Methods
A RSLR was conducted to evaluate and analyze existing literature surrounding endometriosis and associated pelvic pain experiences among TGDN individuals’ AFAB. This review aimed to explore evidence regarding existing treatment modalities and ascertain barriers to accessing appropriate healthcare and support. The review began with a clearly defined research question developed through a PICO approach, a commonly used approach in evidence-based healthcare research which seeks to define the Population, Intervention, Comparison, and Outcomes relevant to the research aim (McGill, Citationn.d.). Inclusion and exclusion criteria were systematically developed and refined through a critical appraisal process to determine study eligibility. A search was conducted on December 12, 2024, across four databases (Web of Science, PubMed, Scopus, and ProQuest) and results were presented following PRISMA’s three-stage process, which can be seen in (Page et al., Citation2021). All article titles and abstracts were screened, and suitable articles underwent a critical appraisal following The Joanna Briggs Institute (JBI) Critical Appraisal Tool (Joanna, Citation2020).
The authors of this article comprise of an interdisciplinary research team with expertise in menstrual cycle physiology, sexual health, gender studies, healthcare, and clinical/health psychology. As researchers and professionals engaged in trans health, rights and advocacy, as well as menstrual cycle-related research, we acknowledge the systemic barriers that TGDN people experience in accessing competent, gender-affirming healthcare. Our research team includes individuals with diverse lived experiences related to gender, including non-binary and cisgender experiences, and professional/clinical backgrounds working with diverse individuals within sexual and reproductive health. This informs our critical approach to examining the gaps in care and treatment for TGDN individuals with endometriosis and pelvic pain. We recognize the urgent need for improved healthcare practices and seek to contribute to the growing body of literature advocating for better, evidence-based, and more inclusive, equitable, and affirming medical care.
Review question
The following research question was developed to drive this RSLR: “What does existing literature reveal about the management, treatment, and lived experiences of endometriosis and associated pelvic pain among transgender, gender diverse, and non-binary people?”.
Inclusion/exclusion criteria
No specific date or geographical limits were placed on the search, allowing for a broad and inclusive exploration of available literature. However, it should be noted that as an emerging topic of research, most studies investigating endometriosis in TGDN populations have been published within the past five years. The following inclusion criteria were applied: (1) peer-reviewed studies reporting on empirical data that investigates TGDN individuals experiencing endometriosis and/or chronic pelvic pain which is atypical of expected menstrual discomfort; (2) studies published in English; and (3) studies with full text available. The following exclusion criteria were implemented: (1) studies that do not provide full text access; (2) research focusing solely on cisgender individuals without evidence of TGDN-specific experiences: and (3) studies that do not adequately describe or report the management or treatment of chronic pelvic pain and/or endometriosis, therefore failing to meet the specific requirements of the target population. There were no geographical or date limitations applied.
Search strategy
A preliminary database search was conducted across a range of electronic databases including Web of Science, PubMed, Scopus, and ProQuest, and the search string was refined accordingly. Following this, inclusion and exclusion criteria were developed to filter through data and ensure that the literature was peer-reviewed, had full text options available online, were published in English, and focused on TGDN individuals AFAB with chronic and/or clinically significant pelvic pain and/or endometriosis
The search string was developed with input from members of the research team who have expertise in relevant areas, including TGDN health, endometriosis, sexual health, sociology and psychology, and importantly, with people part of the TGDN community. It was intentionally designed to be broad in scope to ensure comprehensive capture of pertinent literature across diverse disciplines and sources. To avoid inadvertently excluding pertinent studies, no restrictions were placed on the presence of an official medical diagnosis of endometriosis or duration of pelvic pain. The search strategy was designed to capture a wide spectrum of experiences including early or undiagnosed presentations, in addition to diagnosed cases, whilst ensuring relevance to the research objectives. The PICO approach adopted in the study can be seen in . The primary objective for the search was to collate evidence by identifying existing themes and begin to explore the complexities for TGDN individuals AFAB when gaining access to gender-affirming endometriosis care and identify gaps in existing research to inform future research.
The search terms were selected in conjunction with the research team. The search terms used for the review were: (“endometriosis” OR “pelvic pain” OR “menstrual pain” OR “dysmenorrhea”) AND (transg* OR “gender diverse” OR “genderqueer” OR “gender nonbinary” OR “transgender” OR “nonbinary”) AND (“treatment” OR “intervention” OR “experience” OR “healthcare”). These terms were combined to develop a Boolean search string; truncation and wildcards were also used to capture variations in terminology. The search string was then put into a systematic review tool developed by Bond University (Clark et al., Citation2018), “Polyglot,” and the relevant search strings were applied to the four databases. The results from this preliminary search can be viewed in .
Screening
All articles were screened using PRISMA’s three-stage process, which can be seen in (Page et al., Citation2021). The first stage focused on identifying and removing duplicate articles. The second stage involved screening titles and abstracts, while the final stage consisted of a full-text review (Page et al., Citation2021). During the initial screening, all results were imported into the Systematic Review Accelerator’s deduplication tool (Clark et al., Citation2018). Following the screening process, results were imported into RAYANN with duplicates removed (Ouzzani et al., Citation2016). RAYANN is a web-based tool for systematic review screening that facilitates collaboration. The use of RAYANN streamlined the screening process to enhance efficiency and collaboration among researchers by allowing multiple reviewers to work simultaneously, apply blind screening, and resolve conflicts efficiently (Ouzzani et al., Citation2016). Research has shown that RAYANN’s collaborative functionalities assist the inclusion process and minimize bias through the blind review capability, making it a valuable tool for RSLR (Ouzzani et al., Citation2016). Three independent reviewers (MD, BL, DB) screened titles and abstracts, applying the established inclusion and exclusion criteria. Full text screening was conducted to identify potentially eligible studies, applying a Joanna Briggs Institution screening approach to determine article eligibility (Joanna Briggs Institute, Citation2020).
Data synthesis and analysis
A narrative synthesis approach was applied for data analysis to systematically summarize and interpret the findings from the included studies. This method was chosen to provide a structured and transparent means of integrating diverse types of evidence, particularly as a meta-analysis was not feasible due to the quantity and heterogenous nature of the data across included studies.
Key characteristics of the studies, including study design, geographical location, and key findings, were extracted and synthesized in a comprehensive table (). This table facilitated the identification of patterns, similarities, and discrepancies across the studies, drawing out key data relevant to the research objectives. Eligible articles were then synthesized using Braun and Clarke (Citation2023) thematic analysis, which emphasizes a reflexive process of identifying, analyzing, and reporting patterns within the data. One member of the research team (MD) initially coded the data and two other authors (BL, DB) subsequently reviewed coded data. Codes were then discussed and refined collaboratively through a reflexive thematic analysis process following Braun and Clarke (Citation2023) guidelines. While this review drew on Braun and Clare’s (2023) reflective thematic analysis framework to guide the synthesis of findings, it is important to acknowledge that the principles were applied with a degree of flexibility. As such, thematic analysis was used primarily as a tool for organizing and interpreting patterns across studies, rather than for producing a fully elaborated reflexive thematic analysis due to constraints of available data. Therefore, Braun and Clarke (Citation2023) principles served as a general framework, guiding the analysis. The findings were reported developing the following five themes: (1) Navigating Diagnostic Delays in Cisnormative Systems; (2) Systemic barriers and treatment accessibility; (3) Clinical gaps in provider knowledge; (4) Uncertainty in the role of testosterone use in symptom treatment and exacerbation; and (5) Healthcare experiences and discrimination. This allowed for gaps and limitations to be identified and guide recommendations for future research.
Quality appraisal
The quality of the studies was assessed using The Joanna Briggs Institute (JBI) Critical Appraisal Tool (Joanna Briggs Institute, Citation2020). This tool provides a comprehensive evaluation of the methodological quality and reliability of RSLRs (Joanna Briggs Institute, Citation2020), allowing for an explicit consideration of the risk of bias in the included studies while also permitting all eligible and relevant studies to be included in the final review and synthesis. To ensure the process was rigorous, the quality appraisal was undertaken by three independent reviewers (MD, BL, DB) in a blind review, where any discrepancies were discussed, reviewed, and agreed upon through consensus. The agreed quality appraisal review scores are outlined in the results section (see ).
Results
provides a summary of the characteristics of the data. This RSLR analyzed 12 studies (Eder & Roomaney, Citation2024, Citation2025; Ellis et al., Citation2025; Grimstad et al., Citation2020, Citation2023; Moussaoui et al., Citation2024, Citation2024; Scatoni et al., Citation2024; Schwartz et al., Citation2023; Shim et al., Citation2020; Tordoff et al., Citation2025; Zwickl et al., Citation2023) exploring endometriosis in TGDN individuals, including access to support, treatment and healthcare. The included studies examined various aspects of diagnosis, treatment accessibility, provider knowledge, testosterone use, and the impact of healthcare experiences on the wellbeing of TGDN individuals with endometriosis. The included studies examined various aspects of diagnosis, treatment accessibility, provider knowledge, testosterone use and implications, and the impact of healthcare experiences on the wellbeing of TGDN individuals with endometriosis. The studies in this review were published between 2020 and 2024, highlighting this as an emerging topic within healthcare research. Specifically, the studies were distributed with one study published in 2020, two in 2022, four in 2023, and five studies published in 2024. This suggests a significant increase in research in recent years, highlighting that endometriosis in TGDN individuals AFAB is a growing area of interest. The studies were conducted across multiple regions, including the USA, New Zealand, Australia, and South Africa, with global samples. All studies originated from English-speaking countries, with all studies published in English. The geographic diversity of these studies provides valuable insights into the healthcare barriers faced by TGDN individuals AFAB with endometriosis across the world.
Methodologically, five studies were qualitative in design, exploring the lived experiences and healthcare perceptions of transgender and non-binary individuals with endometriosis (Eder & Roomaney, Citation2024, Citation2025; Ellis et al., Citation2025; Grimstad et al., Citation2020; Shim et al., Citation2020). Four studies utilized cross-sectional designs, including community surveys and exploratory analysis of pelvic pain prevalence related to testosterone use (Grimstad et al., Citation2020; Moussaoui et al., Citation2024; Tordoff et al., Citation2025; Zwickl et al., Citation2023). Three retrospective cohort or chart review studies examined menstrual management strategies and their outcomes among TGDN populations (Moussaoui et al., Citation2024; Scatoni et al., Citation2024; Schwartz et al., Citation2023). These diverse methodologies provided a comprehensive perspective on both the subjective and clinical dimensions of endometriosis and pelvic pain in TGDN individuals (see ).
Regarding quality assessment, the majority of the studies were of high-quality, most scored 70% or higher on the JBI quality appraisal, indicating strong methodological rigor. Notably, Grimstad et al. (Citation2020) achieved a high score of 9/10, while five other studies; Zwickl et al. (Citation2023), Moussaoui et al. (Citation2024), Eder and Roomaney (Citation2024, Citation2025) and Ellis et al. (Citation2025) received scores of 8/10. Additional high-quality studies included Moussaoui et al. (Citation2024) and Grimstad et al. (Citation2023), scoring 9/11 and Schwartz et al. (Citation2023) with 6/8. A small number of studies scored modestly, but still above average, such as Shim et al. (Citation2020) and Tordoff et al. (Citation2025) both scoring 7/10 and Scatoni et al. (Citation2024), scoring 7/11. Across these studies, consistent themes were identified highlighting the significant barriers TGDN individuals AFAB face when accessing healthcare and treatment for endometriosis. Overall, the evidence identified the challenges TGDN individuals face within predominantly cisnormative systems, emphasizing the critical need for inclusive, affirming, approaches to diagnosis and treatment to enhance health outcomes and address disparities in this population.
Navigating diagnostic delays in cisnormative systems
Delays in diagnosis were common across multiple studies, largely due to cisnormative diagnostic frameworks and a lack of provider recognition and awareness regarding endometriosis in TGDN individuals (Eder & Roomaney, Citation2024, Citation2025; Ellis et al., Citation2025; Shim et al., Citation2020; Vallée et al., Citation2023). Eder and Roomaney (Citation2025) reported that transgender individuals often faced significant diagnostic delays, with a median delay of 12 years, thus exacerbating distress and physical pain. Similarly, Ellis et al. (Citation2025) highlighted how medical practitioners frequently overlooked atypical presentations of menstrual related pain in TGDN individuals AFAB, leading to a lack of timely diagnosis and intervention. Another key factor is the barriers to accessing routine gynecological screening and testing among TGDN individuals AFAB, which contributed to a delay or lack of adequate diagnosis amongst this population group (Vallée et al., Citation2023). These diagnostic delays were further compounded by systemic barriers to treatment accessibility, including a lack of provider knowledge and gender-affirming care.
Systemic barriers and treatment accessibility
Access to suitable treatment was affected by systemic barriers, including a lack of provider knowledge and awareness. Eder and Roomaney (Citation2025) found that participants often encountered “medical gaslighting” (i.e. the downplaying of symptoms by health professionals; see (Fetters, Citation2018; (Sebring, Citation2021) leading to insufficient support physically, emotionally and mentally. Reproductive healthcare assumptions amongst providers significantly hindered access to treatment and pain management (Grimstad et al., Citation2023). Eder and Roomaney (Citation2024) highlighted the negative impact that medical gaslighting can have on TGDN individuals sharing the lived experience of a participant in their study, stating:
I generally don’t bring it [gender identity] up to medical professionals because there is just a list of other things I need addressed. I feel like having that experience with the first gynecologist who was just gaslighting me every second, that I didn’t want to give doctors another reason to dismiss my pain (p 915).
Clinical gaps in provider knowledge
Lack of provider knowledge about endometriosis among TGDN individuals AFAB appears to contribute to underdiagnosis and inadequate care in this population. Shim et al. (Citation2020) highlighted that diagnostic evaluations were underutilized in TGDN patients, with insufficient investigation when compared to cisgendered counterparts. Eder and Roomaney (Citation2024) identified a pattern of healthcare professionals dismissing pelvic pain and symptoms amongst TGDN people AFAB, leading to unnecessary, avoidable and prolonged suffering, thus further widening the gap of access to adequate healthcare. Limited provider knowledge not only delays the diagnosis and treatment of endometriosis in TGDN individuals AFAB but also adds complexity to its management, especially when gender-affirming care, such as testosterone therapy, is involved.
Uncertainty in the role of testosterone use in symptom treatment and exacerbation
The impact that testosterone therapy has on endometriosis remains unclear, with mixed findings across the studies included in this review. Some individuals experienced symptom relief with testosterone administration (Vallée et al., Citation2023), while others developed new onset pelvic pain (Grimstad et al., Citation2020; Moussaoui et al., Citation2024). Grimstad et al. (Citation2023) observed high prevalence of pelvic pain among transgender individuals AFAB on testosterone, although definitive conclusions regarding the link to endometriosis were not possible. Moussaoui et al. (Citation2024) found that 23.4% of TGDN adolescents AFAB on testosterone reported pelvic pain, often emerging after the onset of treatment initiation. The purpose of this review was not explicitly focusing on the potential efficacy of testosterone as an endometriosis treatment; however, these studies have been explored in this review because participants fell within the inclusion criteria for this RSLR. The conflicting findings about the role of testosterone in either exacerbating or mitigating pelvic pain highlight the need for further research investigating the implications of testosterone on the onset, development and management of endometriosis. The ambiguities surrounding the effect of testosterone treatment on endometriosis in TGDN individuals is further intensified by broader challenges in healthcare access where the quality of care and healthcare experience is largely influenced by systemic and interpersonal barriers.
Healthcare experiences and discrimination
The reviewed studies consistently highlighted negative healthcare experiences among TGDN individuals’ AFAB with endometriosis. Practitioners who failed to provide an affirming model of healthcare discouraged individuals from seeking adequate medical care (Eder & Roomaney, Citation2025). Ellis et al. (Citation2025) reported that participants frequently felt isolated within the healthcare system, largely due to healthcare providers’ focus on the specific needs of TGDN individuals AFAB and using cisgendered language when discussing gynecological issues. The psychosocial impact of endometriosis on TGDN individuals AFAB was evident, with Eder and Roomaney (Citation2025) highlighting that many individuals struggled with an increase in gender dysphoria exacerbated by menstrual symptoms.
The included studies varied in methodology, sample size, and geographic focus, and collectively provide insights into the systemic barriers faced by TGDN individuals AFAB seeking gynecological healthcare. Findings highlight significant barriers to appropriate endometriosis healthcare, including delays in diagnosis, a lack of provider knowledge, and gender dysphoria exacerbated by gynecological care. Several studies reported significant delays in diagnosis due to a lack of awareness among healthcare providers about endometriosis among TGDN individuals (Eder & Roomaney, Citation2024, Ellis et al., Citation2025; Eder & Roomaney, Citation2024, Citation2025; Shim et al., Citation2020; Vallée et al., Citation2023). The review demonstrates the need for more research in this area to enable evidence based, inclusive and affirming healthcare approaches to improve outcomes for TGDN individuals’ AFAB with endometriosis.
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