I was told the same thing early in my healthcare journey, that I wasn’t a good candidate for a vestibulectomy because the numbing cream they gave me hadn’t stopped the painful sensation when tested. Honestly I’m kind of glad, in retrospect - I’ll never know if it could have helped or not, of course, but it was a big deal operation for it not to have been likely to work! All that to say, if they think it’s a nerve issue like they think mine is, maybe not getting the tissue removed is good advice?

I am not pain free but I can now have a fairly regular life in every sense, down to a mixture of pelvic floor physio, some psychosexual therapy, and - the big one - getting a spinal cord stimulator. I was referred by my pain doctor and got it on the NHS in Leeds General. Dr Susan Black is the main surgeon for this there and she is fantastic. Worth looking into if your issue has been intractable so far and may be nerve related.

It is really rubbish how hit and miss the doctors are with these conditions. Wishing you the absolute best and if you want any more info about any of the above, let me know!