Johnny Leon (not his real name), 37, sought help when he noticed his penis was curving slightly and sex had become painful. His doctor diagnosed him with Peyronie’s disease—a rarity for such a young man—and set him on a course of treatments that has included electrical stimulation and medicines to dissolve scar tissue

By As told to: Nick Burns
August 27, 2008

man-pain-expressionPeyronie's disease causes severe discomfort during sex.(GETTY IMAGES)When I first developed signs of Peyronies disease, I didnt know what it was. It started with a strange indentation on the side of my penis that you could see only when it was erect. After 34 years, you kind of know what your body parts look like. I ignored it, but I knew I wasnt crazy or imagining things.

About six months later, I finally went to see a doctor because the shaft began to curve to the left where it used to be straight. The doctor could feel the scar tissue and so could I. It felt harder in certain places. Basically, the scar tissue builds up somehow and wont stretch with the rest of your penis. The doctor said the curving can stop or reverse itself in some cases, but in others, it worsens.

I went back again four months later because my situation took a turn for the worse, so to speak. My penis started bending downward and sex was becoming more uncomfortable. There was a pulling sensation, and the curve made sex a little more difficult. They say theres a point where sex becomes less painful, but I havent reached that point yet. Try bending your penis when its hard, or take your thumb and forefinger and stretch the skin until it hurts. Thats what it feels like when I get an erection or wake up in the middle of the night to urinate.

So, it was official. My doctor diagnosed me with Peyronies disease.

Next Page: Whats Peyronies disease? [ pagebreak ]Whats Peyronies disease?
The doctor gave me the lowdown and said that Peyronies affects only about 3% of guys in their 40s and 50s, and its rare at my age. It might affect a larger population of guys, but not everyone comes forward for help. Its unclear whether its genetic, and theres no known cause unless you have some sort of injury—which I didnt have. Its frustrating to read how rare it is, and I cant help but think Im being punished or something.

The doctor started me on treatment with a third of a pill of Cialis at night and colchicine pills twice a day, which the doctor said was for gout; he told me that certain studies suggest it may help break up scar tissue. So basically, the idea was to break up the scar tissue and stretch the penis back to a straight shape. I did that for two or three months without any results.

open quoteI dont know if it has gotten worse lately. I hardly look at my own penis now.close quote—Johnny Leon, Peyronie's PatientA year ago, I started using verapamil and an anti-inflammatory with iontophoresis. Verapamil is supposed to help dissolve the scar tissue. Iontophoresis is a treatment in which you apply a medication to the skin where you think the scar tissue is and place electrically charged pads over it. The electric charge is supposed to force the medication through your skin. It burns at first and feels like getting a mild tattoo on your penis.

For six months, I did it for an hour about six days a week. Finally, I gave up. The treatment seriously interfered with my life! The machine and medication were also expensive, and my insurance didnt cover it. I spent $10,000 of my own money for something that didnt work.

Next Page: My doctors doing everything he can [ pagebreak ]More about Peyronies disease

My doctors doing everything he can
I took a break from treatment for six months and went back to the doctor again this year. He put me back on colchicine and Viagra, but they arent helping either. I dont blame my doctor. Hes doing everything he can. Surgery is an option, but it shortens your penis, and I dont know any guy in the world who would want that. How could this be so impossible to fix?

I dont know if it has gotten worse lately. I hardly look at my own penis now. My boyfriend always tries to downplay it. He insists that its not bad and that he wouldnt notice if we just met, but I think he said that just to be nice.

As far as hurting one's pride and masculinity, this is the worst thing a guy can experience without having something removed down there. I mean, its disfiguring and its psychologically and emotionally damaging.

Apparently, there is an injectable drug containing enzymes that do something to the scar tissue; it's being tested for FDA approval. My doctors not crazy about injecting the penis, but at this point, Im willing to try almost anything.

I think if more guys come forward to see a doctor for treatment instead of suffering quietly with Peyronies, there would be more interest in researching remedies. Im counting on the new enzyme treatments that might be approved. Im 37 now. Im not a 60-year-old man, and I like to have sex frequently. I just want to get back to a normal sex life.