I first noticed my Peyronies Symptoms around August 2010. I had always had a congenital (slight downward curvature) so at first I ignored it. My wife noticed that it was turning clockwise- or counterclockwise from her perspective. It then started to bend upward, which because of my congenital downward bend seemed to be some sort of healing. I didn't go to the Urologist however until I developed pain under the glans area of my Penis. The Uro diagnosed Peyronies and prescribed Verapmil Cream. I was on this for months while the curvature went from downward to upward. At first I too this as "healing" but I now know I was just in the active phase and the Verapamil wasn't doing anything.
I have stabilized since then with 45 degree upward curve and a 90 degree clockwise twist which has the same effect as a 90 degree curve to the left. There are two areas of scar tissue, one at the base of the shaft which almost goes around the entire circumference of my penis and the one that causes the upward (now leftward) curve I cannot easily detect.
I have tried many enzymes which were supposed to disintegrate or soften scar tissue in addition to the Verapamil ointment, but nothing makes any difference.
I have talked to a surgeon about corrective surgery but he only had experience with Plication and did not seem confident with removing the scar tissue.
I would like to find a surgeon who specialized in this and has done hundreds of surgeries, not just 2 that the surgeon I spoke with had done.
Like the rest of us, I hold out hope for this Xiaflex as well, though it doesn't sound like it's a miracle cure by any means.
We are starting to compile a list. This is under construction.
https://www.peyroniesforum.net/index.php/topic,3053.0.html (https://www.peyroniesforum.net/index.php/topic,3053.0.html)
Jd,
You don't say what part of the country you are in.
Check Mulhill at Sloane Kettering in NYC. He does re-construction after cancer in penile patients.
We definitely need to know where you are and more about your condition so we have some clue what type of surgery you may need (implant, graft, etc.)
When it comes to surgery you want the very best. There are thousands that will gladly cut your penis and work on it but only a relatively small number that I would trust to do such a surgery on me.