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contradictions, treated as a drug seeker, severe pain

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  • contradictions, treated as a drug seeker, severe pain

    I'm 39 and was diagnosed w/ IC about 6 months ago by a urologist who said pain killer would clog his cath tube. Cysto, kidney check, and 3 out of 6 instillations. I couldn't go back.
    2nd urologist ran in the room, heard the word pain, condescendingly grinned, and ran out before I could tell her I can't DO painkillers because they make me puke, I want to pee! Gave me a lot of Pyridium without any instruction on amount at the door. (I researched and got 2 days of relief, big deal)She scheduled cysto and kidney check weeks away, but I cancelled it. She never even looked where I begged her to examine. No examination at all. She seemed so hurried and distracted. Not even listening. saying "yeah yeah, mm-hmm" while looking at her clipboard without me even finishing a sentence.
    Well, today I have an appointment with another urologist. The pain with urination is UNBEARABLE, makes me cry and I've birthed our four sons.Retention, straining, and pain have made me move college classes for next semester to online (my 4.0 is now in jeopardy because I run to pee during notes), cease pt observation that's required for my major, unable to even go grocery shopping without a poise pad. I'm now sitting in traffic and classes peeing in my pants like an 80 yr old woman and sleeping in diapers! Don't these doctors have an ounce of compassion... I considered the E.R. when I was urinating every 13 minutes or so all day Saturday, but I read that they're even worse.
    Cant use elmiron because I have bad colitis and have been bleeding 3 weeks now, off to gastroenterologist. The two diets combined leave me eating practically nothing. Organic nothing.
    Websites contradict about what's safe.
    Been on IC diet, using baking soda in tub, vagisel, evian water, almond milk, hot pack, etc.
    This is the rest of my life?
    Last edited by donna71; 04-18-2011, 05:50 AM.

  • #2
    Hello Donna and welcome to the ICN,

    Please don't feel this will be the rest of your life. You do need to find the "right" urologist or sometimes gynecologists can be a good resource for IC help. It can take some time to get relief but most IC patients do find that relief.

    Have you thought of asking to see a physical therapist? They might be able to help you with the retention problems. Also, maybe some of your meds for your colitis could be causing the retention problems. It might help to do some research on your medications and see if retention is a possibility with any of them.

    It isn't at all uncommon that we as the patient with IC have to be very proactive and do a lot of research on our own. The more educated you can be about your condition when you see a Dr the better, usually. There are some Drs that don't like it when patients do their own research. Those Drs get marked off my list quickly!!

    It can be very frustrating but please don't just accept that this is your life, it can and usually does get much better!

    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


    • #3
      thank you

      Oh, I've not been on any colitis meds in forever, but I'll be on atleast canasa suppositories now since Im bleeding so bad. I really don't like to take meds so it's ironic that I'd be mistaken for a drug seeker. I take an otc pill for a migraine, but I tough it out through anything else.
      Why were my awareness of treatment options and desire to urinate without a knife-like pain viewed as "drug seeking"...I had the unused bottle of loratab from eons ago in my purse to show her I cant even take mild painkillers (5.0). Im a motion sickness person.
      I want a doctor with less ego and more heart


      • #4
        It makes me sad when ICers have bad physician experiences. Have you checked the physician list on this site? If you scroll to the top of this page and click on Professionals you'll find a list of medical professionals who have been recommended by other IC patients.

        Warm healing thoughts,
        Stay safe

        Elmiron Eye Disease Information Center -
        Elmiron Eye Disease Fact Sheet (Downloadable) -

        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:


        Diet list:

        AUA Guidelines:

        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.

        Anyone who says something is foolproof hasn't met a determined fool