High frequency of symptoms suggestive of endometriosis in a clinic-based sample of low-income women in Mexico City

Endometriosis affects an estimated 10 percent of women and girls globally, yet little is known about symptoms and awareness among women in low- and middle-income countries. This commentary presents a descriptive secondary analysis of baseline data from a clinic-based intervention study with low-income women in Mexico City who experienced intimate partner violence in the past year(N = 754). The secondary analysis examined symptoms that may be suggestive of endometriosis as well as endometriosis awareness. Over half of participants reported at least one symptom suggestive of endometriosis (59.3 percent), while 12.5 percent of those reporting a symptom had ever heard of the disease. Pain-related symptoms were classified as pain with menses disrupting household chores, pain with menses disrupting work or social gatherings, and/or pelvic pain outside of menses disrupting daily activities. Fewer women who reported pain-related symptoms had heard of the disease compared to those who reported a history of infertility (11.4 vs. 15.7 percent, respectively).This study documents levels of awareness of endometriosis among women in Mexico City and underscores the importance of integrating endometriosis education into broader global reproductive health agendas.

endometriosis, reproductive health, menstrual health Endometriosis is a chronic gynecologic condition affecting up to 10 percent of women and girls worldwide (Rogers et al., 2009). Endometriosis often presents with painful and debilitating symptoms, including pain during and outside of menses, dyspareunia, abdominal and back pain, and nerve pain. Diagnostic delays range from 3.3 to 10.7 years (Simoens, Hummelshoj, & D’Hooghe, 2007).Compared to other chronic and reproductive health issues, endometriosis research is lacking, despite its prevalence and public health burden (Gao et al.,2006). Even less is known about the impacts of endometriosis in low- and middle-income countries (LMICs). Existing research within LMICs on endometriosis primarily focuses on assisted reproductive technology or surgical outcomes among diagnosed women. In Mexico and other LMICs, endometriosis and menstrual health are not major focus areas within the public health sphere. To date, only one multi-country study including LMICs has documented that 25percent of women’s work per week was lost due to endometriosis (Nnoahamet al., 2011). Sparse data on symptoms and awareness among general, clinic-based samples stymies the public health field’s ability to fully understand the impact of endometriosis symptoms and design effective interventions for both raising awareness and treatment of the symptoms. Secondary data from a randomized controlled trial taking place between April and October 2013 with 42 community health clinics serving low-income women in Mexico City regarding violence prevention provided a unique opportunity to examine (i) symptoms that may be suggestive of endometriosis and (ii) endometriosis awareness. Participants were ages 18–44 (N=754; mean age 30.2), who completed two waves of surveys administered by trained research assistants. All participants had previously experienced intimate partner violence(Gupta et al., 2017). These community health clinics serve patients who are recipients of Seguro Popular, Mexico’s most comprehensive national health insurance reaching underserved populations. The survey included questions about symptoms suggestive of endometriosis, including three pain-related indicators and infertility history, as well as an item on whether or not the participant had ever heard of endometriosis (i.e., endometriosis awareness). Pain-related symptoms were classified as pain with menses disrupting household chores, pain with menses disrupting work or social gatherings, and/or pelvic pain outside of menses disrupting daily activities. Infertility history was classified as whether or not the individual had ever had difficulty becoming pregnant and if this happened for more than a year. The following institutions approved the study protocols: Yale School of Public Health, George Mason University, Innovations for Poverty Action, and Mexico City Ministry of Health. All participants provided informed consent prior to participating. Over half of participants (59.3 percent) reported at least one symptom suggestive of endometriosis, of whom only 12.5 percent had heard of the disease. Notably, though pain was more frequently reported than infertility history (42.9vs. 6.7 percent), a greater proportion of those reporting infertility history had heard of endometriosis (15.7 vs. 11.4 percent). Findings also underscored the high levels of women reporting ever experiencing pain-related disruptions in carrying out their household chores and caregiving (n = 289; 38.3 percent), and work and social life (n = 191, 25.3 percent). Please see Table 1 for details. Table 1. | Reason for Clinic Visit | ||||||| |---|---|---|---|---|---|---|---| | Symptoms suggestive of endometriosis | Total | Ever Heard of Endometriosis | Gynecology Visit | Children’s Appointment (Including immunization) | General appointment/Medical Exams | Family Planning | Insurance/Other | | Total sample | 754 (100.0) | 97 (12.9) | 53 (7.0) | 264 (35.0) | 288 (38.2) | 10 (1.3) | 139 (18.4) | | Pain Symptoms or History of Infertility | 447 (59.28) | 56 (12.5) | 27 (6.0) | 150 (33.6) | 180 (40.3) | 8 (1.8) | 82 (18.3) | | Pain Symptoms and History of Infertilitya,b | 72 (9.5) | 11 (15.2) | 8 (11.1) | 19 (26.4) | 29 (4.03) | 1 (1.4) | 15 (20.8) | | Infertility history | 51 (6.7) | 8 (15.7) | 4 (7.8) | 12 (23.5) | 19 (37.3) | 1 (1.9) | 15 (29.4) | | Pain onlyc | 324 (42.9) | 37 (11.4) | 15 (4.6) | 119 (36.7) | 132 (40.7) | 6 (1.8) | 52 (16.1) | | Pain-related symptoms of endometriosis | ||||||| | All pain symptoms | 101 (13.4) | 13 (12.8) | 4 (3.9) | 28 (27.7) | 48 (47.5) | 0 (0) | 21 (20.8) | | Any pain symptoms | 396 (52.5) | 48 (12.1) | 23 (5.8) | 138 (34.9) | 161 (40.7) | 7 (1.8) | 67 (16.9) | | Pain with menses disrupted household choresd | 289 (38.3) | 37 (12.8) | 16 (5.5) | 96 (33.2) | 129 (44.6) | 3 (1.0) | 45 (15.6) | | Pain with menses disrupted work or social gatheringse | 191 (25.3) | 24 (12.6) | 10 (5.24) | 59 (30.9) | 83 (43.5) | 3 (1.6) | 36 (18.9) | | Pelvic pain outside of menses disrupted daily activitiesf | 251 (33.3) | 30 (11.9) | 14 (5.6) | 83 (33.1) | 103 (41.0) | 3 (1.2) | 48 (19.1) | Responded “yes” to both of the following: (i) Have you ever tried to become pregnant but were unable to?; and (ii) Did this last for more than 1 year?Participants responded to survey questions asking if they had ever experienced the following in the last year No pain symptoms. No history of infertility. Experienced so much pain around your periods that you are unable to carry out your household duties (such as cooking, taking care of children, etc. Experienced so much pain around your periods that you are unable to attend work, family gatherings, or any other place you needed to go? Experienced recurring pelvic pain (pain in your lower belly) any time during the month when you do NOT have your period, which prevents you from participating in daily activities? These preliminary findings underscore the high levels of symptoms suggestive of endometriosis reported in a clinic-based sample of low-income women in Mexico City. Moreover, current findings are consistent with existing research predominantly from higher income settings that has linked endometriosis symptoms to social, economic, and family-related disruptions in women’s lives (Nnoaham et al., 2011).The current study documents, for the first time, the levels of awareness of endometriosis among women in Mexico City. This finding also echoes studies from other low-income and higher-income settings that show low levels of awareness of endometriosis among the public (Fourquet et al., 2010; Nnoaham et al., 2011) Though preliminary and limited by lack of surgical confirmation, these findings highlight the need for programming to increase awareness about endometriosis symptoms and reduce pain-related social and economic disruptions. The high levels of pain-related disruptions and infertility history coupled with low levels of knowledge about endometriosis and interaction with multiple medical disciplines in this clinic-based sample indicates the importance of integrating endometriosis education and outreach within community health settings. Future research should examine endometriosis awareness, symptoms, and disruptions in non-clinic samples to understand the experience of endometriosis more broadly. Given the prevalence and potential socio-economic burden of endometriosis in this low-income population of Mexican women, there is a need to integrate this issue into national and global reproductive health agendas. Contributor Information Courtney Harris, Department of Global and Community Health, College of Health and Human Services, George Mason University, 4400 University Drive, Fairfax, VA, 22030, United States of America. Tiara C. Willie, Department of Chronic Disease Epidemiology and Center for Interdisciplinary Research on AIDS, Yale School of Public Health, New Haven, CT, United States of America Lauren F. Cardoso, School of Social Policy and Practice, University of Pennsylvania, Philadelphia, PA, United States of America Paola A. Campos Rivera, Innovations for Poverty Action, New Haven, CT, United States of America, and Harvard T. H. Chan School of Public Health, Boston, MA Claudia Diaz Olavarrieta, Population Council, Washington, DC, United States of America. Anna Z. Pollack, Department of Global and Community Health, College of Health and Human Services, George Mason University, Fairfax, VA, United States of America. Jhumka Gupta, Department of Global and Community Health, College of Health and Human Services, George Mason University, Fairfax, VA, United States of America.

- Fourquet Jessica, Gao Xin, Zavala Diego, Orengo Juan C., Abac Sonia, Ruiz Abigail, Laboy Joaquıń, and Flores Idhaliz. 2010. “Patients’ Report on How Endometriosis Affects Health, Work, and Daily Life.” Fertility and Sterility 93 (7): 2424–28. [DOI] [PMC free article] [PubMed] [Google Scholar] - Gao Xin, Yeh Yu-Chen, Outley Jackie, Simon James, Botteman Marc, and Spalding James. 2006. “Health-Related Quality of Life Burden of Women With Endometriosis: A Literature Review.” Current Medical Research and Opinion; Newbury 22 (9): 1787–97. [DOI] [PubMed] [Google Scholar] - Gupta Jhumka, Falb Kathryn, Ponta Oriana, Xuan Ziming, Campos Paola Abril, Gomez Annabel A., Valades Jimena, Carino Gisele, and Diaz Olavarrieta Claudia. 2017. ~ . “A Nurse-Delivered, Clinic-Based Intervention to Address Intimate Partner Violence Among Low-Income Women in Mexico City: Findings From a Cluster Randomized Controlled Trial.” BMC Medicine 15 (1): 128. [DOI] [PMC free article] [PubMed] [Google Scholar] - Nnoaham Kelechi E., Hummelshoj Lone, Webster Premila, d’Hooghe Thomas, de Cicco Nardone Fiorenzo, de Cicco Nardone Carlo, Jenkinson Crispin, Kennedy Stephen H., and Zondervan Krina T.. 2011. “Impact of Endometriosis on Quality of Life and Work Productivity: A Multicenter Study across Ten Countries.” Fertility and Sterility 96 (2): 366–73. [DOI] [PMC free article] [PubMed] [Google Scholar] - Rogers Peter A. W., D’Hooghe Thomas M., Fazleabas Asgerally, Gargett Caroline E., Giudice Linda C., Montgomery Grant W., Rombauts Luk, Salamonsen Lois A., and Zondervan Krina T.. 2009. “Priorities for Endometriosis Research: Recommendations From an International Consensus Workshop.” Reproductive Sciences 16 (4): 335–46. [DOI] [PMC free article] [PubMed] [Google Scholar] - Simoens Steven, Hummelshoj Lone, and D’Hooghe Thomas. 2007. “Endometriosis: Cost Estimates and Methodological Perspective.” Human Reproduction Update 13 (4): 395–404. [DOI] [PubMed] [Google Scholar]