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  • I'm sooooooooooooooo mad!!!

    I have been having the heprain installations for many many years. It's the only thing that helps my IC other then pain meds and I lost the pain med back in spring due to changing doctors. Tried different doctors to change to and all of them pushed marijuana on me. One even told me about a guy who sells it out of his truck. Well, my urologist was bought out by another big medical place few years bback and their new rule is "Nurses only" do installations. I've been fighting and fighting with them. My uro is the only one who can do them because every nurse I have tried over the years just didn't do it right. I know it's done the same way by everyone but for some reason when my Uro does the installation it helps. I don't feel the big pain from the catheter which is the big deal with doing this. If I feel the cath and they hit my bladder wall (They seem to think I have the anatomy of a man down there) then that's it. I'm doomed....Well, I've been giving in lately and with the last 2 installation weeks ago it made my bladder feel like I had the cloropactin done! It's just awful!! At least in the hospital for that I was given morphine. No morphine now. I went from doing as best as it could ever get with IC to right back where I was in the beginning. Bladder spasms like I've never had before...irritations...pain...peeing every 5 minutes again. I"M SOOOOOOOOOOOOOOOOOOOOOOOOOOO TICKED OFF!! In the past when I complained enough my Uro did the installations but I got tired of fighting but no more. Have an appointment next week for another installation with the nurse and I'm telling them no more of this! He does it or I drop the Heparin all together. What is it with medical places thinking their rules work for everyone?! They don't care. Very few things even help with IC to begin with.
    Sorry for the post. I just needed to vent some where and I know you all understand my frustration.


  • #2
    Have you done self instillations? I know that for me it's easier to insert a catheter myself. When I did heparin instillations, I did them twice daily for a while, then gradually decreased frequency. If you don't feel comfortable doing them yourself, I suggest you insist on use of the smallest catheters available --- I used flexible ones. Hopefully they will be willing to work with you.

    I understand why you are feeling frustrated.

    Warm hugs,
    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

    Comment


    • #3
      I tried doing it at home years ago and it didn't go well. Kept getting UTIs and the pain was bad. In order to get the cath in without a lot of pain I have to lay flat and I can't reach down there then. I'm having it out with them on the next visit. Had to buy the Azo pill to get things some what better and I hate taking that pill. Don't like the side effects. Plus if the doctor did it like always I wouldn't even need that pill. Been years since I had to take it.

      Comment


      • #4
        I don't like taking AZO either, but when there's pain, it can be a relief. Panty liners are a necessity to help keep from staining clothes --- and vinegar helps remove stains from the toilet. Good luck with your doctor.

        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

        Comment


        • #5
          Told the nurse once and for all no more doing this without the doctor and her response........I'm not sure why not since we do the cath the same way as the doctor....my response to her...yeah, but it still isn't done the same way. Just like blood work. Everyone does it the same and yet some people who do it you end up black and blue for a month. While others you don't even feel the needle. Then she said everyone doesn't like a little pain down there and that just about threw me over the top! A little pain???!! I told her a cath to me is not the same as normal person and I don't just have a little pain. The last two installations made the pain level at least 50 (I'm not kidding on it either) and I couldn't sit down. She will tell doc blah blah blah...her exact words...blah blah blah.........even IF the doc said yes I'm saying no more. Won't even call them back. I'm just walking away saying no more. I'm so done with this. No one and I mean no one understands what this is like unless they live it. All I have ever done is fight from family, friends, doctors, nurses, hospitals from day one and I'm so done now. It has been a very long long road for me (just like all of you) and I am no longer the happy trusting helping others out person I was when this all first started. Have learned to say no in helping someone who would not help me once and only because they didn't want to. I no longer feel guilty about saying no. I'm tired...worn out and smarter. In the beginning I was stupid...very very stupid and I have learned what life really is. Can't depend on family or friends. No such thing as family or friends. Family are just people you were forced to live with until adult age when you can get out and away and no such thing as friends. That is my one biggest mistake of all. I thought of the doctors/nurses as friends. Saw them more then family and they treated me real nice BUT I was saying yes all the time. Once I say no then they did the same thing as family and friends. At least now no more doctor appointments and I only need to go out in this awful world once a month for groceries. I've always wondered why....why did I get stuck with this? The reason --so I would open my eyes to what my world really was with family/friends. Just a slave for them all. I'm fine living as a hermit. I like the peace and quiet.

          Comment


          • #6
            It could be that the doctor will be willing to do the instillations --- you might want to telephone the office and ask. I hope your tomorrow will be a better day.

            Sending gentle hugs,
            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

            Comment

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