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Author Topic: After 4 years with pain, how I recovered  (Read 4596 times)

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puisoneus

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After 4 years with pain, how I recovered
« on: November 17, 2013, 07:30:17 PM »

Hello guys, I wasn't sure where to post this, as it implies therapeutic elements, but I thought I could help some people by posting about my experience.

I am 26 and I have had Peyronies Disease since 2009 with excruciating pain for the better part of 3 years. Early on, I couldn't even have an erection without feeling a burning, diffuse, severe pain which was both inflammatory and neuropathic in quality. I had only slight deformity, however just touching the skin was pure agony. I didn't have a plaque per se but 5-6 circumferential lesions around the full girth of the penis which were indurated. My sex life was non-existent and I was severely depressed and hopeless. I saw two urologists at the time which diagnosed me with inflammatory Peyronies Disease and dorsal nerve damage.

Being an MD myself (although, still in residency training and in a subspecialty far removed from urology, but nevertheless), my treatment options were more of a democratic process with one of the urologists, who respected my expertise and was more open minded. I have a tried a host of treatments in the past, including pretty much all oral treatments, traction, Lyrica, SSRI's, Pentox, etc. I had also tried ionophoresis with Verapamil to no avail. The pain slightly but steadily decreased throughout the years, there was a continuing natural healing process albeit an extremely slow one, and as you know, neuropathic pain is notoriously difficult to treat. I still felt excruciating pain when touching the lesions directly after 3+ years of dealing with this debilitating and horrible disease.

In early 2013 I started getting very familiar with neuropathic pain treatments, both as part of my training and also as a personal quest for a solution. I convinced my urologist to prescribe some topical Kenalog (0.5%) which provided a slight but noticeable benefit to the pain. I began researching corticosteroid injections specifically for Peyronie's, as these are widely used for a variety of neuropathic and inflammatory pain syndromes. This study which I am sure was already posted on these boards: Severe, Disabling, and/or Chronic Penile Pain Associated With Peyronie Disease: Management With Subcutaneous Steroid Injection - Dickstein - 2013 - Journal of Andrology - Wiley Online Library describes the treatment approach very well. I took an appointment with an anesthesiologist in a private pain management clinic and convinced him to try a small subcutaneous injection of Kenalog on September 6th, 2013. The pain worsened in the next 4 days as is typical with these types of injections, however there was a 70% decrease in the pain over the next few weeks, with no side effects (the risk of subcutaneous atrophy being the most concerning). There was some depigmentation (2mm square area of whitened skin) but this is cosmetic in nature and barely noticeable. The decrease in pain has been durable and I am scheduled for a repeat injection December 6th.

I thought I would share with you my treatment experience which really has made a night and day difference. I know a lot of you guys are struggling with debilitating pain and I feel you.

If you have any questions about this treatment modality, or about my experience in trying to ameliorate the pain for the better part of 4 years, or general advice, you can reach me on Skype (I am online quite often) for a text conversation: wu.lateralus. I very rarely check my PM's here.

Cheers and good luck to all,
puisoneus
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Thisismyusername

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Re: After 4 years with pain, how I recovered
« Reply #1 on: November 18, 2013, 06:07:22 PM »

Thank you for posting about this.  I have been in pain for 7 months now and if things don't get better over time or with physical therapy for CPPS I will definitely consider this approach.  If so I will get in touch.  I doubt I would try this until the summer though because I'm still hoping something less invasive could help. 

Can you tell us if your pain was only when erect or if it was while flaccid too?  An unlucky minority of members on this forum, myself included, are suffering from pain every moment of every day. 
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