(Shock) Entering the Labyrinth: Traversing Feminism, Disability, and the Politics of Endometriosis

This chapter lays the theoretical and methodological groundwork for a feminist disability analysis of endometriosis, a chronic gynecological condition that has long been dismissed, pathologized, and misunderstood by medicine. Drawing from feminist disability studies, rhetorical theory, medical humanities, literary criticism, and autotheory, the chapter positions endometriosis not only as a biomedical disorder, but as a cultural, political, and discursive site of power. It critiques the historic and ongoing medical neglect of femme-coded pain and reframes chronic illness as a space of epistemic resistance and feminist knowledge production. Interdisciplinary in scope, the chapter weaves archival inquiry with autotheoretical reflection, showing how personal experience becomes method and how storytelling challenges dominant frameworks of objectivity and clinical detachment. The chapter outlines the book’s structure and purpose, presenting endometriosis as a lens through which to interrogate reproductive injustice, gendered suffering, and the limitations of the medical and social models of disability studies. Through a critical engagement with disability theory and cultural representations of pain, this chapter opens a conversation about the politics of legibility, the need for disability studies to address disabilities that are purely negative in nature, and the radical possibilities of feminist rage. By centering lived experience and challenging dominant logics of normalcy, this chapter calls for a reimagining of what it means to live with, and speak from, pain. Access this chapter Tax calculation will be finalised at checkout Purchases are for personal use only Similar content being viewed by others Notes - 1. Throughout this work, I use “woman,” “femmes,” and “women” as historical markers to describe those assigned female at birth (AFAB) who were identified in medical archives, popular culture, and feminist theory as suffering from endometriosis. This usage reflects the language of physicians and scholars of previous decades, for whom “woman” was a category bound to reproductive function and pathology. At the same time, I want to acknowledge that not all individuals with endometriosis identify as women. In describing endometriosis in present-day contexts, I therefore use phrases such as “people/individuals with endometriosis,” “women and femmes,” “individuals assigned female at birth (AFAB),” and “femme-coded illness.” These terms highlight both the fluidity of gender identity among those living with the disease and the historical construction of endometriosis as a disorder of femininity. As Kaltsas et al. (2024) argue, endometriosis occurs in cis women, transgender men, nonbinary AFAB individuals, meaning that it is not solely a “women’s” disease. Gabrielle Jackson (2019) also comments on the reduction of endometriosis to “women’s health,” stating that reducing endometriosis to menstruation erases the full-body complexity of the disease. It is also essential to clarify that endometriosis is not a menstrual disorder. While dysmenorrhea is one primary symptom, the condition is defined by chronic, systemic pain and lesions that may exist throughout the body, regardless of whether an individual menstruates. For this reason, terms such as “menstruators” are both reductive and inaccurate: they obscure the complexity of the illness and reinscribe the very medical misogyny I critique, reducing people to reproductive capacity rather than recognizing their pain. My approach emphasizes that endometriosis is not simply about reproduction or menstruation, but about the embodied experience of pain situated at the intersection of gender, power, and medical authority.

Agarwal, Sanjay K., et al. 2019. Clinical diagnosis of endometriosis: A call to action. American Journal of Obstetrics and Gynecology 220 (4): 354–361. American Psychiatric Association. 2013. Diagnostic and statistical manual of mental disorders. 5th ed., text rev. ed. Washington, DC: American Psychiatric Association Publishing. Arruda, M. S., et al. 2003. Time elapsed from onset of symptoms to diagnosis of endometriosis in a cohort study of Brazilian women. Human Reproduction (Oxford, England) 18 (4): 756–759. https://doi.org/10.1093/humrep/deg136. Ballweg, Mary Lou. 1997. Blaming the victim: The psychologizing of endometriosis. Obstetrics and Gynecology Clinics of North America 24:441–453. Bobel, Chris. 2019. The managed body: Developing girls and menstrual health in the Global South. New York: Palgrave Macmillan. Bobel, Chris, et al., eds. 2020. The Palgrave handbook of critical menstruation studies. New York: Palgrave Macmillan. Cheong, Y., et al. 2008. Laparoscopic surgery for endometriosis: How often do we need to re-operate? Journal of Obstetrics and Gynaecology 28 (1): 82–85. Cole, Jennifer M., et al. 2021. “The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity. Feminism & Psychology 31 (2): 171–191. Cox, Emma. 2020. Endometriosis awareness month 2020 launches to tackle the fact 54% don’t know about endometriosis. Endometriosis UK. https://www.endometriosis-uk.org/endometriosis-awareness-month-2020-launches-tackle-fact-54-dont-know-about-endometriosis#:~:text=33%25%20of%20women%20do%20not,young%20women%20is%20alarmingly%20low. Accessed 12 March 2023. Criado-Perez, Caroline. 2019. Invisible women: Exposing data bias in a world designed for men. London, UK: Chatto & Windus. deGruy, F., et al. 1987. Somatization disorder in a family practice. The Journal of Family Practice 25 (1): 45–51. Fauconnier, Arnaud, Elsa Dagongeville, Cyrille Huchon, Yves Ville, and Bruno Falissard. 2009. Measurement of acute pelvic pain intensity in gynecology: A comparison of five methods. Obstetrics and Gynecology 113 (2): 260–269. Foucault, Michel. 1975. Discipline and punish: The birth of the prison. English edition: Foucault, Michel. 1995. Translated by Alan Sheridan. Vintage. Fournier, Lauren. 2022. Autotheory as feminist practice in art, writing, and criticism. Cambridge, MA: MIT Press. Garland-Thomson, Rosemarie. 2002. Integrating disability, transforming feminist theory. NWSA Journal 14 (3): 1–32. Garland-Thomson, Rosemarie. 2011. Misfits: A feminist disability concept. Hypatia 26 (3): 591–609. Greene, Rebecca, et al. 2009. Diagnostic experience among 4,334 women reporting surgically diagnosed endometriosis. Fertility and Sterility 91 (1): 32–39. Hanisch, Carol. 1970. The personal is political. In Notes from the second year: Women’s liberation, ed. Shulamith Firestone and Anne Koedt, 76–77. New York: Independently published. Hawkey, Alexandra, et al. 2022. “A day-to-day struggle”: A comparative qualitative study on experiences of women with endometriosis and chronic pelvic pain. Feminism & Psychology 32 (4): 482–500. Hudson, Nicki. 2021. The missed disease? Endometriosis as an example of “undone science”. Reproductive Biomedicine & Society Online 13 (14): 20–27. https://doi.org/10.1016/j.rbms.2021.07.003. Huntington, Annette, and Jean A. Gilmour. 2005. A life shaped by pain: Women and endometriosis. Journal of Clinical Nursing 14:1124–1132. Jack, Dana Crowley. 1993. Silencing the self: Women and depression. New York: William Morrow. Jackson, Gabrielle. 2019. Pain and prejudice: A call to arms for women and their bodies. London, UK: Piatkus. Johnston-Robledo, Ingrid, and Joan C. Chrisler. 2013. The menstrual mark: Menstruation as social stigma. Sex Roles 68:9–18. Jones, Cara E. 2015. Wandering wombs and “female troubles”: The hysterical origins, symptoms, and treatments of endometriosis. Women’s Studies 44 (8): 1083–1113. Jones, Cara E. 2016. The pain of endo existence: Toward a feminist disability studies reading of endometriosis. Hypatia 31 (3): 554–571. Kaltsas, A., et al. 2024. Endometriosis in transgender men: Bridging gaps in research and care—A narrative review. Biomedicines 12 (7): 1481–1495. https://doi.org/10.3390/biomedicines12071481. Kübler-Ross, Elizabeth. 2014. On death & dying. New York: Simon and Schuster. Laws, Sophie. 1990. Issues of blood: The politics of menstruation. New York: Palgrave Macmillan. Lindeman, Tracey. 2023. BLEED: Destroying myths and misogyny in endometriosis care. Toronto, ON: ECW Press. Manderson, Lenore, et al. 2008. Circuit breaking: Pathways of treatment seeking for women with endometriosis in Australia. Qualitative Health Research 18 (4): 522–534. Nnoaham, Kelechi E., et al. 2011. Impact of endometriosis on quality of life and work productivity: A multicenter study across ten countries. Fertility and Sterility 96 (2): 366–373. https://doi.org/10.1016/j.fertnstert.2011.05.090. Sanmiguel, Lisa. 2000. From “career woman’s” disease to “an epidemic ignored”: Endometriosis in U.S. culture since 1948. Ph.D. diss., Chicago: University of Illinois. Seear, Kate. 2014. The makings of a modern epidemic: Endometriosis, gender and politics. Melbourne: Routledge. Vostral, Sharra L. 2008. Under wraps: A history of menstrual hygiene technology. New York: Bloomsbury. Wood, Julian. 1983. Boys’ sex talk—Groping toward sexism? Unpublished paper. Yeung, Patrick. 2014. The laparoscopic management of endometriosis in patients with pelvic pain. Obstetrics and Gynecology Clinics of North America 41 (3): 371–383. https://doi.org/10.1016/j.ogc.2014.05.002. Yong, Jason R., Peter M. Mullins, and Neil Bhattacharyya. 2022. Prevalence of chronic pain among adults in the United States. Pain 163 (2): 328–332. Young, Kate, et al. 2019. “Do mad people get endo or does endo make you mad?”: Clinicians’ discursive constructions of medicine and women with endometriosis. Feminism & Psychology 29 (3): 337–356. Author information Authors and Affiliations Corresponding author Rights and permissions Copyright information © 2026 The Author(s), under exclusive license to Springer Nature Switzerland AG About this chapter Cite this chapter Rovito, M. (2026). (Shock) Entering the Labyrinth: Traversing Feminism, Disability, and the Politics of Endometriosis. In: Cripping Endometriosis. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-032-15681-5_1 Download citation DOI: https://doi.org/10.1007/978-3-032-15681-5_1 Published: Publisher Name: Palgrave Macmillan, Cham Print ISBN: 978-3-032-15680-8 Online ISBN: 978-3-032-15681-5 eBook Packages: Social SciencesSocial Sciences (R0)