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New to this site this is my story.

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  • New to this site this is my story.


    I was diagnosed with IC one year ago. It began when I was only 16 years old. I was taken to University of Tennessee Hospital with massive bleeding during urination. I could not stand, sit, sleep all I could do was cry. In the ER I was taken immediately to a room where they stared injecting me with this fluid that show up under x-ray. They had determined that I had a serious UTI infection. They tried to tell my parents I may have been sexually active during the past month which cause my UTI infection.

    My parents knew better! I was a virgin and had never been with anyone. It was a pact I had made with myself and god I would never have relations with a man until I was married.

    Back to my story, at this point I wasn't having any problems, then the next morning I awoke to the horror of my first UTI.

    Off and on I continued having yeast infections. Then years later with the birth of our first child I had the began having more UTI infections. Another one at 17 another during my 8th week of pregnancy and then finally at least 3 times a year their after.

    I am 25 now and over the last nine years I have had over 25 UTI infections. Last year finally my Physician noticed the Urine tests were normal. After being seen by a UTI specialist I went through the testing and was confirmed I had IC. Well my first thought was Thank The Lord it has a name.

    After that I was sickened by the treatments that followed. Three times a week I had a bladder a wash for about a month. Then I began to catheterize myself twice a week. I prefer doing it myself for 2 reasons. 1-Its not as embarrassing and number 2-it doesn't hurt as much when I do it.

    I take Hyoscyamin----Hydroxyzine---Pyridium---and allegra. I have really bad allergies and I was informed that most IC patients have allergy problems that can induce the irritation of the bladder.

    Every three months I have my bladder distended. It puts my bladder in a state of shock for about three months then I go back for another one. It was working very well for a while then my last treatment failed. The only thing I disliked about the treatment was that I smelled like garlic for about 4 days.

    Well I was doing really well for a while but now I am always hurting. I constantly have bladder spasms and have begun having spasms in my bowel area again. My UR is baffled and hasn't one solution for me. I only eat what agrees with my bladder. Suddenly here I am again right where I started.

    I have taken just about everything out of my diet but even that hasn't helped. I don't know where else to turn. Its very depressing as we all know.

    I would like to know how everyone else deals with their IC. I know I am not the only one that has been through this. Its wonderful that their is a message board for us to speak freely.

    But I get very sad because I want to be active with my child and I am always in so much pain. My husband is very supportive, I am very lucky to have him in my life. He is a huge help to me when I am not feeling well. And I just hope everyone else here has someone like that too.

    God Bless Tara

    [img]confused.gif[/img] [img]rolleyes.gif[/img]

  • #2

    Welcome to the ICN.

    In your post you state that you have bladder spasms. Have you considered suggesting to your Uro about a antispasmotic drug to help with the spasms? Bladder spasms can cause pain so perhaps this may be an option for you.

    There are many antispasmotics on the market such as, Anaspaz, Ditropan, Ditropan XL in which ICer's take for pain associated with IC spasms.



    • #3
      I'd like to add another welcome to the IC Network. You'll find a lot of information and support here. Have you found the Patient Handbook? It's on the pull-down menu at the top of this page.

      There are many, many treatment options for IC. Like Diane, I find that antispasmodics work well for me when I have a flare. I do know tht it can take time to find exactly which treatments work best, but most of us do get there.

      You might try keeping a diary in which you record everything you eat or drink, along with activities --- if you do this for only a week or two you might find something that is causing added irritation. I know if I don't get enough to drink, it brings on a flare --- I take small drinks frequently.

      Sending healing thoughts,
      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