Out of curiosity, have you been checked out for endometriosis? It sounds a lot like how I was with endo. If you do have endo, a medication called Visanne is wonderful. Also you might look into birth control methods, as they can sometimes treat vulvodynia. Hope this helps!

I’ve got a friend who has lost jobs because of her pelvic pain and they are going to give her a full hysterectomy. She did want children but her quality of life is so bad with the pain she has had to make the decision to have it all out. I was sterilised with clips and my monthlies got heavier and heavier and I was having one good week a month. I begged for five years for a hysterectomy. I didn’t want children anyway. When I hit 30 they let me have one. It’s caused me more problems down the line but that’s a long story no one wants to know. But yes I’ve had pelvic pain for years and years. It feels like someone has put a sharp fishing hook on either side of my pelvis through my skin and they’re digging their points into the pelvic curved bits and are pulling it from behind. I still have my ovaries and one has a 5x7 cm collection of fluid on it. I did have lots of cysts on them both which were popped and drained but the one I have now has been there for years and they won’t operate. So I don’t know if I have the same pain as you I’ve never heard of what you’re asking. Or if I have I’ve forgotten. Stupid brain fog. 😂

In my 50’s I had that. Thought I must have some type of Pelvic cancer. Thought I was going crazy since different Doc’s said every thing is fine. Same with chest/rib pain thought I was having some kind of heart issue. ….just a ‘hypochondriac’. Now I know it’s fibromyalgia related. Gabapentin helped but took myself off that as according to AARP it’s the number one cause for dementia! I’m 71 and need my mind to be clear these days.

Wow! I’ve never heard of this. I googled vulvodynia and I have had pain in my vulva for years. I asked a GI doctor about it once and she just told me that IBS-c doesn’t cause the pain. I feel embarrassed to say anything to my doctor but maybe I can summon the courage.

I have asked the question before, if anyone has been diagnosed with Leschen sclerosis? Maybe it's the same or close. It's also a complication of fibromyalgia. It start off with itching, burning sensation. The labia minora starts to degenerate. Then it becomes very painfull. Only white Lux soap can be used in the beginning and as it deteriorates a liquid soap without any perfumes must be used. Daily cream must be used. One day a cortisone cream the the next SBR repaircream. Daily hygiene is very important and drying thoroughly after a wash is important.
In my case, I can't eat or drink any citrus, gas drinks, pineapple, wine etc. In South Africa I have met a couple of ladies with the same problem. Maybe this is what you have been diagnosed with and called something else in your country? Don't know for sure, just asking?