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It will NOT always be this way!!

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  • Rubes
    replied
    Hmm - I think the elavil made the most difference for me. I stayed on it long enough to give the elmiron a chance to work (6+months), and then stopped. I was good for about 2 years and recently flared up a little. When I went back on the elavil, that did the trick again for me.

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  • sshannon74074
    replied
    Great news Rubes! What medicine do you feel has helped you the most?

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  • SuziQ64
    replied
    Wow Rube! Your post is exactly what I needed to read right now!!!! Thank you from the bottom of my heart for taking the time to post! I'm looking forward to getting my skis on and resuming my position as coach.

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  • Rubes
    started a topic It will NOT always be this way!!

    It will NOT always be this way!!

    Hi everyone!

    I posted a while ago (a long while, I believe) when I was in remission and feeling good. I was diagnosed with IC in the spring of 2009. Compared to many of the people on this board, my diagnosis came fairly quickly (and I mean within 2 months or so - sounds like a LONG time, but it's way shorter than most people). Like many of you, I thought I have a bladder infection that just would not clear up. I was referred to a urologist who insisted I did not have IC (based on his on intuition, no less), and said it was just overactive bladder. Well, the OAB meds helped minimally, and the best thing that dr did for me was to give me prosed DS. Unlike many of you, my IC is relatively mild, and comes mainly in ferocious bouts with hormonal fluctuations. Initially, it was only right before and during my period. I have a great OBGYN who referred me to a fantastic urogynecologist who believed me that it was IC. Prior to meeting him, my obgyn started me on elavil, which improved my symptoms IMMENSELY the first night.

    With the help of Elavil, Elmiron and Prosed DS, I achieved significant relief and after 6 months, stopped taking the elavil since I'd had no flares since starting it. I wanted to see if the elmiron had had time to work without the elavil. Sure enough, I was great (I mean, NO issues at all) for 2 years.

    Fast forward to this summer... I suffered my 6th miscarriage in a row, and for some reason, my periods came back regularly for 2 months, and then went all wonky. Right then, my bladder went crazy. I flashed back to the panic, anxiety and fear I'd felt 2 years earlier. I hated being on the elavil since it made me gain a little weight (about 5-10 lbs) which I could not get off. Of course, my doctors said that 25 mgs was to little to do that, but as soon as I went off of it, was able to lose the weight. I decided that feeling better was more important than maintaining my weight where it was, so I went back on it. Again, I got immediate relief. I'm happy to report that after 3 weeks, I've actually lost about 5 pounds, but I attribute this to being much more active this time than I was last time (I'm an avid runner), and being extremely careful about food so as not to aggravate my bladder.

    I say all of this because I remember vividly the fear and anxiety that I felt when I realized I had IC and that there was no cure. There is no cure for migraines or colitis, both of which I also have, but I can manage them very well with medicine and lifestyle changes. For whatever reason, I wasn't thinking of IC in those terms. All I could think was "I'm going to have to live the rest of my life in this much pain." It is true that there is no cure, but there ARE great treatments that can give you your life back. Just remember, the people that feel great aren't thinking about their bladders, and have no reason to come here for support. The majority of people on this board are the ones who are in the worst shape, and needing support the most. I'm not saying that to detract from the people on this forum. I was one for a while, and this board helped me SO much. For the 2 years I felt great, it didn't even occur to me to come back here. There are a lot of people living with IC, having a great life.

    As I said earlier, I am a runner. While my symptoms are really bad, running isn't really an option, but after a week or so of getting back on the meds and getting my symptoms under control, I was back out there. In fact, this past weekend, I was in a 200 mile overnight relay race. It was 30+ hours of living in a van, taking my turn to run my shifts. Sounds like an IC'ers nightmare, right? Well, I'm here to tell you, you CAN get your life back. I was popping prosed and guzzling water, but I made it through. Please don't give up hope, and don't be scared to try treatments. All medicines have side effects, but just because they are bad for some people doesn't mean they will affect you the same way.

    Keep your head up and your hope alive!!

    Rubes
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