AIHW report provides the most recent prevalence estimates on endometriosis

Around 14% of women aged 44–49 are estimated to have endometriosis, the latest release from the Australian Institute of Health and Welfare (AIHW) has revealed. 

Endometriosis in Australia also shows that the rate of hospitalizations for the condition has doubled among women aged 20–24 over the past decade.

The report includes the most recent prevalence estimates on the historically under-recognized condition which can affect fertility and lead to reduced participation in work, school and social activities. 

Endometriosis is a progressive chronic condition where tissue similar to the lining of the uterus grows in other parts of the body. Endometriosis causes inflammation and scarring, which can lead to painful adhesions joining together pelvic organs that are normally separate. Women may experience pain, heavy menstrual bleeding, bleeding between periods, abdominal bloating, fatigue, anxiety, depression and reduced fertility, among other symptoms.’

Katherine Faulks, AIHW Spokesperson

Researchers at the University of Queensland used data from the Australian Longitudinal Study on Women’s Health, along with health service data, to estimate the prevalence of endometriosis in 2 groups of women, those born between 1973 and 1978 and those born between 1989 and 1995. 

The estimates show that women are being diagnosed with endometriosis at earlier ages. 

By age 31, 9.2% of women born between 1989 and 1995 were diagnosed with endometriosis, compared with 6.9% of women born between 1973 and 1978 at the same age.

‘This increase may reflect increased awareness of endometriosis among the general public and health professionals, leading to increased diagnosis and/or reporting of diagnosis among women born more recently,’ Ms. Faulks said. 

Diagnosis and management of endometriosis is complex, with an average of between 6 and 8 years between the onset of symptoms and diagnosis.  

There were 40,500 endometriosis-related hospitalizations in 2021–22 and endometriosis was the 20^th most common reason for hospitalization among those aged 15–44. The rate of hospitalization increased by 24% in the last 10 years from 250 hospitalizations per 100,000 females in 2011–12 to 310 hospitalizations per 100,000 females. 

While hospitalizations in Australia are generally increasing over time, the growth of endometriosis-related hospitalizations was greater than that seen for all female hospitalizations between 2011–12 and 2021–22.

The greatest increase was seen among ages 20–24, with the rate doubling between 2011–12 and 2021–22 (from 330 to 660 hospitalizations per 100,000 females). Endometriosis was among the leading causes of hospital admissions in this age group.

Endometriosis-related hospitalizations were more likely to be partly or fully funded by private health insurance than all hospitalizations for females, and around twice as likely to be self-funded as all hospitalizations for females. 

The report also shows a lower rate of endometriosis-related hospitalizations among First Nations people and people living in lower socioeconomic areas and remote areas of Australia, but further work is needed to understand the impact of endometriosis on priority populations, particularly those who face barriers to accessing health care services.

Endometriosis can affect women and girls, transgender, non-binary, and gender-diverse people assigned female at birth. In this report, terminology used to refer to those experiencing endometriosis is based on that used in the underlying data collection.