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  • #1

    Has anyone else...

    I Was "diagnosed" with this illness about a year ago.
    But before that diagnosis I was forced to drop out of college twice because of being unable to stay in a classroom for more than 15 minutes without having to go to the washroom. And because The symptoms appeared about half way through school I am still on the hook for all of my students loan. Being out 10 grand for nothing at all is not the most wonderful feeling.

    At first the classic UTI and then OAB. The medications prescribed did nothing.
    then a whole bunch of x-rays and ultrasounds and nothing.
    Eventually all the money I had saved up ran out and am now living with my parents and the only Urologist in town is unwilling to make a definitive assessment of IC so I can't go on disability. And to be honest I really don't want to. I feel like doing that is giving up on the chance of a normal life.

    I guess symptoms are the thing to give? Um I really don't know how to explain I get pain then urgency or the other way round. I can't really tell anymore. I pee every hour when I am not stressed every 15 when I am. Which when getting a Job is not a positive attribute. I strain to pee alot. usually in the morning is the worst and I have the urge to pee every 4min when I lay down to go to bed. and 2 time minimum I have to get up when sleeping. I've stopped drinking anything for fear of it might make me pee more.

    Also people on this site talk about flares, I have no idea what that is. I just have consistant pain and urgency.

    This has also reduced my social life to nothing. I don't wanna go anywhere because I have to pee all the time and I don't wish to hinder those around me. so I have become a voluntary hermit so as not to drain society.

    I've Tried antidepressants, Hydro distension, various other meds that have passed and I have forgotten there names. So far I have had moderate help with muscle relaxants (Baclofen). And the Doc wants me to do the DSMO thing. but with all the different things that they have tried on me I'm starting to not care what they tell me to do. To be honest I'm starting not to care at all about anything anymore.

    Anyways I figured I'd post this to see if there is something I missed in all of this and I can get sage advice to save me from this terrible disease.
    Thanks for reading my sob story

    Mike,


    "I wish this had never come to me, I wish none of this had happened."

    "So do all who live to see such times, but that is not for them to decide. It is up to you what to do with the time that is given to you."
    Frodo and Gandalf
    Last edited by endofmyrope; 07-18-2011, 09:40 PM.
    Tags: None
  • #2
    My first bit of advice, and most ICers on this board agree, you should try the IC diet. Have you tried that yet, girl?
    -24.

    -Started having symptoms in May 2009.


    -Doing pretty well on diet alone.

    Comment

    • #3
      to the IC Network family. From the treatments you mention, it does sound like your doctor feels you have interstitial cystitis.

      I totally agree that if you aren't following an IC diet, today is a good day to begin. You'll find the link to the latest food list in my signature below. You'll also want to be sure to drink 6 to 8 cups of water daily to help keep your urine diluted.

      And --- please --- don't strain. Straining will make the discomfort worse. There are some medications that will help relax those muscles to make it easier to urinate. The ones that come to mind are hytrin, cardura, and flomax --- I know there are others.

      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

      • #4
        Well I feel I need to respond to the most important thing there...

        Girl?.... I'm male.

        I have tried the diet. It did nothing actually For a few weeks I was on nothing but bread and water and it did nothing to ease my symptoms. I could eat pizza have coffee and soda and drink alcohol and it wouldn't change the number of times I needed to pee.

        I will try to drink more water

        But I also forgot to mention That My bladder is apparently 1/2 the size of a normal bladder according to my doc. And after the distentsion I bled alot. But no ulcers or signs of irritation and that he wants to put me on the DSMO stuff then at the end of the treatments Stretch my bladder out with a hydro distention immediately afterwards to see if he can make my bladder "bigger" he equated it to yoga...

        Sorry I wrote the first part at 3:00 after not being able to sleep
        but thanks for the response,

        Mike

        Comment

        • #5
          It does sound like your doctor has a plan at least worth considering. And with a name like Mike, I thought you were male --- my oldest son is a Mike.


          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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