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

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.