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Maybe I was misdiagnosed?

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  • Maybe I was misdiagnosed?

    I was diagnosed with IC this year. But i never had a "through urine culture" done, where they wait a few days for to see if any bacteria appears. I have always had the quick tests done at the doctor's office. So Im wondering what if I have gram positive bacteria in my urine such as staph and strep. I made an appointment to see my doctor next week. I found a lab in my area and all I need is a doctor's note to get my urine tested. I would encourage anyone who hasnt to get this done. I will keep others up to date with my results.
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy

  • #2
    I am currently under the impression that you think you may just have an infection, as in urinary tract infection, instead of IC. Of course, I also got the impression that you have tested negative before. Ok. I don't know how you got diagnosed with IC, but I would rather have a condition that could be cleared up with antibiotics than to have one with no known cure as well. I have had some UTI's by now. If so, that would mean you have been having an infection the whole time.(or what you're saying) Hey! I have had UTI's on top of IC. It is not fun at all.

    Comment


    • #3
      statesboro-yes I have tested negative for uti and still had the symptoms for about 4 years. I hear alot of people talk about "remission" but honestly the longest time I have never had symptoms was for about a month. Its driving me crazy. Ever since my first Uti when I was in college I took all the medication prescribed but the symptoms never went away. Thats what made me think that maybe I have a different kind of bacteria in my urine instead of the common e-coli and it was not picked up. Yesterday I went to the clinic and they sent out a culture to the lab they contract with. They are going to let it grow for a few days and call me back if something there is different. Maybe its wishfull thinking. But i was thinking my bladder is probaly so damaged now that anti-biotics may only do so much. we will see
      Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

      I have moderate-severe IC

      Currently stopped taking all medications due to pregnancy

      Comment


      • #4
        needsrelief, apparently, there is also a school of thought that says that IC is caused by the damage from many/severe UTI`s...you may just be at the "infection that really needs to be gotten rid of" stage, not the IC stage. This is kind of where I am right now too...I keep going in for cultures and they are "negative" but "negative" for a female does not mean absolutely zero bacteria...so I started taking d-mannose powder (which is a sugar that mostly comes out in your urine so it attracts bacteria and flushes it out when you pee) I took some of the powder before I went in for lab work today and they called me later saying they did find 2 types of bacteria this time and they are going to get it cultured again. They said they thought I had a "sub-clinical UTI" they just could not see before and I might have had it for a long time.(my last UTI was only 2 months ago...I say I never got rid of it to begin with) hope they find out what is causing your pain! Let us know!
        ~Jenny, 26 F
        Diagnosed with;

        Mild IC, November 09
        many many many UTI`s (always e coli so far)
        endometriosis
        ovarian cysts

        Currently taking;

        D-Mannose powder, 1 tsp 2 times daily
        D-Mannose capsules, 4 500mg caps once before bed
        Fish oil
        Vitamin E
        Caprylic acid, 1 600mg cap 2 times daily (yeast control)
        Glucosamine Sulfate (heals your bladder!!!)

        I am currently in total remission!!! :woohoo:


        Past meds;

        Elavil
        Percocet
        Dilaudid
        Elmiron
        Pyridium (never helped at all...)
        Detrol (doesn`t do anything anymore)
        Bactrim (10+ times)
        Keflex (THE most useless antibiotic of all)
        Macrobid (10+ times)
        Levaquin (once)
        Cipro (15+ times)
        Rocephin (IV, shots) (8 times that I can remember.)
        Darpaz

        Procedures;

        Ovarian cyst removal 04`(seemed to start everything)
        Cystoscopy Nov 09` dx`d with IC


        "Well I looked my demons in the eyes,
        laid bare my chest, said "Do your best, destroy me.
        You see, I've been to hell and back so many times,
        I must admit you kind of bore me."
        There's a lot of things that can kill a man,
        there's a lot of ways to die,
        yes and, some already did that walked beside me.
        There's a lot of things I don't understand,
        why so many people lie.
        Its the hurt I hide that fuels the fire inside me.
        Will I always feel this way?
        So empty, so estranged..."
        ~Ray Lamontagne

        Comment


        • #5
          MrsMack1985-Im really hoping that there is some bacteria. my "IC" didnt come out of no where. Its almost like my uti I got in college never went away. I went to a urologist a year later and he said I had bacteria vaginosis. He gave me a prescription of flagyl. I took for like 7 days. I tell you for about a month or two maybe three, I didnt have any IC like symptoms and then they returned. So I believe the flagyl did something. and flagyl is an antibiotic. I wish you luck with your testing!!! If they come back negative. I may test again just in case.
          Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

          I have moderate-severe IC

          Currently stopped taking all medications due to pregnancy

          Comment


          • #6
            Huh..I was just told I might have bacterial vaginosis too! Interesting...and yes! Test test and re-test!!
            ~Jenny, 26 F
            Diagnosed with;

            Mild IC, November 09
            many many many UTI`s (always e coli so far)
            endometriosis
            ovarian cysts

            Currently taking;

            D-Mannose powder, 1 tsp 2 times daily
            D-Mannose capsules, 4 500mg caps once before bed
            Fish oil
            Vitamin E
            Caprylic acid, 1 600mg cap 2 times daily (yeast control)
            Glucosamine Sulfate (heals your bladder!!!)

            I am currently in total remission!!! :woohoo:


            Past meds;

            Elavil
            Percocet
            Dilaudid
            Elmiron
            Pyridium (never helped at all...)
            Detrol (doesn`t do anything anymore)
            Bactrim (10+ times)
            Keflex (THE most useless antibiotic of all)
            Macrobid (10+ times)
            Levaquin (once)
            Cipro (15+ times)
            Rocephin (IV, shots) (8 times that I can remember.)
            Darpaz

            Procedures;

            Ovarian cyst removal 04`(seemed to start everything)
            Cystoscopy Nov 09` dx`d with IC


            "Well I looked my demons in the eyes,
            laid bare my chest, said "Do your best, destroy me.
            You see, I've been to hell and back so many times,
            I must admit you kind of bore me."
            There's a lot of things that can kill a man,
            there's a lot of ways to die,
            yes and, some already did that walked beside me.
            There's a lot of things I don't understand,
            why so many people lie.
            Its the hurt I hide that fuels the fire inside me.
            Will I always feel this way?
            So empty, so estranged..."
            ~Ray Lamontagne

            Comment


            • #7
              MrsMack1985- I gotta wait a few days for an update on the culture. I will let you know. got my fingers crossed.
              Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

              I have moderate-severe IC

              Currently stopped taking all medications due to pregnancy

              Comment


              • #8
                needsrelief You wrote: So I believe the flagyl did something. and flagyl is an antibiotic.

                I looked up Flagyl it is often prescribed with an antibiotic, but it falls under the categories of being a "Amebicides and Antiprotozoals" I believe these are parasites. I know it is prescribed for lots of things.
                My are with you all. May you all find a way to peace and joy in your lives.

                Comment


                • #9
                  mothergoose-indeed it is used for many bacterial infections- "Flagyl is used to fight or prevent a bacterial infection. It is used for a wide variety of infections including those in the adbomen, bones, joints, nervous system, respiratory tract, skin, as well as vaginal and intestinal infections".
                  Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

                  I have moderate-severe IC

                  Currently stopped taking all medications due to pregnancy

                  Comment

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