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  • ICNDonna
    replied
    to the IC Network family. I'm glad you found us.

    I do understand how you are feeling --- believe me that it will get better. It can take a while to find the most effective treatment options for each individual but most of us do and most of us feel good most of the time.

    Warm hugs,
    Donna

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  • greeneyes
    replied
    Hello, I too am newly diagnosed (just a couple on months) I started my treatment with instills once a week for 6 weeks and like you all I could think about was "wow" I hate having my yearly exam and now to do this every week, but I will tell you after the first instill I woke up the next morning and no pain it was well worth my exposure to not have pain. I am now on Elmiron 100 mg twice a day and will have my first hydro next friday. Just remember it may take time to find the right treatment for you but you will find the light at the end of the tunnel.

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  • Becky Jane
    replied
    Hello and welcome Im sorry about your diagnosis but thankful that it didnt take too long and now you can begin getting proper treatment for IC. Has your doctor suggested Elmiron? or any of the other medications commonly prescribed for IC? Im hoping that the instillations will give you some relief. The diet does help me alot with my symptoms. There are alot of foods that many of us cant tolerate but there are many that we can enjoy to the fullest! I had a soft serve vanilla cone the other day, it was heavenly!

    Im glad that your fella is trying to be understanding about IC. Im sure he sees that you are so much more then the IC and will be there to support you through treatment Keep learning all you can about IC but dont believe everything you read on the internet. There are many treatments to try, if one doesnt work you can try something else and go back and try things again if need be.

    Ive had IC for 15 years and now have 2 children and a busy life caring for my husband and my boys. Not every day is perfect or painfree but each one is a gift

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  • Jules1333
    started a topic Newly Diagnosed...

    Newly Diagnosed...

    Hey ya'll, I was just diagnosed last week with IC. I am 23 years old, and have had symptoms for about two years. I think in my gut throughout these years I knew it was IC...but now it's really...real! I find it hard to even grasp this notion.

    I find this all to be very overwhelming and it makes me feel ostracized and lonely. Currently I am going to physical therapy and will start bladder installations this week. I personally have the HARDEST time even being okay with being so exposed every week. To me it's a really humiliating upsetting process. I even have a really nice, smart, female doctor, but it does not ease that anxiety what so ever.

    The hardest part I am finding is dealing with the constant pain. I know that right now it's a very bad flare up, so perhaps it won't last forever (although it's hard to see the light at the end of the tunnel!) but it just won't seem to let up! Being in pain all the time makes me so moody, and negative. It's so hard to be positive when you just don't feel good! Painkillers might take the pain away....but they make me even more down about things. It's a catch 22.

    I just starting dating someone that I really like...so thats a whole new set of issues. I am thankful he is so kind and understanding, but I am constantly worried that one day...it'll just be too much.

    I bought a lot of books about IC and books on the IC diet. It seems like I am sensitive to most foods so it's really difficult to find things safe enough to eat. It's a lot of work, and I'm really hungry!

    Anywho, that's my story. I am looking forward to getting more information about IC and listening to other people's IC stories. I hope that in time it will all get more manageable.
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