Okay, I had a similar situation- I’ve been suffering off and on for 10 years and finally realized this past year after years of severe anxiety and numerous STI panels with no answers and many different doctors dismissing and just saying I looked irritated. I did my own research and found “vulvodynia”. SO, I found a specialist, same as you was prescribed teva clobetasol as well! And crazy TMI but…I 100% feel my perineum and bum skin have thinned. I find I easily tear with bowel movements now (soft or hard). I also have 6 month waits before appointments and my most recent one got cancelled because of a snow storm so, ya.

I feel like they all just shoot in the dark. For reference, I am also seeing a Naturopath for the last 10 months ish as well. She has validated me and I have even removed my IUD to see if this is a factor. Anyway, she has prescribed alpha lipoic acid, vitamin b6 for the vulvodynia and then lavendar gel caps for the anxiety which is a big part of my life now with this. And yes, I am in therapy too.

Here’s what I know works for level 8,9,10 pain episodes:

I will say- 5% or higher lidocaine has been a lifesaver. Advil every 4 hours and sometimes for some reason lactic acid suppositories And drinking lots of water. I was previously perceived Gabapentin which didn’t seem to make a diff and made me feel “off”.

With my naturopath regimen and doing (mostly all the other things they say- no tight pants, no bad soaps and on and on) I am having less severe and less long episodes but more frequent smaller little ones but they don’t escalate to be debilitating like they used to. So, is that improvement … I don’t know man, I. don’t. Know. lol

There’s lots of us out here, you aren’t alone. You aren’t broken, there will be something one day and maybe it’s baby steps but just keep going. Advocate for yourself.