Announcement

Collapse
No announcement yet.

My turn now

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

  • 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

  • #2
    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.
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

    Comment


    • #3
      It sounds like a second opinion would be a good idea.

      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


      • #4
        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

        Comment


        • #5
          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?
          Kim

          Diagnosed August 2001

          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

          *****************************

          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

          Comment


          • #6
            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.
            God grant me the serinity to withstand the days ahead!!!

            My myspace link...
            www.myspace.com/patricia_luvs_matt


            Patricia

            In Memory of My Father (Lawerence) 1/25/2007

            Procedures:
            Interstim Sept 2001
            1st InterStim Removal May 2005
            2nd Interstim Implanted May 2005
            2nd InterStim Removed March 2007
            Hysterectomy 1999
            Tubes Tied 1997
            C-Section 1996


            Me and my kids


            Taylor (my daughter) Me and my daughter My son Cody and Taylor

            Comment


            • #7
              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.
              Hugs,
              Tracey
              How do you eat an elephant? One bite at a time...

              Harry arrived 2/23/09!



              *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              IC Diet Cheat Sheet:
              http://www.ic-network.com/diet/2009icdietlist.pdf



              Dx's:
              IC dx'd Nov 2004
              Lymphocytic Colitis dx'd July 2005
              Possible IBS
              Current IC Meds
              Vistaril 25mg in the evening
              Previous IC Meds taken:
              Cystoprotek - 2 caps 2x's a day
              Elmiron, 100mg 3x's a day
              Ditropan, 5 mg 3x's a day
              Others:
              Wellbutrin 150mg 2x's a day for Anxiety/IBS
              Pepcid 40mg a day for GERD
              Zytrec for Nasal Allergies
              Align Probiotic daily for IBS

              Comment


              • #8
                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.
                Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                Wishing you happiness and good health, and all the best out of life.

                Peace, Carolyn
                ___________________________________________________

                Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                On the Beach with IC

                Comment


                • #9
                  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.


                  Symptoms since '86 starting with frequency(told I had a small bladder)
                  Diagnosed with medium IC in 2004 when pain started

                  Medications:
                  For IC Elavil 50 mg - Atarax 50 mg - Fentanyl 25 Patch replaced every 72 hrs

                  For HBP Norvasc 5mg -Diovan 320 mg

                  For Depression Wellbutrin XL 300mg

                  Sinus Problems Flonase 2x daily-Alegera D when needed

                  And Now Fibromyalgia


                  Have Tried Elmiron (made me sick and hair loss)
                  DMSO and Heparin instills no help
                  All and every urgency pill
                  Trileptal, Neurontin, Tramdol did nothing
                  Cymbalta which made me dizzy and flushed
                  Lyrica gave me night terrors each night a different family member died very vivid now I know how they got the name night terrors

                  Comment

                  Working...
                  X