Vent about drs and white blood cells in urine

[JenAZ07]

Since Dec I have been seeing dr after dr trying to figure out if I have IC or not. I have symptoms-- frequency, urgency, pain, food sensitivities, etc. -- but my tests keep coming back negative. PST-- delayed reaction. Had in-office cysto and hydrodistension w/biopsy-- bladder was pretty and no mast cells. Started Elmiron but hair started falling out by the handful...so I stopped. Take hydroxyzine, but rx the Dr gave me was for 50mg and he said I couldn't take it everyday....so I cut them in 1/2 and take 25mg only on nights I eat something kinda naughty (I pretty much only eat IC friendly foods, but every now and then I have a little of something naughty). I switched drs (to pelvic pain specialist) and after a 2 min exam he said I have pelvic floor tension myalgia (which I figured), but also said I didn't have IC b/c when he touched my bladder (via vagina) it didn't really hurt.

Okay... now, a couple of months later I am still going to PT and my pt gal even thinks I have IC. I am still having food sensitivities (Chinese food shouldn’t bother someone w/o IC, but man was I in a world of hurt and it didn’t bother me a year ago)….and my food sensitivities cannot be explained by anything else. Additionally, since last Oct. every urine sample I give has had a high level of white blood cells in it, but I haven’t had any UTIs. And the drug tests I have been given (via pain dr to make sure I am taking my meds) each keep coming back negative despite my taking my medication – the tests should reveal the narcotic pain meds I am taking, but they don’t!! I just called my pelvic pain Dr to see if they will re-do the PST (not that I am looking forward to that pain again, but they have different criteria for what counts as a positive versus the uro’s office who did my first test), and possibly start the rescue instills. I just want to get better. I already stick to the IC diet (sometimes I cheat, but take prelief w/it), but I am not getting better so obviously need something else. Just so frustrated!! :headbang:

My pain dr (who ordered the last blood/urine tests) refuses to look into the drug test/white blood cell thing b/c he doesn’t want me dx with anything chronic. He says I am too young to have any dx. Well, I am almost 30 and it isn’t too early to be dx with something if that is what I really have!!! The blood tests even revealed issues with my thyroid being underactive, but he doesn’t want to try to stimulate it w/meds b/c he doesn’t want to dx me with anything. He wants me to read a natural-path book on how to stimulate your thyroid w/minerals and meditation….I read all day at work I don’t have time for this!! My pain dr is kinda a quack, :loco: but he does give me pain meds and despite my urine tests coming clean he still continues to give me my monthly script and even increased my dose from what my 1st pain dr had me on-- which I am super thankful for.

Sorry for the long vent, but I know you all know how frustrating this whole process is. Does anyone else have high levels of white blood cells in their urine all the time w/no UTI?

[Charisse]

Jen yes I have white blood cells in my urine almost all the time. I was just falsely diagnosed with a UTI last month because of this and my OB said this is common in IC to see this. For what it's worth. . I had a negative PST too and had been suffering on/off for 7 years prior to finally getting my diagnosis. I was misdiagnosed with UTIs and given antibiotics over 10 times in a period of 6 months in the spring of 2000. I had a real jerk of a urologist who did a cysto and could find nothing wrong with me. It turns out most of my inflammation is in my urethra which is not all that common with IC but my bladder also showed signs of IC when they did the hydro this past summer. I have heard of others here having negative hydros and still having IC. If you ask me, the diagnosis tests are not perfected yet. I have heard that sometimes you need to take the Atarax consistently for a few months before you notice relief. So you might want to start taking the 25 mg every night for awhile and see if that helps. I had some rare side effects that made it impossible for me to take for very long so I never did give it a try for long enough to notice if it helps or not.

[Katrina]

Actually I think white blood cells in urine is somewhat common amoung IC patients. It isn't something I always have these days but did at times. It is one of those things that we scream doesn't mean infection could mean IC.
What I totally do not get is how you are getting negative results on the drug test? I am curious about this mystery.


My pain dr (who ordered the last blood/urine tests) refuses to look into the drug test/white blood cell thing b/c he doesn’t want me dx with anything chronic. He says I am too young to have any dx. Well, I am almost 30 and it isn’t too early to be dx with something if that is what I really have!!!
That totally makes me want to explode!!@#$ My first chronic illness diagnosis was at age 10....and had my first surgery because of that prior diagnosis to save my life at age 12. I strongly agree with you and don't with the doctor that it is not too early to diagnose if that is what you have and to delay diagnosis doesn't help anything it allows things to get worse!!!!

Isn't one of the doctors job to diagnose??? If they refuse to do their job than fire them!

yes to your question and I would pursue the tyroid issue you may be able to get yourself symptom free fixing that. I totally understand you needing to vent I would too...in fact I get quite angry at doctors that think I am too young for something....pretty much feel like, yes I am but that isn't preventing the situation from being what it is so fix it and accept it that things that suck happen to the young!!!!


I have to many upsetting stories about being too young ....that is often when I fire a doctor! :grouphug:

[kuni_bob]

I have a high WBC count, too. Your case sounds very much like IC to me.

If I were you, I'd get a new doctor. My IC first kicked into full swing when I was 20, and I was diagnosed at 22, so I agree that you are not "too young!"