Endometriosis

Endometriosis can have a substantial impact on individuals. Symptoms can be debilitating and may affect quality of life, fertility, and lead to reduced participation in school, work and social activities.

Measures of impact covered in this section include burden of disease and health expenditure.

Burden of disease

Burden of disease measures the gap between the ideal of living to old age in good health, and the current situation where healthy life is shortened or lost by illness, injury, disability and death. It combines health loss from living with illness and injury (non-fatal burden, or years lived with disability, or YLD) and dying prematurely (fatal burden, or years of life lost, or YLL) to estimate total health loss (total burden, or disability-adjusted life years, or DALY). For endometriosis, there is no burden due to dying prematurely, so only non-fatal burden (YLD) is reported. One YLD is one year of 'healthy life' lost due to illness.

What is the burden of disease due to endometriosis?

The Australian Burden of Disease Study 2024 found that there were 8,356 YLD from endometriosis in Australia, a rate of 0.6 per 1,000 females (crude rate) (AIHW 2024a). The disease burden due to endometriosis:

• represents 0.5% of the non-fatal burden among females in Australia
• represents 13% of the non-fatal burden among females due to reproductive and maternal conditions, the third highest burden in this condition group
• is highest among females aged 30–34 with 1,688 YLD, equivalent to 1.7 YLD per 1,000 females (Figure 2)
• results in endometriosis being the 15th leading cause of non-fatal burden among females aged 30–34.

The age-standardised YLD rate for endometriosis has increased from 0.5 per 1,000 females in 2003 to 0.7 in 2024. This change may be driven by changes in disease prevalence, community awareness or diagnosis.

Health system expenditure

The AIHW Disease expenditure database showed that in 2022–23, an estimated $293 million was spent on endometriosis in the Australian health system (AIHW 2024b). This represents less than 1% of spending attributable to specific disease groups.

This expenditure consisted of:

• $255 million for hospitals (including public hospital admitted patient, outpatient and emergency department services and private hospital services)
• $25 million for referred medical services (including pathology, medical imaging and specialist services)
• $14 million for primary health care (including General Practitioner services and Pharmaceutical Benefits Scheme expenditure).

Around 84% of total expenditure on endometriosis was attributed to females of reproductive age (aged 15–44 years). Females aged 35–39 years had the highest expenditure amongst all age groups, accounting for around 20% of total endometriosis expenditure.

Over the period 2013–14 to 2022–23:

• total spending on endometriosis more than doubled from $142 million to $293 million in nominal terms (an increase of $152 million)
• after adjusting for the effects of inflation, real expenditure on endometriosis grew $118 million.

These estimates include payments from all sources of funds, such as the Australian and State and Territory Governments, Private Health Insurance, and out of pocket payments by patients, where spending can be attributed to the treatment of endometriosis. It is likely to underestimate spending where data are lacking on endometriosis-related services, such as primary care services and medicines.