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
When I first developed signs of Peyronie’s disease, I didn’t 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 wasn’t 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 won’t 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 there’s a point where sex becomes less painful, but I haven’t reached that point yet. Try bending your penis when it’s hard, or take your thumb and forefinger and stretch the skin until it hurts. That’s 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 Peyronie’s disease.
Next Page: What’s Peyronie’s disease?
What’s Peyronie’s disease?
The doctor gave me the lowdown and said that Peyronie’s affects only about 3% of guys in their 40s and 50s, and it’s rare at my age. It might affect a larger population of guys, but not everyone comes forward for help. It’s unclear whether it’s genetic, and there’s no known cause unless you have some sort of injury—which I didn’t have. It’s frustrating to read how rare it is, and I can’t help but think I’m 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.
"I don’t know if it has gotten worse lately. I hardly look at my own penis now." —Johnny Leon, Peyronie's Patient
A 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 didn’t cover it. I spent $10,000 of my own money for something that didn’t work.
Next: My doctor’s doing everything he can
My doctor’s 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 aren’t helping either. I don’t blame my doctor. He’s doing everything he can. Surgery is an option, but it shortens your penis, and I don’t know any guy in the world who would want that. How could this be so impossible to fix?
I don’t 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 it’s not bad and that he wouldn’t 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, it’s disfiguring and it’s 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 doctor’s not crazy about injecting the penis, but at this point, I’m willing to try almost anything.
I think if more guys come forward to see a doctor for treatment instead of suffering quietly with Peyronie’s, there would be more interest in researching remedies. I’m counting on the new enzyme treatments that might be approved. I’m 37 now. I’m not a 60-year-old man, and I like to have sex frequently. I just want to get back to a normal sex life.
As told to: Nick Burns
Last Updated: August 21, 2008
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