DH - Blood in urine - not bladder, kidney or prostate. What is causing it?

[Ohlife2020]

As the title says:

Lots of blood in urine started four weeks ago. Since then, it's not as visible, but still ongoing.

DH has seen the consultant today: ultrasound, cystoscope and PSA screening all clear. A tiny kidney stone unlikely to be the cause. No infection either.

What could this be? I'm desperate searching online and wanting to cry.

I can't unload this in RL to anyone...

I don't know if rectal prostate exam has been done. Cystoscopy was done right before he saw the consultant himself.

Can several UTI test come back negative but inaccurate?

He has no pain anywhere. Going to loo as usual. Just weak. And he's also been coughing for nearly two months! I don't want to overthink, but I'm getting ready paranoid and stressed out.

He needs to push for more prostate investigation.

And now I start thinking, if they couldn't find an obvious cause, does it mean that it's something very rare and serious???

Have they considered autoimmune things like Vasculitis which can cause blood in urine?

Female here but had a significant flare a number of years ago - in the lead up had cough, blood in urine (didn’t realise at the time), lethargy, no appetite, weight loss etc. Could be worth a consideration?

Rectal prostate exam is a finger in his bum, he'll know if they did it. I wouldnt get paranoid yet - the MRI would not be in several weeks if the consultant though it could be anything serious - but would be thinking about asking if the gp would prescribe a longer course of antibiotics. Was the ultrasound just a normal scan of bladder and kidneys or did they do a transrectal scan of his prostrate? www.privateultrasoundscanslondon.com/scans/well-man-scan/prostate-ultrasound-scan-transrectal/

That was just to give you an example to show you what a rectal prostate ultrasound is, a normal bladder/ kidneys scan doesnt really show the prostate. There will be lots of places that do private ultrasound if you wanted to get more information.

Did the ultrasound cover his kidneys? I would expect the ct should be performed urgently under the 2 week wait rule. Talk to GP and ask if it is booked as urgent 2 week wait. Then call the scanner Centre and make it clear you're available for last minute appts and can attend immediately. I did this and was scanned same day

Sometimes he has an infection sometimes no infection shows on the dipstick.
My DH has the chronic type so it's comes and goes. Over 5 yrs he had 5 flare ups.
He was referred after blood was showing after antibiotics.

What was the ultrasound looking for?

My brother (not in the UK) had blood in his urine one night a few years ago. The next morning there was just a little bit but his wife made him go to the dr. He was immediately sent to hospital given a scan (CT I think) and diagnosed with kidney cancer. I would press the dr to write a referral for a CT scan under the 2 week wait rule.

My brother’s tumour was 8-10cm but, if you have to get cancer, kidney is a good one. Your kidneys are in a sac and even though my brother’s tumour was bigger than his kidney the sac was still intact. He had his kidney and the tumour removed, no chemo or radio needed and now just gets an annual check on his other kidney. He said he had back ache on that side sometimes but just put it down to getting older. He was about 53 when diagnosed.

https://www.nhs.uk/conditions/kidney-cancer/symptoms/

My husband had blood in his urine on and off over several months, he had lots of blood tests, ct scans, rectal exams, antibiotics etc, they found a slightly enlarged prostrate but no cause of bleeding found, they said he had possibly burst a blood vessel.

Hi may I ask how long this lasted - the bleeding and his overall being unwell? Was he treated after this was found?

@Choux the ultrasound is to establish if there's anything easily visible. CT can see more details and spot smaller abnormalities. That's how I understand.

But he's not pain when passing urine and no change in frequency or anything.

I would really try not to panic too much just yet. It sounds like they are doing the right things. (I say this as someone with cancer, which I imagine is the thing you are worried about, who has a lot of these investigations regularly). A CT scan in a few weeks is pretty standard for these sort of things. It’s not months. When they knew 100% that I had cancer (and quite an aggressive sort), my CT scan was in about a week, maybe a bit more.

Has he had other blood tests? I assume everything came back normal, things like ESR, white blood cells, C-reactive protein? Those things would flag up infection and inflammation. If nothing weird, that’s a good sign. Have you told them about the overall feeling unwell and the cough? I would want to know what the CT scan would include. They will obviously do pelvis, but I would want them to also do up to chest.

Another thing I found really helpful was to get the consultant’s secretary’s phone number or email and I would call or send through updates. So if I got a new symptom, I’d email her and ask a question about it or ask that it be flagged in my notes. It meant they had literally live updates from me and it made me a bit annoying. I’m fairly certain that this is why my biopsy got rushed through. I went from an 8 week wait for results to magically they were ready the next day. Be the squeaky wheel. Hope you get some answers soon.

Oh, one more thing I thought of, I assume they’ve done all his kidney function tests? Creatinine, eGFR?

Are these blood tests? If so, I think they were included. He's done some more today, but I don't know what's included.

@mindutopia Thank you. Hope you got the right treatment and have fully recovered.

He told me this evening that he mentioned to the doctor that his middle left abdomen is sore. It's colon and intestine area.

Now I'm worrying if they would do the CT for all area, not just urinary system, because this is with urology department right now!

And I looked up, the person he saw was not the consultant himself. He didn't even catch his name...

I think the bleeding lasted several weeks, he was referred for tests and got an appointment within the 2 week window, they seemed to do every test imaginable, very thoroughly, but couldn’t find anything wrong so no further treatment, the bleeding stopped after a while and he’s had no problems since, fingers crossed for you 🤞

Several months without knowing the cause. It must have had been very stressful in that period for you all.

Did he feel anything other than blood in urine at all? Any pain or feeling unwell?

He was very worried, he does suffer from diverticulitis so had bleeding from the rectum, stomach pain etc anyway, and to be really honest, he does need a lot of ‘attention’ when he is unwell 🙄 but the tests were so thorough he felt reassured after the first appointment that if anything was wrong it would be dealt with quickly.

Our son had testicular cancer diagnosed when he was 26, again the tests and treatment were fast and thorough and he recovered quickly, we all fear the worst but luckily most problems are treatable, waiting for a diagnosis is the hardest part.

Does he have the NHS app? If you have full access you can see his blood results and notes etc if you’re uncertain of what’s been going on.

@Rattysparklebum thanks for taking time to reply! It's a relief in both cases, especially for your son. It's very lucky they caught it early.

I know most people highly praise NHS in terms of cancer diagnosis and treatment. But I just can't shake off this little bit of distrust deep down because of lots of poor experiences with the GP surgery and etc. It feels like having been two months not one since this first happened. I thought he'd get a clear picture today, but again have to wait more...

Sorry. Just can't bring this up to anyone in RL. My chest felt so tight the entire evening.

Yes, he does. Nothing from today yet. Previous results all within normal range.