Just diagnosed with Bladder Pain Syndrome / Interstitial Cystitis

Posted by lucy155 @lucy155, 6 days ago

With a history of 4-6 UTI's a year for over 8 years, I have been very frustrated with my medical team's inability to uncover the "why". 2022's UTI's have progressively gotten more frequent AND progressively more painful in the lower pelvic region. The pain includes the typical UTI systems of burning, feeling of frequent urination, but not being able to actually pee. In the last three months, I have had two emergency catherizations due to extreme urine retention. The UTI's seem to be recurring regardless of antibiotic treatment. Klebsiella is a new bacteria showing up in my cultures beginning in November, 2022. Since then I have had 6 UTI's. On Christmas Eve 2022, I had symptoms of a UTI during the day, by bedtime I had level 7-8 lower pelvic area bladder pain. I could not sleep. Took Tylenol, AZZO, and finally started Augmentin 875mg 2x/day for 7 days on my own knowing I was treating without a culture or doctors direction. I have had two more cultures done since then due to painful bladder (painful to walk) and other UTI symptoms. First one came back positive for Klesiella and e-coli. I was treated for 8 days with Augmentin. Bladder pain persisted and 10 days later another culture done, but came back negative for any infection! My bladder pain level is a constant 5-6, like walking around with a migraine headache in my pelvic region.

My PCP's physicians assistant, who I saw yesterday, suggested Bladder Pain Syndrome / Intercystal ?? as a possibility. Not much coming up on this Mayo site. A couple presentations showing up on You-Tube. Does anyone have this condition? What has helped getting the inflammation under control and ease the flare ups of bladder pain/UTI's?

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I thought I had this as well until I starting seeing blood in my urine. Blamed it on Hunner lesions. Then had a CT just to check and was diagnosed with bladder cancer after a subsequent cystoscopy. Make sure to rule that out. IC symptoms are so painful. And they can mimic other things.

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Thank you for your reply. I just came back from my urogydnocologists office where I learned how to self-cath in an effort to stop UTI's and bladder pain. Not fun! It's agreed that BPS/IC is a logical possibility. I had a cystoscopy done last month as part of a sigmoid colon resection surgery. The urologist said there was nothing unusual with the lining, but I did have a UTI. I also had 3 different pelvic CT done in 8 weeks for the colon perforation, but nothing was found on the bladder. I'm hoping for better answers with my new urogynocologist. I see her again next Friday.

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Oh okay. Sounds like you’re on the right track. Bladder pain is tough. Prayers to ya! Hang in there.

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Hi Lucy ~
I've experienced what you have over the last 10 years. The bladder infections just kept ramping up. Most of the time, I couldn't get into my primary doctor so had to go to an urgent care. They would prescribed and antibiotic but then not call to tell me whether I was on the correct one to rid me of whatever bacteria I was dealing with. Klebsiella was the worst infection (and the hardest) for me to get past. It took tworounds of antibiotics to clear. I had a cystoscopy several years ago by my urologist. When he told me I was dealing with intestitial cystitis 3.5 years ago now, I asked if he wanted to do another cystoscopy but he didn't. He started me on methenamine (prescription) twice a day, along with D-Mannose (over the counter) twice a day. They are a combination to help keep the bladder pH stable and bacteria won't stick to the lining of the bladder but sloughs off. I took that combination for almost 3 years and haven't had a bladder infection since. However, in 2022 I showed up with early Stage Three chronic kidney disease. After some indepth research, I was able to find that methenamine is hard on the kidneys and likely that has been why my kidneys are progressing downward. I was afraid to totally come off the methenamine for fear my bladder issues would start again, so the urologist's P.A. cut my methenamine in half per day, along with the D-Mannose dosage. I did fine with that & now I am down to only half a pill of methenamine once a day (at night) and one D-Mannose once a day (in the morning). I've been on this regimen for over three months and am doing fine. Another over-the-counter pill I was told I could use is called Prelief but I haven't actually felt the need to use it. It's kind of a prophylactic for irritable bladder, as you take it before you eat something you know might irritate and cause bladder burning. I truly hope you will find something to help alleviate your symptoms. This panacea seems to have ended my constant bladder irritation & infections but if you & your medical team use it, just stay on top of your kidney lab results.

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Hi there-
I’m so, so sorry to hear of your UTI’s and now IC/BPS diagnosis. It took me 3.5 years to get diagnosed with IC, as Mayo was good at finding other things wrong with me, but not the root. Likely because after my hysterectomy, they just shoved me over to the Pain Clinic, rather than trying to get an answer. I ended up having to file for disability eventually and walk away from the career I loved due to how debilitating the disease can be. I see one of the top researchers in the country at the University of Iowa, and their only answers for me have been twice monthly bladder installations, amitriptyline, hydroxyzine, and Elmiron. Their pain clinic has me take Percocet as needed, and I get SI joint and Ganglion Impar blocks every 3-6 months. I do use the Prelief religiously, and I also take Desert Harvest aloe Vera capsules. Pelvic physical therapy is a frequent recommendation, but I haven’t had good luck with it. That said, everyone responds differently to different treatments. The DH aloe vera capsules are something almost everyone agrees on though. If a flare is particularly bad and just won’t go away after 4-5 days, I’ll go on a 6 pack of prednisone. I also drink highly alkaline water and a lot of it to try to keep my urine the least acidic as possible. The migraine in your lower pelvic region is a great analogy. I always say it’s like 1000 tiny blades cutting at it.
I hope this helps a little,
Christy

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