New to the Forum. Looking for support group in Los Angeles.

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kennyh

To introduce myself...  Here's my situation.  My Peyronie's began 6 1/2 years ago while I was on antibiotics for "Lyme Disease" (really other infections from fleas) and had chronic systemic inflammation.  I also had just had an allergic reaction to MRI contrast dye (Gadolinium) a few weeks before.  (Gadolinium can cause a systemic fibrosis in some people.  Docs would probably deny it has anything to do with my sudden onset of fibrosis in my penis.)  One day I was normal, then one night I woke up with a very small, painful nocturnal erection.  It was like I very suddenly lost 20% or more of the elasticity in there.

Got the typical, "take vitamin E and wait and see" advice.  The pain stopped and I stabilized after 18 months.  I'm now just 4" long and about a 4" girth, and I have about a 45-degree curvature upward.  It actually comes out upward, then curves down and then back up.  It is very hard when erect and I imagine it is "brittle" and may be risky to have intercourse.  I have not tried having intercourse since this began.  I was divorced prior to this.  I assume any intercourse would have to be done slowly and carefully, if it is safe at all.  I read somewhere that 45-degrees is the cut-off for safe/unsafe.

The most recent urologist I saw suggested an injection to induce an erection so he could inspect it.  He had a horrible bedside manner and was rough with me during the initial exam, so I did not see him again or get the injection/inspection.

I still have chronic fatigue, fibromyalgia, leaky gut, etc. from all the antibiotics.

Mentally I have struggled with self-esteem about this.  I was smaller than average before and now am very small.  On the other hand, I think the shape could even feel good (hit the right spots) in a woman if it were safe for me.

I would like to find a good doctor and an in-person support group in my area, if possible.

Thanks...
Best to all.

Jaystuart

Welcome to the group. I'm still learning a lot at this point but I understand your pain with the shrinkage. Hang in there as there is reason for hope.

Paolo

Knhark59, you may want to look into 5-LOX Inhibitor, I am currently taking it and is an interesting supplement, also on digestive enzymes which I would recommend if you take antibiotics frequently  :)
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

steto

Hi kennyh -- did you find a support group in Los Angeles? If so, I'd be interested in joining. Thanks!  

orangecountyca

Also looking for in person one on one or group setting discuss peyroines   use of devices   meds surgery.  My HMO offers little except telling me the obvious    I have it---I am in OC area of south calif    email direct   ezgnm43@yahoo.com