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My Story and a question

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  • My Story and a question

    My name is Stephanie and I am 31 years old. I was diagnosed with IC when I was 19. Over the years I've had two hydrodistensions, I did DMSO/Rimso, I took various antidepressants and I took Elmiron before it was approved in the U.S. I have gone through many urologists and a lot of insurance problems. About 4 years ago I stopped all of my treatments for my IC. It felt to me that the side effects were just as bad as IC. The reason that I am coming to this site is that I'm hoping to hear about new treatments that have come out since I last saw my urologist. (I am very fortunate to have C. Lowell Parsons as my urologist.) It takes quite a bit of haggling to see him because he is not in my insurance group, so I want to be well prepared before with questions and possible options before I go.

    My IC is pretty consistent. My pain level is always about a 6 on a scale of 1-10. That for me is easier to deal with than the feeling of urgency, especially when trying to fall asleep.

    What treatments are working for you? What have you found that works best for the feeling of urgency? I know I never fully empty my bladder, but there has to be something to help me ignore the feeling and get to sleep. After all these years I still take about an hour and half to get to sleep and I need to go to the bathroom 5 or 6 times before I actually fall asleep. Any input would be appreciated.


  • #2
    Welcome to the IC Network. There have been many changes in IC treatment in the last four years. For one thing, Elmiron is now available and has helped many people.

    I suggest that you read the information in the Patient Handbook (It's on the pull-down menu at the top of this page) --- there's a lot of information there about treatments.

    Also, if your pain is a level 6, I think it would be a good idea to see your urologist. It's very possible your symptoms can be eased.

    Warm hugs,
    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
      I tried many of the medications available - antidepressants, antispasmodics, antihistamines, DMSO, Elmiron before it was approved in the U.S., antibiotics, etc. - but found that either there was no effect or the side effects were worse than any benefit.

      Have you looked at the connection of diet to IC symptoms? I've found that for me diet is a key factor in my symptoms of urgency and frequency. And using Prelief helps me now eat some of the "forbidden" foods ocassionally. There's good information about the diet in the patient handbook that Donna mentioned in her message.


      • #4
        Thanks for your responses. I'll check out the info on new treatments. The only thing that has really worked for me so far has been diet modification and Prelief. However, I think it's been long enough to maybe go back to the doctor. Thanks again.