Hostname: page-component-8448b6f56d-mp689 Total loading time: 0 Render date: 2024-04-23T12:33:27.156Z Has data issue: false hasContentIssue false

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

Published online by Cambridge University Press:  01 January 2020

Abstract

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
Copyright
Copyright © 2016 by Hypatia, Inc.

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

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): 13.CrossRefGoogle ScholarPubMed
Ballweg, Mary Lou. 1995. The endometriosis sourcebook. Chicago: McGraw‐Hill.Google Scholar
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): 4961.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
Kafer, Alison. 2013. Feminist, queer, crip. 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): S313.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): 6178.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): 5364.CrossRefGoogle Scholar
Shohat, Ella. 1992. Lasers for ladies: Endo discourse and the inscription of science. Camera Obscura 10 (2 29): 5789.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): 395404.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): 1733.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