The Pain of Endo Existence: Toward a Feminist Disability Studies Reading of Endometriosis

Published online by Cambridge University Press: 01 January 2020 Disability scholars have critiqued medical models that pathologize disability as an individual flaw that needs treatment, rehabilitation, and cure, favoring instead a social‐constructionist approach that likens disability to other identity categories such as gender, race, class, and sexuality. However, the emphasis on social constructionism has left chronic illness and pain largely untheorized. This article argues that feminist disability studies (FDS) must attend to the common, chronic gynecological condition endometriosis (endo) when theorizing pain. Endo is particularly important for FDS analysis because the highly feminized and sexualized nature of endo pain is a major source of disability. Because medical treatments of endo enhance fertility rather than provide pain relief, those with endo must not only have access to medical services to manage their pain, but also demand better medical management of their pain as well as disability accommodations for their pain. Thus, I propose a pain‐centric model of disability that politicizes pain through social‐constructionist and medical models of disability by attending to the lived experiences of pain. - Type - Articles - Information - Copyright - Copyright © 2016 by Hypatia, Inc. Americans with Disability Act (ADA). http://www.ada.gov/pubs/adastatute08.htm#12102 (accessed June 5, 2015).Google Scholar Ayuso, A., Fadare, O., and Khabele, D. 2013. A case of extrauterine endometrial stromal sarcoma in the colon diagnosed three decades after hysterectomy for benign disease. Case Reports in Obstetrics and Gynecology (4): 1–3.CrossRefGoogle ScholarPubMed Ballweg, Mary Lou. 2004. Endometriosis: The complete reference for taking charge of your health. New York: McGraw‐Hill.Google Scholar Bawin, I., Troisfontaines, E., and Nisolle, M. 2013. Rare case of ureteral endometriosis nine years after hysterectomy. Revue Médicale de Liège 68 (7–8): 378–81.Google ScholarPubMed Bridge‐Cook, Philippa. 2014. Endometriosis and risk of suicide. Hormones Matter. http://www.hormonesmatter.com/endometriosis-risk-suicide/ (accessed September 24, 2015).Google Scholar Carol, Ruth, ed. 1994. Alternatives for women with endometriosis. Chicago: Third Side Press.Google Scholar Crow, Liz. 1996. Including all our lives: Renewing the social model of disability. In Encounters with strangers: Feminism and disability, ed. Morris, Jenny. London: The Women's Press.Google Scholar Denny, Elaine, Cully, Lorraine A., Papadopoulos, Irena, and Apenteng, Patricia. 2011. From womanhood to endometriosis: Findings from focus groups with women from different ethnic groups. Diversity in Health and Care 8 (3): 167–80.Google Scholar Denny, Elaine, and Mann, Christopher H. 2007. Endometriosis‐associated dyspareunia: The impact on women's lives. Journal of Family Planning and Reproductive Health Care 33 (3): 189–93.CrossRefGoogle ScholarPubMed Erevelles, Nirmala. 2011. Disability and difference in global contexts: Enabling a transformative body politic. New York: Palgrave Macmillan.CrossRefGoogle Scholar Fox, Luke. 2014. Endometriosis and transgender: Beyond gendered reproductive health. Hormones Matter. http://www.hormonesmatter.com/endometriosis-transgender-beyond-gendered-reproductive-health/ (accessed September 24, 2015).Google Scholar Fukunaga, M. 2012. Paratesticular endometriosis in a man with prolonged hormonal therapy for prostatic carcinoma. Pathology Research and Practice 208 (1): 49–61.CrossRefGoogle Scholar Garland‐Thompson, Rosemarie. 2011. Integrating disability, transforming feminist theory. In Feminist disability studies, ed. Hall, Kim Q.Bloomington: Indiana University Press.Google Scholar Giannarini, Gianluca, Scott, Cathryn Anne, Moro, Umberto, Grossetti, Barbara, Pomara, Giorgio, and Selli, Cesare. 2006. Cystic endometriosis of the epididymis. Urology 68 (1): 203.e1–3.CrossRefGoogle ScholarPubMed Gupta, Jhumka. 2014. Endometriosis is a social justice issue. The Huffington Post, October 21. http://www.huffingtonpost.com/jhumka-gupta/endometriosis-is-a-social_b_5986690.html (accessed June 5, 2015).Google Scholar Jones, Georgina, Jenkinson, Crispin, and Kennedy, Stephen. 2004. The impact of endometriosis upon quality of life: A qualitative analysis. Journal of Psychosomatic and Obstetric Gynecology 25: 123–33.CrossRefGoogle ScholarPubMed Jung, Karen Elizabeth. 2011. Chronic illness and education equity: The politics of visibility. In Feminist disability studies, ed. Hall, Kim Q.Bloomington: Indiana University Press.Google Scholar Lamp, Sharon, and Carol Cleigh, W. 2011. A heritage of ableist rhetoric in American feminism from the eugenics period. In Feminist disability studies, ed. Hall, Kim Q.Bloomington: Indiana University Press.Google Scholar Levy, B. S., Apgar, B. S., Surry, E. S., and Wysocki, S. 2007. Endometriosis and chronic pain: A multispecialty roundtable discussion. Journal of Family Practice 56 (3): S3–13.Google ScholarPubMed Linton, Simi. 2006. Reassigning meaning. In The disability studies reader, ed. Davis, Lennard. New York: Routledge.Google Scholar Linton, Simi. 2010. My body politic: A memoir. Ann Arbor: University of Michigan Press.Google Scholar Manero, Manuel García, Royo, Pedro, Olartecoechea, Begoña, and Alcázar, Juan Luis. 2009. Endometriosis in a postmenopausal woman without previous hormonal therapy: A case report. Journal of Medical Case Reports 3 (1): 135.CrossRefGoogle Scholar Martin, C. D., Johnson, E., Wechter, M. E., Leserman, J., and Zolnoun, D. A. 2011. Catastrophizing: A predictor of persistent pain in women with endometriosis at 1 year. Human Reproduction. 26 (11): 3078–84.CrossRefGoogle ScholarPubMed Martin, J. D., and Hauck, A. E. 1985. Endometriosis in the male. American Surgery 51 (7): 426–30.Google ScholarPubMed McRuer, Robert. 2002. Compulsory able‐bodiedness and queer/disabled existence. In Disability studies: Enabling the humanities, ed. Garland‐Thompson, Rosemarie, Jo Bruggemann, Brenda, and Snyder, Sharon L.New York: MLA Press.Google Scholar McRuer, Robert. 2006. Crip theory: Cultural signs of queerness and disability. New York: New York University Press.Google Scholar Mintz, Susannah B. 2011. On a scale from 1 to 10: Life writing and lyrical pain. Journal of Literary and Cultural Disability Studies 5 (3): 243–60.CrossRefGoogle Scholar Missmer, S. A., Hankinson, S. E., Spiegelman, D., Barbieri, R. L., Marshall, L. M., and Hunter, D. J. 2004. Incidence of laparoscopically confirmed endometriosis by demographic, anthropometric, and lifestyle factors. American Journal of Epidemiology 160 (8): 784–96.CrossRefGoogle ScholarPubMed Mollow, Anna. 2012. Is sex disability? In Sex and disability, ed. McRuer, Robert and Mollow, Anna. Durham, N.C.: Duke University Press.Google Scholar Morris, Kerry‐Ann. 2006. Living well with endometriosis: What your doctor doesn't tell you that you need to know. New York: Harper‐Collins.Google Scholar Nielsen, Kim. E. 2012. A disability history of the United States. Boston: Beacon Press.Google Scholar Nnoaham, K. 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): 366–73.CrossRefGoogle ScholarPubMed Older, Julia. 1985. Endometriosis—an often undetected cause of infertility and other major medical problems. New York: Charles Scribner's Sons.Google Scholar Olive, David, ed. 2005. Endometriosis in clinical practice. Abingdon, U.K.: Taylor and Francis.CrossRefGoogle Scholar Patsavas, Alyson. 2014. Recovering a cripistemology of pain: Leaky bodies, connective tissue, and feeling discourse. Journal of Literary and Cultural Disability Studies 8 (2): 203–18.CrossRefGoogle Scholar Phillips, Robert H., and Motta, Glenda. 2000. Coping with endometriosis: A practical guide. New York: Avery.Google Scholar Price, Margaret. 2015. The bodymind problem and the possibilities of pain. Hypatia 30 (1): 268–84.CrossRefGoogle Scholar Redwine, David B. 2009. 100 questions and answers about endometriosis. Sudbury, Mass.: Jones and Bartlett.Google Scholar Redwine, David B. 2013. Endopaedia. http://endopaedia.info/ (accessed January 14, 2016).Google Scholar Rimke, Heidi Marie. 2000. Governing citizens through self‐help literature. Cultural Studies 14 (1): 61–78.CrossRefGoogle Scholar Roberts, Dorothy. 1997. Killing the black body: Race, reproduction, and the meaning of liberty. New York: Vintage.Google Scholar Rousso, Harilyn. 2013. Don't call me inspirational: A disabled feminist talks back. Philadelphia: Temple University Press.Google Scholar Samuels, Ellen. 2003. My body, my closet: Invisible disability and the limits of coming‐out discourse. GLQ: A Journal of Gay and Lesbian Studies 9 (1/2): 233–55.CrossRefGoogle Scholar Sanmiguel, Lisa. 2000. From “career woman's disease” to “an epidemic ignored”: Endometriosis in US culture since 1948. PhD diss., Department of Communication, University of Illinois at Urbana‐Champaign.Google Scholar Schuster, Meike, and Mackeen, Dhanya A. 2015. Fetal endometriosis: A case report. Fertility and Sterility 103 (1): 160–62.CrossRefGoogle ScholarPubMed Scott, Cameron. 2015. The personal, painful ordeal of women with endometriosis. Healthline, June 18. http://www.healthline.com/health-news/personal-painful-ordeal-of-women-with-endometriosis-061815#2 (accessed September 24, 2015).Google Scholar Seear, Kate. 2009. The etiquette of endometriosis: Stigmatisation, menstrual concealment and the diagnostic delay. Social Science and Medicine 69 (8): 1220–27.CrossRefGoogle ScholarPubMed Shakespeare, Tom. 1999. The sexual politics of disabled masculinity. Sexuality and Disability 17 (1): 53–64.CrossRefGoogle Scholar Shohat, Ella. 1992. Lasers for ladies: Endo discourse and the inscription of science. Camera Obscura 10 (2 29): 57–89.CrossRefGoogle Scholar Siebers, Tobin. 2001. Disability in theory: From social constructionism to the new realism of the body. American Literary History 13 (4): 737–54.CrossRefGoogle Scholar Siebers, Tobin. 2008. Disability theory. Ann Arbor: University of Michigan Press.CrossRefGoogle Scholar Simoens, S., Hummelshoj, L., and D'Hooghe, T. 2007. Endometriosis: Cost estimates and methodological perspective. Human Reproduction Update 13 (4): 395–404.CrossRefGoogle ScholarPubMed Simsek, Gulcin, Bulus, Hakan, Tas, Adnan, Koklu, Seyfettin, Yilmaz, Suleyman Burhan, and Coskun, Ali. 2012. An unusual case of inguinal hernia in a male patient: Endometriosis. Gut and Liver 6 (2): 284–85.CrossRefGoogle Scholar Vidali, Amy. 2010. Out of control: The rhetoric of gastrointestinal disorders. Disability Studies Quarterly 30 (3/4). http://dsq-sds.org/article/view/1287/1313 (accessed January 11, 2016).CrossRefGoogle Scholar Wendell, Susan. 1996. The rejected body: Feminist philosophical reflections on disability. New York: Routledge.Google Scholar Wendell, Susan. 2001. Unhealthy disabled: Treating chronic illnesses as disabilities. Hypatia 16 (4): 17–33.CrossRefGoogle Scholar Wilkerson, Abby. 2011. Disability, sex radicalism, and political agency. In Feminist disability studies, ed. Hall, Kim Q.Bloomington: Indiana University Press.Google Scholar Young, R. H., and Scully, R. E. 1986. Testicular and paratesticular tumors and tumor‐like lesions of ovarian common epithelial and mullerian types. American Journal of Clinical Pathology 86 (2): 146–52.CrossRefGoogle ScholarPubMed Zamecnik, M., and Hostakova, D. 2013. Endometriosis in a mesothelial cyst of tunica vaginalis of the testes. Ceskoslovenska Patologie 49 (5): 134–36.Google Scholar - 71 - Cited by Cited by Crossref Citations Gupta, Jhumka Cardoso, Lauren F Harris, Courtney S Dance, Arielle D Seckin, Tamer Baker, Nina and Ferguson, Yvonne O 2018. How do adolescent girls and boys perceive symptoms suggestive of endometriosis among their peers? Findings from focus group discussions in New York City. BMJ Open, Vol. 8, Issue. 6, p. e020657. Przybylo, Ela and Fahs, Breanne 2020. The Palgrave Handbook of Critical Menstruation Studies. p. 375. Bergman, Mindy E. Siuta, Rose L. Liu, Sin-Ning C. and Capuchino, Briana G. 2020. Pushing our Understanding of Diversity in Organizations. p. 53. Bobel, Chris and Fahs, Breanne 2020. The Palgrave Handbook of Critical Menstruation Studies. p. 1001. Jones, Cara E. 2021. Queering gendered disabilities. Journal of Lesbian Studies, Vol. 25, Issue. 3, p. 195. Johnson, Merri Lisa 2021. Neuroqueer Feminism: Turning with Tenderness toward Borderline Personality Disorder. Signs: Journal of Women in Culture and Society, Vol. 46, Issue. 3, p. 635. Gupta, Jhumka Cardoso, Lauren Kanselaar, Samantha Scolese, Anna M. Hamidaddin, Alzahra Pollack, Anna Z. and Earnshaw, Valerie A. 2021. Life Disruptions, Symptoms Suggestive of Endometriosis, and Anticipated Stigma Among College Students in the United States. Women's Health Reports, Vol. 2, Issue. 1, p. 633. Drabble, Sarah J Long, Jaqui Alele, Blessing and O’Cathain, Alicia 2021. Constellations of pain: a qualitative study of the complexity of women’s endometriosis-related pain. British Journal of Pain, Vol. 15, Issue. 3, p. 345. Johnson, Lucy 2022. Adapt and Adjust: Doing UK-Based Ethnographic Fieldwork During the Covid-19 Pandemic. Medical Anthropology, Vol. 41, Issue. 8, p. 763. Gillberg, Claudia 2022. The Oxford Handbook of Jane Addams. p. 603. Holowka, Eileen Mary 2022. Mediating Pain: Navigating Endometriosis on Social Media. Frontiers in Pain Research, Vol. 3, Issue. , Hawkey, Alexandra Chalmers, K. Jane Micheal, Sowbhagya Diezel, Helene and Armour, Mike 2022. “A day-to-day struggle”: A comparative qualitative study on experiences of women with endometriosis and chronic pelvic pain. Feminism & Psychology, Vol. 32, Issue. 4, p. 482. Iengo, Ilenia 2022. Endometriosis and Environmental Violence. Environmental Humanities, Vol. 14, Issue. 2, p. 341. Nève, Margaux 2023. Idées reçues sur les menstruations. p. 85. 2023. Activist Affordances. p. 293. 2023. Activist Affordances. p. 191. Remnant, Jennifer Sang, Katherine Myhill, Katriona Calvard, Thomas Chowdhry, Sushila and Richards, James 2023. Working it out: Will the improved management of leaky bodies in the workplace create a dialogue between medical sociology and disability studies?. Sociology of Health & Illness, Vol. 45, Issue. 6, p. 1276. 2023. Activist Affordances. p. 87. 2023. Activist Affordances. p. 71. Lindgren, Simon and Richardson, Lorna 2023. Endometriosis pain and epistemic community: Mapping discourses in online discussions among sufferers. Social Science & Medicine, Vol. 326, Issue. , p. 115889.