The Experiences of Endometriosis Patients with Diagnosis and Treatment in New Zealand

Type of content
Journal Article
Thesis discipline
Degree name
Frontiers Media SA
Journal Title
Journal ISSN
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Ellis K
Wood R
Munro D

Endometriosis is a chronically painful, invasive, inflammatory disease, with limited treatment options and long delays to diagnosis, which impacts 10% of females in New Zealand. Introduction: As part of a larger group discussion study, this paper covers three themes associated with endometriosis patient experiences: intensity of pain, diagnostic tool shortcomings and perspectives of treatment options. Materials and methods: The goal of this research was the inclusion of patient voices to guide research priorities. In early 2022, 50 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. Results and discussion: The average age of symptom onset was 15.3 years, while the average delay from symptom onset to a working or surgically confirmed diagnosis was 7.91 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 abdominal ultrasound (72%), transvaginal ultrasound (68%), laparoscopy (82%) and sharing their symptom history with a medical practitioner (88%). 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 users for pain relief, and 25% of users for the combined oral contraceptive pill. Conclusions: Gathering the voice 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 treatment options such as pain relief and hormonal medications were often considered ineffective, but were routinely offered as the first, or only, options for patients. It is therefore important that both quicker routes to diagnosis and more effective treatment options be developed.

Ellis K, Wood R, Munro D (2022). The Experiences of Endometriosis Patients with Diagnosis and Treatment in New Zealand. Frontiers in Global Women's Health. 3. 991045-.
chronic pain, diagnosis, endometriosis, hysterectomy, laparoscopy, pain relief, treatment, ultrasound
Ngā upoko tukutuku/Māori subject headings
Hauora | Health::Mate | Whara (Mate); Health problems; Injuries
ANZSRC fields of research
42 - Health sciences::4206 - Public health::420606 - Social determinants of health
44 - Human society::4405 - Gender studies::440509 - Women's studies (incl. girls' studies)
32 - Biomedical and clinical sciences::3215 - Reproductive medicine::321502 - Obstetrics and gynaecology
45 - Indigenous studies::4510 - Te hauora me te oranga o te Māori (Māori health and wellbeing)::451018 - Ngā tokoingoa pāpori o te hauora o te Māori (Māori social determinants of health)
45 - Indigenous studies::4516 - Pacific Peoples health and wellbeing::451616 - Pacific Peoples social determinants of health
COPYRIGHT © 2022 Ellis, Munro and Wood. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.