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

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.

A single‐blind, randomized, pilot study of a brief mindfulness‐based intervention for the endometriosis‐related pain management

“…Additional challenges emerge from considerable diagnosis delay, difficulty to fulfil the social role of motherhood and lack of family and social support due to condition misunderstanding (Sims et al, 2021). Those factors create a context of high psychological stress (Brasil et al, 2020), which interacts with the endometriosis pathophysiology (Cuevas et al, 2018) and pain in a vicious cycle pattern (de França Moreira et al, 2021; Toth, 2010).…”

Cross-sectional study for derivation of a cut-off value for identification of a timely versus late diagnosis of endometriosis based on analytical and descriptive research methods

“…A range of physician-related [7,8] and patient-related factors [9] as well as stigmatization of the topic of menstruation by society have been identi ed [10,11]. The consequences of the disease being diagnosed late (or too late) on the course of disease, the quality of life and the costs of the disease have already been documented in studies [12,13].…”

“…Various studies have shown that endometriosis reduces the quality of life of affected women [1,18,19] . In addition to having physical, mental and social consequences for affected women at the individual level [12], endometriosis is estimated to have signi cant economic impacts on society as a whole [20][21][22], due mainly to increased healthcare utilization and reduced work productivity [21,23,24] . Endometriosis is estimated to affect 4-10% of women of reproductive age, making it one of the most common benign gynecological conditions [25][26][27] .…”

“…Future research should focus, in particular, on the impact of endometriosis diagnostic delay on healthrelated quality of life -the most important patient-related outcome [4,12,12,12,12,23,32] . Therefore, we utilized data from German population of the EndoCost study [2,3] to identify and empirically test a potentially suitable cut-off point as a theory-based measure of endometriosis diagnostic delay.…”

Internet-based cognitive behavioral therapy for improving health-related quality of life in patients with endometriosis: study protocol for a randomized controlled trial

“…We therefore decided to develop an internet-based CBT (iCBT) program. Such programs have previously been proven effective in the treatment of psychological [ 46 ] as well as psychosomatic [ 47 ] and somatopsychic [ 48 ] disorders and are considered as effective as face-to-face-therapy [ 49 , 50 ]. We hypothesize that endometriosis-related QoL will be significantly improved when patients take part in our iCBT training.…”