How advocacy, awareness and algorithms could shorten the long wait for diagnosis and treatment

Endometriosis affects approximately 200 million people worldwide. Despite its prevalence, people living with the disease often wait on average 7.5 years between onset of symptoms and diagnosis. This delay is due to a variety of reasons, including medical dismissal, low prioritization of the condition, and its overall misrepresentation in research funding, politics, and the media.

Although often portrayed as a female reproductive disease, endometriosis also occurs in people who have had a hysterectomy, transgender men, genderfluid and non-binary people, pre-menstrual and post-menopausal people, and in rare cases , cisgender men.

Its symptoms usually include pain during menstruation, as well as chronic pain, infertility, pain during intercourse, fatigue and more. Despite this impact of the whole body on quality of lifeendometriosis is usually associated with simply having “bad periods”.

We are four authors from three countries looking at different aspects of endometriosis diagnosis, education and patient advocacy. This article is from a online joint presentation of our research examining potential ways to improve patient awareness and care, and promote faster diagnosis.

Our methods include social, scientific, and qualitative research, including interviews, surveys, focus groups, participant observation, and collaborations with people with endometriosis. We have identified some clear changes that are needed to promote disease awareness and subsequently reduce diagnostic delays.

Widespread training on endometriosis

Maria Tomlinson’s research asked young people about their awareness and knowledge of endometriosis.
(Maria Kathryn Tomlinson), Author provided

Our research suggests that education about endometriosis is sorely lacking, meaning many people with the condition don’t even know it exists.

In focus groups with 77 young people aged 16 to 19 in the UK, Maria found that only 28 had heard of endometriosis before. Of these, two were able to define it precisely. Most of those who had heard of the disease had done so through friends and family, with some also hearing about it on social media or the internet. None of them had been told about it as part of their formal education.

Eileen’s survey of 271 people with endometriosis showed that only nine people (3.3%) had heard of endometriosis in primary school (elementary, middle or high school), with a few mentioning that they had heard about it briefly in nursing school.

Although Eileen’s interviews and surveys have shown that social media can be very beneficial for people with endometriosis, Maria’s focus groups have shown that social media is not very effective in reaching people with endometriosis. don’t have the disease. People with endometriosis often put a lot of work into sharing information about endometriosis online, but it often doesn’t reach the general population.

Accurately depict menstrual pain and pain related to endometriosis

As Mie identifies in her fieldwork on adolescent menstruation and her interviews with patients with endometriosis in Denmark, the normalization of menstrual pain is one of the main factors delaying diagnosis in people with endometriosis. endometriosis.

Although not everyone with endometriosis gets their period or has menstrual pain, it is one of the most common symptoms and one of the first. Many people are encouraged to use painkillers and hormonal contraceptives to manage their pain, instead of having it checked out. Being prescribed birth control pills without a thorough investigation of symptoms or without consideration of gender identity were also concerns identified by Maria’s focus group participants.

Cropped image of pharmacist's hands holding birth control pills with woman seen from behind
Many people are encouraged to use painkillers and hormonal contraceptives to manage their pain instead of having it checked out.

Maria’s participants also shared how they thought advertisements for menstrual products undermined the severity of menstrual pain. They thought that more realistic representations of painful periods could encourage more young people having their period to seek medical attention when needed.

Mie’s work identifies the often cyclical nature of endometriosis symptoms as something that may discourage patients from seeking care because they feel their symptoms aren’t as extreme when they miss their period. Greater awareness that cyclical symptoms can also indicate diseases could help patients seek treatment sooner.

Eileen’s social media analysis shows that people with endometriosis often use social media to represent their lived experiences of period pain and endometriosis with complexity, unlike common media representations.

A word cloud answering the question 'What does 'endometriosis' mean to you?'  The most important words are pain, time and life.
A word cloud answering the question “What does endometriosis mean to you?”
(Eileen Mary Holowka), Author provided

In a recent example, Amy Corfeli from the podcast and social media platform @in16yearsofendo used Instagram, Twitter and Medium to correct inaccuracies in the television broadcast Grey’s Anatomyrepresentation of endometriosis. Unfortunately, Grey’s Anatomy has a bigger platform, but social media pages like Amy’s, @endoQueer and @endo_black attempt to bring more nuance and diversity to media representations of endometriosis.

Improve diagnostic time

Endometriosis is an “invisible” disease, which means that it cannot be seen just by looking at someone. Including endometriosis in elementary school curricula, covering it more widely in medical school, and portraying it more widely in the media would help make the disease more apparent so that people with symptoms seek treatment sooner.

However, the burden of care cannot rest solely with patients, especially for a disease like endometriosis that comes with a long history of blame for patients. Interventions are medically necessary, but limited resources, long wait times, suboptimal diagnostic techniques and knowledge, and low prioritization of endometriosis all increase diagnostic delays.

It is possible that interventions such as Female (Finding Endometriosis using Machine Learning), coordinated by Ulrik, could help improve diagnosis in the future. This project, emerging from Denmark, aims to develop and demonstrate a platform that uses algorithms to detect and help diagnose and treat people with endometriosis, in collaboration with their healthcare providers.

In order to develop this type of work, a multidisciplinary approach to endometriosis is needed, including not only medical research, but also the type of qualitative work described in this story.

Sharon D. Cole