Interstitial Cystitis Expert Forum
recurrent cystitis with negative sample tests
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Questions in the Interstitial Cystitis. forum are answered by Dr. David A. Burks, MD from Henry Ford Health Systems.

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recurrent cystitis with negative sample tests

I have had recurrent cystitis over a period of 8 years. The infections tend to coincide with an episode of thrush (although not always) and only leave with antibiotics. If I don't take antibiotics the symptoms are unbearable to the point where I cannot think straight and end up sitting for hours on end in a bath or on the loo and sometimes it gets so bad that I'm weeing blood stained urine. Sometimes I go for months at a time where I feel like there is kust something "Brewing" or as my husband calls it "bubbling under" where I don't feel I can get antibiotics. When I take samples in for testing the G.P generally finds blood or cells but when a sample goes to the lab it is almost always negative. What is going on? Before I got pregnant with my first son (over 2 years ago) I was referred to a good urologist in the hospital where I work and he prescribed a low does of nitrofurantoin for a period, I then got pregnant and was fearful of infections during the pregnancy but thankfully got none and none after my baby was born either but they have recently started rearing their ugly head again with again negative samples. It does make you feel like you're going mental but when the symptoms are as real as they are (again weeing blood) what are you supposed to think? Can you advise me of what could be happening (please don't give me the usual list of things to do as I am a health professional myself and have been doing them anyway prior to even starting to get infections). Any idea what could be the answer as I don't think I'm the only one who can say this is the case.
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Hi, Unfortunately you have a very common problem.  First, you have recurrent bacterial infections that respond to antiboitics.  You are symptom free on prophylactic antibiotics.  Then off antibiotics the symptoms return but the urines are now negative for infection.  This is how Interstitial Cystitis often starts, with a bladder injury from chronic or persistent infections, now symptoms are persistent with a negative culture.  First, make sure that urine cultures were in fact negative for bacteria.  You need to see a Urologist for a cystoscopy.  Hematuria without an infection demands a work up to rule out a stone, tumor or other cause of bleeding.  IC patients usually don't have gross bleeding from their bladder.  If the cystoscopy is negative and a x-ray of your kidneys is normal, you either have a chronic infection inside the bladder wall that will take months of antibiotics to clear, or intestitial cystitis.  Go to the Interstitial Cystitis Association (ICA) website:  ichelp.org to look at the work up for Intersitital Cystitis.  First, do the ICA diet plan to remove the bad things in your urine that are making the symptoms worse. You need a Urologist who is familiar with and treats patients with IC.  Not all are willing to take on this disease.   Good Luck, ------------ David
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