Exploring women's experiences of informational support provided by gynaecologists in endometriosis care: a qualitative study

Endometriosis affects approximately one in seven women of reproductive age 1 in Australia, positioning it as a significant chronic condition within the public health sphere. Endometriosis is characterised by the growth of tissue similar to the uterine lining outside the uterus, which leads most commonly to painful periods, chronic pelvic pain, painful sex and pain on defecation and urination. 2 3 Endometriosis remains incurable and its cause is not yet fully understood, complicating treatment of the condition. While its impacts can be wide-ranging, including effects on quality of life 4 5 and daily functioning, 6 7 the condition remains incurable and requires ongoing multidisciplinary management. This paper uses the term ‘women’ to reflect the predominant language in the literature and in participants’ accounts. However, the authors acknowledge that transgender, non-binary and gender diverse individuals are also affected by endometriosis. Care pathways for women with suspected endometriosis typically begin in primary care, with general practitioners (GPs) serving as the first point of contact following symptom onset. 8 National and international clinical guidelines outline the central role of GPs in identifying symptoms consistent with endometriosis, initiating first-line management such as analgesia or hormonal treatments, and excluding other potential causes. 9 Where symptoms persist, are severe or do not respond to initial treatment, guidelines recommend referral to a gynaecologist for further assessment. 9 Gynaecologists play a central role in the next stages of care, undertaking specialised diagnostic evaluation that may include imaging and, where indicated, laparoscopic investigation. 9 10 In line with evolving clinical guidelines, there is increasing emphasis on clinical diagnosis and early management without necessarily requiring surgical confirmation. Gynaecologists are responsible for guiding treatment planning, including discussion of hormonal therapies, pain management strategies and surgical options, including excision or ablation of lesions. 9 – 11 They also provide ongoing care management, including monitoring treatment response, managing recurrence and supporting decisions related to fertility, including referral to fertility specialists when appropriate. Given the multisystem nature of endometriosis and its wide-ranging impacts, multidisciplinary approaches are recommended to support comprehensive, person-centred care that is tailored to the individual’s situation. 12 – 15 Despite longstanding recognition of their value, access to multidisciplinary clinics remains limited. 16 As a result, endometriosis continues to be predominantly managed within a gynaecological model of care, largely overseen by GPs and gynaecologists. 17 Beyond clinical management, guidelines highlight the role of gynaecologists in providing clear, evidence-based information to support patient care. 10 In the context of a chronic and often unpredictable condition such as endometriosis, access to appropriate informational support is essential to enable individuals to make informed decisions and maintain a sense of autonomy over their care. 18 However, recommendations for patient education vary considerably across clinical practice guidelines for persistent pelvic pain conditions, both in terms of the content that should be covered and how this information should be delivered, highlighting inconsistency in how informational support is defined and operationalised in clinical care. 19 Evidence indicates that women often rely on internet resources to obtain information about endometriosis, 20 and a growing body of research has examined the availability and quality of endometriosis-related information, particularly within online environments. 20 This includes evaluations of content across social media platforms such as Instagram 21 and Facebook 22 – 24 as well as websites. 25 – 27 While these studies provide valuable insights into the broader information landscape, comparatively little attention has been directed towards informational support delivered by healthcare professionals. Existing research has consistently highlighted gaps in GPs’ knowledge of endometriosis, which are considered a key contributor to diagnostic delay. 28 Both women’s accounts of seeking care and GPs’ own reports 29 30 point to a need for enhanced education on endometriosis within primary care. 31 This is further supported by findings from multidisciplinary healthcare professionals specialising in endometriosis care, who have identified a lack of up-to-date knowledge across the broader medical community. 30 Such knowledge gaps represent a direct barrier to the provision of effective informational support. In contrast, the level of knowledge of and informational support provided by gynaecologists have received comparatively limited investigation. Available evidence suggests that informational support from gynaecologists may at times be insufficient 32 ; however, patient preference studies indicate that women favour receiving endometriosis information from gynaecologists. 33 There remains a notable gap in understanding how women experience informational support provided by gynaecologists, despite their central role in the diagnosis, treatment and ongoing management of endometriosis. Given the complexity of the condition and the importance of specialist care, exploring the nature and quality of informational support provided by gynaecologists is essential. This study aimed to explore Australian women’s experiences of informational support related to endometriosis provided by gynaecologists. Specifically, this article describes women’s information-seeking in the context of receiving an endometriosis diagnosis and explores their experiences of informational support from gynaecologists both before and after diagnosis.

This study used a qualitative descriptive design to explore Australian women’s experiences of information seeking from gynaecologists in relation to suspected endometriosis, including pathways to diagnosis and subsequent management and treatment. This approach was chosen to focus on detailed accounts of women’s experiences of information seeking. The Consolidated criteria for Reporting Qualitative research (COREQ) checklist was used for reporting. 34 No patients or community members were involved in the design of the study. The authors previously conducted a cross-sectional survey (n=265) on the information needs of Australian women with endometriosis, in which participating women could indicate their willingness to be contacted for further research. Of the 32 women who indicated their interest in future research, all of whom were contacted, 16 provided informed consent and participated in an interview. Women were eligible to participate if they were over 18 years of age, lived in Australia and had either a confirmed or suspected diagnosis of endometriosis. In alignment with reflexive thematic analysis (RTA), sample size was determined based on the study’s aims, scope and the anticipated richness of the dataset. Evidence from qualitative research indicates that key themes in inductive analyses are typically identified from the first six to twelve interviews. 35 36 Therefore, an initial target of 15 interviews was set to plan recruitment avenues; however, this aim was not utilised in deciding how many interviews were sufficient to answer the research question. The first author maintained reflective notes on emerging patterns throughout data collection to support ongoing familiarisation with the dataset and to inform decisions about when sufficient depth of engagement with participants’ accounts of informational support had been achieved to address the study’s research aim. Semi-structured interviews, a common tool with qualitative descriptive research, were used to explore women’s experiences of seeking information about endometriosis. 37 Interviews were conducted using a semi-structured interview guide ( online supplemental file 1 ) with open-ended questions exploring women’s information seeking experience and their satisfaction with information received. The guide was developed by the research team based on the study aims and informed by the existing literature on informational support for women with endometriosis. 20 The interview guide was reviewed by the multidisciplinary research team to ensure relevance, clarity and coverage of the research questions. The interview guide focused on informational support in general; however, in the answers gynaecologists were discussed as a primary source of information. Therefore, the current manuscript represents women’s experiences of gynaecologists as sources of information on endometriosis. While demographic information was not specifically sought from the women, throughout the interviews women disclosed information regarding their age, state of residence and year of diagnosis. Interviews were conducted between 4 August 2025 and 30 October 2025. Participants had previously contributed to the first author’s PhD project; however, this was in the context of an anonymous online survey. Therefore, no prior relationship existed between the interviewer and the participants. Women were informed about the study aims and the interviewer’s PhD project if they expressed interest. All interviews were held online to facilitate national recruitment. While online interviews may present limitations, such as being less personable due to the lack of social cues and a shared space, 38 they also offer advantages such as increased anonymity 39 and reduced time and travel burden. 38 Interviews were conducted via Zoom, recorded and transcribed using the automated Zoom function. The transcripts were reviewed by the first author to ensure accuracy. The duration of interviews lasted between 27 and 83 min with an average of 48 min. Member-checking of transcripts was conducted to confirm accuracy. RTA was used to analyse the data in this descriptive qualitative study of women’s experiences of informational support provided by gynaecologists in endometriosis care. 40 41 Coding was conducted primarily at the semantic level, focusing on the explicit, surface content of women’s accounts rather than theorising latent or underlying meanings. This was appropriate given the descriptive aim of the study, which sought to characterise and organise women’s reported experiences of informational support rather than to develop a deeper theoretical account of the structures underlying those experiences. Semantic coding allowed the analysis to remain closely grounded in women’s own words and stated experiences, consistent with the descriptive intent of the study. Additionally, inductive coding was applied as this study was exploratory and therefore did not rely on pre-existing evidence or frameworks. The flexibility of inductive coding is in line with the nature of descriptive research in which the analysis should remain close to participants’ accounts. The analysis was conducted by a single researcher. RTA was particularly well suited to this context, as it does not require the establishment of inter-coder or inter-rater reliability. Braun and Clarke 41 42 argue coding and theme development are inherently interpretive and shaped by the researcher’s perspective, knowledge and analytic choices. Therefore, inter-coder reliability is conceptually at odds with the qualitative underpinnings of RTA, as it presupposes a single, fixed and correct coding of the data that independent coders should converge on. To support analytic rigour in the absence of inter-coder checks, reflexive practices were maintained throughout the research process. Field notes were recorded before, during and after each interview, capturing the researcher’s initial reactions, observations and analytic reflections as they arose. Debriefing discussions were held with the research team following interviews, providing an opportunity to reflect on and interrogate the researcher’s interpretive assumptions and analytic decisions as they developed. In addition, iterative re-engagement with the dataset was undertaken throughout the analytic process, allowing coding and emerging themes to be revisited and reconsidered as familiarity with the data deepened. These practices are consistent with RTA’s emphasis on reflexivity. 41 42 Braun and Clarke’s suggest a six stage framework for RTA. 40 42 Data familiarisation was achieved through review of and repeated reading of the transcripts. Initial line-by-line coding was then undertaken ensuring the initial codes stayed close to the women’s own wordings. The codes were reviewed for accuracy and grouped into preliminary themes. The preliminary themes were subsequently reviewed to ensure accuracy and internal consistency through comparison with the original dataset. The final phases of the analysis, refining, defining and naming themes, were undertaken iteratively during the writing process. Illustrative quotes are used throughout and attributed using participant ID, age and year of diagnosis. The first author, Deniz Senyel, is a female third-year PhD candidate with experience in qualitative interviewing and women’s health research. Although she has not been diagnosed with endometriosis, she has personal experience of navigating the Australian healthcare system as a woman. Throughout the study, ongoing reflexive practice and regular discussions with the research team were undertaken to critically examine how her positionality, assumptions and experiences may have influenced the interview process, participants’ disclosures and the interpretation of the data. These reflections were used to enhance the credibility and trustworthiness of the analysis while recognising that knowledge is co-constructed through interactions between the researcher and participants. Professor Boyd is an epidemiologist with expertise in population health research and the application of quantitative methods to investigate health outcomes and healthcare delivery. While not directly involved in conducting the interviews, he contributed to the interpretation of the findings by bringing a population health and methodological perspective, encouraging consideration of the broader healthcare context and implications for policy and practice. His background in epidemiology influenced attention to issues of transferability, interpretation and the relationship between participants’ accounts and existing evidence, while remaining mindful that the findings represent subjective experiences rather than objective measures of healthcare quality. Throughout the analytic process, he engaged in critical discussion with the research team to challenge assumptions, consider alternative interpretations and support a rigorous and reflexive analysis. Professor Graham is a mixed methods researcher with expertise in women’s health. She acknowledges that her more than 20 years working in public health women’s health have shaped her knowledge, understandings and interest in this research topic. While her prior knowledge provided valuable contextual understanding it also created the potential for assumptions about the women’s experiences. Throughout the research process she questioned assumptions, including her own, challenged interpretations, and provided contextually meaningful understandings of the data and the constructed themes. Regular discussions with the research team ensured our own assumptions and perspectives did not influence the interpretation of the women’s experiences. This process enabled a reflexive and iterative approach to the analytic and writing as analysis process ensuring the data stayed close to the women’s words while enabling meaningful and contextualised interpretation.

Of the 16 women participating in the study, all except one had a confirmed endometriosis diagnosis. The women were recruited from four Australian states: New South Wales (n=6), Queensland (n=4), Victoria (n=4) and Western Australia (n=2). The women were on average 33.4 years old and diagnosed 7.5 years ago. Gynaecologists were identified as central to women’s information seeking experiences within healthcare settings. Analysis of women’s accounts of informational support provided by gynaecologists generated three overarching themes: Finding a gynaecologist who felt right: navigating a complex care pathway; Variance in informational support before diagnostic surgery and the uncertainty of recovery time; and Understanding what comes next: informational support and its gaps after diagnosis. This theme provides context for the informational support experiences described in subsequent themes, capturing women’s experiences of navigating a complex and often prolonged pathway to finding a gynaecologist who felt like the right fit for them. Women frequently described this search as a necessary precursor as appropriate informational support, diagnosis and care could only begin once the (perceived) right specialist had been found. Many women described limited guidance from GPs during this early stage, and emphasised that gynaecologists’ expertise in endometriosis was essential to avoid misinformation. Consequently, many women relied on personal research and the experiences of other women to identify suitable gynaecologists. The process of finding a gynaecologist thus set the stage for the informational support experiences detailed in the themes that follow. While GPs played a key role in initiating referrals, these were often described as lacking direction. As one woman recalled: “They just said I think you might have endometriosis. I’m going to send you to a gynaecologist. That was it.” (P11,31,2023) Women frequently reported receiving minimal information about endometriosis at this stage, and referrals were commonly made without emphasising the importance of consulting a gynaecologist with specific expertise in endometriosis: “They didn't tell me that it would be a good idea to see someone who specialises in endometriosis.” (P15,24,2023) The importance of seeing a gynaecologist with specific expertise in endometriosis was emphasised by several women. P08 believed there was limited endometriosis training among general gynaecologists, which contributed to delayed or inadequate care: “Apparently, regular gynaecologists aren't always trained in endometriosis.” (P08,28,2022) Perceived gaps in specialist knowledge were also associated with experiences of misjudgement and minimisation of symptoms. One woman described being told that the absence of extreme pain during examination was inconsistent with endometriosis: “He did an internal like exam. And he’s like, you would be screaming in pain if you were, if you had Endo.” (P04,32,2025) In contrast, some GPs actively supported referral to endometriosis specialists, recognising the risks of misinformation. As one woman recounted the words of her GP: “We see quite a few women who get the wrong information if they're not seeing an endo specialist.” (P11,31,2023) One reported example for misinformation from gynaecologists included a woman being recommended to fall pregnant to cure or manage her endometriosis: … and the whole, oh, you know, if you get pregnant, it'll kill your endometriosis, it'll make it better, and last time I was in ER [emergency room], I was told by the gynaecologist there, oh, endo loves babies, which I thought was ridiculous. (P08,28,2022) Even if pregnancy was a cure for endometriosis, women did not consider recommendations to have children as a form of treatment to be appropriate, as one woman explained: One of the things that they say is like, if you have a kid, your endometriosis apparently goes away. So it’s like, okay, try and have kids, but that’s obviously, we've had other, obviously other issues, but like your lifestyle, you can't just go out and have a child because you've got endometriosis and hopefully it goes away. (P16,34,2020) Avoiding misinformation and seeking information and care from an experienced gynaecologist was a key priority for the women. Many women described consulting multiple gynaecologists over extended periods in order to obtain a diagnosis and appropriate care. One woman described her experience of seeing multiple gynaecologists over 10 years before being diagnosed: I did see a gynaecologist here back in 2009. He was useless to say the least … my mum was … venting to her boss and he happened to know somebody in Sydney …who happens to be a gynaecologist… so then I got a referral straight to him. … and the gentleman there said it’s above him. He had to refer me on to another gynaecologist at [hospital name]…So I was always told that I had advanced chronic pelvic inflammatory disease with adhesions and abscess and all of those things and that kept reoccurring. But never once was Endo mentioned until 2022 when I saw [name of gynaecologist].(P06,34,2022) The women who did not receive a referral to a gynaecologist who specialises in endometriosis, or who were dissatisfied with previous care, often felt overwhelmed by the process of independently identifying a suitable gynaecologist to seek a referral to. One woman who had a negative experience with her first gynaecologist wanted a second opinion, so she took it on herself to find a new gynaecologist: “I was quite petrified and I was like, yep, let’s go to Sydney. Let’s find a specialist. So did the research out myself, just pretty much Googling.” (P14) The women consistently described the process of identifying an appropriate gynaecologist as difficult and overwhelming: “There’s so many out there, and you don't know which is good and which is not good…I felt, like, completely overwhelmed.” (P07,38,-) Choosing a gynaecologist depended on a variety of factors. One woman described carefully weighing insurance coverage, surgical approach and other women’s experiences: Trying to find a gynaecologist that’s covered in my health insurance, trying to find one that, you know, reading up on other women’s experiences as well. … in my head just doing my own research, going OK well, I need to find an excision specialist. I'm trying to find one timely. Trying to find one locally. (P10,37,2024) Regional limitations in the availability of gynaecologists further limited options: “We don't have many here and they weren't taking on new patients.” (P06,34,2022) The lived experiences of other women were also described as an important source of guidance when identifying a gynaecologist to seek referral to. Online reviews and social media were used to access other women’s experiences with gynaecologists: “read my Reddit … search people on TikTok … I read Google reviews religiously.” (P07,38,-) The women often chose their gynaecologist based on the consensus of other women’s experiences: Basically, I just would scroll through and look at names and I'd kind of take note of ones that popped up often and you know if there was generally a positive feeling towards this person or a mixed feeling. (P04,32,2025) In selecting a gynaecologist for referral, women emphasised the importance of not only clinical expertise but also compassionate, patient-centred care. For example, “A lot of people recommended having the excision” (P12,33,2024) and because surgical approach was so important, the women reported losing trust in gynaecologists who suggested ablation: “I lose my faith in them straight away.” (P11,31,2023) One woman described selecting a gynaecologist based on overlapping recommendations from her GP and friends: They recommended this person that I've heard good things about from friends, who have done surgery before, and I do trust my GP as well, so she said nice things about him, and how nice and compassionate he is, bedside manner is great. (P07,38,-) However, reliance on recommendations from other women’s lived experiences was not always sufficient. Some women noted limitations of informal sources, such as social media recommendation lists, with one woman recalling that her gynaecologist was not represented on these unofficial platforms: I've seen people that go on there information seeking, asking like does anyone have a recommendation for a doctor? … There’s like people that are like gung-ho there’s only 3 gynaecologists that do excision surgery in WA. My doctor is never listed on there. He does do excision surgery, and I looked up the qualifications that he has, and he’s trained in doing it.… So I find, like people can get really misleading information. (P01,29,2021) This theme highlights the challenges women face in identifying and accessing gynaecologists with appropriate expertise in endometriosis. As a result, women often described a prolonged process, relying on personal research, online sources and recommendations from other women to identify suitable gynaecologists. In response to these barriers, women expressed a strong desire for clear, accessible lists of gynaecologists who specialise in endometriosis: “You know, a list of people that you could reach out to or get referrals that specialise in that.” (P10,37,2024) The second theme highlights women’s experiences of informational support provided by their gynaecologist before their diagnostic laparoscopic surgery. The women described their experiences with pre-diagnosis consultations, as well as the main discussion points which included information about the surgical technique and recovery. Some of the women described informative consultations: “He was phenomenal. He could answer every question that I had … He also gave me leaflets, information, sent me to his webpage.” (P14,34,2020) In contrast, one woman did not meet the gynaecologist before surgery and had no opportunity to ask questions: “I didn't even get to see him.” (P12,33,2024) This left the woman seeking information online the night before surgery: The night before, and I was googling, like, the different things that they were going to do, and what happens during the surgery, because I didn't get a lot of information. (P12,33,2024) Some of the women who did have a pre-surgery consultation reported that they were not adequately informed about the surgical approach, including uncertainty regarding the specific technique that would be used: “I don't even know if I had excision or ablation.” (P03,38,2005) Another woman recounted thinking she was well prepared for surgery but afterwards being shocked by seeing the incisions: I remember the first time I woke up from one of the surgeries and I actually had no idea how many little holes I'd have in me. And I remember looking at my belly thinking, what the hell? This is horrific. It was like a war zone. (P16,34,2020) Another information gap identified by the women was in relation to recovery. One woman stated: “I think I was prepared to go into surgery. What I didn't think I was prepared for was recovery and I didn't realise how bad the recovery was.” (P16,34,2020) Women described uncertainty about what would happen after surgery and what the timeline would be: I think probably the biggest lack was what to expect in like the months after surgery. … I think information I was trying to find was like, when, like, yeah, what happens if you still get pain after surgery? (P04,32,2025) Consistent with the theme of ‘Finding a gynaecologist who felt right: navigating a complex care pathway’, limited informational support from gynaecologists led many women to seek recovery-related information from social media and online forums. While these sources were readily accessible, women reported considerable variability in others’ experiences, which contributed to uncertainty about postoperative expectations. As one woman explained, “Some people say they didn't feel right after their surgery until like 12 months after, just there’s a lot of vagueness” (P04,32,2025). However, the women acknowledged the medical uncertainty and unpredictability of recovery times. As one woman recounted having a long and difficult surgery but a short recovery time: I think it’s just all the unknown stuff. … I just feel like there’s not enough information behind it, because if you don't, like for me being caught so late, you know, I ended up with six holes in my stomach. And you know what? I went back to work after a week and I was fine. (P10,37,2024) This theme highlights inconsistencies in pre-diagnosis consultations with gynaecologists. Women identified gaps in the provision of information, particularly regarding the surgical approach and expected recovery timelines following surgery. The third theme presents women’s accounts of the informational support provided by their gynaecologist after diagnosis, as well as areas of unmet need and opportunities for improvement. Key topics discussed included understanding endometriosis, what occurred during surgery, recurrence rates, treatment options and fertility. Consistent with the theme of ‘Variance in informational support before diagnostic surgery and the uncertainty of recovery time’, the women’s experiences varied. Positive experiences were characterised by the women as thorough explanations and opportunities to ask questions. One woman described feeling well supported and informed: “she was amazing. I asked all those questions to her.” (P16,34,2020) On the other hand, another woman described having to rush a fertility-related question into the end of her appointment: “I had to really like rush that question in at the end of an appointment with my gynaecologist post having the laparoscopy.” (P15,24,2023) Some of the women received little to no information after diagnosis. One woman summarised her experience with informational support post diagnosis simply as: “Nothing. I was diagnosed and sent home.” (P09,40,2012) For one woman a scheduling error meant no follow-up occurred at all: “I had an appointment, a phone appointment, and long story short, they got it muddled up” (P12,33,2024) Since many of the women had not previously received detailed information about endometriosis, post-operative consultations with their gynaecologists provided an important opportunity to discuss the condition more thoroughly. Many of the women expressed a desire to better understand why they developed endometriosis, how the condition may have originated, and whether a cure might ever be possible. Is it something that we just have to deal with? Or is it something that eventually there might be a cure for it? But also, how did it start? When, like, what has caused this for so many people to have endometriosis? And no one knows how or why? Was it something that we ate as a child? Was it something that our parents were given as a child? Or was it our grandparents? (P13,36,2019) The women reported that understanding endometrial tissue was important to make sense of both the surgical procedures undertaken and the broader effects of endometriosis on the body. Some of the women found consultations supported by visual explanations particularly helpful. One woman recalled how seeing internal images supported her understanding of her pain: “I’m a visual person, so I felt that was really good to be able to understand what I was, you know, the reasons why I was in the pain.” (P10,37,2024) However, for others, viewing surgical recordings was confronting rather than helpful: “So it’s quite fascinating. I'm not good with seeing those sorts of things. So I didn't watch much of it, but my mum found it fascinating. So she watched all of it.” (P06,34,2022) The women mentioned other topics they wished were discussed with them during post-diagnosis consultations. One woman explained how she was confused that she did not know her endometriosis stage: Another thing that I still find confusing is, you know how they stage your endometriosis? I have no idea what stage I am in. And it’s, it’s a little bit mind-blowing to me that I don't know that. (P07,38,-) Another woman noted that information about recurrence rates of endometriosis needs to be discussed: And I feel like there’s not really a whole lot of information around the fact that it does come back and can come back so quickly to the point that you're having multiple surgeries. (P16,34,2020) Similarly, one woman added: “There’s no sort of time frame because obviously everyone’s a little bit different. … Some women go back after six months and have another laparoscopy.” (P10,37,2024) The women also felt more information about the spread of endometriosis to different parts of the body needed to be provided: Because most sources as well only say that it can grow you know, further down into mostly your bowel, and very briefly, I've seen some talk about, you know, maybe your kidneys or your bladder and whatnot, but I've talked to people online, and they've had it grow up into their lungs and all sorts of things. (P08,28,2022) Beyond understanding what endometriosis is and how it affects the body, the women had questions about and wanted information regarding treatment. Many of the women felt they were left with uncertainty and without any clear management plan: “The specialist really didn't give me too much information. He pretty much just said you're a ticking time bomb. … there’s no sort of like strategy.” (P10,37,2024) The women expressed their frustration with the lack of a standardised treatment pathway. As one woman explained: Everyone’s a little bit individualised, but there’s no sort of like straight narrative of hey, now you've had your surgery, this is a way to manage it moving forward. (P10,37,2024) The women’s accounts highlighted their motivation to find alternatives to repeated surgeries and hormonal treatment. Are there other things that I can do to manage it besides just surgery? I feel like that’s the only option you're given. So what about lifestyle things that’s never really covered? (P11,31,2023) I'm hoping there’s something else, there’s more information that or other alternatives I can try before going into having hormones put into my body again. (P12,33,2024) The women were interested in receiving information about self-help strategies to manage their endometriosis. These approaches included wanting information about “stuff around mind-body” (P03,38,2005), “heat packs, TENS machines.” (P13,36,2019), and “food, exercise, all of that.” (P13,36,2019). Information about nutrition was seen as especially important and empowering: I feel like once you have that knowledge, it’s sort of powerful because you're like, well, I know I don't feel well because I'm eating this terrible food and because I've got endometriosis. (P16,34,2020) The women’s experiences suggest information about exercise was often omitted in discussions with gynaecologists. As one woman stated: “Nobody teaches [you about] pain or … exercises that stretch. And all these doctors, they just tell you nothing” (P05,42,2001) While alternative approaches and self-management strategies lie outside of gynaecologists’ specialty, giving women options or pointing in the directions of where to acquire further information could enrich post-surgical consultations and give women a way forward. Besides treatment, fertility posed a major information need. As one woman recounted how her first question after diagnosis was in regard to being able to get pregnant: “I was just like, okay, so what do I need to do to fall pregnant? Like, that was my goal.” (P13,36,2019) However, as one woman described, while seeking information on fertility was important, the most important question was on whether you could get pregnant: You seek as much information as you possibly can because you want answers to your, like your specific questions like, and like reality is like the question is, am I gonna have a child? (P16,34,2020) Fertility was described as one of the most prominent areas where the women felt unsupported and under-informed. The women wanted nuanced, individualised discussions about fertility chances, risks and how specific conditions affect outcomes: “I think that’s like the main place where I would say there’s not a lot of accessible resources.” (P01,29,2021). Another woman explained how alongside the lack of information about fertility, concerns were dismissed. I feel like the discussions and the, you know, the risks around fertility are not discussed enough, especially in relation to the ovarian issues. It’s just mostly said, oh, if you're having trouble, just go IVF or have your endometriosis surgery. (P08,28,2022) While some women were interested in egg freezing and in vitro fertilisation (IVF) options, these were not feasible options for all of the women due to the high cost of the procedures: “I started looking into egg freezing, but it cost minimum 4 grand for one round… which I can't afford.” (P02,25,2020) Further, the woman felt there was a lack of information about how anatomy and co-morbidities affect fertility and pregnancy outcomes: And I don't think a lot of people are even aware of the fact that if your endometriosis is quite severe, like mine, and your biology is a bit all over the place, it might not just be the fertility issues, you are actually putting your life at risk, because you could be at a higher risk for getting an ectopic pregnancy. And you need to be informed of that, I find, and be told what the signs of an ectopic pregnancy could feel or look like, so you know how to get emergency care. (P08,28,2022) Overall, women’s accounts highlight that post-diagnosis consultations are an important opportunity for gynaecologists to provide comprehensive, individualised information. While some women felt well informed and supported, many described gaps that left them uncertain about their condition and disease management. Key unmet information needs included alternative treatment options, self-management strategies and fertility.

This study provides novel insights into the role of gynaecologists providing informational support for women with endometriosis. The findings emphasise that access to a knowledgeable gynaecologist specialised in endometriosis is not merely desirable but fundamental to receiving appropriate care and informational support. Prior to diagnostic surgery, the women expressed a strong need for detailed and transparent information regarding surgical options and expected recovery trajectories. Importantly, the women highlighted the need for realistic expectations to be set. Following diagnosis, the women’s informational needs shifted towards a more comprehensive understanding of endometriosis as a chronic condition, including its aetiology, progression and the range of available management strategies beyond surgery and hormonal treatments. Fertility-related information also was described by the women as a critical component, with the women expressing a need for timely, individualised discussions that reflect their personal priorities. These findings are consistent with previous research highlighting unmet informational needs among individuals with endometriosis. For example, work by Fallon et al 32 has demonstrated that patients often experience fragmented and insufficient information provision, particularly from their healthcare providers, making health-related decision-making more difficult. Similarly, Lorenzoni et al emphasise the importance of clear communication and patient-centred information in improving care experiences. 43 The present study extends this literature by specifically examining the role of gynaecologists as key providers of information, who due to their role in diagnosing and treating endometriosis have a unique opportunity to provide informational support to women with endometriosis. However, it should be noted that providing informational support prior to diagnosis is a difficult task, requiring gynaecologists to balance giving women enough information to minimise uncertainty and worry, while avoiding creating a false sense of a definitive diagnosis before this has been confirmed. Recognising and holding this diagnostic uncertainty, while still equipping women with sufficient information to understand their potential condition and what lies ahead, is a delicate but important part of clinical communication in the lead-up to diagnosis. Additionally, it is important to acknowledge that several aspects of endometriosis remain poorly understood, including its cause 44 and the relationship between symptoms and the appearance of endometrial lesions. 45 Consequently, clinicians may not always be able to provide definitive answers to all patient questions. In addition, many aspects of endometriosis care, such as treatment, fertility and recovery, are highly individualised. Although clinical guidelines and recommendations are available, 9 46 uncertainties persist in many areas of care. For example, women in this study frequently expressed a preference for, or belief in the superiority of, excision surgery over ablation. However, evidence on the superiority of one surgery approach remains insufficient. 47 48 Moreover, the choice of surgical technique is not solely a matter of comparative efficacy, but benefits and harms should be discussed with affected women. 10 The perceived superiority of excision expressed by some of the women in the current study may therefore reflect how patient-facing misinformation or oversimplified information can shape patient expectations and preferences. Transparent communication regarding these uncertainties, including the evidence base (and its limits) for different surgical approaches and treatment options, is therefore essential to avoid creating unrealistic expectations or the perception that information provided is inaccurate or misleading. It is important to situate these findings within the Australian healthcare context. In Australia, GPs act as the initial point of contact and ongoing monitoring of the condition, with gynaecologists typically leading the diagnosis and treatment plan for endometriosis. 49 Consequently, access to specialist informational support is structured around this referral pathway. This system, combined with variable out-of-pocket costs and a mixed public–private healthcare landscape, may extend and complicate women’s journeys toward finding a gynaecologist with appropriate endometriosis expertise, as reflected in Theme 1. Notably, difficulty navigating multiple GPs and gynaecologists prior to a diagnosis and treatment has been recognised as a broader systemic issue in Australia, with people with endometriosis reporting often having to see several GPs and gynaecologists prior to getting diagnosis and treatment, prompting the development of the Australian National Action Plan for Endometriosis and associated clinical practice guidelines to improve diagnostic pathways and care consistency. 49 These structural features may not be shared by countries with different referral systems, where GPs do not have the same gatekeeper role, 50 and may shape both the nature of the barriers women encounter and the kind of informational support gynaecologists are positioned to provide. As such, while the informational needs identified in this study likely resonate with women’s experiences internationally, the specific pathways and delays described here should be interpreted with reference to the Australian referral and funding context, and comparative research across healthcare systems would help clarify which aspects of these findings are context-specific vs more broadly generalisable. The findings may have certain implications for clinical practice and future research. First, based on the women’s accounts, there is a need for structured professional development opportunities to strengthen gynaecologists’ expertise in endometriosis care. The variability in the women’s experiences suggests that current systems do not consistently support women or GPs in identifying gynaecologists with specific expertise in endometriosis. This may contribute to delays in diagnosis and care, as well as sub-optimal informational support. Establishing a transparent and nationally consistent framework for recognising advanced training in endometriosis care could help address these challenges. Further, the development of a publicly accessible register may enable women and referring GPs to identify gynaecologists with relevant expertise, thereby supporting more informed and efficient referral pathways. Specialised endometriosis clinics provide another useful model for identifying healthcare providers, including gynaecologists, with specialised expertise in endometriosis care. These services often offer multidisciplinary care 16 51 that reflects the complex and holistic needs described by the women in this study. In Europe, formal certification processes have been introduced to support and standardise the quality of care provided by specialised endometriosis centres. 52 53 The adaptation and broader implementation of similar certification frameworks may offer a valuable strategy for improving the consistency and quality of endometriosis care internationally. Specialised endometriosis clinics may serve as clear entry points to appropriate expertise while also providing more comprehensive informational and supportive care. However, access to such services remains limited. Expanding their availability, alongside establishing clearer pathways for gynaecologists to develop and demonstrate specialised expertise in endometriosis, may enhance confidence in care, improve equity of access and better support women in navigating the healthcare system. While existing research has largely focused on GPs’ knowledge and understanding of endometriosis, 28 – 30 future research is needed to examine gynaecologists’ knowledge and their perceptions of their role in providing informational support. Gaining insight into clinician perspectives is essential for identifying barriers to effective communication and informing the development of guidelines that promote more consistent, patient-centred information provision. This study has several strengths. To our knowledge, it is among the first to specifically explore the role of gynaecologists in informational support for endometriosis, offering detailed insights into what information is being provided during conversations between gynaecologists and women with endometriosis and how informational support could be improved in this context. By centring women’s perspectives, challenges such as the need to consult multiple gynaecologists become apparent. However, several limitations should be acknowledged. As the data are based on retrospective accounts, there is a potential risk for recall bias, particularly for women who were diagnosed several years prior to the study. These individuals may not accurately remember the specific information provided or the questions they had at the time. Additionally, as with all qualitative research, the findings reflect individual experiences and perceptions, which may not be universally generalisable. Nevertheless, these accounts provide valuable insights into women’s lived experience and their information needs. In conclusion, this study highlights how women perceive gynaecologists as a central figure in the provision of informational support for women with endometriosis. Further, the women described important gaps in the informational support they received. Addressing these gaps through structured professional development opportunities to enhance gynaecologists’ expertise in endometriosis care, alongside further research into gynaecologists’ perspectives, may improve informational support and advance patient-centred care.