Exercising Agency: Women, Endometriosis and the Navigation of Sexual Relationships

Roughly 160 million women live with endometriosis, a chronic disease involving the uterine lining shedding on the outside of the uterus causing immense physical and emotional pain. One common symptom of endometriosis is dyspareunia, or pain associated with sexual intercourse. With traditional sexual script theory and sexual script theory serving as theoretical frameworks and interpretive lenses, the study examines how traditional gender norms might influence women’s prioritization of their own health needs as well as the physical, emotional, and relational health outcomes of such prioritization. Engaging a mixed methods’ approach involving directed content analysis, grounded theory and statistical analyses, ninety posts from Reddit were coded and examined to identify the relationship between the script types (self, partner, or relationship) and the valence of physical, emotional, and relational health outcomes. Results indicate a significant prioritization of the self script and personal agency. Additionally, the relationship among the prioritized script (self, partner, or relationship) and the positive and negative outcomes as related to physical, emotional, and relational health is nonsignificant. Nevertheless, the results highlight the physical, emotional and relational barriers women face in their sexual health. Discussion, implications, and directions for future research follow as related to women, chronic illness and health. Similar content being viewed by others

Ammari, T., Schoenebeck, S., & Romero, D. (2019). Self-declared throwaway accounts on Reddit: How platform affordances and shared norms enable parenting disclosure and support. In: Proceedings of the ACM on Human-Computer Interaction, (CSCW), https://doi.org/10.1145/3359237 Andalibi, N., & Forte, A. (2018). Announcing pregnancy loss on Facebook: A decision-making framework for stigmatized disclosures on identified social network sites. In: Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems (pp 1–14). https://doi.org/10.1145/3173574.3173732 Armstrong, E. A., England, P., & Fogarty, A. C. (2012). Accounting for women’s orgasm and sexual enjoyment in college hookups and relationships. American Sociological Review, 77(3), 435–462. https://doi.org/10.1177/0003122412445802 Bair, M. J., Robinson, R. L., Katon, W., & Kroenke, K. (2003). Depression and pain comorbidity: A literature review. Archives of Internal Medicine, 163(20), 2433–2445. https://doi.org/10.1001/archinte.163.20.2433 Barbara, G., Facchin, F., Meschia, M., Berlanda, N., Frattaruolo, M. P., & Vercellini, P. (2017). When love hurts: A systematic review on the effects of surgical and pharmacological treatments for endometriosis on female sexual functioning. Acta Obstetricia Et Gynecologica Scandinavica, 96(6), 668–687. https://doi.org/10.1111/aogs.13031 Baxter, L. A., & Wilmot, W. W. (1985). Taboo topics in close relationships. Journal of Social and Personal Relationships, 2(3), 253–269. https://doi.org/10.1177/0265407585023002 Becker, C. M., Missmer, S. A., & Zondervan, K. T. (2020). Endometriosis. New England Journal of Medicine, 382(1), 1244–1256. https://doi.org/10.1056/NEJMra1810764 Blair, K. L., Cappell, J., & Pukall, C. F. (2018). Not all orgasms were created equal: Differences in frequency and satisfaction of orgasm experiences by sexual activity in same-sex versus mixed-sex relationships. The Journal of Sex Research, 55(6), 719–733. https://doi.org/10.1080/00224499.2017.1303437 Byers, E. S. (1996). How well does the traditional sexual script explain sexual coercion? Journal of Psychology & Human Sexuality, 8, 7–25. https://doi.org/10.1300/J056v08n01_02 Byers, E. S., & O’Sullivan, L. F. (2013). Sexual Coercion in Dating Relationships. Routledge. Cea Soriano, L., López-Garcia, E., Schulze-Rath, R., & Garcia Rodríguez, L. A. (2017). Incidence, treatment, and recurrence of endometriosis in a UK-based population analysis using data from The Health Improvement Network and the Hospital Episode Statistics database. The European Journal of Contraception Reproductive Health Care, 22(5), 334–343. https://doi.org/10.1080/13625187.2017.1374362 Chauhan, S., More, A., Chauhan, V., & Kathane, A. (2022). Endometriosis: A review of clinical diagnosis, treatment, and pathogenes. Cureus. https://doi.org/10.7759/cureus.28864 Cole, J. M., Grogan, S., & Turley, E. (2021). “The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity. Feminism & Psychology, 31(2), 171–191. https://doi.org/10.1177/0959353520930602 Cupach, W. R., Canary, D. J., & Spitzberg, B. H. (2010). Competence in interpersonal conflict (2nd edn). Waveland Press, Inc. Daniel, H., Erickson, S. M., & Borenstein, S. S. (2018). Women’s health policy in the United States: An American college of Physicians position paper. Annals of Internal Medicine. https://doi.org/10.7326/M17-3344 Denny, E., & Mann, C. H. (2007). Endometriosis-associated dyspareunia: The impact on women’s lives. BMJ Sexual & Reproductive Health, 33(3), 189–193. https://doi.org/10.1783/147118907781004831 Dworkin, S. L., & O’Sullivan, L. (2005). Actual versus desired initiation patterns among a sample of college men: Tapping disjuncture’s within traditional male sexual scripts. Journal of Sex Research, 42(2), 150–158. https://doi.org/10.1080/00224490509552268 Emmers-Sommer, T. M., & Allen, M. (2005). Safer sex in personal relationships: The role of sexual scripts in HIV infection and prevention. Lawrence Erlbaum Associates. Emmers-Sommer, T. M. (2022). Pleasure privilege in mediated and relational contexts: Sexuality and gender. Sex Education. https://doi.org/10.1080/14681811.2022.2061439 Emmers-Sommer, T. M., Farrell, J., Gentry, A., Stevens, S., Eckstein, J., Battocletti, J., & Gardener, C. (2010). First date sexual expectations: The effects of who asked, who paid, date location, and gender. Communication Studies, 61(3), 339–355. https://doi.org/10.1080/10510971003752676 Facchin, F., Buggio, L., Vercellini, P., Frassineti, A., Beltrami, S., & Saita, E. (2021). Quality of intimate relationships, dyadic coping, and psychological health in women with endometriosis: Results from an online survey. Journal of Psychosomatic Research. https://doi.org/10.1016/j.jpsychores.2021.110502 Fernandez, I., Reid, C., & Dziurawiec, S. (2006). Living with endometriosis: The perspective of male partners. Journal of Psychosomatic Research, 61(4), 433–438. https://doi.org/10.1016/j.jpsychores.2006.06.003 Fernley, N. (2021). That one doctor qualitative thematic analysis of 49 women’s written accounts of their endometriosis diagnosis. Journal of Endometriosis and Pelvic Pain Disorders, 13(1), 40–52. https://doi.org/10.1177/2284026520984366 Gagnon, J. H. (1990). The explicit and implicit use of the scripting perspective in sex research. Annual Review of Sex Research, 1(1), 1–43. https://doi.org/10.1080/10532528.1990.10559854 Hawkey, A., Chalmers, K. J., Micheal, S., Diezel, H., & Armour, M. (2022). “A day-to-day struggle”: A comparative qualitative study on experiences of women with endometriosis and chronic pelvic pain. Feminism & Psychology, 32, 482–500. https://doi.org/10.1177/09593535221083846 Herbenick, D., Schick, V., Sanders, S. A., Reece, M., & Fortenberry, J. D. (2015). Pain experienced during vaginal and anal intercourse with other-sex partners: Findings from a nationally representative probability study in the United States. The Journal of Sexual Medicine, 12(4), 1040–1051. https://doi.org/10.1111/jsm.12841 Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.org/10.1177/1049732305276687 Katz Institute for Women’s Health (n.d.). Gaslighting and women’s health: No, it’s not just in your head. https://www.northwell.edu/katz-institute-for-womens-health/articles/gaslighting-in-womens-health Kralik, D., Koch, T., & Telford, K. (2001). Constructions of sexuality for midlife women living with chronic illness. Journal of Advanced Nursing, 35(2), 180–187. https://doi.org/10.1046/j.1365-2648.2001.01835.x Lawler, J. (2006). Behind the Screens: Nursing, Somology, and the Problem of the Body. Sydney University Press. Loofbourow, L. (2018). The female price of male pleasure. The Week. https://theweek.com/articles/749978/female-price-male-pleasure Mahar, E. A., Mintz, L. B., & Akers, B. M. (2020). Orgasm equality: Scientific findings and societal implications. Current Sexual Health Reports, 12(1), 24–32. https://doi.org/10.1007/s11930-020-00237-9 Malis, R., & Roloff, M. (2006). Demand/withdraw patterns in serial arguments: Implications for well-being. Human Communication Research, 32(1), 198–216. https://doi.org/10.1111/j.1468-2958.2006.00009.x Manning, J., & Kunkel, A. (2014). Making meaning of meaning-making research: Using qualitative research for studies of social and personal relationships. Journal of Social and Personal Relationships, 31(4), 433–441. https://doi.org/10.1177/0265407514525890 Marshall, E. A., Miller, H. A., & Bouffard, J. A. (2021). Bridging the theoretical gap: Using sexual script theory to explain the relationship between pornography use and sexual coercion. Journal of Interpersonal Violence. https://doi.org/10.1177/0886260518795170 McClelland, S. I. (2010). Intimate justice: A critical analysis of sexual satisfaction. Social and Personality Psychology Compass, 4(9), 663–680. https://doi.org/10.1111/j.1751-9004.2010.00293.x Meana, M., & Lykins, A. (2009). Negative affect and somatically focused anxiety in young women reporting pain with intercourse. Journal of Sex Research, 46(1), 80–88. https://doi.org/10.1080/00224490802624422 Metts, S., & Spitzberg, B. H. (1996). Sexual communication in interpersonal contexts: A script-based approach. Annals of the International Communication Association, 19(1), 49–92. https://doi.org/10.1080/23808985.1996.11678928 Moradi, M., Parker, M., Sneddon, A., Lopez, V., & Ellwood, D. (2014). Impact of endometriosis on women’s lives: A qualitative study. BMC Women’s Health, 14(1), 1–12. https://doi.org/10.1186/1472-6874-14-123 Namazi, M., Behboodi Moghadam, Z., Zareiyan, A., & Jafarabadi, M. (2020). Exploring the impact of endometriosis on women’s lives: A qualitative study in Iran. Nursing Open, 8(3), 1275–1283. https://doi.org/10.1002/nop2.744 Parker, K., Horowitz, J. M., & Stepler, R. (2017). On Gender Differences, no Consensus on Nature vs. Nurture. Pew Research Center. https://www.pewresearch.org/social-trends/2017/12/05/on-gender-differences-no-consensus-on-nature-vs-nurture/ Petrozza, J. (2021). Endometriosis and its Impact on Infertility. Massachusetts General Hospital Fertility Center. Available https://www.massgeneral.org/obgyn/fertility/news/endometriosis-and-its-impact-on-fertility Rehman, U. S., Balan, D., Sutherland, S., & McNeil, J. (2019). Understanding barriers to sexual communication. Journal of Social and Personal Relationships, 36, 2605–2623. https://doi.org/10.1177/0265407518794900 Rehman, U. S., Lizdek, I., Fallis, E. E., Sutherland, S., & Goodnight, J. A. (2017). How is sexual communication different from nonsexual communication? A moment-by-moment analysis of discussions between romantic partners. Archives of Sexual Behavior, 46(8), 2339–2352. https://doi.org/10.1007/s10508-017-1006-5 Rush, G., Misajon, R., Hunter, J. A., Gardner, J., & O’Brien, K. S. (2019). The relationship between endometriosis-related pelvic pain and symptom frequency, and subjective wellbeing. Health and Quality of Life Outcomes, 17(1), 1–5. https://doi.org/10.1186/s12955-019-1185-y Schlesinger, L. (1996). Chronic pain, intimacy, and sexuality: A qualitative study of women who live with pain. Journal of Sex Research, 33(3), 249–256. https://doi.org/10.1080/00224499609551841 Schmidt, A. M., & DeShon, R. P. (2007). What to do? The effects of discrepancies, incentives, and time on dynamic goal prioritization. Journal of Applied Psychology, 92(4), 928. https://doi.org/10.1037/0021-9010.92.4.928 Schultz, W. W., Basson, R., Binik, Y., Eschenbach, D., Wesselmann, U., & Van Lankveld, J. (2005). Women’s sexual pain and its management. The Journal of Sexual Medicine, 2(3), 301–316. https://doi.org/10.1111/j.1743-6109.2005.20347.x Shpigelman, C. N., Roe, D., Konopny-Decleve, L., & Eldan, K. (2019). Disclosing mental illness during dating: An interpretative phenomenological analysis of the partners’ experience. International Journal of Mental Health and Addiction, 17, 1312–1327. https://doi.org/10.1007/s11469-018-0046-y Simon, W., & Gagnon, J. H. (1984). Sexual Scripts. Society, 22(1), 53–60. https://doi.org/10.1007/BF02701260 Simon, W., & Gagnon, J. H. (1986). Sexual scripts: Permanence and change. Archives of Sexual Behavior, 15(2), 97–120. https://doi.org/10.1007/BF01542219 Simon, W., & Gagnon, J. (1998). Psychosexual Development. Society, 35(2), 60–67. https://doi.org/10.1007/BF02838129 Sormanti, M. (2010). Facilitating women’s development through the illness of cancer: Depression, self-silencing, and self-care. In D. C. Jack & A. Ali (Eds.), Silencing the Self Across Cultures: Depression and Gender in the Social World (pp. 363–380). Oxford University Press. https://doi.org/10.1093/acprof:oso/9780195398090.003.0018 Sowles, S. J., McLeary, M., Optican, A., Cahn, E., Krauss, M. J., Fitzsimmons-Craft, E. E., & Cavazos-Rehg, P. A. (2018). A content analysis of an online pro-eating disorder community on Reddit. Body Image, 24(1), 137–144. https://doi.org/10.1016/j.bodyim.2018.01.001 Suri, H. (2011). Purposeful sampling in qualitative research synthesis. Qualitative Research Journal, 11(2), 163–175. https://doi.org/10.3316/QRJ1102063 Szendei, G., Hernádi, Z., Dévényi, N., & Csapó, Z. (2005). Is there any correlation between stages of endometriosis and severity of chronic pelvic pain? Possibilities of Treatment. Gynecological Endocrinology, 21(2), 93–100. https://doi.org/10.1080/09513590500107660 Thomtén, J., & Linton, S. J. (2013). A psychological view of sexual pain among women: Applying the fear-avoidance model. Women’s Health, 9(3), 251–263. https://doi.org/10.2217/WHE.13.19 Umphrey, L. R., & Sherblom, J. C. (2001). The role of relational interdependence, relationship thinking, and relational communication in three stages of romantic relationships. Communication Research Reports, 18(4), 324–333. https://doi.org/10.1080/08824090109384813 Van Teijlingen, E., Reid, J., Shucksmith, J., Harris, F., Phillip, K., Imamura, M., Tucker, J., & Penney, G. (2017). Embarrassment as a key emotion in young people talking about sexual health. Sociological Research Online, 12, 1–16. https://doi.org/10.5153/sro.1535 Vercellini, P., Crosignani, P. G., Abbiati, A., Somigliana, E., Vigano, P., & Fedele, L. (2009). The effect of surgery for symptomatic endometriosis: The other side of the story. Human Reproduction Update, 15(2), 177–188. https://doi.org/10.1093/humupd/dmn062 Wahl, K. J., Imtiaz, S., Lisonek, M., Joseph, K. S., Smith, K. B., Yong, P. J., & Cox, S. M. (2021). Dyspareunia in their own words: A qualitative description of endometriosis-associated sexual pain. Sexual Medicine, 9(1), 100274. https://doi.org/10.1016/j.esxm.2020.10.002 Walker, D., & Myrick, F. (2006). Grounded theory: An exploration of process and procedure. Qualitative Health Research, 16(4), 547–559. https://doi.org/10.1177/1049732305285972 Wiederman, M. W. (2005). The gendered nature of sexual scripts. The Family Journal, 13(4), 496–502. https://doi.org/10.1177/1066480705278729 World Health Organization. (2006a). Sexual and Reproductive Health and Research (SRH). Available https://www.who.int/teams/sexual-and-reproductive-health-and-research-(srh)/areas-of-work/sexual-health Youseflu, S., Jahanian Sadatmahalleh, S., Bahri Khomami, M., & Nasiri, M. (2020). Influential factors on sexual function in infertile women with endometriosis: A path analysis. BMC Women’s Health, 20(1), 1–7. https://doi.org/10.1186/s12905-020-00941-7 Funding The authors did not receive any funding. Author information Authors and Affiliations Corresponding author Ethics declarations Conflict of interest The authors report no known conflict of interest. Additional information Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Rights and permissions Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law. About this article Cite this article Wiese, M., Emmers-Sommer, T. Exercising Agency: Women, Endometriosis and the Navigation of Sexual Relationships. Sexuality & Culture 28, 1108–1132 (2024). https://doi.org/10.1007/s12119-023-10169-w Accepted: Published: Version of record: Issue date: DOI: https://doi.org/10.1007/s12119-023-10169-w