Diagnosed, confirmed yesterday

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

Willfly

Hello, my name is Robert, I'm 38, Southern California.  I had no idea what this disease was until I decided to type "scar tissue, nodule, penis" into a search engine, and then was presented with some pretty graphic disheartening pictures.  That was one search I wish I never looked up.  Immediately I went on Wikipedia, (as one does) to read more on this condition.  I didn't think I quite fit the bill, too young, penis still salutes at a straight 45 degree angle, no bends, can't be me.  Well I finally got my ass in the Urologist, and had it confirmed.  I was tired of always wondering, guessing, self diagnosing. Looking back I guess I would have to say that I've had this for well over one year, the doc suspected as much too.  I always described what I felt in my flaccid penis as a "dick tic-tac" my scarring is a small area, located behind the glans, just off center to the left.  I thought that perhaps it was age, as my glans did not swell quite like it used to, as I've seen commented in here.  As well, I haven't shot for distance like I did in the past.  Again, i know age contributes to that, but well, it seems this nodule sort of impedes to a degree during ejactulation, but not while urinating.  I suppose, I am lucky, if one can feel as such, in that my pain isn't even really pain, more of a minor discomfort if I go fishing for the spot.  I guess it's more knowing what my boy downstairs was capable of, and what he does now.  When I am erect, my condition leaves more of a flat area behind my not fully engorged glans.  This is because that scared area is cinching down from the inside, pulling the top down slightly as well as the bottom up, so it creates a small hour glass effect.  I have of course spent a large part of my day today at work looking at ways to remedy the condition, I know there's no cure, but are there any success stories of individuals eleviating, or improving the situation?  I found a lot of new words and medications on my internet quest. Acetyl L-Carnitine, Potassium Aminobenzoate, natural remedies like Hawthorn, Horsetail, etc..You get the idea.  My self esteem has kind of tanked after hearing all of this, we all love our dicks, and want them to be well, so to be told you have such a condition is saddening/disheartening. As a gay man, well let's face it, it's hard not to compare.  I hope my admission hasn't met with too much disapproval, but hell, might as well get the other 10% in.  :-)  I'm really glad to see there's a support system out there.  Any thoughts and suggestions are welcomed.

Skjaldborg

Hi Willfly74,

I got this at 29, (now almost 33) so I know how hard this is to deal with as a younger guy. I suggest getting a prescription for Pentoxylline as soon as you can. I took it for 8 months several years ago and it helped shrink some plaques, get rid of pain and restore some size. I'm not cured and I still have some minor deformity, but Peyronie's disease is now on the back burner. Also, since you are in California, get a referral from your GP or urologist to see specialist urologist Dr. Tom F. Lue at UCSF. He is one of the premier urologists on Peyronie's and my appointment with him and his staff was a turning point for me.

As for combating the psychological side: stay in shape, eat better, exercise and maintain a healthy sex life as best you can. I'm a married straight guy so I know certain dynamics are different but you don't need to tell your partners that you "have a disease." It's not communicable so you have no duty to tell them. Just say you took an elbow to the groin at the gym while playing basketball and now have some scar tissue or whatever and leave it at that. Don't do any sexual activities that are painful or likely to cause a bending injury. Use lots of lubrication. This is one of those situations where the burden of the disease never gets lighter, you just get stronger at carrying it.

Best of luck,
Skjaldborg

Willfly

I guess at this point I have more questions than answers.  It was really a shock, and coming from a urologist who sees dozens of dicks in a day, it's probably all just normal to him.  Developing vs. Stable stage.  I honestly can't recall when I first noticed that I had this issue, but it seems like it's been a long time.  When your life is based on dead lines and meetings, a year goes pretty quick which is why I think it's been that long.  How does one know if it's still developing?  Truth be told I wasn't too happy with my urologist in the end.  I pulled him off my insurance website, he wasn't a referral.  When I called today, hoping to get a few answers, his secretary took my call, my questions, and he had her call back with his answers.  I'll have to set up an appointment with my GP, clue her in as to what's been going on.  The urologist echoed pretty  much what most have said here, don't know the cause, no cure, and he had nothing as far as what I could do, with treatments, mentioned no drugs, said vitamin e wasn't "safe".  I think my biggest issue is sitting here knowing I have this, and not doing anything proactive, other than, have another visit in 6 months.  I'll certainly have to look into seeing Dr Lue up in San Fran, I'm down by LA, but this is certainly worth the trip

LWillisjr

Willfly,
You'll find in many of the topic threads here that many of us got the initial diagnosis and the "There isn't much you can do speech". I wen through a couple of urologists until I found one who would work with me and aggressively treats Peyronies Disease. I've state many times there that many urologists can diagnose this, but have little experience in treating this.

Les
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History