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Anyone with pain with all instills?

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  • Anyone with pain with all instills?

    I am going for my 6th instill/rismo treatment on Friday. The only treatment that did not bother me was the 2nd one. The rest of them have really hurt bad and this is with taking some pain med before I go in and also having them to put pain medicine in before they even cath me. Has anyone else had this problem? I thought that they were suppose to get better after the 2nd or third one? Thank you for any advice you can give. bamafan

  • #2
    I always have some pain with instillations, but the end result has made it worth it for me.

    I just hope they help.

    Donna
    Stay safe


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    • #3
      Thank you Donna for your response I really appreciate it. I hope that i can say the same thing at the end. Bamafan

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      • #4
        I do rescue instill and had pain at first. then we realized I reacted to the preservatives. We found all preservative free alternatives and they help A LOT!

        Is Rismo DMSO? If so and it doens't work try and rescue instill
        Shelly Matthewson
        Private Researcher
        IC Support Group Leader
        Director of MOARK Interstitial Cystitis
        www.moarkic.com

        Also diagnosed with Meduallary Sponge Kidney Disease, with many kidney stones and chronic infection, Pelvic Congestion Syndrome, and
        PFD

        "And we know that all things work together for good to them that love God, to them who are the called according to His purpose." Romans 8:28

        In His hands even IC (MSK, PCS etc.) can be a blessing and an opportunity to serve Him by help others. It is my heart to help others and to network patients and medical practitioners in Missouri and Arkansas!!

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        • #5
          the second one helped me too, no pain. Then 3,4,5,6 all burned terrible and never helped anything. DMSO is evil

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          • #6
            Heparin Instills

            I have had instills for the past two years. It kept me out of trouble until last month. Saw the Uro today and he said to continue 4 more. It takes time, I was in a lot of pain last week. Maybe it will be better this week. I am to continue Neurontin (100 mg. x 3 - low dose), Hydroxyzine at night. I have also added 1 Tylenol PM. I sleep through the night.

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            • #7
              Originally posted by Sharyn View Post
              . I have also added 1 Tylenol PM. I sleep through the night.
              I use generic extra strength Tylenol and generic Benydryl. That saves me $$$ because that is what is in Tylenol 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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              • #8
                Thank you to all for your replies. i am hoping that this one will not be as bad. I also hope that the doctor will not call for anymore treatments for a while. I am not sure if these are forever or not. I have only been diagnosed for a couple months now. Bamafan

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                • #9
                  Tylenol PM

                  I now use Costco's generic brand. The reccommended dosage is 2 tablets but I only use 1 tablet.

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                  • #10
                    New Instill

                    My new instill will contain DSMO, Heprin and Solu-Cortef. Has anyone had this combination and did you get any relief?

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                    • #11
                      Well I had the last instill and it was very painful when the cath was put in. I take alot of pain meds with it but doesn't help. i survived all of them not sure if they worked or not because still in pain this morning. I am not sure what is in my treatments but can find out. I hope everyone is doing well this day!!!!! Bamafan

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                      • #12
                        There are a lot of things that can cause pain with an instill. One thing that makes a difference for people is using a latex-free catheter. Another possible cause is the size of the catheter. Sometimes the catheter is advanced too quickly and it hits the bladder lining and for some they are just too painful to be an option for treatment.
                        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

                        Comment


                        • #13
                          I stopped doing instillations because they caused me horrific pain! I had terrible burning and swelling that lasted for a few days. It seems that no matter what I tried as an instillation, I had pain so I gave them up a while ago. I think my bladder had gotten so raw and sensitive that anything that went in there flared me. I even tried preservative free....but still had pain. DMSO was torturous but gave me some relief the next day. The various cocktails that I tried caused me to flare for days.
                          Mel


                          IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

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