Health Organization for Pudendal Education

My pain guy said this new pain med from vertex was worth a try. It’s a a new class of pain med for acute pain. I tried it during a flare. It didn’t do anything for PN.

I have two bouts of PN. One for 5 years. Then went away for 6 years. Now it’s back going on the 3 years. There is one event that always reduces my pain from 6-7 to almost 0. When I get a cold or fever! It’s not in my head. I asked chat gpt why. Turns out it’s a well known phenomenon for nerve pain, ...

Also I had Pn for 5 years. Went away for 6 years. Now it’s back going on 3 years. It’s heart breaking.

The extended release tramadol not in my formulary so I take regular 50 mg ones. If I didn’t need bowel movements I might be fine! It causes flares. I take only one day and hope it gets me through the day. I had 12 day run of no pain and took no tramadol. This six weeks after PN block. Just goes to s...

I had a consult. Injection via ultrasound by a nurse ain’t for me

I had both hips scoped to repair labrum. Did nothing for my PN

So I got PN from bike riding. But I’ve tried every common drug out there for this. The only thing that works is tramadol 50 mg lasts about 5 hours. I’ve had PN for .8 years. Only advice is to not chase pain. If tramadol works take At first sign of pain. I awake each day with minimal pain. Then it st...

Tried a PN nerve block last week. National spine and pain in Reston VA does them but only at ischial spine. Almost went to UMD for a fancier block but they said it’s a 6 hour day and you need a complete physical to do it! As usual with any nerve blocks I have tried over 8 years it caused a flare up ...

Yes! Open a board section for dating. Would be great to meet someone in same boat

I get maybe 5 days a month with no pain. The rest are bad days or really bad days. I’ve kept records of each day recording everything from weather to exercise to diet. Trying to figure out what caused those good days. Anyone else have this pattern? If so have you IDed any causes of those few gloriou...