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Awaiting formal diagnosis, but I know its IC..

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  • Awaiting formal diagnosis, but I know its IC..

    Hey all. Ok, so a little background. I have been a sick little puppy since I gave birth to my daughter in June of 2009. It was a very hard and stressful delivery with her ending up in the NICU for a week, on the verge of..well, you know. She is healthy as can be now though. My health started to decline month by month. Ovarian cyst after ovarian cyst (always had issues with those suckers), then just CONSTANT pelvic pain and pressure. I cant even seep most days without my back spasming up. After many ER visits and being drugged up and sent home, people began to look at me as if I was "acting" or it was all in my head. I have developed a huge lack of trust in the ER staff where I live after being labeled as an RX seeker. I have seen multiple doctors in mutiple fields who always said it was another field and sent me somewhere else. Talk about emotionally draining. I did become very depressed for a bit of time and am now on Cymbalta. A new gyno that finally took me seriously sent me to a Urologist after seeing that I had microscopic blood in my urine for over a year and it had never been looked at. (I kept being told it was no big deal and everyone has it at time. Ok.) So...here we go to the Urologist. I say we because I have a great husband who stands by me, sees the pain I go through and attends most doctor visits now with me as my validator.

    First visit with the Urologist really didn't lend much to he imagination. He didn't feel this was a urology issue and was pretty confident that he would not find anything..but was proactive and said, just in case lets schedule a cystoscopy and check you out since you ahve ahd blood in urine for a while now. Ok, can I just say the people who say in office cystos dont hurt must be super heros cause I thought I was going to come off the table and I have a pretty hgh tolerance for pain these days. The cysto did find inflammation and abnormal areas in my bladder, so my Dr scheduled me for a hydrodistention, biopsies, and a couple of other tests. Well, biopsies were clear of cancer...thankfullly. When they did the distention pin point bleeding was found in several places, and the biopsy report came back with chronic severe inflammation. My Dr and I had already discussed the possiblity of IC since my sister had been diagnosed a few years back. So...now I am basically jsut waiting for the 21st of this month to go to my follow-up and hear the final diagnosis of IC. I know that is what we are looking at now.

    I am trying to educate myself as much as possible, since again, my trust in doctors is just not really there, lol. My symtpoms post procedure are finally going away but I want to just feel normal again. I am tired of living with this constant pressure in my pelvic area. Tired of the intense pain right before my period. I have actually started skipping my placebo pills in my birthcontrol so as to NOT havea a cycle jsut to avoid the real intense pains each month. I THINK its working, lol. I do go more than the average person but after reading some posts on here, I dont think that is as bad for me as some others.


    Anyway, here I am..a newbie to what it is but not a newbie to the struggles and pain. Tired of hurting, and tired of feeling like a nuisance, complainer, and burden. Blessed that I have a hubby that tells me I'm not.

  • #2
    to the IC Network. I'm glad you found us.

    It does sound like IC --- are you following an IC diet? You'll find the link to the latest food list in my signature below. I think it would be a good idea to start today.

    It can take a while to find which treatment options work best for each individual, and which foods and drinks are a problem --- but most of us do get there --- and most of us feel good most of the time.

    Sending warm healing thoughts your way,
    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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    • #3
      I hope and pray all works out for you, in the meantime stay on a IC diet till you know for sure .
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