Pudendal Nerve Suffer for almost 20 yrs. Advice Appreciated

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Pudendal Nerve Suffer for almost 20 yrs. Advice Appreciated

Postby Sleepy8727 » Tue Mar 21, 2017 7:23 am

Here's my story.

I was a wrestler in HS. I was also hit by a car twice while riding a bicycle when I was a teen. Weirdly I had an acute case of bladder frequency/urgency at a young age but then it went away until I was 22. I'm 42 now.

About 20 years ago I started with sciatica pain that led into severe burning at the tip of my penis and bladder frequency/urgency.
I went to a urologist, nothing found, nothing helped.
I ended up at a Chiropractors office and they found I had a spondylothesis at L5-S1. Their treatment for that seemed to help my pain for about five years.
The pain came back. This time the Chiropractor put me on a decompression machine. This helped the pain for aobut 10 years. Not as much but had it down to a 3-4.
About 2-3 years ago the pain slowly started to come back with a vengeance. Aside from nerve pain, bladder frequency, I now had a pain at the bottom of my right foot. Chiropractic didn't help this time. Back surgeons said there wasn't any reason for my symptoms.
I ended back at the Urologist. He sent me to a Pelvic Floor PT. She sent me for a Pelvic MRI that showed Bilateral Vascular Pelvic Congestion.
The Vascular surgeon noted a lot of collateral veins and went in to embolize. He found I had May Thurner Syndrome and stented open my left Iliac Vein in two locations.
Pain seemed slightly better. But wasn't lasting.
I went to have a consult with Dr. Prologo. He did a diagnostic CT nerve block. This brought pain down to a 2. But the pain seems much worse now.
Do I need to worry that the nerve was further damaged from the nerve block?

This is driving me absolutely crazy. I get some relief here and there but then can't duplicate it. I just feel all alone down here in south FL. There doesn't seem to be anyone around that knows anything about the Pudendal Nerve.

Any suggestions are appreciated. OR any of your thoughts. Would love to know what you think about my case.
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Re: Pudendal Nerve Suffer for almost 20 yrs. Advice Apprecia

Postby Violet M » Sun Apr 02, 2017 12:44 am

How long ago did you have the nerve block? It's pretty common to have a few hours of improved pain after a nerve block and then a flare-up for a month or so but I don't know when your nerve block was. Maybe you could contact Dr. Prologo and ask him what to make of the results after your nerve block.

Another option is to contact Tracy Sher in Florida and see if she knows any PT's in your area who treat PN if you haven't already tried the PT route. She participates in training of other PT's so she might know someone. http://www.pudendalhope.info/node/63#FL

PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Violet M
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Re: Pudendal Nerve Suffer for almost 20 yrs. Advice Apprecia

Postby szuse » Fri Apr 14, 2017 7:22 pm

Dayum. This is a long time of pain. Do they have special clinics for chronic pain where you live? That's not really treating the causes, but my provide some relief.

Not sure about the health system in the US, and if it has those specialized clinics within a clinic,

The one in Vienna (Austria) is open daily from 8 to 3pm, for pain patients only: http://www.akhwien.at/default.aspx?pid=125
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