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Just diagnosed with Bladder Pain Syndrome / Interstitial Cystitis
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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Why did your Mom have so many surgeries on her bladder. What were the lesions from.
So sorry your Mom went through this.
My father passed away from bladder cancer 6 years ago. He had 7 scraping procedures of his bladder, One huge surgery to remove a tumor, 6 months of chemo and 6 months of radiation. He also suffered with radiation cystitis.
Not sure why the medical community can not find better, less painful treatments for bladder problems of all kinds. Too many people are suffering.
Sending heartfelt prayers to you and your Mom.
Take care
Colleen P
@collenp, Mother had laser surgeries to remove the lesions and the doctor never mentioned cancer. Mother died nine years ago. Her heart was the problem that killed her. With all good wishes, @joybringer1.
Update 1/2025: I had old embedded vaginal "sutures" removed this past July that were causing vaginal bleeding. The pathology report indicated "blue, frayed braided mesh" as the description of the material partially removed by my urogynocologist. My decade of infections, colon abscess, and urinary retention was most likely caused by mesh used in 1995 to suspend my bladder. The mesh has disentigrated and fragments have moved throughout my pelvic floor.... my experiences are well documented outcomes of failed pelvic floor mesh. I have found an international 11,000 member support group for mesh victims. Investigate thoroughly before you allow mesh to be used in hernia or pelvic floor prolapse repairs!
Did you ever fi d a solution to your bladder problems? I have ic and diet helps along with regular outpatient treatments of Hydro distension with clorpaction, performed by my urologist. It is a lifesaver. I also do not eat nuts, spicy foods or citrus, or tomato products, well i try not to. Lol. I also limit caffeine . All this really makes a big difference in my pain and quality of life.
Was constantly told I have Bladder Pain Syndrome / Intercystal pain for 20 years.
Was being treated with lots of antibiotics until eventually they stopped working.
Was being treated with bladder hydrodistention under full anesthesia, didn't work
Was given antibiotics before and after sex, didn't work
Was given Elmiron Pentosan polysulfate, did nothing
Was given bladder installations, didn't work
Until the day I had severe bladder infection with blood and was under 14 days of IV Levofloxacin + Ornidazole
After that treatment I forgot I had panful bladder for the past 20 years at all and lived like normal people.
Here was the answer, it was just highly resistant bacteria that wouldn't respond to the standard oral protocol treatments that lived in the bladder epithelium and wouldn't be picked up by the standard PCR test due to lower amount quantity (the labs are measuring the bacteria that are > 10^5) :
https://pmc.ncbi.nlm.nih.gov/articles/PMC1476055/
Until 3 years later I had sex and 1 week later all my symptoms came back.
So now I am going to be treated with Meropenem and no sex for me until the vaccine: