Just diagnosed with Bladder Pain Syndrome / Interstitial Cystitis

Posted by lucy155 @lucy155, Jan 25, 2023

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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@joybringer1

All I can offer to all of you is sympathy for your frequent UTIs. A friend of mine suffers these and I have had some in the past. They are rotten! As for interstitial cystitis, my mother suffered from this for many years. She had 20 laser surgeries for removal of lesions in her bladder. I found the name of a drug for her in our local newspaper and she showed the article to her doctor and he said they would try that and see how that helped. It did help her. The drug was Elmiron. I hope this is of some help to those who suffer from this terrible problem. With all good wishes, @joybringer1

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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

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@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.

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