The disease is characterized by severe pain during menstruation and intercourse, as well as problems conceiving.

Endometriosis affects up to one in ten women of childbearing age, and costs society a fortune in sick days and treatment. Just as it is only 1.6 percent of women who get the correct diagnosis, research from Aarhus University shows.

The disease involves tissue of the same type as mucous membranes in the uterus, which can also sit outside the uterus around the abdomen in women and trigger heavy bleeding and very severe pain.

The vast majority of women with the disease never get a diagnosis, or they only get it after many years.

25-year medical history

47-year-old Linda Tosti from Hjortshøj near Aarhus in Denmark has not had any operations related to endometriosis since she had men as a teenager.

– Even as a teenager I was in so much pain that, despite how embarrassing it was, I went to the GP and had an abdominal examination. He dismissed it as completely normal, she says.

As an 18-year-old, Tosti had such severe pain that she went to the doctor to find out how old you had to be to have the uterus removed. It was the start of a 25-year medical history with a complete medical search and treatments while she was still working.

– For many years, the Games did not take it seriously at all. The message was that it hurts to be a woman, says Tosti.

Socio-economic consequences

According to researcher Dorte Rytter at Aarhus University, there has been an increase between 1990 and 2017 in the amount diagnosed with endometriosis.

Rytter says that the best advice is to go to the doctor much earlier when you feel symptoms.

– If you have several days a month that you have to give up going to work or stay home from school because of pain, you should seek play. These are not pains you have to endure because you are a woman, she says.

An international study from 2011 showed that women with the abdominal disease lose an average of 11 hours of productivity during a working week.

Thus, the disease also has major socio-economic consequences.

– A b disease

Anne Hovmøller is managing director of the Endometriosis Association in Denmark. For over 20 years, she has worked to raise awareness of endometriosis.

– When women’s abdomens are associated with pain and heavy bleeding, it is not the hottest topic of conversation, says Hovmøller.

– This is a b-disease compared to cancer and hearts, which in research are associated with prestige, she continues.