Mending the Bend

[Mending the Bend]

Hello Gentlemen,

I'm 48 and I developed Peyronies Disease about 15 months ago. I strongly suspect that this was from a sexual encounter with a woman who vigorously grabbed and stroked my penis while it was semi-erect. I felt some pain at the time, but I didn't think much of it. About a month later, I noticed a small lump in my penis on the left side, followed shortly thereafter by a 30 degree curvature to the left, with moderate pain along the left side during erections. The curve worsened slightly to about 35 degrees, then stabilized.

I went to a highly respected Peyronies Disease doctor here in NYC, and he suggested starting Verapamil injections. I said I wanted to wait for Xiaflex, which was due for FDA approval shortly. I wish I would have listened to myself.

The Verapamil injections were horrible. I had been stable for 9 months up until after my 4th Verapamil injection, when it got markedly worse. I went from a left-only curvature of 35 degrees to bi-planar curvature with 39 degrees to the left and 40 degrees upward, with hourglass indentation - and what's worse, erection stability issues. I am convinced that the injections made my condition worse, especially the Verapamil technique which calls for several dozen injections into the penis. If you pierce the tunica that many times, one would suspect that there will be resultant scarring - especially in people prone to Peyronies Disease.

I held out hope, however, and I started Xiaflex injections a few weeks ago. I'll post further in the Xiaflex forum, but briefly:

After my first Xiaflex injection, I experienced no swelling or bruising and only very mild tenderness at the site of the injection. When I took off the bandage three days later, I could already feel a softening of the plaque. When I felt comfortable (and brave) enough to see if there was an improvement during an erection, I was pleasantly very surprised. After only one injection of Xiaflex, my leftward curvature improved to about 27 degrees from 39 degrees (a 12 degree or 30% improvement). The indentation on the left has also gotten a little better.

I am very hopeful for further improvement in my bi-planar curvature and stability issues. I think that Xiaflex is indeed a legitimate "cure" for Peyronies Disease, in many cases and if done properly. Good luck to all of us.

Mending the Bend

[emasculated]

Thanks for telling about your experiences. We are reading more and more positive things about Xiaflex here. As the techniques gets perfected this will probably become a major option.
[Sadly, in my country it is not distributed and not available for very very shady reasons.]

[skunkworks]

Have you thought about any of the other peyronie's treatments?

Peyronies Survival Guide - Information for New Members - Peyronies Society Forums

[NeoV]

Great to hear about Xiaflex.

[Mending the Bend]

Have you thought about any of the other peyronie's treatments?

Peyronies Survival Guide - Information for New Members - Peyronies Society Forums

Like most of us, I researched extensively before seeing my doctor. Since Verapamil was the medical standard of care at the time, I agreed to it. And although I got worse over the course of the injections, the science of calcium channel blocking within the plaque scar made sense to me. The administration protocol which calls for dozens of injections may cause more harm than good, however. It's in the past for me, but I would strongly caution others to consider Verapamil injections carefully before proceeding.

I started taking Arginine/Citrulline pills several months ago, in part because I thought it *couldn't hurt*. But there's no evidence to suggest that it does anything to degrade Tunica plaques or improve curve angles.

The other oral and topical treatments and vitamins seemed to offer not much more than empty hope in a bottle, so no I didn't place much faith in them. I am not talking about treatments for ED here; if Peyronies Disease is causing erectile problems, then yes of course Cialis or Viagra should be used.

I focused on collagenase because the science is sound, makes sense, and is very promising. Xiaflex contains a highly specific enzyme which cleaves and degrades the collagen which is causing our hard plaques, resulting in curvature. What we have here, gentlemen, is a chemical knife that cuts (eats) away the scar from the inside.

I feel profoundly fortunate to have been diagnosed with Peyronies Disease so soon before Xiaflex came to market. For me and countless others, we finally have something to treat our disease which is akin to what Penicillin did for the treatment of bacterial infections - revolutionize it. The history of antibiotics shows us that while no treatment is a panacea, and that abuse or improper usage can cause problems, properly administered it can be a true cure for many.

The only other treatment option which made sense to me was modeling and traction. Anyone who sees gauged ears or the incredibly long necks of the Burmese tribal Karen women knows that the body can be modified in this way. So yes, I am using traction and trying to stretch the scar. Doing so while the plaque is being degraded by collagenase I think will be doubly productive.

Best,

Mending the Bend

[skunkworks]

Did you read the link though? Evidence based treatments (other than traction) are pentox, coq10 and acetyl carnitine. Actually tested in studies on Peyronie's sufferers.

I very much hope that xiaflex works for you. The above are worth considering if you still have issues after treatment.

[Mending the Bend]

Skunkworks -

Thanks for the advice. I read the PubMed articles and have decided to start ubiquinol and acetyl l-carnitine supplements (not Tamoxifen, because it was shown to be less effective and have more side effects than ALC: Acetyl-L-carnitine vs tamoxifen in the oral therapy ... [BJU Int. 2001] - PubMed - NCBI).

Hopefully the combined effects of collagenase, modeling, co-q10 and ALC will do the trick. I will report back on my results.