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Author Topic: Still in Active Phase, 3 Years In and Other Details  (Read 482 times)

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RhinoRy

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Still in Active Phase, 3 Years In and Other Details
« on: January 03, 2019, 06:54:05 AM »

Aright gents some background, just before my 30th birthday I saw the first dent on the left side of my shaft. Freaked out. Saw Dr. Stahl in NYC. He confirmed peyronies via ultrasound. 26 degree upward curve. Married, no kids at the time of diagnosis. I chose to use VED since I was hourglassing by the time I saw Dr. Stahl. Also took CoQ10 and Acetyl L Carnitine. It seemed to work and hold me at that position and slightly improve me even by pulling out some of the hourglass.

Well, I figured I’d done the VED for 6 months and at this point, I was about a year into my diagnosis and figured I’d go stable soon so I’d won the battle.

Well, here we are, nearly three years to the day that I saw the first dent and I am still in an active phase. Has anyone else experienced such a long active phase? There is literally no question in my mind I am still active. More dents, and now a curve to the left as well as upward (although upward seems to have lessened since the left curve has come into play). Also the upper right part of my shaft seems to have expanded or bulged outward a bit.

Seriously fellas... my dong looks like a piece of hot steel that some blacksmith has pounded away to make it all misshapen for some art exhibit. Except we all know, there is nothing artistic about a wonky looking wood. : ) So, questions:

1. Has anyone experienced an active phase for this long? Any hope it will ever stop?
2. Has anyone ever experienced a slight bulge along the shaft?
3. As a follow up to question 1: I have no desire to get near a surgeons blade but I always know it’s a last resort... would this even be possible when it seems like I’m in a never ending active phase? It’s suppose to be stable before they operate. Nothing stable after 3 years for me.
4. Any recommendations on how to proceed?
5. Currently working in Turkey. Any recommendations on doctors in the country or European countries close by?

I should say that I haven’t done consistent VED in awhile. I’ve tried to start back up again but I’m in a very busy life phase and it’s hard to be consistent. I also have stopped taking the supplements so I suppose I’ll start that again.

On the positive side, I’ve always tried to find things to be thankful for in this ordeal, my wife has been awesome. We even got pregnant with out first after my diagnosis and now have number two on the way. So I am able to have sex still and she has been really supportive in all of this. Amazing woman she is. Lastly, so far no Erectile Dysfunction and the pain has been limited to the last 4-5 months as more plaques developed. Still not severe. Prior to that, no pain.

Please shoot me any thoughts or feedback on this thread. It is much appreciated.

-Rhino
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TonySa

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Re: Still in Active Phase, 3 Years In and Other Details
« Reply #1 on: January 03, 2019, 01:59:12 PM »

Have you read the survival guide?  Here it is.  Peyronies Survival Guide - Information for New Members - Peyronies Society Forums
We do have members who report extended active phase or recurrences.  An experienced peyronies specialist can help determine if you are a surgery candidate.  I’d recommend restarting VED and/or traction.  Also, daily low dose PDE5 to remodel plaque and possibly pentox which may help w pain.  Also, diclofenac sodium gel for pain.
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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.
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