Endometriosis

What is endometriosis?

Endometriosis is a condition where tissue similar to the lining of the uterus grows outside the uterus. It can cause severe pain in the pelvis and other parts of your body and can make it harder to get pregnant.

Endometriosis is a progressive and chronic condition, meaning it gets worse over time when not treated. Having endometriosis can affect how you take part in education, work, sporting or basic everyday activities. 

In Australia, about 1 in 9 women, girls and people assigned female at birth develop endometriosis and it can lead to thousands of hospitalisations every year.

What are the symptoms of endometriosis?

People with endometriosis will experience different symptoms. Depending on where the endometriosis is, the severity of the symptoms will change.

Symptoms include:

• abdominal (tummy) or pelvic pain before and during your period, during or after sex or when going to the toilet
• pain in your thigh or leg, which may get worse over time
• heavy periods or irregular bleeding, sometimes with clots, or bleeding for longer than normal or before your period is due
• bleeding from the bladder or bowel, or changes in urination or bowel movements, such as needing to urinate more often
• feeling bloated, with or without pain
• being tired, especially around the time of your period
• not being able to get pregnant (infertility)   

What causes endometriosis?

Doctors don't know what causes endometriosis, but there are some things that put you at greater risk:

• Retrograde menstruation. This is when, instead of menstrual (period) blood flowing out of the vagina, some travels backwards along the fallopian tubes and into the pelvis. This blood can contain cells from the endometrium. In some people, these endometrial cells stick onto the surfaces of pelvic organs and start growing.
• Your immune system. If your immune system doesn't stop the growth of uterine lining-like tissue outside of your uterus, you may develop endometriosis.
• Family history. People who have a close relative with endometriosis are up to 7 to 10 times more likely to develop it.

Other possible contributing factors for endometriosis include:

• long and heavy periods 
• frequent periods or short cycles
• starting your period before 11 years of age
• having your first pregnancy when you are older
• low body weight
• alcohol use

How is endometriosis diagnosed?

Many people find out they have endometriosis when they see a doctor for fertility problems. Some people learn they have endometriosis when they have surgery for something unrelated. Endometriosis can be hard to diagnose because symptoms are similar to other conditions. On average it takes around 5 to 6.5 years between first having symptoms and getting a diagnosis.

To diagnose endometriosis, your GP will ask about your symptoms and examine you. If they think endometriosis may be the cause, you will be referred to specialist women’s health services for investigations such as an ultrasound, MRI or laparoscopy. 

A laparoscopy is a type of surgery in which small incisions are made in your abdominal wall and a small scope (camera) is used to look inside. Laparoscopy let's your doctor see inside your pelvis and collect a small sample of tissue, which can be tested to check for endometriosis.

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.

When should I see my doctor?

If you think you have endometriosis, talk to a doctor about your symptoms. Start with your GP or a women’s health service like Family Planning.

Be clear about your symptoms. The Raising Awareness Tool for Endometriosis (RATE) is an online tool that can help you describe your symptoms to your doctor. This might lead to a faster diagnosis and better treatment. 

Even when endometriosis is treated, pain may not go away completely, and it might come back. Talk to your doctor about all the options for treating your endometriosis and what might work best for you. 

You can visit the HealthDirect website for more information. You can also use the Symptom Checker and Question Builder to prepare for your doctor’s appointment.

Getting a diagnosis and finding the right treatment can take time so you may need to be persistent or seek a second opinion. It’s important to get the help you need. 

How is endometriosis treated?

If you have endometriosis, you will probably be cared for by a team of several different healthcare professionals. 

Endometriosis can usually be treated with medicines, surgery and/or complementary treatments like physiotherapy and psychology. 

Treatment will depend on:

• your symptoms
• the severity of your endometriosis
• whether you want to become pregnant

Medicines for endometriosis include hormone-based treatments such as:

• oral contraceptive pill ('the pill')
• contraceptive implant
• intrauterine device (IUD)
• Gonadotrphin-releasing hormone analogues (GnRHa)

Hormone treatments can reduce pain and the growth of endometrial cells. Because they only work as long as you use them, the endometriosis may come back if treatment stops.

Hormone therapy is not suitable for women who want to get pregnant. Tell your doctor if you are planning a pregnancy before starting treatment.

Your doctor may also recommend that you take pain-relief medicines.

Surgical treatment aims to remove as much of the endometriosis as possible. There are several options, including laparoscopic surgery. This involves having a small cut in the abdomen to allow doctors to remove the endometrial tissue. Surgery may also be combined with medicines to increase the benefits and help keep your symptoms controlled. 

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

If you are living with endometriosis, make sure you get plenty of sleep, exercise regularly and reduce stress as much as possible.

What are the complications of endometriosis?

Endometriosis can cause bladder and bowel problems. Specially designed exercises can help improve the function and strength of the pelvic floor muscles, which can help ease symptoms of endometriosis. This can also help with the chronic pain of endometriosis.

Ask your GP to refer you for pelvic floor physiotherapy, or to a psychologist or pain clinic to help you to find the right strategies to manage chronic pain.

Around 1 in 3 women with endometriosis have trouble with fertility. Fertility treatment such as in vitro fertilisation (IVF) can help. Ask your doctor for a referral if you have endometriosis and are having trouble becoming pregnant.

More information and resources

For more information about endometriosis visit the following: 

• Endometriosis | healthdirect
• Family Planning Tasmania
• Jean Hailes for Women's Health website 
• Endometriosis Australia 
• Endozone 
• Australian Institute of Health and Welfare

Other languages

Do you prefer to read languages other than English? Jean Hailes for Women's Health has factsheets available in a variety of languages.