HUGE. A lot of guys have had very positive results from Pentox. Give it a try. Keep us posted of your progress - Bert

[Skjaldborg]

Dan,

I got this at 29, now 32. I am also healthy (no diabetes though), runner, athletic and never did anything that one would think would lead to such a condition. I experienced significant pain as well as the hourglass deformity. Pentox helped with get rid of the pain and over time (perhaps 6-12 months) the hourglass deformity has decreased somewhat. Not cured but doing ok and everything is working down there. Conceived my daughter while on pentox.

As you mentioned, the psychological "why me" aspect is the toughest part of the disease to deal with. If there is a silver lining to this disease it's that you learn that if you can handle this terrible disease, you can mentally handle anything. The best advice is to get on pentox, exercise as much as you can and go see a Peyronie's specialist like Dr. Lue in San Francisco or Dr. Levine in Chicago.

Don't blame yourself for the disease. Lack of sex would not necessarily lead to Peyronie's. In fact, Peyronie's is often caused by a minor injury during sex (as mine was). It's easy to bind together all the negative things happening in one's life, but that just makes a problem that's too big to handle. Any other sexual issues going on should be treated separately. Divide and conquer, so to speak.

Best of luck and feel free to ask questions. You will find a lot of good advice and support here. Feel free to PM me if you have specific questions.

Skjaldborg

[restore]

Dan, you are smart to get on Pentox, it has helped tremendously for me and many others.  I wouldn't say it's a cure, but it has softened my plaques, and eliminated my hourglass shape.  I still have a small dent on top midshaft and some upturn curve, but not as pronounced as it was 6 months ago.  My wife has commented that it has improved, and that is a big plus to hear.  

I too have had the "why me" feelings.  Even before peyronie's.  I had a botched circumcision at 11 years of age, and it held back alot of my erect size, and would cause my penis to bleed from a very tight erection.  I gained about an inch from foreskin restoration which took about 3 and half years, and it was wonderful.  Much more flaccid hang, and nice straight and longer erections.  Just when I was on top of the world, peyronies struck.  I was small already, so the foreskin restoration process only took me to about 4 and half inches.  Now, I've lost all I gained.  Ugh.

I think my regimine of pentox and low dose daily Cialis is reversing this disease, but it's slow.  Don't expect overnight changes, but it does get better.  Best to you, and yes please keep us updated on how you're doing.

[0x5555]

I would say it's not from lack of use.  As has been stated, most of us got this from trauma so lack of use may actually have been good for you.

You are in the age group that gets 'true' peyronies.  From what I understand this is much more of a 50+ disease in the sense of just waking up one day and noticing a bump.  This is unlike those of us who remember a specific trauma.  There seems to be a link between peyronies and dupuytren's which suggests this is a genetic issue.  

To put your mind at ease, it's good that you have no pain and no curvature.  Some people have a completely bent dick and sex is not possible.  Likewise some of us are in pretty bad pain and I can tell you that is infinitely worse than any deformity.  I was at the point where I couldn't go for an hour without waking up from sleep because of nighttime erections.

This absolutely sucks, there is a lot of 'why me' and emotional distress.  Just so you know there are many more people out there going through what you are dealing with.  I'm sorry this happened to you.