Continuous blood in urine .......

Kidney and urinary tract
1

Hi guys I have had continuous blood in my urine which is visible. I have had a range of tests from CT, MRI, cystoscopy, renal artery angio, ureterorenoscopy and also had a stent to see if that works. 

The drs are at a loss I have no stones or other problems that they say it all looks ‘normal’. I’ve had protein and white cells and of course red cells in my urine for a year and also have to have antibiotics a lot of the time due to recurrent infections. The next stage is to do a super selective angiogram has anyone experienced this before ? They have also said I do have some mild inflammation in my left kidney. I would be really grateful if anyone has had this sort of thing to shine some light for me ? 

Many thanks !!!

2

Hi Josh

Have they considered Thin basement membrane disease,? TBMD ?

This is usually diagnosed by kidney biopsy. Are you seeing a nephrologist??

Is your kidney function i.e EGFR normal?

The other thing to consider is prostate disease.

Hope you find a cause and it is not too serious!

3

They haven’t done a biopsy as of yet. Kidney function is normal I’ve done a 24 hour protein which they said only showed low creatinine. They have checked my prostate and reckon all is ok. Just getting seriously fed up with having no answers as to why it’s making me sick etc. Thank you for your reply

4

Ok .. so the Thin membrane disease can produce these symptoms and as far as i know as long as your kidney function is normal it is a disease you can live with which causes no serious health problems.

Are you actually feeling unwell??

Have you considered the sexual health tests? Im sure you have but just throwing some ideas out there.

It is really frustrating when they cant find anything. I have similar prob and am being investigated ? The thin membrane disease as i have invisible blood in urine, however my kidney function is decreasing.. but I feel completely well..

Have you had the blood tests for immune problems?

5

P.s ... have the urine tests actually identified a bacterial cause?

Maybe the inlammed kidney is infected and the antibiotics are just not eradicating the infection completely?

If it was something like MRSA that may be very difficult to get rid of..

Again im sure this has been investigated too

Drink plenty fluids and I really hope you get some answers soon x

6

I’ve had sickness and been feeling unwell for some time. I had all the checks and it’s nothing to do with sexual health. I’ve been on antibiotics for a while as I keep getting recurrent infections. I’m drinking lots of water and eating the right things. If I am still having a lot of blood in 2 weeks their plan is to do a super selective angiogram 

7

I'll keep looking for some possible answers if i come up with anything I'll let you know.

Sounds like everything is being looked at I really hope you find out soon its horrible to keep feeling unwell and worse not knowing the cause .

Good luck and keep us informed.

8

I just want to ask though, are you taking any kinds of medication? Some of the medications actually make your urine turn to red orange to red . My friend was really freaking out on her urine but she was taking rifampicin.

If not it could be in some kind of nephritis , you should see a specialist.

9

Not on any medication. I’ve had a scan on the Tuesday and they have contacted me to say I have mild inflammation aswell and they ‘think’ the bleeding is coming from the left kidney and they are going to get me in on the 18th to see a specialist and go from there