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My IC is different this time. Would love advice.

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


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  • heybrej
    started a topic My IC is different this time. Would love advice.

    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.