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  • Newly Diagnosed, Odd Symptoms

    Hello there. My name is Hayley, and I was recently diagnosed with IC. So far, I have had one treatment with DMSO, and am supposed to have this treatment every 1-3 months as my case is, according to my doctor, very severe.
    For some reason, I don't experience a lot of pain with it though, and I never have. The pain I feel in the pelvic region is located on my left side, and is very sharp at times, generally when I've been sitting for a long while. The other pain I feel is when my bladder has been full for a bit and I have, for one reason or another, not went to the bathroom-- In that instance, nausea and sharp pains follow soon after. Then there is stinging in the urethra when I pee occasionally, and its really bad when I pass what appears to be slothing of my bladder.

    Yeah, that's a bit terrifying. I'm glad my doctor is confident and cheerful about it all. I was told to take pyridium 4 times a day, but I realize its bad for my liver-- I'd much rather tolerate the little bit of pain I have.

    Oh, I also have chronic bladder leakage. I know this isn't a typical symptom of IC, but if my bladder is very injured, it makes sense I would assume for it to spasm and release fluid.

    I suppose I'm here asking if any of this is typical with anyone else, and also just to say hello. I know I'm going to get through all of this... Especially once I figure out my diet plan.

  • #2
    Hello and Welcome, I too have severe pain in my right "ovary" area and my inner thighs when I'm in a flare, small leakage starts everyday after my initial urination in the morning. BUt as far as the burning I don't experience that. I hope the DMSO treatments help you.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily

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    • #3
      Originally posted by greeneyes View Post
      Hello and Welcome, I too have severe pain in my right "ovary" area and my inner thighs when I'm in a flare, small leakage starts everyday after my initial urination in the morning. BUt as far as the burning I don't experience that. I hope the DMSO treatments help you.
      Thank you so much. I feel a lot better after hearing that. I appreciate it, I'm sure they will.

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      • #4
        Hi, Hayley ~ Welcome to this wonderful site where you definitely will hear from others and generally someone is always here to just listen, offer advice or share experiences.

        I generally have pain with my urinating and I have also been told I can take the Pyridium 4xDay as needed. It has really helped me and like you, since I'm aware of the possible side effects, take it when needed.

        I also have instillations of heparin, kenalog, lidocaine, bicarb and have had them anywhere from 1xWeek to 3xWeek, then as needed after I got my sypmtoms under control. I'm not familiar with the DMSO although I know there are a number of IC'ers who are and will probably reply.

        The Diet has become part of my lifestyle and I do believe that the combination of all my treatments have helped tremendously.

        I know in the beginning of my symptoms and diagnosis I was a total mess and completely confused but just as I was encouraged to hang in there, I am now here to offer you the same.....Hang in there and you've definitely come to a great site for comfort, companionship and advice.
        Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

        11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
        8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
        8/2010 Surg gallbladder
        TREATMENTS (updated 4/15)
        IC Diet since 8/2009 (Able to vary 4/15)
        Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
        Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
        Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
        *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
        Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
        PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

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        • #5
          Thank you. It really is a difficult process, moreso than I expected originally. I don't have a lot of support from my family considering they don't understand it-- Which is to be expected. Its nice to know there are very kind people here.

          I'm excited knowing that I can get these symptoms under control. I've taken the first steps in fixing my diet-- Though it still needs a lot of work.

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