Anyone out there diagnosed with Pudendal Neuralgia?

I am currently getting I touch with research department of neurology in Tampa Florida where I’m told they do research on pudendal nerve pain

Welcome @tessielou and @nessafarrow, It's great to see that you have connected and can share your experience with pudendal neuralgia. It sounds like both of you have been dealing with the pain for some time with not much relief. @mikaylar and others may be able to share their experience with you also. If you haven't already seen it, there is some information from the NIH on the treatment and management of Pudendal Nerve Entrapment - https://www.ncbi.nlm.nih.gov/books/NBK544272/.

@tessielou and @nessafarrow, have you done any research on the condition?

What type of stimulator? SCS, DRG or Spirit 60 day stimulator?

Can you share more about this? I belong to several facebook groups for PN sufferers and I never heard about the Tampa research. I’d like to share it with the groups.

Hello,

Did you get some help yet? It's hard when you're not sure what is causing pain. I hear ya.

I haven't been diagnosed with that but one Physio Therapist suggested it could be the cause of the pain I experience.

How long have you been hurting? I've tried many types of treatments & the usual gamit of tests. In a few wks I'm having an MRI of sacrum area. It does feel like a nerve or blood vessel/s are at play. Years ago had lower back surgery that was successful. In a 3 wk period the muscles of my right calf had seized to the point that it was impossible for that foot to be on the ground. Took 1 year to get it sorted. I sure hope you've received some help here. Take care.

May I add something? I had this monster for 14 years and the final cure was the an anti-seizure medication that was off label for an unrelated situation. I took it for 2 weeks and it was gone. When I told my pelvic therapist a year later she said, she had heard of that. Duh! Couldn't she mention it to me? The drug was Topamax. Check it out please. It makes sense.........it's the nerves and they could be in a spasm.

I have tried every medicine and surgery known to man. I did take Topamax and, interestingly enough, I had to stop it because it was causing major loss of appetite and constant fatigue. The reason that I say interestingly enough is because I am thin and watch my weight. So, one would think that loss of appetite is not a bad thing. But it was horrible…food made me sick to my stomach. And it didn’t touch my pain.

I started with urinary symptoms in July '24. By March "25, I had the anal pain while working with pelvic floor PT. Now that I have tried conservative management, PT, Duloxetine, and blocks, I am faced with surgery or pulsed radiofrequency or cryoablation. I have appt. for the latter 2 next week. I spoke with surgeon in Nov. I choose not to go to long events like plays or flights. It has been rather miserable.

SV

@bunnybear were you able to get off of meds and just have the SCS? I will be having my permanent implant in a month. I’d love to get rid of lyrica. I don’t like the brain fog and dementia risk.

@idr

Hello, Might I ask what SCS means? Sounds like maybe an implant?

I'm not diagnosed with the condition but groin pain is familiar.

Also wondering what the most difficult issue is with it?

Hope you're all getting help along the way.

Cheerio, ♡☆♡☆♡