Replied by Duck Lucky (Monroe, Maine, Usa) on 07/24/2012
You are not alone. There are many sites for support, the Interstitial Cystitis Association and the Intersitial Cystitis Network are probably the most understandable. Print out some stuff for your family to read, and also hand them to your doctors. This is a real disease and if any doctor poo-poos you, walk away. Diet is essential, you will find a good road map on the ICNetwork. Elmiron can take up to six months to work (nobody really knows why, but it works for "some") so if you can tolerate it, stick with it for a while. If after 6 months you have no relief, personally I would quit and try other things. The only problem with trying other things while taking Elmiron is that you don't know WHAT is working. But people go off and on it all the time. A good clean diet is very important. And if you are having a lot of pain, find a doctor who will help you with that. Most uros will not prescribe pain meds. There are many, many treatments that work, it is hit and miss as one thing does not work for the next. It will be a long journey, but there is a lot of support out there. You are on a typical treatment plan that most start out with. And yeah, maybe the naturopathic doc was on the right track after all, altho most of the "regular" docs will probably snicker. You will find lots of ways around missing all the junk you've been eating. And try unsweetened almond milk if it's milk you are craving. Baby apple juice is okay for some. Just always read labels, any additives like citric acid can irritate. You will find you need more time in the grocery store, but sure out there you have health food stores, and sometimes you can find someone knowledgeable who can help you there. Try to stay alkaline rather than acidic (much info on net, just google it). Good luck to you, and don't despair. You may be really fortunate and find one thing that does the trick. Think of it as a challenge and not a problem. After all, problems have solutions.
