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need help, please

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  • need help, please

    I'm not sure if I'm posting this in the right place...but here goes.
    About ten years ago I was diagnosed with IC by a doctor who didn't know what else to do for me. I vaguely remember some episodes of urgency & burning with no infections. I was given no treatment, just some Urimax to help. I've had no issues with this since 2002 when I became pregnant with my 9 years later, after pushing a couch with my leg, I think it's back. It's been 3 weeks of I guess on & off urethral spasms. No frequency or pain in my pelvic region. I do have IBS with constipation. I can't get in to a new urologist for 2 more weeks (the 1 I just saw didn't even examine me)
    Does this sound like IC? or should I be thinking of something else?

  • #2
    Hi! Wecome to the board!

    I have IBS-C too and if I even miss one day of not having a BM I totally feel it in my urethra, it feels like it pulses, throbs etc. It does increase my frequency too probably because of the pressure. I take lots of magnesium to offset the constipation which works for me.

    I have to admit I do think its funny, odd that the uro you just saw didn't do a pelvic exam and talk about testing maybe. What did he/she say you had?

    Just a thought but you also mentioned you felt it after pushing a couch with a leg? Do you think you could have pulled a groin muscle?

    Also, its not unusual for ICers to go into remission when they are pregnant. You are lucky it lasted so long! In early stages of IC there are periods of no symptoms at all but clearly you had a super long remission!

    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link:
    AUA 2011 Guidelines to diagnosing and treating IC overview-
    AUA 2011 Guidelines to diagnosing and treating IC PDF:
    Great treatment flowchart on page 19 of the pdf


    • #3
      I thought I had pulled a muscle, as it started with a pressure in my groin that radiated to my legs, it wasn't spasms then...just an uncomfortable/tingling feeling. Gyno saw nothing, & the urologist didn't even listen, just said urine test was clean & it was urethral syndrome. had my awful flare the next day & went to er...they did pelvic & pap smear, everything was clean...said it was dysuria. All the uro gave me was urelle (didn't work) & vesicare for overactive bladder(which I don't believe I have, only use bathroom maybe 6-8x a day) my gp is sending me to another uro...she thinks it might be ic since I recieved that diagnosis before....but, I'm not sure


      • #4
        I'd ask your urologist or gynecologist to look into pelvic floor dysfunction, especially since this appears to have started with a muscle issue.

        You could also try the IC diet to see if it helps. If it does or doesn't - it gives you another piece of information to share with your doctors.

        I'm sorry you're feeling bad again. What gives me hope is that if you had such a long remission before, the chances are good you could have one again.

        Hang in there & get second/third opinions until you get answers (and a treatment that helps!),

        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!