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Flare goes away with my period?

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  • Flare goes away with my period?

    I've noticed over the past couple of months that my flare dies down and I feel better when I'm on my period. Is this just a coincidence? Also I notice that any kind of physical activity that involves lifting and doing ab work has thrown me into a flare so I don't know if this is worth mentioning to my dr or not. I am supposed to get another instill on Thursday but am worried it will cause me to flare up again when I'm actually feeling a bit better now. This condition is so confusing! Also I tried the IC diet and the only definite connection I can make is diet soda. I'm even drinking espresso and am doing okay with that. I've been off the diet officially for almost a week now and feel better then I did when I was on it. I don't know what to think. Charisse
    The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
    First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
    Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
    Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
    Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
    BABY GIRL 10/28/08 *** BABY BOY 7/8/11

  • #2

    initially i thought my bladder was better w/ period.
    but its definatley worse w/ tampons

    i think its a coincidence though
    Quit ELMIRON due to hair loss
    Cystoprotek ROCKS!

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    Current Meds:
    AM Cystoprotek & ATARAX 50mg
    PM Elavil 25mg


    • #3
      I always feel better when I'm on my period. I actually look forward to it-kinda. That was when I was on the pill though-this is my first month without it so we'll see what happens now.
      I can't use tampons either. I get really sick within 5mins of using one.


      • #4
        A lot of people have ic that gets either better or worse during their period. The theory is that our ic could be somehow influenced by our hormones.'s not so wierd.


        • #5
          I agree with Robin, a lot of people see a change in their IC when they get their period. I am on continous birth control because when I get my period I flare. I actually got my period last month because I stopped the pills to get one, worst flare I have had in a long time. Ouch! I guess some people could feel better during their periods as well.

          I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
          1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
          2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
          I have tried every oral medication as well as rescue instills and DMSO.

          I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

          Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
          Also proud mom to the best Bullmastiff on earth, Claus