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Does... it... ever.. end?

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  • Does... it... ever.. end?

    Usually when I join a group I have a nice smiley happy go lucky generic introduction.

    How about a real one?

    I am Tiffany. I am 41 and have the pelvic floor of an 80 yr old. I have 4 children and have been married 19 years. I homeschool, run my house, fix my cars, pay the bills... and suffer. I have had IBS my whole life. I have had period issues for 30 years. I am gluten free to help aid my bowel in not kicking my butt everyday due to gluten sensitivities. (get it? bowel kickin my butt? haha...bowel humor) I also have pelvic floor prolapse. I knew about the Rectocele a few years back. I noticed the Vault prolapse long before that but was pretty much blown off. Now I have a cystocele and uterine prolapse to complete the picture. Anyway... I am scheduled for a total hysterectomy and prolapse repair and in the preop testing... learned I have IC. This pain.. that pain... I thought it was this or that.. never realized it was my bladder. I thought everyone peed on themselves, wore pads everyday, went potty umpteen times and woke up in the night to go.

    So anyway, sigh, I did that potassium test and I thought I would die it was so uncomfortable. It burned and stung and made me shake and sweat. Never want to do that again! Then I went for the UroDynamic testing and that was even WORSE. Between the spasms and the inability to hold it, I was so embarassed I just sat there and cried with all these tubes and electrodes or what ever it was.

    So now I have to deal with ANOTHER elimination diet to figure what triggers are. My main complaint right now is urethra pain. Even when i go and go and go. It feels like I have to go and that I have a UTI (but I don't) lower back pain, painful intercourse and when I feel the urge... I don't have long to get somewhere.

    Sorry this is so... all over the place. I just got all this news and scheduled all this surgery in the past few weeks. I am so overwelmed.

    Newly DXed with IC. Long time sufferer of gluten sensitivity, IBS, Celiac, pelvic floor dysfunction and prolapse.

  • #2
    Hang in there --- it will get better. There's a link to the latest food list for the IC diet in my signature below. It's really not bad once you get used to it.

    Sending warm hugs,
    Stay safe

    Elmiron Eye Disease Information Center -
    Elmiron Eye Disease Fact Sheet (Downloadable) -

    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:


    Diet list:

    AUA Guidelines:

    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.

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


    • #3
      Thank you Donna. By itself I am sure it's not as bad as it could be. Being gluten free WITH IC diet is what is bothering me. I am 1oo% gluten free as it is. I feel like there is just nothing good to eat anymore, like food is my enemy.

      I just need an adjustment period I think. To accept.

      Newly DXed with IC. Long time sufferer of gluten sensitivity, IBS, Celiac, pelvic floor dysfunction and prolapse.


      • #4
        My pcp has a way that he looks at food, he says that if you can find other ways to enjoy life and only see food as a source of energy and necessary to live. His point is for when you are dieting but I think we can used that view as well, although it isn't easy, I have been trying. It really does make sense, in our society we put so much thought and energy in how our food tastes and the whole experience. It seems to be our favorite past time! Maybe that is why we are getting bigger and bigger.

        I know that is has to be doubly hard to have several diet restrictions. I am sorry for all of us that have to go through this. If we could try to eat not for enjoyment but for nutrition perhaps it would help us deal with it better.

        Good luck to you,
        Link to the patient information, everything from What is IC? to Disability

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom