Addressing Cultural Stigma: Endometriosis Diagnosis in the Arab World
Abstract
Endometriosis, a challenging chronic disease, has often been shrouded in delayed diagnosis. Efforts to enhance the quality of life for affected women by facilitating earlier diagnoses is crucial. Early diagnosis in the teenage years can impact not only the individual but also her family. In conservative cultures such as those found in the Arab world, including the Arab Peninsula, North Africa, and East Asia, reproductive capacity stands as a defining feature in a woman’s life. Endometriosis, viewed as both a stigma and a threat to reproductive capabilities, can significantly influence a girl’s marriage prospects, especially as within these cultural contexts, marriage is perceived as a protective shield, guarding against potential future hardships. The stigma associated with endometriosis intensifies the anxieties of both the affected girl and her parents about the future. This policy commentary dives into the intricacies of reproductive stigma, offering thoughtful suggestions to systematically address it on both policy and societal levels. The proposed interventions involve active engagement with adolescent girls, their families, partners, schools, healthcare institutions, specialized professionals, workplaces, and the broader communities. Comprehensively addressing these aspects can foster a supportive environment that empowers individuals to navigate the challenges posed by endometriosis in conservative cultures.
Keywords:
Endometriosis, Quality of life, Adolescence, Social Stigma, Policy
References
[1] Abd El-Kader, A. I., Gonied, A. S., Lotfy Mohamed, M., & Lotfy Mohamed, S. (2019). Impact of endometriosis-related adhesions on quality of life among infertile women. International Journal of Fertility & Sterility, 13(1), 72–76.
[2] Akouri, R., Maalouf, G., Abboud, J., Waked, A., Nakad, T., Bedran, F., Gjannam, G. A., Hajj, P., Hanafy, A., Brännström, F., Merzah, S., Gharhemani, M., Dahm- Kähler, P., & Brännström, M. (2017). Uterus transplantation: An update and the Middle East perspective. Middle East Fertility Society Journal, 22(3), 163–169. https://doi.org/10.1016/j.mefs.2017.04.003
[3] Al Shukri, M., Al Riyami, A. S., Al Ghafri, W., & Gowri, V. (2022). Based on clinical profile: Are there predictors of earlier diagnosis of endometriosis? A retrospective study in Oman. Oman Medical Journal, 38(1), e458. Advance online publication. https://doi.org/10.5001/omj.2023.35
[4] Al Shukri, M., Al Riyami, A. S., Al Ghafri, W., & Gowri, V. (2023). Are there predictors of early diagnosis of endometriosis based on clinical profile? A retrospective study. Oman Medical Journal, 38(1), e458. Advance online publication. https://doi.org/10.5001/omj.2023.35
[5] Ballard, K., Lowton, K., & Wright, J. (2006). What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertility and Sterility, 86(5), 1296–1301. https://doi.org/10.1016/j.fertnstert.2006.04.054
[6] Bourdel, N., Chauvet, P., Billone, V., Douridas, G., Fauconnier, A., Gerbaud, L., & Canis, M. (2019). Systematic review of quality of life measures in patients with endometriosis. PLoS One, 14(1), e0208464. https://doi.org/10.1371/journal.pone.0208464
[7] Cambridge Dictionary. (n.d.). “Stigma| English meaning - Cambridge Dictionary.” https://dictionary.cambridge.org/dictionary/english/stigma (accessed Apr. 14, 2023).
[8] Cleveland Clinic. Premenstrual syndrome. [Online]. Available from: https://my.clevelandclinic.org/health/diseases/24288-pms-premenstrual-syndrome
[9] Culley, L., Law, C., Hudson, N., Denny, E., Mitchell, H., Baumgarten, M., & Raine- Fenning, N. (2013). The social and psychological impact of endometriosis on women’s lives: A critical narrative review. Human Reproduction Update, 19(6), 625–639. https://doi.org/10.1093/humupd/dmt027
[10] Freeman, E. W., Sammel, M. D., Lin, H., Boorman, D. W., & Gracia, C. R. (2012). Contribution of the rate of change of Anti-müllerian hormone in estimating time to menopause for late reproductive-age women. Fertility and Sterility, 98(5), 1254–9.e1, 2. Advance online publication. https://doi.org/10.1016/j.fertnstert.2012.07.1139
[11] Hall, K. S., Morhe, E., Manu, A., Harris, L. H., Ela, E., Loll, D., Kolenic, G., Dozier, J. L., Challa, S., Zochowski, M. K., Boakye, A., Adanu, R., & Dalton, V. K. (2018). Factors associated with sexual and reproductive health stigma among adolescent girls in Ghana. PLoS One, 13(4), e0195163. Advance online publication. https://doi.org/10.1371/journal.pone.0195163
[12] Hatzenbuehler, M. L., Phelan, J. C., & Link, B. G. (2013). Stigma as a fundamental cause of population health inequalities. American Journal of Public Health, 103, 813–821. https://doi.org/10.2105/AJPH.2012.301069
[13] Hudelist, G., Fritzer, N., Thomas, A., Niehues, C., Oppelt, P., Haas, D., Tammaa, A., & Salzer, H. (2012). Diagnostic delay for endometriosis in Austria and Germany:Causes and possible consequences. Human Reproduction, 27(12), 3412–3416. https://doi.org/10.1093/humrep/des316
[14] Hufnagel, G. L. (2012). A history of women’s menstruation from ancient Greece to the twenty-first century: Psychological, social, medical, religious, and educational issues (1st ed.).
[15] Jenneh Rishe, R., Cadman, B, & Barrell, A. Bladder endometriosis: Symptoms, diagnosis, and treatment. MedicalNewsToday. Available from: https://www.medicalnewstoday.com/articles/321439#other-bladder-pain
[16] Laganà, A. S., La Rosa, V. L., Rapisarda, A. M. C., Valenti, G., Sapia, F., Chiofalo, B., Rossetti, D., Ban Frangež, H., Vrtacnik Bokal, E., & Vitale, S. G. (2017). Anxiety and depression in patients with endometriosis: Impact and management challenges. International Journal of Women’s Health, 9, 323–330. https://doi.org/10.2147/IJWH.S119729
[17] Latremoliere, A., & Woolf, C. J. (2009). Central sensitization: A generator of pain hypersensitivity by central neural plasticity. The Journal of Pain, 10(9), 895–926. https://doi.org/10.1016/j.jpain.2009.06.012
[18] Li, J., Liu, R., Tang, S., Feng, F., Liu, C., Wang, L., Zhao, W., Zhang, T., Yao, Y., Wang, X., & Sun, C. (2019). Impact of endometriosis on risk of ovarian, endometrial and cervical cancers: a meta-analysis. Archives of Gynecology and Obstetrics, 299(1), 35–46. https://doi.org/10.1007/s00404-018-4968-1
[19] Moawad, N. S., & Caplin, A. (2013). Diagnosis, management, and long-term outcomes of rectovaginal endometriosis. International Journal of Women’s Health, 5(1), 753– 763. https://doi.org/10.2147/IJWH.S37846
[20] Mousa, M., Al-Jefout, M., Alsafar, H., Becker, C. M., Zondervan, K. T., & Rahmioglu, N. (2021). Impact of endometriosis in women of arab ancestry on: Health-related quality of life, work productivity, and diagnostic delay. Frontiers in Global Women’s Health, 2, 708410. https://doi.org/10.3389/fgwh.2021.708410
[21] Nouri, K., Ott, J., Krupitz, B., Huber, J. C., & Wenzl, R. (2010). Family incidence of endometriosis in first-, second-, and third-degree relatives: Case-control study. Reproductive Biology and Endocrinology, 8, 85. Advance online publication. https://doi.org/10.1186/1477-7827-8-85
[22] Ragab, A., Shams, M., Badawy, A., & Alkhatim Alsammani, M. (2015). Prevalence of endometriosis among adolescent school girls with severe dysmenorrhea: A crosssectional prospective study. International Journal of Health Sciences, 9(3), 273–81. https://doi.org/10.12816/0024694
[23] Roberts, C. P., & Rock, J. A. (2003). The current staging system for endometriosis: Does it help? Obstetrics and Gynecology Clinics of North America, 30(1), 115–132. https://doi.org/10.1016/S0889-8545(02)00056-6
[24] Romanski, P. A., Brady, P. C., Farland, L. V., Thomas, A. M., & Hornstein, M. D. (2019). The effect of endometriosis on the Anti-müllerian hormone level in the infertile population. Journal of Assisted Reproduction and Genetics, 36(6), 1179– 1184. https://doi.org/10.1007/s10815-019-01450-9
[25] Sims, O. T., Gupta, J., Missmer, S. A., & Aninye, I. O. (2021, August). Stigma and endometriosis: A brief overview and recommendations to improve psychosocial well-being and diagnostic delay. International Journal of Environmental Research and Public Health, 18(15), 8210. Advance online publication. https://doi.org/10.3390/ijerph18158210
[26] Surrey, E., Soliman, A. M., Trenz, H., Blauer-Peterson, C., & Sluis, A. (2020). Impact of endometriosis diagnostic delays on healthcare resource utilization and costs. Advances in Therapy, 37(3), 1087–1099. https://doi.org/10.1007/s12325-019-01215-x
[27] Uimari, O., Järvelä, I., & Ryynänen, M. (2011). Do symptomatic endometriosis and uterine fibroids appear together? Journal of Human Reproductive Sciences, 4(1), 34–38. https://doi.org/10.4103/0974-1208.82358