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I am a newbie and am scared to death!

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  • #1

    I am a newbie and am scared to death!

    I guess I should consider myself lucky....I started having symptoms of IC right before Thanksgiving and I have already had a prelim diagnosis and am scheduled for a hydrodistension on Thursday of this week. In other words, my doctor is not wasting any time with getting to the bottom of this. That being said, it has been a whilrlwind of doctor appointments, drugs, cath's, and more doctor appointments. Thanks goodness for insurance!!!!

    The hydro scares me as I do not know what to expect. I have a low pain tolerence so any type of procedure is uncomfortable for me. (My IC appears to be a mild case as I have only a small amount of pain and suffer only moderate urgency and burning)

    I realize everyone's experiences are different, but can someone give me a general idea of what to expect?
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  • #2
    Hi! I can tell you that I was scared too!! But the lead up was worse than the procedure. I went to sleep and woke up and it was over. I would ask your doc if you will have a cath when you wake up because for me that was the most painful part. Afterwards, I just had soreness and frequency for about a week to 10 days but nothing that was unbearable. Good luck and hopefully you'll have as easy an experience as I did!!! It will be good to have the info for sure!! Plus, lots of people get significant relief from the hydros. Let us know how it goes!!
    Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
    Lexapro-20 mg
    Aciphex
    Ambien-as needed
    Percocet-7.5 up to 3 per day as needed
    Valium-10 mg x2 per day
    Phenergan-1 at night
    Prelief w/everything
    Now recovering from acute pancreatitis

    Currents treatments that help somewhat:
    Heating pad
    Hot baths
    Ice
    Being VERY still while lying down with legs elevated

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    • #3
      Hi, my daughter who is 12 had this done several weeks ago. She has just about zero tolerance for pain and did ok with the procedure. I do think the worry before hand is the hardest part. For her the worse part was coming out of the anesthesia, she kept thinking she was dreaming. She did have an increase in feeling as if she had to go for several days and after the second day found that getting out and walking actually helped. On the positive side the procedure ruled out other issues such as bladder stones and cancer and confirmed the diagnosis of IC so we know we're on the right track for helping her. Good luck, hope all goes well for you.
      I am the mother of two daughters. One is 11 and was diagnosed last year with IC, the oldest daughter is now 14 and was diagnosed with IC also at the age of 11 but only after many months of suffering and misdiagnoses until we found Dr. Atkins in Wes Chester, PA who has been a huge support for Megan. You see most IC specialist will not see children, he made an exception and gave her her life back! She had a cystoscopy and hydrodistension in December 2010 which confirmed the diagnosis.


      Remember: You know yourself/your child. Don't let anyone convince you that "It's all in your/their head" or "you/they just don't want to go to work/school". Keep pushing until you get a doctor you are comfortable with and an answer that truly addresses the problems.

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