Integrating Patient Voices in Recommendations for Minimising Medical Distress in Endometriosis Healthcare
Tracks
Ballroom 1
| Tuesday, September 1, 2026 |
| 1:25 PM - 1:45 PM |
| JW Grand Ballroom |
Overview
Associate Professor Leesa Van Niekerk, University Of Tasmania
Three Key Learnings
1. An increased understanding of medical distress and trauma associated with endometriosis and persistent pelvic pain.
2. Recommendations for preventing medical distress and trauma, including trauma-informed language.
3. An understanding of the use of co-design principles in the clinical assessment of medical distress and trauma.
Speaker
Associate Professor Leesa Van Niekerk
Psychology Clinic Director
University Of Tasmania
Integrating Patient Voices in Recommendations for Minimising Medical Distress in Endometriosis Healthcare
Abstract
Early diagnostic frameworks for trauma were shaped by insights gained from the experiences of combat and first responders. These frameworks, while potentially capturing some aspects of medical trauma, often fail to capture the nuances of medical distress and the broader relational components of medical distress and trauma. More recently, the International Society for Traumatic Stress Studies (2023) defined medical trauma as 'a negative psychological and physiological reaction in response to a medical event'. This definition may not adequately account for the distress associated with the experience of successive microtrauma connected to the assessment and management of endometriosis and persistent pelvic pain. To date, much of the research has focused on exposure to adverse life events, external to the medical system and experiences, with a limited focus on distress connected to healthcare experiences. However, More recently, people with endometriosis and pelvic pain have shared adverse medical experiences through avenues such as Instagram and Consumer Advocacy Groups. Using lived experience accounts gathered through qualitative research studies, we have identified the types of medical distress and trauma experienced by people with endometriosis and pelvic pain and identified a need for increased access to trauma-informed, and patient-centered endometriosis healthcare. This presentation will share the insights gained through lived experience accounts and provide recommendations for minimising the likelihood of medical distress and trauma. These recommendations will include a focus on trauma-informed language for practitioners and the use of lived experience accounts to inform healthcare guidelines and clinical assessment measures.
Biography
Leesa Van Niekerk is an Associate Professor and Director of the University of Tasmania’s postgraduate psychology clinic, and a registered Clinical Psychologist, with over 25 years of clinical experience. Dr Van Niekerk’s clinical and research fields of interest include the interdisciplinary management of endometriosis and persistent pelvic pain, psychological interventions, trauma-informed care, complex trauma, health-related quality of life, sexual wellbeing, and body image. She is the Chair of the Endometriosis Australia Research Committee, a member of the Australasian Interdisciplinary Researchers in Endometriosis (AIRE) network, and a member of the National Endometriosis Clinical and Scientific Trials (NECST) Network Steering Committee.