'I never see anyone like myself represented in discussions about endometriosis': priorities of LGBTQIA + endometriosis patients in New Zealand

Limited information is available regarding the experiences and perspectives of LGBTQIA + patients internationally, and no literature exists for New Zealand. Twenty-eight LGBTQIA + endometriosis patients took part in asynchronous, online text-based discussions about their experiences navigating endometriosis diagnosis and management in Aotearoa New Zealand. Their qualitative responses were coded in an iterative thematic manner. The mean delay to diagnosis of this cohort was 10.2 ± 5.6 years from symptom onset, longer than previously reported delays in Aotearoa New Zealand. Participants shared a strong discomfort with the predominant focus of endometriosis management strategies on penetrative sex and pregnancy, and the sense they were dismissed if prioritising these functions was not their priority. Several potential improvements to current treatment and care for LGBTQIA + endometriosis patients were generally agreed upon by the cohort, including research to better understand a practice approach for managing the symptoms of transmasculine patients; expanding the management strategies for patients who are not prioritising fertility and penetrative sex; improving awareness of LGBTQIA + people and experiences amongst medical practitioners to reduce homophobia, transphobia, misogyny, misgendering and mistreatment in care; and the development of gender-neutral spaces for the support of patients who feel uncomfortable in cisgender women-centric endometriosis spaces.

Up to one in seven people presumed female at birth (PFAB) are expected to have endometriosis, a condition characterised by endometrial-like glands and stroma outside the uterine cavity (Signorile and Baldi Citation2010; AIHW Citation2023). The condition has a wide array of symptoms, including pain during menstruation, ovulation, sex, defaecation, and urination (Ellis, Munro, and Wood Citation2022); infertility (de Ziegler, Borghese, and Chapron Citation2010), fatigue (Ramin-Wright et al. Citation2018); and depression and anxiety (van Barneveld et al. Citation2022). The effects of this disease contribute substantial costs to the individual physically (Armour et al. Citation2020), socially, emotionally (Hunsche et al. Citation2023), and financially (Bell et al. Citation2023), as well as to national economies (Armour et al. Citation2019; Simoens et al. Citation2012). For people with endometriosis, health-related quality of life is significantly diminished in comparison not only to non-symptomatic controls but also control groups with similar symptoms (Nnoaham et al. Citation2011). The diagnosis of endometriosis is challenging, and in New Zealand, it takes an average of 9.7 years from symptom onset for patients to receive a confirmed diagnosis (Ellis and Wood Citation2024). Endometriosis in gay, lesbian and queer individuals There are no differences in the incidence of endometriosis in lesbian or bisexual women compared to heterosexual women (Robinson et al. Citation2017), however, a Brazilian study of 630 lesbians and bisexual individuals indicated they were dissatisfied with the treatment they received from gynaecologists (Paviani et al. Citation2022). There is minimal overall literature available on this topic with no other relevant literature on PubMed (search conducted in May 2024 with search terms ‘endometriosis’ AND ‘lesbian OR bisexual OR gay OR queer’). Gender-diverse and transgender identities Gender-diverse individuals who are PFAB may also identify as a range of identities that may fall under the umbrella terms of transgender, non-binary and/or genderqueer. These identities can be held by individuals with a range of definitions for their identity but may include defining their gender as neither male nor female, having no gender, rejecting binary genders, having different gender identities at different times, or having multiple gender identities at once (Richards et al. Citation2016). According to the 2021 New Zealand Household Economic Survey, 4.4% of the adult population (StatsNZ Citation2022) (approximately 225,394 individuals (StatsNZ Citation2021)) consider themselves part of the LGBTQIA + community, including 5,500 transgender men, 9000 non-binary individuals, 54,700 exclusively gay or lesbian people, and 79,300 bisexual people (StatsNZ Citation2023). People with diverse genders and sexualities (n = 93) have also been shown in a New Zealand cohort to have significantly higher rates of mental illness, depression, thoughts of self-harm and suicide, anxiety, and social exclusion than their cisgender and heterosexual counterparts (n = 2810) (Tan, Wilson, et al. Citation2022). In Aotearoa New Zealand, transgender and transmasculine patients have high rates of unmet health needs (Tan, Byrne, et al. Citation2022). Willingness amongst medical providers to provide care to transmasculine individuals is related more to personal biases and experiences, than to training and knowledge (Shires et al. Citation2019). Transgender men, female-to-male transgender individuals, or transmasculine individuals, are people who were PFAB, but identify as male, or wish to present with a masculine gender expression and may seek masculinisation therapies (Irwig Citation2017). Some of these individuals choose to take testosterone therapies, which can result in amenorrhoea (cessation of menstruation) (Ferrando Citation2022; Grimstad et al. Citation2021; Grynberg et al. Citation2010; Irwig Citation2017), or use hormonal contraception for menstrual suppression (Kanj et al. Citation2019), which is also a common aim in endometriosis treatment therapies (Valle and Sciarra Citation2003). Testosterone treatments can also reduce negative mental health impacts for these individuals with reduced depression and anxiety and improved quality of life (Baker et al. Citation2021). Furthermore, these therapies can increase facial and body hair, reduce the pitch of the voice, increase clitoral size, reduce vaginal epithelium thickness, and reduce the concentrations of oestradiol, luteinising hormone, follicle-stimulating hormone and prolactin (Irwig Citation2017). Endometriosis in gender-diverse and transgender individuals Studies of the effect of testosterone therapies on the uterus in transgender men have been variable in the identified activity, composition, and structure of the endometrium and myometrium (Grynberg et al. Citation2010; Khalifa et al. Citation2019; Loverro et al. Citation2016; Perrone et al. Citation2009) but, the endometrium generally appears to remain biologically active (Grimstad et al. Citation2019). The first study to characterise endometriosis in transmasculine patients was in 2020, which highlighted that even with testosterone therapy, endometriosis symptoms could continue (Shim, Laufer, and Grimstad Citation2020). Another common gender-affirming treatment is a hysterectomy (partial or total removal of the uterus) (Carbonnel et al. Citation2021; Ferrando Citation2022), which is typically associated with positive outcomes for endometriosis patients (As-Sanie et al. Citation2021; Grundström et al. Citation2018; Saleeb et al. Citation2023), allowing for concurrent gender affirmation and endometriosis treatment (Batchelor and Vasquez Citation2023). In a US study including 34 transgender men with pelvic pain, 32.3% had endometriosis at hysterectomy, while 21.9% of the 33 transgender men without pelvic pain also had endometriosis diagnosed at hysterectomy (Ferrando, Chapman, and Pollard Citation2021). In an international, qualitative study of transgender and non-binary endometriosis patient experiences, the journeys of patients were rife with medical gaslighting, misgendering, and discrimination, altering their sense of safety and well-being when accessing medical care for endometriosis (Eder and Roomaney Citation2023). There are preliminary indications that the endometriosis journeys of trans and non-binary individuals with endometriosis include additional barriers when compared to those faced by cisgender patients during already long and difficult pathways (Jeffrey et al. Citation2024). Endometriosis in intersex individuals There is little to no literature regarding the experiences of intersex endometriosis patients, but the presence of endometriosis in individuals with Mayer-Rokitansky-Kuster-Hauser syndrome (under-development or absence of the vagina and uterus) (Elliott, Abduljabar, and Morris Citation2011) is used to rebuke the retrograde menstruation theory of endometriosis and support the coelomic metaplasia theory (Yan, Zhao, and Qin Citation2011), although this perspective is disputed (Konrad et al. Citation2019). Purpose of this study There is minimal literature about the experiences of sexual and gender minorities and their experiences with their symptoms, diagnosis and treatment of endometriosis, and no data available for New Zealand. Previous studies have assessed the experiences of endometriosis patients in mixed cohorts in New Zealand (Ellis, Munro, and Wood Citation2022; Ellis, Munro, and Wood Citation2023; Tewhaiti-Smith et al. Citation2022), and in Māori and Pasifika cohorts (Ellis et al. Citation2024). The purpose of this study was to assess the experiences of endometriosis patients who identify as LGBTQIA + in Aotearoa New Zealand.

and materials Details of methods to collect and assess data in this study are published elsewhere. In brief, participants were recruited to participate through snowball social media advertising, with interested participants contacting the first author to register their intent. Participants had to self-identify as LGBTQIA+, self-report a confirmed surgical/radiological diagnosis of endometriosis (‘confirmed’, with or without symptoms, lesions present), or clinically suspected endometriosis (‘working’, symptoms present/lesions presence unconfirmed), reside in New Zealand and be aged 18+. Thirty-eight individuals expressed interest, 29 returned consent forms, and 28 completed the discussion and had their data included. Questions 3–4 and 29–30 from the 2023 New Zealand census regarding sexuality, gender identity and intersex status were used to collect information regarding participants’ identities (StatsNZ Citation2023). Participants were assigned pseudonyms (e.g. Cadmium, Orchid), and following the return of their signed consent form, they were supplied with a unique URL pre-loaded with their pseudonym to maintain anonymity. The study was hosted on VisionsLive, an online bulletin board platform. The participants answered 46 questions, 26 were open-ended, and 20 were single or multiple-choice polls (details are available from the corresponding author upon request), with the open-ended qualitative results discussed in this manuscript. The study was live for five days, during which time the participants could log on by clicking on their unique URL. The discussions were asynchronous, with participants logging on at times that suited them to answer questions, read others’ answers, and respond to engage in further discussion. Before answering each question, the answers from prior participants were hidden and only revealed once the participant submitted their answer. This shielding of the answers of other participants before answering helped avoid the possibility of groupthink. The qualitative data was analysed in an inductive, thematic manner (Terry et al. Citation2017) with the aid of NVivo (Version 14.23.0). The thematic analysis was conducted by first familiarisation with the data set, in this case, a version of the transcript comprised of the quotations of all answers and responses and devoid of the quantitative answers. Secondly, the first author developed semantic codes centred around the explicit word choice and explanations of the participants e.g. misgendering. Two subsequent rounds of coding utilised the original codebook with further development, definition, and refinement of codes. Finally, the codes were iteratively clustered and reorganised into cohesive themes and sub-themes that reflected the over-arching experiences and perspectives represented by the codes (). Quotes are presented with the acronyms defined in , with participant sexuality (e.g. G/L for gay/lesbian), gender identity (e.g. NB for non-binary), age range, and diagnosis type (i.e. confirmed or working diagnosis). This study was approved by the University of Canterbury Human Research Ethics Committee (Ref: HREC 2023/24).

and discussion Cohort characteristics Study participants had a range of experiences and identities (). All identified with an identity other than heterosexual, and half identified with an identity other than cisgender. The average delay from symptom onset to diagnosis was 10.2 ± 5.6 years for both confirmed and clinically suspected endometriosis diagnoses, longer than a prior NZ study (7.9 ± 5.1 years) with a cohort of 50 patients amongst whom none self-identified as transgender, and only one self-identified as LGBTQIA+ (Ellis, Munro, and Wood Citation2022). Penetration and pregnancy One of the most common experiences among members of this LGBTQIA + cohort was a sense that interactions with medical practitioners frequently boiled down to two things: penetration and pregnancy. As articulated by one participant (G/L-CF/W-(31–35)-confirmed): ‘I had been told by one gynaecologist who was not willing to investigate my pain that: Even if I had endometriosis, it would not matter in a same-sex relationship because fertility and pain-free sex are not priorities.’ Participants viewed the centrality of penetration and pregnancy in medical encounters to be surrounded by cis- and heteronormative assumptions about relationships, sex, and their desires for the future. Patients who had been in relationships with both male and female partners highlighted differences they identified in their care when they presented with these partners for medical appointments. Reports included having their cis-male partners’ perspectives valued over their own, their relationships with same-sex partners being undervalued, and their doctors’ overall interest in their care being highest while in heterosexual relationships: ‘I came out as a lesbian at the end of last year, after being in a relationship with a man for 4 years. I found that I was not taken seriously when asked general questions, and the questions were aimed towards heterosexual people.’ (G/L-CF/W-(18–24)-confirmed) ‘In terms of my doctor being less worried about my experiences, based on the (incorrect) assumption that being in a same-sex relationship = no penetrative sex anymore. It felt like that was the pain she was most worried about when I was in my [heterosexual] relationship… The majority of medical professionals I’ve dealt with since coming out are now very awkward and detached in their manner (in comparison to how they were with me before I came out).’ (Q-CF/W-(31–35)-confirmed) Emphasis on penetrative sex Penetrative sex was perceived as being considered by medical practitioners to be a key barrier to living a functioning life as an endometriosis patient. Many LGBTQIA + patients, found that the automatic assumption made by clinicians was that if they were sexually active, they would be in a relationship with a cisgender man, that this sexual relationship would revolve around penile-vaginal penetrative sex, and that treatment should be focused on alleviating this dyspareunia to restore sexual function. When participants did not consider penetrative sex to either be an issue for themselvs, or a focus for their endometriosis management journey, the response from their medical practitioner could take two main forms. First, they might find their medical practitioner no longer seemed to consider their issues important, or second they might find their medical practitioner assumed that penetrative sex would not occur in a same-sex relationship: ‘I once had a medical professional dismiss pain with penetrative sex as I was in a relationship with a woman. I guess lesbians just do not ever use their vaginas?’ (G/L-CF/W-I-(25–30)-working) ‘Any questions about sex always assume any sexual partner is a cis dude whenever they asked about pain during intercourse.’ (B-P-NB-(25–30)-confirmed) ‘The gynaecologist believed I did not have [endometriosis] because I did not have pain with sex, despite me saying I am only in same-sex relationships and did not have penetration with sex.’ (G/L-CF/W-(31–35)-confirmed) Care of gay, lesbian, and queer patients The minority of participants who identified their sexuality had not impacted their interactions within the medical setting gave reasons for this that included comfort with their identity, having inclusive doctors, coming out after receiving their diagnosis, and not actively disclosing their identity to medical practitioners. For example, (B-CF/W-(31–35)-working) said, ‘I am pretty straight passing so I do not think it would have been considered by my health practitioners.’ For those who identified that the response of medical practitioners to their sexual identity had been a barrier or source of mistreatment, the most common experiences were an inability to discuss their identity, interrogation about and dismissal of their identity, and hetero-normative assumptions impacting their perception of the care received. Hetero-normative assumptions Experiences in medical care were varied, but key experiences included assumptions their same-sex partner was just a friend, their partners would be cis-men, they must be heterosexual themselves, and because they were sexually active, there was a risk they could be pregnant. There was a key sentiment that endometriosis care, and care from medical practitioners in general, was geared towards heterosexual patients in heterosexual relationships. Participant Q-CF/W-(31–35)-confirmed, ‘The line of questioning, and the forms you need to fill in are all geared towards cis-women in [heterosexual] relationships. The lack of consideration for, and understanding of, Rainbow experiences is very obvious.’ Such assumptions, and the language that reinforced these assumptions, made participants feel awkward, side-lined, or unsafe. There was a sense that constantly having to explain and justify their identities to medical practitioners could be both frustrating and upsetting, and that rejecting cis and heteronormative assumptions could prompt a sense that their practitioner now treated them with greater awkwardness: ‘Every doctor and OBGYN I have been to has assumed I am heterosexual and [cisgender] which has made me unsure if I was safe to come out.’ (G/L-(18–24)-confirmed) ‘No. Definitely not.’ My partner was right by my side, we were holding hands, I said we had been together 10 years, and that I also have a Mirena in situ. That should be that, right? THEY SAID, and I quote: ‘I am really sorry, we still need a urine sample just to make sure.’ I was mortified.’ Dismissal of sexuality Many of the interactions identified as creating barriers to accessing care involved blatant homophobia from their practitioner. In a particularly clear case, a participant (G/L-B-Q-NB-(25–30)-working) who wished to remain child-free, had a medical practitioner deny their desired treatment and write ‘in my official medical notes that I was ‘adamantly opposed to pregnancy’ and ‘convinced she is gay’ and ‘currently refusing male partners’ along with a paragraph of the most unhinged misogyny and homophobia I have ever read.’ The influence of medical practitioners making participants uncomfortable through comments or behaviours was wide-reaching as it could make participants feel unsafe accessing care presently and/or influence later attempts to access treatment or support. With the incorporation of bias in communications with some patients by a range of medical practitioners, participants could feel unheard, ostracised, and abused by interactions with the medical health system. These experiences could also convince individuals it was better to stay closeted to their practitioners. For example, (Q-P-NB-Genderqueer-36+-confirmed) said, ‘I am not particularly ‘out’ with my healthcare providers, which is really sad’, and (B-Q-CF/W-(25–30)-confirmed) said, ‘[I have not faced barriers] because I have never disclosed my sexuality to them.’ Care of gender-diverse and transgender patients Endometriosis is a women’s disease Amongst gender-diverse, non-binary and transmasculine participants, there was a strong sense that the characterisation of endometriosis as a ‘women’s disease’ made it harder for them to access care, as the hyper-femininity associated with endometriosis discourse, imagery and information could make them feel ostracised. This predominant characterisation of the disease, and its relationship to female reproductive healthcare, made participants feel that endometriosis care becomes a (G/L-B-Q-NB-(25–30)-working) ‘centre for misogyny, transphobia and homophobia all at once.’ ‘Having a pain that is so associated with womanhood was hard and reinforced the idea that something was wrong with me/my body. The pain of being transgender. To me [endometriosis] is very much associated with my identity as [transgender].’ (B-TM-(25–30)-working) ‘Not so much the actual pain or having [the] disease itself [is dysphoria related], rather the language and spaces used for endometriosis: ‘Women’s health centre’, ‘female birth control’, talk of fertility and pregnancy, misgendering, etcetera.’ (G/L-TM-NB-(18–24)-working) Misgendering Even for participants who did not feel gender dysphoria as a result of their symptoms, the predominant use of cis-gendered language in endometriosis healthcare and the focus of knowledge around cisgender patient experiences and priorities could create a barrier in not only accessing medical care, but also in seeking support from patient spaces and contributing to endometriosis discussions. Misgendering made some participants feel no effort would ever be made to accommodate their lived experiences and identities within medical spaces. and that they would always be othered and not be respected as individuals with bodily autonomy. ‘In general, I have a lot of shame about [endometriosis], it feels like my body is a betrayal to my existence. The symptoms I have can give me awful gender dysphoria but that is also tied to [endometriosis] being so stuck in the gender binary. The language is very women-centric which contributes to feelings of isolation and otherness.’ (Q-NB-(31–35)-confirmed) ‘I just wished that the healthcare professionals I have encountered understood how to use they/them pronouns and did not talk about my experiences of [endometriosis] as being women’s experiences.’ (B-Q-NB-(25–30)-confirmed) Endometriosis and gender dysphoria Gender dysphoria can be considered a desire to alter or remove primary and/or secondary sex characteristics due to the incongruence of these features to the individual’s gender identity (Nokoff Citation2022). In this cohort, gender dysphoria could relate to endometriosis, or be completely unrelated. Those who did not feel endometriosis influenced their gender dysphoria, either did not generally have bottom or-menstrual related dysphoria (related to the vulva, and/or vagina, and/or uterus, and/or menstrual period) or had relationships with their body and gender dysphoria that meant endometriosis did not influence their experiences of gender identity. Ways in which endometriosis could exacerbate feelings of gender dysphoria for some participants included the feminising nature of some treatments, and the awareness of female reproductive-related organs and processes that can come from some symptoms and treatments (). Conversely, for other participants, endometriosis reinforced the sense of disconnect between their identity and body. Endometriosis influencing gender-affirming treatment While there was not an overall sense that endometriosis had created barriers to accessing gender-affirming treatments, there were experiences of endometriosis influencing priorities around transition. Some gender-diverse participants found having surgical endometriosis treatment had made them reassess their priorities, or had put them off having surgical procedures due to difficulties with recovery: ‘I have also considered top surgery (mastectomy to remove the chest tissue) but my experience of [endometriosis] surgery recovery being so difficult has put me off.’ (B-Q-NB-(25–30)-confirmed) ‘[Endometriosis] definitely shifted my priorities, as I would have had top surgery by now if I did not have to deal with [endometriosis] but getting a [hysterectomy] became my top priority goal, not as a means to transition, but to find an end to the pain. I can say [endometriosis] definitely delayed top surgery by several years as I did not want to juggle two surgeries at once, so I have put top surgery on the back burner.’ (B-TM-(25–30)-working) Dismissal of bodily autonomy Dismissal has been discussed previously in a mixed New Zealand endometriosis patient cohort (N = 50) adopting the same methods as this study. In that cohort, dismissal and instalment of doubt were part of a process of normalisation of menstrual distress. This resulted in the downplaying of patient experiences as over-reactive, or pain fabrication, rather than patients receiving validation, support, and a pathway to pain management. The highlighting of dismissal in patient journeys was associated with a significant increase in diagnostic delay (Ellis, Munro, and Wood Citation2023). In this LGBTQIA + cohort, there was an additional dismissal process participants faced in their efforts to access medical care. Behaviours undermining or questioning the right of individuals to bodily autonomy not only influenced the relationship between the participant and medical practitioner but also the participant’s overall sense they would be safe and respected while trying to access medical care. The effect on participants’ psyche could be severe, as (Q-NB-(31–35)-confirmed): ‘any time I was in a doctor’s office I felt like my body was theirs and not mine.’ In this cohort, the cases associated with the dismissal of bodily autonomy are summarised in . Priorities for the future Development of best practice guidelines One of the transgender participants (B-Q-TM-I-(25–30)-working) made it clear that the, ‘lack of knowledge of trans-specific healthcare [and endometriosis] presentation has created a barrier’ and ‘endometriosis for transgender men is so unknown… that we [get treated] like lab rats, kind of unknown to doctors’ (B-Q-TM-NB-(31–35)-working). Participants highlighted when they tried to navigate accessing methods to manage and treat their endometriosis symptoms there was a lack of understanding of the interactions of gender-affirming methods and endometriosis-related medications. For example (G/L-NB-(31–35)-confirmed), ‘When I started hormone treatment, neither my trans health doctor nor my [endometriosis] specialist could tell me how it was going to work together. I was already taking birth control pills to stop my periods which of course affects hormones, and no one could tell me if I should stop taking them or if it would change how the hormones worked… it was a lot of “we will have to see how it goes…”’ These sentiments could make transmasculine patients feel othered, as unknown entities who were treated like ‘guinea pigs’ or ‘lab rats’ and faced uncertainty in already challenging medical journeys. It reinforced the sentiment that endometriosis care was not a safe place for these participants to access as there is a lack of best-practice knowledge, and no guidelines for the support of endometriosis patients who need to avoid feminising effects, treat endometriosis lesions and symptoms, and avoid deleterious interactions between medications. Concerted efforts are needed to characterise the efficacy and impacts of endometriosis medications on individuals undergoing a range of gender-affirming treatments. Only through a comprehensive understanding of the impacts on the body can best-practice guidelines which serve both patients and practitioners be created. Until then, despite there not being guidelines from the New Zealand Ministry of Health, there are guidelines available from the Professional Association for Transgender Health Aotearoa, including a general practice guideline for hormone therapy initiation endorsed by the Royal New Zealand College of General Practitioners. These guidelines can therefore be learned about and utilised by medical practitioners (PATHA Citation2024). Gender-neutral and LGBTQIA+-friendly endometriosis spaces Another area for improvement that LGBTQIA + individuals with endometriosis in this cohort identified was the creation of more gender-neutral and LGBTQIA+-friendly patient spaces for discussions regarding endometriosis and for accessing care in their endometriosis journeys. Statements were made such as: ‘I understand what ramifications medical sexism has had on endometriosis, but I avoid contributing to discussions on it because I do not want to be seen as encroaching on their space’ (Q-NB-(31–35)-confirmed). This sense, that existing endometriosis patient spaces were not comfortable for them, was not meant as an indictment of the spaces themselves or a suggestion they should be replaced. Instead, participants hoped that additional spaces could be created to cater for people with endometriosis who have different backgrounds, life experiences, and priorities. As articulated clearly by one participant (B-Q-TM-NB-(31–35)-working): ‘Being trans is often a lonely experience, let alone if you suffer from [endometriosis]. Support and community is so important.’ Participants identified how the priorities of other people with endometriosis were not always the same as their own, and discussions and solutions did not always align with the discourse they felt they wanted and needed to participate in. For example, one participant said they worried support spaces would mostly be [cisgender and heterosexual] women who want to talk about fertility issues or sex with their husbands, which I have no interest in as someone who is gay and happily child-free. I love following queer and [non-binary] [endometriosis] activists on Instagram because I love and admire the raw vulnerability of their posts which help to spread awareness of the challenges specifically faced by people with [endometriosis] who also belong to the Rainbow community (Q-CF/W-(31–35)-confirmed). It was made clear how difficult it was to exist in the highly gendered spaces of endometriosis care. Examples that made some participants feel uneasy were the predominance of discourse surrounding fertility and pregnancy, and the cis-normative assumptions inherent in needing to access ‘women’s health centres’, ‘female birth control’ and having a ‘women’s disease’. At the core of the hopes and requests by participants in this cohort, was the desire for patient-centred care that allowed for the acceptance and care of patients in a way that acknowledged and supported their individual needs. Medical practitioner education Lack of information about LGBTQIA + teaching in healthcare curricula is a key issue (Jeffrey et al. Citation2024). It has previously been shown in a 2022 study of fifth-year medical students in New Zealand (n = 71) that despite 94.4% of students considering teaching about LGBTQIA + healthcare important, only 12.8% felt they had received sufficient teaching (Carroll et al. Citation2023). Furthermore, only 39.5% agreed they felt comfortable with the concept of consulting with transgender patients about issues relating to their gender identity, and 38.0% felt they had sufficient teaching about transgender healthcare (Carroll et al. Citation2023). A study of Australian (N = 14) and New Zealand (N = 1) medical school curriculum administrators identified how existing content was mostly focused on sexuality with limited consideration of transgender, gender diverse and intersex patient needs, with only 6 out of 15 schools surveyed teaching about gender-affirming transition (Sanchez et al. Citation2017). In the Australian medical schools, 0–5 hours were dedicated to teaching about LGBTQI health (Sanchez et al. Citation2017). A New Zealand study of staff involved in medical school curriculum oversight (N = 24) found a key limitation to the incorporation of sexuality and gender identity content was time, with 13 out of 24 indicating their curriculum had no LGBTQI content at all (Taylor, Rapsey, and Treharne Citation2018). This deficit has also been identified by students in New Zealand secondary school education (N = 73) (Ellis and Bentham Citation2021). The lack of emphasis on learning how to best support patients with LGBTQIA + identities in Australasian medical schools was clearly reflected in the results of this cohort. There was a strong sense throughout the study that to improve the experiences of LGBTQIA + endometriosis patients, and LGBTQIA + people accessing medical support in general, there needs to be education to support medical practitioners in altering their behaviours. It was thought that educational improvements could influence the quality of endometriosis awareness and knowledge; the sensitivity with which doctors approached LGBTQIA + patients; specific expertise around supporting non-cisgender and non-heterosexual patients through endometriosis journeys; and an overall improved understanding of the factors influencing the lives of LGBTQIA + individuals. It was thought gaining a better understanding of the worldview of gender and sexuality diverse patients would aid medical practitioners in ensuring the healthcare plans for these patients would avoid that trap that (Q-NB, (31–35), confirmed: ‘not cater[ing] to my needs, so even though I have not been turned away, they have drawn up a health care plan that does not align with what I might require. I have only ever been given options that I believe are from a cis/heteronormative approach because they avoid/neglect my gender/sexuality.’

There are limitations associated with this research. These include the fact that participants opted-in to participate which may have skewed the results towards those with extreme experiences who may be more motivated to share those experiences. In addition, participation was anonymous, so neither diagnosis status nor delay to diagnosis could be validated using medical records. The sample size was small, which limits the validity of claims made as well as potential generalisability to a larger population. The results may also not be generalisable as a result that none of the participants in this cohort, unlike prior qualitative endometriosis patients cohorts in New Zealand (Ellis, Munro, and Wood Citation2022; Ellis et al. Citation2024), had had children before participating.

For LGBTQIA + individuals with endometriosis in Aotearoa New Zealand, there can be negative experiences, particularly associated with a focus of care on penetration, pregnancy, and in some cases, feminisation. There is a real risk that interactions with medical practitioners could either make the participants in this study feel unwilling to share their identity or feel unsafe or unsatisfied with the way they are treated because of their identity. There is a need in New Zealand for an emphasis on equitable treatment of LGBTQIA + patients, including through medical education, and the provision of clear, evidence-based guidelines.

The authors thank PATHA, the University of Canterbury Rainbow Advisory Team, Endometriosis New Zealand and Endo Warriors Aotearoa for their support in recruiting for this project. They also thank Sonja Ellis, PATHA, Sage Anatasi, Ari Nicholson, and Family Planning for their input in the design of the questionnaire for this project. Thanks go to Abbey Lissaman for supporting the project and participating in moderating the discussion. Thanks also go to Deborah Munro for her contributions to the development of the base questionnaire in 2022. Disclosure statement No potential conflict of interest was reported by the author(s). Data availability statement Anonymised data supporting the conclusions of this article are available from the corresponding author upon reasonable request. Additional information Funding

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