Greetings from Wales

[welshwales]

Hi folks, I've been searching for a decent discussion forum on peyronies for a couple of years, and can't believe I've missed this one! So it's great to finally be able to discuss this issue with other people who are going through the same thing.

I was diagnosed last September with peyronies, although I had been pretty certain what the diagnosis would be for over a year before that. I developed balanitis at 30yrs and had a full circumcision to enable me to be fully sexually active as the tightening was very restrictive. The day after surgery I went into urine retention and had to go to the A&E dept for treatment. To cut a long story short I had a botched catheterisation resulting in penile injury. Shortly after I developed lumps around the injury site causing the hourglass effect. Initially this was no problem, it didn't affect function and I couldn't have cared less about appearance. But about six months ago I started to develop further lumps resulting in a right sided curvature of about 60°. Now this development has affected function, is painful and has reduced my confidence. I'm waiting to see my specialist in a couple of months about the next step in treatment, so far I've just been taking vitamin E daily but there has only been progression of the disease. Last time i saw my specialist he suggested surgery and I felt no need as there was only mild symptoms. But now that the disease has progressed I am considering surgery once the symptoms have stabilized. But I'm not so keen on the idea of the length reduction, obviously!   So I'm wondering at what point peyronies stops progressing in other guys cases?

[Norm]

MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums

Greetings, Wales,
We are glad you found this valuable resource. If you read the link above, you will find a wealth of info on how to proceed. To answer your question, doctors will not consider surgery until after you have been stabilized for at least six months. "Stabilized" is the key word. You may be changing for a year or more. I don't think you want to wait that long to start doing something about your situation. The above article will tell you what you can be doing. You might even correct your problem without surgery. Many here have done that. Most importantly, you don't have to take vitamin E and come back in six months! This forum will advise you, but no one here is selling anything. Good luck.
I forgot to mention, most of the length you will lose to surgery is already lost to the Peyronies Disease anyway.

[Jonbinspain]

WelshWales;

You need to find a Urologist who specialises in treating Peyronie's. there's a list of recommended ones on the site. Unfortunately, you may have to go private to get effective treatment.

Read as much as you can from this site. It will give you an overview of what is known to be relatively effective, and what is not. You need to stop the progression, and reduce inflammation, for starters. I would recommend that you consider starting with L- Arginine, ALC, CoQ10 or Ubiquinol. If you can get your doctor or new Urologist to prescribe Pentox, that would be helpful.

As Norm has said. You need to stabilise your condition before any other options can be considered.

[welshwales]

Thanks for the welcome and responses. I have read the various posts and links regarding pentox etc. It's interesting that not on any UK resource sites was pentox mentioned. My specialist told me that there are no successful peer reviewed trials as to the effectiveness of drug treatment for peyronies, only anecdotal evidence on vitamin E. If i don't have any luck persuading my urologist to prescribe pentox I might just try to go private as our family is covered for one-time consultation by a civil service benoden healthcare program.

[Jonbinspain]

WelshWales;
Perhaps you can print this off and show it to your "specialist"  Dr Levine is acknowledged as one of the world's leading experts in this disease, and it's treatment.

As you will see, there is no guaranteed cure for Peyronie's. however, as the study states there are oral treatments that have been shown to at least stabilise, and in some cases improve, this disease.


Peyronie's disease: contemporary review of non-surgical treatment - Levine - Translational Andrology and Urology

[welshwales]

Thanks for that Jon