Advice on what to ask at my urogyne app? Symptoms much improved but it doesn't mean I'm okay
Been waiting over a year to finally see a urogynaecologist, but now I don't really know what to ask them. I've been slowly becoming symptom free over the last few months. I'm now in a spot I don't feel like any intervention would help improve my symptoms, but I don't want to waste this appointment. I'm afraid these symptoms may come back again one day, but I feel like I'm just going to be told to kick rocks until then.
Any advice on how I might make the most of this appointment?
Background summary:
Had this same IC type of flare up about 5 years ago, which eventually went away and I became symptom free. I think it took about 2 years before that happened
I seem to always get real UTI's after sex (dipstick tests negative, culture sometimes positive)
One day a UTI finally set me off and I got all these IC symptoms again, same as 5 years ago
Symptoms have improved now, this is about 1.5 years after the current 'IC flare' started. I'm quoting flare here because I don't know if it is IC
Despite having all the IC symptoms, 2-3 urologists have said it doesn't look like IC, but cannot offer an alternative idea
Cystoscopy negative, twice
Never tried any IC meds, never been offered
I do have ulcerative colitis and some theories suggest my symptoms may be due to colon inflammation (which is present, but mild)
Gastroenterologist denies any link between ulcerative colitis (gut inflammation) and my uro symptoms. I know it is possible
Current:
- I don't think I could safely try Hiprex, it sounds like it will set me off
- I'm still somewhat sensitive to foods but it's minor now compared to before
- Some foods seem to have me needing to pee really frequently, but has now become somewhat uncommon and not sure which foods actually trigger it despite keeping track. Seems random
- I don't think my symptoms are bad enough anymore to want to try IC meds
History if interested:
Back in Feb last year, I had a UTI that wouldn't go away, or rather the symptoms wouldn't. Tested positive at first, and then negative. Antibiotics stopped having any effect so deemed it not a UTI anymore. Antibiotics got rid of it initially, basically the symptoms came back afterwards. I'm 99% sure the original was a real UTI. Feel free to check post history for more detailed info.
Since that happened, I became incredibly sensitive to foods. I couldn't eat anything other than potatoes, rice, chicken etc. I'd be burning and stinging so bad if I did eat something else. Had flank pain too. Sometimes the pain would still show up even if I didn't touch the forbidden foods.
1.5 years later I started to feel less sensitive and have slowly re-introduced the forbidden foods. Most of them are fine or cause mild symptoms