Health Organization for Pudendal Education

I am a 34 yr old woman. 5 weeks ago, my symptoms started VERY suddenly one night: the outside of my vagina (every part outside and some on the inside), and perineum felt like it was on fire and was burning (icy hot patches). Other symptoms like feeling urinary urgency, low back pain, rectal pain/tingle. I also feel on and off a sensation like something is stuck inside the vagina like a tampon or ball. These symptoms change in frequency and pain level but it has not gone away in 5 weeks as of today. Most days are really bad. Nothing has helped other than I do feel some MINOR relief with oral muscle relaxer (cyclobenzaprine). No topicals, prescription baclofen amitriptyline cream, OTC pain meds, baths, etc.) Doctors originally thought possible genital herpes but that has been ruled out. Next, it was vulvodynia but I am able to be touched without tensing up so my doctor doesn't think that is it. The Latest: pelvic floor dysfunction. I start pelvic floor therapy in 5 days and I am hanging onto hope. Diagnostics: some bloodwork (stds, herpes, etc) and a transvaginal ultrasound have been performed. I do have a new small fibroid noted on ultrasound in my uterus. These past 5 weeks have been hell. I googled my symptoms and found Pudendal nerve entrapment. I do have numbness, back issues, sitting down does hurt but it is tolerable. I am able to sleep through the night however, when I wake up, I can still feel my symptoms and I wake up with them. I did have sex and it did not hurt during the act but I felt pain an hour afterward. I have had on and off low back pain and problems since I was 16.. I did have to go to PT for back pain for 3 months last year. I am worried it has to be my nerves and I am worried because I am getting pushed around from doctor to doctor all while trying to maintain a full time job and my life with my boyfriend and family. I am desperate to get help but I have been pushed around by many doctors over 5 weeks. I think I have been to the doctors 10+ times in 5 weeks.

Any advice or help? I feel alone and I am scared. Thank you.

You are not alone. Same here, it has been 3 days but im on the same boat.

Get an MRI for your lumbar/sacral spine as the nerve might be entrapped there, and see a neurosurgeon for opinion.

Then go to an urologist specialized in PN entrapment ( I used topdoctors to locate one) or to the pain management unit so you can diagnose with a nerve block.

If the PT doesnt help, then youll probably need surgery either in the lumbar/sacral disc if the MRI shows something like s L5-S1 herniation, or you will need surgery for PNE.

This is what I gathered from reading around here, try to exhaust the PT first.