Poor access to healthcare and gaps in medical knowledge mean that endometriosis can take years, or even decades, to be diagnosed.
The condition occurs when tissue similar to the lining of the uterus grows in other places, such as the ovaries and fallopian tubes, which can lead to pain and difficulty conceiving. The cause of endometriosis is unknown, but it has been linked to genetics and problems with the immune system.
Researchers have previously reported how , but less was known about how widespread such delays are and why they occur. To learn more, at North Yorkshire County Council in the UK and her colleagues at the University of York and York St John University looked at 22 studies from 18 countries.
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They found that people with endometriosis wait an average of 6.6 years to be diagnosed, with much variation between countries. For instance, one study found cases where the diagnostic delay in Brazil was as low as six months, and there was one case of someone waiting 27 years in the UK. In the US, the average delay is 11 years, compared with 1.5 years in Australia, where the federal government in 2018.
When investigating why these delays occur, the researchers found that poor access to private healthcare is an issue in some countries for people with limited incomes. Some are also unable to physically access healthcare. The team also found that there is a general lack of endometriosis knowledge among both medical professionals and people with the condition鈥檚 symptoms.
Many people with endometriosis say they feel unheard or like their symptoms are dismissed. Five of the studies reported how people see an average of four doctors before they are diagnosed.
鈥淕etting a diagnosis gives you the language to explain your experience and provides the gateway to access support and treatment,鈥� says at De Montfort University in Leicester, UK. Seeking a diagnosis on top of experiencing endometriosis symptoms can be 鈥渞eally mentally gruelling鈥�, she says.
at the Massachusetts Institute of Technology, who was diagnosed with endometriosis 14 years after the onset of her symptoms, cites how , as it was believed to affect those who delayed pregnancy to progress at work, despite endometriosis sometimes arising in teenagers. It was often also , she says.
In general, women鈥檚 healthcare has been shrouded in taboos, leaving people with such conditions feeling marginalised, says Griffith. 鈥淧eople are just pat on the head and told they鈥檙e making it up. Part of the problem is just there鈥檚 a basic lack of knowledge.鈥�
In 2022, , despite the condition affecting at least 11 per cent of US women. In comparison, 12 per cent of US women have diabetes, which received 1500 per cent more funding.
The lack of funding results in a lack of research, which then affects awareness and medical practice, says , an endometriosis researcher at the Jackson Laboratory in Connecticut.
鈥淚t is extremely common and yet we don鈥檛 know the most basic reason why endometriosis arises, how it spreads and how it evolves,鈥� she says.
medRxiv
