Bladder Endometriosis Symptoms: Signs, Tests and Next Steps

The most common bladder endometriosis symptoms are needing to pee more often, pain when peeing, an urgent need to pee, trouble emptying your bladder, and blood in your pee. These symptoms are often worst in the days before a period and during it.

Pee problems that come back with your period are a reason to ask about endometriosis. This guide explains what the symptoms feel like, how they differ from a UTI, how doctors find bladder endometriosis, and what to write down before your appointment. It is general information. Your own doctor decides what is right for you.

What is bladder endometriosis?

Endometriosis is when cells similar to the lining of the womb grow in other places in the body. These cells react to the hormones of the menstrual cycle, which can cause inflammation, pain and scar tissue.

In bladder endometriosis, this tissue is on the bladder. It can be on the outer surface of the bladder or deep inside the bladder wall. Endometriosis of the urinary tract is not common. It affects an estimated 0.3 to 12% of people with endometriosis, and the bladder is the site in about 85% of these cases. It is more common in people who have deep endometriosis.

Common bladder endometriosis symptoms

Peeing more often and urgency

You may need to pee more often than usual, in the day and at night. You may also feel a sudden, strong need to go that is hard to hold. These are among the most common symptoms. Some people also leak pee, but this is less typical.

Waking up at night to pee can break your sleep. Our guide to endometriosis and insomnia has more on sleep.

Pain when peeing and bladder pain

Pain when you pee (dysuria) is the typical symptom of bladder endometriosis. It can sting, burn or cramp. You may also feel pain or pressure low in your tummy, just above the pubic bone, that gets worse as your bladder fills.

Trouble emptying your bladder

You may feel that your bladder is not empty after you pee, or need to go again soon after.

Blood in your pee

Bladder endometriosis can cause blood in your pee. Blood in your pee that comes with your period, or pain when you pee that comes with your period, is one of the signs that should make a doctor think of endometriosis.

Period blood can also get into a urine sample and look like blood in your pee. Tell your doctor where you are in your cycle when you give a sample.

Kidney pain (rare)

In rare cases, endometriosis affects the ureters, the tubes that carry pee from the kidneys to the bladder. This can cause kidney pain. A blocked ureter often causes no symptoms, so doctors check the kidneys with a scan when they suspect endometriosis in the urinary tract.

Other endometriosis symptoms

Bladder endometriosis often comes with endometriosis in other places. You may also have pelvic pain, painful periods, pain during sex or bowel symptoms. Our endometriosis symptoms guide covers the full list.

Some people have no bladder symptoms. Bladder endometriosis is sometimes found by chance during a test or operation for another reason.

Bladder endometriosis or a UTI?

A urinary tract infection (UTI) can cause pain or burning when you pee, needing to pee more often or more urgently, and blood in your pee. These are the same symptoms as bladder endometriosis. So the first step is often a urine test to look for infection. Doctors also need to rule out interstitial cystitis, a long-term bladder pain condition.

Bladder endometriosis can also show up as repeat UTIs. Two things point away from a simple infection:

• Your symptoms come back around your period, month after month.
• Urine tests do not find an infection, or antibiotics do not stop the symptoms.

If you get 2 UTIs in 6 months, or 3 in 12 months, ask for an urgent GP appointment or get help from NHS 111. Say if the symptoms follow your cycle.

How bladder endometriosis is diagnosed

Your doctor will ask about your symptoms and examine you. This may include a vaginal examination. Tests can include:

• Urine test to look for infection.
• Transvaginal ultrasound. This scan is offered to everyone with suspected endometriosis, even when an examination is normal. It can show deep endometriosis that involves the bladder or ureter. For the bladder, the scan works best through the vagina, but it can miss small nodules.
• Kidney ultrasound to check that pee is not backing up into a kidney.
• MRI, which can help find deep endometriosis that affects the bladder or ureters.
• Cystoscopy, where a small camera looks inside your bladder. A nodule under the bladder lining can look like a raised area on normal lining.
• Laparoscopy, where a small camera looks inside your tummy.

If endometriosis on the bladder or ureter is suspected or confirmed, NICE says you should be referred to a specialist endometriosis service. Our guide on how to get diagnosed with endometriosis explains the wider process.

How it is treated

Bladder endometriosis is usually treated with surgery, which can confirm the diagnosis and remove the endometriosis. Surgery is not the only option, and the decision is yours. Hormone treatments can control symptoms. These include contraceptive medicines and medicines that mimic the menopause.

When to see a doctor

• See a GP if you think there is blood in your pee. Do not try to work out the cause yourself.
• See a GP if pee symptoms come back each month around your period, or if UTI treatment does not help.
• Ask for an urgent GP appointment or get help from NHS 111 if you have UTI symptoms and a very high or low temperature, shivering, pain in your back just under the ribs, or symptoms that do not get better within 48 hours of treatment. These can be signs of a kidney infection.
• Call 999 or go to A&E if you are confused, drowsy or find it hard to speak.

What to track before your appointment

Bladder symptoms are easy to blame on a UTI. A record of when they happen helps your doctor see the link to your cycle. For each day, note:

• How many times you pee in the day and at night
• How strong the urge is, and any leaks
• Pain when you pee, and pain or pressure above the pubic bone (score it 0 to 10)
• Any blood in your pee, and the day of your cycle
• Urine test results and any antibiotics you took
• Other symptoms, such as pelvic pain, painful periods or bowel pain

Bring two or three cycles of notes if you can. Our guide to a pain diary doctors will read shows how to keep it short. The Endolog endometriosis tracker app lets you log bladder symptoms against your cycle and share a report with your care team. You can also print the free period and symptom tracker, which has a row for pain or blood when you pee.