Endometriosis fact sheet

What is endometriosis?

Endometriosis is a long-term condition where tissue, similar to the lining of the uterus, grows in other parts of your body. The condition is associated with pain and inflammation.

In Australia, one in 7 women have been diagnosed with endometriosis.

Symptoms of endometriosis

People with endometriosis can have different symptoms.

Common symptoms of endometriosis include:

• severe period pain
• deep pain during or after sex
• infertility
• persistent pelvic pain
• heavy periods.

Less common symptoms include:

• bowel symptoms (e.g. bloating, constipation, diarrhoea or pain when doing a poo)
• feeling very tired
• back pain
• sleep problems
• headache
• urinary symptoms (e.g. pain when weeing or blood in your wee)
• allergies.

Causes of endometriosis

It’s not yet known exactly how and why some women develop endometriosis. It’s a complex condition that depends on the oestrogen hormone. But it may also be influenced by other factors, including:

• backwards (retrograde) menstruation
• genetics (e.g. other family members have endometriosis)
• how your body systems work (e.g. how the immune and hormone systems interact).

How is endometriosis diagnosed?

It can take several years to get a diagnosis of endometriosis. This is because symptoms vary between women, and symptoms can change over time. Also, period pain is often accepted as normal.

Early diagnosis and treatment of endometriosis will help you manage the condition and improve your quality of life.

The recommended way to see if you have endometriosis is with imaging technology, such as ultrasound.

Treatments for endometriosis

Women are more likely to have good long-term outcomes when they get an early referral and help from a specialist medical team. For example, doctors, gynaecologists, surgeons with special training and pelvic floor physiotherapists.

Treatment may include pain-relief medicines, hormone medicines, non-hormone medicines, surgery and combined treatments. Many people use non-medical options to manage symptoms of endometriosis.

Your medical team should consider your symptoms, preferences and priorities when recommending treatment options.

Endometriosis and fertility

Endometriosis may impact your fertility and plans to become pregnant. But not all people with endometriosis have trouble getting pregnant.

If you feel worried or depressed about having endometriosis and fertility problems, talk to your doctor, counsellor or psychologist. They can help you understand the diagnosis and your options, such as fertility treatment.

Living with endometriosis

Endometriosis can affect your physical health and emotional wellbeing. It may also impact your relationships and sexual desire.

A healthy lifestyle, including regular physical activity, a balanced diet and quality sleep, can help you cope with endometriosis.

If you’re experiencing stress, anxiety or depression, it’s important to get help from qualified health professionals.

When to see your doctor about endometriosis

It’s not OK or normal to have severe pain and other symptoms that affect your daily life. If you think you might have endometriosis, see your doctor as soon as possible, as early diagnosis will help you manage the condition.

For more information, resources and references, visit the Jean Hailes endometriosis webpage.