Support groups work!

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mike1379

I'm a part of a small support group of others with petronies. We met through a CL post. We're diverse in age, inclination and severity of peyronies. We meet once a month or so, chat online - it's been a positive, helpful experience for all of us. Most people suffer in isolation I think. This forum is helpful too, but I've found our support group the best non medical therapy for me.

mike1379

We've become friends all coping in different ways with a common ailment. I think we all feel secure being open with each other and knowing we're always going to get encouragement. Takes the emotional sting out of this condition and relieves a lot of the insecurities. I'd recommend this approach to anyone.

TonySa

How's the Xiaflex + traction going?  I start both in a couple weeks.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

mike1379

I've had the first set of xiaflex injections, waiting another month for the second set. Don't expect any improvement from just the first set of injections. My urologist is very optimistic though. My curvature is less than others on this forum - mine is 35-40% to the left. The traction has helped me regain some length but progress is very slow. Also tried a vac pump with a cock ring but not something I can sustain for 2 hours at a time like the traction device. Like the sensation of the vac but don't think it's effective therapy. Others in my support group are also now using traction, and one guy uses a vac pump several times a day. His case is more severe than mine so he's more aggressive with vac than I was.

steto

Mike1379 -- would you be willing to share a link to the support group?

Thanks,



S.

mike1379

I'd share a link if we were that formal. We're just a small group of guys who met through a craigslist post. We get together once a month or so. Mostly we chat online or exchange emails & treatment result photos etc. we're diverse in age, severity of peyronies and sexual orientation. You might try to form a group of your own by using craigslist.

steto