On and off leukocytes in urine + other symptoms

Posted , 11 users are following.

Okay, so this is my millionth post in the forum I'm sure however I like to document this painfully long journey...

In April time I was diagnosed with my first 'UTI' (culture negative for bacteria) then a month later I was diagnosed with my second 'UTI' (culture negative for bacteria again) also had another culture done that was negative for bacteria when I had leukocytes in urine. So, that's three negative cultures. I can understand one being maybe false negative but three? Seems like it's not just a one off.

So, after experiencing abnormal bleeding and some lower abdominal pain (slightly off topic but may be linked) I had a scan and have been diagnosed with a bicornuate uterus and polyps (possible polycystic ovaries but don't think so) on my ovaries.

For the past three months I have been constantly experiencing floating objects (like flaky bits of toilet paper) in my urine every few days and when this occurs, I test positive for leukocytes. But I can go to the toilet straight after and have a negative urinalysis. I also have been experiencing alkaline and cloudy urine once in a while. I have photos of the flakes in my urine if anyone can relate I can email.. bit gross maybe, sorry!

Anyway, I saw a nurse today and she told me that when she tests people's urine and it tests positive for leukocytes she asks whether the sample should be sent for analysis (she wasn't medically trained so I think she was referring to sending it onto a GP or something) and they always say no unless it has anything else positive (nitrates, blood etc) and she says that she tests her urine and it tests positive for leukocytes sometimes and she is always fine. This reassured me, and may reassure others going through the same thing as me. However, I just want to know what's happening with my body!!!!

If anyone has any ideas go ahead. Apologies for the long post! (Btw I am a 19 year old female)

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  • Posted

    Also this problem is making me incredibly OCD with testing and analysing my urine. It may have always been like this, but now I've just noticed more.

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    • Posted

      Hi Katie,  I know how worrisome this is.....trust me.   So if the culture has come back three times with no bacteria, I would say there is no infection caused by a bacteria.  The white blood (leukocytes) found in the urine could be a contamination from the vaginal area or from the urethra (urethral syndrome).  Are you experiencing any symptoms at all?  Sometimes these show up with inlammation not always just with an infection.....so if you have an allery, or vaginal infection this pops up.  It is quite normal for women to have a few lingering wbc floating in the urine....my urologysit said it is very hard for women to give a good clean urine sample.   The stuff you see floating around might not be from insude the bladder, it could  be from the vaginal area.  
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    • Posted

      Hi again,

      Having a flare up at the moment (cloudy urine, floating stringy particles and WBC in urine) but what's worrying me most is I have some pain in my back on both sides that comes and goes

      I do notice I get this when I get flare ups like this

      I really want to go to the doctors but no one takes me seriously about this and just takes the p*ss when I express worry

      Thing is it'll probably go by this evening/tomorrow?

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    • Posted

      Hi Katie,  Sorry to hear that you have a flare sad .  I would suggest if you are worried then go to the doctors, no one can relieve your fears on here because we can only offer our experiences, we can't diagnose what is causing this.  I would tell your doctor what it is you are experiencing, request to have a microscopic urinalysis done, tell him you feel there is something wrong.....get a complete blood test done and also get them to do a blood test for your kidneys to see how well they are functioning.  It may not hurt to have an ultra sound done on your kidneys and bladder as well.  There could be a fungus, or a heavy growth of candidia, but that usually would show up in a culture.

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    • Posted

      Hello,

      Yes I will bring this all up to my doctor, have an appointment booked for the 16th of August so will save for then.

      I have looked into candida (because of the threads in my urine, I feel like that's what it would look like haha) but the symptoms seem pretty severe and I literally experience no symptoms at all like painful urination etc only the cloudy urine and particles and back pain (whether it's related or not)

      I'm able to tell myself that I think my kidneys would be ok as I have no family history and urinalysis never shows anything other than WBC at a low level. I was told I have a bend in my back but obviously as I have urinary symptoms I would link the two!

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  • Posted

    Hi. I've also tested positive today for leukocytes in my urine as had white clots come out. I've been on antibiotics for ages now on and off. I'm trying to see a urologist as the urine sample has gone to the lab today. Really concerned. Am and a hillard.

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  • Posted

    Also cloudy urine and white clots coming out. Am and a hillaRd.
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    • Posted

      Hi Mandy, just came across your post and thought I would respond since it was just days ago. Wondering how you are feeling or if you have found any answers yet.

      My recent problem started about 6 weeks ago, went to walk in clinic and was negative for infection. My symptoms were frequency, pressure over my bladder and burning after urination. The Dr. gave me Macrobiotic for 7 days cause dips tick showed moderate amount of leucocytes. After 3 days they called and said there was no infection and told me to stop the antibiotics which seemed to be helping. !!

      Symptoms continued to get more severe so I went to my gyn who is treating me for other things to see if this could vmbe related. Another urine sample, this time came back positive for Ecole, prescried Macrobiotic 2 x day for 7 days. Really helped for about 5 days then seemed to plateau . Completed antibiotics 10 days ago and symptoms slowly getting worse again. I gave 3rd urine sample 3 days ago and today they told me neg for infection.

      I'm at a loss at this point, cloudy urine, pelvic pain, frequency, burning, pressure and on and off back pain that just happens out of the blue.

      I also have test strips that always show +++ leucocytes. Waiting for appt with family Dr. , hope you have been feeling better.

      Write back if you like, no pressure!

      Christa

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  • Posted

    This sounds very much like interstitial cystitis. When J had my first UTI, it was definitely real. It took three rounds of antibiotics to get rid of. After that, I had another one or two but we started noticing that my symptoms persisted. They decided to always culture before treating me after that (first ones were cultured). My very wise nurse practitioner referred me to a urogyn to be evaluated for IC because I had persistent UTI symptoms, including blood in my urine, but no infection. I was diagnosed, treated and am mostly in remission. I get flares of my symptoms but nothing consistent any more. Check out the IC Network for info about the disease and maybe to find a specialist. 
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    • Posted

      Hi Lisa

      What were you treated with for IC or new name PBS? I am very interested as I think I have this but as yet have no diagnosis but all the symptoms. Sometimes I will find loads of leukocytes and sometimes none in the space of 24 hours but always have pelvic pain , bladder pain ( as soon as bladder gets new urine in eg as little as a few ml I get pain and then relief from pain after going. ) I have terrible frequency as a result of this.

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    • Posted

      The urogyn that diagnosed insisted on DMSO instills. They were horrible for me and I stopped after just 2 or 3 and found a specialist that was amazing. He was a leader in his field and would have spared me much of the testing that I was put through. Regardless, he did a thorough evaluation and consult to come up with a treatment plan. Pelvic floor dysfunction was a huge part of my problem so he referred me to a special physical therapist. It sounds crazy but she worked wonders. When she was on maternity leave, the person covering was not the same! He also did bladder instills but they were with lidocaine and two other things that I can’t recall. Small amount of fluid but it was soothing as opposed to large amount of fluid that was extremely irritating with DMSO. We tried some medications. Elmiron was the primary treatment at that time but he also believed that there was an inflammatory or allergy component so he treated with hydroxizine. That was a huge help for me. Nerve pain is a possible piece of the puzzle so we tried gabapentin and then Lyrica but they didn’t help much so we stopped. In the end, PT and hydroxizine along with increasing water intake and watching trigger foods got me in remission. I do get flares but they are brief. At my worst, I was in the bathroom as much as 60 times a day and 20 at night (my urogyn made me keep a diary which made me think about it which probably made it worse). I’ve been mostly in remission since late 2008/early 2009. 
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    • Posted

      Wow thank you for this Lisa. I will Google DMSO to look it up. I am also told that pelvic floor treatment is great. I am going to see someone privately. I am on amytryptaline and Betmiga but I don't think Betmiga is helping and the bladder pressure on filling is horrid. T

      I am going to see a specialist so hopefully I will get somewhere one day soon. Louise

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  • Posted

    Hi I have had UTIs since feb. 2018 on and off but now they say is not infection. Possitive leukocytes and blood in urine, pelvic pain, frequent uritaion, and cloudy urine. I went to the urologist and I explained and he recommended a dialation on urethra and he is looking with a camara inside my bladder to see what is going on,I think is called cytoscopy not sure. But I am having the same symptoms as all of you my surgery is on July 17 2018 I will keep you all posted!
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