Endometriosis

What is endometriosis?

Endometriosis is a common chronic health condition, which is often under-recognised as it can be challenging to diagnose. It occurs when the cells and tissue similar to the lining of the uterus (womb) grow outside of the uterus, which can be painful. Endometriosis can be found on the lining of the uterus, the fallopian tubes, the ovaries, bowel, bladder and other less common locations. There is currently no cure, and the cause is not clear. Endometriosis affects at least 1 in 9 Australians with a uterus (that is over 700,000 people). That means that most people will know at least one person affected by endometriosis. It can affect all people with a uterus, regardless of their background, age or lifestyle. The symptoms can also vary significantly from person to person, and some people will have no symptoms at all.

What are possible symptoms of endometriosis?

• Painful periods that impact on quality of life
• Tummy, back, leg and/or pelvic pain
• Heavy or irregular menstrual bleeding (periods)
• Bowel or bladder pain and irritation, which may be around the time of a period
• Infertility or difficulty becoming pregnant
• Pain during or after sex
• Anxiety or depression related to pain
• Premenstrual symptoms
• Tiredness and fatigue
• Feeling faint or fainting during your period
• Nausea
• Mood changes

What tests can help diagnose endometriosis?

• Ultrasound is the first-line investigation (abdominal or transvaginal ultrasound). However, an ultrasound alone can never completely rule out endometriosis.
• Laparoscopy (key-hole surgery) under general anaesthetic can be used for both diagnosis and treatment of endometriosis.

What are treatment options for endometriosis?

• Pain management medications (non-steroidal anti-inflammatories)
• Self-care (heat, exercise and pacing or adjusting activities)
• Hormonal contraception such as the combined contraceptive pill (which is often recommended to be taken with a hormone pill every day), the vaginal ring or a hormonal IUD.
• Physical activity
• Physiotherapy
• Referral to a pain clinic or pain specialist
• Complementary therapies (however there is no direct evidence that complementary therapies such as acupuncture can improve endometriosis)
• Gonadotrophin-releasing hormone analogues (typically used for moderate to severe symptoms of endometriosis)
• Key-hole surgery (laparoscopy).

Endometriosis myths & facts:

Myth: everyone with endometriosis experiences pain.
Fact: some people have asymptomatic endometriosis, which means they don’t experience pelvic pain or other common symptoms.

Myth: period pain is normal and doesn’t need treatment.
Fact: severe pain or symptoms that interfere with life should not be accepted as normal and should be acknowledged and treated.

Myth: you cannot become pregnant if you have endometriosis.
Fact: most people with endometriosis are still able to become pregnant, although some people may find it more difficult to become pregnant and may benefit from fertility advice and treatment.

Myth: pregnancy will cure endometriosis.
Fact: endometriosis symptoms can appear to improve during pregnancy, but these effects may only be temporary, and symptoms can return.

Where can I get more information?

• EndoZone: Funded by the Australian Government Department of Health and Jean Hailes, this evidence-based website was co-created by people affected by endometriosis and includes self-management techniques.
• QENDO: an organisation for those affected by endometriosis which provides support, education, awareness and offers face to face support groups.
• Jean Hailes: a national not-for-profit organisation with resources including fact sheets, podcasts, translated videos and checklists.
• Living with Endo Podcast: Listen to interviews with medical professionals, providing you with education about endometriosis
• Pelvic Pain Foundation: a not-for-profit organisation which provides information for those affected by pelvic pain, their families, and their health care providers. The Pelvic Pain Foundation provides a free education program for year 10 students in all states to increase education and awareness of pelvic pain.
• Sexual Health Victoria ‘Doing it’ podcast episode 41: ‘How to endo’ with Bridget Hustwaite
• Endometriosis Australia: a nationally accredited charity that raises awareness, educates and funds research for endometriosis.
• Endometriosis in the workplace poster
• Endometriosis Australia Workplace Accreditation Program: enables organisations to sustainably and strategically take meaningful action to support their employees with endometriosis.
• ‘My Endo Report’: a downloadable report that you can take with you to your health appointments to help you to advocate for your own health
• Australian Coalition for Endometriosis: The peak body representing endometriosis and pelvic pain in Australia.
• EndoActive: an independent, Not for Profit Health Promotion Charity which aims to promote early intervention and more informed treatment of endometriosis.

Symptom Self-Assessment Tools

• Raising Awareness Tool for Endometriosis (RATE): a quick-to-use electronic resource for health professionals and their patients to help identify and assess endometriosis – and associated symptoms – to reach a faster diagnosis and achieve more effective management of symptoms.
• Period ImPact and Pain Assessment (PIPPA) Online Screening Tool: a tool designed to help you identify how much of an impact your period is having on your life.
• Jean Hailes symptom diary: Fill out this diary to keep a record of your periods, especially to track pain and/or heavy bleeding.

Where to get help:

• Endometriosis and pelvic pain clinics
• Your doctor
• Sexual Health Victoria
• Endometriosis Australia support groups
• Gynaecologist