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  • painful instillation

    Does anyone know why all instillations are painful for me? In other words, why are some people able to tolerate cathing, even self-cathing, with no problem, but for me, it doesn't matter what they are instilling, it still hurts a lot in the urethra and where the bladder empties into the urethra. I have had DMSO, heparin, and elmiron instilled and they all hurt in the bladder, and every time the cath hurts the urethra as well. Just wondering what the deal is!

  • #2
    At no time is a catheter easy for me. Size and type of the catheter make it a little easier. Right now I have been self-cathing for 4 months. It is tolerable but not pain free. My urethra spasms afterwards, and I do take an anti-spams medication.

    You do what you have to.
    Liz

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    • #3
      I think all of us either have or have had very sensitive urethras. When I was first dealing with IC, I remember that catheters were awful. Now when I have an instillation, it's not too bad. I'm not sure if it's just because I'm used to it or if it's the lidocaine that's instilled first. When I have to be cathed for any reason, I concentrate on relaxing --- it really helps.

      Cathing myself is not a problem and not as bad as having someone else do it.

      Donna
      Stay safe

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      • #4
        Donna has a good suggestion. If you are having an instill, the use for lidocaine jell inserted in the urethra ahead of time should help.
        Liz

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        • #5
          I had a very hard time with instills. You are not alone on this. There are many women that have troubles with it.I couldnt tolerate DMSO my body just couldnt take it for some reason it was the most painful thing I have ever felt before I would have my son 10 times over than to have to go through that nightmare. I did stick with it and followed through to 4 of them but it was unbearable at times. I just think everyone's bodies of course are very different and we all react differently to really everything weather it is oral meds or instills.
          I hope this makes you realize that you are not alone in this matter. But I do have to say that I think after doing the instills for awhile I hear it gets better. I was also getting a bladder infection after every instill that I did. Which as we know was horrible for IC.
          I hope you get to feeling better soon
          Kim

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          • #6
            The DMSO part of instills usually stung me for 3-5 days; yet the procedure helped me heal a Hunner's Ulcer that covered the entire floor of my bladder.

            After 3 years of DMSO cocktail insills, I started having problems because of diabetes and other health issues.

            I have turned to another type of instill which I have used for 4 years. Occasionally, I still have to use DMSO in an instill if I have to calm down inflammation; this is no more than 2 times a year.

            However, I realize that the DMSO (Rimso) is not for everyone.
            Liz

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            • #7
              I had such a horrible time that uro told me to take Pyridium 2 hours before the procedure. I did and it worked--very helpful. Uro said there are so many nerves in there that when the cath goes in, it really causes them to react. No one else has ever mentioned this and I've never seen it anywhere else, but it worked for me. Strange, huh?

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              • #8
                I can't tolerate cathing of any kind. My urethra is narrowed (according to uro) and I have extreme pain and severe spasms in my urethra and bladder with the smallest catheter.

                But it seems most people here can cath and have had success with instills. I would talk to uro about ways to make it less painful...lidocaine or oral meds?

                Take care,
                Nicole

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                • #9
                  I have been having my instillations under general anesthetic so I do not feel anything and wake up in not much pain. The steriod is mixed with anesthetic (the doctor calls it magic juice). It does hurt to unrinate and I my bladder and stomach does become sore about day three when the anesthetic has worn off. Does this sound right to people?

                  Peta

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                  • #10
                    I have been having my instillations under general anesthetic so I do not feel anything and wake up in not much pain. The steriod is mixed with anesthetic (the doctor calls it magic juice). It does hurt to unrinate and I my bladder and stomach does become sore about day three when the anesthetic has worn off. Does this sound right to people?

                    Peta

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                    • #11
                      Could it be the laytax?(sp?) i my body can't handle the laytax(sp?) but i have to take the treatments even when i'm in the hosp they have a big sign on my door that reads NO LAYTEX.(sp?)The heparin treatments has helped my bladder so much I'm not fully back to my self but i do find i can do more then i use to. I also can eat things that i couldnt before. I do feel much better due to heparin and marcaine mixer. its helped me get back to some what of a normal life I do have use ky jelly for the cath.
                      Medicine taken daily or as needed:
                      1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
                      2. MS.Cotin 100mg 3x daily
                      3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
                      4. Fentanyl 100 mg Change every 48hrs.
                      5. Gentamicin 80mg install after each rescue treatment
                      5 Leviquin 500mg self start as needed.
                      6. Klonopin 1 or 2 daily as needed.
                      7. Prosed/DS as 1 every 6hrs as needed.





                      I have IC, but IC doesn't have me anymore!

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                      • #12
                        I just had my first heparin instillation. OUCH! That hurt so much more than I thought it would. My urethra was and it on fire.

                        Dr. said to keep it in for 3 hours. And I'm nervous about the upcoming void.

                        Question - OK to take pyridium or will it interfere with the heparin?

                        Thanks.

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                        • #13
                          Thanks, everyone, for your replies.

                          Wish me luck - I am probably going to get the first DMSO instillation in about 3 years this afternoon, if the uro gets out of surgery in time to see me.

                          I am "way nervous" as the time I tried it before, I got worse before I got better, but was better for about 5 months before symptoms returned.

                          I will post how it goes.

                          Diana.

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