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  • Big app't. tomorrow

    Tomorrow morning I have appt. at local Hospital for another cytoscopy, with a different urologist than did my previous cystoscopies.

    He will also ask me about what effects I noticed after the 'lidocaine challenge' instillation they did on me a couple of weeks ago -- this is the part that I am quite apprehensive about. When he said that he was going to have me do that challenge/instillation, he said I'd absolutely know if it relieved pain or not, and 'that way we'll know if it [the pain] is the bladder'. But I can't say that the challenge/instillation has made a clear dramatic difference to the pain... so I'm concerned that he is likely to say the pain isn't the bladder. But it's gotta be, no? -- the difference between pre- and post-urination pain has been increasing significantly for me over past few weeks -- the pain wakes me every one to three hours. If the pain management (via opiates) isn't doing so well I'll be woken at maybe a 7 (on a 1-10 pain scale), and occasionally close to an 8-level pain, but after peeing it can drop to like a 6, often a 5, sometimes a 4 and it's even dropped to about a 3. How can that not be to do with the bladder?

    I suspect he will not want to do another lidocaine/heparin instillation if I can't say it made a difference - but I am leaning slightly toward asking him to do again because I am not certain about my observations.

    The first urologist diagnosed me in 2008 as having interstitial cystitis after seeing lots of scarring on the inside of my bladder during a hyperdilation (sp?). He did fulguration (cauterizing/burning). It didn't trouble me much at all or the next couple of years. In the fall (2010), after a completely different kind and scale of pain took me into ER, that first urologist eventually concluded that my current pain is not in keeping with IC. He said that the current pain must be coming from something else, he believed it not to be urological at all, and referred me back to the GP. So my big apprehension tomorrow is fear that the specialist will feel that it's not IC, and brush me off (which in Canada, means months of more waiting lists for someone else), and for me, months of more morphine and 24/7 sleeping because of the side effects). So I am very very apprehensive - hopeful too, for sure, but based on the past several months how things have been repeating, quite apprehensive - about tomorrow.

    Lisa
    Last edited by playethic; 02-24-2011, 08:19 PM. Reason: made unclear bit clearer
    ______
    Severe IC developed fairly quickly, autumn 2010.
    So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

    - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
    - Methadone 9 ml/day
    - Instillations:
    - 40ml Kenalog (steroid for inflammation) 2 x per
    week, along with rescue cocktail of heparin,
    lidocaine, sodium bicarbonate
    - 20ml Uracyst, monthly @ $100/per
    - Depo lupron injections for endometriosis, monthly @ $88/per

  • #2
    I wish you luck. Just remember to trust your body. Have you tried AZO yet to see if that does anything for the pain? Maybe try to get them too look for blood in the urine?
    • 27 year old student
    • Had symptoms since I was 5
    • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
    • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
    • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
    • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


    Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

    What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

    What didn't work: Elavil, vistaril (12/22)

    Comment


    • #3
      I haven't tried Azo -- when do you take it, and how much of a difference do you find that it makes for you?
      What's your thinking about blood in the urine -- if it's there, what might that mean?
      Lisa
      ______
      Severe IC developed fairly quickly, autumn 2010.
      So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

      - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
      - Methadone 9 ml/day
      - Instillations:
      - 40ml Kenalog (steroid for inflammation) 2 x per
      week, along with rescue cocktail of heparin,
      lidocaine, sodium bicarbonate
      - 20ml Uracyst, monthly @ $100/per
      - Depo lupron injections for endometriosis, monthly @ $88/per

      Comment


      • #4
        I hope today goes well for you. I'll be thinking of you.

        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

        Comment

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