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has anyone worsened permanently with DMSO?

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  • #1

    has anyone worsened permanently with DMSO?

    I have severe IC and have tried almost everything, including surgical interventions (botox and interstim). I am now attempting DMSO (I tried heparin before) in hopes that it will do something, but I have had four instillations and all I have experienced is a worsening of symptoms. Whereas before I had some relatively ok days, now they are all bad to the same degree. I am wondering...

    Is it worth continuing in hopes that I will get some relief (Moldwin said if it doesn't work after 4 it's time to quit).

    Has anyone been negatively affected by this treatment in the long-term?
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  • #2
    When I did DMSO it did cause increased pain for the first few instillations. I was ready to say "no more" when one morning I woke up and realized I had slept the night through. That was enough to convince me that it was going to help.

    I have not heard of anyone having permanent damage if the DMSO is diluted so only 25% or less of the solution is DMSO.

    Donna
    Stay safe


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    • #3
      My experience so far is the same as yours, and I just have one more to go. My bladder is so outraged at the moment. I contacted my Urologist's nurse and mentioned that my symptoms are worse and she informed me that this is quite common. Her advice to me in my particular situation was to continue since I only had 2 treatments left to go (at the time I spoke with her). She said from the patients they have treated, they have found it quite often does aggrevate the bladder temporarily and it isn't until up to 6 months later that people start to show signs of improvement. Keep in mind this is based on the findings from the clinic I go to.

      I would suggest that you ask your Urologist what they suggest that you do, because I think everyones treatment plan varies from one person to the other. If it is really causing you a lot of pain then maybe they might have other alternatives for you, or could suggest pushing forward as well. Best to advise them though of how your feeling.

      My friend was worse during her entire DMSO treatment and it wasn't until much later that she noticed a great improvement and went into remission for 3 years. She was also treated at the same clinic that I am going to. This isn't the case for a lot of people but I'm going to hang in there for the last treatment in hopes that I see improvement.

      It is such a controversial treatment and many people have had horrible experiences with DMSO, while others have had fantastic results. I think while we go through these treatments that cause us so much pain we really do want to hear from people that it has helped because it gives us hope to continue on. I am also waiting to hear from some people with positive results.

      Good luck

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      • #4
        Thanks for your reply, I appreciate hearing about your experience. It's promising that people have experienced relief that long after the instillations. Like you I am planning on continuing with the treatment, mostly because it is pretty much the only thing I haven't tried yet. Good luck to you, I hope you find relief soon.

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        • #5
          I'm running out of options as well so I don't have much to loose. I would much rather take the chance on the hope that it will improve. If it doesn't then at least I can say I gave it a chance. I do completely empathize with you, as my bladder this morning is quite angry with me after yesterdays treatment. Good luck to you as well, and our bladders can be cranky together while we both endure our final treatments

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