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Know the signs and symptoms of endometriosis

A woman lies in bed, holding a pillow in pain
One in nine Australian women have endometriosis, a debilitating disease that affects the reproductive system.

It’s the crippling condition that affects at least one in nine women in Australia, impacting their relationships, capacity to work and study, physical health, and mental wellbeing. Endometriosis is progressive and debilitating disease of the female reproductive system. It is often accompanied by chronic pain and can contribute to infertility, but early detection and treatment can help manage the condition.

What is endometriosis?

Endometriosis is a condition when cells similar to those that line the uterus (womb), called the endometrium, grow in other parts of the body, causing pain and possibly infertility. Stray endometrial tissue is known as endometrial implants or lesions.

Endometriosis can affect the ovaries, fallopian tubes, bowel, and lining of the pelvis. Other common sites include the cervix, vagina, vulva, ureters (the tubes that connect the kidneys to the bladder) and bladder.

Stray endometrial tissue continues to act as it usually would inside the uterus. It thickens, breaks down, and bleeds with each menstrual cycle. Because the stray tissue can’t leave the body like normal menstrual blood does, it stays inside the pelvis where it can cause inflammation in the surrounding organs.

The presence of stray tissue can be a constant source of irritation and inflammation to the pelvic area. This can lead to the formation of scar tissue and adhesions, which are abnormal bands of tissue that bind the pelvic organs together. Normally our organs move a little as part of normal body functions like ovulating, having sex, and going to the toilet. Adhesions and scar tissue can make these functions very painful, which impacts quality of life.

Abnormal bleeding, inflammation, scar tissue, and adhesions can cause severe pain, especially during menstruation. It can also lead to fertility issues.

Causes of endometriosis

The exact causes of endometriosis aren’t known, but there are several factors that may increase the risk of developing the condition. If your mother or sister has endometriosis, you’re at higher risk of developing it yourself.

Other potential risk factors for endometriosis include:

  • Starting your menstrual period at an early age (before age 11)
  • Going through menopause at an older age
  • Frequent periods or short cycles (less than 27 days)
  • Long and heavy menstrual periods (more than seven days)
  • Never giving birth
  • Low body weight
  • Higher than normal levels of oestrogen
  • Reproductive tract abnormalities, or any condition that prevents the normal passage of menstrual blood flow out of the body.

Endometriosis can begin in adolescence and may continue after menopause.

Symptoms of endometriosis

Symptoms of endometriosis can include:

  • Painful periods
  • Pain during or around ovulation
  • Pain during or after sex
  • Heavy bleeding or irregular bleeding
  • Pain with bowel movements or urination
  • Pain in the pelvic area, lower back, or legs
  • Nausea
  • Fatigue
  • Diarrhoea and constipation
  • Difficulty falling pregnant (infertility)

Symptoms can vary widely, depending on where the stray endometrial tissue is located. Some women experience severe symptoms, while others may not have any symptoms at all. The condition is progressive, which means symptoms can become worse with time.

Although pain is one of the most common symptoms of endometriosis, it’s not a good indicator of the extent of the condition. You could have mild endometriosis and severe pain, or extensive endometriosis and little or no pain. Some women only discover they have endometriosis when they start trying to fall pregnant.

A teenage girl holds a pillow and looks unwell

Think you might have endometriosis?

Many women think that painful periods are normal and don’t seek help. It’s important to speak with your health care provider if you’re experiencing painful periods or other symptoms, so potential issues can be addressed as early as possible.

Seek medical help if your period pain is getting in the way of your daily activities. This might include:

  • Missing work, school, or other activities
  • Regular pain medications aren’t helping
  • Symptoms are getting worse
  • You feel you aren’t coping mentally

A range of treatments are available depending on the severity of the endometriosis, and treatments are targeted to each individual case. If you have symptoms or concerns, speak with your doctor or gynaecologist.

Thank you to Dr Akram Khalil from Metro North Hospital and Health Service for reviewing this content. Dr Khalil is a Senior Gynaecology Consultant at the Royal Brisbane and Women’s Hospital.

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Last updated: 1 September 2022