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  • #1

    Suspicion confirmed IC

    I went to see my family doctor today. He was straight forward and said that I have IC. I had so many questions about what the urologist said to me. My doctor suggested that I got an second opinion. He admitted that doctors don't know how to threat IC. He was honest about that. That is what I appreciate in him.

    Tomorrow there is a day where IC patients come together to talk with each otter.

    I think I am still in shock. I don't feal anything at the moment. I'm not angry, I'm really calm.
    I know I wil have bad days, today was one of those days. But I want to make the best of my life and enjoy.

    And I know I'm not alone. And I get support here!!

    Inger
    With love
    Inger

    History:
    As a child I had many UTI's wich I often had to go to a hospital
    Since oktober 2010 I got bad pain after a surgery.
    In februari 2011 I had an hysterectomy.
    April 2011 diagnosed with Urethrotrigonitis and Leukoplakia in the bladder.
    May 2011 diagnosed with IC
    Currently on:
    Gabapentine 3x 300 mg
    Ibuprofen 3x 600mg
    Amitprityline 20mg bedtime
    And 2 times a week installation with Oxybutinine 50 mg
    If necessary I use Tramadol 100mg
    I also used:
    Elmiron 3x 100 mg
    Vesicare 1x 10 mg
    Amitriptyline 30 mg bedtime
    Tags: None
  • #2
    Many doctors DO know how to treat IC!

    Hi Ingor69....

    You probably do need to get another opinion, but be sure to get an appointment with a doctor who knows how to treat IC. There is an "art" to individualizing the treatments, but just like you wouldn't go to a rookie heart surgeon for a bypass operation, you want to go to someone who has treated thousands of IC patients. Check out the link here under "Patients" above for the "Find a Medical Professional." We have a list of many highly qualified and compassionate physicians!

    Hugs to you............you will get help, I am sure of it.
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author


    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........


    Other IC Diet Resources:

    IC Diet Webinar
    IC Diet Website
    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter

    *Let's Connect!*

    Comment

    • #3
      Hi Julie,

      Thank you for your advice. I will get an second opinion. I have an appointment next monday.

      Regarding a specialist there is a clinic in the Netherlands, where I live, Amsterdam. I called them already and I have an oppointment there in May.

      I've read a lot. And de treatment I'm getting is not helping. And it's doing nothing for the pain. I'm going to call my urologist for pain medication. My family doctor subscribed met Ibuprofen 600 mg.

      Hugs back to you.

      Inger
      With love
      Inger

      History:
      As a child I had many UTI's wich I often had to go to a hospital
      Since oktober 2010 I got bad pain after a surgery.
      In februari 2011 I had an hysterectomy.
      April 2011 diagnosed with Urethrotrigonitis and Leukoplakia in the bladder.
      May 2011 diagnosed with IC
      Currently on:
      Gabapentine 3x 300 mg
      Ibuprofen 3x 600mg
      Amitprityline 20mg bedtime
      And 2 times a week installation with Oxybutinine 50 mg
      If necessary I use Tramadol 100mg
      I also used:
      Elmiron 3x 100 mg
      Vesicare 1x 10 mg
      Amitriptyline 30 mg bedtime

      Comment

      • #4
        Hugs to you...
        I am in shock as well. I want to live my life to the fullest and just be happy. It's just so difficult now.
        Widowed at 44...and now IC!

        Comment

        • #5
          Sadly, ibuprofen is a problem for many people who have interstitial cystitis.

          It's good that you have an appointment for a second opinion.

          Sending warm healing thoughts,
          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

          • #6
            Today I had an appointment for a second opinion. I didn't give me any more information. and he thinks I have an over active bladder. I have to keep a micturition dairy. And he gave me medicine to relax the bladder, Vesicare. And he wanted to test for an UTI. I have another appointment in three weeks. He doesn't think it's an UTI. But it's to rule out an UTI fore sure.

            I also did call my own urologist. He also wanted to test for UTI. And I have an appointment with him next wednesday. I want to have something for the pain. I have a really burning sensation. And pain in the kidney area.

            Like all IC patients I have still a long way to go. It's a neverending story.

            I went to a meeting for IC patients saterday. It was emotional but I learned à lot about IC. There where three urologists present who specialized in IC.

            I will fight my battle to get the best treatment. And antibiotics isn't the best treatment I can get.

            Love
            Inger
            With love
            Inger

            History:
            As a child I had many UTI's wich I often had to go to a hospital
            Since oktober 2010 I got bad pain after a surgery.
            In februari 2011 I had an hysterectomy.
            April 2011 diagnosed with Urethrotrigonitis and Leukoplakia in the bladder.
            May 2011 diagnosed with IC
            Currently on:
            Gabapentine 3x 300 mg
            Ibuprofen 3x 600mg
            Amitprityline 20mg bedtime
            And 2 times a week installation with Oxybutinine 50 mg
            If necessary I use Tramadol 100mg
            I also used:
            Elmiron 3x 100 mg
            Vesicare 1x 10 mg
            Amitriptyline 30 mg bedtime

            Comment

            • #7
              For a few days the pain was reasonable. How ever from last tuesday it's going down hill.

              I went to see my urologist last week because I had a flare. I got other medication (Tamsulosin). But it hass no effect.

              Today the pain is really bad. I took a Ibuprofen, but thats not doing anyting. I can't sit anymore. The pain in my back is killing me, as well as the burning sensation.

              My urine will be checked for UTI. My urine is not clear. I saw pyuria in my urine. I called again today, and the will call me back.

              I don't know anymore. If this continues I can't work anymore and I have to call in sick.
              With love
              Inger

              History:
              As a child I had many UTI's wich I often had to go to a hospital
              Since oktober 2010 I got bad pain after a surgery.
              In februari 2011 I had an hysterectomy.
              April 2011 diagnosed with Urethrotrigonitis and Leukoplakia in the bladder.
              May 2011 diagnosed with IC
              Currently on:
              Gabapentine 3x 300 mg
              Ibuprofen 3x 600mg
              Amitprityline 20mg bedtime
              And 2 times a week installation with Oxybutinine 50 mg
              If necessary I use Tramadol 100mg
              I also used:
              Elmiron 3x 100 mg
              Vesicare 1x 10 mg
              Amitriptyline 30 mg bedtime

              Comment

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