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  • DMSO--How bad does it hurt?

    Hi all,

    I am going to go for my second DMSO instill on Wednesday. My first DMSO was done last week after my cysto/hydro showed I have IC... ie, while I was still under general anesthesia. As a result, I didn't feel or see a thing and the only thing I know about is the resultant garlicky odor I am going to be putting out.

    So now, I am reading the old posts in this instillation message board trying to get an idea of what to expect. First off, the thought of putting DMSO into my bladder is a bit disconcerting-- I work in a research laboratory, and we use it as an industrial solvent to dissolve other chemicals that are not soluble in water. It just doesn't seem like it would be pleasant if it touched skin or mucous membranes!

    I am getting nervous, as people are describing this as having Ajax poured into the bladder. Does DMSO hurt everyone, or are there people out there who can share a story about how there wasn't too too much discomfort, just to keep a newbie from panicking for the next 48 hours?

    And if it happens that it was painful for everyone, can some of you experienced ICers share some tips about how you made your DMSO's more bearable?

    Thank you so much in advance!
    grouphug

    Jen
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. 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.

  • #2
    Jen,
    hon you poor thing i'm so sorry some post have scared you. don't worry about it so or you will be tenised sp? up and it will hurt you have to relax.
    I couldnt never handle the one that smell like garlic it sent me in a flare everytime but i do the heparin and marcaine at home everyday and it doesnt hurt at all it helps me. just remember everyone is diff.
    Donna also takes the dmso and i believe they help her also with no pain. there is alot of people that they have helped.
    now if you have an infection but the doctor will check before you have one done now that could be painful then but other then that don't worry so.
    just remember to relax. take a pain pill before you go have someone to go with you so you want be as nervous and IF its going to hurt the pain pill will help.
    if you would like to talk please feel free to pm me. I will pray for you i know your nerous.
    xxxxxooooooo
    Rhonda
    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!

    Comment


    • #3
      My first few DMSO treatments caused me to have pain and my doctor prescribed pain medications for me. I was about ready to stop them when I slept a whole night without even one potty trip. That was the thing that convinced me.

      I am on a monthly DMSO schedule now and it's not bad at all. I do suggest you be pretty specific that you want lidocaine, or a similar substance, instilled before the DMSO. With the lidocaine, I have an uncomfortable feeling for a few hours, and I don't plan to do much on DMSO day, but the rest of the time I reap the benefits. I'm very fortunate in having it help me.

      Sending an encouraging hug,
      Donna
      Stay safe

      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


      • #4
        I was very scared, the catheritising worried me the most. It wasn,t that bad, DMSO/elmirion, some cramping afterwards. I take viox, works best for me. I had 6wks of treatments, few months of total relieve, now twice wkly and its alot easier. Stress does make things worse. Hope this makes you feel better,my prayers are with you. SIncerely TRacey
        tracey davis

        Comment


        • #5
          Hi Jen,
          I just finished a series of 6 RIMSOs and I found some ways to decrease the discomfort. First of all make sure they instill some lidocaine to freeze things up a bit first. I had lidocaine gel on the cath tube as well so that made the cathing comfortable. Then they do the instill, hold for 20 minutes and then pee it out. While holding the RIMSO I kept a warm blanket folded across my abdomen and that felt very good. Then I drank 3 large glasses of water to flush my bladder, and took my pain medication. I had a stick on heating pad with me on my undies as well. When I came home I popped into a hot bath with a magazine. Usually within 60 minutes of the instill I was feeling fine, with pain meds in my system.

          I think it is worth it to give it a try, if it helps it would be great.

          Good luck!
          Cath
          One day at a time

          Comment


          • #6
            Hi Jen,
            I just finished a series of 6 RIMSOs and I found some ways to decrease the discomfort. First of all make sure they instill some lidocaine to freeze things up a bit first. I had lidocaine gel on the cath tube as well so that made the cathing comfortable. Then they do the instill, hold for 20 minutes and then pee it out. While holding the RIMSO I kept a warm blanket folded across my abdomen and that felt very good. Then I drank 3 large glasses of water to flush my bladder, and took my pain medication. I had a stick on heating pad with me on my undies as well. When I came home I popped into a hot bath with a magazine. Usually within 60 minutes of the instill I was feeling fine, with pain meds in my system.

            I think it is worth it to give it a try, if it helps it would be great.

            Good luck!
            Cath
            One day at a time

            Comment


            • #7
              Hi Cath! Thanks for these tips! This is great. I think I will definitely follow your advice about the heat (I will make certain to bring a ThermaCare sticky heat pad with me), large glasses of water, & pain pill after. My hubby is also going to come with me to the dr's office tomorrow... he's like my security blanket lately (luckily he likes it)

              I am hoping to make it into work after the instill at some point, but I told them I may not depending on how much pain the instill causes. I guess we'll wait and see how it goes tomorrow!

              Again, thanks for the tips kissing --they are much appreciated!!

              Jen
              ****
              Jen

              *Diagnosed with severe IC in 2004
              *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
              *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
              *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

              **I am not a medical authority nor do I offer definitive medical advice. 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.

              Comment


              • #8
                Jen, be sure to post so we know how you are.

                Your husband is such a dear to come to your appointment and support you in your IC journey. Give him a hug from all of us on this message board. grouphug

                Hugs to you as well, Carla

                Comment


                • #9
                  Hello and I know exactly how you feel about DMSO instills and concerns about starting.

                  I just finished 6 weeks of weekly DMSO/heparin instills. My uro does not use lidocaine, so immediately after each instill, I would take Urelief PLus tablet (its like pyridium) and if
                  I was not driving home, a vicoden. When I got home, I would hop in a warm bath with baking soda. ALso used the heating pads alot. It felt to me like they filled up my bladder with really hot water (it burns), and it is an uncomfortable 15 minutes. However, it was not as bad as I was
                  afraid it would be, especially after I had such a horrible experience with the cysto/hyrdro (they over stretched my bladder, it "shut down" for a few days, and since then, my IC has been at least 10 times worse than it was before I had the cysto/hyrdo). The instills seem to help many people, but that has not been my experience, but it was not a horrible thing to try. I also drank lots of water after. The garlicky odor and breath is yucky, but tolerable.

                  I wish you the very best of luck. Please keep us posted.

                  Stacy

                  Comment


                  • #10
                    HI I'M ON MY 6TH TRATMENT ON FRIDAY AND I FIND THE INSTILLATION INTO THE BLADDER NOT THAT BAD.
                    YOU GET A GARLIC TASTE IN YOUR MOUTH RIGHT AWAY SO I CHEW GUM BUT TRY TO HOLD IT AS LONG AS YOU CAN . YOU MAY HAVE A BIT OF BURNING WHEN YOU FIRST URINATE BUT OVERALL IT'S NOT TOO BAD FOR ME. I HOPE THE SAME FOR YOU
                    GOOD LUCK
                    BANDIT 63

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