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possible IC -sending myself crazy with too much googling

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  • #1

    possible IC -sending myself crazy with too much googling

    Hello all, I'm in awe of what you all deal with and have been dealing with for so long. I fear I'm not as brave or wise!

    I've just had a month of this (no diagnosis yet)...basically desperate urge to urinate all the time (during the day)...and pressure in the bladder.

    My dr gave me first round of antibiotics but a few days later the test came back negative...he said to keep taking them anyway. A week later...all still bad so 2 more types of AB's taken at the same time...still nothing showing in tests.

    And finally I went back last week - he did a scan of my uterus and kidneys and all looked fine. He couldn't do a scan of my bladder as it wasn't full enough. He gave me more AB's....reassuring me that sometimes infections don't show up. The seemed to work after 3 days but now symptoms are back (after another 3 days)....I still have 4 more days of tablets.

    He said if this AB's didn't work he would do some sort of inflation of my bladder under GA.

    I'm so scared....I'm hoping this is anxiety. I have to go the loo all the time but I don't have any burning pain, I don't have to get up at night (well maybe once)...is there a chance this isn't IC?
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  • #2
    Hi There
    Its hard to say at this point so I'm glad your doctor is going to do what sounds like a cystoscopy with hydrodistention if you're not better.
    IC has different symptoms for different people depending on the severity of the condition. Some have symptoms like yours frequency and urgency not much pain, no frequency at night (I'm like you). Some have pain and no frequency, some have pain, urgency and frequency. You get the picture it can really vary from person to person.
    I hope you don't have IC but it sounds like you have a pro-active doctor at least.

    Start the IC diet (on the home page, under the topic "diet can help" on the main page there). Alot of foods and beverages are super irritating to the bladder (coffee, tea, soda, flavored water, citrus juice, alcohol and many foods like tomatoes, chocolate, condiments, and many many more.) Cutting out those foods might have a good chance of helping you feel better while you're waiting to see what happens.
    Cindi


    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    Great treatment flowchart on page 19 of the pdf

    Comment

    • #3
      It does sound like your doctor suspects you have IC and is planning to do a hydrodistention to diagnose. In the meantime, I suggest you give the IC diet a try --- some find that single step helps significantly. You'll find the link to the latest food list in my signature below.

      Sending warm welcoming hugs,
      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

      • #4
        thank you both for taking the time to answer. I keep hoping someones going to say 'oh no - that sounds nothing like IC ;-)...but I know that's not the case.

        However I've just realised that I've been taking the ABs incorrectly (what an idiot)...

        So hoping that the correct dosage makes something happen.

        I have however cut out caffeine, tomatoes (hard because I do a lot of italian style cooking!) chocolate and alcohol already...which can only do good can't it?

        Comment

        • #5
          Good job Ellie for cutting out the worst culprits. Think acid. Anything acidic, try to avoid, and you might want to keep a diary for a few weeks of your eating/drinking/voiding, just so maybe you yourself can see a pattern. Even if it is not IC, it's a soothing diet for anyone with urinary problems.

          UAs will not be reliable after taking antibiiotics. Surprised your doc did not tell you this. Most docs will not even do a UA after you take your first pill. You get false readings.

          Ask questions, what exactly are they going to do? You are the customer, they are the ones getting paid. Do not ever be afraid of asking, and if they are not nice about it, time to find a new doc. Never be scared of behaving like you know what you're talking about.

          Google, a wonderful thing. The diet on ICN is a wonderful resource, and also google acidic/alkaline foods and that just reinforces it. Think we all get tired of doing our own searches for answers, but can assure you the folks who run the ICN have already been there and let us know anyway. Sure we always hope maybe they missed something, but have never seen it happen.

          Hope you feel better soon, don't get yourself down about this, you're not even there, could be multiple things. Let everyone know what happens. Jill, wife of Bob

          Comment

          • #6
            thank you so much Jill...that information on the false results is extremely interesting (and gives me a bit of hope!). My heart has sunk every time he's told me it's a negative result (2 since the first one)...but what you say of course makes sense. Not sure why he would keep trying. It's also always on urine where I have been drinking tons of water - not sure if that makes a difference but I remember years ago it used to have to be done first thing in the morning!

            I do agree it's tiring having to be the one finding the answers. I have had all this before when I had an incompetent cervix with my 2nd pregnancy (what is it with me and problems starting with 'IC'!!?). My dr was less than useless and suggested I should prepare for losing the baby at 23 weeks. But I googled like crazy - came up with an action plan and she got to 38 weeks and is perfect.

            So I'm hoping I don't have to do all that again...but I will if needs be. The only issue I really keep thinking now is do I bother to have the test if the AB's don't work this time? I'm so sure I'm going to try the alternative route first (though diet etc)...that an invasive test seems like an extreme option.

            Anyway - that question can wait till I actually know if the ABs don't work (now I"m actually taking them correctly!)

            Comment

            • #7
              Hi Elliel,

              I'm sorry you're having to deal with this.

              Please do check our the ICN diet list link in OCNDonna's post above. Not saying that this is IC you have, but if it is, the diet can make a huge difference. Some common offenders are not obvious, so this list was very helpful to me.

              I know you're scared but try to not let your mind run too far in advance as to what it might be. (easier said that done, huh?) It does sound like your doctor is moving forward in a reasonable way for now. Sometimes those wheels turn so slowly for us though!

              Vicki
              "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

              Comment

              • #8
                Thanks Vicki - I have printed it out and I keep it with me now. You are so right about their being things on there that are totally suprising!

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