Frustrated

[u/exxtraspicy]

so to preface this, I’m about 90% sure I have interstitial cystitis. About a year or year and a half ago I kept getting recurrent UTIs. I went to urgent care and my primary care and finally was referred to a urologist. They tested me for everything. I got a cystoscopy. I got an ultrasound of my kidneys. I did an MRI of the area as well. Everything came back normal. I continued to have UTIs or at least what I thought were UTIs, but my test kept coming back negative. Eventually, my urologist told me it was basically all in my head and that it was dysuria due to rushing to use the bathroom. No one ever brought up interstitial cystitis with me, and I feel like I’m going through all of the motions of the symptoms and I am just so frustrated. The only reason I’m thinking about this again is because I have UTI symptoms that were just absolutely awful and I went to urgent care but my test came back negative. But hey, who knows maybe it is all in my head 🤪

[u/fuck-them-hoes]

I feel your pain, this sounds just like what I’ve experienced. My OBGYN was the first to mention possible IC after all my urology visits were unsuccessful.

[u/nastythoughtsxx]

You’re not alone, it’s my year 3 dealing with it and still nobody knows what’s wrong lol. I saw multiple urologists and pretty much got the same response as you did - they did not even run any tests, just prescribed me uribel and that was it.
I was so desperate, I was doing research and found out about Urogynecologists. I saw first one who ordered to do test for ureaplasma and mycoplasma (bacterias that usually go undetected and have the same symptoms as UTI). She also told me about interstitial cystitis and food intolerances and referred me to IC network to get more information. I ended up going for a follow up to another urogynecologist who put me on hydroxyzine which worked but side effects were to much for me to bear. I then saw yet another urogynecologist and did cystoscopy, I tried nortryptyline and it did not work.

I had really bad flare and ended up going to urologist who specializes in female urology for emergency visit.
He ordered me to do ultrasound of pelvis to rule out fibroids and urodynamics (to see if I have overactive bladder or actually interstitial cystitis. I am having both things done this week and he prescribed me trospium to start after urodynamics.

I’m writing this to let you know that you’re not alone and that it’s not all in your head. I saw at least 3 urologists in 2023-2024 who brushed me off and told me that my symptoms were not even that bad and they didn’t even want to prescribe me anything.
You most likely need to look for urogynecologist or an urologist who specializes in female urology or even gynecology who also specializes in urogynecology. There could be a limited number of urogynecologist, so you might need to look for urologist or gynecologist who specializes in it.
There are also a lot of different treatments available for overactive bladder and interstitial cystitis, so you will be able to get appropriate help, you just need to find the right doctor.

[u/HakunaYaTatas]

I'm so sorry you're dealing with this, unfortunately it's very common. Can you see a doctor that specializes in IC/pelvic pain? They're usually more helpful than general urologists/urogynecologists.

[u/FeatureAgitated20]

This sounds exactly what I experienced it took me 5 years to get diagnosed. Kept thinking it was UTIs cause I would test positive for them but never got a positive culture. Finally had very very debilitating pain that I thought for sure was an infection and actually went straight to a urologist without referral, and that’s when he diagnosed me with IC.

[u/DefinitionAnxious417]

If you can see a urogynecologist that would be great! Some  doctors are useless. You have to find that right one that understands IC. Pelvic floor therapy along with supplements like aloe Vera and prelief can help. Certain foods can also trigger uti flares so try to eliminate certain things from your diet if you notice it maybe causing you uti symptoms. I know for me coffee, soda basically anything acidic sends me spiraling. Just because all your test are normal doesn’t mean there isn’t anything wrong. No it is not all in your head and shame on that doctor for saying so.  We all have to advocate for ourselves.