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Endometriosis - plain English fact sheet

This fact sheet in plain English covers what endometriosis is, the symptoms, causes and how to get help. This project was funded by the Victorian Government.

What is endometriosis?

Endometriosis – pronounced ‘end-o-me-treeoh-sis’ – means the tissue that normally lines the uterus (or womb) grows in other parts of the body. Women can have this condition for life and it can get worse over time. Studies suggest that endometriosis affects 1 in 10 women during the years they have their periods. About 176 millio women around the world have endometriosis.

What happens?

When you have endometriosis, this tissue can:

  • stick to organs in the pelvis
  • start to grow on the outside of pelvic tissues and into organs such as the ovaries
  • act the same way as it does in the uterus; for example, it bleeds at the same time as a period.

What causes endometriosis?

We do not know why endometriosis occurs and what causes it. Some issues are linked to endometriosis, such as:

  • retrograde menstruation, where a period flows back into the lower tummy or pelvis, along the fallopian tubes
  • family history of endometriosis
  • the growth of endometrial tissue inside the pelvis
  • periods that start at an early age
  • periods that are long, heavy, painful or more frequent
  • low body weight.

Symptoms of endometriosis

Symptoms can be different for everyone, but common symptoms include:

  • pain around your tummy, back or pelvis that might happen at different times; for example, when you have your period or when you have sex
  • bleeding that is heavy, long-lasting or irregular
  • bladder and bowel problems, such as constipation or diarrhoea, bloating, pain when going to the toilet and needing to wee more often.

What can you do?

If your pain is so bad that you are missing school, work and other activities, it is important to see your doctor straight away. The earlier you are diagnosed and treated for endometriosis, the better. Your endometriosis might not be as bad if it is found early.

Diagnosing endometriosis

There is no easy way to diagnose endometriosis because the condition can be mild to severe and women can have different symptoms. The only way to diagnose endometriosis is with a laparoscopy. This operation uses a thin telescope to see if endometrial tissue is in the pelvis.

Treating and managing endometriosis

Your treatment will depend on your symptoms and how they affect your daily life. You can manage your symptoms with:

  • an operation to remove endometriosis tissue, repair damage and improve your chances to have children
  • pain medication
  • hormone therapy, such as the contraceptive pill or progestins, to reduce pain and bleeding
  • an operation to remove part or all your affected organs if your pain is severe
  • gentle exercise – aim for 30 minutes of physical activity each day
  • quality sleep
  • relaxing activities like yoga to reduce stress

For more information go to jeanhailes.org.au/health-a-z/endometriosis