FOR THOSE WITH INTERSTITIAL CYSTITIS

Discussion in 'Fibromyalgia Main Forum' started by kadeedidit, Apr 6, 2003.

  1. kadeedidit

    kadeedidit New Member

    I've not heard this discussed a lot or read much about it on here. I have interstitial cystitis and boy did I suffer with it. There were days I wanted to be put out of my misery......
    I've read about a lot of meds on here but not the one I take for irritable bladder.....which goes with the FM. Does anyone take Elmiron?? I was skeptical when I started it but I could not stand the burn any longer and nothing was working anymore. Had 3 bladder distentions(which is an out patient surgery), was doing my own bladder installations with DMSO, and nothing helped anymore. I started the Elmiron and it took a good 6 months but i've been pretty much pain free for almost 2 years.
    On the Elmiron it says take 3 a day but it works taking 2 a day for me. I couldn't remember the middle of the day pill..lol
    Just thought i'd share what this med has done for me....HUGGLES.......KADEE
  2. tiredTina

    tiredTina New Member

    Hi Kadee, boy it sure is nice seeing that I'm not the only one here who suffers from IC.(not that I WANT anyone to suffer as I have, but to know I'm not alone). I've been dx with IC for 2 1/2 yrs. now and I've done it all!!! I was put on about 9 different meds when I was first diagnosed. They said I was one of their worst cases they had ever had, oh lucky me! I was put on Elmiron and gained 20 lbs. in 3 mos. I wasn't seeing any results really from any of the 9 pills I was taking.(most of them 3 x's a day). Then I found out I was pregnant with my 2nd child and had to go off all meds. I did ok throughout my pegnancy, but they were expecting a full remission.(no such luck). After my son was born all the symptoms slowly crept back and went full blown again. I went back on most of the meds, and added Elmiron instillations. I did them myself after 6 weeks. They worked for about 2 days but then I was right back to being completely miserable again. I found a new urologist and he did all the tests again(cystoscopy, urodynamics, ultrasound, ect.) and found that my IC was actually in remission! He then sent me to a rheumy and was diagnosed with fibro. Both Dr's agreed that it was the fibro causing my symptoms and pain. They said if the fibro is out of control, my bladder would be totally affected because it is just one big muscle. That was Nov. 2002, and my fibro is still out of control, and my bladder is getting worse by the day. I've lost all control and pee on myself at least twice a day!! I don't really know what else to do, I'm very educated on IC, go to support group, research like mad, ect.... but I'm still learning a lot about the fibro. I'm so glad to hear that you have had such amazing results!!! It was great getting to share my story, thanks!
    Friends in fibro,
    Tina
  3. tiredTina

    tiredTina New Member

    Thanks for the tip! This may be a dumb question, but where can I get it? Is it available over the counter at the drug store? Or is it at vitamin sores? I've actually never heard of it, especially for bladder problems and I've been heavily involved with the IC support group before my son was born! I was also wondering if it would counteract with any of the meds I'm currently on? If now, I'd love to try it out!! Thanks again,
    Tina