Executive Summary
Research and social consideration of endometriosis is informed by hysteria discourse, significantly hindering the allocation of funding and destigmatisation, resulting in a lower quality of life for people with endometriosis.
Funding allocation, clinical diagnosis and social progress is impeded by gender bias.
The individual, social and economic cost of endometriosis is detrimental to women’s ability to engage in social practices, ultimately further stigmatising feminine health.
Introduction
Conservative estimates assume endometriosis affects approximately 1 in 9 people with uteruses by the age of 44 in Australia (Armour et al 2023, 594). Despite having similar prevalence rates to diabetes, endometriosis is significantly underfunded and undersupported by the Australian Government. The average cost for an individual to live with endometriosis is $25,127 (adjusted for inflation) per year (Armour et al 2019, 7), with the estimated total economic burden of endometriosis sitting at $7.4 billion per year (Ernst and Young 2019, 6). Current medical advice often “urges women to return to traditional gender roles rather than explore options that would destabilise the medical and social status quo” (Jones 2015, 1110), functioning more as a means of controlling women than aiding them. Yet, despite the individual, social and economic significance of this disease, infrastructure remains systematically underdeveloped. The current National Action Plan for Endometriosis (NAPE), established in 2018 and the most prominent action taken by the government in regard to endometriosis, fails to properly address the needs of people with endometriosis, or alleviate concerns about underfunding.
This paper will draw parallels between the historical progression of hysteria discourse and the modern construction of support systems for endometriosis. This is significant not only because of the prevalence of endometriosis, but also to inform policymakers of the need to assess gender bias within the seemingly clinical and non-partisan policy area of health.
Gender Bias & the Nature of Research, Funding & Clinical Practice
Hysteria has existed to some degree since the development of Hippocratic disease frameworks in Ancient Greece, through to the mid-twentieth century (Nezhat et al 2012). At times, hysteria has been thought of as related to the uterus, at other times, the psyche, but, with the discrediting of the disease, it can be assumed that all cases were a matter of misdiagnosis. Some experts (Hudson 2022, Nezhat et al 2012) believe that in the majority of cases, hysteria was endometriosis, constituting “one of the most colossal mass misdiagnoses of human history” (Nezhat et al 2012, 1), hiding an epidemic-level disease. This is likely largely due to the nature of research, funding and clinical practice being dominated entirely by men for most of the time hysteria was a credited disease. Looking at broader social trends beyond the field of health also requires an acknowledgement of the persistence of misogyny during this time, as professionals are equally susceptible to the prejudices of their society.
This is especially evident in the case of Elizabeth Greed, 51, Needlewoman (1888) (Archive 1). Greed was submitted to St George’s Hospital and Medical School in London in 1888, seeking help for an inability to walk after mistreatment at another hospital. Greed was immediately assumed to be afflicted by hysteria, with her intake notes beginning, “She was an olive-skinned woman. Her manner was hysterical” (1888). Implicit in this account is the intersectional bias that allowed medical practitioners to take precedence over the accounts of women thought to be hysterical. Greed’s lived experience with her symptoms was ignored and her voice is never heard directly, though she is paraphrased once. At the time, St George’s – like most hospitals in the western world – had exclusively male doctors, only admitting its first four female medical students in 1915, well after Greed’s death in 1888 (Manson and Ahvensalmi 2022). Considering this gender imbalance and the lack of rights and respect afforded to women in the late nineteenth century, it is reasonable to assume gender bias both within the medical field and of medical practitioners, contributed significantly to medical malpractice in Archive 1.
People with endometriosis have both an opposite and eerily similar experience in modern society. Unlike the propensity to over diagnose hysteria by ignoring and silencing patients’ voices, endometriosis is underdiagnosed, though for exactly the same reason. People with endometriosis, like people misdiagnosed with hysteria, have their lived experiences ignored. This wilful ignorance can be used to explain the unmet needs of people with endometriosis by the NAPE and the National Health and Medical Research Council (NHMRC). In its most recent progress report, the NAPE has failed to adequately address needs and areas of concern identified by Australians with endometriosis. Of the $49.9 million allocated for clinical management and care, $25.5 million went towards technology “to assist in the investigation of infertility for those with severe endometriosis” (Department of Health and Aged Care 2023, 2). However, a study conducted on the research priorities of people with endometriosis found that when asked the research question “What are the fertility implications of endometriosis?”, only 6% of participants considered this a high priority (Armour et al 2023, 595). Across two studies (Armour et al 2023, Giese et al 2023) considering this, Australians with endometriosis consistently prioritised treatment and management, access to diagnosis and investigating causes above all else. This reflects historical experiences of hysteria patients having their needs and voices ignored and misrepresented by official bodies and initiatives.
To meet the needs identified by people with endometriosis, significant research would need to be undertaken. However, this is hindered by a lack of funding. From 2000-2022, the NHMRC expended $18.9 million towards endometriosis research, with the NAPE committing an additional $28.97 million (Australian Institute of Health and Welfare (AIHW) 2023, Department of Health and Aged Care 2023). Comparatively, the NHMRC’s diabetes disease expenditure since 2000 is over $1 billion, despite similar rates of prevalence and the relative lack of research regarding endometriosis (AIHW 2023). The major difference between these diseases, excluding a clinical perspective, is the gendered nature of those affected. As endometriosis only affects those with uteruses, patients are overwhelmingly female, indicating that gender bias exists not only in medical malpractice, but in the infrastructures that facilitate practice at all.
This biased treatment is further mirrored by hysteria discourse in Millais Culpin’s Spiritualism and the New Psychology: An Explanation of Spiritualist Phenomena and Beliefs in Terms of Modern Knowledge (1920) (Archive 2). Archive 2 is situated in a time where hysteria was thought to be psychosomatic, and was also published after World War I, when the definition of hysteria expanded to include men suffering from what would now be diagnosed as PTSD. Despite being considered to affect both men and women, writing about their experiences could not be more polarising. What follows is two excerpts from Archive 2, detailing archetypal cases of a man and woman suffering from hysteria.
“As an example, I will quote a case of a soldier who had an impulse to attack any single companion, which was cured by bringing into consciousness the repressed memory of a gruesome hand-to-hand fight in which he killed his opponent.”
“Or imagine another type, the pampered girl who has never had to face a trouble or unpleasant task and has come to regard her own wishes as the supreme law, until at last the time comes when some desire, some wish that she cannot or will not face and conquer, remains ungratified. She feels the need to express her feelings, to obtain that sympathy that she thinks she deserves.”
Discourse around the presentation of hysteria in men is respectful, in women it is assumed to be entirely imagined without due cause. This language is reflected in clinical discourse surrounding endometriosis today. The following is an excerpt from an interview with a gynaecologist in 2019 (Young et al 2019, 349).
“In her case… I think it [her symptoms] stemmed from a bit of parental, matrimonial disharmony, so there’s a little bit of that psychosomatic expression of the wider problem within the family.”
Language that attributes endometriosis to psychosomatic causes reproduces many of the disbelief narratives surrounding hysteria, promoting the erasure of women’s lived experiences. Gender bias has been a part of hysteria discourse for a significant part of its history, and continues to be relevant to endometriosis discourses today. Thinking historically about medical malpractice on the basis of gender could encourage policymakers to develop infrastructure and legislature to combat this, breaking the cycle of misogyny in medicine.
Wilful Ignorance & Non-Knowledge
Beyond ignoring people with endometriosis’ lived experiences, accepting endometriosis as an ‘enigma’ also reproduces harmful discourses present throughout the history of hysteria. Non-knowledge is defined by Hudson as “the choice to accept gaps in a field of knowledge” (2021, 22), and has the effect of both creating and reinforcing the systematic privileging of certain voices.
Despite being the focus of much medical discourse, especially in the nineteenth century, “the age of hysteria” (Micale 1993, 497), little is agreed upon by way of definition. The disease remains ambiguous, with some refusing to define it, including Culpin in Archive 2:
“As usual, I shrink from a definition, but in this case I have good reason. Every writer who describes hysteria expresses his own ideas about it, and as the ideas of no two writers are alike some definitions scarcely seem to refer to the same subject.”
Some theorise that definitions were kept purposefully vague to allow clinicians to use hysteria diagnoses as a means to control women (Jones 2015). This same theory is reconstructed in regard to endometriosis (Hudson 2021). Endometriosis, like hysteria, has no clear aetiology, which allows hysteria discourse to be reproduced in the field, and results in some discrepancies between official definitions and symptoms lists, promoting misinformation. The ambiguity surrounding endometriosis has, for example, led to the development of a number of misogynistic myths, including that endometriosis is a “career woman’s disease” (Hudson 2021, 23), affecting women who have children later in life.
Concluding Statement & Recommendations
The historical progression of hysteria discourse is at risk of being recreated for people living with endometriosis. Significant changes in research, funding and clinical practice need to be made to prevent this.
Misogyny continues to pervade much of the infrastructure upholding health services and institutions in Australia, including the NAPE and the NHMRC.
Non-knowledge persists in discourse surrounding endometriosis, which needs to be combatted via awareness campaigns, empathetic clinical training and research.
It is recommended that significant funding be allocated to endometriosis research. Research areas should directly target the concerns of people living with endometriosis, and be developed in partnership with this target community.
Bibliography
Armour, Mike , Donna Ciccia, Anusch Yazdani, Luk Rombauts, Leesa Van Niekerk, Ruth Schubert, and Jason Abbott. 2023. “Endometriosis research priorities in Australia.” Australian and New Zealand Journal of Obstetrics and Gynaecology 63, no. 4, 594-598. https://doi.org/10.1111/ajo.13699
Armour, Mike, Kenny Lawson, Aidan Wood, Caroline A. Smith, and Jason Abbott. 2019. “The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: A national online survey.” PLoS ONE 14, no. 10. https://doi.org/10.1371/journal.pone.0223316
Australian Institute of Health and Aged Care. 2023. Diabetes: Australian facts. https://www.aihw.gov.au/reports/diabetes/diabetes/contents/data-gaps-and-opportunities
Australian Institute of Health and Welfare. 2023). Endometriosis: Data gaps and opportunities. https://www.aihw.gov.au/reports/chronic-disease/endometriosis-in-australia/contents/data-gaps-and-opportunities
Department of Health and Aged Care. 2023. Endometriosis Progress Report: 2023 Update. https://www.health.gov.au/sites/default/files/2023-02/endometriosis-progress-report-2023.pdf
Department of Health and Aged Care. 2023. What we’re doing about endometriosis. https://www.health.gov.au/topics/chronic-conditions/what-were-doing-about-chronic-conditions/what-were-doing-about-endometriosis
Ernst & Young. 2019. The cost of endometriosis in Australia. EndoActive. https://endoactive.org.au/wp-content/uploads/29May2019-FINAL-The-Cost-of-Endometriosis-in-Australia-EY-EndoActive-Report.pdf
Giese, Nora, Emilee Gilbert, Alexandra Hawkey, and Mike Armour. 2023. “Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis.” Medicina (Kaunas) 59, no. 9. https://doi.org/10.3390%2Fmedicina59091655
Hudson, Nicky. 2022. “The missed disease? Endometriosis as an example of ‘undone science’”. Reproductive BioMedicine and Society Online, 14, 20-27. https://doi.org/10.1016/j.rbms.2021.07.003
Jones, Cara E. 2015. “Wandering Wombs and “Female Troubles”: The Hysterical Origins, Symptoms, and Treatment of Endometriosis. Women’s Studies 44 no. 8, 1083-1113. https://doi.org/10.1080/00497878.2015.1078212
Manson, Carly and Juulia Ahvensalmi. 2022. Collection RB - Rare Books. St George’s University of London Archives and Special Collections. https://archives.sgul.ac.uk/rare-books
Micale, Mark S. 1993. “On the "Disappearance" of Hysteria: A Study in the Clinical Deconstruction of a Diagnosis”. Isis 84 no. 3, 496-526. https://doi.org/10.1086/356549
Nezhat, Camran, Farr Nezhat, and Ceana Nezhat. 2012. “Endometriosis: ancient disease, ancient treatments”. Fertility and Sterility 98 no. 6, 1-62. https://doi.org/10.1016/j.fertnstert.2012.08.001
Young, Kate, Jane Fisher, and Maggie Kirkman. 2019. ““Do mad people get endo or does endo make you mad?”: Clinicians’ discursive constructions of Medicine and women with endometriosis”. Feminism & Psychology 29 no. 3, 337-356. https://doi.org/10.1177/0959353518815704
Archives
[Archive 1] St George’s University of London Archives and Special Collections. 2020. Item 132 - Elizabeth Greed, 51, Needlewoman. https://archives.sgul.ac.uk/565b-tq8p-s972
[Archive 2] Culpin, M. 1920. Spiritualism and the New Psychology: An Explanation of Spiritualist Phenomena and Beliefs in Terms of Modern Knowledge. Project Gutenberg. https://www.gutenberg.org/cache/epub/36908/pg36908-images.html#CHAPTER_IX
Marissa Wilkinson is a Greek-Australian writer currently studying writing and innovation at the University of Technology, Sydney. When she's not writing, she enjoys crocheting, her cats, and crocheting in spite of her cats' attempts at her wool. Marissa is currently shortlisted for the Nillumbik Prize for Contemporary Writing 2024 and her creative work can be found in Hot Pot Magazine.
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