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Had my 2nd DMSO>>>OUCH!!!!

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  • Had my 2nd DMSO>>>OUCH!!!!

    Hi all,

    Well I had my second DMSO today. i had one last Friday and had a very unproductive, painful weekend. I told my GYN I didn't get any relief and he said perhaps it won't be a good treatment option for me and did send a referral to the pain clinic.:woohoo:

    IC is so tough to deal with. My heart goes out to all of you that have been suffering with this disease for multiple years.

    Prelief doesn't seem to help..it makes me so bloated and gassy

    I seem to be tolerating the Elmiron but I definitely get very crampy after meals and i am attributing this to the Elmiron.

    Love to all,
    [

    Mimi~

    Currently battling:
    Migraines
    IC
    Panic attacks/Anxiety Disorder


    Current Treatments:
    Pain Meds and Anxiety Meds
    Gentle Physical Therapy
    Yoga
    Heating Pad~my best friend
    Lots of hot baths w/ Epsom Salts & Baking Soda
    Tens Unit
    Prayer

  • #2
    Mimi,
    I had my second DMSO treatment today as well. I still don't know what I think about them yet but I found that over the counter AZO really helps with the discomfort from the DMSO. It's a bladder pain pill that you can get at any pharmacy. Hope you have good sucess with the pain clinic.
    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


    • #3
      Hi Mimi & Christine,
      The first several DMSO treatments are notoriously painful, as the bladder cells are releasing histamines. Usually, with each treatment in the series (usually 6-8 at once a week), the cells have less & less histamine to release & the bladder has less of a reaction. That's why they usually say that if you can tolerate them, to assess their effectiveness between the 4th-6th treatment. For me, the improvement showed up about 10 days after the 6th treatment.

      That said, the home instillation treatments wound up working out better for me, so you might consider those as Plan B, if the DMSO doesn't work out. (The DMSO treatments are less expensive, more readily covered by insurance & less frequent, which is why many urologists will try that first.)

      Wishing you better days soon! Hang in there---
      Kadi

      -------------------------------------------------------------
      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.
      ------------------------------------------------------


      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
      Source - Pinterest
      "


      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!

      Comment


      • #4
        Thanks Kadi,
        I am going to try to stick it out myself as long as I don't go broke paying the office visit copay each week (money has been tight).
        I think I would really prefer the rescue instills that I can do myself at home though just for the pure fact that I end up missing work if I'm having a bad flare and I would really like to be able to do an instill and possibly have so much relief that I can still go to work. Guess I'll see how it goes.
        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

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