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Need feedback. Almost two months in a flare

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  • Need feedback. Almost two months in a flare

    Hi. This is my very first post and I would really appreciate any feedback from those of you who've had the licocaine, heparin installations. I was diagnosed with IC in 1999 after having terrible pain on and off (mostly on) for the better part of a year. My Uro put me on Elmiron, Oxitrol Patch, and Amitryptilene and it has kept me feeling almost normal most of the time. I've only had six or seven flare ups and they've never lasted more than one to three weeks before finally subsiding. The flare up I'm in now started in late January after my Gynecologist suggested I try going to a lower dosage of Estridiol. I've been on this dose for a very long time as I had a hysterectomy in 2001 and I've been fine on it. I wish I'd never listened to her because she suggested I gradually lower and see how I do. I asked how to safely do that and she said to go from taking 1.5 mg. every day to taking it every other day. Well, never dreamed it would bring on a flare but it did. A friend of mine asked me if I realized that this had cut my dosage in half just like that? Well, I do now! My Uro thinks that's what happened too because nothing else had changed other than that. And I had been fine for a long time. As soon as I started feeling a flare coming on I started trying to figure it out. By that time I had been doing the lower dosage for two weeks. I immediately went back to taking the original dosage when it hit me that that's what probably triggered the flare. That was a month ago and I'm still in the middle of this horrible flare. I'm really at my wits end because I've cut my diet down to eggs, bread, Trader Joe Cheerios, rice milk, unseasoned baked chicken and baked potatoes. My uro started me on the bladder installation a few weeks ago but I can't put together more than two or three days at the most without relapsing into the full blown pain, urgency, and frequency. He says it usually takes four to six installations before you get a long lasting effect and it has to be every week. At first I was skipping a week inbetween thinking it would be enough because my other flare ups have always cleared up within three weeks or so at the most. My first instalation gave five days of no pain but came back with a vengence because I thought it was over and started eating normally again. The last two haven't given me any relief at all but he says I need to keep doing it at least three more times and once a week for sure.

    I'm getting so discouraged and worried that the flare is not going to end. I'm losing weigth and can't seem to find anything to eat that I don't react badly to. If any of you have had successful bladder installations, I would really appreciate hearing about it!! Also, I don't know what to eat. I've tried things on the IC friendly list like cooked zucchini, corn and the other things I've mentioned and I just keep getting the bad pain back. I can't figure out what is triggering or keeping this flare going. It's not my pattern so I'm very concerned

    Your feedback, encouragement and suggestions are welcome. Thanks so much!