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New and Now Freaking Out

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  • New and Now Freaking Out

    All of my issues started about ten years ago (I'm 35). I was constantly getting UTIs (or so I thought) at a rate of one every 1-2 months. I was always put on antibiotics and it would get better for a bit and then return. Though I wasn't aware of it at the time, my dipsticks and/or cultures only showed blood and sometimes protein. Very rarely were there actually WBC or other signs of infection.

    And the really strange thing was that I never had typical UTI symptoms (burning, etc). I didn't consider the frequency/urgency to be a symptom of it because that was a constant for me - it didn't come and go. I would always go to the doctor and say "I must have a UTI, even though I don't have symptoms, I just don't feel right and my cramping/pain in my stomach and back has increased." And out would come the script for antibiotics. At one point, I was on a daily regimen of Levaquin for probably a year.

    During the past ten years, I've been diagnosed with IBS (for stomach pains - even though there was no diarrhea, etc), IgA nephropathy (even though I never had a kidney biopsy), chronic UTIs, etc, etc, etc.

    While I was pregnant, my symptoms subsided. I felt great, no supposed UTIs, etc. This continued until my son was about 18 months old and my doctors all said the pregnancy hormones must have been kind to my body.

    At this time (January 2011), the pain returned with a vengeance along with frequency and urgency. I was spending my weekends in bed curled up in a ball thinking I possibly had another kidney stone.

    I was evaluated for UTI (and again put on antibiotics), had a CT scan, etc and all came back normal. It was then I was referred to a new urologist. The first one I went to I thought was an idiot but he did mention IC. With this new condition in my mind now, which no one in ten years had EVER mentioned, I started searching online and thought "oh my gosh, that's me!"

    I found a urlogist who specializes in IC and saw him. I had the potassium sensitivity test and was diagnosed in April of this year. They started me on Elavil, 400mg Elmiron and Zyrtec.

    The Elavil didn't last long - I also have tachycardia and it increased my heart rate even with beta blockers. Just last week, I had to stop taking Elmiron due to the little known side effect of rectal bleeding. So now, I'm only on Zyrtec and of course following IC diet.

    Now to my freaking out part....

    The bloating has been very bad recently and as many of you say, I look pregnant by the end of many days. It usually is much less in the morning and gets progressively worse through the day. Dietary changes don't seem to make it better or worse.

    My mom was watching Dr. Oz the other day and he was talking about ovarian cancer and as he went through the symptoms, my mom started to freak out. She called me in a panic and insisted I don't have IC and could possibly have ovarian cancer instead which would explain the bloating.

    Now, I fully believe I have IC. It explains everything that has happened over the past 10 years. She is basing this largely on the doctor she works for saying bloating is not a part of IC!! I have an appointment with my doctor this afternoon solely to ease her mind.

    I would ASSUME bloating with ovarian cancer would be constant. Some days, my stomach is flat (or as flat as it can be for me! LOL) and other days, I look pregnant. This is normal for IC, is it not?

    Also, I wanted to ask about Atarax versus Zyrtec. Is it considered to be a better option? I was considering asking for this at my appointment this afternoon.

    Sorry for the incredibly LONG post. Thanks for having me here!

  • #2
    Welcome Rangerwife and Welcome to the IC network. I wanted to say I think it's a great idea to be checked by your GYN because some of us with IC also have endometreosis (spelling) and some of us would say we have the "IC Belly". Hope everthing goes good at your appt. today.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily


    • #3
      I had terrible bloating by the end of the day when my symptoms began and by morning it was gone. It always coincided with how much pain I was having that day. It seems to be pretty common with IC/PBS. I wasn't able to tolerate Atarax as it made me nervous (similar to what tricyclics do to me) so I took Benadryl. It worked well for me but was sedating so I only took it at night.


      • #4
        It's always good to have everything checked out, but your mother's doctor is wrong about swelling with IC --- we've even dubbed it the "IC belly" --- and many, if not most, of us have it at least during flares.

        Warm hugs,
        Stay safe

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