Unheard, uninformed and vulnerable: a qualitative study of women who seek endometriosis care outside of biomedicine

Unheard, uninformed and vulnerable: a qualitative study of women who seek endometriosis care outside of biomedicine | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Unheard, uninformed and vulnerable: a qualitative study of women who seek endometriosis care outside of biomedicine Sophia Gerontakos, Amie Steel, Matthew Leach, Jon Wardle This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6341834/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 9 You are reading this latest preprint version Abstract Background Endometriosis is a complex, chronic inflammatory condition affecting women and persons assigned female at birth and often characterised by symptoms including chronic pain (pelvic and other pain), fatigue, painful urination and bowel movements, and painful sex along with other comorbidities. Women with endometriosis are frequently dissatisfied with available medical treatments and management. Such dissatisfaction means women with endometriosis are often high users of health care, and use a wide variety of health disciplines, including high use of out-of-pocket and traditional, complementary and integrative health (TCIH) therapies that may be outside of biomedicine. The purpose of this study is to identify people with endometriosis who engage with healthcare providers outside formal biomedical pathways to explore their experiences of the healthcare types they access, have accessed, and their healthcare needs. Methods Qualitative methods were used where focus groups were conducted during 2021, with Australian participants > 18 years diagnosed with endometriosis. Participants were recruited via the Australian endometriosis advocacy organisation QENDO, via social media support groups for endometriosis and via social media pages of clinicians with a clinical focus on endometriosis. The focus groups explored three topics: (i) Healthcare needs and experiences, (ii) experiences with naturopathic medicine, and (iii) healthcare within a group setting. This paper is reporting the results of the first topic (healthcare needs and experiences). Data were analysed using reflexive thematic analysis. Results Two focus groups were conducted with a total of 11 participants. Three primary themes were developed from the dataset: Feeling unheard, neglected and disempowered, receiving poorly coordinated and informed care , and experiencing financial vulnerability due to health system failure. Conclusions The findings of this study reveal that women are consulting with TCIH providers after lengthy, financially burdensome and often harmful “trial-and-error” processes within the medical system. It also reveals the costs of endometriosis health care to be unfeasible, and that healthcare providers across the board (medical, TCIH and allied health alike) require up to date education and information on endometriosis. Improvement at a health systems level is needed including the development of clear referral pathways and inclusion of TCIH healthcare types in allied health plans. Endometriosis healthcare experiences women’s health 1 Introduction Endometriosis is a complex, chronic inflammatory condition affecting women and persons assigned female at birth and characterised by endometrium-like tissue being present outside the endometrium ( 1 ). Endometriosis can affect trans men and non-binary people, yet the available research on the condition is overwhelmingly focused on cis women. Endometriosis is often characterised by symptoms including chronic pain (pelvic and other pain), fatigue, painful urination and bowel movements, and painful sex along with other comorbidities ( 1 , 2 ). The condition has far-reaching impacts including on quality of life, mental health, personal and intimate relationships and employment and financial wellbeing ( 3 ). Affecting over 14% of Australian women, endometriosis has a higher prevalence than diabetes ( 4 ) yet far less is known about the condition and diagnostic delays remain at an average of seven years ( 5 ). A review of qualitative evidence demonstrates women with endometriosis are frequently dissatisfied with available medical treatments and management – dissatisfaction often characterised by unsuitable or inappropriate treatment and/or diagnostic methods, dismissal of their concerns and poor outcomes ( 6 , 7 ). Such dissatisfaction means women with endometriosis are often high users of health care, and use a wide variety of health disciplines, including high use of out-of-pocket and traditional, complementary and integrative healthcare (TCIH) therapies that may be outside of biomedicine and may not be integrated into health systems ( 8 ). For example, approximately 20% of Australian women with endometriosis consult with a qualified naturopath, and those who consult with a naturopath report visiting numerous other healthcare providers including laparoscopic surgeons ( 9 ). Other research has also identified high allied health and complementary therapies usage among women with endometriosis ( 10 , 11 ). Given the documented dissatisfaction with medical care and treatments, and unmet healthcare needs alongside the high use of allied and TCIH therapies among women with endometriosis, it is appears that dissatisfaction of care drives those people to seek care with TCIH and allied health practitioners. The purpose of this study is to identify people with endometriosis who engage with healthcare providers outside the formal biomedical pathways to explore their experiences of the healthcare types they access, have accessed, and their healthcare needs. Given the apparent unmet healthcare needs of women with endometriosis, the paper explores these gaps further to develop a better understanding of the healthcare needs of those with endometriosis, to contribute to pathways for future research and medical system reform. 2 Methods This study was approved by the Human Research Ethics Committee (HREC) at Southern Cross University (approval number: 2020/144). 2.1 Study design, procedure and data collection The study drew on an interpretive phenomenological analysis method ( 12 ) of inquiry, using elements of participatory action research ( 13 ) within a postpositivist qualitative paradigm. This approach was chosen as it aims to provide detailed examination of personal lived experience and decision-making. Focus groups were selected as the method of data collection because they promote increased self-disclosure (as opposed to one-to-one interviews) by bringing participants with similar characteristics (e.g. women with a diagnosis of endometriosis) together in a safe and respectful space to share their views and experiences ( 14 ). Data was collected for this study during 2021, from Australian participants diagnosed with endometriosis. One focus group (comprising five participants) was conducted in person in Gold Coast, Queensland (in a private classroom at Southern Cross University Gold Coast campus) and the second group online (comprising six participants) using the Zoom meeting platform to include participants from a wider geographic region. The duration of each focus group was between 90 minutes and two hours. Using purposive and snowball sampling, participants fulfilling the following criteria were invited to participate: i) aged 18 years or older, ii) have previously or currently consult with a naturopath, iii) have a medical diagnosis of endometriosis and iv) speak fluent English. Participants were recruited via the Australian endometriosis advocacy organisation QENDO, via social media support groups for endometriosis and via social media pages of clinicians with a clinical focus on endometriosis. Participants received a nominal gift card for participating. During the focus groups, participants were asked to describe their experiences and perceptions on three topics: (i) Healthcare needs and experiences, (ii) experiences with naturopathic medicine, and (iii) healthcare within a group setting. This paper is reporting the results of the first topic (healthcare needs and experiences). The focus groups were led by the first author (SG) with a co-facilitator taking field notes (AS). AS was selected from the research team as co-facilitator to enable the focus groups to be female-led with the topic being a sensitive female-specific topic and to maintain a safe space for participants. Both researchers have experience conducting focus groups for qualitative research. The focus groups were audio-taped with participant permission and transcribed verbatim using Otter AI ( 15 ) and transcriptions were checked and cleaned by SG. Transcriptions were checked by reading and editing the text while listening to the voice recordings. 2.2 Data analysis The transcribed text was analysed using the reflexive thematic analysis method ( 16 ) using NVivo 12 Plus software ( 17 ). Reflexive thematic analysis method involved the first author (SG) conducting a systematic process of coding the data to develop themes from the dataset that encompass participant views and experiences on the topic. Codes and themes were discussed and compared against the data with two additional authors (JW and ML) and the resulting themes were checked against the data by the fourth author (AS). Upon conflicting views of themes, codes were reviewed and themes adjusted by SG and AS. Revised themes were checked and agreed upon by JW and ML, reaching consensus. 3 Results Two focus groups were conducted with a total of 11 participants. All participants identified as female. Participants were from Queensland (n = 7), Victoria (n = 2), Australian Capital Territory (ACT) (n = 1) and New South Wales (NSW) (n = 1) living in a range of metropolitan and regional areas. Saturation was believed to be reached at the conclusion of the second focus group. Thematic analysis of the data revealed several shared experiences amongst participants. Three primary themes were developed from the dataset describing these experiences, with 2–3 subthemes within each theme, as listed in Table 1 . Table 1 Themes and subthemes developed from the dataset Themes Subthemes 1. Feeling unheard, neglected and disempowered • Getting a diagnosis requires long term persistence: being unheard and disbelieved • Believed but still unheard: receiving unwanted and unsuitable treatments • Mental health is impacted from all-consuming burden of disease, disempowerment and unmet healthcare needs 2. Receiving poorly coordinated and informed care • Lack of information and guidance • Resistance from healthcare providers: lack of referral and collaborative care 3. Experiencing financial vulnerability due to health system failure • Unfair and unfeasible costs of healthcare for endometriosis • Sacrificing care over cost of living and insecurity in employment 3.1 Theme 1: Feeling overlooked, neglected and disempowered The first theme identified covered participants overall experience with healthcare providers of feeling unheard and neglected. Within the theme, one sub-theme addresses the long term persistence required to reaching a diagnosis. The second sub-theme goes on to address follow up experiences of receiving unsuitable treatments after finally reaching a diagnosis; while the third sub-theme addresses the issue that mental health is negatively impacted from the all-consuming burden of disease. Negative experiences within the medical system were unanimous amongst participants in our study, leading to an overall experience of disempowerment. Within these experiences, participants consistently reported feeling neglected within the medical system. “I just found I was very neglected.” P2 Rather than being in control of their own treatment and healing journey, some participants reported a sense of disempowerment in feeling like the doctor was in control and they were there as inactive participants, solely to follow directions. “ I feel like often with the doctors, they're in control. And they're handing out kind of directions .” P1 Getting a diagnosis requires long term persistence: being unheard and disbelieved The first sub-theme within theme one, reflects participant reports of the significant persistence required to receive a diagnosis due to being unheard and/or disbelieved by healthcare providers. Most participants described the experience of being overlooked and neglected as influencing the time it took to receive a diagnosis. Within the experience of being unheard, some participants reported having to plead with healthcare providers to investigate their symptoms. “It's almost like you have to plead your case to medical professionals” P7 Most participants had either consulted with multiple healthcare providers, or persisted with multiple consults with the same provider before having their symptoms investigated, with some participants reporting that the issue of being unheard and overlooked in the medical system had a secondary effect of long wait time to diagnosis and treatment. “it took me about 10 years to get a diagnosis… I went to several different specialists. And I literally had to convince this specialist that I ended up receiving my surgery from that I had it [endometriosis]. And sure enough, I had stage 4 endometriosis” P9 “ It took me about 18 months of telling her [GP] that something's really not right before she was like, okay, we need to send you to a gynaecologist ” P11 In addition to the difficulty and long wait times to receive a diagnosis, some participants were then spending many years working with treatment options provided through formal healthcare pathways without having their healthcare needs met. “I've had about seven [surgeries] and nothing [no symptom change]” P7 Believed but still unheard: receiving unwanted and unsuitable treatments The second sub-theme within theme one reflects participant experiences after achieving a diagnosis, describing how the experience of being unheard did not end once a diagnosis had been received. Upon eventually receiving a diagnosis, participants reported further experiences of disempowerment regarding the treatments they were prescribed. Most participants described situations of mismanagement where treatments were prescribed that were either not wanted or not suitable. For example, treatments that came with negative side effects, insignificant symptom change or risk of dependence. “I'm still in pain most days [with Mirena IUD], I'm still bleeding, like every single day a little bit.” P5 “ I'm extremely sensitive to all pharmaceuticals and I’ve had a few surgeries lately, and I just get really bad reactions from them ” P2 “ I was always given endone and Tramadol and things like that. And then the worst my pain got my doctor prescribed Valium to me...And I never got it because when I looked into it, it’s just going to be another prescription we're going to be addicted to… So that was something that was always kind of pushed down my throat by my GP, which I never wanted to take ” P10 In addition to the prescription of unsuitable treatments with negative side effects, some participants felt they were being prescribed medications long term that were unsuitable for long term use and not addressing the underlying problem. “ 13 or 14 years on, it's not a sustainable option to be prescribing a medication that has long-term side effects… endone will only do so much as the bandaid fix… everything is a bandaid ” P7 Most participants reported the experience of being overlooked and unheard continued when they were unsatisfied with the treatments they were using. When unsuitable treatments were prescribed, those participants felt disregarded when they expressed these concerns to their healthcare provider. “And I went to the doctor and said I don't know if I want this [Mirena IUD] anymore. I didn't want to go on the pill because I didn't feel like I liked what it did to my body. And I sort of wanted it out and she just said to put up with it.” P5 In addition, some participants reported having invasive treatments that proffered no benefit such as multiple surgeries with no change in symptoms, or in some cases a worsening of symptoms. “ I had seven laps [laparoscopies]. And my only option really was now to just get everything cut out because of the scar tissue ” P4 Despite surgery being the most common medical treatment for endometriosis, most participants reported surgery to be an ineffective or an unsuitable treatment for their endometriosis. In some cases, surgery had worsened symptoms for participants, leading them to feel like they have no treatment options left. “I've had surgery four times, and every time I've had it come back, if not more aggressive, so I'm kind of stuck in this place where I'm not sure what my options are anymore” P10 Some participants expressed a sense of frustration with the lack of options offered to them through the healthcare system. Most of those participants reported that the oral contraceptive pill was the only non-invasive treatment on offer from their medical providers. “I think it's just the lack of options that we're all getting, I mean for myself, going to the doctors and [doctor] being like, oh no, just go on the pill” P2 Across the journey of care leading to surgical or unsuitable treatments, participants described situations where they felt they were treated more like a disease rather than a person when being overlooked by medical providers. In one case, a surgical procedure led to adverse outcomes for the woman including removal of a healthy organ and initiating menstrual symptoms that had not been present previously. “I went to hospital and my CRP was really high so they took me straight into surgery thinking maybe it was atypical presentation of appendicitis, they took my appendix out even though it wasn’t my appendix and that's when they diagnosed me with endo in the surgery. So prior to that I had no problems with my cycle no pain or anything. But since then, because probably all the inflammation that I had after the surgery and poking prodding I've had some shockers of periods” P3 Mental health is impacted from all-consuming burden of disease, disempowerment and unmet healthcare needs The third sub-theme within theme one reflects the all-consuming burden of endometriosis and its impacts on mental health. Most participants in our study reported poor mental health as an indirect effect of the all-consuming burden of endometriosis – relating to both the symptoms of the condition itself, and the impacts of navigating the healthcare system, not having healthcare needs met and feeling disempowered within the system. All participants agreed that having endometriosis takes a toll on mental health. “ It's really hard on people's mental health ” P6 “That mental side was definitely huge for me .” P2 Some participants experienced stress and anxiety directly linked to experiences within the healthcare system and the task of consulting with their medical provider. This anxiety was linked to the need to tell and re-tell their story numerous times to health professionals. “ …medical induced kind of anxiety comes with reiterating your story for the 100th time… it hurts to breathe, all I do is cry. ” P7 While other participants attributed deteriorating mental health to poor quality of life and ongoing pain, exacerbated by healthcare experiences and a lack of accessible mental health support. “ I didn't have quality of life. And I was just watching myself and my mental health and everything disappear down the drain ” P4 “There was definitely no mental support at all for it…” P2 For one participant, a lack of accessible mental health support confounded by the burden, frequency and extent of pain with no sustainable relief, led to suicidal ideation. “ I've contemplated and attempted suicide before because what can take the pain away, me not breathing anymore ” P7 3.2 Theme 2. Receiving poorly coordinated and informed care The second theme covers experiences of receiving poorly coordinated and informed care at a health system level. Within the theme, the first sub-theme addresses the lack of information and guidance provided, and the second sub-theme addresses the lack of and provider resistance to collaborative care. Participants reported using a wide range of healthcare types, spanning both TCIH and biomedicine. Biomedical and non-TCIH care types used included surgery, progesterone, hormone replacement and oral contraceptives, CBD oil, pelvic physiotherapy and psychology. TCIH types used included acupuncture, herbal medicine, lymphatic drainage, naturopathy, nutritional medicine, osteopathy and various self-management strategies including transcutaneous electrical nerve stimulation (TENS) machines, and lifestyle medicine approaches such as yoga, swimming and dietary changes. Despite the need and expectation for multi-disciplinary care, participants reported the delivery was often absent from the health care that is accessible to them at a system level. Some participants reported consulting with multiple providers to find a suitable referral or care plan to meet their healthcare needs, positing poor coordination of care. “my gynaecologist this week, I asked her… is there a naturopath that you would recommend or therapy that you would recommend that I should be doing as well? Because she recommended physio therapy, the physiotherapist recommended massage, they recommended tens machines. With a lack of integration or coordination of care and information at the system level, some participants felt left on their own to educate themselves and find complementary medicine and other care types outside of what was offered through the formal medical pathways. “I really had to do my own digging... I feel like you find most of your information on social media” P9 Lack of information and guidance Although participants reported needing, expecting and self-educating about multi-disciplinary care, many reported a lack of information provided within the healthcare system regarding treatments, management and appropriate referral for endometriosis. Due to this lack of coordinated and informed care some participants reported finding some of the most helpful treatments entirely by accident, and expressed a sense of frustration at the lack of information shared by healthcare professionals. “ I kind of had this moment where I thought to myself, why has it taken this long? There was even a little bit of resentment there with the healthcare system and all these specialists and my regular relationship with my GP, why has no one mentioned this [diclofenac suppository] before?” P7 In addition to a lack of information, some participants reported a lack of provider knowledge on endometriosis and related pain management strategies, adding to the difficulties in receiving diagnosis and effective treatments. “ then you also have the fact that we don't always have GPs and gyno’s who know or understand what this condition is. And same with other specialists ” P6 While describing the experience of needing to self-educate about endometriosis management, some participants reported receiving more information from TCIH providers than in the medical system. Though even accessing this resource of information was the result of self-directed activity rather than any referral: “I had to source my own way of finding everything, especially going to my naturopath.” P2 The lack of information participants described extended beyond endometriosis management. Some participants also reported a lack of information about rehabilitation and recovery following surgery. Those participants felt unsupported after surgery with care ending the moment the patient left the operating theatre. Most participants described receiving no post-operative guidance on recovery and condition management moving forward. “the kind of doctor/surgeon, hospital side of it is really lacking in how to support women post-surgery, with their pain management and getting their lifestyle and wellbeing and everything back on track so they can actually live again” P1 For one participant, the lack of post-operative guidance and rehabilitative care led to the presentation of new pain symptoms arising. “even just that six weeks post-surgery, just rehabbing, supporting your body properly, endo-aside, isn't even communicated... I've had chronic low back pain now for six months [post-surgery]” P3 Resistance from healthcare providers: lack of referral and collaborative care In addition – and contributing to – the lack of information provided to participants about endometriosis treatments and management, was a lack of referral and collaborative care amongst healthcare providers where all providers seemed unwilling to move beyond their professional ideologies by supporting patients using multiple healthcare types. Some participants described feeling judged and unsupported in their healthcare and treatment decisions by both TCIH and biomedical providers. Those participants reported that some TCIH providers were not supportive of their choices around medical treatments (e.g. hormonal therapies), putting them in a position of feeling like they had to choose between healthcare types, rather than be supported by both. Similarly, some medical providers were dismissive or uninformed about TCIH therapies, suggesting that biomedical treatments were the only treatments of benefit despite participants having already experienced the benefits of TCIH therapies. “I found that I got a lot of attitude from a lot of people a lot of naturopaths that were like ‘you just need to get it [Mirena IUD] out’. I'm like, ‘well, it stops me from haemorrhaging for days on end’” P4 “I said to the surgeon, “so I’ve read some studies about acupuncture”. And she's like, Oh, no, none of that works. And luckily, I've had experience with acupuncture and naturopathy before and so I knew, okay, I should go” P1 “She [gynaecologist] pretty much said the only reason I should go see a naturopath again, is if I want to lose weight... And I was like, I need a new gynaecologist.” P8 The majority of participants had already experienced the benefits of therapies outside of biomedicine and wanted a collaborative approach to treatment amongst TCIH, allied health and medical providers. Those participants also believed that it is the responsibility of health care providers themselves to establish interprofessional lines of communication, rather than the patient endeavouring to establish those lines of communication. “ It's up to the allied health professionals to bridge that gap. It's not up to the client themselves, because that's too much pressure for us to try and make everyone play nice .” P4 When discussing what the participants want from healthcare, most described wanting collaborative (multi-disciplinary) care which participants associated with feeling supported in their healthcare decisions. “It’s supposed to be complementary. You're supposed to be like, this is my situation. Can you support me on this not change it?” P3 Participants felt most supported by healthcare providers when those providers respected their healthcare choices and were able to work with those choices collaboratively. “The naturopath I work with he's really great… like I came to him said I'm doing acupuncture, I'm on the pill. He's like, ‘yep, okay, great. I'll just work in around all of that’… I think that's really important” P1 Participants also reported wanting increased frequency of counselling and psychological support within the healthcare and referral system. “ I’d just really like to be seeing a psychologist every two weeks .” P3 “ I think more frequent sessions with a counsellor.” P6 Within a collaborative, multi-disciplinary approach that included psychological support, participants reported consistent pain management and a holistic approach to endometriosis management as key healthcare priorities. “ my primary goal at the moment is consistent pain management, and a holistic approach with kind of ongoing healing ” P7 Additionally, in order to access the holistic approach participants wanted, the majority of participants believed more natural alternatives to pharmaceutical treatment options including naturopathy and acupuncture being accessible through the health system as an allied health service are needed. “ We've got like the allied health care plans that we can get from the doctors and naturopathy and acupuncture isn't covered by that. It'd be good if they could recognise that as an allied health service ” P2 Finally, by receiving a more collaborative and supportive approach, the participant’s believed this would provide autonomy and an increased sense of control that they experienced as lacking from endometriosis-related healthcare. As one participant expressed below, they believed having autonomy in the healthcare system would alleviate the common experience of feeling a lack of control on their treatment and health trajectory. “Giving you your autonomy. Yeah, a little bit of sense of control because it feels out of control so much of the time” P4 3.3 Theme 3. Experiencing financial vulnerability due to health system failure The third theme covers the significant financial burden of endometriosis, putting participants in insecure and vulnerable positions. Within the theme one sub-theme addresses the unfair and unfeasible costs, while the second sub-theme addresses the issue of making sacrifices to cover care alongside insecurity of employment. Interlinked with the multi-layered burdens of endometriosis described in the previous themes, participants are taking on an additional burden – financially, due to failures of the healthcare system itself. “ You've got this condition that now you have to adjust your life to, not only mentally, physically but now financially I think is the biggest factor ” P7 Unfair and unfeasible costs of healthcare for endometriosis Participants reported unanimously that the costs of healthcare to maintain quality of life with endometriosis are not feasible. “It's not feasible. Not if you want to do it well, and not if you want long term consistent relief” P8 Financial burden was attributed to those factors described in previous themes, relating to systemic failures where unfeasible costs are unfairly transferred to the patient. The participants largely associated these unfeasible costs with poorly coordinated and informed care as described previously. Within this discussion of costs and coordination of care, most participants reported lack of access to the required care types through the public health system and the “trial and error” of locating providers with knowledge and experience in endometriosis was an additional issue. “ There'd be some months that were $500 to $1,000 in trialling different people, different things. So you can be spending a lot of money trying to find someone” P6 Many participants reported out-of-pocket costs upwards of $ 200 per week. “ I'm probably spending about $200 a week on treatments and supplements and herbals a week. And then if I need to go into the doctor or anything separately, that's just kind of one off expenses ” P1 “ I put away $200 every week into an account that is for appointments, supplements, and skincare” P3 Out-of-pocket cost of appointments and products utilised was reported as a common contributing factor to unfeasible costs by most participants. Contributing to this were the different care types needed that are not fully covered by Medicare or attracting no Medicare rebate, and/or being excluded by private health providers, therefore attracting high out-of-pocket costs. Some participants reported being refused cover through private insurance, and not having access to their chosen therapies through allied health care plans. “ I tried to go through the private health system, and they pretty much overlooked me because it was a pre-existing disease ” P10 “ We've got the allied health care plans that we can get from the doctors, and naturopathy and acupuncture isn't covered by that” P2 The high out-of-pocket costs impacted the frequency of access women could utilise the care type (as described in theme two). Most participants reported needing more frequent consultations then they were able to access. “ I think sometimes it's the frequency of things that really comes into it like a one-off cost is not too bad. But it’s how often you should be going versus how often you can afford it” P6 Sacrificing care over cost of living and insecurity in employment Extensive out-of-pocket costs of endometriosis-related healthcare led some participants to reportedly have to choose between healthcare and quality of life, and living essentials such as food and rent. “… have to sacrifice or consider, what's more important, my rent, and having a house over my head, or making sure that I'm comfortable enough to be able to manage day in day out ” P7 Most participants reported frequently having to make sacrifices and choose between having finances available for essentials and/or leisure and other items, or being able to function well on a day-to-day basis. “ I make a choice to spend that money on being able to get up in the morning rather than saving for a holiday or putting that money towards something else. ” P1 While quality of life was impacted by precarious financial situations for some participants, most participants reported the impacts of endometriosis on employment were a contributing factor to the financial burden and their ability to seek the healthcare they needed. “ If you don’t have flexibility through your workplace, then you're stuck in a position where if you lose your job or you're only contracting or you're self-employed, there are so many variables that obviously will then impact your financial wellbeing which then in turn impacts your ability to seek the medical assistance and care ” P7 Some participants reported needing to take extended leave (beyond ordinary leave entitlements) and/or losing one’s job or needing to step down due to impacts of the condition. “ The cost of stepping down at work for me, I had to do that. I had a high stress leadership position and had to step back because I couldn't do it when I was having high flares ” P6 4 Discussion This study aimed to identify the healthcare experiences and needs of women with endometriosis who engage with healthcare providers outside of the biomedical system. In doing so, the study identifies significant gaps between the healthcare women with endometriosis need, and the healthcare they receive. It’s important to note that by sampling women who have accessed healthcare outside of biomedicine, the sample may be more likely to have unmet healthcare needs. However, the findings are not disparate from the findings of other studies with women with endometriosis from different samples, as highlighted in the forthcoming discussion. Research shows receiving a diagnosis of endometriosis is often delayed with the average time to diagnosis being seven years ( 5 ), meaning people diagnosed with endometriosis have often been experiencing symptoms for a number of years prior to the point of diagnosis. This study reinforces the experiences of women with endometriosis and chronic pelvic pain in other research, in that they are experiencing significantly long time periods to diagnosis, even while suffering symptoms ( 11 , 18 ), and adds context to the diagnostic delays by revealing ways the health system is failing to meet health care needs of this population, in part by delaying proper investigation of symptoms. Participants in this study attributed lengthy times to diagnosis to being dismissed and not believed by health care providers, and to being disempowered within the healthcare system. Women in this study also had the experience of being neglected and overlooked – reiterating the experiences of women with endometriosis in other research, who reported healthcare to be inadequate primarily due to medical providers having limited endometriosis knowledge, menstrual stigma, or not being listened too ( 18 ). Furthermore, a common concern of women in our study was about communication about and side effects of treatments when they were finally provided, and lack of information following surgery and surgical recovery – concerns that have been reported by women with endometriosis from other samples in previous research ( 19 ). Further to the experience of disempowerment in their treatment journey, the study demonstrates participants have often been effectually failed by the healthcare system. Despite participants in this study knowing and communicating what healthcare types they needed and wanted in order to manage the condition (often self-directed through self-education and/or an expensive ‘trial-and-error’ process), their healthcare needs have not been met inside the healthcare system, requiring going outside traditional systems to access treatments. This study identifies an issue of health system failure primarily through inaccessibility of services, lack of knowledge and understanding of endometriosis, and poorly coordinated and informed care where practitioners are either not knowledgeable about medical or TCIH treatments, are dismissive of one or the other, or are not open to the interprofessional communication, treatment and referral required and requested by patients. Similarly, other research has found women with endometriosis reporting that negative experiences with healthcare professionals has led to their diagnostic delays ( 20 ) and that women with endometriosis are seeking and engaging with multiple different health providers as a result ( 11 ), highlighting the need for co-ordinated multidisciplinary care at a systems level. To address inaccessibility of services and the need for more co-ordinated care, recommendations have been made for a more expansive chronic disease management plan (CDMP) as a potentially effective means to deliver interdisciplinary care to women with endometriosis ( 11 ), a recommendation which may alleviate some of the systemic issues and align with the health care needs identified in this study. Alarmingly, and further to the systemic failure to meet healthcare needs of women with endometriosis, the women in this study were also reportedly experiencing harm and neglect within the system (often disguised as ‘treatment’). This was evidenced in the common experiences amongst participants of being prescribed treatments they did not want, with significant adverse side effects (and/or drug dependency), and numerous invasive treatments (surgical procedures) with no stated or obvious benefits – including one case where a healthy organ was removed by mistake before diagnosing endometriosis. In a condition that is more prevalent than diabetes ( 4 , 21 ), this poses important questions as to why women have continued to experience medical and health care harm and neglect, despite coordinated attempts to improve care ( 22 ) and despite the release of multiple clinical guidelines for endometriosis ( 23 , 24 ). Given that endometriosis is predominantly a female condition characterised by chronic pain, the women with endometriosis in this study may have experienced a form of medical misogyny and gendered violence within healthcare that has been revealed in other research ( 25 – 27 ). One body of research undertakes a thorough exploration of deeply entrenched medical discrimination, and how females (and even more so females of colour) bear the burden of medical discrimination through an investigative journalistic lens and specific to women with endometriosis ( 27 ). The study also highlights the ways in which people with chronic illnesses such as endometriosis begin to trust one another more than medical practitioners due to repeated exposure to a system that fails them – adding context to participant reports in our study of depending on self-education and self-referral for effective supports. In addition to the reports of neglect, harm and disempowerment experienced by participants, this study identified a resistance from healthcare providers (both TCIH and biomedical health professionals) culminating in a lack of referral and a lack of collaborative care. Given that Australian and international guidelines ( 23 , 24 ) indicate the need for interdisciplinary care for endometriosis, these did not seem to have translated to practice at the time of the study. It should be noted the study was conducted the same year as the release of the Australian clinical practice guideline so there may not have been time for translation to practice – although three years following the release of the Australian national action plan. As such, follow up research should be conducted with patients (to assess the level to which their health care needs are being met after such initiatives), and with health care providers (to assess the development of their knowledge and understanding of the condition and current treatments). Alongside system and allied health access failures where treatment options offered to our participants through formal health system pathways did not match their treatment preferences, the resistance of healthcare providers to offer informed and collaborative care was identified in this study as contributing to the great financial burden participants reported experiencing. For example, our participants reported wanting access to TCIH treatments they know they benefit from while currently the out-of-pocket costs are unfeasible and the communication and collaboration between TCIH and biomedical practitioners is lacking. The combination of these factors appears to subsequently link to the poor and declining mental health reported by participants, an aspect of their healthcare needs that again participants in the study reported as unmet. Previous research shows relationships between endometriosis symptoms and mental health issues, recognising the need for personalised (interdisciplinary) endometriosis healthcare to include psychological care ( 28 ). Current evidence also shows an increased risk for mental health conditions in people with endometriosis ( 29 ), and the need to investigate suitable mental health interventions for this population. This study reinforces previous research identifying the need for financially viable psychological care options for women with endometriosis, as well as the need to identify effective TCIH therapies for endometriosis and avenues for their inclusion in formal health system pathways. In summary, many aspects of this study align with experiences of women with endometriosis in other countries and in other research including the great physical burden and impacts on quality of life, significant psychological and psychosocial burden, diagnostic delays, lack of healthcare provider knowledge and poor doctor-patient relationships, receiving insufficient and contradictory information, impacts on employment, financial burden and the increased rate of seeking help through naturopathic and TCIH treatments after insufficient help through biomedicine ( 19 ). As in all research, this study has limitations. These include the small sample size characteristic of qualitative research (which also becomes a strength in that qualitative research allows for the exploration of complex narratives shared by the women of their lived experiences). The limitations also include the participant sample being women with endometriosis who had consulted a naturopath for endometriosis. As such, this sample may impact some of the findings such as where women who have consulted a health practitioner outside of biomedicine may be more likely to have previously experienced dissatisfaction of care within biomedicine. However, as the findings in this research do not significantly deviate from the trends in previous research the overall themes in participants experiences may be unique to this sample but are not substantially set apart from experiences reported by other samples. In addition, the study has not captured the experience of gender-diverse individuals living with endometriosis, who are likely to have different, and additional challenges within the healthcare system. Although gender-diverse folk were not excluded from this study, all participants who responded to recruitment notices identified as women assigned female at birth. Targeted future research is needed to identify the healthcare experiences and needs of gender-diverse individuals with endometriosis. 5 Recommendations and Conclusion The findings of this study reveal that women are consulting with TCIH providers after lengthy, financially burdensome and often harmful “trial-and-error” processes within the medical system usually spanning many years. It also reveals the costs of endometriosis health care to be unfeasible (and unfair), and that healthcare providers across the board (medical, TCIH and allied health alike) require up to date education and information on endometriosis - including pathogenesis, contributing factors, treatment and management options and the side effects and adverse effects that may come with those treatments. Interprofessional communication and collaboration is needed between medicine, allied health and TCIH practitioners. Improvement at a health systems level is needed including the development of clear referral pathways and inclusion in allied health plans of such health care types. A more comprehensive review of the healthcare needs of people with endometriosis is recommended, to determine those treatments most helpful in management to be included in allied health care and chronic disease management plans through public (and private) funding arrangements. More research is needed about the benefits of TCIH therapies for endometriosis so that healthcare providers can provide clear and relevant information to patients on treatments they may benefit from. This may also provide pathways for more treatments to be offered through allied health care and/or CDMP’s to alleviate the financial burden of endometriosis related healthcare and have potential positive subsequent effects on mental health by alleviating financial stress and the potential improvement of accessibility of psychological care. Many of the concerns and experiences shared by participants in this study have been addressed in the Australian Clinical Practice Guideline for the Diagnosis and Management of Endometriosis that was published the same year this study was undertaken. Follow up research is now needed to determine if those clinical guidelines have improved healthcare experiences for people with endometriosis and the next steps in meeting their health care needs and continue improving quality of life for people with endometriosis. Abbreviations CDMP – chronic disease management plan TCIH – traditional, complementary and integrative healthcare Declarations Human Ethics and consent to participate This study was approved by the Human Research Ethics Committee (HREC) at Southern Cross University (approval number: 2020/144). Written informed consent was provided by all participants. Consent for publication Not applicable Availability of data and materials The datasets analysed during the current study are available from the corresponding author on reasonable request. Competing interests JW is the director of the National Centre for Naturopathic Medicine at Southern Cross University. AS is a director of the Australian Research Centre in Complementary and Integrative Medicine. ML is both Adjunct Associate Professor at Southern Cross University, and Implementation Scientist at JBI, University of Adelaide. SG is a PhD candidate at the National Centre for Naturopathic Medicine at Southern Cross University. Funding SG was financially supported by an Australian Government Research Training Program Scholarship at the time of research which provided tuition and a living stipend for completion of a higher degree by research, and received funding from Southern Cross University to cover research costs. The funder had no role in the conceptualization, design, data collection, analysis, decision to publish, or preparation of the manuscript. Authors contributions All authors contributed to conception of the research question. SG performed data collection alongside AS and JW. SG performed data analysis. SG, AS, JW and ML contributed to triangulation of data. The first draft of the manuscript was written by SG. All authors critically revised and edited the manuscript. All authors read and approved the final manuscript. Acknowledgements The authors would like to acknowledge the participants who shared their experiences for the purpose of research and betterment of endometriosis healthcare. References Horne AW, Missmer SA. Pathophysiology, diagnosis, and management of endometriosis. BMJ. 2022;379:e070750. Sinclair J, Abbott J, Mikocka-Walus A, Ng CHM, Sarris J, Evans S, et al. "A glimmer of hope" - Perceptions, barriers, and drivers for medicinal cannabis use amongst Australian and New Zealand people with endometriosis. Reprod Fertil. 2023;4(4). Armour M, Sinclair J, Ng CHM, Hyman MS, Lawson K, Smith CA, et al. Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: an Australian survey. Scientific Reports. 2020;10(1):16253. Australian Bureau of Statistics. Diabetes Canberra: Australian government; 2023 [Available from: https://www.abs.gov.au/statistics/health/health-conditions-and-risks/diabetes/latest-release. Frayne J, Milroy T, Simonis M, Lam A. Challenges in diagnosing and managing endometriosis in general practice: A Western Australian qualitative study. Australian Journal for General Practitioners. 2023;52:547-55. Evans S, Villegas V, Dowding C, Druitt M, O'Hara R, Mikocka-Walus A. Treatment use and satisfaction in Australian women with endometriosis: a mixed-methods study. Internal Medicine Journal. 2022;52(12):2096-106. Young K, Fisher J, Kirkman M. Women's experiences of endometriosis: a systematic review and synthesis of qualitative research. J Fam Plann Reprod Health Care. 2014;41(3):225-34. Armour M, Lawson K, Wood A, Smith CA, Abbott J. The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: A national online survey. PLoS One. 2019;14(10):e0223316. Redmond R, Steel A, Wardle J, Adams J. Naturopathy utilisation by Australian women with diagnosed endometriosis: A cross-sectional survey. Complement Ther Clin Pract. 2022;46:101539. Malik A, Sinclair J, Ng CHM, Smith CA, Abbott J, Armour M. Allied health and complementary therapy usage in Australian women with chronic pelvic pain: a cross-sectional study. BMC Womens Health. 2022;22(1):37. O'Hara R, Rowe H, Fisher J. Managing endometriosis: a cross-sectional survey of women in Australia. J Psychosom Obstet Gynaecol. 2022;43(3):265-72. Alase A. The Interpretative Phenomenological Analysis (IPA): A Guide to a Good Qualitative Research Approach. International Journal of Education and Literacy Studies. 2017;5(2). Goodyear-Smith F, Jackson C, Greenhalgh T. Co-design and implementation research: Challenges and solutions for ethics committees. BMC Medical Ethics. 2015;16(1):78. Krueger RA, Casey MA. Focus groups : a practical guide for applied research. 4th edition. ed. Thousand Oaks, California: Sage; 2009. Otter.ai. Using Otter 2025 [Available from: https://help.otter.ai/hc/en-us/categories/360003569513-Using-Otter. Braun V, Clarke V. Thematic analysis : a practical guide. London: SAGE Publications Ltd; 2022. Lumivero. NVivo (version 14). 2023. Katz C, Evans S, Mikocka-Walus A. 'Listen to women as if they were your most cherished person': Australian women's perspectives on living with the pain of endometriosis: A mixed-methods study. J Health Psychol. 2024:13591053241250101. Marki G, Vasarhelyi D, Rigo A, Kalo Z, Acs N, Bokor A. Challenges of and possible solutions for living with endometriosis: a qualitative study. BMC Womens Health. 2022;22(1):20. Hawkey A, Chalmers KJ, Micheal S, Diezel H, Armour M. “A day-to-day struggle”: A comparative qualitative study on experiences of women with endometriosis and chronic pelvic pain. Feminism & Psychology. 2022;32(4):482-500. Australian Institute of Health and Welfare. Endometriosis 2023 [Available from: https://www.aihw.gov.au/reports/chronic-disease/endometriosis-in-australia/contents/how-common-is-endometriosis. Australian Government Department of Health. National action plan for endometriosis Australia: Department of Health; 2018 [Available from: https://www1.health.gov.au/internet/main/publishing.nsf/Content/endometriosis. Royal Australian and New Zealand College of Obstreticians and Gynaecologists. Australian clinical practice guideline for the diagnosis and management of endometriosis. Melbourne, Australia; 2021. European Society of Human Reproduction and Embryology. Endometriosis guideline of European society of human reproduction and embryology. 2022. von Benzon N, Hickman-Dunne J, Whittle R. 'My doctor just called me a good girl and I died a bit inside': From everyday misogyny to obstetric violence in UK fertility and maternity services. Soc Sci Med. 2024;344:116614. Mesquita Filho M, Marques TF, Rocha ABC, Oliveira SR, Brito MB, Pereira CCQ. Sexism against women among primary healthcare workers. Cien Saude Colet. 2018;23(11):3491-504. Lindeman-Jarvis T. Let Them Bleed: How Medical Discrimination Keeps Women with Endometriosis and Other Gynecology-Related Diseases and Disorders from Accessing Care: Carleton University; 2022 2024-08-16. Škegro B, Bjedov S, Mikuš M, Mustač F, Lešin J, Matijević V, et al. Endometriosis, pain and mental health. Psychiatria Danubina. 2021;33(suppl 4):632-6. Thiel PS, Bougie O, Pudwell J, Shellenberger J, Velez MP, Murji A. Endometriosis and mental health: a population-based cohort study. Am J Obstet Gynecol. 2024;230(6):649 e1- e19. Additional Declarations Competing interest reported. JW is the director of the National Centre for Naturopathic Medicine at Southern Cross University. AS is a director of the Australian Research Centre in Complementary and Integrative Medicine. ML is both Adjunct Associate Professor at Southern Cross University, and Implementation Scientist at JBI, University of Adelaide. SG is a PhD candidate at the National Centre for Naturopathic Medicine at Southern Cross University. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6341834","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":448458546,"identity":"f69545ff-1877-4f24-9f30-29cb3452a8d4","order_by":0,"name":"Sophia Gerontakos","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA80lEQVRIiWNgGAWjYFADHiD+AMRs7ERqkABpYZwB0sJMihZmkE0MhLTIN7BffFxRcaeOv+fw4c82v7bJ8zEzMH74mINbi8EBnmLDM2eeSUicbUuTzu27bdjGzMAsOXMbHi0MPGmSjW2HJRjO85gx5/bcZgRqYWPmxaNFvoEn/SdIi/x5HuPPlj237QlqYTjAfowRpMXgbI+BNMOP24kEtRgc5mGWbDhzWHLjmWNpkr0Nt5PbmBmb8fpFvr394ceGisP8cmeSD3/48ee27fz25oMfPuJzGDOPAYLD2AYmG/CoBwH2B0icPwQUj4JRMApGwYgEANZhTvOz6vHQAAAAAElFTkSuQmCC","orcid":"","institution":"Southern Cross University","correspondingAuthor":true,"prefix":"","firstName":"Sophia","middleName":"","lastName":"Gerontakos","suffix":""},{"id":448458547,"identity":"7c0c6b18-2761-4f18-8536-8162d55cac89","order_by":1,"name":"Amie Steel","email":"","orcid":"","institution":"University of Technology Sydney","correspondingAuthor":false,"prefix":"","firstName":"Amie","middleName":"","lastName":"Steel","suffix":""},{"id":448458548,"identity":"1962af7a-a0bb-4d6c-b094-02f57225ae41","order_by":2,"name":"Matthew Leach","email":"","orcid":"","institution":"University of Adelaide","correspondingAuthor":false,"prefix":"","firstName":"Matthew","middleName":"","lastName":"Leach","suffix":""},{"id":448458549,"identity":"aca0b766-f120-455a-9fc9-ba62aa56f4c1","order_by":3,"name":"Jon Wardle","email":"","orcid":"","institution":"Southern Cross University","correspondingAuthor":false,"prefix":"","firstName":"Jon","middleName":"","lastName":"Wardle","suffix":""}],"badges":[],"createdAt":"2025-03-31 05:39:00","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6341834/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6341834/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":81575385,"identity":"ff6e2bff-2113-4e83-9e1b-5ba94bcbcca1","added_by":"auto","created_at":"2025-04-28 17:27:38","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":843046,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6341834/v1/18cc33d9-5d72-4baf-ae88-6a6069b28884.pdf"}],"financialInterests":"Competing interest reported. JW is the director of the National Centre for Naturopathic Medicine at Southern Cross University. AS is a director of the Australian Research Centre in Complementary and Integrative Medicine. ML is both Adjunct Associate Professor at Southern Cross University, and Implementation Scientist at JBI, University of Adelaide. SG is a PhD candidate at the National Centre for Naturopathic Medicine at Southern Cross University.","formattedTitle":"Unheard, uninformed and vulnerable: a qualitative study of women who seek endometriosis care outside of biomedicine","fulltext":[{"header":"1 Introduction","content":"\u003cp\u003eEndometriosis is a complex, chronic inflammatory condition affecting women and persons assigned female at birth and characterised by endometrium-like tissue being present outside the endometrium (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Endometriosis can affect trans men and non-binary people, yet the available research on the condition is overwhelmingly focused on cis women. Endometriosis is often characterised by symptoms including chronic pain (pelvic and other pain), fatigue, painful urination and bowel movements, and painful sex along with other comorbidities (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). The condition has far-reaching impacts including on quality of life, mental health, personal and intimate relationships and employment and financial wellbeing (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). Affecting over 14% of Australian women, endometriosis has a higher prevalence than diabetes (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) yet far less is known about the condition and diagnostic delays remain at an average of seven years (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eA review of qualitative evidence demonstrates women with endometriosis are frequently dissatisfied with available medical treatments and management \u0026ndash; dissatisfaction often characterised by unsuitable or inappropriate treatment and/or diagnostic methods, dismissal of their concerns and poor outcomes (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Such dissatisfaction means women with endometriosis are often high users of health care, and use a wide variety of health disciplines, including high use of out-of-pocket and traditional, complementary and integrative healthcare (TCIH) therapies that may be outside of biomedicine and may not be integrated into health systems (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). For example, approximately 20% of Australian women with endometriosis consult with a qualified naturopath, and those who consult with a naturopath report visiting numerous other healthcare providers including laparoscopic surgeons (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). Other research has also identified high allied health and complementary therapies usage among women with endometriosis (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). Given the documented dissatisfaction with medical care and treatments, and unmet healthcare needs alongside the high use of allied and TCIH therapies among women with endometriosis, it is appears that dissatisfaction of care drives those people to seek care with TCIH and allied health practitioners. The purpose of this study is to identify people with endometriosis who engage with healthcare providers outside the formal biomedical pathways to explore their experiences of the healthcare types they access, have accessed, and their healthcare needs. Given the apparent unmet healthcare needs of women with endometriosis, the paper explores these gaps further to develop a better understanding of the healthcare needs of those with endometriosis, to contribute to pathways for future research and medical system reform.\u003c/p\u003e"},{"header":"2 Methods","content":"\u003cp\u003e This study was approved by the Human Research Ethics Committee (HREC) at Southern Cross University (approval number: 2020/144).\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003e\u003cb\u003e2.1 Study design, procedure and data collection\u003c/b\u003e\u003c/h2\u003e \u003cp\u003eThe study drew on an interpretive phenomenological analysis method (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) of inquiry, using elements of participatory action research (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e) within a postpositivist qualitative paradigm. This approach was chosen as it aims to provide detailed examination of personal lived experience and decision-making. Focus groups were selected as the method of data collection because they promote increased self-disclosure (as opposed to one-to-one interviews) by bringing participants with similar characteristics (e.g. women with a diagnosis of endometriosis) together in a safe and respectful space to share their views and experiences (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eData was collected for this study during 2021, from Australian participants diagnosed with endometriosis. One focus group (comprising five participants) was conducted in person in Gold Coast, Queensland (in a private classroom at Southern Cross University Gold Coast campus) and the second group online (comprising six participants) using the Zoom meeting platform to include participants from a wider geographic region. The duration of each focus group was between 90 minutes and two hours. Using purposive and snowball sampling, participants fulfilling the following criteria were invited to participate: i) aged 18 years or older, ii) have previously or currently consult with a naturopath, iii) have a medical diagnosis of endometriosis and iv) speak fluent English. Participants were recruited via the Australian endometriosis advocacy organisation QENDO, via social media support groups for endometriosis and via social media pages of clinicians with a clinical focus on endometriosis. Participants received a nominal gift card for participating.\u003c/p\u003e \u003cp\u003eDuring the focus groups, participants were asked to describe their experiences and perceptions on three topics: (i) Healthcare needs and experiences, (ii) experiences with naturopathic medicine, and (iii) healthcare within a group setting. This paper is reporting the results of the first topic (healthcare needs and experiences). The focus groups were led by the first author (SG) with a co-facilitator taking field notes (AS). AS was selected from the research team as co-facilitator to enable the focus groups to be female-led with the topic being a sensitive female-specific topic and to maintain a safe space for participants. Both researchers have experience conducting focus groups for qualitative research. The focus groups were audio-taped with participant permission and transcribed verbatim using Otter AI (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e) and transcriptions were checked and cleaned by SG. Transcriptions were checked by reading and editing the text while listening to the voice recordings.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003e\u003cb\u003e2.2 Data analysis\u003c/b\u003e\u003c/h2\u003e \u003cp\u003eThe transcribed text was analysed using the reflexive thematic analysis method (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e) using NVivo 12 Plus software (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). Reflexive thematic analysis method involved the first author (SG) conducting a systematic process of coding the data to develop themes from the dataset that encompass participant views and experiences on the topic. Codes and themes were discussed and compared against the data with two additional authors (JW and ML) and the resulting themes were checked against the data by the fourth author (AS). Upon conflicting views of themes, codes were reviewed and themes adjusted by SG and AS. Revised themes were checked and agreed upon by JW and ML, reaching consensus.\u003c/p\u003e \u003c/div\u003e"},{"header":"3 Results","content":"\u003cp\u003eTwo focus groups were conducted with a total of 11 participants. All participants identified as female. Participants were from Queensland (n\u0026thinsp;=\u0026thinsp;7), Victoria (n\u0026thinsp;=\u0026thinsp;2), Australian Capital Territory (ACT) (n\u0026thinsp;=\u0026thinsp;1) and New South Wales (NSW) (n\u0026thinsp;=\u0026thinsp;1) living in a range of metropolitan and regional areas. Saturation was believed to be reached at the conclusion of the second focus group.\u003c/p\u003e \u003cp\u003eThematic analysis of the data revealed several shared experiences amongst participants. Three primary themes were developed from the dataset describing these experiences, with 2\u0026ndash;3 subthemes within each theme, as listed in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThemes and subthemes developed from the dataset\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThemes\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSubthemes\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1. Feeling unheard, neglected and disempowered\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026bull; Getting a diagnosis requires long term persistence: being unheard and disbelieved\u003c/p\u003e \u003cp\u003e\u0026bull; Believed but still unheard: receiving unwanted and unsuitable treatments\u003c/p\u003e \u003cp\u003e\u0026bull; Mental health is impacted from all-consuming burden of disease, disempowerment and unmet healthcare needs\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2. Receiving poorly coordinated and informed care\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026bull; Lack of information and guidance\u003c/p\u003e \u003cp\u003e\u0026bull; Resistance from healthcare providers: lack of referral and collaborative care\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3. Experiencing financial vulnerability due to health system failure\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026bull; Unfair and unfeasible costs of healthcare for endometriosis\u003c/p\u003e \u003cp\u003e\u0026bull; Sacrificing care over cost of living and insecurity in employment\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003e3.1 Theme 1: Feeling overlooked, neglected and disempowered\u003c/h2\u003e \u003cp\u003eThe first theme identified covered participants overall experience with healthcare providers of feeling unheard and neglected. Within the theme, one sub-theme addresses the long term persistence required to reaching a diagnosis. The second sub-theme goes on to address follow up experiences of receiving unsuitable treatments after finally reaching a diagnosis; while the third sub-theme addresses the issue that mental health is negatively impacted from the all-consuming burden of disease. Negative experiences within the medical system were unanimous amongst participants in our study, leading to an overall experience of disempowerment. Within these experiences, participants consistently reported feeling neglected within the medical system.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I just found I was very neglected.\u0026rdquo;\u003c/em\u003e P2\u003c/p\u003e \u003cp\u003eRather than being in control of their own treatment and healing journey, some participants reported a sense of disempowerment in feeling like the doctor was in control and they were there as inactive participants, solely to follow directions.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI feel like often with the doctors, they're in control. And they're handing out kind of directions\u003c/em\u003e.\u0026rdquo; P1\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cb\u003eGetting a diagnosis requires long term persistence: being unheard and disbelieved\u003c/b\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe first sub-theme within theme one, reflects participant reports of the significant persistence required to receive a diagnosis due to being unheard and/or disbelieved by healthcare providers. Most participants described the experience of being overlooked and neglected as influencing the time it took to receive a diagnosis. Within the experience of being unheard, some participants reported having to plead with healthcare providers to investigate their symptoms.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;It's almost like you have to plead your case to medical professionals\u0026rdquo;\u003c/em\u003e P7\u003c/p\u003e \u003cp\u003eMost participants had either consulted with multiple healthcare providers, or persisted with multiple consults with the same provider before having their symptoms investigated, with some participants reporting that the issue of being unheard and overlooked in the medical system had a secondary effect of long wait time to diagnosis and treatment.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;it took me about 10 years to get a diagnosis\u0026hellip; I went to several different specialists. And I literally had to convince this specialist that I ended up receiving my surgery from that I had it [endometriosis]. And sure enough, I had stage 4 endometriosis\u0026rdquo; P9\u003c/em\u003e \u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eIt took me about 18 months of telling her [GP] that something's really not right before she was like, okay, we need to send you to a gynaecologist\u003c/em\u003e\u0026rdquo; P11\u003c/p\u003e \u003cp\u003eIn addition to the difficulty and long wait times to receive a diagnosis, some participants were then spending many years working with treatment options provided through formal healthcare pathways without having their healthcare needs met.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I've had about seven [surgeries] and nothing [no symptom change]\u0026rdquo;\u003c/em\u003e P7\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cb\u003eBelieved but still unheard: receiving unwanted and unsuitable treatments\u003c/b\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe second sub-theme within theme one reflects participant experiences after achieving a diagnosis, describing how the experience of being unheard did not end once a diagnosis had been received. Upon eventually receiving a diagnosis, participants reported further experiences of disempowerment regarding the treatments they were prescribed. Most participants described situations of mismanagement where treatments were prescribed that were either not wanted or not suitable. For example, treatments that came with negative side effects, insignificant symptom change or risk of dependence.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I'm still in pain most days [with Mirena IUD], I'm still bleeding, like every single day a little bit.\u0026rdquo;\u003c/em\u003e P5\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI'm extremely sensitive to all pharmaceuticals and I\u0026rsquo;ve had a few surgeries lately, and I just get really bad reactions from them\u003c/em\u003e\u0026rdquo; P2\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI was always given endone and Tramadol and things like that. And then the worst my pain got my doctor prescribed Valium to me...And I never got it because when I looked into it, it\u0026rsquo;s just going to be another prescription we're going to be addicted to\u0026hellip; So that was something that was always kind of pushed down my throat by my GP, which I never wanted to take\u003c/em\u003e\u0026rdquo; P10\u003c/p\u003e \u003cp\u003eIn addition to the prescription of unsuitable treatments with negative side effects, some participants felt they were being prescribed medications long term that were unsuitable for long term use and not addressing the underlying problem.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003e13 or 14 years on, it's not a sustainable option to be prescribing a medication that has long-term side effects\u0026hellip; endone will only do so much as the bandaid fix\u0026hellip; everything is a bandaid\u003c/em\u003e\u0026rdquo; P7\u003c/p\u003e \u003cp\u003eMost participants reported the experience of being overlooked and unheard continued when they were unsatisfied with the treatments they were using. When unsuitable treatments were prescribed, those participants felt disregarded when they expressed these concerns to their healthcare provider.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;And I went to the doctor and said I don't know if I want this [Mirena IUD] anymore. I didn't want to go on the pill because I didn't feel like I liked what it did to my body. And I sort of wanted it out and she just said to put up with it.\u0026rdquo;\u003c/em\u003e P5\u003c/p\u003e \u003cp\u003eIn addition, some participants reported having invasive treatments that proffered no benefit such as multiple surgeries with no change in symptoms, or in some cases a worsening of symptoms.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI had seven laps [laparoscopies]. And my only option really was now to just get everything cut out because of the scar tissue\u003c/em\u003e\u0026rdquo; P4\u003c/p\u003e \u003cp\u003eDespite surgery being the most common medical treatment for endometriosis, most participants reported surgery to be an ineffective or an unsuitable treatment for their endometriosis. In some cases, surgery had worsened symptoms for participants, leading them to feel like they have no treatment options left.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I've had surgery four times, and every time I've had it come back, if not more aggressive, so I'm kind of stuck in this place where I'm not sure what my options are anymore\u0026rdquo;\u003c/em\u003e P10\u003c/p\u003e \u003cp\u003eSome participants expressed a sense of frustration with the lack of options offered to them through the healthcare system. Most of those participants reported that the oral contraceptive pill was the only non-invasive treatment on offer from their medical providers.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I think it's just the lack of options that we're all getting, I mean for myself, going to the doctors and [doctor] being like, oh no, just go on the pill\u0026rdquo;\u003c/em\u003e P2\u003c/p\u003e \u003cp\u003eAcross the journey of care leading to surgical or unsuitable treatments, participants described situations where they felt they were treated more like a disease rather than a person when being overlooked by medical providers. In one case, a surgical procedure led to adverse outcomes for the woman including removal of a healthy organ and initiating menstrual symptoms that had not been present previously.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I went to hospital and my CRP was really high so they took me straight into surgery thinking maybe it was atypical presentation of appendicitis, they took my appendix out even though it wasn\u0026rsquo;t my appendix and that's when they diagnosed me with endo in the surgery. So prior to that I had no problems with my cycle no pain or anything. But since then, because probably all the inflammation that I had after the surgery and poking prodding I've had some shockers of periods\u0026rdquo;\u003c/em\u003e P3\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cb\u003eMental health is impacted from all-consuming burden of disease, disempowerment and unmet healthcare needs\u003c/b\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe third sub-theme within theme one reflects the all-consuming burden of endometriosis and its impacts on mental health. Most participants in our study reported poor mental health as an indirect effect of the all-consuming burden of endometriosis \u0026ndash; relating to both the symptoms of the condition itself, and the impacts of navigating the healthcare system, not having healthcare needs met and feeling disempowered within the system. All participants agreed that having endometriosis takes a toll on mental health.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eIt's really hard on people's mental health\u003c/em\u003e\u0026rdquo; P6\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;That mental side was definitely huge for me\u003c/em\u003e.\u0026rdquo; P2\u003c/p\u003e \u003cp\u003eSome participants experienced stress and anxiety directly linked to experiences within the healthcare system and the task of consulting with their medical provider. This anxiety was linked to the need to tell and re-tell their story numerous times to health professionals.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003e\u0026hellip;medical induced kind of anxiety comes with reiterating your story for the 100th time\u0026hellip; it hurts to breathe, all I do is cry.\u003c/em\u003e\u0026rdquo; P7\u003c/p\u003e \u003cp\u003eWhile other participants attributed deteriorating mental health to poor quality of life and ongoing pain, exacerbated by healthcare experiences and a lack of accessible mental health support.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI didn't have quality of life. And I was just watching myself and my mental health and everything disappear down the drain\u003c/em\u003e\u0026rdquo; P4\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;There was definitely no mental support at all for it\u0026hellip;\u0026rdquo; P2\u003c/em\u003e \u003c/p\u003e \u003cp\u003eFor one participant, a lack of accessible mental health support confounded by the burden, frequency and extent of pain with no sustainable relief, led to suicidal ideation.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI've contemplated and attempted suicide before because what can take the pain away, me not breathing anymore\u003c/em\u003e\u0026rdquo; P7\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003e3.2 Theme 2. Receiving poorly coordinated and informed care\u003c/h2\u003e \u003cp\u003eThe second theme covers experiences of receiving poorly coordinated and informed care at a health system level. Within the theme, the first sub-theme addresses the lack of information and guidance provided, and the second sub-theme addresses the lack of and provider resistance to collaborative care. Participants reported using a wide range of healthcare types, spanning both TCIH and biomedicine. Biomedical and non-TCIH care types used included surgery, progesterone, hormone replacement and oral contraceptives, CBD oil, pelvic physiotherapy and psychology. TCIH types used included acupuncture, herbal medicine, lymphatic drainage, naturopathy, nutritional medicine, osteopathy and various self-management strategies including transcutaneous electrical nerve stimulation (TENS) machines, and lifestyle medicine approaches such as yoga, swimming and dietary changes. Despite the need and expectation for multi-disciplinary care, participants reported the delivery was often absent from the health care that is accessible to them at a system level. Some participants reported consulting with multiple providers to find a suitable referral or care plan to meet their healthcare needs, positing poor coordination of care.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;my gynaecologist this week, I asked her\u0026hellip; is there a naturopath that you would recommend or therapy that you would recommend that I should be doing as well? Because she recommended physio therapy, the physiotherapist recommended massage, they recommended tens machines.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e With a lack of integration or coordination of care and information at the system level, some participants felt left on their own to educate themselves and find complementary medicine and other care types outside of what was offered through the formal medical pathways.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I really had to do my own digging... I feel like you find most of your information on social media\u0026rdquo; P9\u003c/em\u003e \u003cdiv class=\"BlockQuote\"\u003e \u003cp\u003e \u003cb\u003eLack of information and guidance\u003c/b\u003e \u003c/p\u003e \u003c/div\u003e \u003c/p\u003e \u003cp\u003eAlthough participants reported needing, expecting and self-educating about multi-disciplinary care, many reported a lack of information provided within the healthcare system regarding treatments, management and appropriate referral for endometriosis. Due to this lack of coordinated and informed care some participants reported finding some of the most helpful treatments entirely by accident, and expressed a sense of frustration at the lack of information shared by healthcare professionals.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI kind of had this moment where I thought to myself, why has it taken this long? There was even a little bit of resentment there with the healthcare system and all these specialists and my regular relationship with my GP, why has no one mentioned this [diclofenac suppository] before?\u0026rdquo;\u003c/em\u003e P7\u003c/p\u003e \u003cp\u003eIn addition to a lack of information, some participants reported a lack of provider knowledge on endometriosis and related pain management strategies, adding to the difficulties in receiving diagnosis and effective treatments.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003ethen you also have the fact that we don't always have GPs and gyno\u0026rsquo;s who know or understand what this condition is. And same with other specialists\u003c/em\u003e\u0026rdquo; P6\u003c/p\u003e \u003cp\u003eWhile describing the experience of needing to self-educate about endometriosis management, some participants reported receiving more information from TCIH providers than in the medical system. Though even accessing this resource of information was the result of self-directed activity rather than any referral:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I had to source my own way of finding everything, especially going to my naturopath.\u0026rdquo;\u003c/em\u003e P2\u003c/p\u003e \u003cp\u003eThe lack of information participants described extended beyond endometriosis management. Some participants also reported a lack of information about rehabilitation and recovery following surgery. Those participants felt unsupported after surgery with care ending the moment the patient left the operating theatre. Most participants described receiving no post-operative guidance on recovery and condition management moving forward.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;the kind of doctor/surgeon, hospital side of it is really lacking in how to support women post-surgery, with their pain management and getting their lifestyle and wellbeing and everything back on track so they can actually live again\u0026rdquo;\u003c/em\u003e P1\u003c/p\u003e \u003cp\u003eFor one participant, the lack of post-operative guidance and rehabilitative care led to the presentation of new pain symptoms arising.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;even just that six weeks post-surgery, just rehabbing, supporting your body properly, endo-aside, isn't even communicated... I've had chronic low back pain now for six months [post-surgery]\u0026rdquo;\u003c/em\u003e P3\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cb\u003eResistance from healthcare providers: lack of referral and collaborative care\u003c/b\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIn addition \u0026ndash; and contributing to \u0026ndash; the lack of information provided to participants about endometriosis treatments and management, was a lack of referral and collaborative care amongst healthcare providers where all providers seemed unwilling to move beyond their professional ideologies by supporting patients using multiple healthcare types. Some participants described feeling judged and unsupported in their healthcare and treatment decisions by both TCIH and biomedical providers. Those participants reported that some TCIH providers were not supportive of their choices around medical treatments (e.g. hormonal therapies), putting them in a position of feeling like they had to choose between healthcare types, rather than be supported by both. Similarly, some medical providers were dismissive or uninformed about TCIH therapies, suggesting that biomedical treatments were the only treatments of benefit despite participants having already experienced the benefits of TCIH therapies.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I found that I got a lot of attitude from a lot of people a lot of naturopaths that were like \u0026lsquo;you just need to get it [Mirena IUD] out\u0026rsquo;. I'm like, \u0026lsquo;well, it stops me from haemorrhaging for days on end\u0026rsquo;\u0026rdquo;\u003c/em\u003e P4\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I said to the surgeon, \u0026ldquo;so I\u0026rsquo;ve read some studies about acupuncture\u0026rdquo;. And she's like, Oh, no, none of that works. And luckily, I've had experience with acupuncture and naturopathy before and so I knew, okay, I should go\u0026rdquo;\u003c/em\u003e P1\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;She [gynaecologist] pretty much said the only reason I should go see a naturopath again, is if I want to lose weight... And I was like, I need a new gynaecologist.\u0026rdquo; P8\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe majority of participants had already experienced the benefits of therapies outside of biomedicine and wanted a collaborative approach to treatment amongst TCIH, allied health and medical providers. Those participants also believed that it is the responsibility of health care providers themselves to establish interprofessional lines of communication, rather than the patient endeavouring to establish those lines of communication.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eIt's up to the allied health professionals to bridge that gap. It's not up to the client themselves, because that's too much pressure for us to try and make everyone play nice\u003c/em\u003e.\u0026rdquo; P4\u003c/p\u003e \u003cp\u003eWhen discussing what the participants want from healthcare, most described wanting collaborative (multi-disciplinary) care which participants associated with feeling supported in their healthcare decisions.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;It\u0026rsquo;s supposed to be complementary. You're supposed to be like, this is my situation. Can you support me on this not change it?\u0026rdquo;\u003c/em\u003e P3\u003c/p\u003e \u003cp\u003eParticipants felt most supported by healthcare providers when those providers respected their healthcare choices and were able to work with those choices collaboratively.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;The naturopath I work with he's really great\u0026hellip; like I came to him said I'm doing acupuncture, I'm on the pill. He's like, \u0026lsquo;yep, okay, great. I'll just work in around all of that\u0026rsquo;\u0026hellip; I think that's really important\u0026rdquo;\u003c/em\u003e P1\u003c/p\u003e \u003cp\u003eParticipants also reported wanting increased frequency of counselling and psychological support within the healthcare and referral system.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI\u0026rsquo;d just really like to be seeing a psychologist every two weeks\u003c/em\u003e.\u0026rdquo; P3\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI think more frequent sessions with a counsellor.\u0026rdquo;\u003c/em\u003e P6\u003c/p\u003e \u003cp\u003eWithin a collaborative, multi-disciplinary approach that included psychological support, participants reported consistent pain management and a holistic approach to endometriosis management as key healthcare priorities.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003emy primary goal at the moment is consistent pain management, and a holistic approach with kind of ongoing healing\u003c/em\u003e\u0026rdquo; P7\u003c/p\u003e \u003cp\u003eAdditionally, in order to access the holistic approach participants wanted, the majority of participants believed more natural alternatives to pharmaceutical treatment options including naturopathy and acupuncture being accessible through the health system as an allied health service are needed.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eWe've got like the allied health care plans that we can get from the doctors and naturopathy and acupuncture isn't covered by that. It'd be good if they could recognise that as an allied health service\u003c/em\u003e\u0026rdquo; P2\u003c/p\u003e \u003cp\u003eFinally, by receiving a more collaborative and supportive approach, the participant\u0026rsquo;s believed this would provide autonomy and an increased sense of control that they experienced as lacking from endometriosis-related healthcare. As one participant expressed below, they believed having autonomy in the healthcare system would alleviate the common experience of feeling a lack of control on their treatment and health trajectory.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Giving you your autonomy. Yeah, a little bit of sense of control because it feels out of control so much of the time\u0026rdquo; P4\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003e3.3 Theme 3. Experiencing financial vulnerability due to health system failure\u003c/h2\u003e \u003cp\u003eThe third theme covers the significant financial burden of endometriosis, putting participants in insecure and vulnerable positions. Within the theme one sub-theme addresses the unfair and unfeasible costs, while the second sub-theme addresses the issue of making sacrifices to cover care alongside insecurity of employment. Interlinked with the multi-layered burdens of endometriosis described in the previous themes, participants are taking on an additional burden \u0026ndash; financially, due to failures of the healthcare system itself.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eYou've got this condition that now you have to adjust your life to, not only mentally, physically but now financially I think is the biggest factor\u003c/em\u003e\u0026rdquo; P7\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cb\u003eUnfair and unfeasible costs of healthcare for endometriosis\u003c/b\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eParticipants reported unanimously that the costs of healthcare to maintain quality of life with endometriosis are not feasible.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;It's not feasible. Not if you want to do it well, and not if you want long term consistent relief\u0026rdquo;\u003c/em\u003e P8\u003c/p\u003e \u003cp\u003eFinancial burden was attributed to those factors described in previous themes, relating to systemic failures where unfeasible costs are unfairly transferred to the patient. The participants largely associated these unfeasible costs with poorly coordinated and informed care as described previously. Within this discussion of costs and coordination of care, most participants reported lack of access to the required care types through the public health system and the \u0026ldquo;trial and error\u0026rdquo; of locating providers with knowledge and experience in endometriosis was an additional issue.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eThere'd be some months that were $500 to $1,000 in trialling different people, different things. So you can be spending a lot of money trying to find someone\u0026rdquo;\u003c/em\u003e P6\u003c/p\u003e \u003cp\u003eMany participants reported out-of-pocket costs upwards of \u003cspan\u003e$\u003c/span\u003e200 per week.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI'm probably spending about $200 a week on treatments and supplements and herbals a week. And then if I need to go into the doctor or anything separately, that's just kind of one off expenses\u003c/em\u003e\u0026rdquo; P1\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI put away $200 every week into an account that is for appointments, supplements, and skincare\u0026rdquo;\u003c/em\u003e P3\u003c/p\u003e \u003cp\u003eOut-of-pocket cost of appointments and products utilised was reported as a common contributing factor to unfeasible costs by most participants. Contributing to this were the different care types needed that are not fully covered by Medicare or attracting no Medicare rebate, and/or being excluded by private health providers, therefore attracting high out-of-pocket costs. Some participants reported being refused cover through private insurance, and not having access to their chosen therapies through allied health care plans.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI tried to go through the private health system, and they pretty much overlooked me because it was a pre-existing disease\u003c/em\u003e\u0026rdquo; P10\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eWe've got the allied health care plans that we can get from the doctors, and naturopathy and acupuncture isn't covered by that\u0026rdquo;\u003c/em\u003e P2\u003c/p\u003e \u003cp\u003eThe high out-of-pocket costs impacted the frequency of access women could utilise the care type (as described in theme two). Most participants reported needing more frequent consultations then they were able to access.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI think sometimes it's the frequency of things that really comes into it like a one-off cost is not too bad. But it\u0026rsquo;s how often you should be going versus how often you can afford it\u0026rdquo;\u003c/em\u003e P6\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cb\u003eSacrificing care over cost of living and insecurity in employment\u003c/b\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eExtensive out-of-pocket costs of endometriosis-related healthcare led some participants to reportedly have to choose between healthcare and quality of life, and living essentials such as food and rent.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u0026hellip;\u003cem\u003ehave to sacrifice or consider, what's more important, my rent, and having a house over my head, or making sure that I'm comfortable enough to be able to manage day in day out\u003c/em\u003e\u0026rdquo; P7\u003c/p\u003e \u003cp\u003eMost participants reported frequently having to make sacrifices and choose between having finances available for essentials and/or leisure and other items, or being able to function well on a day-to-day basis.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI make a choice to spend that money on being able to get up in the morning rather than saving for a holiday or putting that money towards something else.\u003c/em\u003e\u0026rdquo; P1\u003c/p\u003e \u003cp\u003eWhile quality of life was impacted by precarious financial situations for some participants, most participants reported the impacts of endometriosis on employment were a contributing factor to the financial burden and their ability to seek the healthcare they needed.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eIf you don\u0026rsquo;t have flexibility through your workplace, then you're stuck in a position where if you lose your job or you're only contracting or you're self-employed, there are so many variables that obviously will then impact your financial wellbeing which then in turn impacts your ability to seek the medical assistance and care\u003c/em\u003e\u0026rdquo; P7\u003c/p\u003e \u003cp\u003eSome participants reported needing to take extended leave (beyond ordinary leave entitlements) and/or losing one\u0026rsquo;s job or needing to step down due to impacts of the condition.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eThe cost of stepping down at work for me, I had to do that. I had a high stress leadership position and had to step back because I couldn't do it when I was having high flares\u003c/em\u003e\u0026rdquo; P6\u003c/p\u003e \u003c/div\u003e"},{"header":"4 Discussion","content":"\u003cp\u003eThis study aimed to identify the healthcare experiences and needs of women with endometriosis who engage with healthcare providers outside of the biomedical system. In doing so, the study identifies significant gaps between the healthcare women with endometriosis need, and the healthcare they receive. It\u0026rsquo;s important to note that by sampling women who have accessed healthcare outside of biomedicine, the sample may be more likely to have unmet healthcare needs. However, the findings are not disparate from the findings of other studies with women with endometriosis from different samples, as highlighted in the forthcoming discussion. Research shows receiving a diagnosis of endometriosis is often delayed with the average time to diagnosis being seven years (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e), meaning people diagnosed with endometriosis have often been experiencing symptoms for a number of years prior to the point of diagnosis. This study reinforces the experiences of women with endometriosis and chronic pelvic pain in other research, in that they are experiencing significantly long time periods to diagnosis, even while suffering symptoms (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e), and adds context to the diagnostic delays by revealing ways the health system is failing to meet health care needs of this population, in part by delaying proper investigation of symptoms. Participants in this study attributed lengthy times to diagnosis to being dismissed and not believed by health care providers, and to being disempowered within the healthcare system. Women in this study also had the experience of being neglected and overlooked \u0026ndash; reiterating the experiences of women with endometriosis in other research, who reported healthcare to be inadequate primarily due to medical providers having limited endometriosis knowledge, menstrual stigma, or not being listened too (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). Furthermore, a common concern of women in our study was about communication about and side effects of treatments when they were finally provided, and lack of information following surgery and surgical recovery \u0026ndash; concerns that have been reported by women with endometriosis from other samples in previous research (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eFurther to the experience of disempowerment in their treatment journey, the study demonstrates participants have often been effectually failed by the healthcare system. Despite participants in this study knowing and communicating what healthcare types they needed and wanted in order to manage the condition (often self-directed through self-education and/or an expensive \u0026lsquo;trial-and-error\u0026rsquo; process), their healthcare needs have not been met inside the healthcare system, requiring going outside traditional systems to access treatments. This study identifies an issue of health system failure primarily through inaccessibility of services, lack of knowledge and understanding of endometriosis, and poorly coordinated and informed care where practitioners are either not knowledgeable about medical or TCIH treatments, are dismissive of one or the other, or are not open to the interprofessional communication, treatment and referral required and requested by patients. Similarly, other research has found women with endometriosis reporting that negative experiences with healthcare professionals has led to their diagnostic delays (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e) and that women with endometriosis are seeking and engaging with multiple different health providers as a result (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e), highlighting the need for co-ordinated multidisciplinary care at a systems level. To address inaccessibility of services and the need for more co-ordinated care, recommendations have been made for a more expansive chronic disease management plan (CDMP) as a potentially effective means to deliver interdisciplinary care to women with endometriosis (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e), a recommendation which may alleviate some of the systemic issues and align with the health care needs identified in this study.\u003c/p\u003e \u003cp\u003eAlarmingly, and further to the systemic failure to meet healthcare needs of women with endometriosis, the women in this study were also reportedly experiencing harm and neglect within the system (often disguised as \u0026lsquo;treatment\u0026rsquo;). This was evidenced in the common experiences amongst participants of being prescribed treatments they did not want, with significant adverse side effects (and/or drug dependency), and numerous invasive treatments (surgical procedures) with no stated or obvious benefits \u0026ndash; including one case where a healthy organ was removed by mistake before diagnosing endometriosis. In a condition that is more prevalent than diabetes (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e), this poses important questions as to why women have continued to experience medical and health care harm and neglect, despite coordinated attempts to improve care (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e) and despite the release of multiple clinical guidelines for endometriosis (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). Given that endometriosis is predominantly a female condition characterised by chronic pain, the women with endometriosis in this study may have experienced a form of medical misogyny and gendered violence within healthcare that has been revealed in other research (\u003cspan additionalcitationids=\"CR26\" citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). One body of research undertakes a thorough exploration of deeply entrenched medical discrimination, and how females (and even more so females of colour) bear the burden of medical discrimination through an investigative journalistic lens and specific to women with endometriosis (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). The study also highlights the ways in which people with chronic illnesses such as endometriosis begin to trust one another more than medical practitioners due to repeated exposure to a system that fails them \u0026ndash; adding context to participant reports in our study of depending on self-education and self-referral for effective supports.\u003c/p\u003e \u003cp\u003eIn addition to the reports of neglect, harm and disempowerment experienced by participants, this study identified a resistance from healthcare providers (both TCIH and biomedical health professionals) culminating in a lack of referral and a lack of collaborative care. Given that Australian and international guidelines (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e) indicate the need for interdisciplinary care for endometriosis, these did not seem to have translated to practice at the time of the study. It should be noted the study was conducted the same year as the release of the Australian clinical practice guideline so there may not have been time for translation to practice \u0026ndash; although three years following the release of the Australian national action plan. As such, follow up research should be conducted with patients (to assess the level to which their health care needs are being met after such initiatives), and with health care providers (to assess the development of their knowledge and understanding of the condition and current treatments).\u003c/p\u003e \u003cp\u003eAlongside system and allied health access failures where treatment options offered to our participants through formal health system pathways did not match their treatment preferences, the resistance of healthcare providers to offer informed and collaborative care was identified in this study as contributing to the great financial burden participants reported experiencing. For example, our participants reported wanting access to TCIH treatments they know they benefit from while currently the out-of-pocket costs are unfeasible and the communication and collaboration between TCIH and biomedical practitioners is lacking. The combination of these factors appears to subsequently link to the poor and declining mental health reported by participants, an aspect of their healthcare needs that again participants in the study reported as unmet. Previous research shows relationships between endometriosis symptoms and mental health issues, recognising the need for personalised (interdisciplinary) endometriosis healthcare to include psychological care (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). Current evidence also shows an increased risk for mental health conditions in people with endometriosis (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e), and the need to investigate suitable mental health interventions for this population. This study reinforces previous research identifying the need for financially viable psychological care options for women with endometriosis, as well as the need to identify effective TCIH therapies for endometriosis and avenues for their inclusion in formal health system pathways.\u003c/p\u003e \u003cp\u003eIn summary, many aspects of this study align with experiences of women with endometriosis in other countries and in other research including the great physical burden and impacts on quality of life, significant psychological and psychosocial burden, diagnostic delays, lack of healthcare provider knowledge and poor doctor-patient relationships, receiving insufficient and contradictory information, impacts on employment, financial burden and the increased rate of seeking help through naturopathic and TCIH treatments after insufficient help through biomedicine (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). As in all research, this study has limitations. These include the small sample size characteristic of qualitative research (which also becomes a strength in that qualitative research allows for the exploration of complex narratives shared by the women of their lived experiences). The limitations also include the participant sample being women with endometriosis who had consulted a naturopath for endometriosis. As such, this sample may impact some of the findings such as where women who have consulted a health practitioner outside of biomedicine may be more likely to have previously experienced dissatisfaction of care within biomedicine. However, as the findings in this research do not significantly deviate from the trends in previous research the overall themes in participants experiences may be unique to this sample but are not substantially set apart from experiences reported by other samples. In addition, the study has not captured the experience of gender-diverse individuals living with endometriosis, who are likely to have different, and additional challenges within the healthcare system. Although gender-diverse folk were not excluded from this study, all participants who responded to recruitment notices identified as women assigned female at birth. Targeted future research is needed to identify the healthcare experiences and needs of gender-diverse individuals with endometriosis.\u003c/p\u003e"},{"header":"5 Recommendations and Conclusion","content":"\u003cp\u003eThe findings of this study reveal that women are consulting with TCIH providers after lengthy, financially burdensome and often harmful \u0026ldquo;trial-and-error\u0026rdquo; processes within the medical system usually spanning many years. It also reveals the costs of endometriosis health care to be unfeasible (and unfair), and that healthcare providers across the board (medical, TCIH and allied health alike) require up to date education and information on endometriosis - including pathogenesis, contributing factors, treatment and management options and the side effects and adverse effects that may come with those treatments. Interprofessional communication and collaboration is needed between medicine, allied health and TCIH practitioners. Improvement at a health systems level is needed including the development of clear referral pathways and inclusion in allied health plans of such health care types. A more comprehensive review of the healthcare needs of people with endometriosis is recommended, to determine those treatments most helpful in management to be included in allied health care and chronic disease management plans through public (and private) funding arrangements. More research is needed about the benefits of TCIH therapies for endometriosis so that healthcare providers can provide clear and relevant information to patients on treatments they may benefit from. This may also provide pathways for more treatments to be offered through allied health care and/or CDMP\u0026rsquo;s to alleviate the financial burden of endometriosis related healthcare and have potential positive subsequent effects on mental health by alleviating financial stress and the potential improvement of accessibility of psychological care. Many of the concerns and experiences shared by participants in this study have been addressed in the Australian Clinical Practice Guideline for the Diagnosis and Management of Endometriosis that was published the same year this study was undertaken. Follow up research is now needed to determine if those clinical guidelines have improved healthcare experiences for people with endometriosis and the next steps in meeting their health care needs and continue improving quality of life for people with endometriosis.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eCDMP \u0026ndash; chronic disease management plan\u003c/p\u003e\n\u003cp\u003eTCIH \u0026ndash; traditional, complementary and integrative healthcare\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eHuman Ethics and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was approved by the Human Research Ethics Committee (HREC) at Southern Cross University (approval number: 2020/144). Written informed consent was provided by all participants.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets analysed during the current study are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eJW is the director of the National Centre for Naturopathic Medicine at Southern Cross University. AS is a director of the Australian Research Centre in Complementary and Integrative Medicine. ML is both Adjunct Associate Professor at Southern Cross University, and Implementation Scientist at JBI, University of Adelaide. SG is a PhD candidate at the National Centre for Naturopathic Medicine at Southern Cross University.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSG was financially supported by an Australian Government Research Training Program Scholarship at the time of research which provided tuition and a living stipend for completion of a higher degree by research, and received funding from Southern Cross University to cover research costs. The funder had no role in the conceptualization, design, data collection, analysis, decision to publish, or preparation of the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll authors contributed to conception of the research question. SG performed data collection alongside AS and JW. SG performed data analysis. SG, AS, JW and ML contributed to triangulation of data. The first draft of the manuscript was written by SG. All authors critically revised and edited the manuscript. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to acknowledge the participants who shared their experiences for the purpose of research and betterment of endometriosis healthcare.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eHorne AW, Missmer SA. Pathophysiology, diagnosis, and management of endometriosis. BMJ. 2022;379:e070750.\u003c/li\u003e\n\u003cli\u003eSinclair J, Abbott J, Mikocka-Walus A, Ng CHM, Sarris J, Evans S, et al. \u0026quot;A glimmer of hope\u0026quot; - Perceptions, barriers, and drivers for medicinal cannabis use amongst Australian and New Zealand people with endometriosis. Reprod Fertil. 2023;4(4).\u003c/li\u003e\n\u003cli\u003eArmour M, Sinclair J, Ng CHM, Hyman MS, Lawson K, Smith CA, et al. Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: an Australian survey. Scientific Reports. 2020;10(1):16253.\u003c/li\u003e\n\u003cli\u003eAustralian Bureau of Statistics. Diabetes Canberra: Australian government; 2023 [Available from: https://www.abs.gov.au/statistics/health/health-conditions-and-risks/diabetes/latest-release.\u003c/li\u003e\n\u003cli\u003eFrayne J, Milroy T, Simonis M, Lam A. Challenges in diagnosing and managing endometriosis in general practice: A Western Australian qualitative study. Australian Journal for General Practitioners. 2023;52:547-55.\u003c/li\u003e\n\u003cli\u003eEvans S, Villegas V, Dowding C, Druitt M, O\u0026apos;Hara R, Mikocka-Walus A. Treatment use and satisfaction in Australian women with endometriosis: a mixed-methods study. Internal Medicine Journal. 2022;52(12):2096-106.\u003c/li\u003e\n\u003cli\u003eYoung K, Fisher J, Kirkman M. Women\u0026apos;s experiences of endometriosis: a systematic review and synthesis of qualitative research. J Fam Plann Reprod Health Care. 2014;41(3):225-34.\u003c/li\u003e\n\u003cli\u003eArmour M, Lawson K, Wood A, Smith CA, Abbott J. The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: A national online survey. PLoS One. 2019;14(10):e0223316.\u003c/li\u003e\n\u003cli\u003eRedmond R, Steel A, Wardle J, Adams J. Naturopathy utilisation by Australian women with diagnosed endometriosis: A cross-sectional survey. Complement Ther Clin Pract. 2022;46:101539.\u003c/li\u003e\n\u003cli\u003eMalik A, Sinclair J, Ng CHM, Smith CA, Abbott J, Armour M. Allied health and complementary therapy usage in Australian women with chronic pelvic pain: a cross-sectional study. BMC Womens Health. 2022;22(1):37.\u003c/li\u003e\n\u003cli\u003eO\u0026apos;Hara R, Rowe H, Fisher J. Managing endometriosis: a cross-sectional survey of women in Australia. J Psychosom Obstet Gynaecol. 2022;43(3):265-72.\u003c/li\u003e\n\u003cli\u003eAlase A. The Interpretative Phenomenological Analysis (IPA): A Guide to a Good Qualitative Research Approach. International Journal of Education and Literacy Studies. 2017;5(2).\u003c/li\u003e\n\u003cli\u003eGoodyear-Smith F, Jackson C, Greenhalgh T. Co-design and implementation research: Challenges and solutions for ethics committees. BMC Medical Ethics. 2015;16(1):78.\u003c/li\u003e\n\u003cli\u003eKrueger RA, Casey MA. Focus groups : a practical guide for applied research. 4th edition. ed. Thousand Oaks, California: Sage; 2009.\u003c/li\u003e\n\u003cli\u003eOtter.ai. Using Otter 2025 [Available from: https://help.otter.ai/hc/en-us/categories/360003569513-Using-Otter.\u003c/li\u003e\n\u003cli\u003eBraun V, Clarke V. Thematic analysis : a practical guide. London: SAGE Publications Ltd; 2022.\u003c/li\u003e\n\u003cli\u003eLumivero. NVivo (version 14). 2023.\u003c/li\u003e\n\u003cli\u003eKatz C, Evans S, Mikocka-Walus A. \u0026apos;Listen to women as if they were your most cherished person\u0026apos;: Australian women\u0026apos;s perspectives on living with the pain of endometriosis: A mixed-methods study. J Health Psychol. 2024:13591053241250101.\u003c/li\u003e\n\u003cli\u003eMarki G, Vasarhelyi D, Rigo A, Kalo Z, Acs N, Bokor A. Challenges of and possible solutions for living with endometriosis: a qualitative study. BMC Womens Health. 2022;22(1):20.\u003c/li\u003e\n\u003cli\u003eHawkey A, Chalmers KJ, Micheal S, Diezel H, Armour M. \u0026ldquo;A day-to-day struggle\u0026rdquo;: A comparative qualitative study on experiences of women with endometriosis and chronic pelvic pain. Feminism \u0026amp; Psychology. 2022;32(4):482-500.\u003c/li\u003e\n\u003cli\u003eAustralian Institute of Health and Welfare. Endometriosis 2023 [Available from: https://www.aihw.gov.au/reports/chronic-disease/endometriosis-in-australia/contents/how-common-is-endometriosis.\u003c/li\u003e\n\u003cli\u003eAustralian Government Department of Health. National action plan for endometriosis Australia: Department of Health; 2018 [Available from: https://www1.health.gov.au/internet/main/publishing.nsf/Content/endometriosis.\u003c/li\u003e\n\u003cli\u003eRoyal Australian and New Zealand College of Obstreticians and Gynaecologists. Australian clinical practice guideline for the diagnosis and management of endometriosis. Melbourne, Australia; 2021.\u003c/li\u003e\n\u003cli\u003eEuropean Society of Human Reproduction and Embryology. Endometriosis guideline of European society of human reproduction and embryology. 2022.\u003c/li\u003e\n\u003cli\u003evon Benzon N, Hickman-Dunne J, Whittle R. \u0026apos;My doctor just called me a good girl and I died a bit inside\u0026apos;: From everyday misogyny to obstetric violence in UK fertility and maternity services. Soc Sci Med. 2024;344:116614.\u003c/li\u003e\n\u003cli\u003eMesquita Filho M, Marques TF, Rocha ABC, Oliveira SR, Brito MB, Pereira CCQ. Sexism against women among primary healthcare workers. Cien Saude Colet. 2018;23(11):3491-504.\u003c/li\u003e\n\u003cli\u003eLindeman-Jarvis T. Let Them Bleed: How Medical Discrimination Keeps Women with Endometriosis and Other Gynecology-Related Diseases and Disorders from Accessing Care: Carleton University; 2022 2024-08-16.\u003c/li\u003e\n\u003cli\u003e\u0026Scaron;kegro B, Bjedov S, Miku\u0026scaron; M, Mustač F, Le\u0026scaron;in J, Matijević V, et al. Endometriosis, pain and mental health. Psychiatria Danubina. 2021;33(suppl 4):632-6.\u003c/li\u003e\n\u003cli\u003eThiel PS, Bougie O, Pudwell J, Shellenberger J, Velez MP, Murji A. Endometriosis and mental health: a population-based cohort study. Am J Obstet Gynecol. 2024;230(6):649 e1- e19.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-womens-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmwh","sideBox":"Learn more about [BMC Women's Health](http://bmcwomenshealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmwh/default.aspx","title":"BMC Women's Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Endometriosis, healthcare experiences, women’s health","lastPublishedDoi":"10.21203/rs.3.rs-6341834/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6341834/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eEndometriosis is a complex, chronic inflammatory condition affecting women and persons assigned female at birth and often characterised by symptoms including chronic pain (pelvic and other pain), fatigue, painful urination and bowel movements, and painful sex along with other comorbidities. Women with endometriosis are frequently dissatisfied with available medical treatments and management. Such dissatisfaction means women with endometriosis are often high users of health care, and use a wide variety of health disciplines, including high use of out-of-pocket and traditional, complementary and integrative health (TCIH) therapies that may be outside of biomedicine. The purpose of this study is to identify people with endometriosis who engage with healthcare providers outside formal biomedical pathways to explore their experiences of the healthcare types they access, have accessed, and their healthcare needs.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eQualitative methods were used where focus groups were conducted during 2021, with Australian participants\u0026thinsp;\u0026gt;\u0026thinsp;18 years diagnosed with endometriosis. Participants were recruited via the Australian endometriosis advocacy organisation QENDO, via social media support groups for endometriosis and via social media pages of clinicians with a clinical focus on endometriosis. The focus groups explored three topics: (i) Healthcare needs and experiences, (ii) experiences with naturopathic medicine, and (iii) healthcare within a group setting. This paper is reporting the results of the first topic (healthcare needs and experiences). Data were analysed using reflexive thematic analysis.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eTwo focus groups were conducted with a total of 11 participants. Three primary themes were developed from the dataset: \u003cem\u003eFeeling unheard, neglected and disempowered, receiving poorly coordinated and informed care\u003c/em\u003e, and \u003cem\u003eexperiencing financial vulnerability due to health system failure.\u003c/em\u003e\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eThe findings of this study reveal that women are consulting with TCIH providers after lengthy, financially burdensome and often harmful \u0026ldquo;trial-and-error\u0026rdquo; processes within the medical system. It also reveals the costs of endometriosis health care to be unfeasible, and that healthcare providers across the board (medical, TCIH and allied health alike) require up to date education and information on endometriosis. Improvement at a health systems level is needed including the development of clear referral pathways and inclusion of TCIH healthcare types in allied health plans.\u003c/p\u003e","manuscriptTitle":"Unheard, uninformed and vulnerable: a qualitative study of women who seek endometriosis care outside of biomedicine","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-04-28 17:19:34","doi":"10.21203/rs.3.rs-6341834/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2025-05-03T05:07:23+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-05-01T14:54:41+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"222927041538486439363081564962140754429","date":"2025-04-26T20:29:01+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"277396041620506559409763029232642119302","date":"2025-04-24T21:10:51+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-04-24T18:41:07+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-04-02T17:51:30+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-03-31T10:33:28+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-03-31T10:30:39+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Women's Health","date":"2025-03-31T05:34:55+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-womens-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmwh","sideBox":"Learn more about [BMC Women's Health](http://bmcwomenshealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmwh/default.aspx","title":"BMC Women's Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"c2f7b119-5c7a-4785-810c-01ebae6257ce","owner":[],"postedDate":"April 28th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-04-28T17:19:34+00:00","versionOfRecord":[],"versionCreatedAt":"2025-04-28 17:19:34","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6341834","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6341834","identity":"rs-6341834","version":["v1"]},"buildId":"M1DPXKE8UapkOyQliHcFZ","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}