The needs,preferences,and priorities for supportive healthcare in people living with endometriosis: A qualitative exploratory study

Abstract

Although pain, poor quality of life and symptoms of anxiety and depression are common in people with endometriosis, consumer views regarding supportive care needs are limited. Using a descriptive phenomenological approach, three focus groups were conducted with 12 participants with endometriosis to understand their needs and priorities for supportive evidence-based healthcare. Template thematic analysis identified three overarching themes: (1) Endometriosis Is a Whole Person Disease, highlighting the physical and psychological challenges of endometriosis; (2) Current Gaps and Unmet Needs – The Disparity Between Individual Requirements and Available Services and Support, emphasising the impact of healthcare practitioner interactions, financial constraints, and information requirements; and (3) Endometriosis Needs Whole Person Solutions, identifying the need for interdisciplinary, person-centred care to enhance individual empowerment and healthcare decision-making. Given the high costs of healthcare and limited availability of practitioners familiar with endometriosis and whole-person approaches, development and evaluation of online supportive care programs may be beneficial.

Introduction

Endometriosis is a chronic condition in which tissue similar to that lining the uterus grows on other organs, and can be associated with pain, menstrual irregularities, and infertility (Horne and Missmer, 2022). It is estimated to affect 190 million reproductive-age persons with a uterus worldwide, with approximately 14% of Australian women and those assigned female at birth diagnosed by age 49 (Australian Institute of Health and Welfare (AIHW), 2023). Despite this, endometriosis is under-recognised and under-researched globally, due to symptom heterogeneity, reliance on surgical diagnosis, limited awareness and access to care, under-funding and menstrual stigma (Eitze and Reinhardt, 2025; Giudice et al., 2023; Munshi and Gajbhiye, 2025). Diagnosis can take up to 8 years (Armour et al., 2020) and the annual direct costs in Australia reach nearly $10 billion (Armour et al., 2019). Biomedical interventions, such as hormonal management and analgesics are frequently inadequate and people want other options for effective therapeutic care (Sinaii et al., 2007). Research by Evans et al. (2022) demonstrated that while 97% of those with endometriosis relied on pain relief medication, only 24% were completely satisfied with this treatment, with preference for interventions that support whole-person health. Laparoscopic surgery to treat endometriosis may be performed, but symptom and/or disease recurrence is common, with more than 50% of people experiencing repeated surgical intervention within 5 years (Saraswat et al., 2018). Given that pain, poor health-related quality of life (HRQoL) and symptoms of anxiety and depression (Gambadauro et al., 2019; Szypłowska et al., 2023; van Barneveld et al., 2022) are common in people with endometriosis, there is clearly a need for supportive care that goes beyond current biomedical treatments.

Recognising the limitations of biomedical approaches in managing the whole-person impacts associated with endometriosis, the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) recommends interdisciplinary management (RANZCOG, 2025). In addition, the Australian National Action Plan for Endometriosis (NAPE; Kelson et al., 2019) has highlighted the need to address the complex psychosocial burden of endometriosis via interdisciplinary person-centred care. However, current healthcare for endometriosis falls short of these recommended standards, with inconsistencies noted across interdisciplinary care models and limited evidence of patient codesign and lived experience data to inform care development and implementation (Andrews et al., 2025). Although the Australian Endometriosis Clinical Practice Guideline (RANZCOG, 2021) acknowledges that supportive care works, recent research confirms that access to it for those with endometriosis is limited (Evans et al., 2022). Moreover, research exploring consumer views on what constitutes supportive healthcare, and how care should be designed to address their needs, is notably lacking.

Therefore, this study aimed to explore the supportive healthcare needs of people living with endometriosis, to help inform healthcare redesign. The study attempted to answer the following research question: What are the needs, preferences, and priorities for supportive evidence-based healthcare in people living with endometriosis?

Methods

Design

A qualitative, descriptive phenomenological approach (Husserl and Moran, 2012) was used to explore the lived experiences of people with endometriosis with the aim of gaining insight into their needs, unmet needs, and preferences for supportive, evidence-based healthcare. We followed the consolidated criteria for reporting qualitative research (See Supplemental Information).

Theoretical framework

A critical realist framework was applied, which assumes an objective reality exists, whilst recognising that research knowledge is interlinked with, and partially constructed by, the perceptions and perspectives of the researchers (Braun and Clarke, 2021). This approach was complemented by a feminist standpoint, which in combination recognises the empirical reality of living with endometriosis (e.g. pain), while also understanding that social, cultural and structural factors, such as gendered assumptions, healthcare, medical biases and stigmatisation influence and shape this experience. Given the paucity of qualitative studies examining supportive healthcare needs of people living with endometriosis, an inductive thematic analysis approach was undertaken, allowing the participants’ express needs, and priorities to guide the identification and development of distinct patterns and themes (Braun et al., 2022).

Study setting and recruitment

Convenience sampling was used to recruit participants, to include individuals meeting the eligibility criteria. Recruitment was conducted by advertisement via social media (e.g. Facebook, Instagram), websites and newsletters of professional consumer organisations (e.g. EndoHelp, EndoZone). Interested respondents contacted the research team via email and were sent a link to a Qualtrics survey containing study information, screening questions and informed consent. Participants provided documented evidence of their diagnosis (e.g. letter from their doctor, histology results, operation reports) to determine eligibility.

Inclusion criteria

Individuals were eligible to participate if they were English speaking adults (⩾18 years) presumed female at birth, with a medically confirmed diagnosis of endometriosis, having access to the internet, and residing in Australia. Individuals were ineligible to participate if they did not meet all of the inclusion criteria. No other exclusion criteria applied.

Data collection

Data was collected using focus groups, to encourage meaningful discussion and interaction amongst participants, facilitate exploration of shared perspectives and ideas, and gather rich experiential data. Three focus groups were conducted via Zoom video conferencing with six participants attending the first focus group and three participants attending each subsequent focus group (n = 12). The duration of each focus group ranged from approximately 70 to 85 min. Each session was audio recorded (with participant consent), transcribed via Zoom, and manually corrected by the research team. An experienced facilitator conducted the focus groups using an a priori interview guide and was accompanied by a research assistant who provided technical support. Participants were informed that the study was part of the primary researcher’s doctoral research. Example questions included: What strategies or treatments have been helpful in managing your endometriosis symptoms? How can we better support you and others living with endometriosis? Transcripts were not provided to participants for review or comment. Consistent with Braun and Clarke’s (2021) guidance on thematic analysis, the aim was not to reach data saturation, but rather to generate rich, and nuanced data, prioritising depth and diversity of meaning over breadth or representativeness. The number of groups and participants was guided by the concept of data sufficiency (Braun and Clarke, 2021) – that is, having enough data to support detailed and insightful interpretation. The size and composition of each group allowed for dynamic discussion and a range of perspectives, while remaining small enough to enable all participants to contribute meaningfully. Given the exploratory nature of this study, the sample size was deemed appropriate and sufficient for the analytical goals. Demographic and endometriosis-related health data were gathered via a self-reported demographic questionnaire. No repeat focus groups were conducted.

Data analysis

Template thematic analysis was used to understand patterns of meaning and relationships across the transcripts (Brooks et al., 2015) and involved: familiarisation with the data through several readings (SC); preliminary coding (SC); organising developing themes into clusters (SC, SE); defining an initial coding template (SC); applying the template to the data and refining as necessary (SC, SE, AMW); and finalising the template and interpretation (SC, SE, AMW). Data were managed using Microsoft Word and Excel. To support rigour and consensus on themes, 10% of the data were independently coded by a member of the research team not involved in data collection (AMW) at step 3. Throughout the process, any discrepancies were discussed and resolved amongst team members (SC, SE, AMW). See Supplemental Information for further details.

Ethical considerations

The study was conducted in accordance with the Declaration of Helsinki. Ethics approval was obtained from the Deakin University Human Research Ethics Committee (Ref. 2023-206). All participants received a $50 e-gift voucher as compensation for their time and contribution. Potential response bias resulting from financially motivated participation or social desirability was minimised through having specific eligibility criteria, providing the gift after completion of focus groups and ensuring the value of the gift was not excessive considering the time and effort involved.

Reflexivity

The research team included people with lived experience of endometriosis and/or chronic pelvic pain, experience working therapeutically and/or research experience with endometriosis populations. Accordingly, the researchers acknowledge the potential for personal biases in interpreting the participants’ responses. Further, the primary researcher is a female PhD candidate with early research experience in endometriosis, training in qualitative analysis, and who acknowledged empathising with participants’ experiences whilst conducting the focus groups. Reflexive journaling was used to examine personal assumptions, beliefs and ideas and their potential influence on interpretation of the data. Debriefing sessions were held to discuss any concerns. To increase rigour and trustworthiness, notes were kept during data analysis, codes and themes were iteratively revised, and relevant participant quotes were presented in the results.

Results

Participant characteristics

A total of 12 participants completed the study. Twenty-two individuals originally expressed interest in attending the focus groups, with four excluded due to insufficient evidence of diagnosis and three lost to follow up. Fifteen participants completed the self-reported demographic questionnaire, with three participants unable to attend on the scheduled focus group dates.

Participants had a mean age of 36.8 years (SD = 9.12; range: 22–55 years). Most participants were born in Australia (91.7%), university educated (58.3%) and resided in Victoria (75.0%). Geographically, participants were located across four states and included metropolitan (58.3%), regional (25%), and remote (16.7%) representation. The most common disease stage classification was stage IV (58.3%) and the average number of years since diagnosis was 7.58 years (SD = 9.64, range = 1–34 years). See Supplemental Information for further demographic information.

Qualitative results

Three overarching themes were identified. See Supplemental Information for the study thematic map. Important findings, along with supportive participant quotes, identified with demographic information, are summarised below.

Theme 1: Endometriosis is a whole person disease

Participants reported a range of physical, emotional, and social difficulties living with endometriosis, recognising the pervasive nature of their condition as “a whole-body disease” (36-year-old woman).

Subtheme 1.1: Physical and functional challenges

A pressing physical concern was pain, which impacted all aspects of living. For several participants, physical pain was a daily challenge leading to struggles with being present or fulfilling roles with family, work, or friends:

If you suddenly get an onset and you don’t have time to leave the classroom, or someone can’t come in to cover you, and you just get that sudden nausea and pain (32-year-old woman).

Analgesics such as opioids, along with hormonal treatments, were the most widely used pain management approaches, even though some reported exacerbation of pain associated with hormonal contraception use. A small number of participants had seen a pain specialist or pelvic physiotherapist; however, these providers were reportedly inaccessible for most. Others utilised self-management techniques (e.g. heat packs, TENS machine). Most participants noted varying or diminishing relief from current pain management approaches, with pain continuing or increasing over time, suggesting a need for more effective pain management solutions.

Participants also experienced a range of other debilitating physical symptoms including gastrointestinal disturbances (e.g. diarrhoea, bloating), bladder issues, heavy menstrual bleeding, vomiting, and nausea. Participants reported their concerns were often dismissed or downplayed by medical providers when seeking care to alleviate symptoms. They also reported feeling overwhelmed and frustrated with managing the inconsistency and unpredictability of endometriosis-related physical symptoms, noting the significant impost and interference on work and interpersonal commitments:

You know this daily pain, daily constipation, daily diarrhea, bleeding. Some days are tougher than others and you just want to crawl back into bed. But you can’t (33-year-old woman).

Participants recognised the close link between pain and psychological distress, noting ‘if I have a lot of pain, my mental health deteriorates very quickly’ (45-year-old woman). Others described the stress of ‘pushing though’ with pain or having to meet daily obligations, despite feeling physically and emotionally drained:

I was doing the best I can. But it still wasn’t enough. I think I have more to contribute to than that (28-year-old woman).

Fatigue was another difficult symptom reported, with participants describing physical exhaustion from persistent or severe pain or other incapacitating symptoms. Others described the negative consequences endometriosis-related fatigue had on their emotional wellbeing and the impact this had on pursuing life opportunities:

Having a chronic illness is emotionally challenging. It’s draining. it affects relationships, work relationships, family relationships, friends (55-year-old woman).

Thus, participants clearly indicated the need for both physical pain relief, as well as mental health support.

Subtheme 1.2: Psychological challenges of living with endometriosis

All participants described psychological and emotional challenges associated with endometriosis, including symptoms of stress, anxiety, guilt, overwhelm, inadequacy, and self-doubt, noting ‘you just don’t know how long I can live with this’ (37-year-old woman).

Participants also described negative emotional responses such as frustration and helplessness when dealing with ineffective treatments and/or limited information to help manage their endometriosis-related concerns:

Then, once you’re diagnosed, then where do you start? Because even that’s overwhelming, because you feel like you’ve got the answers, but then you have to think about what’s next, because everything’s just a Band-aid (36-year-old woman).

Some described a sense of disappointment and loss, experienced through failed relationships and missed opportunities. Others reflected on unmet life expectations and the impact of this on their emotional state:

My life has turned out very differently to what. . .me and my parents envisioned. So that was quite hard for me to handle (37-year-old woman).

Participants also described varying challenges associated with fertility and intimacy, with many participants struggling with the psychological impacts associated with fertility-related grief and loss:

I think my mental health really deteriorated with my infertility experiences as well. I went through a lot of loss. . .I’ve had 6 pregnancy losses and 2 early births and a stillborn, and I still don’t have any babies to hold (45-year-old woman).

For one participant, coping with the physical and psychological burden of living with endometriosis culminated in thoughts of suicide, highlighting critical gaps in the availability, and accessibility of appropriate mental health support:

After my second surgery, and then, when my pain came back, I think I just lost it. I think I lost my shit. It was the first time in my life that I felt like maybe it’s better if I just didn’t live anymore (37-year-old woman).

Uncertainty related to fluctuating and unpredictable symptoms resulted in emotional stress for many participants. Uncertainty also significantly impacted the level of perceived control participants had over their ability to plan and manage their day-to-day living, leading to feelings of exasperation and worry:

But yeah, being prepared, because you never know your day just might get a lot worse or something (22-year-old non-binary person).

Difficulty living with an array of challenging emotions, and uncertainty related to fulfilment of key life tasks, further emphasised the need for improved psychological coping strategies, and tools.

Theme 2: Current gaps and unmet needs – the disparity between individual requirements and available services and support

Subtheme 2.1: Quality of healthcare experiences

Subtheme 2.1.1: Health care practitioner communications and interactions

Participants reported challenges regarding the quality of interactions with their health care practitioner (HCP), at both the general practitioner (Thompson et al., 2019) and specialist level. Some reported feeling unsupported during consultations, whilst others expressed concerns with perceived insensitive or disrespectful communication styles:

It just doesn’t even occur to these specialists and surgeons and gynaecologists. But you are talking about real things, real people. Yeah, just the flippant conversations. Really have thrown me (40-year-old woman).

Most participants felt they were not believed, listened to, or understood by HCPs when discussing their symptoms and concerns. Some participants reported that pain or other difficult symptoms, were often normalised, being told ‘there was nothing wrong’ (36-year-old woman). These experiences of dismissal and invalidation commonly led to prolonged physical and emotional suffering, delays in accessing treatment and perceived ‘damage’ to their bodies. Importantly, participants felt that not being listened to by HCPs was the primary reason for misdiagnosis or diagnosis delays. Many participants described their frustration at the time taken to confirm their condition, often resulting in long-term impacts on overall functioning, along with a sense of ‘time wasted’ (40-year-old woman).

Diagnosis challenges were also viewed as barrier to receiving timely and effective treatment, leading to increased mistrust of HCPs and reduction in overall HRQoL. Ultimately, participants desired greater empathy and recognition when interacting with their HCP to feel understood and optimally supported:

You need to not feel alone, even if the person who’s supporting you isn’t going through what you’re going through. It’s just a human connection rather than you’re just a patient (28-year-old woman).

When discussing how supportive care could be improved, participants reinforced the importance of being listened to and believed. Participants also expressed the need for improved education and training for HCP’s, especially GPs, and greater individual and societal knowledge of endometriosis and pelvic pain. Collectively, feeling dismissed and invalidated and not having access to appropriate endometriosis-related advice, negatively influenced the perceived quality of healthcare relationships and compromised individual treatment decisions in the longer term.

Subtheme 2.1.2: Treatment and healthcare management needs

Participants expressed concerns regarding their current healthcare management, especially the availability and efficacy of treatments and support. Hormonal treatments were most commonly prescribed, and participants were worried about the potential negative side-effects on their mental and emotional wellbeing, along with possible interactions with other medications, indicating a desire for alternative therapeutic options. Many participants had tried (and were open to) different combinations of therapeutic modes including medical, pharmaceutical, allied health, and alternative treatments, observing that the most effective outcomes were achieved using multiple approaches:

Heat pack pretty much every day. And next week I’m going to see a pelvic floor physio. I’m going to give that a try. I’m on Slinder [sic] and Endep to try calm the pain down. And I’m looking at another surgery probably in the New Year (33-year-old woman).

Several participants noted that variability in treatment effectiveness and time taken for treatments to work made it difficult to select optimal approaches for symptom management. Others felt uncertain about what treatments, (if any) were useful:

I’m sceptical about everything, because I don’t know what’s working. I don’t know if the pelvic floor physio is working because I’ve also got this Mirena and Slinda, and I don’t know what’s doing the trick (40-year-old woman).

Some participants expressed feelings of frustration and hopelessness when symptoms returned following treatment, especially after surgical interventions, with one participant reporting undergoing seven surgical procedures to manage their endometriosis. Others indicated that treatment in general was overwhelming, whilst some felt they had exhausted all options, suggesting a need for improved supportive care solutions to optimise health and QoL.

Subtheme 2.2: Navigating the healthcare system

Participants described numerous challenges navigating the healthcare system, which impacted their ability to identify and utilise high-quality care. Participants observed that poor links with services and lack of referrals between HCPs, compromised access to the appropriate treatments options:

Like how do you even get started, without having to spend 10-20 years going from GP to GP? Or getting referrals to specialists that might not be the right ones. Connecting you with the right people (36-year-old woman).

Although some noted that the fragmentation of services may be due to limited knowledge,: ‘My doctor has no recommendations for specialists. I did the all the research myself’ (40-year-old woman), one participant observed that potential disharmony between healthcare disciplines may be the cause:

I would have loved if I didn’t have to do so much research myself on this disease. But I have to, because even though I’ve got a good GP, now, she disagrees with a lot of the. . . you know. I tell her I’ve gone to see a dietitian, and she rolls her eyes a bit. And you have to be strong. You have to back yourself (40-year-old woman).

Many recognised the benefits of being able to afford specialised care, and the potential disadvantages for those who could not meet private healthcare expenses. Other barriers to accessing specialised care included geographical limitations and specialist wait times. Concerns regarding public healthcare included the quality and appropriateness of care, and consultation length. Similar to private care, access to allied health, pain specialists, and alternative therapies were ultimately limited by cost:

Yeah, but also just having access as well, cause I agree with having access. I’ve been recommended to do pelvic floor physio, and also, a dietician specialist all these types of things. But again, it just loops back to money (28-year-old woman).

Subtheme 2.3: Financial impacts of disease – burdens and constraints

The financial impost of managing endometriosis was a significant concern for participants across all focus groups. Most reported that standard endometriosis healthcare was financially burdensome with costs of treatments, medications, GP, specialist visits, diagnosis, and other out-of-pocket health-related expenses contributing to ongoing financial hardship:

My vitamins. My pain relief Just Nurofen, Panadol. Heat packs. Ten’s machine It goes on and on, and there is no – I just keep finding there’s nothing free in Australia, in healthcare, with this. I’ve got a chronic disease management plan from my GP. But I had to ask. It wasn’t offered to me. So I use 2 visits to see a dietician, 3 to see the pelvic floor physio. And now I’m just out of pocket. So I just keep paying myself (40-year-old woman).

Alternative treatments and lifestyle supports were often viewed as cost prohibitive and inaccessible, leading some participants to forgo effective treatment options. The cumulating burden of financial stress on other life expenses was noted as a major concern for some participants:

I would say that’s where most of my money goes. . .appointments as well as Allied health. I guess, exploring things that you know might help, like physio, naturopath, all those sorts of things. And then medications too, I guess. Yeah, I’ve I sort of noticed talking to other friends sometimes, and feeling, Oh, where does all your money go? And I think really looking at finances, that is where huge amount of spending goes for me. . . (28-year-old woman).

The provision of government rebates through Medicare were viewed as insufficient to alleviate financial pressures. For those who could afford private health insurance, the cost of endometriosis specialists and out-of-pocket medical expenses were still a source of financial stress:

And even, I find, private health still doesn’t cover that much with surgery. And then, you know, I have to pay for acupuncture, take herbs and with all of these you don’t really get much money back with private health, and there are a lot of out-of-pocket costs (37-year-old woman).

Subtheme 2.4: Information and resource needs

Participants identified several challenges accessing endometriosis-related information for themselves, their supports, and other family and friends. Most expressed dissatisfaction with the lack of information provided from HCPs, especially at the early stages of their endometriosis journey, leaving participants unable to make informed treatment decisions, unsure of symptom management, and when to seek help:

You have this condition, and that’s. . .I think, even after my first surgery, I was not even aware that endo could come back. I was 18 when I had that, and it was just sort of was this surgery, in and out. And then I kind of had to piece everything together, like why am I still getting all of this when I was told that: “Hey, you have this thing called endometriosis, we got rid of it. So, you know, everything’s good now” (55-year-old woman).

Several participants were concerned about the complexity and accuracy of information sources and often conducted their own research to identify concise, relatable material to address their health-related queries. Participants expressed the need for greater information on understanding endometriosis and its associated impacts, symptom management, treatment options, and service support:

When I got diagnosed, it was like, “Yeah, okay, well, you’,ve got endo”. But there was no after care, or [suggestions] like these are places you should probably connect with, or these are things that can help you, these are services that are looking after women with endo, these are things you can look into, none of that (32-year-old woman).

The internet and social media were identified as common sources of information, with some participants relying on support groups to access health-related information, whilst others described the value of connecting with peers to find resources that they needed:

. . .all of the helpful resources and tools, information or supports that I’ve found have been through like this hidden network of codes. It’,s kind of like women carrying tampons around, cause they know someone will need one. Somehow someone will pick up on something you say, figure out you have endo, and then be so generous with their time and resources because they understand. . . (36-year-old woman).

Although information-seeking online was viewed as positive, the potential risk and possible impacts on mental health were acknowledged:

I find that in those Facebook groups which I don’t check that often anymore, because opinions are very strong. And actually it scared me to take Slinda and Mirena (40-year-old woman).

Participants also highlighted the need for information supports for family, friends, and work colleagues to help bridge current knowledge gaps.

Theme 3: Endometriosis needs whole person solutions

Subtheme 3.1: Holistic, interdisciplinary, person-centred care

Participants felt that as a whole-person disease, effective endometriosis management requires whole-person solutions:

I think anyone with endo would know how much it needs a multidisciplinary kind of approach (28-year-old woman).

Current practices, such as managing pain with hormonal treatments (without considering side-effects), recurring symptoms following surgery, and lack of prioritising mental health and HRQoL all underscored the need for holistic, proactive care. Participants also acknowledged their needs for supportive healthcare changed over time, in line with the severity, progression, and ‘flares’ associated with their endometriosis. These differing individual responses, highlighted the need for person-centred treatment approaches:

And I’ve obviously attempted multiple treatment options that have got different side effects. And I’ve just had to basically pick, which is the best option for me. And it’s not a perfect option, but it is what I see is the best option for me. But part of that has been being given all the information (40-year-old woman).

At a system level, participants desired greater recognition and support from HCPs and the Government more broadly, partly to address the exorbitant costs associated with endometriosis, but also to facilitate equitable access to care. Some participants suggested that endometriosis should be formally ‘recognised as a chronic disease’ and managed under the National Disability Insurance Scheme. By having endometriosis recognised by government bodies, participants saw this as a positive opportunity to access rebates, better information, and affordable services.

Several participants highlighted the importance of connecting with others living with endometriosis to share similar challenges and struggles. Some participants felt this helped them to feel validated, seen, heard, and less alone. Many expressed utilising peer support networks as their primary source of information about endometriosis symptoms, referrals to specialists, treatment options, side-effects, and pain management. Most believed that peer support was integral to their overall care strategies and management plans:

a peer support type program. . .I know for myself, I was really young when I was diagnosed. I didn’t know really what endo was or what, I kind of barely heard of it. And no one in my family knew what it was. And yeah, I sort of found most knowledge from connecting with other people, whether it was Facebook, Instagram, that sort of thing, trying to figure out, ‘what is this thing?’ (28-year-old woman).

Subtheme 3.2: Effective solutions – healthcare treatments and management

Access to informed, supportive specialists and endometriosis-specific knowledge was considered critical ‘so that I can make an informed decision on what’s the best decision for me’ (40-year-old woman). Participants also acknowledged that supportive and positive HCP relationships played an important role in helping them to understand and navigate the impacts of living with endometriosis:

My specialist has given me the information, and we go through the pros and cons. But they’re not that willing to discuss it necessarily. But thankfully the endocrinologist and the older female GP that I now have, have been amazing (46-year-old woman).

Most participants perceived there was an awareness gap regarding available support services, and reported the need for accessible, evidence-based resources to support their physical, emotional and social health:

GPs don’t necessarily have time to spend a lot of time discussing it. And frequently they don’t have the knowledge. But it would be very handy once you were diagnosed if you were given some sort of a list of supports, a list of things, like places you could go to, things you could do. . . if you could have some sort of consolidated information where you can go for support it would be exceptionally helpful (46-year-old woman).

Several participants expressed the desire to have additional advocacy support. This included supports to help manage difficult conversations and build awareness in workplace environments: ‘something on how to navigate the professional [workplace] setting. I hear people all the time losing jobs over chronic pain. But so many women [are] dealing with this’, (36-year-old woman), as well as access to specialist healthcare support to help guide and advise individuals, ensuring they receive the healthcare they need:

And I’ve always thought that having a health advocate that understands endo. Because I find it particularly difficult being a gendered syndrome or disorder, it can be stigmatizing and also uncomfortable to kind of constantly go in and advocate for yourself, especially when you don’t know how the health professional is going to respond to you. Or how they’re going to mostly gaslight you and tell you that nothing’s wrong. So having someone that has the energy and fight to [do] that would be an amazing resource (36-year-old woman).

In describing challenges of living with endometriosis, participants also reported positive experiences with different treatments approaches, providing insight into potential options for supportive care. Surgical interventions, such as excision surgery and hysterectomy, alleviated pain for many participants, however there was acknowledgement that this was not a long-term solution for all:

I had a hysterectomy about a year ago to deal with my endo. I know it’s not the cure for everyone, but it did work really well for me. I’ve been pain free for a year (32-year-old-woman).

Continued access to knowledgeable, affordable endometriosis-specialists was considered important for ongoing care. Despite several reported challenges, hormone-based treatments and pain medication continued to be used by most participants, indicating the need for continued affordable access to these treatment options:

. . .in the past few years, I’ve been seen through a pain clinic. So, I can now be prescribed things like opioids from my GP. Which just felt completely inaccessible in the past few years. . .I think being able to. . .have access to [it]. Because it’s not at all manageable without [it], in terms of having Panadol and all of that sort of thing (28-year-old woman).

Access to pain specialists, psychologists and pelvic floor physiotherapists were considered especially useful by those who could afford it, to help manage pain, and cope with psychological concerns: ‘I found a psychologist who specialised in chronic pain and that was exceedingly helpful’ (46-year-old woman). Alternative and complementary therapies, including herbal medicine, dietary modification and acupuncture, were also considered useful: ‘I see a chiropractor, and he does acupuncture on me, and it does help a lot, right’ (55-year-old woman).

Subtheme 3.3: Effective self-management and coping strategies

Interpersonal and social support was of paramount importance to help participants cope with the physical and psychological impacts of endometriosis and provide emotional understanding and practical assistance:

I was really lucky, my partner and now husband, he’s been really supportive and has always believed me when I have had flare ups. So he’s seen it first-hand. So that was a great support for me (32-year-old woman).

Participants also acknowledged the need for increased education, resources and supports for their support networks including understanding symptoms and their impacts, treatment options, and care plans.

Establishing a routine for life-style behaviours helped to minimise the uncertainty associated with endometriosis for some participants. This included planning and preparing medication and supports in advance (‘Endo packs’), managing food and diet and physical activities:

and just having a good routine. It’s really easy when you’re tired to maybe not have a good kind of routine for food or just general lifestyle. And so, it’s good to sort of have a plan. And it kind of, you know just makes it easier (22-year-old non-binary person).

Planning in advance and establishing regular routines helped to instil a greater sense of control in participants, reduce distress, and assist with managing daily disruptions resulting from the unpredictable nature of the condition.

Some participants noted the importance of physical activity and dietary management to improve day-to-day functioning, decrease pain and enhance mental wellbeing. Mind-body approaches were highlighted as effective self-management strategies:

I think certainly some of the meditation and the mindfulness helps to calm my nervous system along with gentle exercise (46-year-old woman).

Finally, participants acknowledged that cultivating resilience, learning to accept endometriosis and its impacts and exploring alternative life goals were all important factors in coping and maintaining wellbeing. Recognising limitations and adjusting expectations were also seen as important coping tools. Participants reported developing resilience through effective symptom management, adapting to difficulties and managing challenging thoughts and feelings:

Everyone on this call is incredibly resilient to just show up every day, as far as I’m concerned. That’s kind of a challenge that we live with with [endo], and don’t have a choice not to. I think a lot of us would come up against people or deal with people day-to-day that have no idea that extra layer is there, that we’re already navigating in the background (36-year-old woman).

Discussion

Although research focussed on the lived experience of endometriosis is increasing (Young et al., 2015), understanding the key research and treatment priorities of people living with endometriosis (Armour et al., 2023) and consumers’ views on supportive care for endometriosis remains scarce. The lack of consumer perspectives on supportive care for endometriosis is surprising given that both the NAPE (Kelson et al., 2019) and the National Strategic Action Plan for Pain Management (Australian Government, 2021) stipulate that consumers should be given a strong voice in the design and delivery of services. Working within the biopsychosocial paradigm to reflect the many endometriosis symptoms and their complexity, the present study attempted to understand the whole-person supportive healthcare needs amongst those living with endometriosis.

Participants described the debilitating and often multifaceted physical and psychological impacts of endometriosis on all aspects of life, affecting their personal, professional, and social functioning, consistent with previous research (Gete et al., 2023; Grogan et al., 2018; Moradi et al., 2014). Findings highlighted the far-reaching effects of endometriosis on the whole person and emphasised the need for adaptive biopsychosocial supports. When discussing treatments and services perceived as important for the management of endometriosis, many participants referred to biomedical approaches such as surgery, hormonal therapies, and analgesic medications. However, when asked about other management approaches, participants indicated that pain specialists, psychologists, and pelvic floor physiotherapists were especially useful, aligning with evidence-based guidelines (RANZCOG, 2025). The importance of lifestyle modifications such as physical activity and dietary management to improve day-to-day functioning, reduce pain and bloating and enhance mental health was reported by some participants. Psychological and mind-body approaches were also highlighted as beneficial and have been given greater emphasis in practice guidelines and research, as effective for cultivating resilience, learning to accept endometriosis, and its impacts and exploring alternative goals and life-plans (Del Pino-Sedeño et al., 2024; RANZCOG, 2025). Allied health and lifestyle supports were broadly seen as positive contributors to the development of self-management and coping strategies and an integral part of person-centred, holistic approaches to treatment and care (Crump et al., 2024; Fang et al., 2024).

Despite the identification of persistent, whole-person challenges, participants described significant gaps and concerns with the availability and accessibility of current healthcare services for endometriosis, which were perceived as inadequate and insufficient to meet individual needs. Effective implementation of supportive care approaches is dependent on HCPs knowledge of endometriosis, available models of interdisciplinary care, and an understanding of the unique and complementary role that allied health and alternative therapy can provide (Andrews et al., 2025; Malik et al., 2022). Participants in the current study, and prior studies, have commented on the poor knowledge, and understanding of endometriosis among HCPs they interact with as a key barrier to accessing different treatment options, as well as receiving timely and effective diagnosis and care. Participants also expressed a desire to have accessible, evidence-based knowledge and resources (Davenport et al., 2023; Ellis et al., 2024) to help them make informed decisions about their treatment choices. This could be achieved via online self-directed means, through the increasing number of evidence-based, and consumer informed, endometriosis web-based platforms. This online solution may also help to facilitate conversations between those with endometriosis and their healthcare team, as well as educating and informing the families of those affected by endometriosis (Li et al., 2024; Sirohi et al., 2024). This was further supported by findings in the current study, where participants often commented on the value of education for those closest to them, in addition to their HCPs, and their employers.

A prevailing theme in the present study, and consistent with existing findings, was the lack of affordable healthcare (Armour et al., 2022) within Australia, which reflects broader global findings (Barik and Duddi, 2025). Participants reported struggling to afford all the required examinations and treatments and, due to the highly disabling nature of the disease, suggestions were made on improving the current rebate scheme for those with endometriosis via the public healthcare system. Presently, in Australia, the Enhanced Primary Care Program for chronic conditions such as diabetes, where supportive care, for example in the form of subsidised visits with diabetes educators, podiatrists and other allied health practitioners, is available via primary care physicians. Whilst this program may be used to support people with endometriosis, for example, to access physiotherapy for pelvic pain, the subsidised visits are limited to a maximum of 5 per calendar year, and often need to be spread across different providers (e.g. physiotherapy, psychology, dietetics). Furthermore, research findings have highlighted the inadequacy of this funding model in supporting the whole-person needs of endometriosis (Armour et al., 2022), with fewer than 16% of individuals with endometriosis accessing care plans (O’Hara et al., 2018).

In order to reduce costs and accessibility issues, allied health supports, and alternative therapeutic approaches can - at least for some people– be delivered online. Such programs are known to improve access to care, provide tailored support, and can be delivered over various operating systems and devices. While improving HRQoL, pain and mental health, they can further inform and empower people with complex health conditions (Breton et al., 2025; Rosenbloom et al., 2018). Not only are such approaches cost-effective and available 24/7 from any location, they can also provide long-term support when it is needed, rather than when the HCP is available, thereby reducing inequalities in accessing care. However, it is essential to determine whether online-delivered supportive care is effective in improving the health of people with endometriosis, with currently limited clinical trial outcomes available (Breton et al., 2025). Given the diagnostic delay (Mosterd et al., 2025) and evidence that repeated surgical interventions are common (Crump et al., 2024), alternative strategies to support those with endometriosis may be advantageous early in their journey, as well as later as required, to respond to the ongoing whole-person challenges experienced by those living with the condition (Dowding et al., 2023; Van Niekerk et al., 2024).

Strengths of this study included the qualitative design and use of semi-structured focus groups, guided by participant discussion, allowing for the exchange of experiences, and ideas between participants, amplifying the consumer voice. Additional strengths were the inclusion of participants with different ages, time since diagnosis, and geographical classifications. Notwithstanding, convenience sampling and selecting participants from an actively engaged population (given recruitment occurred via online professional consumer organisations) may have introduced selection bias, limiting the representativeness of results. Further, our study only included Australian participants, with limited diversity in ethnic identification, restricting the generalisability of findings. Future research should explore international perspectives and adopt a sampling matrix to improve diversification in the results.

Conclusion

As a whole-person complex disease, endometriosis requires whole-person complex solutions. Interdisciplinary, person-centred care is critical to ensure that individuals are actively involved in decisions influencing their health and are empowered to make choices that support their quality of life. However, given the high costs of care and limited availability of practitioners familiar with endometriosis, online supportive care programs may need to be developed and evaluated to provide a whole-person approach to treating endometriosis.

Supplemental Material

sj-docx-3-hpq-10.1177_13591053261448104 – Supplemental material for The needs, preferences, and priorities for supportive healthcare in people living with endometriosis: A qualitative exploratory study

Supplemental material, sj-docx-3-hpq-10.1177_13591053261448104 for The needs, preferences, and priorities for supportive healthcare in people living with endometriosis: A qualitative exploratory study by Suiyin Cheah, Antonina Mikocka-Walus, Leesa Van Niekerk, Katherine Stanley, Marilla Druitt and Subhadra Evans in Journal of Health Psychology

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Supplemental material, sj-docx-4-hpq-10.1177_13591053261448104 for The needs, preferences, and priorities for supportive healthcare in people living with endometriosis: A qualitative exploratory study by Suiyin Cheah, Antonina Mikocka-Walus, Leesa Van Niekerk, Katherine Stanley, Marilla Druitt and Subhadra Evans in Journal of Health Psychology

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Supplemental material, sj-jpg-1-hpq-10.1177_13591053261448104 for The needs, preferences, and priorities for supportive healthcare in people living with endometriosis: A qualitative exploratory study by Suiyin Cheah, Antonina Mikocka-Walus, Leesa Van Niekerk, Katherine Stanley, Marilla Druitt and Subhadra Evans in Journal of Health Psychology

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Supplemental material, sj-pdf-2-hpq-10.1177_13591053261448104 for The needs, preferences, and priorities for supportive healthcare in people living with endometriosis: A qualitative exploratory study by Suiyin Cheah, Antonina Mikocka-Walus, Leesa Van Niekerk, Katherine Stanley, Marilla Druitt and Subhadra Evans in Journal of Health Psychology

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sj-pdf-5-hpq-10.1177_13591053261448104 – Supplemental material for The needs, preferences, and priorities for supportive healthcare in people living with endometriosis: A qualitative exploratory study

Supplemental material, sj-pdf-5-hpq-10.1177_13591053261448104 for The needs, preferences, and priorities for supportive healthcare in people living with endometriosis: A qualitative exploratory study by Suiyin Cheah, Antonina Mikocka-Walus, Leesa Van Niekerk, Katherine Stanley, Marilla Druitt and Subhadra Evans in Journal of Health Psychology