Debunking the “Mystical Condition” of Endometriosis: What People Living with Endometriosis Want You to Truly Understand

Endometriosis is associated with reduced health-related quality of life and an increased need for engagement with healthcare providers and services. Using a pragmatic feminist lens we investigated the understanding and support individuals with endometriosis (n = 41) require from healthcare providers and significant others. Inductive, reflexive thematic analysis identified the importance of validation from significant others, a lack of understanding, the importance of multiple support avenues, and the dichotomy of the medical experience. Change is needed in the way we support those with endometriosis, including a greater emphasis on interdisciplinary approaches to care and access to information and resources for significant others.

Endometriosis is a chronic inflammatory condition, defined by the presence of endometrial-like tissue outside the uterus, and is estimated to globally affect approximately 10% of individuals presumed female at birth (Allaire et al., Citation2023). Individuals with endometriosis have been shown to have higher rates of healthcare resource use, including hospitalizations, attending primary care physician, and gynecological appointments, than individuals without endometriosis (Eisenberg et al., Citation2022). Delays between initial symptom onset and seeking medical attention have been attributed to societal perceptions of “normal” compared to “abnormal” menstrual symptoms, menstrual stigma, normalization of sexual pain, and limited understanding within educational and healthcare settings (Grogan et al., Citation2018; Hawkey et al., Citation2022). Individuals have reported frequently experiencing medical professionals labeling their pain as a “normal” experience, “not serious,” “exaggerated,” “imagined,” or “a form of attention-seeking” (Moradi et al., Citation2014; Young et al., Citation2015), leading to feelings of medical minimization and dismissal. Difficulties associated with endometriosis-related patient and medical professional interactions has been suggested to result in insufficient access to medical support, information, and care, leading to feelings of mistrust, despondency, and fear (Márki et al., Citation2022). Qualitative research suggests having medical professionals who are willing to validate the individual’s experience (Berterö et al., Citation2019), respond with understanding (Moradi et al., Citation2014), and facilitate timely and appropriate referrals (Young et al., Citation2015), can foster a positive patient-medical professional alliance, greater engagement in healthcare, and lower healthcare costs. Qualitative research has captured the experiences of those living with the condition and the importance of shared understanding and support. Support from family, friends, and intimate partners has been reported to be an important factor in an individual’s capacity to cope with endometriosis (Márki et al., Citation2022), although some people report that support is largely absent (Hållstam et al., Citation2018). Individuals living with endometriosis have indicated that limited understanding by the people around them such as friends and relatives can be evidenced by having their symptoms normalized or being labeled a “hypochondriac” (Cox et al., Citation2003), not being listened to Moradi et al. (Citation2014), and not being believed, often leading to feelings of isolation and loneliness (Jones et al., Citation2004). Accordingly, existing research has documented the pervasive impacts of endometriosis on multiple life domains of those diagnosed. However, less attention has been directed to increased awareness of the specific aspects of understanding and support that individuals living with endometriosis require from their healthcare providers and personal support networks. Furthermore, published recommendations regarding how to support those with the condition often come from practitioners or researchers rather than individuals with endometriosis themselves. Understanding these needs will ultimately provide a set of recommendations, based on the voices of individuals with endometriosis, for healthcare providers and significant others (e.g., partners, family members, friends) involved in providing treatment and support for those living with endometriosis. To fulfill these aims we explored the following research question: what do individuals with endometriosis want their healthcare providers and significant others to understand about their experiences of endometriosis? Theoretical Framework We took a pragmatic feminist lens to explore the lived experience of those with endometriosis. Adoption of a pragmatic lens in qualitative research provides an effective way for researchers to seek answers to their research questions and allows for both inductive and deductive processes and focuses on practical ways the findings may be implemented (Ramanadhan et al., Citation2021). A feminist lens is recommended given the research aim of gaining an understanding of the unique life-world experiences of women as they navigate the personal, societal, and medical belief systems associated with endometriosis (Cole et al., Citation2021). This lens endorses the need for greater understanding of health and wellbeing for all reproductive bodies, including sexuality and gender diverse individuals from diverse sociocultural backgrounds (Ussher, Citation2023). Moreover, taking both a pragmatic and feminist approach to the data allows us to prioritize practical solutions to the problems addressed by the research. Rather than theorizing healthcare access and endometriosis, we seek to investigate lived experience to creating practical, community-informed suggestions as to how healthcare and community support can, and should, be improved for those with endometriosis. The use of a pragmatic feminist lens in the current study provided a platform for feminist values to inform the development and conduct of the research, with questions that centered on the lives and experiences of women with endometriosis, with the goal of promoting healthcare change and improving community understanding (Randhawa, Citation2023).

Study Design This qualitative study was part of a larger mixed methods study exploring compassion and illness perception and acceptance in individuals diagnosed with endometriosis. This manuscript reports on a section of semi-structured interviews with people who have endometriosis, exploring their lived experience. Ethical approval for conducting the research was granted by the University of Tasmania’s Human Research Ethics Committee (November 2022: H0028579). Data used for this manuscript relates to two open-ended interview questions asked during the semi-structured interviews: “Are there things that you wished people close to you understood about your experience of endometriosis? If so, what would they be?,” and “Are there things that you wished medical and allied health providers understood about your experience of endometriosis? If so, what would they be?” Participants and Procedure Any cisgendered woman or gender diverse person, presumed female at birth, aged 18 years and over, who resides in Australia and experiences symptoms of endometriosis was eligible to participate in the study. Participants were recruited through advertisements on social media platforms, professional networks, gynecology and pelvic physiotherapy clinics, posters, and endometriosis support groups. If people were interested in the study, they were asked to submit a brief survey examining compassion and illness-related factors in endometriosis, and at this stage they were also provided with an information sheet and consent form detailing the qualitative study and its aims. In total, 41 people met the inclusion criteria and responded back to the research team after the initial survey, forming the sample for this study. The interviewer was a provisionally registered psychologist with experience in interview techniques, managing feelings of distress or discomfort during interviews, and reflective practice (Author 1). Interviews varied in length from 30 to 90 minutes and occurred in February to June 2023. All participants who took part in the semi-structured interview provided signed consent prior to the interview commencing and agreed for their deidentified transcripts to be included in the study. Participants were cis gender, aged between 21 and 56 years, predominantly tertiary educated (73.1%), and employed (78%). Pseudonyms are used in the reported participant quotes to enhance participant anonymity (see ). Analysis This project utilized reflexive thematic analysis to analyze the interview data, drawing on the literature by Braun and Clarke (Citation2021, Citation2023). Reflexive thematic analysis is an inductive, interpretative process, as themes are developed through the coding of the data, rather than through a preexisting framework or conceptions (Braun & Clarke, Citation2021), and reflexive engagement with the data is central to the analysis process (Braun & Clarke, Citation2023). Three members of the research team (Author 1, Author 3, Author 9) read through the transcript responses and discussed key concepts that related to the research questions and were evident in the data. This process allowed for data familiarization and immersion before coding begun. Two researchers (Author 1, Author 9) then went through the transcripts, forming initial codes and noting down key concepts most related to the research aim and the theoretical framework. In this sense, data that were most related to key concepts such as ways in which participants experienced support (and lack thereof) in their everyday life, as well as suggestions by the participants about what they desire from healthcare professionals and significant others for support to improve, were most pertinent to the study and thus the focus of coding. The former relates to the aim of the study, while the latter focuses on the pragmatic feminist lens used, inquiring into how lived experience of healthcare can inform practical suggestions on how care and support can be improved. Both macro and micro level solutions were coded for. A codebook, initial themes, and sub-themes were constructed by three members of the research team (Author 1, Author 3, and Author 9), with Author 2 and Author 9 further refining the findings and finalizing themes and sub-themes. The phases of data familiarization, generation of themes and subthemes was supported by NVivo-12. Reflexivity Statement In line with the adoption of a pragmatic feminist lens, and with the engagement of reflexive thematic analysis, the researchers engaged in critical self- and group reflection to understand ways in which the research findings may be shaped by our personal histories and experiences, values and assumptions, and feminist beliefs (Lafrance & Wigginton, Citation2019). The researchers acknowledge that the research team are made up of cisgendered Caucasian or Asian females, with either a lived experience of endometriosis, persistent pelvic pain, and/or another persistent health condition or who research women’s health, pelvic pain or endometriosis. The research team also acknowledge that many of us have personal experiences as females navigating gendered health systems within Australia. Thus, the research team includes a variety of intersectional identities, as well as varying experiences of endometriosis (either from lived experience, research expertise, or both). These experiences were constantly considered throughout all aspects of the research project, including constant internal reflection as to how this was impacting the meaning making of the data. Further, those with endometriosis are not homogeneous, and the diverse needs and experiences of those with endometriosis cannot be accurately reflected by a single research team, which is also integral to acknowledge when considering reflexivity at all stages of the project.

Our analysis of the interviews generated four themes: (1) the importance of validation from significant others, (2) a lack of understanding, (3) the importance of multiple support avenues, and (4) the dichotomy of the medical experience. Each theme included multiple sub-themes (). Theme 1: The Importance of Validation from Significant Others Experiences encompassing a desire for greater empathy, compassion, and acceptance of their endometriosis-related experiences and accounts by significant others were provided by over one third of participants. The importance of accepting the information shared by the person with endometriosis, rather than questioning or trying to reframe their experience in a positive manner was emphasized by the participants. It’s hard to work out if they are deliberately trying to be hurtful”—Empathy and Compassion. Participants spoke of seeking support from those in their personal and social networks and wanting someone to listen and empathize with them. However, they indicated that empathy and compassion were often absent within their networks, and that their endometriosis was rarely considered: I just wish people kind of thought a bit more deeply about why someone might be behaving a certain way… I do feel like crap and it’s not because I’m a nasty person or anything, it’s just because I don’t feel very good. (Mary) Interviewees spoke of the insensitivity of those within their personal networks, with one participant providing an example of family members commenting on a delay in conceiving her second child. This was despite knowing of her difficulty conceiving her first child. Many participants indicated that they found it difficult to determine whether comments were intended to be hurtful or were due to a lack of understanding about the condition “Some people can be insensitive about it, I guess. And I don’t know if they intentionally mean to be” (Bella). In contrast, a smaller number of participants described experiencing a sense of empathy and compassion from members of their support system. These findings correlate with other research that found male intimate partners of people with endometriosis developed empathy and become more capable of listening and providing support through increased exposure to the condition (Culley et al., Citation2017). Thus, greater exposure and awareness to endometriosis may foster more empathic support from social and familial networks. However, participants in the present study also reported feeling that significant others held expectations that they should be able to function day-to-day without difficulty or struggles. Individuals with endometriosis have reported difficulties fulfilling their social roles and commitments, leading to distress, identity disruption, guilt, and avoidance of social situations so that they “will not let others down” (Cole et al., Citation2021). They need to stop saying that it’s all in your head, because it’s not.—Accepting My Endometriosis-Related Accounts Interviewees wished that their significant others could appreciate and acknowledge their experience without being dismissive, doubting, or discounting and normalizing their struggles. Other participants wished people would withhold judgment when discussing their experience of endometriosis, with one participant (Alina) stating: It’s hard to have a conversation about it with someone who’s not judging, and you just want to get your story out. Usually someone makes a comment or something and then it shuts you down and you’re like it’s not worth it. For years [family members] called me a liar and wouldn’t take my word and I find that hard to forgive and forget…If your parents don’t believe you when you’re on the floor howling in pain, who’s going to believe you about anything? So, my first period involved heavy bleeding, passing out, nausea, vomiting, and being put to bed and being told “it’s alright, it’s normal.” I had older generation parents who didn’t speak about menstruation, so I had no idea what was going on. (Zoe) Theme 2: A Lack of Understanding Participants reflected that healthcare practitioners and significant others spoke and behaved in ways that showed a lack of understanding and endometriosis-related knowledge. Participants expressed the need for medical providers and significant others to want to understand more. I wish they would understand what it is.—Greater Understanding of the Whole-of-Person Impacts Participants indicated that they wanted significant others to understand that endometriosis is far more than a physical condition, encompassing the body and the mind, with the variety, severity, and magnitude of symptoms far greater than significant others seemed to be aware. These results emphasize the importance in understanding the range of endometriosis-related symptoms. The understanding of endometriosis and its whole-of-person impacts is particularly poignant given the link between greater symptom burden and lowered health-related quality of life for people diagnosed with endometriosis (Van Niekerk et al., Citation2022). For instance, participants rarely felt the psychological impact was considered by those around them: The psychological impact is probably something that people wouldn’t necessarily think of before they thought of the physical pain… I would say the psychological impact is probably worse than the pain. (Violet) For me, if they were able to feel the pain that we do, without me having to use the English language to try and box it in, oh that would be so good. (Rose) Several interviewees spoke about wanting significant others to understand that endometriosis is a chronic, long-term, and incurable condition, and whilst treatments may help, they do not “fix” the problem. Zoe emphasized: “You can’t cure it, to start with. There’s no magic bullet, pregnancy doesn’t work, having a hysterectomy doesn’t cure it.” Participants wished that those around them would respect that the decisions people with endometriosis make about their body may be different to the ones made by people not living with a chronic disease. Not only this, but the way support systems understand endometriosis may impact the healthcare decisions of those with the disease (Metzemaekers et al., Citation2021). Interviewees suggested that the severity of endometriosis is minimized by those around them due to the invisible nature of the disease, compared to other conditions that are visible: “You usually see someone [with endometriosis] and they look fine from the outside, whereas if you had cancer, they can see the physical impact on you, and that part’s frustrating” (Olivia). Interviewees reflected that this may, in part, explain why others have difficulty understanding and comprehending their endometriosis-related experiences, with some wishing that people could see inside them to understand the full impact of the condition. Megan stated: “Sometimes it feels overwhelming to feel young and to look healthy but then you’re sick.” In this sense, the invisible nature of endometriosis creates complexities for those with the disease as the people around them lack understanding. This may lead people with endometrioses to self-silence or hide the impact that endometriosis is having in the public eye to avoid conflict in relationships (Cole et al., Citation2021) or to avoid being stigmatized (Seear, Citation2009). This was observed in the current sample with participants referring to feeling like they needed to put on a “brave face” or “look happy on the outside” to avoid putting additional strain on important social relationships. Theme 3: The Importance of Multiple Support Avenues Taking a pragmatic approach, the lived experiences of participants also led to reflections on how care and support could be improved. Participants highlighted the need to provide support and care through a variety of settings, with supports tailored to the unique needs of the person rather than a one size fits all approach for endometriosis. I find the support is not really there.—A Need for Better Support Many participants acknowledged their need for support and the positive impacts of receiving support. However, and as noted in previous research (Mastrangelo & Turnbull, Citation2022), many also identified that support was lacking. Some participants suggested that a lack of public messaging about endometriosis could be contributing to this lack of support. Others suggested solutions such as having more support groups available would be beneficial in understanding and exploring symptoms as well as potentially encouraging individuals to seek diagnoses earlier. Support groups have been reported to provide a space for mutual understanding and acceptance as well as a space where individuals can evaluate medical information and share coping strategies. A lack of support, and the invisible nature of endometriosis, were once again entwined by participants. A temporal theme throughout the interviews was participants comparing the way endometriosis is conceptualized against other disease, linked to pain being an expected part of “female” life (Grundström et al., Citation2018): Everyone’s scared of cancer… There’s just so much support, so much understanding. Then you say you have endo, no one knows about it, no one knows what it is, no one knows what physical effects or mental health effects it has on your body, so they’re like “it’s a woman’s disease, it’s a period problem”… because it’s so hidden. (Lisa) I can’t believe that I went to work in so much pain. But it’s hard to have time off, I just don’t know how you marry those two. Our society is pretty unforgiving of ongoing time off work and I don’t know how you’d manage that as a workplace. (Maria) A lack of workplace support for endometriosis is commonly described in the literature (Moradi et al., Citation2014; Young et al., Citation2015), with many individuals describing employers as lacking empathy and understanding upon disclosure and discussion of their condition (Culley et al., Citation2013). Some research has proposed that workplace accommodations continue to be insufficient due to endometriosis being perceived as a “woman’s disease,” and the stigma associated with discussing reproductive health issues (Krsmanovic & Dean, Citation2022). Thus, support is needed throughout all life-worlds of people with endometriosis, with the workplace being no exception: After my third surgery, I got told to leave one of my jobs. All I was asking for a was a little bit of support. I got told I wouldn’t be supported to work or anything because of my illness and I’m like I’ve got a disability. I have symptoms everyday. (Tracey) Theme 4: The Dichotomy of the Medical Experience Moving beyond experiences with significant others, participants also believed greater care and support was needed by medical professionals for endometriosis. It was also found that “care” for endometriosis is far from homogenous. There was a highlighted a dichotomy in the availability of endometriosis-related care and trauma-informed person-centered practices. I’m like, why do I know more than a GP?—A Need for Improved Medical Care When thinking on medical care holistically, participants noted many areas that required improvements. This included: medical professional knowledge, the approach to healthcare, surgical wait times, and the length of appointments. Misinformation by medical professionals more generally was a key concern of participants. Multiple participants expressed that increased understanding and awareness by medical professionals may avoid individuals being misdiagnosed or inaccurately treated, with an emphasis on a greater understanding of the harm associated with providing misinformation or medical myths. As-Sanie et al. (Citation2019) report that healthcare providers may inaccurately recommend unnecessary and invasive medical procedures due to a lack of endometriosis-specific knowledge and education, for example recommending hysterectomy as a first- or second-line treatment option rather than as the recommended last-line approach (Kalaitzopoulos et al., Citation2021): I find the misinformation infuriating especially when you have people who have endometriosis say something like “my doctor told me if I have a hysterectomy, it’ll cure my endometriosis.” This is false, damaging, and misleading and these people are going to consent to major surgeries without having informed consent. (Mae) For people to be looking at the biological, the social, and the psychological with the person with endo in the middle like you can’t really separate it. And if you do, people are left feeling cold and deserted and that is not good for their self-care. (Anna) I think it’s important that people understand the pain we are going through because the surgery wait times in public health were two years for me to have a bowel surgeon involved. It’s just ridiculous. (Janice) I just feel that the health system doesn’t always take females seriously. – Negative Past Experiences Rather than conceptualizing the need for improved medical care more generally, over three quarters of participants also described specific negative endometriosis-related experiences with medical professionals. Those experienced included a feeling of being unheard, dismissed, undervalued, or disrespected. A large proportion of interviewees described feeling unheard by medical professionals and expressed a strong desire to see this change: They’re [doctors] not listening to patients. They’re not listening to them online, they’re not listening to them face-to-face. I feel like every time I go to a doctor I’m not listened to and so I don’t go for a very long time. I just wish we were, people with endo, were listened to more. (Lisa) I think when somebody comes to you for years in pain and your response, as a medical professional, is to do nothing or to gaslight them, it’s not a matter of educating you, it’s a matter of getting you out of the medical community. (Olivia) Multiple interviewees described not feeling valued and respected by their treating medical professionals. For some, this involved feeling like healthcare providers failed to communicate and share important information with them regarding their body, with some indicating a belief that their medical practitioner had lost sight of them as a human being, as noted by Amelia “I have found, through both being on the patient side and the professional side, that they lose sight that the person is a person.” This is again indicative that a “medical gaze” (Foucault, Citation1973), or the medicalization of a person’s body, is a contributing factor to inadequate care. It is important that people with endometriosis are afforded greater agency over their health-based decisions and body. This can be achieved through listening to the person’s account, discussing their experiences with empathy and respect, providing clear explanations of available treatment options, and emphasizing shared decision making (Rowe et al., Citation2021). Respectful engagement by medical providers may minimize the distress, frustration, and trauma noted in the current study and previous studies, particularly as poorly controlled pain and psychological harm associated with medical invalidation may contribute to mental ill health (Evans et al., Citation2022). A few participants discussed difficulties with being treated by male medical practitioners in particular, indicating a preference for someone who has a lived experience, with Yvonne stating: “It’s really awkward when you’ve got endo and you constantly have a man down there.” Those that spoke on this topic reported feeling that male practitioners were not able to fully understand their endometriosis-related experiences. For example, Clarice reflected “I find it difficult to be treated by a man who’s never had a period. Somebody who’s got endo themselves is better to deal with, and I’ve come across a few of those in the support that I’ve had.” Lived experience is an important legitimizing agent as it is less filtered through a medical lens, creating trust (Young et al., Citation2019). Regardless of gender, interviewee’s often spoke about wishing medical and allied health professionals expressed more empathy. All participants within this subtheme shared stories about insensitive comments or approaches they had experienced during their treatment and care. For instance, Alina reported “The nurses the first time when I found out I miscarried, they said “there’s lots of women worse off than you.” Yeah, terrible. “At least you fell pregnant.” It doesn’t matter, I still didn’t have a baby,” which also highlights the need for trauma-informed frameworks: For my surgeries now I have to go to the city… they admit me into maternity wards. When you’re experiencing fertility issues, when you’ve had multiple miscarriages, and you’re having surgery to figure out whether you can have children and you wake up with babies crying around you, it is quite traumatic to experience. (Sharon) I didn’t listen to you and I’m sorry.—Positive Qualities of Medical Practitioners Some participants acknowledged that although they had many negative experiences with medical practitioners, there had also been positive ones. The positive experiences were underpinned by medical professionals who were transparent about the limits of their endometriosis-related knowledge, demonstrated an empathic approach, were proactive, and provided a space to be heard. I remember her calling me once she had results and she’s been the only GP I’ve known to have apologised, and she was sympathetic. She said “look, I’m so sorry. They teach us that we should listen to our patients. And I didn’t listen to you in that instance, but you do have it and I’m really sorry. (Bella) Interviewees also reported on the difference that can be made during treatment when the medical practitioner acknowledges the potential physical and/or psychological discomfort associated with certain medical procedures. For example, Grace recalled “We did the procedure, and she was incredibly respectful and understood how much pain I could’ve been in and was saying ‘is this okay? I can stop at any time’ you know, just really, really got it.” A few participants emphasized that having a medical practitioner who possesses knowledge about endometriosis has the potential to make a significant difference to their experience, especially when this knowledge is relayed either to the individual or shared with other less-knowledgeable practitioners.

There has been an increasing acknowledgment of the importance of consumer-led research priorities (Armour et al., Citation2023) and consumer-centered care (Dancet et al., Citation2023) in endometriosis. The lived experience of people with endometriosis can provide valuable insights into developing and refining healthcare. There are various ways in which people with endometriosis can shape health service design by contributing their insights to develop new or improved services (Carlini et al., Citation2024). The present study provides multiple insights into what people with endometriosis desire from their significant others and medical professionals in relation to support. By adopting a feminist pragmatic approach that both centers the individual experiences and considers how these experiences can be used to support care, multiple insights are gleaned. Thus, in taking a practically orientated view informed by feminist values, we focus on how lived experience can be used to address the inequalities, issues, and deficits regarding support for people with endometriosis. Firstly, participants recounted a variety of medical experiences where they felt dismissed, neglected, and not listened to. At the same time, they felt medical knowledge on endometriosis was poor, compounded by macro factors such as short appointment times. One suggestion was the need for interdisciplinary and multidisciplinary care. An interdisciplinary patient-centered approach has been recognized as best practice for management of chronic pain conditions (Allaire et al., Citation2023) and has been recommended previously in literature for the management of endometriosis (As-Sanie et al., Citation2019; Rowe et al., Citation2021). Access to an interdisciplinary network of health professionals has been proposed to increase patient satisfaction and health outcomes, as well as provide potential educational benefits for professionals involved, due to the collaborative nature of a multidisciplinary team (Frayne et al., Citation2023). Further, and on an individual level, training/education for medical professionals was suggested as a possible avenue for improving care. Frayne et al. (Citation2023) explored GP’s perspectives on the challenges in diagnosing and managing endometriosis in patients, finding that many of the theme’s identified crossed-over with patients’ perspectives. For example, challenges included having time constraints on appointments, working with individuals with low health literacy, and importantly challenges with the system insofar as accessing more in-depth education in the diagnosis and management of endometriosis, particularly when GP’s understanding and awareness of endometriosis is limited. Taken together, research is suggesting the need for better support at both the individual and medical level. Whilst practice guidelines for the treatment of endometriosis exist, it has been proposed that greater guidance at a local level would be beneficial (Frayne et al., Citation2023). Ongoing professional development, increased educational exposure, and endometriosis-specific training programs may be options for raising awareness and achieving greater health professional competency (Agarwal et al., Citation2019). Some of the interviewees advised that they believe the attitude in the medical industry toward women’s health matters requires change. Gender biases in medicine have been an ongoing issue, with research showing women disproportionately experience diagnostic delays, do not have complaints investigated properly, face trivialization of symptoms, and are less likely to receive advanced diagnostic and therapeutic interventions than men (Mirin, Citation2021). Furthermore, women have been consistently underrepresented in health studies and clinical trials (Bierer et al., Citation2022). Participants in this present study felt they were often reduced to their symptoms by medical professionals, with the “whole person” rarely considered. We argue that this biomedical approach to care does not center the individual in their treatment and is leaving those with endometriosis uncared for and unsatisfied. The medical system itself – one that often dismisses and normalizes the “feminization of pain” (Hawkey et al., Citation2022), needs to be considered a barrier for addressing and improving endometriosis related care. In emphasizing action and change, there needs to be more awareness and recognition of the importance of women’s health matters to close the women’s health gap and improve health outcomes. There needs to be practical solutions to this issue of gender inequality, which are informed by the experiences of those involved with endometriosis related healthcare. For instance, this may be achieved through revising medical curricula in educational settings to increase our understanding of female-dominant conditions and the current barriers to treatment (Mirin, Citation2021), which are co-designed or informed by the stories of people with endometriosis. At the same time, the endometriosis community are not a homogenous group, and framing endometriosis as a disease only had by women widens the divide for gender diverse communities (Adler et al., Citation2024). This is why adopting more intersectional approaches, such as pragmatic feminism, are paramount in considering solutions for improving endometriosis related healthcare. Endometriosis has slowly been gaining greater recognition with the introduction of initiatives such as the National Action Plan for Endometriosis and Endometriosis Awareness Month (BMC Medicine, Citation2023), however greater efforts are still required as many individuals continue to encounter a large lack of understanding within their community. This study suggests that people with endometriosis struggle to be understood by their significant others, colleagues, and friends. An important component in increasing awareness involves increasing social conversation that challenge stigma (Seear, Citation2009). Campaigns, such as the #1in10 campaign, have been developed as a way of starting conversations about endometriosis and have shown positive effects in providing a space for individuals living with the condition to speak about their experiences and challenge taboos (Stanek et al., Citation2023). Awareness campaigns should be developed by a comprehensive team including advocacy groups, clinicians, government personnel, and media strategists (Seear, Citation2009) and be targeted toward the broader public to reach beyond the community already engaging with endometriosis-related content. At the same time, the role of support from families and friends of people who has endometriosis needs to be considered as a compounding factor on the lived experience of those with the condition. Advocacy and education, specifically designed on how to support loved ones with endometriosis, is a crucial first step. Yet, advocacy campaigns do not exist in a silo, and continued efforts to educate young people in schools on menstrual health, recognizing normal and abnormal menstruation, and when to seek help or advice, may be a way of fostering awareness. In the current study, multiple participants discussed the importance of understanding your body from an earlier age in the context of endometriosis and menstruation. Research has recommended that rather than health literacy being taught as one-off lessons, education should be ongoing, reflecting the range of ages in which menstruation and endometriosis-related symptoms may arise (Randhawa et al., Citation2021) and take a holistic approach to women’s health rather than a purely biological one (Curry et al., Citation2023). Further, the role of workplace adjustments needs greater consideration by future research. People with endometriosis challenge the traditionally male conceptualization of the ideal worker, and few participants in this study recounted positive work experiences. Yet, existing research demonstrates that workplaces permitting flexible work hours and location is beneficial for those with endometriosis and thus relates to greater productivity (Armour et al., Citation2022). Thus, all facets of society – work, personal, schooling and education, and medical – need to be considered when we are discussing what “support” looks like for endometriosis. The “whole-of-person” needs to be considered, rather than fragmenting a person’s existence into only one facet of social life. Strengths and Limitations One of the studies greatest strengths was its qualitative approach. The semi-structured interviews allowed for in-depth exploration of participants experiences, free from judgment, from the individual’s perspective. The spontaneity of information provided could not have been captured from a quantitative survey alone. Another strength of the study was its’ large sample size. This allowed the research team to capture a wide range of experiences and breadth of information. With regards to limitations, participants recruited may not be representative of all individuals living with endometriosis in terms of their experience, gender, and socio-demographic factors. Future research should consider exploring endometriosis-related perceptions and experiences in individuals from gender diverse, cross-cultural, and younger populations, as endometriosis-related knowledge from these cohorts are lacking but required. Although recruitment for the current study utilized inclusive language, the authors acknowledge that, historically, gynecological healthcare research has typically focused on cisgender samples, leading to a lack of information regarding the lived experiences of transgender and gender diverse people (Jeffrey et al., Citation2024). The authors acknowledge that the experiences documented in the current study, and conclusions drawn, may not accurately reflect the experiences, and needs, of transgender and gender diverse people in accessing endometriosis-related care.

The current study has further highlighted the challenges faced by individuals living with endometriosis by exploring a range of aspects where they wish health professionals, significant others, and the broader community had a better understanding. The underlying factor for many of the captured themes was an acknowledgement that there continues to be a pervasive lack of understanding and awareness from family and friends and the medical industry, which has flow on effects for many other areas of one’s life, including the quality of the support they receive, what treatment they receive, and how they cope with and manage their symptoms. Whilst this understanding and awareness appears to be gradually increasing, this study has shown there is a still a long way to go in terms of what we understand about endometriosis from the lens of someone living with the condition. However, through adopting a framework underpinned by feminist values, yet a pragmatic view on how inequalities can be addressed, the present study suggests multiple pathways and recommendations for improving support for those with endometriosis. With the guidance of the recommendations from the current study, drawn from the voices of those with endometriosis, as well as previous research, collective improvements can be made across communities regarding how we treat, support, and manage endometriosis into the future. Human Research Ethics Statement Ethical approval for the conducting the research was granted by the University of Tasmania’s Human Research Ethics Committee in November 2022 (Reference: H0028579). All participants provided informed signed consent for their deidentified information to be analyzed and published. Acknowledgments We thank Endometriosis Australia, EndoActive, EndoZone, and the endometriosis support groups who assisted with advertising the study through their social media sites. We sincerely thank and acknowledge the people living with endometriosis who volunteered their time and lived experiences referred to in this manuscript. Brania, N.: Data collections, Formal analysis, Interpretation of findings, Writing – original draft, Writing – review & editing. Adler, H.: Writing – original draft, Writing – review & editing. Richardson, E.: Conceptualization, Methodology, Investigation, Data collections, Formal analysis, Interpretation of findings, Writing – original draft, Writing – review & editing. Ng, C.: Writing – original draft, Writing – review & editing. O’Hara, R.: Writing – original draft, Writing – review & editing. Pirotta, S.: Writing – original draft, Writing – review & editing. Schubert, R: Writing – original draft, Writing – review & editing. Trainor Parker, L.: Writing – original draft, Writing – review & editing. Van Niekerk, L.: Conceptualization, Methodology, Investigation, Data collections, Formal analysis, Interpretation of findings, Writing – original draft, Writing – review & editing. Disclosure Statement Leesa Van Niekerk is a member of the Clinical Advisory Board for Endometriosis Australia. Cecilia Ng declares grant funding from the Australian Government and Medical Research Future Fund (MRFF). MRFF did not provide any financial contributions for this research. Leesa Van Niekerk, Ruth Schubert, and Cecilia Ng are members of the National Endometriosis Clinical and Scientific Trials (NECST) Network Steering Committee. The NECST Network did not provide any financial contributions for this research. All other authors have no disclosures. Data Availability Statement The datasets generated during and/or analyzed during the current study are not publicly available due ethical restrictions applied by the University of Tasmania Human Research Ethics Committee. Correction Statement This article has been corrected with minor changes. These changes do not impact the academic content of the article. Additional information Funding

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