Endometriosis Care Pathways for Autistic and Non-Autistic Women in Alberta: Barriers and Opportunities


Jordan Parks, Community Rehabilitation and Disability Studies, Department of Community Health Sciences, University of Calgary, Canada

Endometriosis, a prevalent inflammatory condition affecting women, often goes undiagnosed, contributing to substantial global health challenges. Characterized by the presence of endometrial-like tissue outside of the uterus, this condition has been linked to severe pelvic pain, fertility issues, and more. Despite its prevalence, endometriosis remains underdiagnosed, with significant diagnostic delays. Alberta in particular faces intensified challenges, marked by a limited number of fellowship-trained specialists relative to the number of affected women. This disparity raises concerns about the efficiency and accessibility of endometriosis diagnostic care pathways for women in Alberta. The impact of endometriosis extends beyond physical health, greatly affecting relationships, fertility, and sexual well-being. However, despite the growing awareness around this condition, there is limited exploration of the challenges faced by specific subgroups of women, such as those who are Autistic or generally identify as neurodivergent. Notably, gynecological providers may feel unprepared to address the unique needs of disabled women, contributing to gaps in care pathways. The objectives of this study are twofold: firstly, to identify and comprehend barriers, challenges, and differences in existing diagnostic pathways; secondly, to develop customized care pathways for both groups’ unique needs. This research intends to streamline diagnostic journeys for Albertan women, specifically Albertan Autistic women, equipping healthcare providers with the tools necessary for patient-centered care. Our primary aim is to delineate endometriosis care pathways and how they diverge for neurotypical and neurodivergent women, focusing on factors contributing to delays. Grounded in feminist disability studies and critical disability theory, this research prioritizes women’s lived experiences within healthcare, using an intersectional lens. While existing literature on diagnostic experiences of endometriosis exists, there remains a significant gap in the Canadian context. To date, only one study has focused on treatment types in Canada, without delving into the timelines and barriers encountered. Our research uniquely explores the experiences of neurodivergent/Autistic women in Alberta, adding a new dimension to current knowledge. Methods: This qualitative study in Alberta will encompass five focus groups, comprising a total of 25-30 participants, with three groups of 5-6 neurotypical women and two groups of 5-6 neurodivergent women, all surgically diagnosed with endometriosis and aged 18 or above. The focus group sessions will be conducted either in-person or via Zoom based on participant preferences, and they will be recorded and transcribed verbatim. Participants will actively engage in discussions regarding their diagnostic journeys, delineating the steps taken and associated timeframes. The study methodology involves a unique approach of obtaining participants perspectives on the duration of each step, aiming to establish an average range for various aspects of the diagnostic process. Additionally, participants will be prompted to articulate challenges faced, barriers encountered, factors that facilitated navigation, and suggestions for potential improvements. A visual representation of the diagnostic pathway will be collaboratively created during the focus group sessions. The comprehensive data collected, including responses to various questions, will be analyzed to derive meaningful insights. This work is currently in progress in the early stages of research, and the results will be ready by the expected time of the conference. This research aligns seamlessly with the session objectives, which seek to foreground the intersections between disability and sexuality, challenging the prevailing stereotypes and fostering inclusive narratives. By focusing on the experiences of neurodivergent and Autistic women navigating the complexities of endometriosis care pathways in Alberta, this contributes to the sessions’ goals of ‘cripping’ sexualities. Importantly, this work aligns with the session’s emphasis on methodological approaches to research in this area. As this work actively engages in creating visuals, such as infographics derived from focus group discussions, to visually represent endometriosis care pathways. This visual representation adds depth to this qualitative study, providing an accessible and impactful way to ‘crip’ our communication of the complexities within care pathways for women in Alberta. Overall, this work contributes to the session’s overarching goals by providing a unique perspective on the intersections of disability, gender, and health within the context of endometriosis, fostering a more inclusive dialogue on sexualized pain-related conditions as it intersects with disability, and employing innovative methodological approaches through visual representation.

Non-presenting authors: Alan Santinele Martino, University of Calgary; Erin Brennand, University of Calgary

This paper will be presented at the following session: