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Has anyone been diagnosed with interstitial cystitis? I suspect that is my issue but the doc I saw had no clue. I'd be interested in hearing your experience.
I have interstitial cystitis but the last flare I had was in 2013. I saw a urologist. There was no indication of infection and I had tests including a scraping done. He and my rheumatologist said the same thing in that it was very well lupus. There was a medication I tried- sorry, can't remember the name- and a special diet I followed. I also took/take an otc drug (AZOS) if burning. It is like pyridium that is a dye that soothes. That usually helps. The diet helped. It does sound crazy but you have to avoid cranberry juice and many fresh fruits and vegetables. I can check to see what the medication was. I remember it did have weird side effects, particularly long term usage.
@A MyLupusTeam Member I read what @A MyLupusTeam Member wrote and wanted to say that the absence of an infection that does not respond to antibiotics is one big heads-up that the problem could be interstitial cystic Chronic Bladder Pain. If your doctor seems to be at a loss, see a urologist. There are also other meds that help the syndrome, like Zoloft - which I have taken for years as fibromyalgia aid, and possibly a relaxant. One big help is to cut out caffeine. Good luck!🙏
@A MyLupusTeam Member Hi- I am back! The medication I took was "elmiron". In the 1990's like I said, I was diagnosed with interstitial cystitis and go through meds, including medications put into the bladder. Unfortunately, they never worked and I would go into the hospital and have the cauterization. This would work for a year or so and then I would have to repeat the procedure. I did not have issues again until 2012, I think. After a trip to the ER, I was referred to a urologist and got lucky! He was really great! I was on elmiron for awhile, but it causes hair loss, and I had other problems with it. I did do the diet. It is the same one on urologyhealth.org.
The site also talks about "pentosan polysorbate." -- the same as Elmiron. Anyway--- that link is listed, but you probably know about this. And, it is called BPS (Bladder Pain Syndrome). I had several surgeries in my 20's and eventually a hysterectomy. The urologist said there was no cure, and this would be the closest I got. Hope this helps. It is my understanding that Elmiron is the only drug approved for this type of cystitis.
Hope you are having a better day!
@A MyLupusTeam Member
This diet was for Chronic Pelvin Pain-- the urologist in INDY told me that CPP is the global term they use now and that "interstitial cystitis" isn't used anymore. In the 1990's I often had to go in the hospital and they scraped the bladder walls. The diet does wipe out all fruit with seeds, almost all juice. I have to look for the paperwork for you. I am lucky in that I seldom have this anymore. Good luck with it!
Thanks @A MyLupusTeam Member. I would be interested in knowing the diet you followed. I read some on line and I really struggle with the thought of reducing some fruits and veggies.
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