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  • How do you know?

    I am relatively new to all of this-diagnosed in October with hydro-cysto. I am in my third bad flare. This one is the worst-second day of severe bladder burn/pain, and first time frequency and terrible pressure.

    I started taking pyridium yesterday and am on Elavil 20mg at night. My question is-my pain is not getting any better, maybe even a little worse. How do you know for sure if it's not a uti. My doc acts all mad if I call and now that I have taken a pyridium, can they even tell if I have a uti? Stupid questions, I know, but I am lost and in bad pain. Help!

  • #2
    Hi, you ask a very good question! The truth is, we CAN'T tell the difference between an IC flare or a UTI, at least not without a test kit, because they both feel exactly the same!

    Any doctor who knows ANYTHING about IC ought to know that. But sadly, many doctors are still quite ignorant about IC, and don't even seem to exhibit a willingness to learn.

    Some IC'ers have bought test kits, I'm not sure what the name of it is, but I think they are available at the drug store? But I always prefer to go in and be tested, because when I go into the ER and I'm tested, they culture it for me to find out which antibiotic to use (if in fact it is a UTI rather than a flare.)

    I hope you feel better soon! There are so many self-help suggestions for flares in the patient handbook - if you are feeling well enough, perhaps you could read a bit in there and see if any of those things could help you feel better until the flare passes?

    Blessings,
    Lori

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    • #3
      Well thats a really good question and I guess even after 2years of having IC I still sometimes dont know!!!
      Although you do get abit more familiar with symptoms and start to know when its a uti but there have been many times when I'm not sure! I guess we are all the same!

      Sometimes I am so bad I think to myself "I MUST HAVE A UTI" then I do a test and its negative!!!!!
      The best thing to do is get a test and drink tons of water
      x
      Started with symptoms 2004 after a severe infection.
      Was diagnosed with IC Feb 2006 after cystoscopy.
      Diagnosed with vulvodyina and PN in july 2006.
      Dignosed with ME and IBS Oct 2006.
      Currently taking Amytriptaline 50mg, regular pain killers and birth control!
      Also doing IC diet and regular use of heat packs.
      Still struggling with IC and controling my symptoms so looking for some help

      also recently had abnormal pap, CIN III and just had LEEP done 2007

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      • #4
        Thanks Lori and kjd. I have a couple quick questions. Does pyridium affect the test? And what happens if the white cell count is off, but no nitrites? I bought the test and did it, and the nitrite was normal and the blood count wasn't. Yikes, I am soo confused and feeling like crap. I know I'll get through this, but darn, does it hurt!!

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        • #5
          Those at home test kits are not always reliable. I took the at home test strip a couple weeks ago and it was completely normal, yet I went to have a culture done which showed a huge infection going on. I dont trust those things.
          Jen

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          • #6
            Marymove,
            My uro told me to continue taking my prosed. She said that it wouldn't hurt the test. I think peridium is a little different. The prosed turns your pee blue. I think the peridium turns it orange.
            My dr. wants me to take the prosed because I have to take it long term and because I have taken the other stuff so long. I think the peridium and azo helps more, but I try to do what the doc tells me to.
            She said it didn't affect the test, but when I took the azo standard they would have to culture it. I don't know if this helps.

            MelissaT

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            • #7
              Thanks Melissa and Jen. I am actually feeling alittle better after two days of hell. This IC is so confusing-symptoms being so similar to uti"s. Guess I'll figure it out eventually. Thanks again.

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              • #8
                I have had IC for 17 years and there's still times that I don't know if its an infection or not-- (sure I've got the test strips-don't really trust them). Most times I'll go to the doctor if its really bad, and in most cases I made the right decision. I also take pyridium(?) and my doctor said it really didn't make much difference.

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                • #9
                  Where can you purchase the test kits at? I called a couple places and could not find them. Thanks in advance!!!!!!

                  Comment


                  • #10
                    re

                    i was very worried that i would not be able to tell the difference...
                    between regular flare...& uti

                    then in jan...i got my first UTI since being diagnosed last JULY

                    but i could tell the difference immediately...it was more of a pulling sensation after i pee'd

                    it felt different somehow
                    more like a normal uti before ic

                    vs

                    the burn i that i have now... comes and goes

                    to me...the uti burn...was lower..more near vagina
                    while the IC burn..is higher..more near the clitoris?

                    maybe i am crazy
                    but hope that helps
                    Quit ELMIRON due to hair loss
                    Cystoprotek ROCKS!

                    find me on FACEBOOK -
                    search my email [email protected]

                    Current Meds:
                    AM Cystoprotek & ATARAX 50mg
                    Dinner CYSTOPROTEK
                    PM Elavil 25mg

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                    • #11
                      Most pharmacies will carry the UTI home test kits. If you've taken pyridium, you won't be able to use the color coded test strips until the pyridium is out of your system, however. There is one kit, called First Response that foams if there's infection, so it might work even with the pyridium.

                      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

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                      • #12
                        Donna, Where do you get the first resopnse UTI kIt? The only ones they sell that I have seen where I live is the Azo UTI test strips and this other test stick by wellbeing. Neither of them worked for me the last time I had a bad UTI. Neither of them showed any infection.

                        As far as telling the difference between a UTI and flare, I am not able to tell. I am always in conatant pain (bad pain) and could not really tell. I feel like I always have a UTI, just a a real bad one.
                        Jen

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