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My IC-like experience

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  • My IC-like experience

    I have had "bladder sensitivity" for many years,
    but when I had and IUD inserted about 4 months ago, but burning, urgency,frequency, and pain started. For the first time, nothing that I did helped. I was used to just drinking more water and less coffee and soda and that would do the trick. My urologist hasn't given me the official IC diagnosis, but is treating me as though I have it. She doesn't want to do any invasive procedures, out of fear that my problems would get worse. I am on Elavil and elmiron. I haven't seen any positive results, but am waiting patiently. I try to keep myself busy with crafts at home, so I don't focus on it as much. That helps alot. The dietary restrictions are hard, and sometimes I end up not eating at all, out of fear that something will make it worse. I am trying to be patient, some days it is so bad that all I can do is get on this sight and read and read. I feel that information is power and reading all these personal experiences makes me feel that I am not alone in this! Thanks for all the inspirational and positive posts!

  • #2
    Welcome to the IC Network. I'm very glad you found this site. You have probably already read the information in the Patient Handbook (It's on the pull-down menu at the top of this page), but if you haven't, that's an excellent source of information.

    You didn't mention it, but did you have the IUD removed? I have know several people who had problems with them.

    I hope that what you have is not IC, but is sounds like it might be. Has your doctor mentioned doing any diagnostic tests? I personally would not feel comfortable not knowing, but everyone is different --- and some feel okay with diagnosis by symptoms only.

    Warm healing thoughts,
    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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    • #3
      Thanks for the input, ICNDonna. To answer your question, I did have the IUD removed. The problem didn't go away, but I think it is somewhat better.
      This was a difficult situation because my gyno.
      swore up and down that it could not be the IUD, even though the symptoms started only 4 days after. She went through a million tests (seemed that way) before she would talke it out. Finally, when she took it out, she did so only because I insisted very strongly. I am now hooked up with a great Urologist who thinks that the IUD probably traumatized the area and that I have always, more that likely, been prone to bladder discomfort.
      Thanks again for the support!

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      • #4
        Hi Melissa.
        Sorry to hear about your bladder problems but I'm so glad you found us! Very interesting story about your IUD. I suspect your uro is right about aggravating an already existing problem. I hope Elmiron works for you. I've had really great success with it.

        Sending healing wishes,
        Melanie J. [img]smile.gif[/img]
        "The sun shines not on us, but in us." John Muir

        Living a happy life in spite of IC! http://www.ic-network.com/patientstories/melanie.html

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        • #5
          Hi MelanieJ:
          I agree with Donna's statement about getting a positive diagnosis. They could do an in-office potassium test or perform an outpatient cysto w/hydrodistention in the hospital. An in-office cysto without hydrodistention oftentimes may not show IC even if you have it. It may sound scary, but it's safer to actually know what you're dealing with than taking medications that may or may not help you. I can also understand why you feel frustrated that the meds haven't helped, but it can take up to six months before Elmiron kicks in. Since March 2001, I've been on Elmiron, Hydroxyzine (an antihistamine) and Amitriptyline (an antidepressant). When I have severe pain, I take Percocet and use a heating pad on my belly.

          Although I realize some individuals are diagnosed by exclusion, it sounds like your doctor hasn't exhaused all the diagnostic tools that are available.

          I hope you feel better soon! [img]smile.gif[/img] >Tina
          What you are is God's gift to you...What you make of yourself is your gift to God.

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