Wee (urine) doesn’t usually contain blood. However, it’s a common symptom in people with ADPKD. About 6 out of every 10 people with ADPKD get visible blood in their wee at times. It’s most common in people with large kidneys or who have kidney cysts with hard walls.

The medical term for blood in wee is haematuria.

In people with ADPKD, blood in wee is most often explained by kidney changes caused by the disease.

The source of the blood can be:

• a kidney cyst that has burst and is bleeding
• sport or strenuous activity (the kidneys of people with ADPKD are prone to bleeding after a knock)
• urinary tract infection, which is more common in women
• a cyst infection
• kidney stone

Blood in your wee could also be caused by a condition unrelated to your ADPKD. These include:

• a non-cancerous problem with the prostate gland in men
• a problem with your blood, making bleeding more likely
• cancer (this is rarely the cause)

Blood in your wee can make it pink, red or brown. You might also see small lumps of blood (clots).

If you have very small amounts of blood in your wee, this might not cause a visible colour change. This would only be picked up by tests.

Some people also get fever or pain in their abdomen (tummy) or back.

If you have a little blood in your wee and no other symptoms, drink plenty of fluids. Look out for other symptoms, such as pain and fever.

See your doctor (GP or kidney specialist) if:

• the bleeding continues
• or you have other symptoms
• or you’re losing a lot of blood in your wee

Even if the problem goes away, tell your doctor — this helps them to look after your kidney health and to decide whether you need any tests.

Other reasons your wee might be pink, red or brown are:

• You have eaten a red food such as beetroot or red cabbage.
• You have not drunk enough fluid and are dehydrated (making wee browner).
• You take a medicine that alters wee colour (for example, rifampicin, metronidazole, nitrofurantoin or phenytoin).

Women on their period might notice a colour change after weeing but this isn’t from the urinary tract.

If you notice a change in your wee colour, consider whether the things above might explain it. If the colour change continues, tell your doctor.

A doctor can check your urine sample for blood by dipping a special strip of paper into it. This is called ‘dipstick urinalysis’. The strip will change colour if there is blood in your wee, even if the amount is very small.

A urine test done at a routine check-up might also detect blood in your wee.

If urine tests show that you have blood in your wee, your doctor may suggest further tests to find the cause. These will depend on the symptoms you have.

For example:

• If you might have a urinary tract infection, a lab can test your urine sample for signs of infection and microorganisms (germs).
• If you have symptoms of a kidney stone or a burst or bleeding cyst, you’ll be referred for a kidney scan.
• If you have a lot of bleeding, a doctor might examine your bladder using a procedure called cystoscopy.

A cystoscopy involves a doctor putting a tube containing a small camera through your urethra into your bladder. You’ll have a general or spinal anaesthetic beforehand. You can learn more about cystoscopy on the NHS website.

Scans used to check the kidneys include computed tomography (CT), magnetic resonance imaging (MRI) and ultrasound.

Common treatments

You can learn about treatments for urinary tract infections and kidney stones on our website.

If the bleeding is from a cyst or a reason isn’t found, it can usually be treated at home by:

• Drinking sufficient fluid. This will help to flush out any blood and reduce the risk of clots, which can be painful to wee out. Your doctor will explain the right amount to drink depending on your kidney function.
• Resting in bed.
• Taking pain killers. Your doctor will explain which ones are best for you.

Don’t take non-steroidal anti-inflammatory drugs such as ibuprofen (Nurofen®) unless your doctor says this is okay. These drugs can harm the kidneys of people with ADPKD.

Your doctor might also prescribe a medicine such as tranexamic acid to help stop the bleeding.

If you usually take medicines that increase your bleeding risk (such as warfarin or other anticoagulants), your doctor may suggest stopping them until your bleeding lessens. Never stop taking medicines without consulting your doctor first — stopping anticoagulants can put you at risk of a blood clot.

If other causes have been ruled out, blood in wee usually gets better in 2 to 7 days. If your bleeding continues, you may need further tests to find the cause.

Treatment for severe bleeding

Most people with blood in their wee lose only small amounts of blood. However, if you’re losing a lot of blood, you might need to stay in hospital to have a blood transfusion and intravenous fluid (a ‘drip’).

You might need surgery to stop the bleeding, but this is rare.

Procedures used to stop bleeding are:

• transcatheter arterial embolization
• nephrectomy (kidney removal)

In transcatheter arterial embolization, the artery feeding the bleeding area of the kidney is blocked. For this procedure, you’ll have an anaesthetic. A surgeon will feed a fine tube into an artery in your groin and up to your kidney arteries.

They’ll place a fine coiled wire into the artery going to the bleeding area. This stops the blood flow.

You’re likely to get some pain and fever after transcatheter arterial embolization (which can be treated), and there is a risk of infection. Ask your surgeon to talk you through the benefits and risks.

If your kidneys are causing a lot of problems, including bleeding, you may need to have one or both kidneys removed. This is called nephrectomy. We explain this surgery on our web page on kidney removal (nephrectomy).

Just to repeat, the vast majority of people with blood in their wee don’t need surgery.

If certain activities tend to cause blood in your wee, you could avoid these. For example, strenuous exercise and contact sports sometimes trigger bleeding. Chat to your doctor about how risky your bleeding is and how important these activities are to you. This will help you to decide what’s best for you.

You can also take steps to reduce your likelihood of urinary tract infections and kidney stones, as these sometimes cause bleeding. See our website for more information on these conditions.

• Urinary tract infections
• Kidney stones
• Pain
• Kidney removal (nephrectomy)
• Draining and treating cysts

• The NHS website has information on CT scans, MRI scans, ultrasound scans, and cystoscopy.