Beginning as far back as ten years before even being diagnosed, women with endometriosis utilise the healthcare system more than women without this chronic illness. Research sheds new light on widespread delays in diagnosis.
Endometriosis is a chronic – often painful – illness that only affects women. New research shows potential for shortening the path to diagnosis and treatment. In the years prior to being diagnosed with endometriosis, women with the chronic illness have more contact than average with their GP, private gynecologist and the hospital service.
Researchers analyzed 129,696 Danish women's utilization of the healthcare sector, with particular focus on the 21,616 women who were diagnosed with endometriosis between 2000 and 2017.
"We can see that even 10 years before being diagnosed, women affected by endometriosis utilize the healthcare system slightly more, and we can see that the interaction increases in the years leading up to their diagnosis of the illness," says 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,"
Anna Melgaard, PhD Student, Department of Public Health, Aarhus University
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 points out:
"This can hopefully help shed light on the fact that women should be referred for further diagnosis sooner."
Bypassing a years-long process
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 explains:
"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 normalize symptoms, which can result in incomplete examinations, inadequate referrals and referrals to the wrong specialist," she says.
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," says 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," says Anna Melgaard.
What is endometriosis?
- Endometriosis is a chronic inflammatory condition where tissue similar to the lining in the uterus is found outside the uterus, for example in the fallopian tubes, on the ovaries, peritoneum, intestines, or bladder.
- The main symptom of the illness is severe menstrual pain. In the long term, people with endometriosis can develop chronic, disabling pain, which is also present when the woman is not menstruating.
- Other symptoms include pain during intercourse, decreased fertility, bowel issues and bleeding from the rectum.
- The cause of endometriosis is unknown, but the illness appears to be hereditary.
- Treatment options include hormone therapy, pain medication and in some cases surgery.
- It is estimated that 5-10% of all women of childbearing age have endometriosis. However, many have no symptoms.
Melgaard, A., et al. (2023). Utilization of healthcare prior to endometriosis diagnosis: a Danish case–control study. Human Reproduction. doi.org/10.1093/humrep/dead164.