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What is normal?

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  • What is normal?

    I am interested in knowing how many days a month would most of you consider to be good days? I notice that approx 2 weeks which includes ovulation and premenstruation are awful. The week of my period I feel pretty good, and the week after is so- so.

    Pain and burning have improved with the diet. Frequency and a very swollen feeling are my main symptoms now.Going on 3 months with elmiron. I know elmiron addresses pain, but I'm not sure about frequency....

    Also, has anyone had a bad reaction to hydroxyzine pamoate? I've had a lot of itching with my symptoms and was excited to start taking this. I took for about 2 or 3 days and had really sharp bladder pain, so I quit. I talked to my Dr and pharmacist and both thought this was not likely due to the drug, and that side effects would not likely be felt in the bladder. I restarted today because i understand this drug really helps with frequency.

    It's my birthday today and I was persuaded to go out to lunch, although I would have stayed in bed left to my own devices. I am so swollen today. I am glad i went out though. I am very fortunate to have a wonderful husband, daughter and a few good friends.

    Thanks to all for posting!

  • #2
    I would say I currently have two days a month that can be categorized as "bad." The rest range from okay, but with some pelvic pain, to almost back to normal. I do not have, nor have I ever had, many bladder symptoms. I also have endomitriosis, and the day of, and the day after my period are very painful for me; I do use Vicoden on these two days. Elavil was my "miracle" drug... I started noticing more and more good days the longer I've been on it. I have been on Elmiron the same amount of time as you. I am also on hydroxyzine and do not have any issues with it.

    I hope you had a lovely birthday.
    Symtoms started July 2010.
    Severe pelvic floor pain only.

    2 time PT graduate!
    In medical remission since August 2011; able to eat and drink anything I want currently.

    IC meds:
    200 mg Elmiron in the morning
    100 mg Elmiron @ night
    Macrobid after intercourse

    03/11 07/11 01/12
    If at first you don't succeed: 07/26/2013!


    • #3
      What is Normal

      I know that each of us is different, but I can tell you that when I decided to pursue the InterStim is when I realized every day was bad. In the beginning, I would have only 13 bad days/month (premenstrual/menstrual). Gradually, that crept up and there were no good days left. I tried various medications (although not that which you reference) and therapies and none helped with giving me more good days (pain, frequency, and urgency wise), but the Interstim trial *did* take me from 30-40 voids/day to 12. That was a major triumph, and I hope it will hold during the permanent implant although I'm going in eyes wide open and aware of the challenges.

      I think that many of us would tell you that premenstrual and menstrual pain typically involve flares and not-good days, but that *doesn't* mean that you're not hurting (badly) and that *doesn't* mean that you shouldn't pursue every therapy that works for you and that works with how you want and need to live your life.

      I wish you all the best: this disease is extraordinarily draining, I know. It does not have to be life-defining (although it often feels that way), but it can take a tremendous amount of support to help it from becoming that kind of defining disease. I have come to accept that it will never go away, even as I have come to accept that there are many, many things I can do to try and keep it from overpowering me. It has been a long road but being able to read this forum is one of the things that helps, so I thank everyone for that.

      PS Please do not read my post as an endorsement for Interstim. I very much respect that it is not for everyone and that many are very much opposed to it -- it is a choice my family and I have made while recognizing that everyone is different.


      • #4
        Glasshalffull - "but the Interstim trial *did* take me from 30-40 voids/day to 12. That was a major triumph, and I hope it will hold during the permanent implant although I'm going in eyes wide open and aware of the challenges."

        I just wanted to say those are some spectacular results and I hope the permanent implant goes well. My mom is going to be doing the trial soon though she won't research it at all and is just going ahead with it. I don't know if its her age or what but she thinks its odd that I research so much about IC and/or anything else I have and she thinks I should just trust the doctors. Maybe an old school of thought!

        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link:
        AUA 2011 Guidelines to diagnosing and treating IC overview-
        AUA 2011 Guidelines to diagnosing and treating IC PDF:
        Great treatment flowchart on page 19 of the pdf