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  • i'm new to this

    hi everyone! i am f/20/MI, and i was just diagnosed with IC. i have been experiencing symptoms for years, but within the last year i started having severe pain. went to the gyno because i thought that was it... and was diagnosed with endometriosis. i had surgery, and the pain didn't stop...was sent to a uro., and well, you know the story. i am scared and don't really know what to think about all of this. did you guys go on a strict diet? what about sex??? there is soo much to think about, it's overwhelming. please, leave a message for me, i would really like to make friends that have the same problem. thanks!
    ~ kat
    "When word's fail, music speaks ."

  • #2
    Hi kat and welcome!

    I think the first year after diagnosis can be one of the toughest. Lots of questions...lots of emotions. You'll find TONS of support and coping tips from all of the IC'ers here as well as on the website itself. As far as the diet goes, I have found that diet plays a huge role in how I feel. Juices, fruit, caffeine, vinegar, and spices all burn my bladder. The tricky part about the diet is finding out which foods are bothering you. It's not the same for all of us so you pretty much have to start with the obvious and then, through trial and error, pinpoint the booger foods. Keeping a written diary of what you're eating and your symptoms will help you tremendously and remember that some foods can trigger our symptoms even a day after eating them. Some ICer's have pain, some don't. Again, it's individual but for those of us who do have pain, a lubricant can really help.

    As a veteran IC'er my first batch of advice would be to nurture you body, soul and mind. Don't push yourself, pamper yourself. Don't beat yourself up for having IC either, praise yourself for being so strong.

    You are not alone.

    [email protected]
    (also in Michigan)
    "The first time her laughter unfurled it's wings into the wind....
    We knew that the world would never be the same."
    ~Brian Andres

    Baby Kaitlyn was born on 07/08/01 after a successful pregnancy with IC!


    • #3
      I understand totally how you are feeling. I felt the same way when I was first diagnosed. It was a relief to finally know for sure what the problem was but upsetting to know that it was going to be something I'd have to work at to manage. I've found pretty good relief with a combination of treatments (Elmiron and Ditropan XL) as well as avoiding diet triggers. Lesa is so right - diet can make such a huge difference in the level of your symptoms. I still remember being amazed when I confirmed my first food/flare connection (tomatoes). And what a difference it made, right off the bat, for me to cut them out.

      The ICN message boards are a great source of support and information. I'm so glad you found us! [img]smile.gif[/img] I also highly recommend the excellent book by Dr. Robert Moldwin called the Interstitial Cystitis Survival Guide. It has excellent sections on the various IC treatments. By far, the most cutting edge, informative book out there on IC.

      Hang in there, Kat! We're here for you now. Let us know how you're doing, okay?

      Sending healing wishes,
      Melanie J. (your southern neighbor [img]wink.gif[/img] )
      "The sun shines not on us, but in us." John Muir

      Living a happy life in spite of IC!


      • #4
        Hi Kat! Welcome to the ICN! [img]smile.gif[/img]

        Like Lesa and Melanie, I have to stick pretty closely to an IC-safe diet. I find acidic and spicy foods/beverages bother my bladder. Elmiron is a medication that helped me a lot as well. We're all different, and I hope you find a combination of medications, treatments and/or diet that will bring you some relief! [img]smile.gif[/img]

        Take care and welcome again [img]smile.gif[/img]

        My story of healing and hope