Looking for support and advice on living with Interstitial Cystitis

Also no treatments have helped me and I’ve had ic for 30 yrs. Please let me know if I can help in anyway. I like helping icers since that’s about all I can do. Not medical advice

Nortriptyline made a HUGE difference for me and my IC pain. Now I can’t be without it. Also if you’re desperate the IC diet does help, but it is very restrictive so I found it hard to stick with.

I bought & used the cookbook for ic until I learned what works for me.

Heating pad, diet and meds. The heating pad helps the spasms but the other two did nothing for me.I’ve had ic since I was 18 and now I’m 54.

Aloe Vera supplements are better and safer than Elmiron.

I started with 1 year of elmiron (a controversial drug choice now, but it helped). The ICN list helped guide me but I was never able to commit to the elimination diet process. Instead, I made note of what foods were irritants and to what extent. I found that I can eat most things in small portions as long as I don't eat multiple irritating foods often or in close succession. When we plan meals, we make sure recipes with my irritants are at least a day or two apart. I'm weary about this around my period especially. We're trying some substitutes for irritants - ex: soy and fish sauce - in recipes but I don't have a lot of feedback from this yet. I also increased my water and try to avoid soda. Also, taking frequent restroom breaks instead of waiting until I urgently need to pee helps. Making sure I don't wear pants that are too tight and that I'm not sitting for long periods without a break. Finally, when I have a bad flare up, I know my safe foods and stick to them. Hope that helps!

ICN diet to start ! Then slowly Re introduce foods on the try it list

Also I eat an anti inflammatory ( AIP) low oxlate diet

Hi I have this as well, D mannose had helped my IC alot, increasing my water intake has helped also

🙏 💕 😥