Megan Walsh is Haemophilia Clinical Nurse Consultant at the Ronald Sawers Haemophilia Centre, The Alfred, Melbourne
Blood in the urine (haematuria) can be frightening and it is the one condition that does prompt people with haemophilia to ring their Haemophilia Treatment Centre for advice.
If the blood in the urine is obvious to the naked eye it is called “macroscopic” or “visible haematuria”. If the blood can only be detected with laboratory testing it is called “microscopic” or “non-visible”. Blood in the urine is a fairly common problem in the general population. Up to 16% of young adults experience it and around 21% of men over 50 will experience it at some time.
It is a fairly frequent occurrence also in people with haemophilia. It has been reported that up to 66% of people with haemophilia have experienced haematuria at some time.
The urine can be red or brown in colour, but that doesn’t reflect how much blood is being lost: as little as 1 ml of blood in 1 litre of urine can cause it to change colour. The urine can often be darker brown in the morning as it has been concentrated overnight and it becomes redder during the day.
The bleeding may arise from any part of the urinary system from the kidneys to the bladder and prostate.
There may be many causes of haematuria. Infection is the most common cause; other common causes include small kidney stones passing, vigorous exercise or sexual activity, certain medications, or trauma/injury to the area. It can also be a symptom in older men who have an enlarging prostate, but no cancer.
Very rarely it may be associated with cancer of the bladder, kidney or prostate.
Although you are normally advised to treat at the first sign of a bleed in this case the advice is different.
DO NOT TREAT either with factor concentrate or tranexamic acid tablets.
Talk to your Haemophilia Treatment Centre.
This is important because you do not know where the bleeding is coming from. Treating may cause a large clot to form and block the kidney or ureter (tubes taking urine from kidney to bladder), causing pain and damage to the kidney. It may cause clots to form in the bladder preventing the passing of urine.
You are advised to rest, with no straining or lifting or rushing around.
Increase your fluid intake 2-3 litres per day, but avoid acid drinks like orange juice, tomato juice or highly sugared drinks like lemonade/coke.
Avoid coffee and alcohol.
If you have burning, try using a urinary alkaliser (available over-the-counter from the pharmacy – ask your pharmacist about the different brands) to help make the urine more alkaline.
Discuss what to do with your Haemophilia Treatment Centre. If you have no pain anywhere, no burning on passing urine and are feeling well, and have no history of trauma/injury to the area, no smelly urine, and are not passing clots, it may be appropriate to rest at home with increased fluid intake, and the haematuria usually resolves in 1-3 days. If it does not get better, you may need to come in to hospital to have some intravenous fluids to help flush your urinary system.
Go to a doctor immediately if you experience:
- Pain in the back , sides or abdomen
- Increased blood in your urine
- Smelly urine/cloudy urine
- Pain, burning when passing urine
- Feeling unwell, feverish, high temperature
- Or you have had injury to the area around kidneys and now have haematuria.
- Usually a urine sample is taken and sent to the laboratory for testing to see if there are any bacteria in the urine. If any are found you would be started on antibiotics
- If you have a lot of clots and blood in urine, a blood test would be done to check that you have not lost too much blood
- Any pain would require a scan: either ultrasound or CT scan
- Sometimes a follow up cystoscopy may be required (camera scope to look into the bladder)
- A pyelogram may also be used to investigate further if you have had a few episodes of haematuria (intravenous contrast is injected and is excreted by the kidneys, so a picture of the whole urinary system can be obtained)
- If you have more than one episode of haematuria, you will be referred to a urologist as a precaution to have a further check
- If you are older than 40 you will be referred to a urologist after the first episode of haematuria for a further check.
In rare cases when the haematuria continues and no cause (i.e., infection etc.) can be found, some low dose factor concentrate may be used, but this would be in a hospital situation and in conjunction with intravenous fluids to flush the kidneys.
Haematuria occurs not infrequently in people with haemophilia. It is best not to treat, but you are advised to talk to your Haemophilia Treatment Centre to discuss your own particular medical condition and gain their advice.
Simple haematuria, with no signs of clots, pain, burning, temperature, smell should settle with simple measures such as rest, increased fluid intake in 1-3 days, but a phone call to your Haemophilia Treatment Centre is advised.
Any signs of pain, fever, illness, cloudy urine, or clots require immediate medical attention.
Haematuria occurring in men over 40 should be investigated further by a urologist.
Haematuria lasting more than a couple of days and occurring on several occasions requires investigation.
- NHS Choices. Blood in urine (haematuria). National Health Service: London; Leeds; Southampton, 2015, viewed 22 February 2016
- Quon, DV, Konkle, BA. How we treat: haematuria in adults with haemophilia. Haemophilia 2010 Jul 1;16(4):683-5.
- Yeoh, M, Lai, NK, Anderson, A, et al. Macroscopic haematuria: a urological approach. Australian Family Physician 2013;42(3):123-126, viewed 22 February 2016
Reprinted with permission from Walsh M. Haematuria: blood in the urine. National Haemophilia 2016 Mar; 193:10-11
Reviewed by Megan Walsh, September 2020