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Endometriosis: Bridging Historical Bias in Healthcare

Endometriosis is a chronic condition that is characterised by the presence of tissue similar to the lining of the uterus that grows outside the uterus. Among the many symptoms of endometriosis are extreme period pain that is often debilitating, pain during sexual intercourse, and heightened infertility. Despite its high prevalence and debilitating symptoms, the average time it takes to receive a diagnosis for endometriosis in the UK is 8 years, during which women’s quality of life and reproductive health are severely impacted [1].  Research shows a clear link between delayed diagnosis and adverse mental health outcomes, with historical records even documenting that women with endometriosis have a higher risk of suicide [2].


Endometriosis remains a significant challenge in British healthcare, despite it being a debilitating condition that has been estimated to affect around 1 in 10 women and people with uteruses of reproductive age in the UK. This prolonged delay is indicative of a serious medical knowledge gap regarding endometriosis support and management. The problem is complex, arising from gendered pain perceptions, insufficient funding for research, and historical medical biases. This article seeks to highlight research and funding disparities, explore the historical roots of gendered pain bias and medical gaslighting, and promote increased funding, education, and awareness for endometriosis in the UK.


Understanding female 'hysteria' and medical gaslighting

History proves indispensible in understanding why there is so often a mismanagement and delay in diagnosis of endometriosis. Originating in ancient Greece, “hysteria” associated a range of mental and physical symptoms with the wandering of the womb (hystera) [3]. Some of the symptoms of hysteria, as believed by the ancient Greeks, were fainting, anxiety, the loss or increase of sexual desire, a swollen abdomen and irritability [4]. “Hysteria” was then used for centuries after to dismiss and trivialise women’s complaints, particularly those concerning pelvic pain or irregular menstruation, and became a term steeped in misogynistic notions of the emotional and mental instability of women. The legacy of notions of female “hysteria” (now known more frequently as “medical gaslighting”) has proved long-lasting, with it manifesting itself in a the continued mismanagement and under-diagnosis of endometriosis, among other gynaecological conditions. Many individuals with endometriosis endure widespread and pervasive medical gaslighting, with healthcare professionals minimising, trivialising, or completely invalidating their symptoms, perpetuating misgoynistic historical stigmas surrounding women’s menstrual pain. 


It is critical to understand how endometriosis and “hysteria” have historically interacted. It reinforces the long-held notion that women’s emotions exert a significant influence on their physical health, which feeds into the contemporary stereotype of the attention-seeking, hypochondriac female patient [5].  In addition, this historical background clarifies the ways in which patriarchal norms and societal views of women’s reproductive anatomy interact. Physicians have continually connected endometriosis to women’s deviations from the social norms of motherhood or marriage. Therefore the understanding of endometriosis as a serious physical gynaecological condition must be extended to acknowledge its role as a cultural construction that informs misogynistic beliefs about women in relation to healthcare. [6]


Gender bias and pain management

Gender bias in pain management exacerbates the struggles faced by individuals diagnosed with endometriosis. The notion that women are “hysterical” and therefore often exaggerating their pain has led to crucial and significant differences in the treatment and support that women receive for endometriosis pain. Research indicates that women are not only less likely than men to receive appropriate diagnostic referrals, but that they are also more likely to be prescribed minor tranquillisers and antidepressants rather than analgesic pain medication [7]. Additionally, women are more likely to be believed as experiencing an emotional or psychological cause behind their pain rather than a physical cause [8]. These obstacles to treatment and gender biases in endometriosis treatment are only intensified when race and class become factors. [9]


This systemic bias presents a very real and dangerous reality for women with endometriosis attempting to find aid and support for their endometriosis as, more often than not, they are required to advocate for themselves for years in the face of professionals minimising, trivialising, and gaslighting them about their physical symptoms. Not only has this impediment of access to effective pain relief led to many women taking it upon themselves to bare the pain and self-remedy, often interrupting their work lives and personal commitments, but it has also perpetuated feelings of isolation and disbelief, contributing to deteriorating mental health and a lower quality of life. A study conducted at Manchester Metropolitan University showed the extent to which women with endometriosis experienced “medical gaslighting” by healthcare professionals, with participants reporting that they experienced years of debilitating pain before being diagnosed, often being told their pain was psychological [10]. When asked how they felt about their endometriosis treatment, most people said they felt angry, anxious, and helpless at the hands of the NHS [11].


Research and funding gaps

Tracing the misogynistic and gendered history of endometriosis and “hysteria” allows us to partially understand the severe underfunding that endometriosis research receives. The stark disparities in endometriosis research and research funding compared to other, often non-gyaneocological, conditions highlight the critical need for coordinated action. The impact of endometriosis on more than 1.5 million women in the UK is profound, but research continues to lag behind in the medical field [12]. Reproductive health and childbirth accounted for just 2.1% of publicly funded medical research in 2018, according to an analysis by the U.K. Clinical Research Collaboration [13]. Only 11 of the over 8000 projects funded by the National Institute for Health Research since 2006 have involved endometriosis, according to Emma Cox, Chief Executive of Endometriosis UK. [14]


Recommendations

Endometriosis presents a number of challenges for British healthcare that call for a multidimensional response. Firstly, in order to improve early detection, speed up access to treatment, and dispel stigma surrounding endometriosis, there needs to be a greater awareness and education of the disease among healthcare professionals primarily, and the general public. Training programmes should be implemented to equip medical professionals with the adequate knowledge and skills to be able to properly detect and diagnose endometriosis so that individuals suffering can be prescribed pain medication and go through the appropriate treatment. 


Second, more funding for research is desperately needed to support studies that try to understand endometriosis, find biomarkers for early detection, and create targeted treatments for each patient. Government agencies, academic institutions, and patient advocacy groups must work together to mobilise funds and bring endometriosis research further up the agenda. 


Conclusion

In the UK, endometriosis poses a serious health concern due to its high prevalence, extensive diagnosis times, and insufficient treatment. Research funding disparities, gendered pain perceptions, and historical biases have all contributed to the ongoing marginalisation of endometriosis-affected women in the NHS and general healthcare system. A concerted effort is needed to overcome ingrained gender norms and biases that jeopardise the health and wellbeing of women, as well as to raise awareness, educate the public, and secure funding, in order to address these systemic barriers. By working together to prioritise endometriosis research we can work towards a future where all women receive quick diagnosis, compassionate care, and efficient treatment.


Written by Fiona Shabaj, Thrive Research Hub Member


 

References


[1] 'Endometriosis takes almost a decade to be diagnosed in the UK - our research has revealed some of the reasons why', The Conversation. Available here.

[2] 'Endometriosis is a whole-body disease', Nezhat Library. Available here.

[3] 'The Unfortunate History of Hysteria and Endometriosis', Somedays. Available here.

[4] ibid

[5] 'Medical Myths About Gender Roles Go Back to Ancient Greece. Women Are Still Paying the Price Today', Time. Available here.

[6] 'Wandering Wombs and "Female Troubles": The Hysterical Origins, Symptoms, and Treatments of Endometriosis', Jones, 2015. Available here.

[7] 'Medical Myths About Gender Roles Go Back to Ancient Greece. Women Are Still Paying the Price Today', Time. Available here.

[8] ibid

[9] ibid

[10] ''Gaslit by doctors': UK women with endometriosis told it is 'all in their head'', The Guardian. Available here.

[11] ibid

[12] ibid

[13] 'Endometriosis: Why is there so little research', Medical News Today. Available here.

[14] ibid



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