Missing the signs of endometriosis - new guidance for clinicians

Some cases of endometriosis in Australia are taking up to eight years to diagnose, according to new research published in the British Medical Journal (BMJ).

Endometriosis is a progressive, chronic condition where tissue that lines the uterus (the endometrium) grows in other parts of the body. This most commonly occurs in the pelvis and can affect other parts of the body.

Professor Martha Hickey from the University of Melbourne Department of Obstetrics and Gynaecology and the Royal Women’s Hospital is one of the authors of a practice report titled ‘Endometriosis – easily missed’, which provides new guidance for clinicians to increase awareness of endometriosis and avoid the long diagnostic delays that many women experience.

The report reveals the average worldwide diagnostic delay has been reported as seven years from when symptoms start to definitive diagnosis, compared to eight years in both the UK and Australia. A 2021 population-based survey in Australia reported approximately 6.3 per cent of women aged 40-44 have clinically confirmed endometriosis.

Further analysis in the UK showed that one third of patients had consulted their GP six times or more before referral, with 39 per cent having two or more gynaecological referrals before receiving a definitive diagnosis with diagnostic delay even more common in adolescents.

The report offers new advice about specific questions to ask patients about their symptoms and how best to investigate these symptoms to confirm the diagnosis. However, the reports also recognises that the lack of a reliable non-invasive test for endometriosis, and some patient’s reluctance or difficulty in reporting symptoms may contribute to delays in diagnosis.

“I am encouraging clinicians to ask their patients about painful periods and pelvic pain. Sometimes, the age of the patient influences what questions are asked but these questions need to be asked no matter the age,” Professor Hickey said.

Professor Hickey also advises when clinicians should refer patients to specialised care.

The long-term consequences of endometriosis include impaired quality of life, anxiety, depression, and self-harm.

“We know that delays in diagnosis can cause considerable suffering, distress, economic hardship and reduced workforce participation. Despite increased public awareness and clinical education, early recognition of endometriosis remains uncommon, and we need to listen to patients who are experiencing symptoms,” Professor Hickey said.