Losing Hope
First time Redditor so please be kind.
Context: I have had a ton of UTIs in the past 3 years, but they've all been the simple kind. I get tested, the urine culture comes out positive, then I get a week of antibiotics, and everything is good.
Except for this last UTI. It started 3 months ago. I was on a prophylactic antibiotic given to me by a former PCP, so my UTI dipstick test and culture came out negative (new PCP says that very recent antibiotic usage can cause false negatives). I get two round of antibiotics, then after suffering for a week without antibiotics, the bacteria finally shows up -- Klebsiella.
And then the feedback loop from hell begins. Next test taken 5 days after antibiotic course completion shows Klebsiella and E. faecalis. Next test taken after that, 1 day after antibiotic course completion shows Pseudomonas. Next test taken after that, 3 days after antibiotic course completion, shows Klebsiella again. My urologist has explicitly refused antibiotics for longer than 10 days. I have now see 3 providers total for this (PCP, urologist, and urogynecologist), and each time, they say they won't give me antibiotics, but whenever I get another positive culture, they reluctantly prescribe me a week more of antibiotics. I believe my condition is treatable -- longer and stronger antibiotics -- but I feel like I'm not being listened to. My first urologist said maybe the pain was because of period cramps (I don't have a period anymore or any cramping as I have an IUD) or stress (I am stressed, but just because I've been in pain for the past 3 months).
Problem: Now, the bacteria is very resistant to most common antibiotics per the lab results, and my pain persists. Each provider has tried pushing an Interstitial Cystitis diagnosis, but I think that's a premature assumption to make -- after all, I didn't have any pain before my UTI started, expect when I had other confirmed UTIs. I know that once an IC diagnosis is given it is very hard to get UTI treatment, which is what I need right now. I still have flank pain whenever I am off antibiotics as well as swollen lymph nodes and live in fear of getting sepsis. My pain immediately gets better with antibiotics, then gets worse when the antibiotics end.
Question: Does anyone have any advice? I live in Massachussets, and have another appointment with an Infectious Disease doctor tomorrow, plus a new urologist appointment this Monday. Are there any fellow Mass residents who know of good doctors for this condition? I am trying to hold out hope, but worry they might just write it off as IC as well. Open to telehealth as well. I am grateful for any advice, kind words, harsh truths, comments, pretty much anything.
And if you are suffering with something similar to me, best of luck with your treatment and journey.