Introducing myself

[Neverheardofthisb4]

I just noticed measurable bending to the left with upward torque around 6 months ago. I had no idea what was going on, but was able to self-diagnose pretty quickly after doing my own on-line research. I had never heard of peyronies and was startled by the medieval level of knowledge and treatment options that are out there. Its hard to believe that in the 21st century that there is such a complete lack of basic information as to the etiology of this affliction which has been around apparently from the beginning of reported history. And the treatments available seem to be on par with blood-letting and snake oil.

My self-diagnosis was confirmed by a urologist specializing in peyronies who indicates that a substantial part of my peyronies is located within the corpora cavernosa. Ultrasound imaging showed one chamber alight with "scarring" and  physical exam reveals plaque at the pivot point where my penis takes what is now about a 45 degree bend.

After 3 months on pentox... the curvature is slightly worse than when i started the med, or alternatively viewed, not nearly as bad as it could have been without the pentox.

I read the "peyronies self-cure" book with its religiously tilted approach which focuses on raising body ph followed by months of castor oil/dmso hot wraps aka Thacker's. I engaged the suggested ph raising regimen while popping the pentox. Neither of these treatments has thus far improved the peyronies, but the alkaline diet did wonders for me in shedding about 25 lbs of stomach and love handle fat. I am now the lightest I have been in over 30 years (currently 60) and probably the healthiest other than my peyronies and its severe curtailment of my sexual life. Feeling better through my weight loss has probably been useful in offsetting some of the psychological angst related to the peyronies.

My urologist recommends xiaflex treatments which as best I can fathom may provide max 1/3 reduction in curvature, which is marginally better than the results obtained in the control group who were injected with saline solution.

I am weighing whether to proceed immediately with the xiaflex or to wait and see whether i am part of the 1-25% that has spontaneous remission. I'm not particularly enamored with the idea of being injected with gangrene bacteria (even if it is dead)for modest improvement, but would value the experience of others that have gone down that road. Do any of you think the Thacker's should be tried first?

Nice to meet all of you co-inflicteds.

Neverheardofthisb4

[james1947]

Neverheardofthisb4

Regarding "peyronies self-cure" book and Thacker's formula? Snake oil will do the same effect.
Make a forum search regarding Thacker's formula (30 posts), you will find out what other forum members experienced.
Regarding Xiaflex, the forum members results are much better than the maximum 1/3 reduction in curvature. Have a lot of information on the forum, you may want to read the posts of the members were/are treated with Xiaflex.
By the way, I wish I was smart like Thacker. I was also a multi millionaire by now.

James

[nemo]

Yes, as a veteran of "Thacker's Formula," I can tell you don't waste your time. There were several of us trying the treatment for a long time (a year or more) and while some of us, myself included, seemed to enjoy minimal effects like better erection strength, I don't believe one single person saw a reduction in curvature/deformity. Eventually, every single one of us gave up on it and it's looked at as a well intentioned experiment that just didn't pan out.

Focus on stuff, like Xiaflex, which is actually producing some results. They may not be resounding, but even a small percentage of successful cases is vastly better than what we saw from Thacker's.

Best to you,
Nemo