Hello cjmca -
I am very sorry that you have had such a hard time.
My story is a bit similar to yours in a couple of ways. My ovaries failed at 42 and it felt like hitting a brick wall at 100 miles an hour. I can't imagine how it was like for you, being so much younger.
The other way I feel our experiences are similar is that bladder pressure and pain are my worst symptoms.
When my ovaries first failed 12 years ago I felt I had cystitis and bladder pain for 18 months (nightmare) until I stumbled on Estrogel (HRT as estrogen gel) and everything gradually resolved. I had squillions of other symptoms but the bladder stuff plus perineal burning etc practically made me suicidal. I quit work and it was just unmanageable.
I was fine on Estrogel for about ten years + and then my doctor said I should try Tibolone (mimics estrogen without the risks) as I had been on estrogen for a long time. This was ok until I developed a horrible UTI last august and what I thought was thrush but was diagnosed eventually as vaginal atrophy 3 months ago.
I immediately returned to Estrogel and have taken Vagifem for almost a month now. Am still not well, though there is the occasional good day.
I still have horrible flares that involve urethral pain; burning perineum but most distressing of all, bladder pressure and quite frequently now, horrible bladder spasms. I am trying to figure out if it is VA, vulvodynia or PN. Or vulvodynia and PN as a result of VA due to low estrogen, I guess.
Its a nightmare and has taken over my life.
How are you doing ?
Kkay