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Endometriosis - fact sheet

The signs, symptoms and causes of 'endo', as well as what you can do, including management and treatment.

Download the fact sheet

What is endometriosis?

Endometriosis is a progressive, chronic condition in which cells similar to those that line the uterus grow in other parts of the body. Studies suggest that endometriosis affects 1 in 10 women of reproductive age, with an estimated 176 million women worldwide having the condition.

What happens?

The endometrial tissue cells may:

  • stick to organs in the pelvis
  • start to grow and form plaques or patches on the outside of pelvic tissues, particularly the peritoneum (inside of the abdomen and pelvis) and nodules that invade organs such as ovaries and ligaments
  • have the same cyclical/menstrual changes inside and outside the uterus
  • bleed at the same time as your menstrual period.

What causes endometriosis?

We don’t really know what causes endometriosis, and possible causes can vary, but may include:

  • a family history of endometriosis, ie a close relative with the condition
  • retrograde (backwards) menstruation; during a period, menstrual blood flows out of the vagina, but also backwards along the fallopian tubes
  • the growth of endometrial tissue. In most women, the blood containing this tissue gets absorbed or broken down and causes no symptoms. In women with endometriosis, this tissue starts to grow
  • type of period: heavy bleeding, lasting longer than five days; first period before 11 years of age; regularly less than 27 days between periods
  • low body weight.

What are the signs and symptoms?

The symptoms vary from woman to woman. Some have many symptoms where severe pain occurs, others have no symptoms.

Pain

Pain is one of the biggest symptoms. This can be pain immediately before and during your period and/or during or after sex. Pain can be felt in the tummy, back, pelvis, with a bowel movement, passing wind or urine, or when you ovulate.

Heavy bleeding

Heavy bleeding can occur with or without clots. Bleeding may be irregular, continue for a long time or you may have spotting before your menstrual period.

Bladder and bowel problems

Bladder and bowel problems may occur, eg, constipation or diarrhoea, feeling the need to urinate more frequently at different times in your menstrual period, and bloating.

What can you do?

If you think you have endometriosis, see your doctor who can refer you to a gynaecologist. Don’t delay, as early diagnosis and treatment may reduce the severity of the disease. Many women do not get a correct diagnosis for up to 7-10 years, often because the symptoms can be different between women and can change over time.

A laparoscopy is the only way to diagnose endometriosis. A thin tube (telescope) with a light (laparoscope) is inserted into the abdomen through a small cut in the belly button to allow the gynaecologist to see if there is any endometrial tissue within the pelvis. Some of the tissue is removed and examined to confirm a diagnosis of endometriosis.

The right treatment will depend on your symptoms, the severity of the condition and whether you are trying to become pregnant or maintain your ability to have children.

Managing and treating endometriosis

  • There is no direct evidence that lifestyle affects endometriosis; however, it is important to remain as healthy as possible
  • Gentle activity can help to ease pain; aim for 30 minutes of physical activity on most days of the week
  • Having enough quality sleep every night will help your immune system function at its best
  • Find ways to manage stress; try gentle yoga techniques, relaxation exercises or mindfulness
  • Managing the pain may involve medication such as anti-inflammatory drugs or pain medication
  • Hormone therapy such as the contraceptive pill or progestins may help to reduce pain and the severity of endometriosis by suppressing the growth of endometrial cells and stopping any bleeding, including your period
  • Surgery aims to diagnose and remove as many patches of endometriosis, cysts, nodules, endometriomas (chocolate cysts) and adhesions as possible, to repair any damage caused and improve fertility
  • When recurrent endometriosis is at its worst, it may lead to chronic pelvic pain, impairing the quality of life. Removal of the uterus, both ovaries and tubes (hysterectomy and bilateral salpingooophrectomy) is performed. If there is endometriosis in the bladder or bowel, the areas of endometriosis will be removed.

Severe period pain is not normal. If the pain is so severe that you are missing school, work and other activities, please get help.

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

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