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  • New to IC but Not IC issues

    Hello! I just recently discovered this forum and it is like a god send! I am a 42 year old woman who has had IC and pelvic floor dysfunction for the last 4 years. I have recently had an increase in my issues that have not been taken seriously by my doctor. When this started nearly 4 years ago, I had episodes of pain, urgency, hesitancy, leaking, and retention that scared the heck of me. I ended up in the ER and made the rounds of doctors and urologists that did not know what to make of me. The urologist did all the standard tests and concluded that my bladder was fine, so my problems must all be in my head. Ditto for my regular doctor who told me that it was just anxiety causing these issues. That never made sense to me, but I carried on with my life and things did improve some. Then just a couple of weeks ago, things got really bad again. Another trip to the ER. This time to doctor there was a little more knowledgeable and understanding. He actually talked about the role of the pelvic floor and told me to get an MRI to see if there was anything that could be seen. He prescribed a drug that reduced my bladder spasms, which isn't really doing much. But I did feel heard at least. I'm still struggling and waiting for the results of my MRI. I'm reading Heal Pelvic Pain, and that book is like a lightning bolt for my symptoms. I'm so glad to have found this forum!

  • #2
    I have a similar story with the ER, but I'm glad the second time they gave you some medication. I would find a knowledgeable Urogynecologist in your area and make an appointment. If you've been on the medication for two weeks and haven't seen much improvement then you might need to have the dosage tweaked or switch medications. Also, the pelvic floor does play a role in all of this--at least for me. I have a hypertonic pelvic floor and see a pelvic floor physical therapist. I recently started but can see small improvements.

    I have never heard of that book, but I'm going to look into it!

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    • #3
      to the IC Network. I'm glad you found us.

      I understand how you are feeling --- my IC was diagnosed almost 47 years ago and my absolute worst time was before diagnosis. Once I learned what I have, I am able to deal with it. The MRI will probably not result in a diagnosis, but can be an important part of the ruling out process that diagnoses interstitial cystitis. There are some things you can do while waiting to be diagnosed. I suggest you give the IC diet a try. And if you go to the home page (link at the top of this page), you'll find a link to locate medical providers --- there may be a urologist in your area who has been recommended by other IC patients.

      Sending well wishes,
      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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      • #4
        Thanks for the response! I've basically been devouring everything here on the site and have been reading a couple of books on the issue. I have already started the IC diet, and have cut out all caffeine and alcohol, along with some other foods that may be a trigger for me. I have been looking into finding a new doctor in my area, along with a physical therapist that can tell me more about my pelvic issues, which I think are really the driving force behind all of my symptoms. I will probably be here on the forums a lot in the coming days and months!

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