Talking about Peyronies with Others

[Soma]

Peyronies is just not easy to bring up in day to day conversation. When friends, co-workers, etc. ask why I am in pain or visiting a doctor, I am at a loss as to what to say. The people close to me whom I have told have never heard of Peyronies. They simply didn't know it existed. As a man in my early 20's, it isn't as if I can find many people to talk to in person who have any idea Peyronies disease exists- and trying to explain the pain, the suffering and the treatment is exasperating. I also don't live alone, and since I am using a traction device for 4+ hours a day, it sure isn't easy to be subtle about the device under my trousers. I have found it hard to open up- since this is so misunderstood. Saying "Peyronies" is throwing out a medical term that most people cannot relate to. But personally, I have found that the more people I open up to and speak honestly about Peyronies to, the easier it is to cope and keep on with my daily life. I started this topic in the hope to discuss difficulties, as well as tips and solutions to opening up about Peyronies disease. No health problem is easy to cope with when you try to do it alone. How do you talk to the people in your life about Peyronies? Who are they?

[Norm]

Thankfully, I got past the pain part quickly, just a matter of weeks. For that reason, there is not much reason to bring up the fact that I have a curved doo-dah. I have only spoken with my wife and with my best friend. Obviously, I HAD to discuss it with my wife. She has taken it well and tries to downplay its effect on our sex life. I know she would prefer it straighter, but she would never say that. Early on, she was very gracious about massaging me. That finally wore off. Damn! That was nice!. I have told my best friend because I needed to talk to a man. He is cool about it. We laugh and joke about it, but he knows my insecure feelings. He never offered to help with the massaging, though. Some friend, huh? I have not had reason to tell anyone else. But, I am much older than you, Soma. I am 63. I can see that at your age there would be the possibility of more discussions about it. Your generation is not as prudish about those things as mine. And with pain, somebody is gonna notice and ask. I don't know your status, but if you are single, there are many more reasons to have to explain it. I know, had I surprised my wife and not told her beforehand, I would have made a grave mistake. Thank you for starting this discussion. I think it will be enlightening.  

[Soma]

Thanks for the reply, Norm. Perhaps there is a lot of difference in discussion about sex between the generations and therefore difference in how to bring up Peyronies. Personally, I am in a relationship with a girlfriend who is also taking it well so far. She obviously cannot relate to the severity of the pain I am going through (well, she can relate to a large degree of pain every month but that's off-topic), but she assures me that the kind of man I seek to become in the future isn't contingent on the shape of my penis- and she will stand by me regardless of that fact that I have Peyronies. Where I've had some problems is reaching out to my male friends for support. There is so much societal pressure to equate the penis directly with manhood that I'm actually a lot more fearful and hesitant to tell them what's going on. Male friends and co-workers know I'm in a lot of pain and am taking a lot of Naproxen everyday, but I just don't how to start the talk about Peyronies disease, what it is and what it effect it has had on me. I too hope this discussion will be enlightening for more men with Peyronies. With this disease swept under the rug for so many years since its discovery, I think it's about time that we learn comfortable ways to talk about it with others who don't correctly understand it- to help us cope day to day and also increase awareness and understanding of the problem among those who haven't heard of Peyronies.

[Skjaldborg]

I have only told a couple of doctors, the wife, my parents and a couple of therapists. I just don't think it's anyone's business unless they know me very well or need to know my medical history. It is unfortunate that we can't talk about it like we can a torn ACL or a bad back.

When I was going to a bunch of doctors, I just told people I had an injury and left it at that.

Skjald