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  • #1

    My Story...

    Well, I was diagnosed with IC about a year ago. (After many MIS-diagnosis') I have had the bladder hydrodistensions done 3 times since. This last one (only about 1 1/2 months ago) did NOTHING to help the frequency. The Elmiron does nothing.... I'm at my wits end! I have an appt. with Dr. Moldwin in October (he runs the IC Center in Long Island.) My uro is of no help to me what-so-ever. He recommends doing the surgery every 4 or 5 months..... says that that will be my only "relief". I am seeing a naturopathic doctor who seems more sympathetic and he has me taking some supplements to try to help "rebuild" the connective tissue and to help me with the uncomfortableness of if all. So far, it seems to be a little better. I am just always aware of my bladder. I have some pain (not bad), but the frequency (up to 20-30 times a day) is just depressing.....

    I would love to hear from any of you that could offer some advise or anything that would help me through this very ugly disorder.

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  • #2
    Welcome to the ICN
    You have found a great place for emotional support and you will find many helpful suggestions from some very caring people.

    Hydro's helped me for 10 years and then they stopped....I've learned to live with the frequency and urgency for now. All treatments have failed. It's pain that is my major issue and I'm going thru alot of changes to try to get that taken care of.

    I can't speak for everyone but there isn't a minute that goes by that I am not aware of my bladder. I don't think that will ever go away.

    There are alot of different medication and treatments available for the urgency and frequency and hopefully you will get the help you need when you see your new dr in October.

    You have just started on your IC journey and there is soooooooooooooo much hope for you. I know how depressing it is when you finally get the proper dx but at least now you are able to get proper treatment.

    I hope that you stick around and join our family~I think we are a pretty great bunch of people

    Again, Welcome to the ICN
    teri
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

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    • #3
      Welcome to the IC Network. You'll find a great deal of information and support here.

      I have had many hydrodistentions in my 26 years with IC and they have always helped.

      I think you are fortunate to be able to see Dr. Moldwin --- he's one of the most knowledgeable about IC. I'll be anxious to hear what he suggests for treatments.

      I do hope you feel better very soon.

      Warm hugs,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      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: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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.       [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

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