Majority of women with endometriosis in Denmark never get a diagnosis- study

Fewer than two per cent of women of reproductive age in Denmark receive an endometriosis diagnosis, researchers from Aarhus University have found.

Endometriosis, a condition in which tissue similar to the lining of the uterus grows in other places of the body, affects roughly 10 per cent (190 million) of women and girls globally.

While the cause of the disease is unknown, symptoms can be treated with medicines or, in some cases, surgery.

As part of a major research project at Aarhus University, scientists examined ways to improve the diagnosis of endometriosis in Denmark to ensure timely treatment.

The team found that the vast majority of women with the disease never get a diagnosis, with the chances of being diagnosed and receiving treatment varying across the country.

Even though they noticed a large increase in the number of diagnoses of the disease – 46.8 per cent from 1990 to 2017 – the researchers revealed that fewer than two per cent of women of childbearing age were diagnosed.

“The results show that there was an increase in the frequency of diagnosed endometriosis in Denmark between 1990 and 2017,” explained Dorte Rytter, associate professor in epidemiology at Aarhus University.

“However, the study shows there are clear regional differences. This means that, in some areas of Denmark, many women may be suffering from the disease without a diagnosis and without the necessary treatment.

“Some of the differences could perhaps be explained by regional differences in the structure of the health services, while other differences may be because awareness of the symptoms among women and doctors differs depending on where you live in Denmark.”

The absence of an endometriosis diagnosis can have severe consequences, Rytter added, stressing that awareness remains crucial.

“Endometriosis is a highly under-diagnosed disease, and many women live with symptoms for many years before they get a diagnosis.

“The symptoms can be severely debilitating for some women, and may lead to severely reduced quality of life and work capacity.

“We hope that this study will help raise awareness about the symptoms of endometriosis and the importance of quicker and more equal diagnosis,” she continued.

“Our results are also important knowledge for politicians and decision-makers who can help to put right the regional inequalities in diagnosis.”