Pudendal Nerve Entrapment/Neuropathy/Damage

Sorry you're feeling such pain and isolation finding help. Not a combo anyone wants to be in. I've been in groin pain 6yrs with symptoms that none of many tests, procedures & injections have relieved or explained. Difficulties sitting, walking, standing & few periods of relief per day. Not sure what to try next & also in Canada. There's not much help for pain. Nor many suggestions re next steps. Inner right buttock pain feels like a narrow 6 in band that gets so tight it seems like it might snap.
About half an inside upper pube area constant circular maybe nerve related pulsing. Have a sense of a balloon like fullness that can feel light or heavy, larger or smaller. Ugh. Not sure what to try next. Any of this similar to your symptoms? Wishing us both relief & understanding of wtf is going on. Hang in there. You're definitely not alone & great peeps here. Tah 4 now.

I will tell you what to do. I had this monster for 14 years before I was cured in 2 weeks. I was given the anti-seizure drug, Topamax off-label for a daily persistent migraine. It relieved the pain in my butt in 2 weeks, but did nothing for my headache. My pelvic therapist told me a year later that she had heard of this. It is worth a try. Topamax had nasty side effects but you won't need to take it long. Worth a shot, right?

@mikaylar I took Topamax for a few months and I had such horrible fatigue and zero appetite that I had to stop it. And it didn’t help my PN 🙁

I have nerve entrapment but not in that area, I have multiple nerve entrapments in my leg and recently had surgery to decompress the entrapments and insert a peripheral nerve stimulator in the event I still have pain after I heal.

I wish you luck and you can message me anytime for support. All nerve enteapments suck and there isn't a lot of awareness of just how painful and functionally limiting they can be for day to day activities. Stay strong.

I was positively diagnosed with PNE by Doctor Jordan in Santa Monica, CA, with a proprietary procedure in 2004; it was confirmed by specialists in Houston Texas in 2005. I agree, though, that pelvic floor disorders are notoriously complex; PNE did not explain all my symptoms, just most of them. I got PN bilateral nerve release surgery in mid-2005, with initial improvements, but within 6 months was doing poorly again. Then I changed my entire work lifestyle and did substantially better over time, eventually becoming nearly completely pain-free by 2010. I relapsed in 2012, but refused to change my life again until late 2013 when a specialist (Dr Weiss, San Francisco, highly recommended if he still practices) told me to take 3 months off work and stop sitting altogether during that time or I'd become a bedridden invalid. Shocked, but obedient, I did that. I returned to work thereafter 20 hours/week. Now in 2018 I can work 36 hours/week, sit up to 2 hours depending upon the surface and what I am doing, drive myself to store, and I'm down to just taking 30 mg Cymbalta a day (I was taking 3200 mg of Neurontin/day back in 2004!). Life is SO much better. Strongly suggest you look up pudendalhope ...excellent resources for PNE sufferer.

@doingbetter
I have had pudendal nerve pain for 13 years and it was finally diagnosed by a doctor
at Emory in Atlanta, Ga 11/17/21. I have tried many medications. I have just started taking 30 milligrams of cymbalta. I tried it before but I stopped taking it after 2 weeks because it made my head feel numb. I will take it for 2 months if it helps the pain from pudendal neuralgia. Did the 3200 mg of something help? Thanks for the message. I am going to chat with Dr Usal in New Jersey who does surgery. My pain doctor advised against the surgery because it could make the pain worse and it would be permanent. I have also used a Pudendal Nerve
Stimulator which decreased the pain by 50 %. I hope cymbalta works for me.