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help i feel like i am dieing

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  • help i feel like i am dieing

    My name is Brigitte,

    I am 21 yrs old and i have had two cystcopy's, one hydro and countless tests and pain meds such as neurotin( an elepisy med and detrusitol which relaxes the bladder, both doctors don't think i have ic, but i have some symptons. I get attacks when i get my period which my bladder, spinxter and urether all push down trying to make me go to the toliet and i have no control. I constantly feel the need to go to the toliet, but the pain varies on bad days like now i am so depressed, the pain is uncontrobable, i think about ending it all, but i could never as i am a christian and i love go and my family too much, but i am scaaird of myself. I have had an enjection depo valperviro to stop my periods as i thought it would mke it better by now i am in more pain then you could ever imagine or mabye you could. The doctors say it is some kind of urethral syndrome caused by pain sent from the sacural nerve. IT IS RUINING MY LIFE, i am lonely aand sad, has any one heard of a colsutomy where the stoma bag is put on the inside and has any one had interstim implant, Well thanks for listing to me whine, i guess the best thing is I AM ALIVE!

    BRIGITTE FROM OZ <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> [img]frown.gif[/img]
    Brigitte Rideout

  • #2
    I'm so very sorry you're having such a difficult time. I do understand. Have you read the information in the Patient Handbook? You'll find it on the pull-down menu at the top of this page. There's information there on diet --- and even if it turns out you do not have IC, some of the diet information could be very helpful to you.

    And please don't give up. It may take time to find what helps you, but one day you will feel better.

    Warm hugs,
    Stay safe

    Elmiron Eye Disease Information Center -
    Elmiron Eye Disease Fact Sheet (Downloadable) -

    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:


    Diet list:

    AUA Guidelines:

    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.

    Anyone who says something is foolproof hasn't met a determined fool


    • #3
      Hi Brigitte,

      Please see my response to you in the bladder removal board. I didn't realize that you were from Australia.. so I'd be happy to meet you in the chat room instead if that would help.

      Now, let's see if I can put this in perspective. Having IC means that you have small wounds in your bladder that are struggling to heal. So, it's important that we consider this more of an injury than an illness. "Wound" care is a theme that I'll come back to frequently. So, caring for wounds in your bladder is very similar to caring for wounds on any other part of your body.. with a few key differents.

      So,whats the first thing you'd do with any wound any where. Clean it, of course. So, drink water! Just your normal 6-8 glasses a day.

      The second thing that you'd do with a wound is put a bandaid on it to protect from the elements, from getting infected or irritated. And. this is where the bladder is hard. We can't put a physical in there, so that means that those wounds are going to be irritated (or not) by what you eat.

      I will say this quite bluntly. I've spent thousands of hours working with IC patients in the last nine years. Nine times out of ten, when a patient calls us crying in pain.. we discover a very simple cause. They usually confess to drinking coffee, or soda (Just this month, one called sobbing who was drinking 10 ginger ales a day... the other was drinking 6 cups of coffee a day) or something else acidic that is irritating those wounds and causing those excruciating flares.

      I mean, think about it. IF you poured acid on a wound every single day, what would happen to it? Not only would it not heal, it would get worse. Even one cup of coffee in the morning will set you up for a day, and night, of pain... especially if you're already in a flare.So, make sure that you're not irritating those wounds further with your diet. Check out our handbook for more info, especially the top ten list of forbidden foods.

      Now let's move on to treatments. Most doctors recommend a triad approach to treating IC:

      (1) A protective coating ... aka chemical bandaid... that will cover up those wounds.
      (2) An antihistamine (hydroxyzine) to reduce the inflammation in the bladder and pelvis.
      (3) If pain is an issue, the use of an antidepressant to help downregulate those neurons.

      In your case, because your pain is primarily urethral, there could be other causes that might be worth exploration. I went over those in my response to you in the bladder removal board... something as simple as bikeriding... jamming your crotch on the bar of your bicycle.. etc. etc. Check that out too!

      I want you to remember that there is lots of hope. You're early in the diagnostic process... so don't jump to harsh conclusions. Most patients see great success by following many of the strategies above.

      WE do have an IC resource center just for Australia.. which you can find at: There are also two support groups down there that could definitely offer you lots of support, encouragement and info from those who are "in the know" about life in Australia.

      Take a few deep breaths.. rest... start reading and educating your self.. and, most of all, call those support groups! If you have any trouble contacting them, let me know!

      Jill O.
      Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

      Looking for books, magazines & reports on IC? Please visit the ICN Shop at: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

      Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.


      • #4
        Hi Brigette,

        I'm so sorry that you are feeling so terrible at present. Hopefully, with time and treatment, you'll start to feel a lot better. To reiterate what Jill is very important to follow the diet, especially while flaring. Where in Aust. are you from? I'm originally from Adelaide, and have been staying in contact with a nurse who is doing her PHD on pain and interstitial cystitis. She also runs a support group and has even given me her recommendation of a doctor who seems to be on the ball with ic. In Adelaide, of course. Anyway, please stay in contact, and have hope (things should get better for you).


        • #5
          I am 22 years old, and I understand your misery and pain. I don't know what you have tried yet for your IC? Basically, I have been on every medication, every bladder instill, and every device(Including the Interstim), and I still am the same. The Interstim did not work for me because my main symptom is pain. Although the Uro. did warn me, that there is a great chance it would not relieve my pain, I still wanted to try EVERYTHING before I considered having my bladder removed. I see a pain specialist to help me deal with the pain, and I am on other drugs to help deal with anxiety and panic attacks. Please let us know what you have tried so far in helping us better know what to suggest for you. I know that you will have a difficult time trying to find and dr. that will remove your bladder. I have been to several that have flat out said "no". I understand why, but they don't live in the horrible pain and pressure and spasms that I live in everyday. Please keep posting, I want to know how you are doing.

          Alisha <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />


          • #6
            You must hang in there, Brigitte. Most of us on this board have had some really bad days, and some of us have felt desperate at times. We have all survived this disease. You will find a therapy that will help you. There are many out there. And something will work. Take one day at a time. take one step at a time. Each step will lead you to the therapy that will help you...You must never give up. Don't ever let the disease win...Celeste