Endometriosis affects 1 in 7 women. So why isn’t it named in the Census?
Endometriosis affects 1 in 7 women. So why isn’t it named in the Census?
In the past week, millions of Australians completed the 2026 Census, one of the country’s biggest opportunities to understand who we are, how we live and the health conditions affecting our communities.
Australians were asked whether they had been diagnosed with long-term health conditions including arthritis, asthma, cancer, diabetes, heart disease, kidney disease and mental health conditions.
In 2026, liver disease was added to the list for the first time.
But endometriosis isn't specifically named. Neither is polycystic ovary syndrome (PCOS).
Considering endometriosis affects at least 1 in 7 women and girls in Australia, it raises an important question: does it matter which conditions we specifically count?
The Census can't count everything
The Census isn't designed to be a comprehensive health survey, and the Australian Bureau of Statistics (ABS) received more requests for additional long-term health conditions than it could accommodate.
Australians whose condition isn't specifically listed can still select “any other long-term health condition”, so it wouldn't be accurate to say endometriosis isn't counted at all.
The more interesting question is: what do we lose when a condition isn't specifically identified?
What we count shapes what we can see
The Census provides a detailed picture of health across Australian communities, locations and population groups.
When a condition has its own category, we can identify and analyse it within that data. When conditions like endometriosis and PCOS sit within “any other long-term health condition”, we can't identify how many people selected that response because of those conditions specifically.
And that's significant when we consider the bigger picture.
Australia's National Health and Medical Research Council (NHMRC) acknowledges historical gaps in how sex and gender have been considered in health and medical research, contributing to gaps in the evidence used to inform healthcare.
In 2026, it also launched a dedicated Reframing Women's Health research initiative aimed at addressing critical gaps in women's health evidence.
So, is this an inequality issue?
The absence of endometriosis from the Census isn't, on its own, evidence that the Census discriminates against women. Many important health conditions aren't specifically named.
But within the context of an already recognised women's health data gap, it raises an important question about data equity.
If we know there are significant gaps in our understanding of women's health, are the datasets we rely on doing enough to help close them?
Because health data isn't just numbers. It informs research, policy, services and ultimately the healthcare people receive.
Closing the gender health gap will require much more than adding endometriosis to the Census. But making women's health more visible in the data that shapes our healthcare system is an important place to start.
Because if we want to close the gender health gap, we need the data to see it.
Sources
Australian Bureau of Statistics (ABS): 2026 Census topics and data release plan
Australian Institute of Health and Welfare (AIHW): Endometriosis in Australia – How common is endometriosis?
Herald Sun: Missing the mark: Census 2026 ‘fails to ask’ Australia’s big questions
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Endometriosis affects 1 in 7 women. So why isn’t it named in the Census?
In the past week, millions of Australians completed the 2026 Census, one of the country’s biggest opportunities to understand who we are, how we live and the health conditions affecting our communities.
Australians were asked whether they had been diagnosed with long-term health conditions including arthritis, asthma, cancer, diabetes, heart disease, kidney disease and mental health conditions.
In 2026, liver disease was added to the list for the first time.
But endometriosis isn't specifically named. Neither is polycystic ovary syndrome (PCOS).
Considering endometriosis affects at least 1 in 7 women and girls in Australia, it raises an important question: does it matter which conditions we specifically count?
The Census can't count everything
The Census isn't designed to be a comprehensive health survey, and the Australian Bureau of Statistics (ABS) received more requests for additional long-term health conditions than it could accommodate.
Australians whose condition isn't specifically listed can still select “any other long-term health condition”, so it wouldn't be accurate to say endometriosis isn't counted at all.
The more interesting question is: what do we lose when a condition isn't specifically identified?
What we count shapes what we can see
The Census provides a detailed picture of health across Australian communities, locations and population groups.
When a condition has its own category, we can identify and analyse it within that data. When conditions like endometriosis and PCOS sit within “any other long-term health condition”, we can't identify how many people selected that response because of those conditions specifically.
And that's significant when we consider the bigger picture.
Australia's National Health and Medical Research Council (NHMRC) acknowledges historical gaps in how sex and gender have been considered in health and medical research, contributing to gaps in the evidence used to inform healthcare.
In 2026, it also launched a dedicated Reframing Women's Health research initiative aimed at addressing critical gaps in women's health evidence.
So, is this an inequality issue?
The absence of endometriosis from the Census isn't, on its own, evidence that the Census discriminates against women. Many important health conditions aren't specifically named.
But within the context of an already recognised women's health data gap, it raises an important question about data equity.
If we know there are significant gaps in our understanding of women's health, are the datasets we rely on doing enough to help close them?
Because health data isn't just numbers. It informs research, policy, services and ultimately the healthcare people receive.
Closing the gender health gap will require much more than adding endometriosis to the Census. But making women's health more visible in the data that shapes our healthcare system is an important place to start.
Because if we want to close the gender health gap, we need the data to see it.
Sources
Australian Bureau of Statistics (ABS): 2026 Census topics and data release plan
Australian Institute of Health and Welfare (AIHW): Endometriosis in Australia – How common is endometriosis?
Herald Sun: Missing the mark: Census 2026 ‘fails to ask’ Australia’s big questions
Endometriosis affects 1 in 7 women. So why isn’t it named in the Census?
In the past week, millions of Australians completed the 2026 Census, one of the country’s biggest opportunities to understand who we are, how we live and the health conditions affecting our communities.
Australians were asked whether they had been diagnosed with long-term health conditions including arthritis, asthma, cancer, diabetes, heart disease, kidney disease and mental health conditions.
In 2026, liver disease was added to the list for the first time.
But endometriosis isn't specifically named. Neither is polycystic ovary syndrome (PCOS).
Considering endometriosis affects at least 1 in 7 women and girls in Australia, it raises an important question: does it matter which conditions we specifically count?
The Census can't count everything
The Census isn't designed to be a comprehensive health survey, and the Australian Bureau of Statistics (ABS) received more requests for additional long-term health conditions than it could accommodate.
Australians whose condition isn't specifically listed can still select “any other long-term health condition”, so it wouldn't be accurate to say endometriosis isn't counted at all.
The more interesting question is: what do we lose when a condition isn't specifically identified?
What we count shapes what we can see
The Census provides a detailed picture of health across Australian communities, locations and population groups.
When a condition has its own category, we can identify and analyse it within that data. When conditions like endometriosis and PCOS sit within “any other long-term health condition”, we can't identify how many people selected that response because of those conditions specifically.
And that's significant when we consider the bigger picture.
Australia's National Health and Medical Research Council (NHMRC) acknowledges historical gaps in how sex and gender have been considered in health and medical research, contributing to gaps in the evidence used to inform healthcare.
In 2026, it also launched a dedicated Reframing Women's Health research initiative aimed at addressing critical gaps in women's health evidence.
So, is this an inequality issue?
The absence of endometriosis from the Census isn't, on its own, evidence that the Census discriminates against women. Many important health conditions aren't specifically named.
But within the context of an already recognised women's health data gap, it raises an important question about data equity.
If we know there are significant gaps in our understanding of women's health, are the datasets we rely on doing enough to help close them?
Because health data isn't just numbers. It informs research, policy, services and ultimately the healthcare people receive.
Closing the gender health gap will require much more than adding endometriosis to the Census. But making women's health more visible in the data that shapes our healthcare system is an important place to start.
Because if we want to close the gender health gap, we need the data to see it.
Sources
Australian Bureau of Statistics (ABS): 2026 Census topics and data release plan
Australian Institute of Health and Welfare (AIHW): Endometriosis in Australia – How common is endometriosis?
Herald Sun: Missing the mark: Census 2026 ‘fails to ask’ Australia’s big questions
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