'I Wish I Fought for Myself More Instead of Just Letting Doctors Dismiss Me': A Combined Qualitative Analysis of Four Cohorts of Aotearoa New Zealand Endometriosis Patients.

Abstract

Background: Endometriosis is a chronic condition that affects around 10% of New Zealand women and people presumed female at birth, however, limitations in diagnosis and management mean patients wait a decade on average from symptom onset to diagnosis.

Aims: The purpose of this article is to highlight recurrent themes in the experiences of four independent cohorts of endometriosis patients with surgically confirmed or clinically suspected endometriosis in New Zealand.

Methods and materials: Four cohorts of patients (n = 111), one with mixed ethnicities, gender and sexual identities (n = 50), one with Māori participants (n = 27), one with Pasifika participants (n = 10) and one with LGBTQIA+ participants (n = 28) were recruited in 2022 and 2023 to participate in online, asynchronous, text-based discussion groups about their journeys with endometriosis.

Results: Throughout each cohort, there were strong themes of normalisation of pain and dismissal, the value and difficulty of endometriosis diagnosis and the power of the practitioner over the lives of patients.

Discussion: There are key issues in the journeys of endometriosis that occur regardless of ethnicity, gender identity or sexuality. Many of these issues are tied up in societal attitudes that dismiss and downplay menstrual distress. When these attitudes are shared by the medical practitioners caring for endometriosis patients, this has been shown to severely harm patient's journeys to diagnosis, sense of self and capacity to manage the disease.