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Interstitial Cystitis: Anyone have symptom relief tips?

Posted by januaryjane @januaryjane, May 6, 2020

Ive been diagnosed with IC for awhile and am on Elmiron. It has been helping pretty well. The past few days Ive had a bad flare. I try not to take advil/ibuprofen. Any others out there with IC that have symptom relief tips? Im staying away from the 4 Cs, and other irritants in food, drink. (The 4 Cs being caffeine, carbonated, citrus, vit. C.)

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Ishki54 | @jbaird58 | 5 hours ago
In reply to @blessedgramma "Four months ago what I thought was chronic UTIs turned out to be the dreaded IC/CBPS...." + (show)
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Four months ago what I thought was chronic UTIs turned out to be the dreaded IC/CBPS. Though I have Mayo PCP, Mayo will not refer to Urology, only taking special cases. Saw a couple general Urologists who said scope 'looked fine', do PT and check back in in 2-3 months. I am doing Pelvic floor PT and scrambling to find what works, what triggers. I can't tell you how frustrating this is... feel like I'm battling it alone, just me and Chat GPT and my husband who is growing tired of it all... keeps talking about the anxiety piece. Easy for him to say! I understand PT takes up to 12 weeks to see results. I am staying away from all the no-no's (not after learning the hard way with a glass of red wine, sending me into a tailspin for a week.) I still have occurances of pain and frequent urination that keeps me up often at night, as well as not feeling myself during waking hours. I just want to feel NORMAL again. Chat GPT has me taking Cystoprotek which has Quercetin to repair bladder lining. Anyone heard of this?? For me, only tylenol takes the edge off- ibuprophen does nothing. Verdict is still out on anihistamine. Then ice, not heat. Is it originating from sacral area/nerve pain? Is it the GAG layer? Is it just a pelvic floor issue? And how does one know?? I feel desperate. Any suggestions that worked for you, I welcome.

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@blessedgramma
I know how you feel. I take Elmiron and have my eyes checked every 6 months. So far no problem with eyes. I have flare ups that can last 2-3 months to heal. I watch my diet but wasn’t able to drink enough water for a couple of days and it hit hard! It felt like I was urinating razor blades! I’m still healing after a couple of months. One day better the next not. I am so tired of this. I take d-mannos
and have had PT for pelvic floor but no help. Have recurrent UTI. It’s hard to tell if it is the BPS or UTI anymore. Cultures come back showing no bacteria even though initial test shows multiple bacteria none specific. I don’t understand that. But it is the IC flare up. I am out of solutions. The bad flare ups make me feel just as bad as if I had a UTI and not just pain in that area but my whole body feels sick. Just letting you know you are not alone. Wish they were doing more research in this problem.

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