Anyone ever have an unknown cause for gross hematuria?

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.

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

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.

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 

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.

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?

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  

Hi all, I'm not sure if anyone still checks here, but I wanted to add my story to the pile. I've found a lot of reassurance in knowing that other people have suffered the same thing that I have! I am a 25 y/o female, non-smoker.

Five years ago, I got a horrible case of walking pneumonia. What finally sent me to the hospital was the sudden change in my urine -- it was bright pink! I was more concerned about that than I was my pneumonia. Anyway, as it was for many of you, they had no answers. No sign of a kidney stone, no UTI, nada. They sent me home after giving me antibiotics for my pneumonia and told me to go see my local doctor. I didn't (stupid, I know, but I was in the middle of an intense year at university) and the gross hemeturia went away.

Fast forward to two years years ago -- I got a HORRIBLE case of the flu. I caught it from my husband. And just as my illness was getting better, there it was again: the pink urine! This time, I had a total freakout. I went to my doctor who had me undergo a urine test (positive for blood, but no protein). I then got a CT scan with iodine injected into me. I got a cystoscopy (aka, the most painful thing ever done to me). I saw urologist #1, and urologist #2, and the best thing they could come up with was: "I guess it's just sort of like a nose bleed... it happens."

Now fast-forward to today. I just finished having the flu (I'm realizing, as I write this, I get the flu every few years) that left me wrecked with stomach cramps and vomiting and GI problems. And guess what I see again: the pink urine.

God, I'm so tired of seeing it, but I'm trying to just believe that I've done everything that could be done, and there's no sign of malignancy. Years back, my doctor suggested I *could* get a kidney biopsy to see if I have an autoimmune disease of some sort, but my kidneys seemed to be working well when they were processing the iodine in the CT scan, and there's no sign of protein in my urine. So he suggested against it and gave the the same shoulder-shrug that I've always been getting.

I think I just need to accept that, when I get really ill, this is just what my body does. Maybe my stomach cramps just kick my kidneys around a bit too much. Who knows. Anyway, thanks for listening!

Yes I had a gross hematuria and come too find out he did do 2, cystoscopy and a biposy I had 2, red spots which was sent to the lab and checked no bladder cancer was there which was good I still have a blotch that can not be removed it's inflamed and he does not know the reason behind it. He did however since my bladder was small had stretched it and I am glad he did it now I don't go in my pants I can hold it longer I had an appointment last week a follow up it all went well and he told me too come back next year. Sorry your having trouble with who your seeing I would get someone else to see what is causing that that's not normal too keep peeing blood without no reason behind it.

Hi all,

Just wanted to write in with a follow up for anyone else who may be in a Googling panic!  Looks like there is mostly likely nothing wrong with me at all - my bleeding stopped a few months ago and has not come back, either macroscopically or microscopically.  It lasted for about five months in total.  I've been told to check in once more in six months and if all negative then, I'm all clear. 

Doctors are still stumped as to what caused it, their best guess is some temporary inflammation, cause unknown.  I was highly stressed at the time this developed and have had several other psychosomatic ailments over the years, so I believe that's what caused it, although all the (4!) doctors I saw during this journey maintain that stress cannot cause hematuria.  Alas, I'm just glad it's (hopefully) over!

Hi Sue I’m so sorry to hear about this. I’m going through the exact same thing. I’ve got a cat scan a cystoscopy an ultrasound blood work urine test and everything comes back normal. I have no answers and I want to know what is the cause of this. 

Hi everyone, 

I thought I would add my experience to the bunch. I have been experiencing gross hemateria for 4 months now. I am a 29 year old female, and non-smoker. I have had extremely bright red urine for up to 12 days straight in the past.. And then just off and on randomly over the last 4 months.. well over 20+ times total. I have no other symptoms at all. 

I have had X-rays, a CT, multiple urine and blood tests, and an outpatient ureteroscopy (put to sleep). The only thing abnormal found from any tests was a 3 mm kidney stone on in my right kidney. (I have never had any pain.)

My urologist did not seem to think the kidney stone was the cause of the bleeding based on the size alone. The ureterscopy results came back clear, no leasions or anyhing of concern. I had not had noticeable blood in my urine for a few days before this procedure. My doctor told me that the next time there is noticeable blood in my urine, that is bright red, to call and come in to his office right away. He wanted to do a cystoscopy right then in the office to see if he could determine which uriter the blood could be coming from.. hoping to be able to see any traces since he wasn’t able to tell during the ureteroscopy.

Fast forward to the present - yesterday (4th of July) my urine was noticeably red. Obviously I couldn’t go in to the doctor because it was closed due to the holiday. When I woke up this morning, there was still noticable blood, but it was more of a cola color, not bright red. I just got home from the doctor now. I went in straight away like I was told to.. and I had a cystoscopy done. (I will not be turning down the valium next time... yes.. next time. 😩 

Today, after the cystoscopy, my urologist said he believes the blood is coming from the left uriter (stone is in the right kidney), but there wasn’t enough evidence of blood for him to be confident. SO he wants me to come in again for ANOTHER cystoscopy the next time it is “bright” red to see if he can see anything else. He said he can do another procedure, but it’s more invasive and he’d thinks we should try another cystoscopy first. I can’t remember the name of the other procedure, but he said it involves a catheter going into the thigh, and then ink is injected into the kidney from there....

The next time I go in I’m going to ask to be referred to a  nephrologist. At previous appointments my urologist did say that would be the next step once everything else has been exhausted.. I have seen another urologist as well and he agrees with everything my doctor has done so far.

Seeing the information from all of you is a little comforting. At least I’m not alone and know I’m not going crazy! It’s just frustrating going to so many appointments, having different procedures done, but getting no answers 😢

Long shot - but does anyone know if having had Mono a few years ago could later cause any kind of issues like this? Thanks!