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  • First instillation pain

    I had my first bladder instillation Thursday. It had heparin, lidocaine, and bicarbonate in it. For about 2 hours I was fine....then my lower back started hurting really bad. Once the lidocaine completely wore off my urethra staring hurting and my bladder started spasming. I am honestly worse than before I had the instillation. My doctor said to give it at least 2 more times before I throw in the towel. Has anyone else had a bad first experience but there after it got better and helped them?

  • #2
    Re: First instillation pain

    Yes! And it's not unusual for the first few instillations to increase pain for at least a few hours. You might want to ask about having the lidocaine instilled first, then the other ingredients --- that way the analgesic has a chance to protect the bladder from irritation from those.

    Good luck!
    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
      Re: First instillation pain

      Donna,

      It's been 3 days since my instillation and I still hurt. My back hurts and my bladder is so swollen. I have another one scheduled for tomorrow afternoon and I'm determined to keep it. But I'm scared that my pain will only increase more. Do you think each instillation will get easier?

      Amanda

      Originally posted by ICNDonna View Post
      Yes! And it's not unusual for the first few instillations to increase pain for at least a few hours. You might want to ask about having the lidocaine instilled first, then the other ingredients --- that way the analgesic has a chance to protect the bladder from irritation from those.

      Good luck!
      Donna

      Comment


      • #4
        Re: First instillation pain

        Just be sure to let them know that you are still in pain. For me, they did get easier.

        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: First instillation pain

          Originally posted by ICNDonna View Post
          Just be sure to let them know that you are still in pain. For me, they did get easier.

          Donna

          Thanks Donna! The second one wasn't quite as bad as long as I take USTELL every 4 hours. I don't know whether it's the USTELL or the instillation but I have GERD really bad this time. At least I think that's what it is...really bad chest pain with heartburn feeling. I take nexium everyday but it isn't getting rid of it. Has anyone else reported this after an instillation or from taking USTELL OR UTA.

          Comment


          • #6
            Re: First instillation pain

            I had several installations after I was first diagnosed, but it only intensified my pain, so I stopped having them.
            I hope they continue to work for you and gets better each time!

            Comment


            • #7
              Re: First instillation pain

              Originally posted by candylea View Post
              I had several installations after I was first diagnosed, but it only intensified my pain, so I stopped having them.
              I hope they continue to work for you and gets better each time!
              I'm noticing the same thing. I've had 3 instillations so far and while I hurt less each time from the instillation my bladder is flaring constantly now. Not sure what to do.

              Comment


              • #8
                Re: First instillation pain

                It really is a viscous cycle, sometimes if don't know where to turn or who to talk to because unless you are going thru this, you have absolutely no idea! It makes it doubly hard because I don't look sick on the outside, so people assume there's no problem. I do my best to mask my pain (not always successfully) but my husband and my mom can always hear it in my voice. This is kind of of the subject of installations, but I don't sleep much as night,me usually get up for three or four hours and depending on what time it is I normally don't go back to bed. Anyway, this morning I sat down wrote a letter to our State Legislature about legalizing MMJ in our state. It's coming up on the ballot again this year and since I've had absolutely no success with any procedures or meds I've been given, I'll really like to give this a shot. It seems to help so many people. I'm not sure how my kids would take it but they're 19 and 24 and have done some research on IC. My husband made them when I was diagnosed to try and help them understand what I go thru.
                I read a reply that Donna made to someone, and it may have been you (I really get confused sometimes on who I'm talking to on here, lol) that maybe your dr. could maybe change up the mix and see if that works .
                Praying for peace and comfort for all of us!
                Good luck!

                Comment


                • #9
                  Re: First instillation pain

                  I've had a total of 5 instillations over a 7-month period. The inside of my bladder feels good after them, but the spasms it creates is more than I can handle. Not going to get another one unless I am terribly desperate.

                  Comment


                  • #10
                    Re: First instillation pain

                    Originally posted by ahirby View Post
                    I've had a total of 5 instillations over a 7-month period. The inside of my bladder feels good after them, but the spasms it creates is more than I can handle. Not going to get another one unless I am terribly desperate.
                    Just an observation here, but the instillations sound stupid, retarted, horrific!!!!!!! My URO/GYNO will not bother with such inhumane activity. It really SOUNDS like they sould work ya know? Injecting all that medication directly into our tortorous bladders.Sometimes I just look at it all when it comes to the IC and its all such a fricking joke. But so many have found relief in therre own way.. we are all so individualized with our pain.. Like I have ic, but urine retention! I have to cath myself to empty my bladder about 5 times a day.
                    Its a blessing we have this board to communicate with eachother. I found a new bestfriend a couple months ago from here.
                    We help eachother and understand eachother.
                    love and prayers
                    Bmarinelli

                    Comment


                    • #11
                      Re: First instillation pain

                      When I first started getting instills (heparin, lidocaine, and sodium bicarb), I had some pain, but the more I did them, the easier it got. Now they are soothing. I do them at home now, and I do them 3x a week. If I am flaring, I do 2x a day.
                      ----------------------------------------------------
                      My blog on IC, adoption, and academia: the garlic whisperer

                      Diagnosed Jan 2013. Currently taking:

                      200mg Elmiron morning and night
                      25mg Elavil at night (no drowsiness or weight gain)
                      culturelle in the morning
                      SLIT drops for allergies (environmental) 3 drops/night under the tongue
                      zyrtec 24 hour nightly (recommended by uro)
                      Instillations 3x/week: Parson's Solution
                      uribel and prelief as needed

                      Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
                      No longer need them, so I only take them during flares.

                      Comment


                      • #12
                        Re: First instillation pain

                        Awe thanks BMarinella~you're so sweet!

                        Comment


                        • #13
                          Re: First instillation pain

                          Originally posted by candylea View Post
                          Awe thanks BMarinella~you're so sweet!
                          💙💙💙💙💙💙💙💙
                          Bmarinelli

                          Comment


                          • #14
                            Re: First instillation pain

                            Originally posted by miniguinea73 View Post
                            When I first started getting instills (heparin, lidocaine, and sodium bicarb), I had some pain, but the more I did them, the easier it got. Now they are soothing. I do them at home now, and I do them 3x a week. If I am flaring, I do 2x a day.
                            This is what I'm hoping happens for me too! I have noticed that with each they are less painful. I had one Monday and hurt only that day. Most of the other instillations I had hurt for multiple days. Today I'm in a terrible flare though. So I'm going in for another treatment this afternoon! Wish me luck!

                            Comment


                            • #15
                              Re: First instillation pain

                              I had them for 6 weeks (a long time ago) and sometimes they were effective but I stopped because I would only get relief for the time the install was inside me. I few times when the nurse was really quick with the catheter it was worth it. Once, I went to the bathroom though I was usually much worse because of the pain in my urethra. The last time I had it done, I was in horrendous pain in my urethra for hours. I thought I would never get one again and maybe I won't!!!! I have considered it since though because sometimes I'd give anything for a shot at a couple hours of relief.

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