Sadly there aren't that many people who visit this group. I believe I have a mild case of IC compared to many of the posts I've read. Because of that I have not received a formal diagnosis from the urologist or the ob/gyn. I've had every test in the book and I come out normal, yet the problem was there for about 7 months before it went away. Then, about 3-4 months later it returned [and that's when I deduced it was IC]. Then another two months later it went away.

I thought long and hard about what was different; what might have triggered this. Confounding all this is all the drugs I take for multiple autoimmune diseases. In my case, it appears that when I came down with an UTI last year, I went off Torsemide [similar to Lasix]. I did that because I was urinating so frequently I didn't feel I needed a pill to help make me urinate all the more. At the same time, I went off Tramadol [for my RA] because I didn't seem to need it.

I can correlate the pattern with these two drugs. When I make sure to take the Torsemide and Tramadol, I don't exhibit symptoms of IC. When I go off them, the IC symptoms come back.

Some think an acid-free diet helps. I didn't try that so I can't address that treatment.

Good luck.

First of all you are on the right path. At first you really need to stick to the ic diet. Second it takes a while for your bladder to start healing. I'm talking months. Here is what I take for ic. I have been on the regiment for over 10 years. I take freeze dried aloe from Desert Harvest (only try this brand as they take out the part that makes it a laxative), I take cystoprotek from Algonot (helps support and rebuild the gag layer of the bladder, also blocks mast cells which cause inflammation). I take a lot of antihistamines. I take claratin and benadryl before I go to bed. Zyrtec also works very well for people. I found that antihistamines help me a lot and I notice the difference very quickly. I take ditropan xl for urgency and frequency. It helps control bladder spasms. Some people do well on Elmiron which is the only drug RX specifically for IC. I tried it for 8 months and it did nothing. My doctor then suggested the cystoprotek which works in a similar way but is herbal, not RX and that combined with the aloe helped. It took me about 6-8 months to notice improvements. The other thing is to make sure you relax your pelvic floor. Do not strain when trying to pee and if you're doing any type of kegels STOP. I do stretches to help relax the pelvic floor (child's pose is a good one). It's good that you stopped the vitamin c as that can be very irritating to the bladder. Keep a good journal and rate how you feel after eating. It took me a while to find my trigger foods because I was flaring all the time. My biggest triggers are tomato sauce and chocolate. Other meds you could try is elavil, it's an antidepressant but it helps with nerve pain and makes you sleepy. I would at least try the aloe from desert harvest. It helps a lot of people and can be taken with other drugs. Take that with either elmiron or cystoprotek. Obviously talk with your doctor about what you'd like to try before trying it. Good luck!

I just wanted to add if you're having a lot of pelvic pain that could be from pelvic floor dysfunction. It can be very painful.

Thank you to both of you. I have been going to therapy for pelvic floor dysfunction which will hopefully start helping. When you eat something that causes you to flare up, how soon with the flare up occur from that food? For example, if I ate something at lunch yesterday that irritated my bladder when would I start noticing the flare up?

I think with many people it happens within an hour or two of eating the offending food. For me it's the next day. I'll eat something and then the next day suddenly my bladder goes crazy and I have to think back to what I had eaten and usually I can pinpoint what was out of my normal routine food wise and what might have flared me.

I have a friend with IC and she swears by an acid neutralizer called "Prelief." You take it before eating or drinking anything acidic. It neutralizes the acid.

I've never tried it.

As for interstitial cystitis, you need to pay attention to your diet control. Sweeteners, coffee and tea, fruit juice and vitamin are not allowed to take. What's more, smoking and alcohol must be strictly avoided in case that will lead the disease becomes worse. However, you could take more vegetables and fruits, honey, homemade cakes, maple syrup and pear juice. Or taking herbal medicine like Diuretic and Anti-inflammatory Pill. http://www.99eyao.com/english/p/p278.htm

I would avoid any acidic fruits or juices, too.

Hi Lynn fancy meeting you here. Well I have had bladder issues forever (20+yrs) it comes and goes. Last yr. the specialist I saw said I had IC and showed me a hunnan ulcer on my ultrasound about 15months later I had a scope and I saw it with my own eyes and the lining looked pretty healthy except for the some ripples that the doctor said is from straining when I urinate. Things got better for a bit but when my RA started to flare this last time it's been down hill ever since. I wonder if that causes irritation to the bladder lining. I take OTC phenazopyridine and it helps. It's like as soon as more than 20 to 30 cc of urine get in my bladder it becomes extremely painful I feel like I have to pee but there's not much there. When I take the pyridium I get some relief. I increased my water intake and decreased my caffiene intake as I can't stop the coffee completely. But it's like when my arthritis is worse so is my bladder, I mentioned that to my urologist and he said he doesn't think there's any correlation but I sure feel like there is. I have kidney stones too. I am a mess lol. Sorry guys I didn't mean to take over.

Hi, Happychat, it's a small world!

I don't mean to hijack this thread, but I'd like to address IC with respect to any inflammatory disease. I've been thinking that when systemic [whole body] inflammation occurs, the organs need to reposition themselves...and since gravity rules, the bladder and urinary tract organs get squashed [I'm keeping it simple]. So if that's the case, then I see a relationship between IC and Rheumatoid Arthritis or any other disease that causes inflammation.

In another thread I mentioned that it's ironic that when I take my Torsemide [Rx diuretic] every other day [prescribed for another medical issue] that it flushes the edema..........which coincidentally gives the urinary tract organs more "room."

Am I crazy?

Oh yes, about the pelvic floor pain: mine was barely noticeable. I think it's because I take NSAIDS twice daily for the RA, so that was probably masking any pain.

BTW - I had every urological test run and they could never find any evidence of IC. But since I come from the "if it looks like a duck, quacks like a duck....." school, I'm pretty sure I have a mild case of IC.

When I started out I had a pretty severe case of IC and I tried the IC diet and Prelief with little change :/ I know a lot of people have had more success on it than I did! I think depending on how inflamed your body is it can take the diet longer to work. I honestly never had enough benefit from the IC diet alone and eat pretty much grain-free/paleo, in addition to avoiding my IC "trigger foods" and most fruit. It sounds like some hippie overkill diet I KNOW but I flare pretty rarely now and can almost always tie it back to cheating on some food or other. Even that diet probably took me 4-6 months to notice a difference though and about a year to REALLY feel 99% on. What got me through the first several months was actually a lot of Physical Therapy (It's not what it sounds like!! You don't get an excercise sheet of crunches or anything ... its more like targeted massage) it significantly improved my flares. I also tried a bunch of other alternative therapies and think honestly different ones helped me different times. I'm three years out from my diagnosis though and light-years better from where I started!! Hang in there!!