Anyone else have interstitial cystitis?!
Question: What's been the worst part of it for you, and what do you do to help it?
I have severe pain when I pee, have intercourse, walk a lot, drink anything other than water.... It's been this way for about 3 years now. My doc suggested I take Azo everyday to get rid of the pain.
Answers: What's been the worst part of it for you, and what do you do to help it?
I have severe pain when I pee, have intercourse, walk a lot, drink anything other than water.... It's been this way for about 3 years now. My doc suggested I take Azo everyday to get rid of the pain.
I have had it a little over two years, and the worst part for me has always been the urgency. My primary trigger now is preservatives in food (can have jalape?os but potassium sorbate kills me--go figure). Have you been taking any medications in the last three years? I started Elmiron right away and it has helped a great deal. It just takes a long time, and you have to be really good about not taking it with food. The sooner you start getting that bladder healed, the better off you will be long-term.
I assume you know about the IC diet. You are probably sick of it, but try being strict on it for a while; no risk-taking. If you do that while taking something like Elmiron or concentrated aloe pills, you may be get some healing done and be able to loosen up a little bit with your diet. But you need to do this as soon as possible to get the constant flares under control.
It sounds like your doctor needs to be a little more proactive about your pain management. The three main food triggers are: acid, nerve stimulants (caffeine and MSG are big ones), and histamines/tyramines. These can all produce flares, but you need different things to calm different kinds of flares down. I use Tums/prelief for acid, tramadol for nerve flares, and Atarax for bad flares and histamine reactions. I don't know much about Azo, but those are for UTIs and I'm not sure that's the best choice...really that's like asprin for war injury. It won't do much for the kind of flares you've been having.
Enabelex may help with the muscle spasms and has fewer side effects than other drugs often prescibed, like Ditropan. As for the Elmiron, if you don't want to do that, you might try aloe pills. It has to be high-quality aloe, such as the kind made by Desert Harvest. They actually did a study of several hundred people on it and it did help most people in the study (75%). Unfortunately it is not really much cheaper than the cash price of Elmiron, but is certainly worth a try.
Hope this helps!