Stigma and Endometriosis: A Brief Overview and Recommendations to Improve Psychosocial Well-Being and Diagnostic Delay
Abstract
:1. Introduction
2. Epidemiology, Natural History and Comorbidities
3. Physical and Mental Health Consequences of Endometriosis
4. Stigma
5. Endometriosis-Related Stigma
6. Recommendations
- (1)
- Assessment of the Prevalence of Endometriosis-Related Stigma. Despite the high prevalence of endometriosis, there is only a small handful of qualitative studies exploring the phenomenology of endometriosis-related stigma. To date and to the authors’ knowledge, there are no published studies that have quantitatively assessed and established this phenomenon; therefore, while the frequency and extent of endometriosis-related stigma is unknown, we hypothesize that is likely a common occurrence. Repeated cross-sectional, longitudinal, and a variety of other study designs could be employed to estimate point prevalence, period prevalence, lifetime prevalence, and other epidemiologic parameters of endometriosis-related stigma. Such studies may also provide much needed data on life-course implications of stigma from adolescence to postmenopause.
- (2)
- Conceptualization and Development of Scales to Assess and Characterize Endometriosis-Related Stigma. There are currently no published scales designed to assess stigma associated with endometriosis. Conceptualization and development of scales with validated psychometric properties to measure and assess constructs of endometriosis-related stigma are needed. These scales could be used to facilitate assessment of stigma in the general population and in clinical settings, such as primary care, adolescent medicine, obstetrics and gynecology, and women’s health clinics [41]. A number of scales have been developed, tested, and validated to measure and assess stigma experienced by those living with several medical conditions and psychiatric disorders such as HIV, HCV, obesity, tuberculosis, T2DM, depression, and anxiety [76,77,78,79,80]. These respective scales have advanced public health and clinical management of condition-specific stigma and improved awareness of stigma-related impacts in research and in clinical settings. The creation of endometriosis-specific scales could facilitate achievement of similar endpoints concerning endometriosis.
- (3)
- More Qualitative Studies on Endometriosis-Related Stigma. There is a growing body of literature that examines stigma associated with menstruation and a smaller set that examines the lived experience of endometriosis concerning medical support and patient satisfaction; however, the number of studies with a specific focus on endometriosis-related stigma is meager. An in-depth search of databases (e.g., PubMed, PsychInfo, and CINAHL Plus) for published studies with “endometriosis” and “stigma” or “stigmatisation” in the title or abstract (publication range, 1980–April 2021) only yields five relevant publications: two qualitative studies on women’s lived experiences with endometriosis (presented in-depth in this paper) [74,75], one brief editorial [47], SWHR’s 2019 review paper on endometriosis [6], and a qualitative study on the perceptions of adolescent girls and boys about the symptoms of endometriosis as sources of stigma and shaming [41]. This is disconcerting, given the prevalence of endometriosis and its public health impact. More qualitative studies are needed to examine endometriosis-related stigma and to give voice to the experiences of individuals living with endometriosis—especially diverse groups of people.
- (4)
- Widespread Endometriosis Awareness Campaigns. Undoubtedly, targeted public health awareness campaigns improved awareness of HIV, HCV, T2DM, and mental illness among health systems, health care providers, and the general population [81,82,83,84,85,86,87,88]. They also modified negative societal beliefs and attitudes toward their respective marginalized populations. Implementing comparable awareness campaigns could achieve similar outcomes. Population-wide and health system-wide endometriosis awareness campaigns would foster a safe environment for education and healthy communication between individuals living with endometriosis and their family members, intimate partners, and health care providers [41]. Societal awareness and acknowledgment of endometriosis could increase empathy and support for those living with endometriosis, promote disclosure of symptoms among affected individuals, and result in more investigative responses by health care providers, which altogether may lead to earlier detection and treatment of endometriosis.
- (5)
- Development and Implementation of Anti-Stigma Interventions for Endometriosis-Related Stigma. Findings from quantitative and qualitative studies could be used to develop and implement novel, theory-driven anti-stigma or stigma-reduction interventions. Alternatively, using implementation science approaches, existing interventions used to combat stigma for diseases such as HIV, HCV, and T2DM could be adapted for translation, testing, and use for endometriosis-related stigma. Endometriosis-related stigma is dynamic and multidimensional (e.g., intrapersonal, interpersonal, structural), thus, it is important to consider development and implementation of interventions with multilevel approaches [89]. Further, interventions should not be limited to delivery among the stigmatized. Whether a novel intervention or the translation of existing ones, approaches concerning endometriosis-related stigma should give equal consideration to the importance of engaging the stigmatized and stigmatizers, as well as the health systems, providers, and social environments that perpetuate stigmatization.
- (6)
- Acknowledgement of and Stances against Endometriosis-Related Stigma by Professional Associations. Professional associations in public health, medical, and women’s health spaces should strategically underscore and highlight endometriosis as a commonly deleterious yet overlooked health condition. Organizations have captive audiences for which public acknowledgement of endometriosis-related stigma as a factor that undermines physical and psychosocial well-being and access to adequate health care would have wide-reaching benefits. These organizations should also publicly take a stance against endometriosis-related stigma and issue a call for action among their relevant constituents. Such public actions could help widen the impact of novel awareness campaigns and encourage increased funding for public health and clinical intervention research for endometriosis-related stigma.
7. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Sims, O.T.; Gupta, J.; Missmer, S.A.; Aninye, I.O. Stigma and Endometriosis: A Brief Overview and Recommendations to Improve Psychosocial Well-Being and Diagnostic Delay. Int. J. Environ. Res. Public Health 2021, 18, 8210. https://doi.org/10.3390/ijerph18158210
Sims OT, Gupta J, Missmer SA, Aninye IO. Stigma and Endometriosis: A Brief Overview and Recommendations to Improve Psychosocial Well-Being and Diagnostic Delay. International Journal of Environmental Research and Public Health. 2021; 18(15):8210. https://doi.org/10.3390/ijerph18158210
Chicago/Turabian StyleSims, Omar T., Jhumka Gupta, Stacey A. Missmer, and Irene O. Aninye. 2021. "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, no. 15: 8210. https://doi.org/10.3390/ijerph18158210