Peyronies_Info_Group

This group is designed for men to ask questions, share experiences, or just read and understand more about an issue that effects so many men. Peyronie's disease is penis problem caused by scar tissue, called plaque, that forms inside the penis. It can result in a bent, rather than straight, erect penis. Most men with Peyronie's disease can still have sex. But for some, it can be painful...

Although there is much research and data to be found online, including YouTube videos that show the surgical procedure to correct Peyronies disease, a place to discuss personal stories seemed like a good idea as well. I was encouraged to start a group on the site after sharing my story with a friend. Although reluctant at first since its not purely a nudist condition, we are in a nudist community and it felt right to perhaps help someone else realize there is hope and there is treatment for something that effects men in a most personal way, so here goes:
I was actually using the bathroom one night before bed and felt a tingling sensation in the head of my penis that felt like something stuck inside the urethra, and as I began to shake when I finished, I felt a lump in the shaft that I had not noticed before. I was concerned right away but wasn't sure what it might be. The next day I looked online and Peyronie's disease was one of the things that showed up in a search. I didn't think that could be happening to me since I had not injured myself in any way that I knew of but I kept feeling over the next few weeks and noticed an increase in the size of the lump. I had an appointment scheduled for my annual physical so I mentioned it to my PCM and he referred me to a urologist. The urologist confirmed that indeed, I did have Peyronie's disease and plaque was developing inside the shaft. He explained that it would continue to grow for up to a year and there was really no treatment they could do as long as the plaque was continuing to develop. Once it went dormant, there were options he explained.
So I waited and had regularly scheduled appointments with the doctor every 2-3 months where I had to take pics of my erection so he could see how much of a curve was developing through the progression. Although I always had a slight curve to the left, it was obvious to me the curve was getting more drastic over several months, confirmed by the doctor and so we continued to wait. Finally, the doctor was fairly certain enough time had gone by and we started to discuss options. The first would be injections, where a series of shots (over the course of a year) are given directly into the plaque to dissolve it. This also required shaping exercises to be done every day, as well as regular visits with the doctor to monitor progress. There have been some known side effects to the vaccines which caused my doctor to steer me away from that option since sometimes, the damage is greater than the reward. Option two was surgery, known as penile plication (watch YouTube videos for the visual). Essentially, it involves a minor incision so the skin can be pulled away, and permanent sutures are places on the outside of the curve, whichever direction the curve happens to be going. In my case, I had a hard curve left, so the stitches are on the right side. Basically, a series of stitches are put in, then they are chained together to pull the penis back to a straight position when erect. One down-side is the penis will be somewhat shorter than it was (the doctor can only make it as long as the inside of the curve). In my case, I lost a little less than 1.5". To the average observer seeing me naked in a social environment, this would not be noticeable since I still hang roughly the same flaccid as before. Erections tell the tale though, and to that end, I notice the loss clearly. however, the trade off is worth it in my case.
Sever cases of Peyronie's can lead to ED as well as the inability to have intercourse, since your penis is so bent it simply will not go in, OK, lets just be candid for a minute. Surgery was my only option. There was less bruising or soreness than I anticipated, and after a day of rest I was fine for normal activities but I took it easy for a few days. You are required to abstain from any type of sex (including masturbation) for 6 weeks after surgery, or until released by your doctor at the follow-up visit. Mine was just over 5 weeks and he said feel free to presume regular activity.
Many men have milder cases that don't require any treatment, however, treatment is available, and none of us are suffering through this alone. It is far more common than most men realize. If you're suffering, please talk with your doctor or urologist and see what might be the best option for you.
In keeping with the rules I set up for this group, we will not be posting pics of erections (plenty of those online elsewhere for medical purposes), however, please reach out to others and discuss your situation so that no one loses hope over something that is treatable.

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RE:My Story

Very interesting. Thanks for sharing that information, and good to know that your treatment turned out well.

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RE:My Story

An excellent account of your fortuitous case of Peyronies Disease. Your detailed explanation of your condition from initial discovery to the options available and the decision to move forward with the surgical procedure is easy to comprehend why it proved to be the best course of action. Best of all is a very positive outcome for you and those you love.

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RE:My Story

Thank you! I appreciate the kind words, and hope my story helps others.

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RE:My Story

Thank you very much for sharing your personal story in such a detailed and well written post. I'm sure it will help some who may have this as well.

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RE: My Story

Thank you for sharing your very personal and informative story.

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RE: My Story

Off my radar screen until now and I am grateful to be informed. Men need to be as open about penis health as women are about breast cancer, etc. awareness.
You are a generous man to start this group as well. Good luck.

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RE:My Story

My understanding is this is a somewhat common condition. But I've never heard it discussed among anybody I know. Respect and appreciate you've opened it here.

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RE:My Story

Interesting. Glad you did not have bad results. About 30 years ago I was diagnosed with Peronne's disease. My urologist prescribed a very very bitter powder to be mixed with water and taken daily. I almost lost it the first couple of times I drank it. I do not remember him giving me any options. I do not know if the medicine helped. I can still feel a small rod running the length of my penis I always had a slight curvature; it is not any worse. I also lost a small amount of length.

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RE:My Story

I had injections of a drug called verspimil into the plaque and used a vacuum device daily. My pain went away within about two weeks and my curvature was non surgically corrected. Mine case was caused by a transurethral prostate operation. I had TURP operations 3 times in 4 months. The quack urologist never warned of Peyronie sand didnt diagnose it after it happened. I went to a specialty place in a big city. The quack who maimed me is still butchering others. This was in 2006 in Alabama. quack Dr Name on request

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RE:My Story

Really glad the injections worked for you. And there are too many doctors who should not be practicing medicine. Fortunately I had a good one.

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