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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Yes. I have this problem of interstitial cystitis also. It’s just so debilitating when it hits. Was diagnosed 2 yrs ago by a gynocologist after getting nowhere with my doctor. I just treat it myself when I get an attack, using over the counter painkillers. I get it probably twice a year and it can last for up to 3 months.! Lots of things set it off. Stress the worst . I have been told there is no cure 🫤

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Hello. I’ve had interstitial cystitis for years. I was taking Elmiron but gave that up to some scary reports I saw. I have found that drinking a lot of water, taking d-manosse and heat on the lower abdominal/pelvic area helps a lot. Stress definitely can bring on the pain. It’s such a painful thing to have to deal with. I wish you well/quick recoveries.

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I’ve had so many UTI’s over the past 3 years I can’t count. But due to my many allergies to antibiotics I have to be hospitalized and on a antibiotic that can only be administered by IV for 5 days. Finally got into a Urologist
and he wants to look at my bladder. He thinks I have cramping due to bladder spasms. Tired of cramping all the time and I hope he can help me

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Profile picture for marlymac12345 @marlymac12345

Hello. I’ve had interstitial cystitis for years. I was taking Elmiron but gave that up to some scary reports I saw. I have found that drinking a lot of water, taking d-manosse and heat on the lower abdominal/pelvic area helps a lot. Stress definitely can bring on the pain. It’s such a painful thing to have to deal with. I wish you well/quick recoveries.

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@marlymac12345
Thank you. D- mannose is one I drink sometimes but I actually have found that a ginger / lemon infusion is great. I like it , so I drink many mugs of it! Seems to help. Good luck! ☺️

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Profile picture for kcidram1957 @kcidram1957

I’ve had so many UTI’s over the past 3 years I can’t count. But due to my many allergies to antibiotics I have to be hospitalized and on a antibiotic that can only be administered by IV for 5 days. Finally got into a Urologist
and he wants to look at my bladder. He thinks I have cramping due to bladder spasms. Tired of cramping all the time and I hope he can help me

Jump to this post

@kcidram1957
I think that urologist is right. The pain with interstitial cystitis sounds like yours. The pain spasms are so nasty. I took the Elmiron until I found out there are class action law suits, due to the possibility that it causes some eye issues. I now use d-manosse, heat and drink a lot of water and a mild herbal tea. Good luck with your urologist.

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