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  • recently diagnosed

    I've been reading your posts for the last 3 months and am ready to share my story. I was diagnosed few months ago and am still feeling my way through all this...My initial symptoms were terrible itching and burning with urination and semi-frequent urination. Actually I've always urinated often.

    Was referred to a URO who did the usual tests; everything coming back normal. the cysto showed extreme inflammation. He put me on vesicare and urelle. i starting reading about IC and believed that this was it. i actually asked him to put me in on elmiron and I've been taking this for 2 months now.

    The first few weeks are somewhat of a blur. i worked and spent the rest of my time on a heating bad. I also started the IC diet and after a month noticed the
    burning and itching had greatly improved. I was a diet coke addict and gave it and coffee up entirely.

    I started feeling more normal a few weeks ago. I have started shopping again on the weekends and just saw a movie which I hadn't been able to do for some time. A week ago I had almost a full week of feeling good. I was very encouraged. Then came ovulation a few days ago and I have been in flare ever since. I also feel really good during my period which hopefully means menopause may be good for my UC. (I'm 50 and still having periods every 28 days)

    My symptoms are always worse in the morning. I have frequency until I leave for work. Once I sit in the car, my frequency improves. Once I'm at work I urinate every 1-2 1/2 hours. Sitting is hard on me. but I bought a couple of the bladder pillows which have helped. I have some degree of pain at the end of each urination. I guess I'm getting used to this but I'm really hoping that the elmiron will help with the pain.

    I usually wake once or twice at night. many nights i can go back to sleep, but when i'm flaring the nightly urination starts a cycle of frequency and I'm up for 2 or 3 hours.

    I have a very demanding job which I love. I am optimistic by nature and thought I would be okay before this flare I'm currently in. I am swollen and even walking is painful at times. I had stinging bladder pains the other night which were something i hadn't experienced before. I thought I had an allergic reaction to the generic visteril capsule I just started so i stopped and went back to my generic zyrtec. I understand that this is very rare so I will probably start it again maybe just in the morning until I know it's not irritating me. i still have some itching, and when I'm flaring i feel itchy all over, so I think the vistaril could be helpful.

    If i can get out of this flare, I will get back to being optimistic again. i guess my fear is that my symptoms will worsen instead of improve, although I am still following the diet drinking lots of water (for the first time in my life) and taking my medine. I understand elmiron can start to help at 3 months so I'm keeping my fingers crossed.

    Does anyone else have long lasting flares around ovulation? I remembered reading that these type of flares didn't normally last more than a day.

    Thanks to everyone who posts. I have learned a lot on this site. I hope 2011 is a good year for all of us.

  • #2
    Welcome to the ICN SherriB!

    I used to flare for a good week straight around ovulation, but after diagnosis and treatment that became less & less of an issue for me. I don't know if it's simply because my IC symptoms had continued to improve or if it's because I'm inching closer to menopause.

    It's good the diet is helping you. I know that one change made a huge difference for me. I'm thinking that since you've managed to work your way towards feeling better perhaps this is just one of those two steps forward/ one step back type of thing. I know on my way to getting better I had a few backslide flares that made me worry it was going to go back to being bad again.

    I'll keep my fingers crossed for you!
    Vicki
    "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

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    • #3
      to the IC Network.

      If your flare doesn't go away very quickly, I think it would be a good idea to be checked to be sure you don't have an infection. It's not always easy to tell the difference between flare and infection. Elmiron can take up to six months or more to make a real difference, but some do feel better after only a few weeks. I hope you'll be in the latter group.

      Sending well wishes your way,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

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