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Stigma and Endometriosis: A Brief Overview and Recommendations to Improve Psychosocial Well-Being and Diagnostic Delay

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  • Omar T. Sims

    (Department of Social Work, College of Arts and Sciences, University of Alabama at Birmingham, Birmingham, AL 35294, USA
    Department of Health Behavior, School of Public Health, University of Alabama at Birmingham, Birmingham, AL 35294, USA
    Center for AIDS Research, School of Medicine, University of Alabama at Birmingham, Birmingham, AL 35294, USA
    Integrative Center for Healthy Aging, School of Medicine, University of Alabama at Birmingham, Birmingham, AL 35294, USA)

  • Jhumka Gupta

    (Department of Global and Community Health, College of Health and Human Services, George Mason University, Fairfax, VA 22030, USA)

  • Stacey A. Missmer

    (Department of Obstetrics, Gynecology and Reproductive Biology, College of Medicine, Michigan State University, East Lansing, MI 49503, USA
    Department of Epidemiology, Harvard T.H. Chan School of Public Health, Harvard University, Cambridge, MA 02115, USA)

  • Irene O. Aninye

    (Society for Women’s Health Research, Washington, DC 20036, USA)

Abstract

Endometriosis is a chronic gynecological disease that affects approximately 1 in 10 women of reproductive age. Symptoms of severe pelvic pain, infertility, fatigue, and abnormal menstruation can cause significant negative effects on an individual’s physical and mental health, including interactions with their family, friends, and health care providers. Stigma associated with endometriosis has been under-studied and is rarely discussed in current literature. Herein, this paper aims to provide a brief overview of published literature to explore and establish the plausibility of stigma as a driver of suboptimal psychosocial well-being and diagnostic delay among individuals living with endometriosis. We present the clinical characteristics and physical and mental health consequences associated with endometriosis, highlight several theoretical constructs of stigma, and review the limited studies documenting women’s lived experiences of endometriosis-related stigma. To mitigate harmful effects of this phenomenon, we recommend increasing efforts to assess the prevalence of and to characterize endometriosis-related stigma, implementing awareness campaigns, and developing interventions that combat the multidimensional negative effects of stigma on timely care, treatment, and quality of life for individuals living with endometriosis.

Suggested Citation

  • Omar T. Sims & Jhumka Gupta & Stacey A. Missmer & Irene O. Aninye, 2021. "Stigma and Endometriosis: A Brief Overview and Recommendations to Improve Psychosocial Well-Being and Diagnostic Delay," IJERPH, MDPI, vol. 18(15), pages 1-12, August.
    • Handle: RePEc:gam:jijerp:v:18:y:2021:i:15:p:8210-:d:607344
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    References listed on IDEAS

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    1. Stuber, Jennifer & Meyer, Ilan & Link, Bruce, 2008. "Stigma, prejudice, discrimination and health," Social Science & Medicine, Elsevier, vol. 67(3), pages 351-357, August.
    2. Luigi Della Corte & Claudia Di Filippo & Olimpia Gabrielli & Sabrina Reppuccia & Valentina Lucia La Rosa & Rosalia Ragusa & Michele Fichera & Elena Commodari & Giuseppe Bifulco & Pierluigi Giampaolino, 2020. "The Burden of Endometriosis on Women’s Lifespan: A Narrative Overview on Quality of Life and Psychosocial Wellbeing," IJERPH, MDPI, vol. 17(13), pages 1-17, June.
    3. Hatzenbuehler, M.L. & Phelan, J.C. & Link, B.G., 2013. "Stigma as a fundamental cause of population health inequalities," American Journal of Public Health, American Public Health Association, vol. 103(5), pages 813-821.
    4. M Elle Saine & Tyler M Moore & Julia E Szymczak & Laura P Bamford & Frances K Barg & Nandita Mitra & Jason Schnittker & John H Holmes & Vincent Lo Re III, 2020. "Validation of a modified Berger HIV stigma scale for use among patients with hepatitis C virus (HCV) infection," PLOS ONE, Public Library of Science, vol. 15(2), pages 1-19, February.
    5. Cook, Jonathan E. & Purdie-Vaughns, Valerie & Meyer, Ilan H. & Busch, Justin T.A., 2014. "Intervening within and across levels: A multilevel approach to stigma and public health," Social Science & Medicine, Elsevier, vol. 103(C), pages 101-109.
    6. Phelan, Jo C. & Link, Bruce G. & Dovidio, John F., 2008. "Stigma and prejudice: One animal or two?," Social Science & Medicine, Elsevier, vol. 67(3), pages 358-367, August.
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    1. Vincenza Cofini & Mario Muselli & Chiara Lolli & Leila Fabiani & Stefano Necozione, 2022. "Does Quality of Care (QoC) Perception Influence the Quality of Life (QoL) in Women with Endometriosis? Results from an Italian Nationwide Survey during Covid Pandemic," IJERPH, MDPI, vol. 20(1), pages 1-15, December.
    2. Vincenza Cofini & Mario Muselli & Erika Limoncin & Chiara Lolli & Erika Pelaccia & Maurizio Guido & Leila Fabiani & Stefano Necozione, 2023. "The Perception of the Quality of Professional Healthcare Assistance for the Management of Endometriosis: Findings from a National Survey in Italy," IJERPH, MDPI, vol. 20(21), pages 1-19, October.
    3. Sadie Bergen & Doris Murimi & Caitlin Gruer & Gibson Munene & Atunga Nyachieo & Maureen Owiti & Marni Sommer, 2023. "Living with Endometriosis: A Narrative Analysis of the Experiences of Kenyan Women," IJERPH, MDPI, vol. 20(5), pages 1-12, February.

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