Undiagnosed endometriosis patients visit their doctors

Endometriosis is a condition that only affects women and is persistent and frequently painful. The length of the path to diagnosis and treatment may be shortened, according to a recent study.

Compared to the general population, endometriosis patients see their general practitioner (GP), private gynecologist, and hospital staff more frequently.

Researchers looked at how 129,696 Danish women used the healthcare system, paying close attention to the 21,616 women who received endometriosis diagnoses between 2000 and 2017.

"We can see that even 10 years before being diagnosed, women affected by endometriosis utilise the healthcare system slightly more, and we can see that the interaction increases in the years leading up to their diagnosis of the illness," said PhD student Anna Melgaard from the Department of Public Health at Aarhus University.

She is the first author of the study, which has just been published in the scientific journal Human Reproduction.

"The study is particularly interesting to women with endometriosis because previous research shows they often experience repeated contact with healthcare professionals and a feeling of being tossed about the healthcare system. Our study validates this perception," said Anna Melgaard.

The study is also interesting for healthcare professionals who interact with women of childbearing age and who are being passed around the healthcare sector, she pointed out, "This can hopefully help shed light on the fact that women should be referred for further diagnosis sooner.”

Endometriosis is an illness associated with long delays in diagnosis. It can take up to ten years from the time a woman first experiences symptoms until she is diagnosed.

There are probably several reasons for this, Anna Melgaard explained, "Women can find it difficult to distinguish between normal and abnormal symptoms and might therefore not seek medical attention immediately. Doctors may also have insufficient knowledge about endometriosis and can tend to normalise symptoms, which can result in incomplete examinations, inadequate referrals and referrals to the wrong specialist,” she said.

The researchers hope the study can help shed light on the serious consequences of delayed diagnosis - not only for the women affected but for the healthcare sector as well, which could use its resources better.

"With this study, we can underscore that the delayed diagnosis of endometriosis is not due to the fact that women do not visit the doctor," said Anna Melgaard.

The researchers are currently following up on the study at the Department of Public Health. The goal is to help healthcare professionals identify women with endometriosis-like symptoms in order to reduce the time from symptom onset to diagnosis.

"We’re now taking a look at the specific reasons why women contact the healthcare system. The aim is to identify any contact patterns for patients with undiagnosed endometriosis. This would help women get diagnosed and treated faster - and hopefully avoid spending years adrift in the healthcare system," said Anna Melgaard.