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Author Topic: New to the Forum. Looking for support group in Los Angeles.  (Read 1317 times)

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kennyh

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New to the Forum. Looking for support group in Los Angeles.
« on: January 19, 2017, 09:22:12 PM »

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.
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Jaystuart

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Re: New to the Forum. Looking for support group in Los Angeles.
« Reply #1 on: January 19, 2017, 10:28:01 PM »

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.
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Paolo

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Re: New to the Forum. Looking for support group in Los Angeles.
« Reply #2 on: January 20, 2017, 07:55:31 AM »

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  :)
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You throw sand against the wind,
And the wind blows it back again.

steto

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Re: New to the Forum. Looking for support group in Los Angeles.
« Reply #3 on: October 16, 2017, 11:05:20 AM »

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

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Re: New to the Forum. Looking for support group in Los Angeles.
« Reply #4 on: December 09, 2017, 12:41:50 AM »

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
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