Huriye Deniz Koçaş, PhD
Postdoctoral Fellow at NYU Langone Health
Endometriosis is a chronic, disabling disease that affects 1 in 10 adults with a uterus (Zondervan et al., 2020). Endometriosis occurs when tissue similar to the lining of the uterus, the endometrium, migrates outside the womb (As-Sanie et al., 2019). Symptoms vary depending on each person; however, a hallmark symptom is severe menstrual pain, which affects social and occupational life and is often debilitating. People living with endometriosis consistently endorse higher levels and rates of depression compared to people without the condition (Gambadauro et al., 2019; Lagana et al., 2017; Pope et al., 2015), with some even contemplating suicide (Cox et al., 2003; Huntington & Gilmour, 2005).
The majority of endometriosis-related psychology studies have sought to understand the impact of endometriosis-related pain on depression (Roth et al., 2011; McPeak et al., 2018; Vannuccini et al., 2017). Recently, it has been suggested that stigma may also play a role in mental health distress among adults living with endometriosis (Sims et al., 2021). The limited number of stigma-related studies in the endometriosis literature reveal that those living with endometriosis experience dismissal and invalidation by friends, family, and medical professions, which leads to isolation, lack of social support, and ineffective medical care (e.g., Gupta et al., 2021; Koçaş et al., 2023). However, studies that explore how stigma contributes to depressive symptoms are limited, and those that do exist are largely based on qualitative methods; rigorous quantitative research is needed.
Menstrual stigma plays a critical role in the stigmatization of endometriosis, given that menstrual pain is a hallmark symptom (Gupta et al., 2018; Matías-González et al., 2021; Seear, 2009). Yet, studies have not explored the concepts of endometriosis stigma and menstrual stigma separately, nor have they sought to understand how they may jointly contribute to depressive symptoms. Furthermore, many studies fail to account for the complexity of stigma or its different types (Brohan et al., 2010; Corrigan and Watson, 2002).
My work fills research gaps identified above by seeking to understand the relationship between endometriosis self-stigma, menstrual self-stigma, and depressive symptoms in endometriosis patients. I specifically focused on self-stigma, given that it has been associated with higher levels of depressive symptoms in other chronic diseases (Dubreucq et al., 2021; Pérez-Garín et al., 2015). Notably, a measure of endometriosis stigma did not exist at the time of the study, so I adapted an existing measure, the Stigma Scale for Chronic Illness (SSCI; Rao et al., 2009), for the endometriosis population.
The findings of my survey-based study with 410 participants living with endometriosis suggested that menstrual self-stigma contributes to depressive symptoms via its association with endometriosis self-stigma, but endometriosis self-stigma is also independently associated with depressive symptoms. The study also showed that the adapted SSCI is a reliable scale for measuring endometriosis self-stigma. The study highlights the relationship between stigma and depressive symptoms in individuals living with endometriosis, and that the adapted version of the SSCI can enable further research on endometriosis stigma and mental health.
Endometriosis stigma is an important contributing factor to high rates of depressive symptoms in this population. Reducing endometriosis stigma has the potential to improve the mental health and quality of life of those living with endometriosis. My work lays the basis for myriad directions of future research that has implications for clinical care, including understanding sources of stigma, risk and protective factors in the development of stigma, and elements influencing the relationship between stigma and depression, with the end goal of targeted interventions for individuals, clinicians, and communities. A better understanding of psychosocial contributors to mental health and quality of life is critical to enhancing the standard of care for those living with endometriosis.
Acknowledgements: The study was conducted between 2023-2024 at the New School for Social Research under the direction of my doctoral thesis advisor, Dr. Lisa Rubin, and my dissertation committee members, Dr. Marci Lobel and Dr. Lillian Polanco-Roman. I would like to thank the the participants who generously shared their time and experience, as well as the Endometriosis Foundation of America for its crucial support and assistance with participant recruitment.
Dr. Koçaş was also a recipient of a 2024 SfHP Graduate Student Research Award.
References
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