Poster Presentation ESA-SRB-APEG-NZSE 2022

The experiences of Endometriosis patients with diagnosis and treatment in New Zealand (#419)

Katherine Ellis 1 , Rachael Wood 2 , Deborah Munro 1
  1. Department of Mechanical Engineering, University of Canterbury, Christchurch, New Zealand
  2. Department of Chemical and Process Engineering, University of Canterbury, Christchurch, New Zealand

Endometriosis is a chronically painful, invasive, inflammatory (1) disease, with limited treatment options (2), long diagnostic delays (3), and impacts 10% of females in New Zealand (4). The goal of this research was to understand the patient experience and include patient voices in the guidance of research priorities.

Fifty New Zealand endometriosis patients participated in anonymous, asynchronous, text-based group discussions on the VisionsLive platform. The patients ranged in age from 18-48. The patients answered 50 questions, 23 text-based and 27 quantitative, and then took part in online group discussions.

The average delay from symptom onset to a surgically confirmed diagnosis was 8.54 years. The top five reported symptoms within the cohort were pain-based, and the participants discussed the many impacts of this pain on their work and education. The four main diagnostic tools employed on this cohort were sharing their symptom history with a medical practitioner (88%), laparoscopy (82%), abdominal (72%) and transvaginal ultrasounds (68%). The most common emotions patients experienced following receiving a diagnosis of endometriosis were relief (86%), feeling overwhelmed (54%), and anger (32%). The main treatments offered to this cohort were pain relief (96%), laparoscopic surgery (84%) and the combined oral contraceptive pill (80%). Of these three treatments, only laparoscopic surgery was viewed positively by the majority of users, with 67% considering laparoscopy an effective treatment, compared to 46% of pain relief users, and 25% of combined oral contraceptive pill users.

Gathering the voices of patients revealed that long delays to diagnosis and dismissal by medical practitioners frequently manifests as a reaction of relief by patients once diagnosed. Results also showed current treatment options were often considered ineffective, but were routinely offered as the first, or only, options for patients. It is therefore important that both faster routes to diagnosis and more effective treatment options be developed.

  1. Kiesel L, Sourouni M. Diagnosis of endometriosis in the 21st century. Climacteric. 2019;22(3):296-302.
  2. Ellis K, Munro D, Clarke J. Endometriosis Is Undervalued: A Call to Action. Frontiers in Global Women's Health. 2022;3.
  3. Tewhaiti-Smith J, Semprini A, Bush D, Anderson A, Eathorne A, Johnson N, et al. An Aotearoa New Zealand survey of the impact and diagnostic delay for endometriosis and chronic pelvic pain. Scientific Reports. 2022;12(1):4425.
  4. New Zealand Ministry of Health. Endometriosis. In: Health Mo, editor. New Zealand 2022.