John's story

John discovered that he had Peyronie’s disease in his late fifties. For him it seemed that the curvature appeared out of the blue. Here is John’s story.

When did you start to notice symptoms of Peyronie’s disease?

- The first time I noticed Peyronies in myself was in my late fifties. It seemed to me at the time that it happened overnight, that one minute I had a normal erect penis and then almost out the blue – suddenly – I had what turned out to be a 65-degree bend.

How did it affect you?

- The penis was pointing almost straight at my navel, and was bent more or less halfway along this length. That's not how my penis was supposed to look. Psychologically it's very dismaying to suddenly experience this thing. A man's erect penis is a pretty fundamental part of his self-concept, I discovered. And when it wasn't the way it ought to be, in the actual fact to have an erection was uncomfortable bordering on painful. Also, just the appearance of it. I didn't like the way it looked. I didn't like the way I felt. It was undermining in quite a profound way. Particularly because I was in a relatively new relationship and sex was a pretty important part of that.

How would you describe Peyronie’s disease?

Horrible, painful, uncomfortable, not looking forward to sex, not looking forward to sexual stimulation. That's a really weird thing, that's a really weird position to be in. It's totally counter to the way a human being is supposed to function. I didn't want to be sexually aroused, what about that? It's not fun.

What advice can you give to somebody who suspects Peyronie’s disease?

- The most important advice I can give somebody who discovers they have Peyronies is to find somebody to talk to who knows about it. There are an awful lot of people who don't. I encountered several of them before I found somebody that did understand it, that did know what treatments were available. I was told by my GP that there was no cure, no solution apart from surgery and to go home and get on with my life. I didn't. I consulted Dr. Google, did a little bit more research and then eventually found someone who did understand and did know what the options were.