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Interstitial Cystitis: Anyone have symptom relief tips?
Kidney & Bladder | Last Active: Mar 7 11:50am | Replies (32)Comment receiving replies
I've had IC since the late 1980's when it frequently took several years to be diagnosed (1994 for me, which delayed treatment). Elmiron can be very helpful for those of you more newly diagnosed, (not as much for those of us who've had it so long). I don't want to sound negative because it is found more quickly now, treatment can be started earlier, and more is known about it. I had to go on medical disability because of the pain in 2006. I tried all the available treatments, at that time, which included DMSO and other bladder instillations, some now-outdated methods (including Silver Nitrate via catheter- barbaric), numerous other therapies, and then, Methadone for 14 yrs. (which seemed to help me the most). We're not all the same so, experiment with diet, baking soda dissolved in water, Tums, (both to decrease acidity), a warm compress, acupuncture, meds, Aloe Vera, hydro-distentions, and anything else your Dr. recommends. I strongly encourage anyone with chronic bladder pain to see one of the top 10 Drs. who specialize in IC in the country, and to join the ICA for resources and supportive help. After age 70, I was told the pain usually decreased and I have, thankfully, found this to be the case. God bless and never give up hope.
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Your comments offered suggestions I haven’t used thus far in an approx 10 year battle with IC. Until recently, my flares were 3-4 times yearly, lasting a week or so each time with severe abdominal pain, urgency, pressure and burning. Currently, I get bladder installations every 6 weeks or so, usually with good success. Since my last installation on 01/11/2024, I’ve had three flares that I treated with Pyridium and Advil. Third flare yesterday sent me to urgent care because the pressure occurred very quickly along with a bit of blood. This flare was diagnosed via urine specimen as a UTI. I had just one UTI in the past, more than 5 years ago.
I am very physically active in gym cardio, weight lifting, power walking, yoga and Pilates. I am convinced these help, particularly those exercises that work the pelvic floor. I am seeking referral from my PC to a pelvic physical therapist. This PT mode REALLY helped three years ago and virtually eliminated flares for quite awhile.
I am going to follow your suggestions and join the ICA and look for an IC specialist in Michigan. I was evaluated by a PA in a pelvic specialty practice and was told at the time My symptoms did not match IC and was referred for PT before seeing the doctor.
Trying to stay positive and I hope you remain the same. Thank you!