How can Endometriosis be used as an example to illustrate disparities in reproductive healthcare?

Photo by Nadezhda Moryak

The UK Government has recently appointed a Women’s Health Ambassador, Dame Lesley Regan in order to enact structural changes to close the widening health gap in the UK (Department of Health and Social Care, 2022). The creation of this position is confirmation from the UK government that there is a problematic disparity in the quality of reproductive healthcare and treatment available. A senior health leader has commented that dismissal of reproductive health problems has contributed to worsening care as treatment waitlists now stand at around half a million (Devlin, 2022). Endometriosis is one of these health problems and is estimated to impact at least 190 million people of reproductive age worldwide (WHO, 2021). The condition is incredibly complex and remains poorly understood by medical institutions and the public (Guidone, 2020).

This article will look at how endometriosis can be used as an example to highlight common disparities in reproductive healthcare and treatment through (1) the treatment of patients by medical professionals, (2) low treatment satisfaction (3) stigma around accessing treatment. Moreover, it can be seen as a point of sociological interest to better understand how illnesses are socially and culturally constructed and influenced.

Endometriosis is a chronic illness characterised by unusual growth of the uterine lining (endometrium) in numerous regions of the body (Whelan, 2007). There is currently no known cure and no guarantee that even if removed, the endometrium won’t return (Moradi et al., 2014). The average waiting time for a diagnosis in the UK is around eight years (Endometriosis UK, 2021) and with increased pressure on NHS services, it is unlikely to improve. One of the reasons for the long wait times is the similarity between endometriosis symptoms and menstruation (Jones, 2016). As a result, doctors often disregard the symptoms as normal or expected in those who are menstruating. The three dominant symptoms are pain-related, these are: Chronic Pelvic Pain (CPP), Dysmenorrhoea (Painful Periods), and Dyspareunia (Painful Intercourse) (Tripoli et al., 2021). CPP and painful periods alone are typically not enough to guarantee a diagnosis as they are a routine part of menstrual pain (Jones, 2016). Other symptoms include infertility, difficulty getting pregnant, painful bowel movements, nausea, and weight gain (Roomaney & Kagee, 2017). This intense combination of symptoms can also have detrimental impacts on the sufferer’s mental health and wellbeing (Facchin et al., 2017).

Two processes that have arguably had a significant impact on experiences of endometriosis are medicalisation and neoliberalism. The first process is medicalisation, by which a medical framework is used to understand a problem, even one which hasn’t typically been considered as part of the medical domain (Conrad, 1992: 211). At first glance, it might seem counter-intuitive that there is anything problematic about the medicalisation of a medical condition. However, by medicalisation we are referring to a general orientation towards the body; not the body of a person in general, but the body of a patient. To connect this with a greater feministic lens that is followed in our series the significance of this process is its contribution to constructing certain bodies as deviant and as problems that require fixing (Dillaway, 2017). The biomedical model developed under medicalisation uses the heterosexual, cis male, as the ‘natural’ body (Clarke et al., 2010: 159). Meaning, that medical interventions and treatment plans are fundamentally designed and applied with this in mind. Ultimately, even despite the many current medical advances, there is much less known about women’s bodies than men’s, and there is a lack of special consideration when treating members of the LGBTQ+ community (McNiel & Elertson, 2018).

The second process, neoliberalism, in a UK health context has intensified vulnerability with the privatisation of services, insecurity of supplies, alienation of diverse populations, and increasing economic uncertainty (Sparke and Williams, 2022). Aside from its economic impacts the process also intersects with other types of structural violence, namely racism and sexism (Sparke & Williams, 2022) which further aggravate pre-existing inequalities in reproductive healthcare. The coupling of these two processes has unique repercussions for healthcare, particularly when looking at endometriosis a condition involved with menstruation and fertility. To explore these repercussions further, it’s important to look at the three aspects of endometriosis that make it a sound example to look at disparities in healthcare and treatment, these being:

1. The treatment of patients by medical professionals

2. Low treatment satisfaction

3. Stigma around accessing treatment

A theme present in literature exploring experiences of gynecological care in the UK is patients feeling unsatisfied with how they are treated by medical professionals leading to low treatment satisfaction (see Booth et al., 2005; Nappi et al., 2016; Cleghorn, 2021). One of the leading causes of friction between endometriosis patients and medical professionals is the interactions in appointments leading up to getting a diagnosis. A study by menstrual care brand Yoppie, identified that you could fly to the moon 456 times before receiving a diagnosis of endometriosis (Broster, 2021). During the process, sufferers’ reports of pain are often ignored, especially pain reports from women of colour (Hoffman & Tarzian, 2001). Sexist, racist, and classist cultural perceptions on how particular individuals deal with pain influence how willing doctors and medical professionals are to investigate symptoms beyond infertility (Cho, 2019; Cleghorn, 2021). This may have been passed from the history of the condition which is rooted in patriarchal ideology around hysteria, a condition that came to be a medical metaphor for any unexplainable ‘female’ medical problem (Devereux, 2014). Moreover, the relationship between endometriosis and menstruation means one of the most common indicators of the condition is chalked up to expected menstrual pain and a natural part of puberty (Seear, 2009).

As indicated by the above evidence, treatment satisfaction for endometriosis remains low (Foster & Leonardi, 2021. Once a diagnosis is reached, treatments are extremely limited and are centered around preserving fertility with remaining symptoms ignored (Jones, 2016). Another common feature of reproductive and sexual health treatment, those who can carry a child are seen as a ‘means in the process of reproduction’ (Fathalla, 2008: 2), symptomatic of both medicalisation and neoliberalism infecting reproductive healthcare. Those who wish to extend their treatment for endometriosis beyond hormonal birth controls or painkillers will either be greeted with a long waiting list for surgery or encouraged to access private healthcare (Devlin, 2022) in true neoliberal style. Endometriosis treatment displays the infertile body is seen as a problem that must be fixed, whilst other just as debilitating symptoms are failed to be taken seriously (Jones, 2016). This focus on fertility provides unique difficulties for those who do not want to have children, transgender women, older people, and non-binary individuals.

The third factor highlighted is the stigma around accessing treatment. Due to endometriosis’ similarities to menstruation and general shame and silence related to reproductive health many refrain from accessing treatment (Devlin, 2022). Stigma surrounds prominent symptoms of endometriosis, including painful periods, heavy bleeding, sexual dysfunction, and infertility. The normalisation of hormonal birth control as a lifestyle drug means those who refuse to take it must face judgement (Le Guen et al., 2021) and have their choice put up for political debate. Understanding of the LGBTQ+ experience of endometriosis is limited, but in reproductive health generally, evidence shows only 30% of transgender individuals access routine medical care, fearing poor treatment as a result of their gender identity (Schwartz et al., 2019). Thus, with a condition that is poorly understood and what is understood being associated with cis-women, it’s not hard to imagine that treatment satisfaction for these communities would be low.

Ultimately, as displayed through the example of endometriosis, reproductive healthcare is a much contested, underfunded, and under-researched area of health care. The disparities in this sector that can be highlighted through experiences of endometriosis illustrate a need for more focused research on how medicine is not only biological but also a socio-cultural process influenced by pre-existing structures. General debates within reproductive and sexual healthcare, which will be explored further throughout the series as a whole, impact endometriosis greatly as it is still a widely misunderstood condition. Hence, there is a lack of contribution from sufferers themselves and a heavy reliance on medicalisation, a biomedical understanding, and the doctor's prior knowledge of the symptoms. Which, are often vulnerable to neoliberalism and other harmful structures, as well as cultural understandings of menstruation, infertility, and uterine health.

Reference List:

Booth, K., Beaver, K., Kitchener, H., O’neill, J. and Farrell, C., 2005. Women’s experiences of information, psychological distress and worry after treatment for gynaecological cancer. Patient Education and Counseling, 56(2), pp.225-232.

Broster, A. (2021) ‘You could fly to the moon 456 times before getting an endometriosis diagnosis, study finds’. Forbes. https://www.forbes.com/sites/alicebroster/2021/07/29/you-could-fly-to-the-moon-456-times-before-getting-an-endometriosis-diagnosis-study-finds/?sh=3ccd66a45870 [Date accessed: 01.07.22]

Cho, H.L., 2019. Can intersectionality help lead to more accurate diagnosis?. The American Journal of Bioethics, 19(2), pp.37-39.

Clarke, E. A., Mamo, L., Fosket, R. J., Fishman, R. J., and Shim, K. J. (2010) Biomedicalization: Technoscience, Health, and Illness in the U.S. Duke University Press.

Cleghorn, E. (2021) Unwell Women: a Journey Through Medicine and Myth in a Man-Made World. Weidenfeld & Nicolson. London.

Conrad, P. (1992) Medicalisation and Social Control. Annual Review of Sociology, Vol. 18, 209-232.

Department of Health and Social Care., (2022). Dame Lesley Regan appointed Women’s Health Ambassador. (Accessed at:https://www.gov.uk/government/news/dame-lesley-regan-appointed-womens-health-ambassador) [Date Accessed: 01.07.22]

Devereux, C., 2014. Hysteria, feminism, and gender revisited: The case of the second wave. ESC: English Studies in Canada, 40(1), pp.19-45.

Devlin, H., (2022). Dismissal of women’s health problems as ‘benign’ leading to soaring NHS lists. The Guardian. (Accessed at:https://www.theguardian.com/society/2022/jun/02/dismissal-of-womens-health-problems-as-benign-leading-to-soaring-nhs-lists) [Date Accessed: 05.07.22]

Dillaway, H.E., (2017). Speaking to a Broader Audience about Medicalization.

Facchin, F., Buggio, L., Dridi, D. and Vercellini, P., (2021). A woman’s worth: The psychological impact of beliefs about motherhood, female identity, and infertility on childless women with endometriosis. Journal of health psychology, 26(7), pp.1026-1034.

Fathalla, M.F. and Fathalla, M.M., (2008). Sexual and reproductive health: Overview. International Encyclopedia of Public Health, 5, pp.695-705.

Foster, W.G. and Leonardi, M., (2021). Endometriosis–novel approaches and controversies debated. Reproduction and Fertility, 2(4), pp.C39-C41.

Guidone, H.C., (2020). The Womb Wanders Not: Enhancing Endometriosis Education in a Culture of Menstrual Misinformation. The Palgrave Handbook of Critical Menstruation Studies, pp.269-286.

Hoffmann, D.E. and Tarzian, A.J., (2001). The girl who cried pain: a bias against women in the treatment of pain. Journal of Law, Medicine & Ethics, 29(1), pp.13-27.

Le Guen, M., Schantz, C., Régnier-Loilier, A. and de La Rochebrochard, E., 2021. Reasons for rejecting hormonal contraception in Western countries: A systematic review. Social science & medicine, 284, p.114247.

Jones, C.E., (2016). The pain of endo existence: Toward a feminist disability studies reading of endometriosis. Hypatia, 31(3), pp.554-571.

McNiel, P.L. and Elertson, K.M., 2018. Advocacy and awareness: Integrating LGBTQ health education into the prelicensure curriculum. Journal of Nursing Education, 57(5), pp.312-314.

Moradi, M., Parker, M., Sneddon, A., Lopez, V. and Ellwood, D., (2014). Impact of endometriosis on women’s lives: a qualitative study. BMC women’s health, 14(1), pp1-12.

Nappi, R.E., Palacios, S., Particco, M. and Panay, N., 2016. The REVIVE (REal Women’s VIews of Treatment Options for Menopausal Vaginal ChangEs) survey in Europe: country-specific comparisons of postmenopausal women’s perceptions, experiences and needs. Maturitas, 91, pp.81-90.

Jones, C.E., (2016). The pain of endo existence: Toward a feminist disability studies reading of endometriosis. Hypatia, 31(3), pp.554-571.

Tripoli, T.M., Sato, H., Sartori, M.G., de Araujo, F.F., Girão, M.J. and Schor, E., (2011). Evaluation of quality of life and sexual satisfaction in women suffering from chronic pelvic pain with or without endometriosis. The journal of sexual medicine, 8(2), pp.497-503.

Roomaney, R., Kagee, A. and Heylen, S., (2020). Biopsychosocial predictors of symptoms of depression in a sample of South African women diagnosed with endometriosis. Health care for women international, 41(3), pp.308-329.

Seear, K., (2009). The etiquette of endometriosis: stigmatisation, menstrual concealment and the diagnostic delay. Social science & medicine, 69(8), pp.1220-1227.

Sparke, M. and Williams, O.D., (2022). Neoliberal disease: COVID-19, co-pathogenesis and global health insecurities. Environment and Planning A: Economy and Space, 54(1), pp.15-32.

Whelan, E., (2007). ‘No one agrees except for those of us who have it’: endometriosis patients as an epistemological community. Sociology of health & illness, 29(7), pp.957-982.

World Health Organization., (2021). Endometriosis. (Accessed at: https://www.who.int/news-room/fact-sheets/detail/endometriosis

) [Date Accessed: 01.07.22]

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