Last July I got my first UTI ever. I was prescribed Bactrim, it felt like it cleared up for a week, then came back again. I took Macrobid and still had symptoms (urgency), but my culture was clear. After a few weeks the urgency subsided. Approximately two months later, I felt the pressure and urgency of a UTI again. I was again prescribed Macrobid, and again my symptoms remained but my culture was clear. I was referred to a urologist who ordered a CAT scan. It showed I had a right ureteral stricture. I had a cystoscopy with stent placement and immediately felt relief when the stent was removed. For the first time in weeks, I had no urgency. That reprieve only last 2 weeks before I had urgency again. Positive urine culture.
A renogram was ordered, which showed my ureter was still open and my kidneys were working perfectly. I was then prescribed the first of about a dozen antibiotics. I never felt any relief after taking them, though some days my symptoms were better than others.Every time I finished a round, I'd have a culture which was always positive for enterococcus. I started Vesicare in case I had overactive bladder in addition to relapsing recurrent UTI, and sometimes it seems to help a lot, and other days I have constant urgency.
I've now been to THREE urologists. No one knows what's wrong. I've been taking an evening Macrobid for three months with no change to the cultures. They are always low level (10k-49k colonies per ml) and always enterococcus. I take a daily probiotic, Macrobid, Vesicare, D-Mannose, Monolaurin, Cranberry pill and Biofilm Defense. If I have a culure taken, even if I just finished a round of antibiotics the day before and faithfully take my Macrobid at night, it is always positive. I have been on Cipro, Keflex and Macrobid over and over again.
Today the nurse at urologist #1 told me there as nothing they could do for me other than try a daily Bactrim (which urologist #3 said was ineffective towards enterococcus) or daily methenamine, which would turn elements of my urine into formaldehyde (and studies show is only occasionally effective). Then she actually said, "You might just have this infection the rest of your life. That sometimes happens to women after they have kids."
I just can't believe that! A constant and chronic infection is normal? I asked if I could try IV antibiotics, but she said my levels were too low. Of course they're low - I've been pumping my body full of antibiotics for months! Shouldn't they instead be asking how I can still be positive even though all my cultures say the bacteria is not antibiotic resistant? I'm at my wits end right now. My PCP is writing me a script for Cipro for 14 days because he took a culture the day before I went to see the specialist at the big university hospital that took forever to get an appt with - only to have them do a dip test and then not send it out for culture!!! And when I asked Uro #3 if I could go on something stronger than the Macrobid I'd already been on for 3 months, he said he wanted to save Cipro for when I had an infection - even after I very clearly told him that I ALWAYS have an infection (and then he still didn't get a culture)!
I'm going crazy! I understand that I might have both chronic UTI and overactive bladder, but there's no way to know if my bladder spasms are a result of OAB if my cultures are never clear. ANY feedback at all would be helpful. Urologist #2 was quickly dismissed because he said my low level results just meant I was contaminating all my clean catch samples. There was no way I was contaminating all of them with the exact same bacteria every time! What do I do? I feel bad to complain because if I only had OAB, my symptoms would be more than tolerable, but it's the idea of the infection festering in me since winter that's driving me nuts. On top of everything, we were considering having another baby, but I don't think I should get pregnant with an active, chronic infection.