Kocas H Deniz, Rubin Lisa R, Lobel Marci
Department of Clinical Psychology, The New School for Social Research, New York, NY, USA.
Department of Psychology and Department of Obstetrics, Gynecology and Reproductive Medicine, Renaissance School of Medicine, Stony Brook University, Stony Brook, NY, USA.
Eur J Obstet Gynecol Reprod Biol X. 2023 Aug 14;19:100228. doi: 10.1016/j.eurox.2023.100228. eCollection 2023 Sep.
This review provides an overview of patient experiences of endometriosis, endometriosis-related types and sources of stigma pertaining to menstruation, chronic pain, and infertility, and their impact on patients' mental health with particular implications for patient care. Because endometriosis is a complex disease with multifactorial etiology, complicated pathophysiology, and a spectrum of clinical features, diagnosis of endometriosis is typically a lengthy process, and many patients experience initial misdiagnosis. A hallmark symptom is severe menstrual pain with other symptoms including chronic pelvic pain, dysmenorrhea, and infertility. Prior research documents that the diagnostic odyssey, complex management, disabling and unpredictable nature of the disease, and painful symptom profile affect multiple life domains of patients, resulting in poor physical, social, and psychological functioning and clinically-significant rates of anxiety and depression for many. More recently, stigma has been recognized as a potent contributor to poor mental health in endometriosis patients, but existing research is limited and largely atheoretical. We identify major sources of stigma related to endometriosis, including menstrual stigma, chronic pain stigma, and infertility stigma, and their likely impact on patients and health care provision. An integrative theoretical approach is described to facilitate research on the prevalence and effects of endometriosis stigma and their explanatory mechanisms, highlighting specific well-validated psychological instruments to assess stigma. Implications for patient care are emphasized. Better understanding of stigma and mental health in people with endometriosis will enhance the standard of care for this patient population.
本综述概述了子宫内膜异位症患者的经历、与子宫内膜异位症相关的耻辱类型及来源,这些耻辱涉及月经、慢性疼痛和不孕,以及它们对患者心理健康的影响,对患者护理具有特殊意义。由于子宫内膜异位症是一种病因多因素、病理生理复杂且具有一系列临床特征的复杂疾病,其诊断通常是一个漫长的过程,许多患者最初会被误诊。一个标志性症状是严重的痛经,其他症状包括慢性盆腔疼痛、痛经和不孕。先前的研究表明,诊断过程漫长、管理复杂、疾病具有致残性和不可预测性以及疼痛症状等会影响患者生活的多个领域,导致许多患者身体、社交和心理功能不佳,焦虑和抑郁的临床发生率很高。最近,耻辱感被认为是导致子宫内膜异位症患者心理健康不佳的一个重要因素,但现有研究有限且大多缺乏理论依据。我们确定了与子宫内膜异位症相关的主要耻辱来源,包括月经耻辱、慢性疼痛耻辱和不孕耻辱,以及它们对患者和医疗服务的可能影响。描述了一种综合理论方法,以促进对子宫内膜异位症耻辱的患病率、影响及其解释机制的研究,强调了评估耻辱感的特定经过充分验证的心理工具。强调了对患者护理的影响。更好地了解子宫内膜异位症患者的耻辱感和心理健康状况将提高该患者群体的护理标准。