'Not Just Bad Periods': Survey of Aotearoa New Zealand Endometriosis Patients on Their Perspectives on the Impact of Endometriosis Awareness

This survey had 657 participants complete the survey (95% completion rate) with data suitable for analysis (Table  1 ). Of these, 402 participants signed up to participate in advance, and 255 utilised a public link. The majority were Pākehā/NZ European (83.7%), while 12.5% were NZ Māori. Amongst the 407 patients who knew their endometriosis stage, 32.2% had minimal‐mild endometriosis (reported endometriosis stages I‐II), and 67.8% had moderate–severe endometriosis (reported endometriosis stages III‐IV). Amongst those who self‐reported radiologically or surgically confirmed endometriosis, 28.1% were not aware of what stage of endometriosis had been identified. Respondent demographics, and perception of availability of elements of endometriosis care, their awareness of endometriosis at symptom onset and now, and the source through which they first found out about endometriosis. When asked how readily available they felt a range of elements of endometriosis care were (Table  1 ), 33.5% of patients agreed information about endometriosis had been readily available. Meanwhile, 53.9% felt support from friends and family had been readily available, and 21.9% felt support from HCPs. Regarding endometriosis care, 17.7% agreed diagnosis had been readily available to them, while 23.8% agreed treatment options were. The perception of treatment availability was inversely correlated with age (χ 2 (6, N  = 657) = 26.1, p  < 0.001). Those with suspected, rather than confirmed endometriosis were less likely to view treatment (χ 2 (2, N  = 657) = 8.49, p  = 0.014) and diagnosis (χ 2 (2, N  = 657) = 11.4, p  = 0.003) as readily available. Those in younger age groups felt there was greater availability of support from friends and family (χ 2 (6, N  = 657) = 25.6, p  < 0.001). Only five participants (0.8%) felt very knowledgeable about endometriosis at symptom onset, while 47.3% had never heard of the condition (Table  1 ). This lack of knowledge had significant implications. While the median delay in this cohort was 10.0 years (95% CI 9.0–10.0) from symptom onset, those with any awareness of endometriosis at symptom onset had a delay of 9.0 (8.0–10.0) vs. 11.0 (10.0–12.0) for those with no knowledge at onset, a significant delay ( p  = 0.001). The most common source where patients first learnt about endometriosis was HCPs (27.4%), followed by family (17.7%), friends (16.1%), and online searches (16.0%). When those who learnt of endometriosis from a HCP, friends and family, or online ( N  = 533) were compared, those with confirmed endometriosis ( N  = 456) were significantly (χ 2 (2, N  = 533) = 22.9, p  < 0.001) more likely than those with suspected endometriosis ( N  = 77) to have learnt of the condition from a HCP (37.5% versus 11.7%), and less likely to have learnt of the condition online (21.9% vs. 40.3%). When asked where they accessed endometriosis information, the most common sources were online (77.9%), HCPs (19.7%), and books (8.7%). Amongst those accessing online resources, 15.4% noted they utilised social media (particularly Facebook, Instagram and TikTok). To improve understanding of what resources were most needed, respondents were presented with three cohorts of interested audiences: the general public, school students and endometriosis patients (Figure  1 ). For the general public, there were two sub‐audiences highlighted: potential endometriosis patients and everyone else. Respondents viewed the public as needing information about the fundamentals of endometriosis (definitions, symptoms and prevalence) and about the lived experiences of patients (the ‘ realness ’ of the condition and that endometriosis is not ‘ just bad periods’.) For school students, respondents highlighted the need for resources that sufficiently educate students to identify symptoms for themselves or their peers. These resources would focus on improving endometriosis surveillance and ensuring students had a clear pathway to know how to access help. Finally, for endometriosis patients, the primary resource highlighted was identifying clear pathways for support and treatment of symptoms. The answers of respondents to the questions: what is the number one resource that (A) the general public need about endometriosis, (B) students in school need about endometriosis, and (C) endometriosis patients need. Included answers have more than 20 mentions. Answers in overlapping segments met the inclusion criteria of over 20 mentions in each group.

Endometriosis is a common condition which causes significant morbidity [ 10 ] and more needs to be done to identify, treat and support patients impacted across all age groups. One of the key findings of this current survey was the ongoing issue of minimal awareness of endometriosis symptoms at the time of onset. This finding was consistent across all ethnicities and age groups, with 40%–54% of patients aged 18–45+ years unaware at onset that what they were experiencing was a chronic condition requiring ongoing care and support. A lack of awareness of endometriosis symptoms often leads to delays in diagnosis, and in this cohort, lack of awareness was responsible for a significant two‐year increase in diagnostic delay. When participants were asked how they first became aware of their disease, the most common source of information was via friends and family, followed by HCPs. From there, most patients accessed further information about endometriosis from online sources. While the online resources are relatively easy to access, there have been major concerns about the accuracy of the information offered [ 11 ]. These online resources are often serviced by non‐accredited individuals with minimal to no training in the field, and whose information can lack medical or scientific evidence [ 12 ]. Despite these concerns, online spaces are also important environments for patients to find solace, community and support [ 13 ], and where both those with lived experience and HCPs can share useful information [ 14 ]. The importance and value of information regarding the diverse range of endometriosis symptoms was highlighted by respondents. Endometriosis patients can present with extremely diverse symptomology including chronic pelvic pain, painful periods and intercourse, infertility [ 15 ], cold intolerance [ 16 ], leg pain, allergies, and fatigue [ 17 ]. Many patients experience shame, distress, symptom dismissal, ridicule and normalisation of their pain due to the lack of visible symptoms leading many to suffer in silence [ 6 , 18 , 19 , 20 ]. To improve endometriosis symptom awareness, effective education around what is considered ‘normal’ and ‘abnormal’ menstruation must be developed. While menstruation is a non‐pathological process, it has been shamed and stigmatised for millennia and education around what is ‘normal’ menstruation is rudimentary at best. By creating safe spaces to openly discuss individual experiences and determine what is ab/normal for everyone, the resulting clarity around disease states like endometriosis will significantly reduce diagnostic delays. This challenge may explain why many participants selected explaining signs of ‘abnormal’ menstruation as their top priority for endometriosis‐related resources. Overall, new online and medical resources should be co‐designed with patients to ensure relevance and accessibility, with clinicians and researchers to ensure accuracy and applicability, and with members of minoritised groups (such as Māori and LGBTQIA+ representatives) to ensure suitability to the hugely diverse experiences of the endometriosis community. The limitations of this study are related to the recruitment process of participants from patient organisations and are similar to those reported previously [ 21 ]. Since respondents opted in, a bias towards individuals with greater dissatisfaction towards their care is possible [ 22 ]. Similarly, since participation was not associated with a medical setting, official endometriosis diagnoses could not be validated. The strengths of this study include the high sample size and diverse composition of participants with a wide range of age groups and ethnic backgrounds.

Endometriosis is a challenging condition to diagnose and manage from both a patient and a medical practitioner perspective. In this study, 657 Aotearoa New Zealand endometriosis patients highlighted a dearth of endometriosis awareness at symptom onset, and that this absence of knowledge and understanding had a significant contribution to their diagnostic delay from symptom onset. These patients shared the value they saw in resources for the general public, for students, and for endometriosis patients, which highlight the diversity and heterogeneity of endometriosis symptom presentation. Participants viewed that this may allow for improved surveillance for the condition to allow earlier recognition and diagnosis. The questionnaire used in this article is available as Data S1.

Knowledge and awareness of endometriosis, a chronic condition characterised by extra‐uterine endometrial‐like tissue [ 1 ], is generally limited. In a cohort of young, presumed female at birth (PFAB) Australians, 52% knew of endometriosis, with the majority first hearing about endometriosis from friends [ 2 ]. In a cohort of 200 Polish PFAB individuals, endometriosis knowledge was predominantly gained from the internet (45.0%) and the experiences of others (36.1%) [ 3 ]. In prior Aotearoa New Zealand (NZ) studies, the original source of endometriosis awareness was primarily the internet, healthcare practitioners (HCPs), or from family/whānau [ 4 ]. The endometriosis patient's social environment can also affect endometriosis awareness and knowledge. In an Austrian and German cohort of endometriosis patients ( N  = 171) a patient's mother viewing menstruation as a negative event increased delay to diagnosis significantly from a median of 9.7 years to 14.6 years [ 5 ]. This increase likely relates to patients avoiding speaking of their experiences or seeking medical support as a result of a negative framing of menstrual health as an inherently taboo, shameful, or embarrassing topic [ 3 , 5 ]. Awareness and understanding of endometriosis, and where that information comes from, can have fundamental impacts on the journeys of endometriosis patients. In a prior NZ cohort, there was a subset of patients who highlighted they had learnt misinformation about endometriosis which they felt had delayed their journey to diagnosis [ 6 ]. There are elements of endometriosis that patients can struggle to identify as endometriosis‐related without prior knowledge or the support of the awareness of others, such as that certain symptoms, including pain, may only appear cyclically [ 7 ]. In a Canadian study of the exposure of high school students to information about endometriosis and menstrual health, the authors found the intervention not only improved understanding of the condition but also increased the perceived comfort and acceptability of discussing menstrual health [ 8 ]. The sum of these findings indicates the importance of menstruation education, endometriosis awareness, and the reduction of associated taboos for all individuals, such as parents and practitioners, not only for endometriosis patients themselves. This study's purpose was to evaluate NZ endometriosis patient perceptions of the availability of endometriosis information, their awareness of and sources of knowledge about endometriosis, and resources they identified as beneficial to develop.

K.E. is the current research project co‐ordinator of Endometriosis New Zealand.

The questionnaire (Data S1) was developed through incorporation of questions regarding patient knowledge from previous NZ studies [ 4 , 6 ]. Further questions were designed to assess which resources are important and needed. This study was approved by the University of Canterbury Human Research Ethics Committee (2025‐38/LR‐PS) and the Ngāi Tahu Consultation and Engagement Group. The survey was distributed (1st–15th of July 2025) in two ways. First, the survey was available as an anonymous link distributed by Endometriosis New Zealand through their social media and opt‐in email database. Secondly, unique links were sent to 750 individuals who had signed up to participate in an endometriosis impact survey series. Individuals were eligible to participate if they were aged 18+, lived in NZ, and self‐reported clinically suspected or confirmed endometriosis with no further exclusion criteria. Diagnostic delay data was assessed by Mann–Whitney U test in GraphPad (version 9). All other statistical analysis was conducted in Qualtrics StatsIQ with a confidence level of 95%. Comparisons between categorical groups were done with Pearson's χ 2 Test with a null hypothesis of no difference between groups. Categorical data are presented as proportions, and continuous data as the median and 95% confidence interval of the median. The process undertaken to analyse open‐text qualitative data was inductive, semantic, thematic coding. The open‐text questions analysed were questions about how participants had accessed resources about endometriosis, and the ‘number one thing’ that (A) the general public, (B) students in school, and (C) endometriosis patients needed resources about regarding endometriosis. If multiple answers for the ‘number one thing’ were given by a participant, only their first answer was coded and included in the analysis. In short, for each question analysed, after familiarisation with all statements, preliminary semantic codes were inductively generated and tagged to each answer in Qualtrics TextIQ based upon the explicit wording of the participant answers. Codes were iteratively clustered in an inductive thematic manner until all remaining themes and sub‐themes were considered to be distinct [ 9 ]. The coding author is a cisgender Pākehā/NZ European woman with a background in qualitative research who has personally navigated endometriosis care in NZ.

Data S1: Impact of awareness of endometriosis.