The Womb Wanders Not: Enhancing Endometriosis Education in a Culture of Menstrual Misinformation

Guidone, Heather C.

doi:10.1007/978-981-15-0614-7_22

Cited by 16 publications

(11 citation statements)

References 76 publications

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“…Disability studies takes a social-constructionist perspective to impairment and illness, considering how such concepts such as “disability” often frame individuals as flawed in opposition to a preconceived idea of normalcy ( 36 ). Endometriosis has similarly been constructed around the idea of individual flaws, as seen through discourses of hysteria and the 20th-century idea that endometriosis was a “career woman's disease” that occurred when women delayed childbirth to have careers ( 10 , 11 , 13 ). Endometriosis cannot be divorced from the histories and power structures that have come to establish how it is represented today and disability studies helps frame how these external forces can contribute to how it is experienced by patients ( 13 , 20 ).…”

Section: Theoretical Frameworkmentioning

confidence: 99%

“…It is common for people living with endometriosis to experience dismissal and mistreatment associated with a long history of medical discrimination and sexism around chronic pain, particularly pain associated with gender and menstruation ( 10 – 13 ). The contemporary conception of endometriosis is, in the words of Redwine, “trapped by errant words of the past,” and based on outdated conceptions of the disease and patient-blaming dating as far back as 400 BCE ( 11 , 13 , 14 ). Myth and misconceptions continue to haunt the representation of endometriosis today, where it is commonly referred to as “enigmatic” and “puzzling” by medical professionals and patients alike.…”

Section: Introductionmentioning

confidence: 99%

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Mediating Pain: Navigating Endometriosis on Social Media

Holowka

2022

Front. Pain Res.

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With the rise of social media, many people with endometriosis have turned to platforms such as Facebook and Instagram in the face of lacking care. This qualitative study focuses on why and how people with endometriosis use these platforms. Despite the risks of misinformation and conflict on social media, the results of this research show that many people with endometriosis find these spaces beneficial, particularly for information sharing, social support, representation, and advocacy practices around endometriosis. Using data collected from surveys and interviews, this study reveals that people with endometriosis often use social media to understand, experiment with, and navigate their symptoms and that these efforts deserve recognition by endometriosis researchers and practitioners. This article proposes that, in order to improve future patient-practitioner and patient-researcher relationships for endometriosis, we must understand, not dismiss, the social media practices of those with endometriosis. By understanding how and why patients turn to social media, clinicians and researchers can build toward more patient-oriented futures.

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Section: Theoretical Frameworkmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Mediating Pain: Navigating Endometriosis on Social Media

Holowka

2022

Front. Pain Res.

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“…Bias against menstruating bodies is persistent in medical textbooks, and this may carry forward as health professionals work with menstruators [22]. While conditions related to menstrual health are manifold, endometriosis provides a glaring example: The delays and gaps in diagnosis, care, and treatment often mean menstruators wait years for a diagnosis, and in the meantime their pain is dismissed or misdiagnosed [23,24].…”

Section: Plos Global Public Healthmentioning

confidence: 99%

The persistent power of stigma: A critical review of policy initiatives to break the menstrual silence and advance menstrual literacy

Olson

Alhelou²,

Kavattur³

et al. 2022

PLOS Glob Public Health

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Menstruation is shrouded in stigma and shame—that is the common refrain in burgeoning initiatives on menstrual health and hygiene. Public policies alone cannot undo stigma and enact social change, but they do interact with social norms. They can reflect and adopt stigmatizing attitudes and, as a result, institutionalize, formalize, and legitimize stigma; or they can actively challenge and denounce it and mitigate existing discrimination. Against this background, we explored whether and how policies on menstrual health and hygiene address menstrual stigma and advance menstrual literacy based on an analysis of 34 policy documents and 85 in-depth interviews with policy-makers and advocates in four countries: India, Kenya, Senegal, and the United States. We found that policies recognized menstrual stigma and set out to break the silence surrounding menstruation and advance menstrual education, but they did not contribute to dismantling menstrual stigma. Policy-makers seemed constrained by the very stigma they sought to tackle, resulting in hesitancy and missed opportunities. Policies raised awareness of menstruation, often with great noise, but they simultaneously called for hiding and concealing any actual, visible signs of menstruation and its embodied messiness. Educational initiatives mostly promoted bodily management and control, rather than agency and autonomy. As a result, policies might have succeeded in breaking the silence around menstruation, but stigma cannot be broken as easily. We first need to recognize its (invisible) power and its impacts in all spheres of life in order to actively challenge, dismantle, and redefine it.

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“…In many cases, this is not only abdominal pain but also pain during defecation and urination, making daily life difficult. It is associated with constant taking of analgesics and a feeling of living with a chronic disease [ 32 , 33 , 34 ] ( Figure 1 ).…”

Section: Physical and Mental Symptoms Of Endometriosismentioning

confidence: 99%

The State of Health and the Quality of Life in Women Suffering from Endometriosis

Ruszała

Dłuski

Winkler

et al. 2022

JCM

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Quality of life is related to good health, family relations, feeling of self-esteem, and ability to cope with difficult situations. Endometriosis is a chronic condition which affects different areas of life. The lack of satisfaction in everyday life is mainly due to constant pain. The process of adjusting to a life with illness is associated with negative emotions. The aim of the article is to review the current state of knowledge concerning the impact of social and medical factors on a population of women affected by endometriosis. Women with endometriosis have an impaired quality of life compared to the general female population. Psychological consequences of endometriosis include: depression, anxiety, powerlessness, guilt, self-directed violence, and deterioration of interpersonal relations. It may contribute to lower productivity at work and less satisfying intimate life. A multi-disciplinary, evidence-based care is needed. The disease can take away the ability to be physically active, obtain an education, work continuously, and interact with friends. Social support and cognitive-behavioral therapy are extremely important for healing.

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The Womb Wanders Not: Enhancing Endometriosis Education in a Culture of Menstrual Misinformation

Cited by 16 publications

References 76 publications

Mediating Pain: Navigating Endometriosis on Social Media

Mediating Pain: Navigating Endometriosis on Social Media

The persistent power of stigma: A critical review of policy initiatives to break the menstrual silence and advance menstrual literacy

The State of Health and the Quality of Life in Women Suffering from Endometriosis

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