Lurking for over year, hello

[mroctopus]

I've been lurking here, reading advice, trying a few things. But often despair kicked in and I didn't follow through. I'm writing finally because the pain is getting too old and it's obviously something one can't just chat about with friends. "Let me tell you about my junk, it's junk."

About five years ago I was diagnosed with prostate cancer. I was 43. I went back and forth on option, but the docs at sloan kettering convinced me surgery was best, since I had the best chance of recovery. And early on things looked good, but over a year later, in some symptoms of Peyronies started developing. Now no one there told me that surgery meant a 16% chance of developing this. I found that on my own.

Since then I've had the Verapamil injections at MSK. Painful and no hope. I was told rather bluntly at the end of the treatment "the deformity is permanent" -- since then I've been in a state of depression. I get out of it know and then, but there are the reminders, pain, an erection at night. My girlfriend left me. I'm 48. I feel in someways like there's a huge part of the world I don't belong to anymore.

I am writing because maybe I can emotionally bounce back. Maybe at this late stage (having lost three inches, with severe hourglassing and about an 80% bend) there's something I can do beyond being just hoping to be philosophical and stoic (which I kind of suck at).

I balance the sense of hopelessness with the sense of rage at, I think, being deceived into a premature surgery without being honestly appraised of the odds of these consequences.

And I am growing tired of bearing this alone.  

[Stabler]

Mroctopus,,

You are not alone!!

Thank you for posting and sharing your story with us. I can assume that the peyronies set in due to scar tissue building up from the prostate surgery? Now I have read and many of the men here will tell you that the Verapamil injections were not a successful treatment for them. I have to ask, have you been taking the Pentox, Cialis, CoQ10 cocktail that the members here take along with other vitamins and supplements? Also do you see a urologist that specializes in Peyronies? that is most important. You mentions a 3 in loss and an 80% bend, do you use traction or VED to help with this? these are very useful tools in helping to correct the bend and regain length and girth in the penis, when used with the Pentox cocktail.

I see that you live in the states, so if you have not yet found a urologist that specializes in peyronies please use our list to find one in your area. https://www.peyroniesforum.net/index.php/topic,4063.0.html

I would suggest visiting the Survival Guide before going to your appointment to prepare for the visit, it has a lot of valuable information listed there. Peyronies Survival Guide - Information for New Members - Peyronies Society Forums

Many of the men in the forum feel like you do at times so please don't feel like you are alone, since you have been reading in the forum for more than a year you know that these men are here to help, that they speak from experience and that they know what they are talking about, you wont be misled here and no one here will paint you a pretty picture where there isn't one, we will tell it to you like it is so that you can have the best information.

Please start posting throughout the forum and ask questions, I would suggest reading on the Oral medications board especially if you are not taking anything at this time and again please make sure you are seeing a good urologist.

You are in a good place here, we are very happy to have you.

Hugs Mamma

[Jonbinspain]

Firstly, see a competent Urologist. One who knows and understands Peyronie's. There is a list of well regarded ones here.

80%, if you're talking degree of curvature, is a lot. I think it best you be guided by a top Urologist. If all else fails, or is ruled out by your Uro, implant surgery can be used to "straighten you out"

But, most importantly, see a Uro who specialises in treating this disease. There's a wealth of knowledge and experience about Peyronie's on this site, and you can learn much from it. However, very, very few of us are doctors or Urologists. You need a prognosis and sound advice on the best way forward for your case.  

[Pfract]

Hello! judging by that topic, it's a difficult situation for sure.. One can only imagine. Since so much time has passed, what you can try to do is probably use the VED and traction along with some meds to try to improve the situation. But with such a severe curvature, and size loss.... maybe an implant would be best suited to the situation after you have tried the "first options"?

Also bear in mind, that not all doctors care or specialize in "maxing out your size gains and options" when and if you choose to go for an implant. So, shop around for doctors with good reputation, and that give you a good idea of the size you will have after implant...

[mroctopus]

Thank you. I will look for a doctor. I had Mulhall though, and would not recommend him to anyone. Horrible experience, and a painful kissoff where he said "the deformity is permanent." That's when the despair set it. No recommendation for VED or Pentox, just the Verapamil injections, a worsening of conditions, and a shrug of the shoulders. I'll check some of the others.

[LWillisjr]

We've seen similar feedback on Mulhall.

[Pfract]

Amazing JP Mulhall has negative reviews. I read several academic papers from him, and since he is so talked online i assumed he was "good". What a shame..

[james1947]

The doctors list on our forum is 4+ years old.
Dr Mulhall negative reports are there for over 4 years.
If members will read the list before making an appointment, they will avoid him and other like him.

James