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  • Bladder Instillations not working

    I've had 4 out of 6 of my first lot of bladder installations and I don't feel any difference at all. The nurse told me that it's likely that I would of felt some sort of difference by now, but nothing. My urologist has said that if the instillation don't do anything then he's going to put me on medication. I just wanted to ask other people's experiences of instillations that haven't helped? Well wishes

  • #2
    Re: Bladder Instillations not working

    I have never had an instill (except after my hydro), but I asked my uro about them the other day. He said he finds they usually only help for a short while. Not sure though, might just be his opinion.
    Jane
    Diagnosed 1/7/14 via cysto/hydro

    Current Treatment:
    10 mg amitriptyline, DH Aloe Vera

    Used During Flares:
    Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

    Practicing bladder training and stress control (hot baths, pelvic stretching)
    Recently tried PT, do not appear to have PFD

    Things that have not helped in the past:
    Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

    Also have migraines and IBS

    Comment


    • #3
      Re: Bladder Instillations not working

      I just had instill 4 of the first 6 this week and there is a definite pain reduction. My urology nurse says it takes between 4 and 6 instills to show effect if it is going to. My instill is Cystistat.

      Comment


      • #4
        Re: Bladder Instillations not working

        Originally posted by Ellie850 View Post
        I've had 4 out of 6 of my first lot of bladder installations and I don't feel any difference at all. The nurse told me that it's likely that I would of felt some sort of difference by now, but nothing. My urologist has said that if the instillation don't do anything then he's going to put me on medication. I just wanted to ask other people's experiences of instillations that haven't helped? Well wishes
        Do you know what is in the instillations? That can make a difference in how you react to them.

        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


        • #5
          Re: Bladder Instillations not working

          Originally posted by Ellie850 View Post
          I've had 4 out of 6 of my first lot of bladder installations and I don't feel any difference at all. The nurse told me that it's likely that I would of felt some sort of difference by now, but nothing. My urologist has said that if the instillation don't do anything then he's going to put me on medication. I just wanted to ask other people's experiences of instillations that haven't helped? Well wishes
          I had 7 DMSO (RIMSO 50) instills and they didn't do anything so I stopped, but my gyno only wanted to do it once a month, which I didn't feel was often enough. My cousin who had a severe case of IC went in complete remission 5 years ago with the same instills every week, gradually going to every 2 weeks, 3 weeks etc. for a period of 2 years till her IC was gone. She said she felt a difference after the first 2 or 3. That doctor is since retired, no one will give instills that often around here anymore.

          Comment


          • #6
            Re: Bladder Instillations not working

            Originally posted by Helen B View Post
            I had 7 DMSO (RIMSO 50) instills and they didn't do anything so I stopped, but my gyno only wanted to do it once a month, which I didn't feel was often enough. My cousin who had a severe case of IC went in complete remission 5 years ago with the same instills every week, gradually going to every 2 weeks, 3 weeks etc. for a period of 2 years till her IC was gone. She said she felt a difference after the first 2 or 3. That doctor is since retired, no one will give instills that often around here anymore.
            Some years ago I had DMSO on a schedule similar to your cousin's --- I had gradually gone down to once a month and had them for probably three or four years on a monthly basis before they stopped helping. And I definitely still have IC. You might want to talk to your doctor about doing rescue 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

            Comment


            • #7
              Re: Bladder Instillations not working

              This instillation is Cystistat, there's no pain reduction at all, the one thing I have noticed is that I haven't had a uti since the instillations started and I normally get them very frequently. I will be seeing my urologist in 2 weeks to discuss whether I can feel a difference, and if not we will discuss medication

              Comment


              • #8
                Re: Bladder Instillations not working

                Thanks for sharing your experience Donna, I thought the only thing standing between me and remission was a doctor willing to do instills once a week..I guess it works differently on everybody.

                Comment


                • #9
                  Re: Bladder Instillations not working

                  Originally posted by Ellie850 View Post
                  This instillation is Cystistat, there's no pain reduction at all, the one thing I have noticed is that I haven't had a uti since the instillations started and I normally get them very frequently. I will be seeing my urologist in 2 weeks to discuss whether I can feel a difference, and if not we will discuss medication
                  Finding the right formula in medications is a bit of trial and error and time consuming sometimes, specially when we want the feeling to go away..NOW, but no UTI's is a good thing, it'll be good to get your uro's input, and maybe try something else!

                  Comment


                  • #10
                    Re: Bladder Instillations not working

                    Lidocaine and heparin

                    Comment


                    • #11
                      Re: Bladder Instillations not working

                      My urologist must be totally different from everyone else's. He told me from the start it could take up to 8 months for the heparin/lidocaine to start helping and it took exactly 8 months for that to happen. I was just getting ready to call it quits. There are times when it makes it worse but most of the time it helps. It doesn't solve the IC problem (Peeing and pain) but it does help. I've been doing the installation for over 12 years now but I also take hydroxyzine at bedtime and Percocet but the Percocet was added years later but with just the heparin/lidocaine I went from peeing every 10-15 minutes to down to every 20-30 minutes and when the Percocet was added I stopped getting up at night to pee all together. I don't know if you should keep trying it but maybe it will take longer before it starts helping you too.

                      Comment


                      • #12
                        Re: Bladder Instillations not working

                        I had the DMSO too but that totally killed my bladder.

                        Comment

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