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  • What to do when Hydro is negative?

    I had a hydro done in 2007. My Uro-GYN passed away a year later and I just got a hold of the operative report. It was all very technical but my new dr. who is a top IC specialist said the pictures looked like a normal healthy bladder and "the findings were more likely completely non-significant". He is sending me a referral to the pain management center now. I don't know if he thinks this isn't IC or if it just doesn't "show" in my bladder as severe. He said my positive response to Elmiron and my diet sensitivity definitely point to IC. I'm just curious if anyone else there is having severe symptoms and negative hydros?
    The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
    First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
    Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
    Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
    Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
    BABY GIRL 10/28/08 *** BABY BOY 7/8/11

  • #2
    I can't speak to what the negative findings mean as it relates to IC, but if it were me, I think I'd be asking for another cystoscopy w/hydro to see if there has been any changes. It has been 6 years, right?
    **************************************************************

    Experienced first symptoms in 2007
    Diagnosed with IC 6/13

    Diagnosed with PFD (Pelvic Floor Dysfunction) 8/13

    Medications: .5 mg. Ativan, occasionally for spasms

    Supplements: DH Aloe Vera capsules, 3 per day for maintenance and 6-12 per day during flares


    Following Strict IC Diet

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    • #3
      Thanks Lori. My current dr. didn't think it was necessary to put me through the pain of another procedure at this point since my symptoms are much the same. And I actually did have a cystoscopy in 2010 but I cannot locate the dr's report but it wasn't significant either. He had me do a voiding diary and after reading my initial operative report decided the pain clinic would be my next step. I should clarify he confirmed that I have tried almost every treatment option out there and that remaining on the Elmiron at the higher dose is fine. My only other options were participating in study drugs or botox (which he didn't think I was a good candidate for due to risk of retention). So now I sit a little fearful of what the pain center will have to offer. I get so worked up over this condition.. I am almost afraid of to try anything for fear it will cause me to worsen.
      The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
      First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
      Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
      Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
      Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
      BABY GIRL 10/28/08 *** BABY BOY 7/8/11

      Comment


      • #4
        You could do at least one visit with the pain center to see what they have to offer. I am seeing a pain management specialist and he has literally given me back my life. My pain is from a back problem, but I know that alleviating my back pain is at the same time helping me with any IC pain. If you don't like what you hear from the pain specialist, you can always back away and discuss other possibilities with your doctor.

        Warm hugs,
        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

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