Announcement

Collapse
No announcement yet.

My turn now

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • TerriT
    replied
    I would find another doctor too. My primary doc is the one who told me he thought I had IC after a couple of rounds of antibiotics didn't help. I feel lucky that he knew right away that I had IC. He refered me to a uro who did an quick scope and was pointing out to his intern a red area in my bladder.
    Then he sent me on my way. My doctor called him and told him I needed treatment so he (actually his PA) did a round of heparin instills and put me on Elmiron, which I had to stop because it was making me ill. As I walked out on the last day I asked about pain meds because my primary had been writing scripts for vicoden but wanted my treating doctor to do it. He looked at me and said "I don't know why you would need that?" I came home and looked on the internet for uros in the Portland area who knew more about IC. I was lucky to find a uro who had participated in a drug trial for Elmiron. ( I told my primary what had happened and he wrote me another script and agreed that I needed to go elseware. My new ( and current uro) did a hydrodistention and confirmed that I had IC. He did a round of DMSO which unfortunately didn't help me. I asked him the first day about pain meds and he refered me out to a Pain Clinic where they put me on a Fentynal Patch because since I need pain relief 24/7 he said it was better go keep the medication at an even keel not up and down like pills do. My uro also put me on the Elavil and Atarax. After trying everything available he told me to come back in a year, sooner if I felt I needed to, or if one of us heard of a new treatment.

    If you have to convince the uro that you have IC, I don't know if you can trust them to give you the medical help you need.

    Leave a comment:


  • Berkshire Road
    replied
    As Traceann said, go running in the opposite direction. There must be some other Uros in your area, and if it's at all possible, you should be open to the idea of traveling a bit of distance to get a good doctor.

    I was told four years before my diagnosis, by the Head of Urology of a major research hospital, that I did not have any symptoms of IC (he did not even ask me about frequency/urgency, just said the pain was in "the wrong place."). He refused to even test me. I went through four more years of torture, including an unnecessary operation, before I found the right doctor with the right attitude and started the right treatments. My doctor is 60 or 70 miles away; but my father is always willing to drive and it is SO worth it.

    I'm sorry you ran into a bad uro, but please don't give up. You need to find the right doctor for you, and I'm sure that you will. If only it didn't have to be so hard on us!

    Good luck; I'll be thinking of you.

    Leave a comment:


  • traceann
    replied
    Oh yeah, go running for another doc! LOL My gyno was my primary phys for treating my IC, granted he didn't know too much about it, but we learned together and worked as a team.

    Leave a comment:


  • patricia1
    replied
    I had a simliar experience with a uro. My gyno was the one who thought about IC to start with. He sent a note to a uro to test me for it. The uro looked at me said I was to young to have, and even if I did I wish I did not because there was no cure for it. No testing did he do. It took another 2 yrs and several more doctors before I got my postive PST test done and have someone listen to me. I have that the younger the uro's are the more experience they are with IC and the older uro's just dont believe in the disease.

    I would try and find another doctor that will treat your IC and will listen to you.

    Leave a comment:


  • vm
    replied
    I was picturing a guy in his mid-sixties. Can your GYN continue to treat you for IC or is she not comfortable doing that?

    Leave a comment:


  • Maride
    replied
    Originally posted by vm
    So your GYN did a potassium sensitivity test and it was positive, but now this uro says you do not have IC? Is the uro an older man? Just curious - sounds like maybe he is.

    He is about my age (44) but he acts like he is the only Dr in the world. I wish I had a female uro near by. I will search around.

    Maria

    Leave a comment:


  • ICNDonna
    replied
    It sounds like a second opinion would be a good idea.

    Warm hugs,
    Donna

    Leave a comment:


  • vm
    replied
    So your GYN did a potassium sensitivity test and it was positive, but now this uro says you do not have IC? Is the uro an older man? Just curious - sounds like maybe he is.

    Leave a comment:


  • Maride
    started a topic My turn now

    My turn now

    I went to visit an urologist for the first time since my diagnosis in Oct. by my Gyn. He laughed and said there is no way I can have IC. He took my history and insisted I don't have it. I got mad, because at least she did a potassium tolerance test to say I have it, but he did nothing to proof I don't. He sent me home for some medication for urgengy (which I don't have) and a kit to do a cytology test. I see him again in 4 weeks. I am tempted to see someone else, but unfortunatelly, living where I am (northern NY) we have not too many physicains to select. Thanks for letting me vent.

    Maria
Working...
X