REFRAMING ENDOMETRIOSIS

Reframing Endometriosis

Past: The myth. You have yourself to blame. Fertility.

Present [research]

Future: A whole body condition.

Cure! Funding [broken]. Pain, Stigma, Infertility. We neither die nor recover. [Barriers] Not female enough, not white enough, not disabled enough.

The way endometriosis (endo) is framed is key to how it is understood, experienced, treated, and researched. This piece is based on a British Academy, Wellcome Trust, and Birmingham City University 2023 conference - Reframing Endometriosis: Power Politics and Potential Futures, Exploring Past, Present and Future Understandings of Endo.

Many endo patients report a health professional has advised 'getting pregnant' to manage or treat their condition. It is a myth rooted in historical medical misogyny and racism.

Endo was referred to as a “career woman's disease” up until the 1990s, based on a myth that it predominantly affected white affluent women who had “put off” having children to pursue education and careers.

The Ancient Greek idea of “hysteria”, where the womb was literally thought to wander throughout the body causing female ailments an irrationality, is alive today in accusations of endo patients as “hysterical” and exaggerating their pain.

Endo patients report receiving medical attention when they want to conceive but not when they want to conceive but not when their daily experience, often riddled with pain, is intolerable.

Medical classifications of endo as a gynaecological, menstrual or “women's” disease focus on the uterus. However, symptoms affect the whole body and, ironically, the condition exists when endo tissue is outside of the uterus.

Due to lack of research funding and education, clinicians do not have good options to offer endo patients. There is no easy way to diagnose it, contributing to a diagnostic delay of eight years on average.

Women of colour, lesbian and queer women, trans-masculine, non-binary and intersex individuals, and young people are underserved and excluded from research, patient activism, and media representations. This has severe consequences to their health.

Endo is called “benign” because it is not fatal (like cancer). This contributes to it not being taken seriously and undermines the severity of the disease for many.

Hormonal (contraceptive) medications suppress and mask symptoms; they are not a cure. They have many side effects and can't be used when people want to get pregnant.

The heartbreak of trans and gender-diverse people not being seen as endo sufferers. Some report that pain was taken more seriously when presenting as male.

Compounding layers of stigma around pain and infertility.

Research funding for “women's health” remains a fraction of that available for “men's health”.

Many communities have to fight for their members to be seen and treated, reflecting the colonial nature of how patients are perceived.

There are many silos that keep people concerned about endo from working together, such as divides between clinicians and researchers, specialists and GPs, social scientists and biomedical scientists, and professionals and patient activists.

Endometriosis has long been considered a disease localised to the pelvis. It is now understood to be a whole body condition. Recognising this can lead to improved research, diagnosis and treatment.

A blood test that could more quickly and less invasively diagnose endometriosis is a hoped-for innovation. Novel research has shown that genetics play a role in determining whether you get endo, and that there is a genetic link between endometriosis and other chronic conditions.

The endo community continues to fight for a cure.

The anger of whole communities for being dismissed for decades.

Improving endo care cannot be shouldered by patients alone. Clinicians, researchers, politicians, and patients must work together collaboratively to bring about change.