u/Rose-Raven

Hi everyone! I’ve been a long-time lurker of this sub since beginning my own CUTI journey back in 2023, with the worst of it taking place between June of 2025 to present. I just wanted to say to the women on here—PLEASE consider your IUD, if you have one, as a potential culprit.

I read probably every single post about CUTI/IC/horrific cycle of symptoms with no positive cultures, and was severely depressed and even having suicidal thoughts (extremely unlike me) from being in 24/7 pain (urgency, burning urethral sensation, pelvic pain) and had seen multiple urologists and tried out pelvic floor PT before finally deciding to take the leap and remove my IUD this week.

It was night and day! My IUD was a bit stubborn to remove and I even felt multiple pops inside my uterus before my OB was able to pull it out completely, and he mentioned it was possible it could have been slightly embedded in my cervix or surrounding tissues. My UTI-like symptoms lingered for a day or two, but by day 4 post-removal, I feel like I have my life and personality back. It’s almost hard to believe a week ago I was crying every day to my husband about how much pain I was in. Every doctor wants to talk about how there’s no evidence that IUDs can cause urinary symptoms, but this has taught me that WE know our bodies best, and if something doesn’t feel right, we should advocate for ourselves and our experience.

I’ll provide updates in the coming weeks/months as to whether I have truly been cured, but I want others to know this in case they might be experiencing the same frustrating cycle. There is a light at the end of the tunnel!

As the post title indicates, I’m coming up on my 1-year mark of having constant UTI symptoms. It all started back in nJune of 2025. I got a prescription for Bactrim (3 days), which truly did nothing for my symptoms, though they resolved temporarily between July and September. Unfortunately, everything came back in full force at the beginning of September, and it took almost two months to get a positive culture from my OBGYN and PCR from my first urologist (who initially wanted to diagnose me with IC) for E. Faecalis and Klebsiella. I was prescribed Augmentin (10-day course) which didn’t begin to really touch the pain until day 8. By day 10 I was feeling almost completely normal (Yay!) until my symptoms returned about two weeks later (Boo). At this point, I wasn’t interested in returning to my first urologist, so I started from the beginning with finding a primary care doctor, who initially had me on a 3-month course of Macrobid, which did nothing by month 1, so we decided to discontinue. All of my cultures were coming back negative, so she referred me to another urologist in March of this year. That urologist ran another PCR which caught still-high counts of E. Faecalis, so I was prescribed 7 more days of Augmentin, which, surprise, did nothing. I just did another PCR test a couple weeks ago which apparently came back with only mixed flora, and this urologist let me know that unfortunately, there’s not much she can do by way of treatment from this point onward for my symptoms, which have consistently been mostly urethral burning and pelvic pain (not so much urgency).

I’ve since begun taking regular probiotics and Myrrh every day, and started pelvic floor therapy last week. I feel like I am completely out of options and driving myself into a deep depression. I’m scared to have sex and dread going to the bathroom. I feel as though PT needs to work, or else I’m not sure how much longer I can go on feeling like this. Every time I think back at fun trips or memories from the past year, they’re clouded by remembering how awful I felt with these UTI symptoms. Seeking words of encouragement or advice from those who kicked residual symptoms or an infection that was hiding from PCR/cultures.

Edit: I should also mention I’m on the Mirena IUD and have been since 2022 (4 years). I’d love to start trying to get pregnant but want to ensure my UTI/symptoms are resolved before then, so I hesitate to want to test out removing my IUD.