Endometriosis fact sheet

What is endometriosis?

Endometriosis is a condition where cells similar to those that line the uterus are found in other parts of the body, mainly in the pelvis and reproductive organs. This condition may cause different symptoms and it can affect your fertility. Most people have good long-term outcomes when they have an early referral to a health clinic and receive care from a medical team with specialist training in endometriosis.

Symptoms

Endometriosis affects everyone differently. Pain is a common symptom. The severity of symptoms is often related to the location of endometriosis, rather than the extent of the disease. Symptoms may include:

• painful periods
• painful sex
• abdominal, lower back and pelvic pain
• pain during ovulation.

You may also experience:

• bladder and bowel problems
• bloating
• tiredness
• anxiety and depression.

Causes

The exact cause of endometriosis is unknown. Some factors may increase the likelihood of developing the condition. For example, people who have a close relative (e.g. mother or sister) with endometriosis are seven to 10 times more likely to develop the condition.

Diagnosis

It can take time to get a diagnosis of endometriosis. The average time to get a diagnosis is seven years. This is because people have different symptoms and symptoms can change over time. Also, period pain is often accepted as ‘normal’.

A thorough review of your symptoms, medical history and test results will improve your chances of an early diagnosis.

Endometriosis can be diagnosed in different ways:

• Laparoscopy – Keyhole surgery (via the abdomen) performed under general anaesthetic. A laparoscopy is the only way to confirm that endometrial tissue is present.
• Ultrasound – Doctors with expert training can use ultrasound to make a ‘working diagnosis’ of endometriosis. Depending on the findings, you may or may not require surgery.
• Magnetic resonance imaging (MRI) – In the future, MRI might be used to help diagnose endometriosis. This may be a good option for people who can’t access specialist ultrasound scans or who want to avoid surgery.

Stages of endometriosis

Endometriosis can be classified as stage one (minimal), stage two (mild), stage three (moderate) or stage four (severe). The stages are based on the location, extent and depth of endometrial tissue seen during surgery.

Treatment and management

Most women have good long-term outcomes when they have an early referral to a women's health clinic and receive care from a medical team with specialist training in endometriosis. For example, doctors, gynaecologists, surgeons with advanced laparoscopy skills and pelvic floor physiotherapists.

Treatment may include pain-relief medicines, hormone therapy, non-hormone treatments, non-drug treatments, surgery and combined treatments.

Ask your doctor or specialists about the best treatments for you.

Fertility and pregnancy

Endometriosis may affect your fertility, although many women will become pregnant without medical help. Talk to your doctor about pregnancy planning.

Living with endometriosis

Endometriosis can affect your physical health and emotional wellbeing. It may also impact your relationships and sexual desire. It’s important to remember you’re not alone. It can be hard to talk about endometriosis and how it affects you. But when people in your life understand the condition, they are better able to support you through your ups and downs.

When to see your doctor

It’s not OK or normal to have severe period pain that affects your daily life. If you think you have endometriosis, see your doctor as soon as possible, as early diagnosis and treatment can reduce the severity of the condition.

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