Anyone ever have an unknown cause for gross hematuria?

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I am undergoing evaluation for 3 gross hematurias and 5 positive blood dip sticks over the last 4 years. The cystoscopy (which was the worst thing ever btw) was negative. He saw nothing in my bladder and said GREAT NEWS!... now ct of kidneys and pelvis are negative and he is telling me this is great news and I have benign gross hematuria. When I google that it's not even a thing. I just can't except that my pee has been bright red multiple times with positive dip stick and it's just for no reason. I want second opinions but I've gone broke getting the first opionion! Not to mention, I never want to have a cystoscopy again as long as I live!! Anyone out there ever been diagnosed with benign hematuria or unknown cause? Btw, I'm 32, female, non smoker.

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  • Posted

    First, I'm sorry to hear about your pain. Where you awake with the Cystoscope? Was your CTSCAN abdominal and pelvic? What was the doctor looking for. I just had a CTSCAN for abdominal and pelvis and scared about results. I wish I had answers for you. I appreciate if you can help me. Thanks. Michelle.

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    • Posted

      I was awake and they didn't numb me sad. I literally have like ptsd from it. I don't mean to scare you if you have to have one. Some people say they had no pain. Yes the ct was abdominal and pelvic. They were looking for cancer, stones, any abnormalities that may be causing me to have to pee blood. They have found nothing and he just said it's benign hematuria. I can't believe the blood can just be for no reason. That just doesn't make sense to me. When I google benign gross hematuria I find literally nothing about that. My gut it telling me to get a second opinion, but like i said, I can't afford another opioniom as my medical bills are insane right now from the first opinion. Plus, the thought of another cystoscopy about sends me into a mental breakdown. That's why I'm trying to find someone out there who had a story like mine. Maybe if I can see other people pee blood with no sinister reason then I can relax. I hope they figure it out for you, and if you need a cystoscopy, don't let my post scare you. Get it done because it might me painful but it's better than letting cancer go unnoticed!!

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  • Posted

    I have and so does a certain per cent of the population. It's not common but it's not rare. Asymptomatic hematuria resulting in serious urologic disease is age dependent, and I've read that most serious incidents in women are in the over 70 population, so I would think your chances at age 32 are extremely low.

    You should probably be followed up but that doesn't mean you need another opinion right now unless you don't have confidence in your urologist. Other than that,  I would just breathe a sigh or relief and be happy they didn't find anything.  Sounds like you've had the standard tests to rule out causes.

    People react differently to cystoscopy, but if it was really an ordeal you should be asked to be put asleep if you have one again.  A good and responsible physician should respect your request considering your past experience. I'm a male, a generation older than you, but the same principles apply.

    Jim

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    • Posted

      Hi how are you? I'm a 53 year young woman. I've been experiencing periodic pain in my abdominal clitoris area for two months. I've had a transvaginal ultrasound which reveals small cyst in my uterus and small cyst in my ovary. Then I saw a Urogynecologist, I took a urine culture it was negative. Just had a CTSCAN without contrast for abdominal and pelvic diagnosis Hematuria. I'm terrified about the results. What percentage could I have kidney stones in my abdomen or kidney or by my bladder? You opinion is appreciated. Michelle

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    • Posted

      Hi Michelle,

      Sorry, but I am not very familiar with the conditions you describe. What I can say is that it's normal to be scared during the diagnosis process. Human nature seems to make us think the worse even when the odds are in our favor. Hopefully everything will work out OK for you. Meanwhile try not to stress too much.

      Jim

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  • Posted

    I had al of it done cystoscopy was easy did not much care got the cold soap bath,ct scan found nothing for the gross blood and the blood found in a urine test months later.   The only thing it could have been for me was I was on amoxicillin at the time so now I just don't take it and thank goodness my dr did not find a thing for me to worry about case now closed.

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  • Posted

    Sue I have just been diagnosed the same as you, with negative cystoscopy (I was put to sleep for this) renogram and Ct scan.  I too am confused but I plan to have another urinalysis in 30 days 
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  • Posted

    Sue,

    Have you spoken to a nephrologist about this? I'm assuming your kidney function must be normal if they haven't referred you already.

    However, ask about IgA Nephropathy. This is an autoimmune kidney condition and it's hallmark is constant blood on dipstick testing and obvious blood/dark urine usually after or during a cold or cough-type virus. If this sounds like it could be relevant I'd urge you to raise it and push for a referral to a nephrologist.

    I was in a similar situation to you and was made to go through rounds of urological investigation, blood work, ultrasounds and x-rays before I self-diagnosed, pushed for a nephrologist referral, got one and they said it was basically a hallmark case.

    My kidney function is normal and for most people, this is a benign condition, but that said, kidney function does deteriorate in a minority so it's so important you are monitored if you have it.

    It may be completely unrelated, but I was going crazy trying to find an answer this time last year, and that was my answer.

    Wishing you all the best 

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  • Posted

    Hi,

    This is interesting. I've just been evaluated after a single episode of gross hematuria. I had a full work up, prostrate, testes, bladder with cystoscopy, biopsy of bladder lining, ultrasound of kidneys and bladder/prostrate and a CT of abdomen and pelvic area with and without contrast. Also kidney function blood test and urine tests.

    All came back negative aside a cyst on my liver which is benign and could have always been there. While all this is reassuring I'm still thinking about what caused it. I have asked the consultant whether I need a follow up in say, 6 months. (Oh, the cystoscopy while not something I'd want every day wasn't as bad as I expected)

    I do exercise a fair bit and had just done an 8 mile brisk walk but I hadn't just run a marathon so exercise induced is probably not the cause.  

    As a precaution and for my own peace of mind I have bought some urine strips that identify non visible blood just to monitor if there is a recurrence that I can't see. 

    Also, as to symptoms, I haven't had any aside the bleed. I do get periodic flank and lower ab pain, say every couple of years for a month or so but I've had this for 25 years plus and had an ultrasound a few years ago which was fine as were the most recent investigations. 

    Also in some papers I've read on the net it seems that up to 50% of gross hematuria are unexplained and in follow ups over 10 years or so of a study of 146 patients, 13 died from unrelated causes and only 1 presented with a tumour that was urological, and this had been missed on the original CT. That in itself is reassuring, even though this was only one study.

    I can't add anything else aside, don't be put of by the thought of a cystoscopy.

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  • Posted

    Hi all, I'm having a similar situation.  I'm a 30 year old female, nonsmoker, and have 5 instances of gross hematuria in the last 6 months, and I've had microscopic hematuria on every test I've taken in this time.  I've had a CT scan, an MRI, a cystoscopy and urine cytology done - all negative for cancer, and reviewed by two different urologists.

    My family has a history of autoimmune disease so one of my urologists referred me to a nephrologist, thinking IGA neprhopathy.  But the nephrologist wasn't sold on that (no protein in pee, normal kidney function in bloodwork). He's now sending me back to a third urologist to do a ureterscopy, as he's unsatisfied with there being no definitive answer for the blood, supposedly looking for more cancer...

    Does anyone know if it's plausible I could still have cancer that was missed, after all these tests?  The nephrologist also mentioned nutcracker syndrome or a renal AVM, but wouldn't those have been found on the CT scan?  Or could I simply have nothing nefarious going on at all...?

    Sue, did you ever get an answer to what was causing your situation?

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    • Posted

      Brooke,

      Did your nephrologist explain why he or she has seemingly ruled out IGA? It’s not necessary to have protein or decreased renal function - the hallmark is constant microscopic hematuria, and sometimes macro episodes usually after a cold or cough. Research it and push for another opinion. If it is IGA you are in an excellent position with great renal function and no protein. 

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    • Posted

      For context, I have IGA with perfectly normal renal function and a very small protein leak, but constant microhematuria 
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    • Posted

      Brooke

      I had gross hematuria with blood clots and I as well had all the test and blood work done, they did find the cause of mine which was inflammation of the bladder wall which was confirmed with a biopsy.  I have autoimmune diseases, RA and fibromyalgia

      And while no cancer was found since I do have the inflammation of the bladder wall I will now have to be monitored every three to six months to make sure it stays that way

      Debbie

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    • Posted

      Hi Emily,

      Thanks for responding!  My gross hematuria started this past fall, at the beginning of a 6 week bout of a cold that developed into bronchitis (which could suggest IGA), however I've had 4 episodes since then that were unrelated to any illness.  The nephrologist said that it's more likely to be a structural problem causing the blood than IGA but I don't know what he based that on. 

      My third urologist has given me the option to do a ureteroscopy to continue looking for the source, but I'm reluctant as the procedure is fairly invasive.  He said it was up to me, however all doctors have said there's still a small but plausible chance I could have cancer in my ureters that the scans missed, so it's a frustrating and difficult decision.  Otherwise I was told that all the other things that could be causing it are not immediately life threatening, in which case I would not be rushing to get the test.

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  • Posted

    Hello Sue -- your post is old, so I hope that by this time (February 2018) you are doing better.

    I had a microhematuria that was 10 times the normal limit, and after all the tests, there was no cause found.  

    If you check the Georgia Urology website www.gaurology.com/condition/hematuria, you will find that they say: "Common causes for hematuria include - 'Idiopathic, no cause found' ".  They also say "In many people, blood in the urine is not a sign of significant disease, and no cause is found."  Later on, the page indicates: "

    even if no specific cause of the hematuria is found, some form of follow-up may still be necessary, as studies have shown that a small percentage of urologic cancer are later discovered in patients with negative work-ups." 

    So, the best thing is to have a discussion with your urologist and set up a schedule for some follow-ups.  

    I hope this helps!  Best regards,

    Alan 12675  

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