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  • dmso question

    i've been going through a series of dmso instillations. my urologist said that i should start feeling better by number 3 or 4 (out of 6). well i just went to my 5th one yesterday and im still seeing no change. im not feeling worse but im not better either. the nurse and doctor both acted shocked that i was not feeling any improvement. they acted like it was unusual to not feel better after getting dmso. i thought this was wierd bc from what i have been reading, some people just do not getting better from dmso. so is it unusual that i'm not feeling any different?

    i'm also not really responding to any of my other medications. he's changed them and put me on different things, yet i do not notice any change at all. nothing.

    oh and one more thing...what do you guys think the next course of action is after dmso? i've already tried a cystoscopy/hydro, bunch of different medications, diet, dmso.....what comes next??

    thanks
    [SIZE="1"]
    I've tried:
    Ditropan
    Detrol LA
    Levbid
    Prelief
    Elmiron
    Elavil
    Vesicare
    Cystoscopy/hydro
    Sanctura
    Enablex
    dmso and heparin instills
    Interstim

  • #2
    DMSO never worked on me. I went through 3 or 4 sets of treatments. After that didn't work, my doctor sent me to another uro that specialized in people with moderate to severe IC and suggested that I investigate the interstim implant. I had 3 hydros as well. When I went to the new uro. I feel in love with her immediately. She took alot of time with me and said that she would never do DMSO on me again. I went through numerous tests before it was determined that I should try the interstim including biofeedback, physical therapy, etc. The interstim works well on me most of the time. I used to have a flare at least 1 time a month even on heavy pain meds, but now I only have one about 1 to 2 times a year.

    I hope you find something that works for you!

    T83

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    • #3
      I cant help you as far as the DMSO. My one urogyne wanted me to do these, but I read up on them and did not feel comfortable with doing them. I am now going to a new urogyne who does a different type of instill using heprerain,lydocaine,steroids, and biocarbonate. She said that she did not have much luck or results with using DMSO. She said that almost all her patients fare very well with the heperain,steroid,lydocaine,biocarb instills.
      I pray they work for me.
      Jen

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      • #4
        I did DMSO. I had to do one a week for 6 weeks and then one a month for 6 months. There were times it did make a difference but I am not in a hurry to do it again. The difference just wasn't significant enough to me. At the time I knew little to nothing about IC or DMSO. Had I know more I probably would have questioned the doctor more before doing them.

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        • #5
          I started out with one DMSO every week for a month, then once every 2 weeks for another month, and now I have them done every month. My last one should be April. I told my uro that I do not see that I have had any improvement with the DMSO. It burns like crazy when I pee too. He wants me to continue until April.

          What I think has helped me is Elavil at 10 mg which I started 11/30/06 since I was in a major flare for 4 months with constant urethral burning. Only now within the past month, I have become extremely hungry and wanting to eat all the time. I have always been petite so gaining weight is not what I want. I stopped taking Elavil for 2 days, I don't have cravings within those two days, but my urethral burns a little.
          bunnykinb

          6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

          tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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