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i need advice before i lose my head!

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  • #1

    i need advice before i lose my head!

    Hi, i am a new member and would really appreciate your views, I realise you can't give me a diagnosis, but you are the ones with the expertise about IC (as opposed to any qualified physician ive seen so far!). My story in brief: a month ago i was a curry-eating cocktail-swilling 'normal' person who besides a few UTIs had never given her bladder a thought. One day I drank a coffee, needed to pee, didnt for around 3 hours. That night i got up to pee 10 times, and from them the saga began. My only symptom for the next week was frequency, and the inability to push out anything but drips, much much worse at night. Over the next 2 weeks i was put on two antibiotics, despite no sign of UTI when doc did urine test. I found the bladder diet here, and cut out alcohol and caffeine and things seemed to improve a lot.
    I have been to see a urologist and he was quite dismissive of the diet thing (very old school!) and also said he doesnt think ive IC as I described no pain and my symptoms sorted themselves out quite suddenly. But i see from this forum that many of you dont get that awful pain and that a flare can go away quite suddenly. At this point i can often be fine, but then get this burning feeling coupled with a menstrual cramp, and it is usually following eating something (last night it was after goats cheese). But then ive had a glass of wine/parmesan/tea at other times and have been fine.
    The urologist has booked me in for one of those hardcore cystoscopies under a general anaesthetic in september, i dont think i will go for it, i hear it can in inconclusive, can make things worse, and besides im a teacher and take a day off in September following long summer vacation will NOT make me very popular!
    im sorry to have gone on, i would just love to know if this all sounds like IC or not, and if youve any advice. i have got so much info from this site i am beginning to feel like a qualified urologist myself, and you are all so nice and helpful to each other, which is rare on the internet. So, thanks in advance.
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  • #2
    to the IC Network. I'm glad you found us.

    If you're not comfortable with what you're being told, my suggestion is to see a different urologist for a second opinion. I was diagnosed via a hydrodistention with anesthesia in 1975 and found the procedure alleviated my symptoms for many months. Some doctors are still using the hydro for diagnosis. Some are also diagnosing based on symptoms alone, some are using a potassium sensitivity test done in the office.

    It does sound like IC is a possibility --- I did note that you seem to be straining to urinate, which will by itself increase irritation.

    I hope you get some answers soon; my worst time with interstitial cystitis was the time before I was diagnosed.

    Sending warm healing thoughts,
    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

    Comment

    • #3
      thanks Donna. you're right, the not knowing is the worst bit. it can lead to lots of harmful googling!

      Comment

      • #4
        If you stick to sites such as this one, the ICA, WebMd, etc., it's much safer. If you find a site with lots of testimonials --- I don't give them much credence, even though some might be okay.


        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

        Comment

        • #5
          I would absolutely find another Uro if you can. IC does NOT have to come with pain. I myself only have frequency issues.

          If you can afford it I wouldn't be too afraid of a cysto, especially under anesthesia. I had hardly any pain and it was amazing to see how trashed my bladder was. Especially since I never had any pain! I think if I didn't have that I would see be, "Hmm...well maybe I don't have IC; I mean I don't have any pain..."

          Just my .02.

          Best of luck!

          Comment

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