DO NOT GIVE up in trying to find help ! I had lingual nerve damage and also - "nobody heard of it"- bozos !!!! I am sorry but some doctors ARE ! If a doctor "never heard of it" he/she should go back to medical library and look for the answer and it will be found. Nothing makes me more angry that doctor dismissing somebody's pain - WT* ???? I had to go through ton of medical papers and by reading them found the name of a doctor in Canada who specialized in "burning mouth syndrome" and payed for consultations via phone. To make the story short after that I found an oral pathologist in my area that had PhD at UCSF and who helped me immediately ! Pain was gone in 2 weeks with prescribed medication. She not only "heard of it" but was in disbelief that I had to see so many doctors (inclooding a Stanford one) that were clueless.

Yes, you need to find good neurologist. Find one that was involved in research , not only lazily holding some small practice and is in his 80-ies. If you have university hospital near by, look into that. There are many painful disorders in genitourinary tract that are nerve related , both among women and men ! THERE IS help for those condition via medication, bio-feedback , etc , just find a good doctor that treats patients with those conditions 👍.

Wishing you the best of luck 💗