“It Gave Me the Validation That I Wasn’t Crazy”: The Impact of Diagnosis and Treatment on Endometriosis Patient Journeys in Aotearoa New Zealand

Katherine Ellis, Alina Meador, Rachael Wood, Jacqueline F. Donoghue
In: Reproductive Medicine · 2026 · vol. 7(3) , pp. 38 · doi:10.3390/reprodmed7030038 · W7172430613
article OA: gold CC0
🔓 Open OA copy View on OpenAlex View at publisher
⚙ AI-generated summary by claude@2026-08, 2026-08-09 ⓘ

This study found that endometriosis patients in New Zealand experience a median 10-year diagnostic delay, with diagnosis often bringing relief, but few treatments are perceived as effective, highlighting challenges in care.

One-sentence paraphrase of the abstract; not a substitute for reading it. No clinical advice. How this works

Abstract

Background: Endometriosis is a condition that is very challenging to diagnose and manage. Objectives: The purpose of this study is to assess the impacts of diagnosis and treatments in the journeys of endometriosis patients in Aotearoa New Zealand. Methods: Two online surveys were conducted with cohorts of 616 and 679 endometriosis patients to assess diagnosis and treatments, respectively. Results: In this exploratory study, the diagnosis cohort self-reported a median delay from symptom onset to confirmation of the diagnosis of 10 years, with a median delay from symptom onset to first seeing a doctor (“doctor delay”) of 4 years. Upon receiving their diagnosis, 53.7% indicated the “number one” emotion they felt was relief. In the treatment cohort, the only medical management strategy perceived as “effective” by over 75% of users was hysterectomy (84.3%), despite this not being a cure for endometriosis. Common first-line treatments were viewed poorly for their perceived effectiveness, with over-the-counter pain relief viewed as effective by 25.8% of users, combined oral contraceptive pills by 23.2% of users, progesterone-only pills by 42.8% of users, and intrauterine contraceptive devices by 49.7% of users. Conclusions: Endometriosis is a condition typified by challenges for patients with its delayed diagnosis, resistance to management, and a high prevalence of discouraging experiences in medical care settings. These large-sample cohorts highlight that improvements in the diagnosis and management of endometriosis warrant urgent attention by clinicians and policymakers alike.

My notes (saved in your browser only)

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (66)

Source provenance

openalex
last seen: 2026-08-12T06:00:24.528921+00:00
License: CC0 · commercial use OK