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Worried and confused

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  • Worried and confused

    So I finally made it to the urologist after months of doctors and antibiotics for what everyone thought was an UTI. I would only test positive for leukocytes but then when sent off would grow low counts of beta strep. One doc said thats a uti and you treat it normally. Another said that beta strep does not cause uti and sent me to a gyno.

    Finally the urologist thinks that the group b thing is a skin condition and would not cause a uti. So all this time I might not have had a uti? And have been on many rounds of antibiotics. He thinks that at one point I did have a uti and my bladder is just irritated. He did a clean catch urine sample and put be on toviaz. Still waiting for the results. He also did an internal exam and when he touched my bladder it really hurt.

    The toviaz really messed me up. The first night I made it all the way to 5 am without having to get up to go to the bathroom. So I thought maybe its working. But the next day I felt awful I had to pee more yet almost nothing would come out. And this was not normal for me. My symptoms were just a sensitive bladder that would be painful when fill. Having to pee once a night( I would wake up and my bladder would hurt so I would pee to make it feel better) Usually I felt ok unless my bladder was really full but I would have days that I would be in constant pain and peeing more often.

    Anyway also I had some burning when I peed (not everytime) but the burning would hang out for awhile after too. I actually thought I was getting a uti, maybe from the catheter?

    Now I don't know what to think? I guess I will wait and see what happens with the urine sample. I am also going for a bladder and kidney ultrasound on friday.

    I am worried this will never be figure out!

  • #2
    worried and confused

    Hi bii,
    I'm sorry you're having a tough time getting this all sorted out.
    If your doctors still aren't sure if you're having UTI's, maybe they could get a urine sample using a catheter. The nurse who does my instill did that for me before I started the instills, at the request of my URO. My samples kept coming back with bacteria but the lab kept saying that that was due to possible contamination of the sample. I finally had enough and asked for a sample straight from my bladder, which came back no growth. We've done that twice now, (same result the second time). At least I know that what's causing my discomfort is the IC, not an infection so no need to take antibiotics.
    Anywho, just a thought.
    I hope you can get it worked out.
    keep us posted.


    • #3
      worried and confused

      Sorry, that should read bri, not bii!


      • #4
        Its ok. I just had a urine sample through a catheter last week. Still waiting for the results. All this time I thought it was a crazy UTI that would not go away and now it could be possible that I never did have a uti. All those antibiotics!!

        I guess I will have to wait to see what the results are.


        • #5
          So the results are back and negative for infection! Now I am really worried. Why am I in pain if there is no infection. I also sometimes have cloudy urine? Thought this was the infection? Do people with IC have occasinal cloudy pee?

          Friday is my ultrasound so we shall see if that picks up anything


          • #6
            It sounds like your doctor is on the right track. Making an IC diagnosis does involve ruling out other possible problems. I hope you get some answers soon. Not knowing is the worst time.

            Warm hugs,
            Stay safe

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            • #7
              I am waiting for the doctor to call me back with the ultrasound results. The ultrasound of the bladder was sooo painful. I had a full bladder- 2 bottles of water and it was bad. Luckily she let me go before she did the kidneys.


              • #8
                When I went in for one of my first ultrasounds they told me I had to drink water and sit there for an hour until my bladder was full. Really? Because I'm here to find out why I can't hold it for more than 10 minutes so how is that going to work? It was torture to hold out that long. bri, donna is right; the not knowing and waiting for a diagnosis is so difficult. I hope you get some answers and some relief soon!
                Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

                Current medications/treatments:
                Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

                Previous medications/treatments:
                Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek


                • #9
                  Its the worst!! But I guess if there is no other way?!?!

                  I am hoping for some answers too. It has caused me a great deal of anxiety and stomach issues from that.

                  Hoping to get a call today or tomorrow about the results.


                  • #10
                    I talked to the doctor and my kidneys looked fine but my bladder didn't empty all the way. This could be why I had an infection or kept getting them. Yet when he did a clean catch there was no infection. I am confused. I have to make another appointment to see where we go from here. Can't wait.

                    I am now even more confused!!