Intersitial Cystitis - a cure!

This is less of a question than a wish to share an experience. I "cured" myself of intersitial cystitis by following the IC diet from ic-network.com. It's a list of food and drink to be excluded. I started by excluding them all but within a year I found I could have everythiing except tea and coffee. Caffeine and Tannin are the main irritants for me. I am symptom free. No pain. No urgency. No getting up in the night and all this without drugs or surgery. I had IC diagnosed in an unpleasant test involving a camera but it was worth it because once I had a name, I googled it, which led to the cure. The GP had never heard of it and the Urologist was cautious in suggesting it would help but it completely did for me. I am mentioning it here because IC is an auto-immune condition.

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  • Thank you for this! You might have just solved a problem that was starting to become significant to me. I just started having symptoms about 3 weeks ago and my urine tests have come back mixed. How did your symptoms start? I also have been experiencing severe heartburn which started at the same time. I am going to start the diet immediately!

  • I never tested positive for an infection but they did used to find minute traces of blood. When I was at home or at work I didn't take too much notice of the frequency but there were two holidays abroad which were spoiled by having to find a loo all the time. Looking back I can see that because I was on holiday I had time for 2 or 3 cups of coffee at breakfast. The pain like a kick in the lower abdomen only came later. As you've only just started having symptoms it should be easier to cure. I wish you all the best with it. I think if it's going to work, you will see results in a week. I don't know anything about heartburn but it would be a bonus if the IC diet helped with this too.

  • Hi Molly, i've had IC for 14 years now. I have it very badly. I do follow the low acidic diet and only drink still mineral water. I do believe there is an awful lot you can do to help yourself. I take 600mcg of cimetidine a day plus hydroxyzine 25mcg in the evening. There is so much ignorance about this disease by the medical profession. There isn't a cure, IC can go into remission and then creep back up again. I found B12 has helped enourmously. I am so much better than i was. I used to be suicidal with pain and frequency. I used to take a pillow and try and sleep on the loo. The important thing is not to deviate from what is helping. There are still triggers for me, sex,stress, flavourings, fruit. PM me anytime, i'm pretty knowledgable now! Hugs. Xxx

  • Goodness, that's a lot to cope with. I was being flippant when I talked about a cure. It's great that you've found what works.

  • The COB Foundation Forum is very good for knowledge and support.

    I had a bladder stretch 7 years ago to break up the scar tissue, it helped a lot with pain and frequency, i still have my moments though! Don't take risks with what you eat and drink. I had years of just water which is so boring, red bush tea is very good, no acid or caffeine. i even filter my water for cooking. It all helps. XX

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