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My Story

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  • My Story

    I have had IC for about four years now. Some of the treatments have been great others have done nothing for me. I have learned what I can do and what I can't do. I'm have been married 14 years and have three great children. My Husband and children understand what I have to deal with daily. Some morning are good while others are so painful I cry. I feel like I did when I had my monthly and I haven't had that since 1996. In the last year I had to go twice to the ER because I could not go to the bathroom,the first time the doctor told me in was in my head because the bladder does not feel pain, after my husband called my doctor they do what he wanted them do. But the doctor at the ER told my husband I just wanted pain meds.. I never ask for anything my doctor told them to give me something. The last time I went was last Monday and the ER doctor was very nice to me and said he knew I was hurting. He put a cath. which is painful for me because of all the treatments and part of it is closing off.
    I have been on every med. for IC and I have not had any luck all of them make me so sick,I'm lucky I have a great Doctor that understands and is trying everything for me. At this point I'm still in a lot of pain but they think if from all the stress I have been under,I lost my Mom in March and my Dad in June. I can tell you my bladder really went crazy if it could go wrong it did, Thank God for my husband, children, and some of my close couisns that were here to help me.
    Its nice to read the story about getting better just knowing that may be in my world one day is nice. Thanks for reading my story. I wish all of you the best grouphug angel

  • #2
    Welcome to the IC Network. You'll find a lot of support and information here. I suggest you read the information in the Patient Handbook at You can read about the various treatments and medications there.

    There are many treatments available --- I've had IC for 28 years now and there are still treatments I haven't tried. I do hope one day soon you will find the exact treatment that works for you.

    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


    • #3
      Welcome to the ic board i'm glad your husband is behide you on this and is helping you. bunches of hugs to you grouphug grouphug grouphug grouphug grouphug grouphug
      Medicine taken daily or as needed:
      1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
      2. MS.Cotin 100mg 3x daily
      3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
      4. Fentanyl 100 mg Change every 48hrs.
      5. Gentamicin 80mg install after each rescue treatment
      5 Leviquin 500mg self start as needed.
      6. Klonopin 1 or 2 daily as needed.
      7. Prosed/DS as 1 every 6hrs as needed.

      I have IC, but IC doesn't have me anymore!


      • #4
        grouphug grouphug grouphug Hi and welcome to the boards. there is alot of support and love and caring here. I hope someday that you will find a treatment that will work for you. I will be praying for you. Let us know how you are doing and keep us posted. grouphug
        Hang in there , There is hope.
        There is hope. Prayer works.

        Love, Debbie


        • #5
          Hi and welcome to the boards, my goodness you really sound like you went through a lot of stress and I know that makes it tough on the bladder. Glad that you have found us and joined in the messages, there are really a lot of great people in the IC family, you can always come here and get the support you need, especially when it is one of those down day we all get. Take care and look forward to hearing from you, Iris hi grouphug
          Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


          • #6
            Hello Lady hi , and welcome to the boards, and a family of wonderful people. Here you will meet many people, all with differing stages of IC, some with different symptoms, but the one thing we all have in common is that we are here for each other. grouphug It sounds like life has not been good to you as of late...what you have been through is enough to make anyone's bladder do cartwheels eek ! You are so very lucky to have an understanding hubby and kids...allow yourself to receive their love and support when you need it. kissing I am praying that things get better for you, and that your pain lessens soon. Please keep us posted as to how you are doing. Sending warm gentle hugs to you grouphug
            Wishing you the best, today, tomorrow, and always! Sheri G


            • #7
              Thank you all for the reply Its very sweet of all of you.Lots of hugs grouphug grouphug angel