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  • #1

    1st DMSO treatment..Is this common?

    Hello Icers,

    I had my first DMSO and will have six total.
    That evening I got up 8 times to use the toilet and it hurt like hell. Is this commom? I don't think he used a lidocaine, but I will ask for him to include a numbing agent.
    I'm also have bad uretha pain...I fell like I need to push on it...Yikes, nothing like crying when using the toilet.Does anyboby out there get that?

    Love,
    BJohnson


    Brigitte
    Tags: None
    • #2
      Hi BJohnson,
      I went thru the same kind of thing with DMSO and it settled down after a day or so. The lidocaine does help but it wears off and then I would be sore. I had them use pediatric catheders that had lidocaine jelly on them and then the urethra burning wasn't so bad after the first time. I hope that the DMSO treatment works for you.
      Cath
      One day at a time

        Comment

        • #3
          Even with lidocaine my first few DMSO treatments were very painful. I was ready to stop them when one night I slept through the night. That was enough to motivate me to continue. I had eight weekly instills, then went on a once a month schedule.

          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

            • #4
              I have felt the same that you are as well I think it is very common. Hang in there with it because alot of people get major help with having DMSO done.
              I had 4 out of 6 done and I didnt have a good response with them at all they made my flares worse and caused me infections. I am just telling you that so you know that if DMSO fails for you, you are not alone in that. Hang in there with it and take it as you can if it gets to be too painful and setting you back please make sure you are straight up with your Dr. and tell him you want the treatments stopped. This is suppose to help you not hurt you! Natually they are very uncomfortable but after the two or so it should get better if your body can take it.
              Good luck to you I will pray that it works for you grouphug
              Kim

                Comment

                • #5
                  the first few i had was awful also and they tied diff ones on me the garlic one was AWFUL! but they went back to heparin. now I do the heparin treatments at home, but i will never forget those frist few one's i had i hate to say it but i never let them finish the treatments in the office because they always hurt me.
                  my husband can give me a treatment and not hurt me why they always hurt in the office is another question? Good Luck and let us know what you decided to do
                  Merry Christmas And Happy New Year 2004 grouphug
                  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

                    • #6
                      So sorry to hear that DMSO has been a bad experirnce. I went thru the series back in November, and I was PETRIFIED!!!!! I found the actual instill to be uncomfortable, and usually was in pain for a day or so after, but then things would calm down. Now that I am all done, I can honstly say that they have helped alot with my pain, but the frequency issue is becoming a real problem! banghead Best of luck to you..hang in there, and let us know how you are doing! grouphug
                      Wishing you the best, today, tomorrow, and always! Sheri G

                        Comment

                        • #7
                          Hi there everyone,

                          I feel bad because I can't get one the boards as much as I like. Thank you for all the suport.

                          I ended up having a bad infection and a lot of blood in my urine.I had to go on Cipro...That's an expensive drug...

                          I had my 2nd DMSO this last Tuesday and it doesn't hurt at all, but what's up with the smell that lingers after? My kids tell me I smell like sour milk. I can't smell it, but everybody else can.
                          Is there a way to get a DMSO w/o the horrible smell? If so let me know.

                          Thanks again,
                          BJohnson


                          Brigitte

                            Comment

                            • #8
                              The smell usually goes away overnight for me. I can also taste it. I always take Altoids mints with me for after a treatment.

                              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

                                • #9
                                  grouphug grouphug grouphug
                                  Hang in there , There is hope.
                                  There is hope. Prayer works.

                                  Love, Debbie

                                    Comment

                                    • #10
                                      The DMSO smell comes with the territory, alas.

                                      Best you can do is use a lot of gum/breath mints/mounthwash until it outgasses. You can speed the process with exercise - if you raise you respiratory & metabolic rate, you can drive it off more rapidly.

                                      But tell us hoe you felt afterward?

                                      cheers
                                      marti

                                        Comment

                                        • #11
                                          Hi B Johnson,
                                          I did my first of my second series last Friday, and I am in alot more pain but I am giving it time to see if I can get some value from it. I had the lidocaine and was still in alot of pain, but it probably helped.
                                          Take Care,
                                          Cath
                                          One day at a time

                                            Comment

                                            • #12
                                              I too found the first few DMSO treatments very painful - so bad that I would have to hold my crotch while trying to drive home! I hung in there, and after 4 or 5 treatments the pain really began to subside. The dr said that the deep tissue inflamation - which the DMSO is targetting - can take several treatments to improve. I stopped after 8 weekly treatments, and the pain started to return. The doctor resumed the weekly treatment (which weren't so bad this time around) and then gradually weened me off them - by going every 2 weeks, then after 3 weeks etc. That seemed to work for me.

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