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I was told that I can have this anytime but...

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  • I was told that I can have this anytime but...

    Im scared to death to have it done. Why would it make some people worse? Im starting to flare up again, pelvic pain, burning and frequency and Im tempted to make appt but I see some people are actually worse/??why is that? PLease help shed some light. Thanks!


    LIVE, LAUGH AND LOVE



  • #2
    I haven't had rescue instills done but I believe that there are many different combinations of meds and this may be why some people have a bad reaction? They need to find the right combo of meds for them. Ask your dr if they have had anybody have any problems with they combo they do maybe. Hopefully someone who gets them done will speak up.
    Christine



    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

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    • #3
      The Patient Handbook has information about the various instillations.

      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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      • #4
        I have been doing rescue instillations since 2004. It works for me. This is the only treatment I have needed and they take care of all my bothersome symptoms. I know that there are people with IC that have not been helped with rescue instills.

        There are a lot of recipes. There is also a vast difference in IC in general. What works for one doesn’t work for everyone. Obviously if it did we would all use it. As for it making if worse, I don’t know.

        I don’t think there is any way to determine if you will be helped by any treatment, including instills. It may be frightening to think that putting medicines directly into the bladder would give relief rather than pain.

        The lidocaine numbs the inside of the bladder. Some people have found they are sensitive to the lidocaine and it causes them pain. Sometimes the uro add steroids and that causes pain. If you are not comfortable with catheters that may cause discomfort.

        Be sure to let everyone in the MD office know your concerns. I know in my urogyne office I am encouraged to let my feeling be know. AND encouraged to call with any concerns, no matter how silly or simple they seem to me.

        I’ll be glad to answers questions about my experiences. PM me anytime. I don’t check IC site everyday so don’t get concerned if I don’t get back to you the day you PM.
        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
        My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

        Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
        I post to encourage and offer total support for rescue instillations.
        Find me on facebook: L. Clark Thomas
        Louann

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