Endometriosis is a disease which affects an estimated 200 million individuals worldwide, yet most people don’t understand it and many cases go misdiagnosed. Read on to take a step toward changing how endometriosis is handled.
March is Endometriosis Awareness Month. Endometriosis is a gynecological condition with symptoms including extremely painful periods, painful sex and infertility. It causes womb tissue to appear in other parts of the body, leading to inflammation and scarring throughout these tissue deposits during menstruation. Though endometriosis is often referred to solely in the context of women, it can also affect intersex, transgender and gender-nonconforming people. Across the globe, an estimated 200 million individuals are affected, which is roughly equivalent to one in ten people.
Endometriosis has a debilitating impact on the quality of life of those who experience it, yet getting a diagnosis still tends to be an incredibly difficult process. According to research, it takes an average of seven and a half years between a patient’s first consultation regarding their symptoms and their receival of a firm diagnosis.
Endometriosis symptoms can be different for each person, immediately making diagnosis more complex. It also offers a particular challenge in the way it affects multiple organs at once. Still, many cite communication issues and a lack of recognition for the disease as their belief for why a diagnosis was so difficult to come by.
In one case study , a patient said she felt that her physicians consistently implied that the severity of her symptoms was due to a “mental health condition.” She argued that her pain was often dismissed as psychological rather than being taken at face value and that she was made to feel that “she was crazy.” She also felt that without her mother’s fierce advocacy, the physicians might never have pursued additional testing.
This is a similar sentiment to those echoed by many others who share this patient’s experience, including pop singer Halsey who has long been an outspoken advocate for awareness regarding reproductive illnesses. She shared via Twitter that receiving an endometriosis diagnosis “was the most bittersweet moment because it meant I wasn’t crazy! I wasn’t a ‘baby!’ I had every right to be feeling like the world was caving in.”
It’s clear there’s a disconnect between the current wider understanding of endometriosis and the system of appraisal necessary to actually identify the problem as soon as symptoms appear and accurately treat it. However, taking this month to listen and learn about the realities of this disease and how we can each be advocates for ourselves and others is certainly a step in the right direction.
“Endometriosis: why is it so hard to diagnose?” Circle Health Group, circlehealthgroup.co.uk, accessed Feb. 5, 2023.
“Endometriosis: A Common and Commonly Missed and Delayed Diagnosis,” Patient Safety Network, psnet.ahrg.gov, accessed Feb. 5, 2023.
“Halsey Warns They Might Go ‘MIA’ After Being Hospitalized for Endometriosis: ‘I Am Doing the Best I Can,’” US Weekly, usmagazine.com, accessed Feb. 5, 2023.