What is endometriosis?

Endometriosis is a chronic (long-term) condition. If you have endometriosis, tissue like the lining of your uterus, called the endometrium, grows outside your uterus in other parts of your body.

This tissue can grow around your:

• ovaries
• fallopian tubes (the tubes that allow eggs to travel from the ovaries to the uterus)
• lining of your pelvis
• your pelvic organs

This can cause scarring and inflammation around these areas and other parts of your body.

Endometriosis is a highly individualised condition. The symptoms and impact of the disease range significantly from person to person.

Endometriosis is a condition that affects about 1 in 9 females before the age of 44 years. Some people can have endometriosis and not know it, but for others it can cause severe symptoms.

What are the symptoms of endometriosis?

Some of the symptoms of endometriosis are:

• abdomen (tummy) or pelvic pain
• painful, heavy, or irregular periods
• pain with passing wind, urine (wee) or stools (poo)
• pain during sex
• constipation
• diarrhoea
• bloating
• urinating more often
• tiredness
• pain in your thigh or leg, which may get worse over time
• infertility
• anxiety or depression related to pain

What causes endometriosis?

The cause of endometriosis is not fully understood.

You may have a higher likelihood of having endometriosis if a close relative also has it.

When should I see my doctor?

Visit your doctor if you:

• think you have endometriosis
• have period pain, or pelvic pain that affects your usual activities
• have other symptoms that worry you

The Raising Awareness Tool for Endometriosis (RATE) is an online tool that can help you and your doctors recognise endometriosis and its related symptoms. This may help you get diagnosed faster and treated more effectively.

FIND A HEALTH SERVICE — The Service Finder can help you find doctors, pharmacies, hospitals and other health services.

How is endometriosis diagnosed?

To diagnose endometriosis, your doctor will ask you about your symptoms. They may also do a physical examination and arrange for an ultrasound.

Your doctor can also refer you for treatment from a:

• gynaecologist
• surgeon
• women’s health physiotherapist

You may also need to have a laparoscopy.

A laparoscopy is keyhole surgery that lets a doctor look inside your abdomen. Your doctor will look for endometriosis and take a biopsy (sample) to confirm your diagnosis.

There are 4 stages of endometriosis: minimal, mild, moderate and severe. The stage depends on the location and amount of endometriosis you have. A higher stage doesn't always mean you will have more pain.

How is endometriosis treated?

While there is no cure for endometriosis and it can continue until menopause or beyond, there are effective treatments that may relieve symptoms.

If you have endometriosis, you will probably be cared for by a variety of health professionals (multidisciplinary team). The Australian Government is introducing endometriosis and pelvic pain clinics around Australia to improve access to treatment options and services.

Endometriosis can usually be managed with medicines, surgery and complementary treatments like physiotherapy and psychology.

Endometriosis is usually treated with hormone-based medicines. This helps to regulate oestrogen to:

• slow the growth of endometrial tissue
• prevent bleeding

These therapies are usually contraceptive, like the oral contraceptive pill ('the pill') or a contraceptive implant or an intrauterine device (IUD) and prevent pregnancy.

If you have endometriosis, you can also have surgery to remove the tissue.

Endometriosis symptoms may be eased by using pain relief. If your pain is not improved with over-the-counter pain relief medication – speak to your doctor.

Always check with your doctor or pharmacist before you use complementary treatments, as they may interfere with prescribed medicines.

If your endometriosis does not cause you symptoms, you may not need treatment.

Can endometriosis be prevented?

Endometriosis can't be prevented but staying healthy might help with your symptoms. Things that can help you manage pain include:

• exercising
• letting yourself relax
• making sure you get enough sleep

Complications of endometriosis

Endometriosis may affect your ability to get pregnant.

How can endometriosis affect my fertility?

Many women with endometriosis fall pregnant naturally. But about one in three women with endometriosis have trouble getting pregnant.

To get pregnant, an egg needs to be released from one of your ovaries. The egg then needs to travel through the fallopian tube. Most eggs are fertilised by sperm in one of the fallopian tubes. The fertilised egg then needs to attach to the lining of the uterus.

Endometriosis may prevent a pregnancy because the extra tissue may:

• stop your ovary from releasing eggs
• block your fallopian tubes
• prevent the egg from implanting in your uterus

Endometriosis might also produce chemicals that interfere with the hormones that are needed to become pregnant.

Although it can be harder to get pregnant, most people with endometriosis are still able to have children.

How can endometriosis affect pregnancy?

Research looking at the effect of endometriosis on pregnancy hasn’t clearly shown any complications or risks during pregnancy.

Some studies say that endometriosis does not have a big effect on pregnancy. Other studies say that endometriosis might increase the risk of complications such as a miscarriage.

The hormones produced by endometriosis may also impact the hormones needed for the embryo to develop.

Most people with endometriosis will have a normal pregnancy. Extra monitoring is usually not recommended, but this is something to discuss with your doctor.

Read more about staying healthy while you are pregnant.

During pregnancy, endometriosis can improve but it often comes back later and may cause problems becoming pregnant again.

Resources and support

In Australia, endometriosis and pelvic pain clinics are now being established and funded by the Department of Health, Disability and Ageing. You can visit their website to find a clinic near you.

You can also visit the Endometriosis Australia website to:

• find resources about endometriosis
• keep up to date on endometriosis research
• find support groups and learn about clinics near you

For further information about endometriosis, you can visit:

• healthdirect’s Endometriosis page
• the Jean Hailes website
• the Royal Women’s Hospital website
• Do you prefer to read languages other than English? Factsheets are available in a variety of languages.