The case for inclusive endometriosis care to address barriers for transmasculine endometriosis patients in Canada

What would endometriosis care look like if it were not organized around binary gender categories and reproductive normativity? To address this gap in accessing care, this editorial advocates for a patient-centered approach which consciously de-genders endometriosis and implements tailored management strategies in accordance with individuals’ gender affirmation treatment - what I coin as Inclusive Endometriosis Care (IEC). Endometriosis is a multi-system, chronic, systemic inflammation disease (Jeffrey et al., Citation2024) in which tissue similar to uterine lining appears in other areas of the body, often reacting to hormonal changes and leading to symptoms such as pelvic discomfort, excessive monthly flow, and infertility (Kaltsas et al., Citation2024). Transmasculine individuals with endometriosis face a double-burden of managing endometriosis on top of social stigmatization, discrimination, and culturally incompetent healthcare providers (Kaltsas et al., Citation2024). Dominant treatment models have been shaped by what I term as uterine dominance, assumptions that not only center the uterus but also prioritize fertility, womanhood, and binary sex/gender categories. These frameworks marginalize and erase those whose experiences fall outside of the normative construct of ‘female reproductive health,’ including transmasculine, non-binary, and other gender-diverse individuals. Patient-centered care advocates for treatments that are unique to every individual and created in collaboration between the patient and the provider, and so therefore, this editorial argues that explicitly trans inclusive healthcare rooted in patient-centered care practices can contest not only the gendered norms that have long been legitimized through cultural framings, but also the racial, colonial, class-based, and cisnormative norms that compound exclusion. Endometriosis is estimated to affect 1 in 10 peoples assigned female at birth (AFAB) in Canada, although the exact prevalence is unknown due to rapid rates of under-diagnosis. This is partially due to the wide range of potential symptoms—they may include pelvic pain, heavy periods, gastrointestinal distress, urinary problems, and fatigue. These symptoms become more niche if endometriosis lesions are found on other organs, such as the lungs, the appendix, or the brain, and this can cause delays if doctors are uninformed of such disease variances. Endometriosis often takes five to ten years to diagnose, with some patients seeking care for decades before receiving recognition or treatment. Despite there already being a substantial barrier to accessing care for cisgender patients, transgender and gender diverse peoples presumed female at birth experience gynecological conditions, such as chronic pelvic pain (CPP), at elevated rates, estimated between 51% and 72% of this population, compared to rates of up to 26.6% in cisgender women (Jeffrey et al., Citation2024). The prevalence of diagnosis of endometriosis in Canada is estimated by Singh et al. (Citation2020) to be up to 7%, equating to half a million individuals, with a reported 5.4-year average diagnostic delay. Importantly, because of this diagnostic delay, it is more than likely that significantly more individuals with endometriosis in Canada are in the process of, or have not yet attained an official diagnosis. By comparison, a similarly sized study in the U.S. reports a rate of 6.6%, and a previous study of Canadian AFAB individuals reported 5.2% (Singh et al., Citation2020). Emphasizing the time and financial burden that comes with managing endometriosis, Singh et al. (Citation2020) note that, on average, participants reported consulting three different physicians about endometriosis prior to gaining a diagnosis. Individuals with chronic pelvic pain (CPP), whether diagnosed with endometriosis or still in the process of seeking diagnosis, report significantly lower quality of life than those without CPP. Yet, the impacts of CPP are not felt equally. The dominant imaginary of endometriosis is built on what I term as ‘uterine dominance,’ the belief that endometriosis is exclusively a condition of the uterus, and by extension, of cisgender women. This imaginary rests on both cisnormative and reproductive essentialist logics: it assumes that the uterus is the central site of endometriosis, that only those who menstruate can experience the illness, and that its primary consequences are infertility and impaired reproductive function. It is an extension of medical cisnormativity, which operates not only at the level of individual bias but also at the structural and administrative level through intake forms, diagnostic algorithms, insurance coding, and clinical guidelines. In endometriosis care, this takes the form of gendered patient materials, clinic signage, and expectations around gender presentation. This imaginary is also visible in research and funding. Studies on endometriosis overwhelmingly focus on cisgender women and heterosexual reproductive concerns. Fertility clinics and OB/GYN practices remain the primary sites of endometriosis diagnosis and treatment, reinforcing the idea that its medical relevance lies in reproduction. As a result, transmasculine individuals who experience endometriosis are excluded from both research and care. In Canada, these patterns are particularly pronounced in publicly funded healthcare environments, where gatekeeping is often justified by bureaucratic limitations. Importantly, the prioritization of the uterus as a clinical endpoint in endometriosis care reflects a cisnormative and pronatalist orientation within Canadian medicine that privileges the potential for gestation over the lived realities of chronic pain. The rhetorical and clinical dominance of the uterus renders individuals who were born without one, or who have had theirs surgically removed, invisible within diagnostic and treatment frameworks (Adler et al., Citation2024). Moreover, it reinforces the false notion that endometriosis is strictly a disease of the uterus. In reality, endometrial-like lesions can appear on multiple organs outside the uterus, and a hysterectomy does not guarantee remission (Jaiswal et al., Citation2024). The potentials of patient-centred care Considered an ‘invisible population,’ transmasculine people with endometriosis may appear sparsely in medical literature, but the acknowledgement that endometriosis should be recognized as a significant issue for transgender men is commonplace (Adler et al., Citation2024). Cisgender women face severe diagnostic delays when attempting to access care, but transmasculine individuals often face even longer delays due to barriers such as provider bias, misgendering, and a lack of inclusive clinical protocols. These factors compound upon existing mental health challenges, especially for those navigating multiple forms of marginalization. As Adler et al. (Citation2024) note, this poorer access is driven by systemic factors such as the absence of trans-specific training in medical education, the persistence of cisnormative assumptions in diagnostic processes, and widespread experiences of discrimination, misgendering, and gatekeeping in clinical encounters. A survey conducted by the National Center for Transgender Equality revealed that 33% of transgender individuals reported negative experiences with healthcare providers, while 23% avoided receiving necessary medical care due to fear of discrimination (Adler et al., Citation2024). Research demonstrates that transmasculine patients report exposure to mistreatment, such as gender insensitivity, discomfort, denied services, substandard care, verbal abuse, and forced care in healthcare environments (Kaltsas et al., Citation2024). Frecker et al. (Citation2018) demonstrate that trans men’s experiences in accessing gynecological care in Ontario, Canada, can shed light on lived experiences of discrimination and can offer potentials for areas to enact change. 92% of trans men in the study reported feeling anxious about seeking gynecologic care, and 54% had avoided attending gynecologic care settings for such reasons as encountering gendered medical forms, sitting in a waiting room with cis women, being misgendered, and having to educate providers. The most difficult aspect of the visit was the gynecologic exam, with 60% of respondents finding it physically distressing and 75% finding it emotionally distressing (Frecker et al., Citation2018). In Transgender and Gender Diverse People with Endometriosis: A Perspective on Affirming Gynecological Care, Jeffrey et al. (Citation2024) review critical pieces of literature about affirming gynecological care in the context of transgender individuals with endometriosis. Highlighting the alarming commonality of negative healthcare experiences amongst transmasculine patients, this brings authors to emphasize the essential need for gender-affirming care that encompasses more than just hormonal medications and surgeries. Jeffrey et al. (Citation2024) notes that gender-affirming care must involve treating transgender individuals with respect and ensuring proper care is provided without discrimination. This need for high levels of care is extended to gynecological care, and the authors underscore how the assumption that this form of practice is ‘women’s healthcare’ can hinder transmasculine populations from receiving the care they may require and further can result in improper care. Jeffrey et al. (Citation2024) specifically focus on the treatment of endometriosis and highlight that its financial impact may compound the marginalization that transmasculine patients face. Endometriosis is oftentimes not considered as a possible diagnosis for transmasculine individuals due to the assumption that testosterone therapy completely ceases ovarian function and endometrial activity. Yet, it has been found that transgender men predisposed to endometriosis may still have active disease, even when undergoing testosterone treatment (Frecker et al., Citation2018). In a study by Grimstad et al. (Citation2019), the pathologic reports of 94 transgender men who underwent hysterectomy were evaluated. In these reports, an active endometrium was found in most patients at a 69% occurrence rate (Grimstad et al., Citation2019). An active endometrium can result in the continuation of the menstrual cycle, which can manifest as pain or increase the pain that transmasculine individuals may already be experiencing (Ferrando et al., Citation2021). Alongside increased physical pain, a continuation of the menstrual cycle can contribute to feelings of gender dysphoria and a lowered quality of life. Integrating trans and gender diverse medicine as well as important topics such as transphobia and medical bias into the main curriculum can legitimize trans healthcare as a routine part of conventional medicine (Jeffrey et al., Citation2024). At the 1995 Fourth World Conference on Women of the United Nations, it was decided that the needs and preferences of women and their healthcare must be centered and officially became a major global priority (United Nations, Citation1995). Decades later, in their 2009 report Women and Health, the World Health Organization (De, Citation2009) further advanced this argument, resulting in its adoption in 2017 as one of the 17 goals for the United Nations 2030 Agenda for Sustainable Development (United Nations, Citation2015). Montague et al. (Citation2017) characterize methods of patient-centered care as being inclusive of timely access to care, a perceived level of professional respect and care shown toward patients, decisions made in collaboration between provider and patient, and care focused on needs rather than financial incentives. This paper argues that patient-centered care holds promise as a method to address the marginalization and erasure within health care of transmasculine and gender diverse individuals living with endometriosis. Patient-centered care has been put forward as an approach to healthcare that is respectful of and responsive to individual patient preferences, needs and values, and ensures that patient values guide all clinical decisions (Ramlakhan et al., Citation2019). By compiling an extensive literature review on the use and outcomes of patient-centered care in Canada, Ramlakhan et al. (Citation2019) found that patient-centered care was positively correlated with quality of life, care satisfaction, disease understanding, pain reduction, and functional recovery. The authors found that despite the benefits of patient-centered care, many patients do not receive it, and furthermore, patients perceived as women are less likely than men to experience it. This problematic is identified and interrogated by Vercellini et al (Citation2018) in their article Management of Endometriosis: Toward Value-Based, Cost-Effective, Affordable Care. The authors argue that endometriosis care should not follow a one-size-fits-all model but must instead be tailored to patients’ individual needs and personal priorities. Emphasis on patient autonomy is especially critical in the treatment of endometriosis, a condition long governed by cisnormative and pronatalist assumptions that prioritize fertility preservation and uterine function over the lived realities of pain, disability, and disruption to daily life. The question of what a patient wants from their care—whether pain relief, hormonal stabilization, or surgical intervention—remains largely under-asked in clinical encounters. Inclusive Endometriosis Care (IEC) is proposed as an educational tool for resisting exclusionary medical norms, as it is argued that healthcare transformation can begin by disrupting the very language and assumptions that shape how endometriosis is communicated and understood. Drawing on patient-centered care principles and the work of cited scholars such as Ramlakhan et al. (Citation2019) and Montague et al. (Citation2017), I position Inclusive Endometriosis Care (IEC) as a critical feminist intervention aimed at making healthcare more accessible for transmasculine and gender-diverse people. It goes against the use of binary gendered language in order to prevent the construction of endometriosis as a ‘women’s and girls disease.’ Practitioners must avoid conflating reproduction, menstruation, or the presence of a uterus/ovaries with endometriosis. One way in which this could be implemented is through the widespread use of educational pamphlets, which would align with one of the priority domains of patient-centered care - the open exchange of information between professionals and patients - and enhances timely access to information by people living with endometriosis. Any work under the Inclusive Endometriosis Care (IEC) umbrella must also follow the recommendations of Jeffrey et al. (Citation2024), who outline four changes that must be made when creating intersectional endometriosis care materials: Care should be taken to avoid binary constructions of sex and gender, the conflation of sex and gender, and the use of pathologizing and stigmatizing language in trans and gender diverse healthcare. An overemphasis on biomedical framing dismisses important sociocultural factors in the construction of sex and gender, and contributes to the stigmatization and pathologizing of trans and gender diverse medical care In the niche of gynecology, curriculum should use gender inclusive imagery and language (i.e. language which is self-determined by trans and gender diverse individuals), gender neutral language (i.e. people with endometriosis) or additive language (i.e. women and trans and gender diverse people with endometriosis) In line with this, informal reference of gynecology/reproductive medicine as ‘women’s health’ should be avoided and replaced with gender neutral language (gynecology) or additive language (women’s and trans and gender diverse health). Taken together, these are beginning to form the foundational principles of Inclusive Endometriosis Care (IEC), and hold the potential for radical change. By translating intersectional, patient-centered, and gender-affirming frameworks into practical educational tools, Inclusive Endometriosis Care (IEC) would contribute to the broader literature on endometriosis by challenging cisnormative assumptions in healthcare communication and demonstrating how accessible, nonbinary, and socially attuned interventions can expand care for transmasculine and gender-diverse people. This editorial has demonstrated that the exclusion of transmasculine people from endometriosis care is an outcome of the system’s design. From cisnormative assumptions to gendered patient materials, the conditions that produce exclusion are deeply embedded. And yet, change is possible. By understanding these conditions, we open the door to interventions, such as patient-centered care, that have the potential to be transformative. The question, then, is not only what is wrong, but how we begin to build otherwise. Gender Studies, Queen’s University, Kingston, Ontario, Canada [email protected]; [email protected] Disclosure statement No potential conflict of interest was reported by the author(s). Additional information Funding References - Adler, H., Jeffrey, S., Max Ashton, L., Howe, D., O’Shea, M., Hoi, C., Last, L., Wilson-King, G., Bush, D., & Armour, M. (2024). The language of endometriosis prevalence: How can gender inclusivity and accuracy coexist? Women’s Reproductive Health, 12(1), 1–18. https://doi.org/10.1080/23293691.2024.2396312 - De, M. (2009). Women and health: Today’s evidence tomorrow’s agenda. World Health Organization. - Ferrando, C. A., Chapman, G., & Pollard, R. (2021). Preoperative pain symptoms and the incidence of endometriosis in transgender men undergoing hysterectomy for gender affirmation. Journal of Minimally Invasive Gynecology, 28(9), 1579–1584. https://doi.org/10.1016/j.jmig.2021.01.018 - Frecker, H., Scheim, A., Leonardi, M., & Yudin, M. (2018). 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