“To have pain is to have certainty; to hear about pain is to have doubt”: Physicians Dismissing Women’s Endometriosis Pain

Across the globe, nearly 178 million women, or 10% of women, suffer from endometriosis (Hudson 2021, 21). Endometriosis is a chronic disease in which a tissue, similar to uterine tissue, forms outside the uterus onto other organs and tissues in the female body (Jones 2015, 1083). The tissue outside of the uterus acts differently than the uterine lining in the uterus in that it doesn’t shed during a woman’s menstrual cycle (Seear 2009, 370). Instead, it bleeds onto organs and tissues creating lesions and cysts (Seear 2009, 370). As a result of this, endometriosis can cause a wide range of physical symptoms, including dyspareunia, gastrointestinal issues, heavy bleeding and, in some cases, infertility (Seear 2009, 370). One of the most common symptoms reported to physicians is chronic pelvic pain (Hudson 2021, 24). Although numerous women are affected by endometriosis globally, the chronic disease remains ignored mainly within the healthcare system and research funding (Hudson 2021, 21). Therefore, its diagnosis is often delayed for many years, its origin is unknown, and the efficacy of available treatment options, such as oral contraceptives, laparoscopic surgery, or pregnancy remains uncertain (Hudson 2021, 21; Jones 2015, 1083, 1107). For many women affected by endometriosis, their chronic pelvic pain is often not believed or taken seriously by physicians (Hawkey et al. 2022, 490; Grace and MacBride-Stewart 2007, 49; Markovic, Manderson, and Warren 2008, 350-51).

This leads to the following question: why are women’s experiences of endometriosis pain disregarded by physicians? It’s essential to dismantle popular perceptions of pain, often presented in research through an objective lens, and adopt a sociological framework (Denny 2018, 9). In this paper, I will examine qualitative interviews with women with endometriosis, as well as highlight my own experience with chronic pelvic pain, to argue that women’s experiences of endometriosis pain are not believed or taken seriously as a result of physicians perceiving the disease as a reproductive disorder, in which they “feminize pain” (Hawkey et al. 2022, 490; Seear 2009, 378). Through the feminization of pain, physicians assert that endometriosis pain is a “normal” experience for women and that they must reinstate traditional gender roles related to marriage and motherhood to “cure” the chronic disease (Grace and MacBride-Stewart 2007, 49-50; Hawkey et al. 2022, 490; Jones 2015, 1107; Markovic, Manderson, and Warren 2008, 358; Seear 2009, 377-78). Women’s pain is not only normalized but also often labelled as psychosomatic (Hawkey et al. 2022, 490; Grace and MacBride Stewart 2007, 49; Markovic, Manderson, and Warren 2008, 350-51). Normalizing pain and attributing it to psychological factors stems from socio-historical beliefs surrounding sexist notions about women’s reproductive health and traditional feminine roles involving childbirth and is reminiscent of perceptions of hysteria (Denny 2018, 35, 136; Grace and MacBride-Stewart 2007, 56; Hawkey et al. 2022, 490; Hudson 2021, 22; Jones 2015, 1090-96). These detrimental perspectives conceal the understanding of endometriosis as a pain disorder and reinforce pain as a gendered struggle (Denny 2018, 138-40; Seear 2009, 378).

Women’s Stories

A common theme persists for women who express their endometriosis pain to their physicians: “To have pain is to have certainty; to hear about pain is to have doubt” (Denny 2018, 182). In other words, it can be suggested that an individual is attuned to their own body enough to discern when something doesn’t feel right (Hawkey et al. 2022, 490). Women who express this feeling to their physicians are often met with total disregard, in which physicians perceive reports of pain as “normal” or psychosomatic (Hawkey et al. 2022, 490; Grace and MacBride-Stewart 2007, 49; Markovic, Manderson, and Warren 2008, 350-51). The dismissal of pain by physicians can be directly applied to my own experience with chronic pelvic pain.

The year 2019 was significant for me: I graduated high school and was set to begin university in the fall semester. This elation quickly diminished, however, when the chronic pelvic pain I’ve experienced since childhood started getting worse, and I began experiencing debilitating pain all the time. It felt as though my pain had overshadowed every aspect of my life, and this began to impact my mental health. I couldn’t attend in-person classes on campus, resulting in low grades, and I avoided nearly all social events out of fear that I would feel ill. At this point in my life, I started to truly listen to my body, and I knew something was wrong. The first time I went to a physician, he told me that it’s “normal” for women to experience significant pain when menstruating and that I would have to “live with it.” This response was incredibly frustrating for me: I couldn’t imagine having to live with unexplained pain that impacted my life so significantly any longer, so I decided to seek support from a different physician. At this appointment, my physician ordered a series of lab tests, which all came back normal, and insisted that since there was “nothing wrong with me.” This response also frustrated me, and I became highly emotional upon hearing the results. My physician then suggested that I probably have depression and anxiety. For the next four years, I faced similar experiences where physicians didn’t believe me or take me seriously, and it was only until late 2023 that a physician told me I most likely have endometriosis. However, this diagnosis only led to more obstacles. For example, instead of addressing my pain, I had various physicians recommend I get pregnant to get rid of the pain. This suggestion almost felt comical to me then. I was a single, 22-year-old, so this advice felt utterly unrealistic. Since then, I’ve been struggling with chronic pelvic pain, and my experiences with physicians dismissing my pain have only made me feel more hopeless than before.

While this is my experience, I argue that my story is not isolated and that countless women worldwide hold similar stories to mine (Hudson 2021, 21; Markovic, Manderson, and Warren 2008, 353-54; Seear 2009, 377-78). This is evident when examining a study conducted in Victoria, Australia, with 30 women aged 20 to 78 impacted by endometriosis (Markovic, Manderson, and Warren 2008). Through in-depth interviews, participants gave accounts of their experiences with physicians in healthcare settings. Researchers Markovic, Manderson, and Warren (2008) uncovered two central themes from these interviews. One of the themes, distinguished by researchers as “endurance,” included stories from multiple women who claimed that their physicians normalized their chronic pelvic pain (Ibid). Some of the women in this study stated that they felt motivated to seek support from a medical professional due to experiencing chronic pelvic pain consistently before, during, and even after menstruation (Ibid, 356). However, many weren’t taken seriously by their physicians, in which their chronic pain was perceived as “normal”. For example, one participant, named Denise, discussed how she experienced considerable pelvic pain, resulting in her mother taking her to seek advice from a physician (Ibid). At her appointment, Denise’s family doctor normalized her pain by asserting to her that “this is what a woman has to put up with” (Ibid). Since her physician found “nothing wrong,” his only advice for Denise was to tolerate the pain and essentially live with it (Ibid). Markovic, Manderson, and Warren identified the second theme as “contest,” which outlined experiences where women’s physicians labelled their chronic pelvic pain as psychosomatic. Monika Leahy described her experience at 16, in which she recalled that one of her physicians wouldn’t believe her and take her seriously regarding her pain (Ibid, 359). This repetitive experience became so stressful for Monika that she threw a “hysterical fit” at one appointment and refused to leave her doctor’s office until she received a referral for a gynecologist (Ibid). Her physician attributed her frustration during this appointment to psychological factors and still wouldn’t take her pain seriously (Ibid).

Some of the women in the study were advised to get pregnant to alleviate their pain and avoid possible infertility in the future (Markovic, Manderson, and Warren 2008, 358). Seear (2009) also discusses this in her study with narratives by 20 women with endometriosis aged 24 to 55 (369). In her article, she argues that women with endometriosis are often held responsible for their pain, and this is demonstrated particularly by physicians advising women to get pregnant (Seear 2009, 377-78). Most women in the study perceived this advice by physicians as unrealistic because they were single, unmarried, very young, or didn’t have the time or financial capacity to have a child (Seear 2009, 377-78). Women’s experiences, including my own, with physicians often involve them feminizing women’s pain in that they normalize it or categorize it as psychosomatic (Hawkey 2022, 490; Markovic, Manderson, and Warren 2008, 356-59). For me and countless other women globally, many physicians will advise getting pregnant to help with pain and/or avoid possible future infertility (Markovic, Manderson, and Warren 2008, 358; Seear 2009, 377-78).

Pain: A Gendered Struggle

It is evident, based on women’s narratives, that endometriosis pain is perceived by physicians as a reproductive disorder instead of a pain disorder (Seear 2009, 378). It’s crucial to examine socio-historical contexts of women’s health to understand why pain is a gendered struggle. From about the mid-19th century, physicians perceived menstruation as an “unfortunate, unpleasant and distasteful subject to address… from which women themselves should be spared” (Hudson 2021, 22). Essentially, when menstruating, physicians perceived women as physically and psychologically indisposed (Hudson 2021, 22). Men were often perceived as superior to women, especially when it came to health because it was widely believed that women were more likely to fall ill, with their sickness perceived to stem from reproductive issues (Hudson 2021, 22). This idea of superiority most likely stems from society’s expectation for men experiencing any form of affliction caused by an illness to conceal it (Denny 2018, 136; Grace and MacBride-Stewart 2007, 49-50). As a result of this, women’s menstrual pain was perceived as “normal,” while men’s pain, in any form, was perceived as “unnatural” (Denny 2018, 136).

While in the mid-19th century, physicians normalized women’s experiences of pain, they later began characterizing their pain as hysteric (Hudson 2021, 22; Jones 2015, 1090). Hysteria was first perceived as a physical disease of the uterus, however, when physicians failed to find the cause and cure for the condition, they began attributing it to psychological factors (Jone, 2015, 1089-95). Essentially, physicians believed that any form of mental instability was caused by something wrong with a woman’s reproductive system (Jones 2015, 1099-1100). Since hysteria was only associated with femininity, any behaviour perceived as deviating from the traditional feminine role was labelled as hysteric (Jones 2015, 1095-96). For example, if a woman weren’t “feminine” enough, in that she didn’t conform to traditional gender norms of marrying young and having children, she would be characterized as hysteric by physicians (Hudson 2021, 22; Jones 2015, 1090-96).

After diagnosing women as hysteric, physicians often encouraged them to conform to traditional feminine roles by encouraging women to get pregnant as a “cure” to their disease (Jones 2015, 1107). Jones (2015) identifies one source from the 19th century in which a doctor encouraged his female patient to get pregnant to prevent more adhesions from forming as a result of her physical condition (1107). Denny (2018) suggests that physicians encouraging women to get pregnant as a treatment for hysteria was most likely influenced by the Ancient Greek’s definition of a “healthy uterus” (35). Hippocrates asserted that sexual intercourse and pregnancy could purify a woman’s body (Denny 2018,  35). When women failed to have children, whether it was due to them being single, unmarried, widowed, or infertile, Hippocrates believed that if a woman didn’t have sex and had children, her uterus would “wander” throughout her body, resulting in harmful physical and psychological symptoms (Denny 2018, 35).

Jones (2015) compares socio-historical perceptions of women’s health to a virus: viruses are everchanging throughout time but never completely diminish (1110). In other words, it is evident that although hysteria is no longer used as a diagnosis today, historical notions about the disease are linked to current perceptions surrounding endometriosis (Denny 2018, 202; Hudson 2021, 24). Likewise to hysteria, endometriosis is defined by physicians as a reproductive disorder rather than a pain disorder (Jones 2015, 1090; Seear 2009, 378). Not only are hysteria and endometriosis defined similarly, but they also present identical symptoms (Jones 2015, 1090). Both diseases are characterized as psychosomatic, and the woman is blamed for her symptoms because she “failed” to conform to traditional feminine roles involving childbirth (Grace and MacBride-Stewart 2007, 56; Jones 2015, 1090-99; Markovic, Manderson, and Warren 2008, 359). Lastly, similar to hysteria, physicians encourage women with endometriosis pain to get pregnant to alleviate their symptoms of pain (Jones 2015, 1107; Markovic, Manderson, and Warren 2008, 358; Seear, 2009, 377-78). It is apparent when examining historical ideas of women’s health and illness why women with endometriosis pain are rarely believed or taken seriously. Their pain is often normalized due to historical beliefs about gendered pain and physicians relying on outdated ideas of women’s pain as psychosomatic (Denny 2018, 136; Grace and MacBride-Stewart 2007, 56; Hawkey et al. 2022, 490; Hudson 2021, 22; Markovic, Manderson, and Warren 2008, 359). Since physicians believe that endometriosis is a reproductive disorder, they advise women to reinstate traditional feminine roles involving childbirth (Jones 2015, 1107; Markovic, Manderson, and Warren 2008, 358; Seear 2009, 377-78).

Endometriosis affects millions of women worldwide, in which chronic pelvic pain is one of the most widely reported symptoms (Hudson 2021, 21-4). Despite countless women experiencing distressing pain, physicians often don’t believe them or take their pain seriously (Denny 2018, 186; Markovic, Manderson, and Warren 2008, 354-59). This can be seen when examining women’s experiences with endometriosis, as well as my own, in which many physicians dismissed chronic pelvic pain associated with endometriosis as “normal” or “psychosomatic” (Markovic, Manderson, and Warren 2008, 354-59). Since endometriosis is perceived as a reproductive disorder instead of a pain disorder, there are numerous instances where physicians advise women to get pregnant as a “cure” to their experiences of pain (Jones 2015, 1107; Markovic, Manderson, and Warren 2008, 358; Seear 2009, 377-78). By analyzing gendered pain through a sociological lens, it is apparent that physicians dismiss women’s endometriosis pain for various reasons. Socio-historical understandings of gender, in which women were perceived as more vulnerable to illnesses than men, and they were especially perceived as physically and psychologically vulnerable when menstruating (Hudson 2021, 22). Because of this, women’s pain became normalized while men’s pain was viewed as unnatural (Denny 2018, 136; Grace and MacBride-Stewart 2007, 49-50). Women’s endometriosis pain is also often labelled psychosomatic and this has direct links to historical notions about hysteria starting in the 19^th-century (Grace and MacBride-Stewart 2007, 56; Hawkey et al. 2022, 490; Hudson 2021, 22; Jones 2015, 1090). Physicians advice involving childbirth likely stems from historical ideas of a “cleansed” uterus created by Ancient Greeks (Jones 2015, 35). To believe and take a woman’s pain seriously is to affirm her experience as real (Denny 2018, 186). To dismiss a woman’s pain is to stigmatize her (Denny 2018, 186). Physicians must recognize the ways in which they feminize pain by relying on outdated sexist beliefs about women’s biology and traditional feminine roles (Denny 2018, 35, 136; Hawkey et al. 2022, 490; Hudson 2021, 22; Jones 2015, 1090-96). Additionally, they should acknowledge that women’s chronic pelvic pain can result in poor mental health, justifiably so, instead of characterizing pain as psychosomatic (Jones 2015,  1105).

References

Denny, Elaine. 2018. Pain: A Sociological Introduction. Cambridge: Polity Press. https://www.vitalsource.com/en-ca/products/pain-a-sociological-introduction-elaine-denny-v9781509527229

Grace, Victoria M. and Sara MacBride-Stewart. 2007. ““Women get this”: Gendered meanings of chronic pelvic pain.” Health, 11(1), 47–67. http://www.jstor.org/stable/26649811

Hawkey, Alexandra, K. Jane Chalmers, Sowbhagya Micheal, Helene Diezel, and Mike Armour. 2022. “”A day-to-day struggle”: A qualitative study on experiences of women with endometriosis and chronic pelvic pain.” Feminism & Psychology, 32(4), 482–500. https://doi.org/10.1177/09593535221083846

Hudson, Nicky. 2021. “The missed disease? Endometriosis as an example of ‘undone science’.” Reproductive biomedicine & 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 treatments of endometriosis.” Women’s Studies, 44(8), 1083–1113. https://doi.org/10.1080/00497878.2015.1078212

Markovic, Milica, Lenore Manderson, and Narelle Warren. 2008. “Endurance and contest: women’s narratives of endometriosis.” Health, 12(3), 349–367. http://www.jstor.org/stable/26649838

Seear, Kate. 2009. “”Nobody really knows what it is or how to treat it”: Why women with endometriosis do not comply with healthcare advice.” Health, Risk & Society, 11(4), 367–385. https://doi.org/10.1080/13698570903013649