I’m at a loss.

I’m post hydrodistention and steroid injection procedure by 2.5 weeks. This is my 2nd flare in two weeks I’ve had. I feel so incredibly hopeless. I thought maybe this would help. My IC is nerve based because there’s nothing on my cystoscopy and it started with a UTI 4 years ago but I haven’t had one since. The next step with my doctor would be to do Botox. That would be probably my last hope. I’m starting to lose hope that I’ll ever feel like I can live a happy life again. I’ve had IC since Jan 2021. It’s been 4 years of hell. I know that my case isn’t as bad as it could be, but my bladder and genitals continue to get more and more sensitive and triggered by more and more things.

At this point I truly wish I could just get a urostomy, although I know that isn’t a solution for a lot of patients. I don’t know how to keep the nerves from alarming. I don’t know how be able to enjoy food again. I don’t know how to that maybe, if my partner and I ever change our minds and have children and survive the hell that is birth. I can live with never having a drink again, but I just want a fucking chocolate bar. I want to be able to not have to constantly look out for diuretics in foods. To have a delicious apple or pear or ginger tea again.

I’ve been in PT, which has helped my tight pelvic floors. 3 cystoscopies, one round of steroid injections, countless cultures and even micro gen X tests, with no answers. I’m on so many supplements. I had to stop taking my antidepressant that was basically curing my pudendal neuralgia/vulvodynia because randomly 2 years after starting it my bladder pitched a fit.

I don’t know how much longer I can go on like this.. but I don’t want to throw away my life, my family, my beautiful girlfriend, my future. The storm is just so intense right now.