Endometriosis Healthcare for Individuals with Intellectual Disabilities: A Comprehensive Literature Review


Alan Santinele Martino, University of Calgary; Miila Gordon, Cumming School of Medicine, University of Calgary

Endometriosis affects approximately 10% of the population worldwide, the condition occurs when cells similar to the lining of the uterus migrate outside of the reproductive tract, causing pain and inflammation (World Health Organization, 2023). Despite the prevalence of endometriosis among individuals labelled/with intellectual disability, studies routinely overlook the unique experiences of this particular social group, perpetuating systemic barriers that inhibit access to comprehensive gynecological and sexual healthcare. This paper critically examines the intersection of endometriosis and intellectual disability, highlighting significant gaps in the medical literature and proposing a paradigm shift towards a more inclusive and equitable healthcare approach. To achieve that, we conducted a systematic literature review which included 35 primary, peer-reviewed scholarly articles regarding intellectual disabilities and endometriosis. Our specific research objectives were to identify relevant studies that examine the experiences, challenges, and healthcare needs of individuals with both endometriosis and intellectual disability, and potential research gaps facing this demographic. To accomplish this, a variety of electronic databases were searched pertaining to the intersection of endometriosis and intellectual disability. Search terms included “endometriosis” and “intellectual” to ensure inclusivity, the search strategy was adapted to the specific syntax and requirements of each database. Studies implicated in this review were published in English, and included individuals from a variety of backgrounds. Our review exposes some patronizing language and attitudes toward people with disability living with endometriosis. Currently, little is known about the number of persons labelled/with intellectual disability who also live with endometriosis. Terminology commonly used in this literature tends to infantilize disabled and reinforces outdated stereotypes that de-sexualize individuals labelled/with intellectual disability. Terms, such as “mental retardation”, “girls”, and “profoundly retarded,” were some of the descriptions used to refer to people labelled/with intellectual disabilities. This is reflected not only in discussions but also in the practices concerning menstrual management for this population. Such narratives not only fail to acknowledge the sexual autonomy of individuals labelled/with intellectual disability but also obscure the pressing issues they face, including the increased risk of sexual exploitation and the challenges in accessing affirmative healthcare, which can include medication, surgery, and contradictions to hormonal treatment methods. By scrutinizing the research and clinical practices surrounding menstrual management, contraception, and sexual education, this paper reveals an urgent need for healthcare professionals to develop more effective communication strategies and to employ diagnostic tools that are sensitive to the complexities of endometriosis in intellectually disabled individuals. We argue for educational resources that incorporate anatomically accurate diagrams and terminology adapted for those with cognitive impairments. Our call to action goes beyond performative measures and seeks genuine inclusivity to enhance the healthcare of individuals with intellectual disabilities and endometriosis. Physicians, healthcare providers, caregivers, and support agencies must work together to bridge communication gaps. Healthcare providers have an important opportunity to educate disabled patients and, where applicable, caregivers about the management options for endometriosis symptoms, with a focus on enhancing communication.

Non-presenting author: Erin Brennand, Cumming School of Medicine, Department of Obstetrics and Gynecology, University of Calgary

This paper will be presented at the following session: