Stigma and social support and their impact on quality of life and self-esteem among women with endometriosis in Latin-America and the Caribbean.

Endometriosis is a complex disease affecting approximately 5-10% individuals worldwide. Prevalence rates in Latin-America and the Caribbean are largely unknown, with published data only from Puerto Rico and Chile. Pain associated with endometriosis negatively affects patients' health and quality of life. However, there is a need to better understand the role played by psychosocial variables such as stigma and social support in diverse cultural contexts. The purpose of this study was to examine the mediating role of endometriosis related stigma (endo-stigma) and the moderating role of social support on the endometriosis QoL and self-esteem among women with endometriosis from Latin America and the Caribbean. A cross-sectional design with online survey techniques was implemented. A total of 169 self-identified cisgender women with endometriosis from 14 Latin-American and Caribbean countries participated in the study. We used partial least squares structural equation modeling (PLS-SEM) to examine the study's hypotheses. Incapacitating pain was positively and significantly related to endometriosis QoL as measured by the EHP-5 (b = .266, p < .01). Endo-stigma was positively and significantly related to endometriosis QoL (b = .340, p< .01) and self-esteem (b = .297, p< .01). In addition, endo-stigma mediated the relationship between incapacitating pain and self-esteem (IE = .073, p = .018). Finally, social support moderated the relationship between stigma stress and endometriosis QoL (b = .060, p = .039). Findings suggest stigma could be one of the mechanisms through which the relationship between incapacitating pain and self-esteem among Latin American and Caribbean women with endometriosis could be partially explained. Furthermore, women who scored high in the need for social support and stigma stress also showed worst endometriosis QoL. These results point towards the need to develop tailored interventions targeting these factors in order to foster a better QoL and wellbeing for this population in the context of Latin America and the Caribbean.

Impact of Endometriosis on Life-Course Potential: A Narrative Review.

Endometriosis may exert a profound negative influence on the lives of individuals with the disorder, adversely affecting quality of life, participation in daily and social activities, physical and sexual functioning, relationships, educational and work productivity, mental health, and well-being. Over the course of a lifetime, these daily challenges may translate into limitations in achieving life goals such as pursuing or completing educational opportunities; making career choices or advancing in a chosen career; forming stable, fulfilling relationships; or starting a family, all of which ultimately alter one's life trajectory. The potential for endometriosis to impact the life course is considerable, as symptom onset generally occurs at a time of life (menarche through menopause, adolescence through middle age) when multiple life-changing and trajectory-defining decisions are made. Using a life-course approach, we examine how the known effects of endometriosis on life-domain satisfaction may impact health and well-being across the life course of affected individuals. We provide a quasi-systematic, narrative review of the literature as well as expert opinion on recommendations for clinical management and future research directions.

"Es que tú eres una changa": stigma experiences among Latina women living with endometriosis.

INTRODUCTION: Endometriosis is a chronic inflammatory gynecologic disease affecting 5-10% of women of reproductive age of all ethnicities. Symptoms of this painful condition impact the physical, mental health, and quality of life of patients. Stigma is a social determinant of health documented to negatively impact people living with chronic conditions and have been associated with social exclusion, high levels of stress, and interference with medical care. The purpose of this study was to document stigma experiences among Latina women living with endometriosis. METHODS: A qualitative design using focus groups was implemented. Thematic analysis was conducted for data interpretation. A total of 50 women participated in five focus groups. RESULTS: The main theme "changuería" emerged as a label applied across multiple contexts and interactions in the lives of participants, suggesting that stigmatization is an ever-present barrier among women living with endometriosis. Participants reported that relatives, partners and health professionals perceive pain during menstruation as something women should be able to manage, producing a sense of inability to disclose the extent of suffering. CONCLUSION: These results highlight the importance of addressing stigma as a way to foster healthcare seeking and minimize its impact on physical, mental health, and wellbeing.

Ibero-American Endometriosis Patient Phenome: Demographics, Obstetric-Gynecologic Traits, and Symptomatology.

Background: An international collaborative study was conducted to determine the demographic and clinical profiles of Hispanic/Latinx endometriosis patients from Latin America and Spain using the Minimal Clinical Questionnaire developed by the World Endometriosis Research Foundation (WERF) Endometriosis Phenome and Biobanking Harmonization Project (EPHect). Methods: This is a cross-sectional study to collect self-reported data on demographics, lifestyle, and endometriosis symptoms of Hispanic/Latinx endometriosis patients from April 2019 to February 2020. The EPHect Minimal Clinical Questionnaire (EPQ-M) was translated into Spanish. Comprehension and length of the translated survey were assessed by Spanish-speaking women. An electronic link was distributed via social media of endometriosis patient associations from 11 Latin American countries and Spain. Descriptive statistics (frequency, means and SD, percentages, and proportions) and correlations were conducted using SPSSv26. Results: The questionnaire was completed by 1,378 participants from 23 countries; 94.6% had self-reported diagnosis of endometriosis. Diagnostic delay was 6.6 years. Most participants had higher education, private health insurance, and were employed. The most common symptoms were back/leg pain (85.4%) and fatigue (80.7%). The mean number of children was 1.5; 34.4% had miscarriages; the mean length of infertility was 3.7 years; 47.2% reported pregnancy complications. The most common hormone treatment was oral contraceptives (47.0%). The most common comorbidities were migraines (24.1%), polycystic ovary syndrome (PCOS) (22.2%), and irritable bowel syndrome (21.1%). Most participants (97.0%) experienced pelvic pain during menses; for 78.7%, pain was severe; 86.4% reported dyspareunia. The mean age of dysmenorrhea onset was 16.2 years (SD ± 6.1). Hormone treatments were underutilized, while impact was substantial. Pain catastrophizing scores were significantly correlated with pain intensity (p < 0.001). Conclusion: This is the first comprehensive effort to generate a clinical-demographic profile of Hispanic/Latinx endometriosis patients. Differences in clinical presentation compared to other cohorts included higher prevalence and severity of dysmenorrhea and dyspareunia and high levels of pain catastrophizing. Though future studies are needed to dissect the impact of race and ethnicity on pain and impact, this profile is the first step to facilitate the recognition of risk factors and diagnostic features and promote improved clinical management of this patient population. The EPHect questionnaire is an efficient tool to capture data to allow comparisons across ethnicities and geographic regions and tackle disparities in endometriosis research.