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  • #1

    Dsmo ?

    Hi all
    I really neeed your advice , Seen my uro on Mon, i had 3 hydros , i've also done a cystistat trial. Still do not know what i was given.That was 8 months ago.My pain is incressing ! I'm on the Elimiron but in constant pain as my uro said in the 4 years he's been treating me my bladder capcity has gone from 350 to now at 170cc. He has suggested that I try the DSMO . I'ts scares me to see some negative stories here .But iIm running out of options. he says it's no diffrent than other installs. All advise is welcome. He also suggested I have the surgery for incontenince , It's a hour surgery and he says I will no longer have leakage issues.

    Hugs to all Sandra
    "Never Give Up."

    To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/7769467@N03/

    My Photobucket Link:
    http://s237.photobucket.com/albums/f...ramack_photos/
    Tags: None
    • #2
      DMSO actually helps a lot of people. It worked for me for several years. The first few treatments were painful, but after that not bad. As a precaution, I suggest that if you decide to try it, you request that the solution contain no more than 25% DMSO. (There can be some negative side effects if a stronger solution is used long term).

      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
          Donna is right it does help lots of people. That is a tough personal decision. I would weight the benefits versus the risk.

          Erika
          IC diagnosed officially via cysto/urodynamics 1/26/07

          Grade II Endometriosis diagnosed via lap 12/11/07

          "Fall down seven times, Stand up eight."

          "Life is a tragedy for those who feel and a comedy for those who think."

          Current Treatments:
          Interstim Since 5/25/07!
          Birth Control

            Comment

            • #4
              Thank you both for your replies & advise, i will do more reading 7 hope to get more replies from other's who have had it done.Until I make up my mind .

              Hugs Sandra
              "Never Give Up."

              To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/7769467@N03/

              My Photobucket Link:
              http://s237.photobucket.com/albums/f...ramack_photos/

                Comment

                • #5
                  HI! Have you tried other medications for your bladder problems? Roxie

                  Double Spinal Cord Stimulator surgery 8/09
                  Unsuccessful MiniArc sling surgery 12/07
                  Dx'd Hypothyroid
                  Dx'd Chronic Axonal Neuropathy & Myopathy
                  June 2007
                  Dx'd IC May 2006 (after suffering for 25+ yrs!)
                  First Cysto 1979
                  First Hydro 1981 (Many treatments since then!)
                  Collagin"Durasphere" injections for urethra
                  Gall bladder surgery Aug. 2004
                  Gastric Bypass Dec. 2004
                  Dx'd: Barrett's Esphogus July 2004
                  Dx'd: Vaginal Atrophy 2005
                  Bladder surgery 2000
                  Dx'd: IBS 2000
                  Hysterectomy (fibroids) 1999
                  Laminectomy 1989
                  Dx'd: Degerative Disk Disorder 1989

                  For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                  I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                    Comment

                    • #6
                      Hi Roxie
                      i've tried Elimiron.Ditropan Oxytrol. Antrax , noratripiline Lyrica, Tramacet . Cystitsait , but not dsmo yet.
                      thanks Sandra
                      Ps also #3 hydros, and hunners burnt off In 1st hydro.
                      "Never Give Up."

                      To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/7769467@N03/

                      My Photobucket Link:
                      http://s237.photobucket.com/albums/f...ramack_photos/

                        Comment

                        • #7
                          OH ok.......it sucks when you have to try so many different meds just to get relief! I see you tried Noratriptyline........did you try Elavil? It works great for me. Roxie

                          Double Spinal Cord Stimulator surgery 8/09
                          Unsuccessful MiniArc sling surgery 12/07
                          Dx'd Hypothyroid
                          Dx'd Chronic Axonal Neuropathy & Myopathy
                          June 2007
                          Dx'd IC May 2006 (after suffering for 25+ yrs!)
                          First Cysto 1979
                          First Hydro 1981 (Many treatments since then!)
                          Collagin"Durasphere" injections for urethra
                          Gall bladder surgery Aug. 2004
                          Gastric Bypass Dec. 2004
                          Dx'd: Barrett's Esphogus July 2004
                          Dx'd: Vaginal Atrophy 2005
                          Bladder surgery 2000
                          Dx'd: IBS 2000
                          Hysterectomy (fibroids) 1999
                          Laminectomy 1989
                          Dx'd: Degerative Disk Disorder 1989

                          For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                          I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                            Comment

                            • #8
                              Been there done that.
                              Hugs Sandra
                              "Never Give Up."

                              To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/7769467@N03/

                              My Photobucket Link:
                              http://s237.photobucket.com/albums/f...ramack_photos/

                                Comment

                                • #9
                                  I have DMSO instilled in my bladder every 3 weeks for the past 15 years and it has been a lifesaver for me. Like Donna said the first few treatments can be very painful but it gets easier with time. I think the key is to have your Urologist instill lidocaine into your bladder first and leave it there for 15 minutes to numb your bladder prior to instilling the DMSO. This is how my Dr. does it and it really helps. I always have the DMSO instilled on a Friday so I have the weekend to rest since I never feel great right after the instillation but then my symptoms really improve. Hydros and DMSO have been my treatment for the past 15 years. When the DMSO stops working for me I just have a hydro and then the DMSO works again. Feel free to PM me if you have any questions.

                                    Comment

                                    • #10
                                      Dmso

                                      I have been doing these instillations for over 4 years. I use, DMSO, Solu Cortef, Marcaine, Heparin, Sodium Bicarbonate. Each time they are very painful that evening, but by morning I have relief. THe only thing I don't like about the DMSO is that I have a very garlicy smell afterwards.

                                      The rescue instillations are very worth the pain I go through.

                                        Comment

                                        • #11
                                          Dmso

                                          I also have been helped with the DMSO treatments - in fact I am currently in a six week cycle of receiving the instillations every Monday. After the 3rd instill my pain and the urgency and frequency seem to lessen.

                                          If you are in a great deal of pain, talk to your doctor about the benefits vs. the negatives. There is a lot of info about DMSO on the boards - but you need to see what your own urologist thinks.

                                          Good luck!

                                          Hugs,
                                          Beth
                                          IC diagnosis 1999
                                          Meds: Elmiron
                                          hydroxyzine hcl
                                          DMSO as needed
                                          valium as needed
                                          librax 3x day

                                          TENS therapy



                                          Thanks to all on the boards - YOU have helped more than I can say!


                                          A person's true wealth is the good he or she does in the world.

                                            Comment

                                            • #12
                                              I haven't had the DMSO done but it is one of the treatment options my uro mentioned when he confirmed my IC by biopsy. He is trying me on Elmiron, Elavil, and Urelle first and he did mention this if I didn't feel like the meds were working. I had read that a lot of people find it painful and I mentioned that. He said his patients have tolerated it very well but if it was uncomfortable for me then we would stop doing them.
                                              Christine



                                              I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                                              1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                                              2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                                              I have tried every oral medication as well as rescue instills and DMSO.

                                              I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                                              Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                                              Also proud mom to the best Bullmastiff on earth, Claus

                                                Comment

                                                • #13
                                                  I have never had it, but, I know that it really helped my mother, many years ago. If you have diabetes please look further into this treatment. From what I can remember it can and will affect your vision. They also say that it can also make your bladder worse now and/or later. You know there is a down and an up side to every med for IC, and we all react differently.
                                                  'The will of God will never take you where the Grace of God will not protect you.'

                                                    Comment

                                                    • #14
                                                      understand

                                                      Hi! I also had the DMSO thing done more times than I can count. They really seemed to help me a lot! As you have said it is uncharted territory so you never no when is too many and visa versa. I was in the midst of a group of 10 instills --1 every other week and this was probably my 70th all in all when all of a sudden I could not hold it even a minute! I made it to my car and just barely to the bathroom before the vomiting began! I thought I was having a stroke b/c my throat went numb from the lidocaine! It goes on and on and luckily no permanent damage but just wanted to let you know it can happen anytime! Good luck and feel good-Malone

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