I’m so frustrated!
I was diagnosed with IC over a year ago after repeated trips to urgent care for UTI-like pain and several unneeded rounds of antibiotics. It was a pretty simple diagnosis considering that I had just about all of the standard symptoms of IC (bladder pressure and pain, feeling like my bladder is completely full when it’s not, pain during sex, lower back pain, and the same weird smell that other people on this sub have discussed)
After receiving the IC diagnosis from a gynecologist, I had to wait months longer to get into urology. This urologist was immediately dismissive to me on the basis that I had previously missed a follow up appointment for a kidney stone that I had removed two years ago (I didn’t even know there was a follow up scheduled.) Then, as soon as she heard that my IC diagnosis was given from a gynecologist and not a urologist, she discounted basically everything that came out of my mouth and told me that she’s almost certain I don’t have IC and instead either have a UTI or leftover particles of the kidney stone. I think part of this was because I’m 22, but while I know that I’m younger than most people with IC, that is literally the only thing about me that isn’t textbook IC presentation.
This felt weird to me but I was like umm…okay I guess I’ll go drop off another urine sample and do another xray.
She literally ghosted me after this. Deleted my IC diagnosis from my chart then never responded or followed up with any of my test results or gave any guidance as to what the next steps would be. I had to message her two separate times and wait 6 weeks for her to finally reply and tell me that I do not have a UTI or any evidence of leftover particles from the kidney stone. Oh, so the diagnosis I received over a year ago and the thing I was meant to discuss in the first place was actually valid? Shocking!
She still did not update my chart to correct the diagnosis and is now trying to make me do other tests like a CT scan even though I did 3 separate CT scans at the same hospital last year. I don’t have coverage that allows me to easily see another provider so I am feeling so frustrated. I have been living with bladder discomfort 24/7 for longer than I can even remember at this point and I don’t know what I’m supposed to do to get help when I’m being gaslit about my condition.