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not diagnosed and not sure if I have IC

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  • not diagnosed and not sure if I have IC

    For the past two years I have been getting what I thought was UTI's every month or two my Doctor was doing testing for this and I did test possitive for this but he would give me meds for it and it would go away but only to return again and again and again...... I read about IC in a woman's mag. and thought maybe this could be my answer. I have also had cystoscopy done and the Doctor told me there was nothing wrong and he gave me more med's. I was almost thinking that he thought I was going crazy. I did read the handbook at this site and it made me even more confused but also hopefull that this might be my problem all along. I'm not sure if I should bring up IC with my doctor or what? This is all so confusing for me and I hope maybe you can give me some hope.


  • #2
    Your smart to be researching your symptoms on your own. I too have recurring UTI's documented by cultures but I also have I.C. which can sometimes feel like an infection. I'm curious to know what kind of test he's done. If it's just a dip test it could show elavated blood or protein and most dr. think that indicates an infection. I always have blood that shows up on a dip test but if it doesn't have an elevated Nitrites or Lucicytes it's not usually diagnosed as an infection after the culture comes back. I would insist on getting a culture everytime you think your getting another infection. If your getting that many doccumented infections than your dr. should be doing some tests to rule out other causes such as urethral strictures or obstructions and many other possible causes. Are you seeing a urologist? If not you should find one that you feel comfortable with. I left my first Uro because he just kept giving my antibiodics and telling me to come back when it hurt again. He turned out to be a real jerk when I started questioning him about needing a cystoscopy or other tests to explore the possibility of I.C.

    If you haven't had an IVP or urodynamics testing also known as a CMG you should request them. If he did an office cystoscopy this would not show the glomerulations found in I.C. In order to detect these your bladder must be filled with water and stretched or hydrodistended. This has to be done under anthestisia.

    It sounds like you need to consider locating another dr. if this one doesn't offer any more tests. You deserve to be treated and to find out what your diagnosis is. Always trust your gut!

    I hope this has helped some. It's difficult in the beginning to take all of this in. Keep searching for answers and you will find one.

    Rachel hi


    • #3
      Are they doing cultures to be certain you are taking the most effective antibiotic? If all of your symptoms are accompanied by verified infections, that may be your entire problem.

      Some suggestions you can try to help keep from getting infections: Take only showers instead of tub baths, wear cotton underpants and if you wear panty hose, snip out the crotches, use plain white, unscented toilet tissue and blot (don't wipe). Also, you'll want to be sure to drink enough water.

      Sending healing thoughts,
      Stay safe

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      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.

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      • #4
        Thank you both very much for answering back to me I didn't think anyone would being the first time I ever went to a site and did something like this I did not know what was going to happen. It took me about an hour just to type what little I did as I did not know what to put down what to say and as I read about other women with IC I was thinking that my problems seem so little compaired to everyone.
        Yes Rachel everytime they did tests on me there was elavated blood and protein and I have seen a urologist and the test he did was filling my bladder to see if anything was out of the ordinary but he said everything was fine (but this was not done under unthestisia) and he gave me levofloxacin and told me if I feel an infection just to take 1 pill and it will be gone . My whole visit with him took about 20 min. (I don't know how the medical system works in the states but in here no urologist will see you without a referal and we only have one urologist in my city) Well when I felt one coming on I took one and NO it never went away and when I called him he just said to take a few more and it will go away and It did after about 4 days. My family doc also gave me nitrofurantoin (something new he said might work)but like other times it did not help.
        Yes Donna I have tried all of the stuff you suggested but I still get the infections (and I would really LOVE to take a hot bubble bath).
        But thank you so very much to the both of you as next time this happens I am going to suggest (or demand) some of the tests you both suggested. As well thank you for being there and taking the time to answer me and for letting me go on and on and on.......(lol) and I will keep coming back and will keep you informed about me. So once again THANK YOU FOR CARING FOR A COMPLETE STRANGER!!



        • #5

          Bless your heart! I certainly understand your frustration. At the least I would insist on a culture BEFORE you take any antibiodics each time you feel that you might have an infection. It's important to establish whether its an actual bacterial infection or it just feels like one. Like Donna said the culture is also important to detect what kind of bacteria is present which determines what antibiodics will effectively get rid of it. You may just need to get the right antibiodic for a round or two until it is gone and then maybe take a low dose to prevent them. Unless you get a culture you will never be sure whether or not its actually an infection. I think that should be a good starting place to address with your dr. My dr. was very surprised when he looked at how many cuture doccumented infections that I had in just 3 mo. last year. I went on a low dose for a while and then went 8 months with out one. I just started getting a series now of 3 infections so I'm going back to a low dose of antibiodic after I get rid of this one. Since I.C. can feel very much like an infection my dr. insists on getting a culture from me. It's a pain to drive there and pee in a cup but at least we know what we're dealing with. Prior to this dr. I think of my previous 3 dr. only 1 or 2 cultures were taken over the period of a year and after over 12 treated infections. I won't ever know how many were bacterial because I rarely got cultured. I hope this will help you talk with your dr. about your next step. You definitely need to get to the bottom of this.

          I thought of something else that might help you too. In the time from when I first feel an infection until I give a culture and get an antibiodic I take pyridium (turns pee orange) or urell ( turns pee blue-green) to help with the burning and spasms. It doesn't mess up the culture, which I used to believe, so don't wait take something quick for the burn. We have over the counter versions of pyridium here a pharmasist might be able to tell you if they're available.
          Please either post to the board or PM me how your doing.

          Rachel grouphug


          • #6
            hi Hi Sherri ! Welcome to the boards,Your story sounds to much like mine. Please read the patient hand book.You will find it on the main page. IT TOOK ME 2 YEARS AND 3 UROS TO GET DIO!and I had to wait 6 months to get in to see them. Being in a large city like Toronto!Ive learned more here than any Uro Ive seen! The women here are so helpfull and understanding.Men as well!Keep us all posted how u are doing, All The best to u, Sandra grouphug grouphug


            • #7
              welcome to the icn i know how scary it is to not know what is going on with your body. we are here and we understand. you are on the right track trying to figure out what is going on with your body. I also get mthly uti. and don't know why the mainly come around the time right before my mthly starts. i was dx with ic in 2001. I wish you luck in finding your asking and sending your prayers hope and good wishes. grouphug
              Medicine taken daily or as needed:
              1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
              2. MS.Cotin 100mg 3x daily
              3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
              4. Fentanyl 100 mg Change every 48hrs.
              5. Gentamicin 80mg install after each rescue treatment
              5 Leviquin 500mg self start as needed.
              6. Klonopin 1 or 2 daily as needed.
              7. Prosed/DS as 1 every 6hrs as needed.

              I have IC, but IC doesn't have me anymore!


              • #8
                I went through the same thing, when my doctor finnally sent me to a uro he told me that all the test my other doctor said showed that I had a uti, well they didnt they where normal that's when he tested me for IC
                GOD, grant me the serenity to accept the things I cannot change, Courage to change the things I can, and the wisdom to know the difference.