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My IC is different this time. Would love advice.

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  • My IC is different this time. Would love advice.

    Hi all. I feel like I have been jumping around all over the board since logging on for the first time in years. Forgive me if you've seen my posts and this is repetative!

    A bit about me: I was diagnosed with IC by my urologist when I was 19 (2004). Prior to that, I had gotten my very first UTI and for the next 6 months, the pain never really went away completely. Cultures stopped showing up positive for UTI's and I was finally referred to a urologist. My symptoms at the time: Burning in my uretha...constant, but worse when I urinated, frequency (although not as bad as some other IC patients) and mild bladder pain. My main problem was the burning in my urethra. Nothing helped - Azo and Pyridium did literally nothing, one doc gave me Vicodin...nothing. Pretty much any time I was at home I sat with a heating pad between my legs. I had 12 straight weeks of bladder instillations but I am not recalling what medication it was. I don't recall feeling ANY relief from the instillations, either immediately or shortly thereafter. Honestly, the year and a half where my IC was "bad" is such a fog. I was young, starting a new job, going to college, and getting engaged and then married. I don't even recall how my IC went into "remission" - it just slowly got better and then I had zero symptoms for over 5 years. I would get an occassional UTI, once every year or two, but each one went away after a normal course of antibiotics.

    So, this brings us to now. I had a SEVERE UTI come about out of the blue in June. I was fine, and then all of a sudden I woke up in the middle of the night in terrible pain and began peeing out chunks of blood just a few hours later. I thought it might have been a kidney stone (the chunks) but I had no kidney pain. I had always kept a prescription of antibiotics on me, so I was stupid and never actually saw a doc because I was uninsured. I just self treated with my antibiotics. As per my usual UTI's, my symptoms went away within a few days and I finished out my antibiotics. Then, in August, I got another UTI, but this one started out more slowly. I started feeling slight bladder/urethra pain but the over the counter Azo test strips were negative for a few days. Then finally, one was positive, so I took more antibiotics. Well, it's been about 3 weeks (I took 7 full days of Macrobid) and now I believe that it's just my IC flaring back up after all of these years. The Azo test strips are negative again. I just started taking a few classes at the community college where I have access to a clinic. I am going to go in next week and ask for a culture to ensure that there is no bacteria and that my UTI is truly gone. I am also in the process of getting an insurance policy, so I'm praying that goes through and I can not worry about self treating due to financial issues

    My symptoms now are very different than before. While I am upset that my IC seems to be back at all, I am thankful that it's not as bad as it was 5 years ago. I have a very mild urethra irritation only after urinating. No acutal pain while I'm going. I also "feel" my bladder - it's like a mild ache that is there nearly constantly. Here is the interesting thing though. It seems to get WORSE throughout the day. When I wake up in the morning, I feel symptom free for usually an hour or two. Then, it slowly starts to feel achy and by the time I am ready to go to bed at night, it bothers me to the point that I can't go to sleep. I've been taking Ativan (that I got when my dad was diagnosed with terminal lung cancer a few months ago) and 1 Tylenol PM - I CANNOT go to bed without these. I am able to sleep through the night. I also notice that I can't hold my bladder as much as before. I would say that my frequency is about double what it was when I was symptom free, so not terrible, but "different".

    The only thing I'm doing right now is getting back on the IC diet (I was completely off of it when I was symptom free). Since I've been out of the "IC world" for 5 years, I'm curious to know if there are new over the counter treatments that I might be able to try until my insurance kicks in. I've been taking Azo here and there but don't really notice a difference.

    Thanks for listening to my long post Any words of advice or encouragement are more than welcome.
    Diagnosed with IC in 2004 at the age of 19
    12 weeks of instillations (don't remember what)
    Remission from late 2005 until August 2011.
    Married in 2005 - Our son was born in 2008!

    IC acting back up after a severe UTI in June followed by another mild UTI in August.

    Current Treatment
    ~IC diet - not strict, but avoiding most things including my beloved soy chai lattes. Drinking only water and blueberry juice. No tomatoes or anything spicey.
    ~1/2-1mg Ativan per day - has been the only thing to help! Praying that my doctor will let me continue with it
    ~25mg Doxipen
    ~Azo as needed (don't really notice a difference)

    IC symptoms get progressively worse throughout the day. Sleep and constant distraction are my only refuge!

  • #2
    You really, really need to see a doctor. Sticking with the diet is a good idea as well.


    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.

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    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]

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