Sharing stories, building connections, and regaining control: a qualitative study of cognitive behavioural therapy for endometriosis and persistent pelvic pain

Aim This qualitative study aimed to understand the experiences of participants with endometriosis undertaking a CBT intervention.

Fourteen women who completed an eight-week, online, group-based CBT intervention as part of a randomised controlled trial were included in the study. All participants had endometriosis and persistent pain for at least six months. Inductive reflexive thematic analysis was used to explore meaning and areas of interest.

Four themes were generated that described participants’ experiences, including 1) The need for psychological care across the endometriosis journey; 2) Psychologists are part of the “village” needed to manage endometriosis; 3) “Breaking the cycle” of symptoms and building self-awareness with CBT; and 4) Reframing and regaining “control” of endometriosis, and living well.

CBT was perceived as a needed, and valuable part of endometriosis treatment, and should be offered as part of multidisciplinary endometriosis care. CBT techniques offer an accessible and long-term option for managing endometriosis symptoms.

Endometriosis is a chronic, inflammatory disease affecting one in nine people assigned female at birth (Australian Government Department of Health, Citation2018; Rowlands et al., Citation2020). The condition involves the growth of endometriosis-like tissue in areas outside the uterus (e.g. pelvic peritoneum, ovaries, bladder and bowel), and can present with symptoms of persistent pelvic pain (PPP), heavy bleeding, fatigue and infertility (Johnson et al., Citation2017). These often disabling symptoms commonly lead to time off work, withdrawal from social activities, psychological and emotional distress, contributing to poor quality of life (QoL). Workplace discrimination, judgement by family and friends and invalidation or dismissal from healthcare professionals can further deteriorate mental health (Young et al., Citation2015), self-esteem and self-worth (Cox et al., Citation2003; Denny et al., Citation2018). Unsurprisingly, endometriosis has been associated with an elevated risk of developing mental health disorders, including anxiety and depressive disorders, compared to those without the disease (Gao et al., Citation2020). Feelings of “loss”, “shame” and “uncertainty” are commonly reported by people living with endometriosis, alongside negatively shaped views of self and others (Márki et al., Citation2022). Given that endometriosis can affect all aspects of a person’s life, models of care that address psychosocial health are integral (Horne et al., Citation2017; Márki et al., Citation2022). Despite the promise of multidisciplinary management, the prevailing model of care is biomedical, typically involving surgical procedures and medication, including hormonal treatments (Agarwal et al., Citation2021). However, several issues have been identified, including inconsistent or delayed referral to other specialists, lack of multidisciplinary treatment (Agarwal et al., Citation2021), and the failure to adequately manage or treat symptoms, with up to 60% of individuals reporting PPP despite undergoing multiple medical treatments (De Graaff et al., Citation2013). Consequently, two in three people with endometriosis report being dissatisfied with care, and the majority seek allied health and complementary therapies to manage symptoms (Evans et al., Citation2021). Mental health clinicians represent the second most frequented allied healthcare workers, after physiotherapists (Malik et al., Citation2022). Understanding experiences of psychological support during diagnosis and treatment of endometriosis is needed to improve endometriosis care (Evans et al., Citation2021). Systematic reviews indicate that psychological interventions such as Cognitive Behavioural Therapy (CBT) may be beneficial for people with endometriosis (Donatti et al., Citation2022; Evans et al., Citation2019; L. Van Niekerk et al., Citation2019). In particular, CBT has been shown to improve QoL and functioning in people with chronic pain, providing a model to explore how cognitive processes impact adjustment to chronic diseases such as endometriosis, through mechanisms that include cognitive appraisals, thoughts and beliefs about relevant stressors (Ehde et al., Citation2014; Thorn, Citation2017). Donatti et al. (Citation2022)’s systematic review of psychotherapy for endometriosis, which included aspects of CBT (e.g. psychoeducation, cognitive behavioural techniques) and other multidisciplinary interventions (e.g. physiotherapy, hypnotherapy), found reduced pain severity and improvements to psychological wellbeing and QoL. However, a specific CBT protocol adapted to target pain and functioning in endometriosis has not yet been evaluated, and such disease-specific CBT adaptions have shown to be beneficial in other pain populations (Windgassen et al., Citation2019). Thus, research exploring the benefits of CBT adapted specifically for endometriosis symptoms is needed; in particular, qualitative research to understand participant experiences and concerns (Evans et al., Citation2019; L. Van Niekerk et al., Citation2019). This is consistent with patients’ expressed needs; qualitative research has identified that people with endometriosis believe that CBT should be offered as standard treatment for endometriosis, be conducted by psychologists who understand endometriosis and involve group therapy sessions focused on enhancing self-management and active coping strategies of endometriosis symptoms (Boersen et al., Citation2021). Given the novel nature of an adapted CBT protocol for endometriosis, we need to understand how a CBT intervention is experienced, including the usefulness of CBT techniques and processes of change following engagement through lived experience data. Such consumer perspectives are important in the translation of evidence-based CBT protocols into real-world clinical settings for people with endometriosis. Our qualitative study aimed to understand participant experiences of CBT for endometriosis in the context of their overall endometriosis journey. The study employed an inductive approach to give voice to participant experiences and concerns after participation in a CBT intervention designed for endometriosis, with the ultimate aim to inform clinical practice on the use of CBT for endometriosis and persistent pelvic pain.

& methods Design The study utilised a qualitative design. The study was “nested” within a randomised controlled trial (RCT) assessing the efficacy of CBT and yoga (compared to a treatment as usual control, offering gynaecological education) on biopsychosocial outcomes, as well as the cost-effectiveness of these types of care in people with endometriosis (ACTRN12620000756921). The trial included qualitative post-intervention semi-structured interview questions to assess barriers, enablers and perceived change that occurred throughout the process of participating in the intervention. Ethics approval for the study was obtained from ACTRN12620000756921 and participant informed consent was obtained. Recruitment Study participants were provided information on the trial comparing “mind-body interventions” by physicians or clinical teams within major metropolitan and regional hospitals in Victoria, Australia, online via study advertisements posted on online platforms (e.g. Facebook) or through endometriosis support groups (e.g. Endometriosis Australia). Participants then contacted the trial manager to express their interest in the study, and once signed consent and a physician diagnosis was confirmed, were assessed by a registered or provisional psychologist for relevant study exclusions. Eligible participants were then randomly allocated to groups (yoga, CBT or education; 1:1:1 ratio). Participants for the present study were involved in the first and second cohort of the CBT intervention, between 13 July and 19 October 2021. Participants Participants were included in the study if they were adults over 18 years, diagnosed with endometriosis by a qualified physician (supported by documental evidence) and had experienced PPP for at least six months. The capacity to provide informed consent, access the internet and sufficient English was required. Exclusions for the study included high-risk mental health issues (e.g. active suicidal ideation, with significant comorbid or multiple psychiatric diagnoses, and severe levels of psychological distress), cognitive or physical impairment, an inability to read or write, current pregnancy, and those who had a recent therapist-led course of yoga or CBT (within the past six months). Participants were required to provide informed consent to the broader study and complete the eight-week CBT intervention to be eligible for this qualitative study. Twenty participants were randomly allocated to the first and second CBT cohorts, 18 completed the intervention, and two withdrew at weeks one and two due to changes in personal circumstances and work commitments. Following the completion of the CBT groups, 14 agreed to participate in the qualitative study (4 participants did not respond to follow-up emails), completed semi-structured interviews and were included in the qualitative analysis. Intervention The CBT program was initially drawn from Beverly Thorn’s Cognitive Therapy for Chronic Pain manualised protocol (Thorn, Citation2004) and adapted for endometriosis and PPP. Adaptions were based on the clinical expertise of study researchers, which included an experienced Clinical Psychologist, and a consumer advocate from Endo Help Foundation, Australia. Examples of adaptions included the integration of Session 8 and Session 9 of Thorn (Citation2004)’s protocol (writing about strong emotions and assertiveness) into prior sessions, examples related to endometriosis in client handouts and weekly coping statement cards. The program aimed to provide psychoeducation about persistent pain, practical strategies to manage pain, and techniques to cope with the functional aspects of living with endometriosis to improve pain and QoL (See for session outline). The program consisted of eight weekly group CBT sessions of 120 minutes delivered via Zoom. A Clinical Psychologist facilitated the group sessions under the supervision of a senior Clinical Psychologist. Participants were encouraged to complete CBT-based home practice at least three times per week, and three individual wellbeing check-ins were provided across the eight-week intervention by an experienced nurse on the research team. On average, participants attended seven of the eight sessions (M = 6.64, ranging from 4 to 8), and completed five of the eight weekly homework tasks (M = 5, ranging from 1 to 8). Procedure Participants were interviewed individually online via Zoom, between September and December 2021, by the first author (CD), who introduced herself as an endometriosis researcher and clinical psychologist in training. The majority of participants had met CD through the recruitment process, which aided rapport. A brief outline of the structure and purpose of the interview was provided, and consent for the interview was confirmed verbally. The interview guide was developed by study researchers and informed by the Most Significant Change technique to identify the most meaningful change/s for participants (Dart & Davies, Citation2003). A semi-structured interview was used to gain in-depth personal accounts of participant experiences and obtain data relevant to the research question (Willig, Citation2013). The interview guide began with: “What was your motivation to participate in the mind-body intervention?” The interview subsequently explored topics about being diagnosed with endometriosis (e.g. “What has been your experience of the healthcare system in the treatment of your endometriosis?”) and being a participant in the CBT group (e.g. “Thinking back to your time participating in intervention, what do you think was the most significant change you experienced? Why was it significant?”). The interviews lasted between 32 and 55 minutes, with an average length of 43 minutes. Interviews were audio recorded, de-identified (using participant ID number) and transcribed orthographically (i.e. including pauses, coughing, non-verbal utterances, and inaudible speech (Braun & Clarke, Citation2013) in Microsoft® Word 2023. Analytic approach An experiential qualitative framework was taken to explore meanings, experiences and perspectives in the data, and to focus on participants’ own accounts and interpretations (Braun & Clarke, Citation2013). In doing so, a critical realist approach was applied, which argues that participant experiences are shaped by the world they live in, and that there is a reality to observe and describe (V. A. Braun & Clarke, Citation2022). Within this approach, a phenomenological position guided data analysis regarding what was experienced and how participants experienced it (Neubauer et al., Citation2019). A phenomenological position seeks to “uncover the meaning and central structures, or essences, of a participant’s lived experience with a phenomenon and the contextual forces that shape it” (Bynum & Varpio, Citation2018). Researchers, therefore, attended to participant reflections to better understand the deeper meaning of psychological factors in the diagnosis and treatment of endometriosis, and in the experience of CBT for endometriosis (Bynum & Varpio, Citation2018). Our position acknowledged that researcher values and practices inevitably shape the knowledge they produce (contextualism), and thus, researcher subjectivity was central to the reflexive process (V. A. Braun & Clarke, Citation2022). Authors considered how their identity and position impacted the interpretive process (Lazard & McAvoy, Citation2020). The analysis team included those with insider and outsider perspectives to support a nuanced and comprehensive interpretation of the data, including three researchers with lived experience of endometriosis, expertise in clinical psychology and mind–body interventions, and those who identified as female and those who did not. An inductive, data-driven approach was taken to the data, and researchers reflected on their personal assumptions during data engagement and theme creation (Braun & Clarke, Citation2013). CD used a reflexive diary to record assumptions and the interpretations generated, aiding reflexivity and transparency in the research process, and documented changes to the themes during the phases of data analysis (Nadin & Cassell, Citation2006). Data analysis Reflexive thematic analysis was used to explore patterns of meaning and areas of interest in the data and through considerable interpretive work by the researchers, generate themes underpinned by a central organising concept (Braun & Clarke, Citation2006, Citation2013, Citation2021b). Reflexive thematic analysis fits well with phenomenological or experiential qualitative research, centred on exploring participants’ subjective experiences and sense-making (Braun & Clarke, Citation2021a), which was deemed appropriate to the study’s aims. The analysis also allowed for exploration of wider sociocultural issues across the data set (Braun & Clarke, Citation2021a). Our analysis was guided by the six phases of reflexive template analysis (Braun & Clarke, Citation2006, Citation2021b), as shown in .

Sociodemographic characteristics of participants included in the study are shown in . Participants’ age ranged between 19 and 44 years (n = 14, M = 32, SD = 8.2), with the majority identifying as Australian, where the study took place. The majority were university educated and employed part time. The demographics of first and second cohorts were compared, revealing only a slight difference in sociodemographic factors: cohort 2 included students, whereas cohort 1 did not. N = 14. The ethnicity question allowed multiple responses, thus adds up to more than 100%. Qualitative themes Four themes were created. Themes One and Two examine the role of psychological care in the adjustment and management of endometriosis, and Themes Three and Four documented participant experiences of the CBT intervention. Theme 1 – the need for psychological care across the endometriosis journey Participants described coming to the CBT intervention after experiencing a series of distressing milestones (e.g. being repetitively dismissed by healthcare professionals, family and/or friends; and experiencing long wait times to see a specialist, with large out-of-pocket costs and invasive surgical procedures) that could have been ameliorated by well-timed psychological care. The endometriosis journey was arduous and long, often characterised by years of invalidation, unmet need and disappointment. Key points at which psychological health was tested included adolescence, when first experiences of menstruation were marred by intense pain and bleeding, leading to feelings of loneliness and confusion, and compounded by a lack of validation from care providers. It was really quite isolating, like, yeah, especially because you don’t understand why you really are in so much pain … I was told for so long there is nothing wrong with you, like you have all this is in your head. P13, 25yo The road between the the onset of symptoms and diagnosis was fraught with difficult medical appointments and anxiety, where timely psychological care may have provided the emotional support required to manage the exhaustion and disillusionment described on the journey to diagnosis. For one woman, the trauma experienced during twenty years of undiagnosed endometriosis resulted in a “loss of self, identity and trust in the world”. Another described the experience of “not knowing”: It was exhausting. I would walk out of specialist appointments and be crying because I didn’t have any more answers for what I was going through. I was left to struggle and be in pain, and be confused and have all these questions and never get answers. P7, 22yo Several women waited until their symptoms significantly worsened, even to the point of psychological and physical harm, before deciding, “enough is enough” and seeking further clarity from GPs or specialists. I thought it was just normal. So, I put a lot of stress on myself to push through pain and things like that all the time. I think eventually I hit a mental breaking point, where you can’t keep pushing anymore. P3, 36yo However, diagnosis often left participants with more questions than answers. Hearing news that they would be living with a chronic, incurable health condition was difficult to process, and the need for psychological support was evident. Given diagnosis was only possible with invasive surgery for most participants, this time was often associated with heightened distress. Post-operative care was described as “really poor”, “a bit of a downfall” and “overwhelming”, with some participants being provided with misinformation about surgical outcomes, including being told “everything is fine”, which compounded years of invalidation. Yeah, like quite shocking like how … normative it seemed to them, like it was nothing to them that this was, yeah, like almost coming into a whole new, chapter of my life … and there was just, you know, no support. P13, 25yo Calls for psychological support were requested to exist alongside, not instead of, quality medical care. Participants often reported that their symptoms were dismissed, which at times resulted in life-threatening consequences, such as occurred with the following participant, who attended an emergency department in pain. She described being “fobbed off” with pain medication, to be readmitted later for a perforated ulcer: I was told it was all in my head by a psychiatrist, and I went out of there crying … because all they focus on is [how you are] mentally … especially if you’re on – well, I am on anti-depressants and anti-anxiety tablets … they always put it down to that … so I’ve been misdiagnosed so many times and lately I’ve nearly died because of it … it really does make you double guess whether you are crazy or not. P10, 33yo Diagnosis and treatment were particular pressure points for psychological health. Participants described mounting unmet needs and the vast psychological burden of their journey. They felt “low”, “anxious”, “panic”, “stress”, “depression”, “very on edge and really sad and really angry”, and questioned why psychological support was not provided. Given the hardship of living with endometriosis, the distress associated with managing symptoms, diagnosis and treatment, and the possibility for invasive and even traumatic medical experiences to occur, the provision of psychological therapy became a duty of care issue. You know endometriosis is a life limiting condition, it’s a chronic condition. There is no cure. So why, along with other women’s health issues, aren’t we providing some sort of counselling along with that. P7, 22yo Theme 2 – psychologists are part of the “village” needed to manage endometriosis Almost all participants reported dissatisfaction with the current standard of endometriosis care, which was felt to be siloed and limited to biomedical treatments. Participants mentioned concerns that medication (pain medication and hormonal treatments) could impact mental health negatively. Despite several participants expressing interest in allied health and psychological support, out-of-pocket fees were a significant access barrier. One participant described prioritising their finances and surgical procedure over their psychological wellbeing. Importantly, involvement in the cost-free CBT intervention study motivated a number of participants to engage in psychological treatment. I thought this could be a good way to see how I respond … and whether it would be something, that you know, we need to find the money for and would potentially benefit me in a way. P9, 35yo Participants indicated that a diverse multidisciplinary team was needed to manage their health needs, and to work across the “big-picture” of their condition. … you know, it’s so multifaceted endometriosis … its connected to so many things and it can be affected by so many things. P3, 36yo Participants expressed that part of an adequate assessment and “care plan” for the condition should include taking a full patient history. By “knowing that trauma and stress can also affect a person’s health”, an assessment of psychological comorbidities such as trauma, and coordinating a team of professionals to manage various aspects of the disease were needed. my GP is amazing, my surgeon is amazing, and the physio that I see is phenomenal, the naturopath is great … I have a fantastic village compared to a lot of other women. P9, 35yo However, an adequate care team was not always provided, and participants described being attracted to the CBT intervention as a means to add therapeutic processes, connect to others with endometriosis and discuss aspects of the disease that specialists did not have time to address. So, when you have a multifactorial disease that you are going to see multiple specialists about, you’re the common denominator. So, there is no one making the connections and bringing together ideas. P6, 43yo Despite the perceived need for psychological treatment, CBT was initially daunting for some participants, who reported being “sceptical”, ambivalent, and nervous prior to starting the intervention. Previous experiences of being “let down by the healthcare system” and feeling “like nobody was on my side” contributed to these concerns. Despite initial fears, comfort was found in the presence of other individuals with endometriosis and a facilitator with psychological expertise. Self-disclosure and sharing of endometriosis stories provided a space for participants to understand the varied experiences of the disease, and to build connection, essentially expanding their village. It was so good and it helped me feel less alone … after at least the first three sessions, everyone started to open up and wanted to participate, which is great and were all very supportive of each other and it was sad knowing there’s others out there of course, but also lovely to know you’re not alone. And that’s the biggest thing. P10, 33yo Participants described how sharing their story reduced shame and stigma related to their diagnosis and facilitated “healing” and “empowerment” to keep sharing. Being vulnerable, listened to and supported by others with the disease provided a remedy to the fear, loneliness, and self-doubt experienced up until that point. Probably, yeah, like not to be like ashamed of my condition … there are a lot of people out there with it and it is such a hidden kind of thing, and on the surface level, like there was nothing really that pinpointed all of us had endometriosis … anyone could have it. And I think the fact that we’re willing to stand together and do something that can bond us, is really quite nice. P13, 25yo Connection formed a pathway to (re)build self-confidence and self-advocacy by providing relatable experiences of living with the disease, and a way to navigate the healthcare system and social situations. By hearing from others, participants described an awareness and appreciation of the hardships endured and were able to reflect on their own “strength”, “persistence” and “resilience” throughout the disease course. In doing so, participants were more able to openly discuss the disease with family and friends, and even advocate for themselves at GP and specialist appointments. I went in about the pain and they dismissed me … and this is when I was doing the course, and I finally stood up for myself and said, “no, I’m not leaving here until I get answers, until I get some help”. P10, 33yo Facilitated by improved access to psychological care through the online environment, participants reported being able to manage symptoms in the safety of their own home. … having it [the CBT intervention] virtually, I would say it has become more accessible and you can get a greater variety of people from across Australia or across the world to join in. P4, 25yo Theme 3 – “breaking the cycle” of symptoms and building self-awareness with CBT Participants detailed how CBT was used to conceptualise current concerns; identify physiological, cognitive, emotional and behavioural responses related to endometriosis; and recognise processes that act to maintain or worsen symptoms. Most participants entered the intervention with little to no knowledge about how their thoughts and perceptions influenced the way they felt and behaved (i.e. the mind-body connection). Accordingly, many participants described how the “most interesting” and “fascinating” part of the intervention was connecting their thoughts (e.g. fixating on the worst possible outcome), feelings (e.g. stress, anxiety, low mood), physical sensations (e.g. bloating, pain), and behaviours (e.g. withdrawal), and conceptualising the impact of this on everyday life. I didn’t really think about it [the mind-body connection] much until I started it [the CBT intervention]. But now it has really made me stop. It’s like a whole new world to me … That your mood would impact your energy levels. But I never really thought of it from a pain perspective. That makes sense. So, I didn’t really register or think much about it until we started learning about it in the sessions. P9, 35yo For many, the process of building awareness of negative thought patterns (which at times, occurred “automatically and subconsciously”) was helpful, and aided with pain and emotional regulation. … like overgeneralising or worst-case scenario thinking. That was helpful because I do a lot of that … and just to be conscious of that and let go of those thoughts a little bit more rather than subconsciously indulging them. P8, 34yo Participants described noticing their “trigger cycle” and the factors that exacerbated symptoms of endometriosis. Often, this involved workplace stressors, juggling multiple roles (e.g. partner and parent), and previous difficult experiences and core beliefs related to endometriosis. One participant described how developing an awareness of personal triggers and persistent worry changed the way they viewed and managed symptom flare ups: I created almost like a trigger cycle for myself with work, knowing that I have typically demanding job, I would often get anxious about potentially having a flare up at work and then often that would then lead to a flare up … I’ve kind of stopped that chain now where if I’m having a flare up, it’s usually just a genuine flare up. P13, 25yo However, not all participants felt a focus on the mind–body connection aided wellbeing, or at least required sensitive handling. The need for nuance related to understanding the mind-body connection was particularly evident in the context of pain, with participants cautioning against “toxic positivity”. … as endometriosis sufferers we have been told, “if you have a more positive mindset, you wouldn’t be so sick” or “it’s the way you’re thinking that is causing your disease” and all that sort of stuff. It [the mind-body connection] is a very sensitive topic to introduce to people with endometriosis… P6, 43yo Accordingly, these participants responded well to facilitators who acknowledged the years of invalidation, trauma, poor mental health, infertility and debilitating symptoms that they had endured, with empathy, particularly when applying CBT techniques. I can see how at some point it felt sort of undermining that you know somebody is telling you that you can turn your pain off … *the facilitator said multiple times … “I’m not underestimating your pain, and I’m not saying you’re not in pain, it’s just the way that you are going to react to it”, which is really helpful, that, you know having a professional who was still empathising with you and still understanding that you are in pain and that you know, they were there to help you. I think it was just like really quite refreshing for all of us, like having somebody that was on our side. P13, 25yo Participants also felt that CBT techniques could be used to calm the mind, relax the body and relieve persistent pain in everyday life. The particular techniques thought to be helpful were challenging thoughts, diaphragmatic breathing and progressive muscle relaxation. … these last two days I’ve had really bad pains and I feel like I can’t even get up to do the washing or I can’t even get out of bed … if I do the deep breathing and I just tell myself, “just do one task today”, and then I can accomplish something. P2, 24yo Although some participants used anchors other than the breath (e.g. sensory tools), mindfulness and relaxation techniques were described as a way to build self-awareness and self-discovery that could be incorporated into their daily routine (e.g. work, bedtime), with noticeable benefits. I loved the relaxation aspect, especially at night-time when I am trying to fall asleep, and I just can’t. I just say, “okay, well let’s try and do some relaxation” and by doing that I often find that I drift off. So, that has been helpful. P4, 25yo Participants also reported deeper self-exploration into prior experiences and their emotional responses to these experiences during the intervention. In particular, the expressive writing task enabled participants to revisit “impactful”, “quite upsetting”, “triggering” and “difficult” past experiences. Participants reported uncovering aspects of themselves they had never considered or addressed before. I think it’s just because I did a situation [in the expressive writing task] that was quite upsetting … like I knew it was a difficult situation for me and that’s why I chose to write about it, but I guess it really brought home how impactful it was for me and it’s not something that I had addressed. P7, 22yo Discussions about the expressive writing task led some participants to comment that they wanted further exploration of the emotional (rather than cognitive) aspects of endometriosis. Participants described noticing strong emotions, such as “deep senses of shame”, which required additional time, space and “counselling” to understand. I felt like maybe we missed a bit of an opportunity to explore something … about shame and some were talking about their writing … and really deep senses of shame, that I have felt, that you’re not coping, that you’re not succeeding in life or whatever it was. I think that it could have been explored a bit more. Although some participants noted the need for additional time to engage in emotional processing, others felt the existing time commitment was challenging, with difficulty completing homework, and staying engaged and making time for 8 weeks of content. However, it was also recognised that taking time to “work on myself” was important. Participants noted that engagement in the CBT intervention was important for self-development and strengthening relationships with significant others. Participants reported better communication with family and friends about endometriosis and started to prioritise time for themselves (e.g. taking time off work, making personal goals). In doing so, they described being able to “recharge”, “take care of myself”, and “let myself rest”, which before the intervention, was not regularly practiced. Theme 4 – reframing and regaining “control” of endometriosis, and living well Improved self-awareness of physiological, cognitive, emotional and behavioural responses, and personal and environmental triggers, enabled participants to notice, challenge and/or modify automatic thoughts about endometriosis, which often led to the reframing of longstanding assumptions and narratives. Participants described how the intervention helped them remember the strength and resilience they had demonstrated in the past and provided coping strategies to deal with their symptoms in the present. Several discussed using coping statements as an internal “pep talk” to reframe negative thought patterns and remind themselves that they are “strong” and “you’ll be okay”. An example frequently referred to was “breathe, and just do it”. Such statements were placed around participant households (e.g. on noticeboards, on the front door) as a visual reminder of coping resources and that symptoms were impermanent. … as *the facilitator says, “this hasn’t broken you before and you know, like you have gotten through it time and time again and you will get through it again” … it reminded me a bit that it has never broken me and therefore, like I can do the things that I love to do … like work is actually kind of helpful in when I do have a flare up because I tend to forget about it if I’m working. P13, 25yo By reframing previous assumptions around persistent pain, participants described being able to (re)engage more fully in previously enjoyed activities, employment, and everyday life. Participants described the change in perspective as, “I try not let it rule my life” and “I feel more free from endometriosis.” Understanding and learning about endometriosis and PPP facilitated a change in how their health was perceived. A common endometriosis narrative included its “rule” over a woman’s life, its chronic, incurable nature with minimal support. The CBT intervention provided knowledge about persistent pain, time to reflect on “the true impact of endometriosis”, techniques to feel “prepared”, and internal resources to manage symptoms, in turn, diminishing fear and anxiety. As a result, several participants discussed feeling more in control of endometriosis, and their symptoms. I have seen a big difference in the way that I perceive myself when I do get some pain or when I do get nausea or when I’m really fatigued – I can process it better. P4, 25yo Not only did participants feel more in control of their endometriosis symptoms, but also the skills taught during the CBT intervention extended to situations at work, symptoms of generalised stress and anxiety, and activities of daily living, including getting out of bed and engaging in physical activity. In doing so, broad assumptions about life shifted, where the belief of being “sick forever” was challenged, and participants described considering a meaningful life with, and even despite, endometriosis. I feel more prepared for it [persistent pain] … Before I had *the facilitator, it kind of felt like a prison sentence, like a life sentence when I got diagnosed. It felt like I was going to be sick forever and I’m just going to be sentenced to every five years a lap and an IUD… I am just going to have a different life to my friends who are pain free … But, I never really thought of living well … I think it [the CBT intervention] has been invaluable and I’m really happy that I got to do it. P1, 19yo Participants looked to their future with hope, including building goals around the skills developed or returning to previously enjoyed activities. Overall, the CBT intervention provided the opportunity to heal, feel empowered, and to engage in life more fully, with incremental change shifting a vicious cycle and instead creating a virtuous cycle of greater health and wellbeing: The disease and all the treatments and misdiagnosis, compounds and creates ill-health and mental health, and so this is just compounding in the other way … it’s all these things adding positive experiences around this disease, compounds that in the other direction … P6, 43yo

Participants’ lived experience of the CBT intervention provided novel perspectives on the role of psychological support throughout the disease course. Specifically, diagnosis and medical procedures were particular pressure points for psychological health, and the provision of psychological treatment to support people with endometriosis is needed, especially during these times. CBT for endometriosis was perceived as valuable in supporting psychological wellbeing, learning to cope with symptoms including persistent pain, understanding the mind-body connection and challenging longstanding assumptions about symptoms and life functioning. The benefits of CBT were felt to encompass building connection and a life worth living. The psychological impact of the endometriosis journey was profound, with participants describing symptoms of depression, anxiety, stress, and even a loss of trust in themselves and others. Diagnosis and surgical procedures for endometriosis were a pivotal moment, and in coming to terms with the chronicity of endometriosis, participants reflected on the need for psychological support to navigate this period. Previous research has shown that fear and uncertainty are common in the post-operative period, often due to a lack of information about the recovery and surgical procedures and how to live with and manage the disease more generally (Culley et al., Citation2013; Márki et al., Citation2022). Our findings illustrate how unresponsive caregiving and misinformation during the post-operative period can contribute to psychological distress, and compound years of invalidation. Importantly, diagnosis can elicit a range of strong emotions regardless of the diagnostic method used (Ellis et al., Citation2022), and thus, adequate psychological support during diagnosis of endometriosis is needed. Unfortunately, cost was a significant barrier to accessing such psychological support. In Australia, subsidies often only cover 50% of the total cost (Armour et al., Citation2022), which can be up to $AUD267 or more per appointment with a Clinical Psychologist (Aps, Citation2021), with regular access to psychological treatment unattainable for most. Due to such barriers, self-directed CBT programs for endometriosis may be an option to improve accessibility (Breton et al., Citation2025), however, support pathways to increase therapy engagement and intensity (i.e. individual psychotherapy) would need to be considered in the case of deterioration. Other mental health professionals (e.g. mental health nurses, occupational therapists) may also be trained to deliver CBT for endometriosis programs, however, it is unclear if this is a cost effective solution due to the out-of-pocket costs associated with receiving allied health support for endometriosis (Malik et al., Citation2022). Whilst the cost-effectiveness of group- and internet-based CBT has not previously been evaluated in people with endometriosis (Mikocka-Walus et al., Citation2021), our findings provide preliminary evidence to suggest that this mode of delivery is an acceptable, appropriate and accessible option for people with endometriosis. Our findings highlight that group-based CBT also has the benefit of promoting connection among people with endometriosis, creating strength and social identity in community. Many participants reported coming to the intervention with a lack of meaningful connection, consistent with research showing social isolation is common among people with endometriosis (Culley et al., Citation2013). Such isolation is likely maintained by miscommunication, a lack of knowledge about endometriosis, and subsequent frustration, between those diagnosed and their healthcare providers, family, and friends (Mellado et al., Citation2016). Our participants often felt isolated and unheard by healthcare providers, friends and family, particularly in the context of dismissive and invalidating experiences, and subsequently felt unable to voice their concerns. However, engaging in group-based CBT and sharing their stories opened a new world of like-minded people. As demonstrated by previous group-based health interventions (Haslam et al., Citation2019), improving people’s sense of connectedness, through social identification with other diagnosed people may improve mental health and reduce loneliness. Importantly, discussing the varied nature of endometriosis, including its course, symptoms and treatment, reassured participants to advocate for their personal treatment preferences and needs. The value of connecting with others diagnosed has also been reflected in the use of online support groups by people with endometriosis, which afford connection, reassurance from others, increased knowledge and improved coping (Shoebotham & Coulson, Citation2016). However, concerns around confidentiality, accuracy of information and negative reactions to others experiences in online support groups demonstrates an added benefit of health professional involvement to moderate group processes. Indeed, effective utilisation of group processes can enhance treatment satisfaction and provide practical, conservative pain management (Thorn & Kuhajda, Citation2006). Thus, group-based interventions may offer advantages over individual treatment for people with endometriosis. Participants also shared insight into specific CBT processes that were helpful. Developing an awareness of “triggers” (that is, precipitating events, thoughts, emotions and behaviours of various symptoms) and challenging assumptions about endometriosis were reported as key techniques of CBT that worked to promote cognitive change and perceived control. Psychoeducation about endometriosis and persistent pain (e.g. via visual tools and gate control theory of pain) increased awareness of physiological, cognitive, emotional, and behavioural responses, and enabled participants to challenge negative thoughts and beliefs. Furthermore, the identification and challenging of pain-related cognitions, such as pain catastrophising, fostered control over symptom flare-ups, particularly of persistent pain. Given the prognostic role of pain catastrophising in treatment outcomes for endometriosis (Allaire et al., Citation2018), and that various persistent pain symptoms can affect up to 86% of individuals with endometriosis (Armour et al., Citation2020), providing psychoeducation about persistent pain seems to be an integral part of CBT for endometriosis. Beyond this, creating a sense of control over persistent pain extended to personal health and life more broadly, and is consistent with previous findings of improved sense of control at 12 months and five years following a mindfulness-based psychological intervention for endometriosis (Hansen et al., Citation2017). Mindfulness and relaxation techniques in the current study were also described to provide space for reflecting on the mind and listening to the body, and a vehicle for building self-awareness. A lack of body familiarity, or dissociation/disconnection, has been suggested to arise when individuals living with endometriosis distance themselves from their body to cope with the disease and persistent pain (Melis et al., Citation2015). Slowing down and noticing the benefits of mindfulness and relaxation techniques, such as diaphragmatic breathing and progressive muscle relaxation, may be a pathway to improved body familiarity and (re)connection, by encouraging self-awareness and self-discovery. Body familiarity is closely linked to emotional wellbeing in this population (L. Van Niekerk et al., Citation2022), and our findings highlight the usefulness of these techniques in CBT to enhance mind-body connection and symptom outcomes for individuals with endometriosis. In addition, a compassion-focused approach to addressing bodily shame and self-criticism may be an important adjunct to group CBT to improve health-related QoL (L. M. Van Niekerk et al., Citation2023). Finally, several aspects of facilitation were identified by participants as being integral to their initial and ongoing engagement in the CBT intervention. Facilitators had to strike a balance between acknowledging the persistent pain experience, whilst also supporting participants to identify factors that might improve their pain management. This was particularly pertinent when exploring sensitive topics, such as the connection between persistent pain and the brain (as in the first session when providing psychoeducation about the Gate Control Theory of pain), where previous experiences of being told “all this is in your head” added to initial apprehension toward CBT and the mind-body connection. Facilitators also had to balance the needs of individual participants with those of the group, with enough space to explore emotional aspects of individual experiences, whilst also maintaining the established ground rules and a sense of safety within the group. As such, facilitation required an approach that was empathic to needs and values, invited choice, and was trustworthy in the delivery of care – all of which are aspects of both trauma-informed care and client-centred practice (Geukens et al., Citation2018; Kezelman & Stavropoulos, Citation2012). Given the pervasiveness of invalidating treatment experiences, and the potential for trauma and mental health disorders in this population (Koller et al., Citation2025), it is essential that psychologists possess the competence to understand and explain psychological, biological, interpersonal and cultural dynamics of endometriosis (Culley et al., Citation2013). Additionally, psychologists working with trauma should routinely screen for persistent pelvic pain to identify patients who may benefit from a trauma-informed psychological pain intervention (Yamin et al., Citation2024). In all, it is imperative that psychologists are aware of how to manage comorbid issues, including persistent pain, trauma and symptoms of anxiety and depression, and to engage in both pain- and trauma-informed practice to support the safety of group-based CBT for endometriosis.

The current study may have missed valuable information regarding the lived experience of CBT from those who withdrew or did not respond. Including optional, qualitative questions during the withdrawal process may help elucidate these unique perspectives. Further, our findings may have limited transferability, as our sample was well-educated, with the majority having achieved a bachelor’s degree (42.9%); we focused on the Australian context, which may limit the transferability of our findings to the wider, global population with endometriosis. Further to this, COVID-19 restrictions may have aided engagement for some participants (e.g. they did not have to travel and were mostly at home), and further exploration of CBT for endometriosis beyond COVID-19 restrictions is warranted. Clinical implications Our findings have important implications for clinical practice in the management of endometriosis. Clinicians providing a diagnosis of endometriosis, or working with those recently diagnosed, should recognise that this period is personally significant for individuals receiving care, and provide pathways to ensure adequate psychological support, including information about surgery, recovery and living well with endometriosis. Group and online CBT appears to be acceptable for people with endometriosis, consistent with adaptations for persistent pain and mental health disorders more generally (Cuijpers et al., Citation2019; Gandy et al., Citation2022). Indeed, the positive group experiences reported herein support the use of group-based CBT, providing additional connection benefits for this isolated population. CBT provides individuals with a pathway to understanding psychological precipitants of persistent pain flare-ups and unhelpful assumptions about endometriosis, which alongside cognitive, behavioural and mindfulness strategies, demonstrate benefits for managing symptoms and engaging in life. Given that mindfulness has not traditionally been part of CBT, the inclusion of mindfulness in CBT for endometriosis can be viewed as a “third wave” process of change that works to promote self-awareness and self-discovery (Hayes & Hofmann, Citation2021). Systematic quantitative evidence supports the effectiveness of CBT together with mindfulness techniques for endometriosis, showing improvements in anxiety, depression and QoL (Donatti et al., Citation2022; L. Van Niekerk et al., Citation2019). CBT that incorporates mindfulness practice should be considered for people with endometriosis. Finally, for clinicians working with this population, our findings demonstrate the importance of pain and trauma-informed care, client-centred practice and a clear biopsychosocial formulation to support the often complex physical and mental health needs of this population. In addition, therapeutic aspects of third-wave CBT approaches may be useful in managing sensitive topics, whilst also being oriented to change (Linehan, Citation2014). As such, clinicians require unique competency-based training to effectively deliver group CBT for endometriosis. Integrating core competencies of the “future pain clinician” into psychology training programs may therefore improve the delivery of pain interventions for this population (Linton et al., Citation2024).

The lived experience of participants in the current qualitative study suggests that people with endometriosis and PPP experience significant unmet psychological needs, especially related to key events such as diagnosis. It appears that CBT can support people with endometriosis and PPP to live well. Participants identified several helpful aspects of group-based CBT for endometriosis, including sharing of their personal stories, learning about the science of persistent pain, as well as their physiological, cognitive, emotional, and behavioural responses to the distress associated with living with endometriosis, challenging longstanding assumptions about endometriosis and learning practical behavioural strategies to cope. In sharing with others and learning these practical strategies, participants were able to better cope, and experienced newfound social connection, self-awareness, and functionality in everyday life. Group-based, online CBT for endometriosis was seen as a valuable treatment, offering an accessible and long-term option to support quality of life. The inclusion of CBT in the management of endometriosis and PPP is therefore encouraged. Disclosure statement No potential conflict of interest was reported by the author(s). Data availability statement Research data are not shared. The data are not publicly available due to privacy restrictions. Additional information Funding Notes on contributors Charlotte Dowding Charlotte Dowding is a clinical psychology registrar who is currently practicing in Orange, NSW. She recently completed her Doctor of Psychology (Clinical) at Deakin University with a thesis focused on understanding the psychological aspects of endometriosis. Antonina Mikocka-Walus Dr Antonina Mikocka-Walus is Professor in Health Psychology at Deakin University in Melbourne. She is a registered psychologist who completed her doctoral degree in Gastro-Psychology at the University of Adelaide. She has published over 200 peer-reviewed articles and is among the world’s top 2% most cited researchers. Dr Mikocka-Walus’ research programs have been on implementing supportive care for chronic gut conditions and endometriosis. David Skvarc David Skvarc (he/him) is a senior lecturer and course director of fourth-year psychology at Deakin University. He predominantly works as a biostatistician supporting research in behavioural medicine and novel psychotropic therapies. Melissa O’Shea Melissa O’Shea (she/her) is an Associate Professor of Clinical Psychology and leads postgraduate clinical psychology training at Deakin University. Her research interests include the integration of complementary and Indigenous approaches within Western psychological practice including yoga and nature-based therapies. In addition, she is engaged in research that supports effective training in clinical psychology. Lisa Olive Lisa Olive (she/her) is Associate Professor in Psychology, NHMRC Early Career Fellow and a clinical psychologist who specialises in mental health and behavioural medicine. Their primary research expertise includes mental health and wellbeing in elite and professional sportspeople, the relationship between lifestyle factors and the high-prevalent mental disorders (mood and anxiety) in young people, and exploring the links between mental and physical health. Subhadra Evans Subhadra Evans is Associate Professor in The School of Psychology, Deakin University, Australia. She leads the Mind-Body Research in Health (MiRth) Laboratory. Her research focuses on psychological and mind-body interventions to improve the quality of life of people with chronic health conditions. She has extensive experience undertaking clinical trials related to psychological therapy, mindfulness, yoga and hypnosis, using qualitative and quantitative methods, with over 130 peer-reviewed publications.

- Agarwal, S. K., Antunez-Flores, O., Foster, W. G., Hermes, A., Golshan, S., Soliman, A. M., Arnold, A., & Luna, R. (2021). Real-world characteristics of women with endometriosis-related pain entering a multidisciplinary endometriosis program. BMC Women’s Health, 21(1), 19. https://doi.org/10.1186/s12905-020-01139-7 - Allaire, C., Williams, C., Bodmer-Roy, S., Zhu, S., Arion, K., Ambacher, K., Wu, J., Yosef, A., Wong, F., Noga, H., Britnell, S., Yager, H., Bedaiwy, M. A., Albert, A. Y., Lisonkova, S., & Yong, P. J. (2018). Chronic pelvic pain in an interdisciplinary setting: 1-year prospective cohort. American Journal of Obstetrics and Gynecology, 218(1),114.e111–114.e112. https://doi.org/10.1016/j.ajog.2017.10.002 - Aps, A. P. S. (2021). APS national schedule of recommended fees (not including GST) and item numbers* for psychological services ( The Recommended Fee Schedule in place from 1 July 2021 until 30 June 2022). - Armour, M., Avery, J., Leonardi, M., Van Niekerk, L., Druitt, M. L., Parker, M. A., Girling, J. E., McKinnon, B., Mikocka-Walus, A., Ng, C. H. M., O’Hara, R., Ciccia, D., Stanley, K., & Evans, S. (2022). Lessons from implementing the Australian national action plan for endometriosis. Reprod Fertil, 3(3), C29–c39. https://doi.org/10.1530/raf-22-0003 - Armour, M., Sinclair, J., Ng, C. H., Hyman, M. S., Lawson, K., Smith, C. A., & Abbott, J. (2020). Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: An Australian survey. Scientific Reports, 10(1), 16253. https://doi.org/10.1038/s41598-020-73389-2 - Australian Government Department of Health. (2018). National action plan for endometriosis. - Boersen, Z., de Kok, L., van der Zanden, M., Braat, D., Oosterman, J., & Nap, A. (2021). Patients’ perspective on cognitive behavioural therapy after surgical treatment of endometriosis: A qualitative study. Reproductive Biomedicine Online, 42(4), 819–825. https://doi.org/10.1016/j.rbmo.2021.01.010 - Braun, V. A., & Clarke, V. (2022). Thematic analysis: A practical guide [ Bibliographies]. SAGE Publications Ltd. https://ezproxy.deakin.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=cat00097a&AN=deakin.b4729310&site=eds-live&scope=site(open in a new window) - Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa - Braun, V., & Clarke, V. (2013). Successful qualitative research: A practical guide for beginners [ Bibliographies]. SAGE. https://ezproxy.deakin.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=cat00097a&AN=deakin.b2906305&site=eds-live&scope=site(open in a new window) - Braun, V., & Clarke, V. (2021a). Can I use TA? Should I use TA? Should I not use TA? Comparing reflexive thematic analysis and other pattern-based qualitative analytic approaches. Counselling and Psychotherapy Research, 21(1), 37–47. https://doi.org/10.1002/capr.12360 - Braun, V., & Clarke, V. (2021b). One size fits all? What counts as quality practice in (reflexive) thematic analysis? [ Article]. Qualitative Research in Psychology, 18(3), 328–352. https://doi.org/10.1080/14780887.2020.1769238 - Breton, Z., Stern, E., Pinault, M., Lhuillery, D., Petit, E., Panel, P., & Alexaline, M. (2025). A digital program for daily life management with endometriosis: Pilot cohort study on symptoms and quality of life among participants. JMIR Formative Research, 9, e58262. https://doi.org/10.2196/58262 - Bynum, W., & Varpio, L. (2018). When I say … hermeneutic phenomenology. Medical Education, 52(3), 252–253. https://doi.org/10.1111/medu.13414 - Cox, H., Henderson, L., Andersen, N., Cagliarini, G., & Ski, C. (2003). Focus group study of endometriosis: Struggle, loss and the medical merry-go-round. International Journal of Nursing Practice, 9(1), 2–9. https://doi.org/10.1046/j.1440-172X.2003.00396.x - Cuijpers, P., Noma, H., Karyotaki, E., Cipriani, A., & Furukawa, T. A. (2019). Effectiveness and acceptability of cognitive behavior therapy delivery formats in adults with depression: A network meta-analysis. JAMA Psychiatry, 76(7), 700–707. https://doi.org/10.1001/jamapsychiatry.2019.0268 - Culley, L., Law, C., Hudson, N., Denny, E., Mitchell, H., Baumgarten, M., & Raine-Fenning, N. (2013). The social and psychological impact of endometriosis on women’s lives: A critical narrative review. Human Reproduction Update, 19(6), 625–639. https://doi.org/10.1093/humupd/dmt027 - Dart, J., & Davies, R. (2003). A dialogical, story-based evaluation tool: The most significant change technique. American Journal of Evaluation, 24(2), 137–155. https://doi.org/10.1177/109821400302400202 - De Graaff, A. A., D’Hooghe, T. M., Dunselman, G. A. J., Dirksen, C. D., Hummelshoj, L., Consortium, W. E., Simoens, S., Bokor, A., Brandes, I., Brodszky, V., Canis, M., Colombo, G. L., DeLeire, T., Falcone, T., Graham, B., Halis, G., Horne, A. W., Kanj, O., … Vigano, P. (2013). The significant effect of endometriosis on physical, mental and social wellbeing: Results from an international cross-sectional survey. Human Reproduction, 28(10), 2677–2685. https://doi.org/10.1093/humrep/det284 - Denny, E., Weckesser, A., Jones, G., Bibila, S., Daniels, J., Bhattacharya, S., & The, P. R. E. E. T. (2018). Women’s experiences of medical treatment for endometriosis and its impact on PRE-EMPT trial participation: A qualitative study. Pilot and Feasibility Studies, 4(1), 168. https://doi.org/10.1186/s40814-018-0358-5 - Donatti, L., Malvezzi, H., Azevedo, B. C. D., Baracat, E. C., & Podgaec, S. (2022). Cognitive behavioral therapy in endometriosis, psychological based intervention: A systematic review. Revista Brasileira de Ginecologia e Obstetrícia, 44(3), 295–303. https://doi.org/10.1055/s-0042-1742406 - Ehde, D. M., Dillworth, T. M., & Turner, J. A. (2014). Cognitive-behavioral therapy for individuals with chronic pain: Efficacy, innovations, and directions for research. The American Psychologist, 69(2), 153–166. https://doi.org/10.1037/a0035747 - Ellis, K., Munro, D., & Wood, R. (2022). The experiences of endometriosis patients with diagnosis and treatment in New Zealand [original research]. Frontiers in Global Women’s Health, 3. https://doi.org/10.3389/fgwh.2022.991045 - Evans, S., Fernandez, S., Olive, L., Payne, L. A., & Mikocka-Walus, A. (2019). Psychological and mind-body interventions for endometriosis: A systematic review. Journal of Psychosomatic Research, 124, 109756. https://doi.org/10.1016/j.jpsychores.2019.109756 - Evans, S., Villegas, V., Dowding, C., Druitt, M., O’Hara, R., & Mikocka-Walus, A. (2021). Treatment use and satisfaction in Australian women with endometriosis: A mixed-methods study. Internal Medicine Journal, 52(12), 2096–2106. https://doi.org/10.1111/imj.15494 - Gandy, M., Pang, S. T. Y., Scott, A. J., Heriseanu, A. I., Bisby, M. A., Dudeney, J., Karin, E., Titov, N., & Dear, B. F. (2022). Internet-delivered cognitive and behavioural based interventions for adults with chronic pain: A systematic review and meta-analysis of randomized controlled trials. PAIN, 163(10), e1041–e1053. https://doi.org/10.1097/j.pain.0000000000002606 - Gao, M., Koupil, I., Sjöqvist, H., Karlsson, H., Lalitkumar, S., Dalman, C., & Kosidou, K. (2020). Psychiatric comorbidity among women with endometriosis: Nationwide cohort study in Sweden. American Journal of Obstetrics & Gynecology, 223(3).e415.411–.e415.416. https://doi.org/10.1016/j.ajog.2020.02.033 - Geukens, E. I., Apers, S., Meuleman, C., D’Hooghe, T. M., & Dancet, E. A. F. (2018). Patient-centeredness and endometriosis: Definition, measurement, and current status. Best Practice & Research Clinical Obstetrics & Gynaecology, 50, 11–17. https://doi.org/10.1016/j.bpobgyn.2018.01.009 - Hansen, K. E., Kesmodel, U. S., Kold, M., & Forman, A. (2017). Long-term effects of mindfulness-based psychological intervention for coping with pain in endometriosis: A six-year follow-up on a pilot study. Nordic Psychology, 69(2), 100–109. https://doi.org/10.1080/19012276.2016.1181562 - Haslam, C., Cruwys, T., Chang, M. X. L., Bentley, S. V., Haslam, S. A., Dingle, G. A., & Jetten, J. (2019). GROUPS 4 HEALTH reduces loneliness and social anxiety in adults with psychological distress: Findings from a randomized controlled trial. Journal of Consulting and Clinical Psychology, 87(9), 787–801. https://doi.org/10.1037/ccp0000427 - Hayes, S. C., & Hofmann, S. G. (2021). “Third-wave” cognitive and behavioral therapies and the emergence of a process-based approach to intervention in psychiatry. World Psychiatry, 20(3), 363–375. https://doi.org/10.1002/wps.20884 - Horne, A. W., Saunders, P. T. K., Abokhrais, I. M., & Hogg, L. (2017). Top ten endometriosis research priorities in the UK and Ireland. The Lancet, 389(10085), 2191–2192. https://doi.org/10.1016/s0140-6736(17)31344-2 - Johnson, N. P., Hummelshoj, L., Adamson, G. D., Keckstein, J., Taylor, H. S., Abrao, M. S., Bush, D., Kiesel, L., Tamimi, R., Sharpe-Timms, K. L., Rombauts, L., & Giudice, L. C. (2017). World endometriosis society consensus on the classification of endometriosis. Human Reproduction, 32(2), 315–324. https://doi.org/10.1093/humrep/dew293 - Kezelman, C., & Stavropoulos, P. (2012). Practice guidelines for treatment of complex trauma and Trauma Informed Care and Service Delivery. Blue Knot Foundation. - Koller, D., Løkhammer, S., Goroshchuk, O., Denner, V., Stiltner, B., Mitjans, M., He, J., Taylor, H. S., Lawn, R. B., Koenen, K. C., & Polimanti, R. (2025). Observational and genetic analyses of traumatic experiences and endometriosis. JAMA Psychiatry, 82(4), 386–394. https://doi.org/10.1001/jamapsychiatry.2024.4694 - Lazard, L., & McAvoy, J. (2020). Doing reflexivity in psychological research: What’s the point? What’s the practice? [article]. Qualitative Research in Psychology, 17(2), 159–177. https://doi.org/10.1080/14780887.2017.1400144 - Linehan, M. (2014). DBT skills training manual [Bibliographies]. The Guilford Press. https://ezproxy.deakin.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=cat00097a&AN=deakin.b3090044&site=eds-live&scope=site(open in a new window)http://ezproxy.deakin.edu.au/login?url=http://ebookcentral.proquest.com/lib/deakin/detail.action?docID=1760720(open in a new window) - Linton, S. J., O’Sullivan, P. B., Zetterberg, H. E., & Vlaeyen, J. W. S. (2024). The “future” pain clinician: Competencies needed to provide psychologically informed care. Scandinavian Journal of Pain, 24(1). https://doi.org/10.1515/sjpain-2024-0017 - Malik, A., Sinclair, J., Ng, C. H. M., Smith, C. A., Abbott, J., & Armour, M. (2022). Allied health and complementary therapy usage in Australian women with chronic pelvic pain: A cross-sectional study. BMC Women’s Health, 22(1), 37. https://doi.org/10.1186/s12905-022-01618-z - Márki, G., Vásárhelyi, D., Rigó, A., Kaló, Z., Ács, N., & Bokor, A. (2022). Challenges of and possible solutions for living with endometriosis: A qualitative study. BMC Women’s Health, 22(1), 20. https://doi.org/10.1186/s12905-022-01603-6 - Melis, I., Litta, P., Nappi, L., Agus, M., Melis, G. B., & Angioni, S. (2015). Sexual function in women with deep endometriosis: Correlation with quality of life, intensity of pain, depression, anxiety, and body image. International Journal of Sexual Health, 27(2), 175–185. https://doi.org/10.1080/19317611.2014.952394 - Mellado, B. H., Falcone, A. C., Poli-Neto, O. B., Rosa, E. S. J. C., Nogueira, A. A., & Candido-Dos-Reis, F. J. (2016). Social isolation in women with endometriosis and chronic pelvic pain. International Journal of Gynaecology and Obstetrics, 133(2), 199–201. https://doi.org/10.1016/j.ijgo.2015.08.024 - Mikocka-Walus, A., Druitt, M., O’Shea, M., Skvarc, D., Watts, J. J., Esterman, A., Tsaltas, J., Knowles, S., Harris, J., Dowding, C., Parigi, E., & Evans, S. (2021). Yoga, cognitive-behavioural therapy versus education to improve quality of life and reduce healthcare costs in people with endometriosis: A randomised controlled trial. British Medical Journal Open, 11(8), e046603. https://doi.org/10.1136/bmjopen-2020-046603 - Nadin, S., & Cassell, C. (2006). The use of a research diary as a tool for reflexive practice: Some reflections from management research. Qualitative Research in Accounting and Management, 3(3), 208–217. https://doi.org/10.1108/11766090610705407 - Neubauer, B. E., Witkop, C. T., & Varpio, L. (2019). How phenomenology can help us learn from the experiences of others. Perspectives on Medical Education, 8(2), 90–97. https://doi.org/10.1007/s40037-019-0509-2 - Rowlands, I. J., Abbott, J. A., Montgomery, G. W., Hockey, R., Rogers, P., & Mishra, G. D. (2020). Prevalence and incidence of endometriosis in Australian women: A data linkage cohort study. Bjog, 128(4), 657–665. https://doi.org/10.1111/1471-0528.16447 - Shoebotham, A., & Coulson, N. S. (2016). Therapeutic affordances of online support group use in women with endometriosis. Journal of Medical Internet Research, 18(5), e109. https://doi.org/10.2196/jmir.5548 - Thorn, B. E. (2004). Cognitive therapy for chronic pain: A step-by-step guide. The Guilford Press. - Thorn, B. E. (2017). Cognitive therapy for chronic pain: A step-by-step guide. Guilford Publications. - Thorn, B. E., & Kuhajda, M. C. (2006). Group cognitive therapy for chronic pain [article]. Journal of Clinical Psychology, 62(11), 1355–1366. https://doi.org/10.1002/jclp.20315 - Van Niekerk, L. M., Dell, B., Johnstone, L., Matthewson, M., & Quinn, M. (2023). Examining the associations between self and body compassion and health related quality of life in people diagnosed with endometriosis. Journal of Psychosomatic Research, 167, 111202. https://doi.org/10.1016/j.jpsychores.2023.111202 - Van Niekerk, L., Steains, E., & Matthewson, M. (2022). Correlates of health-related quality of life: The influence of endometriosis, body image and psychological wellbeing. Journal of Psychosomatic Research, 161, 110993. https://doi.org/10.1016/j.jpsychores.2022.110993 - Van Niekerk, L., Weaver-Pirie, B., & Matthewson, M. (2019). Psychological interventions for endometriosis-related symptoms: A systematic review with narrative data synthesis. Archives of Women’s Mental Health, 22(6), 723–735. https://doi.org/10.1007/s00737-019-00972-6 - Willig, C. A. (2013). Introducing qualitative research in psychology [bibliographies]. Open University Press. https://ezproxy.deakin.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=cat00097a&AN=deakin.b2899355&site=eds-live&scope=site(open in a new window)http://ezproxy.deakin.edu.au/login?url=http://ebookcentral.proquest.com/lib/deakin/detail.action?docID=1220260(open in a new window) - Windgassen, S., Moss-Morris, R., Goldsmith, K., & Chalder, T. (2019). Key mechanisms of cognitive behavioural therapy in irritable bowel syndrome: The importance of gastrointestinal related cognitions, behaviours and general anxiety. Journal of Psychosomatic Research, 118, 73–82. https://doi.org/10.1016/j.jpsychores.2018.11.013 - Yamin, J. B., Edwards, R. R., & Edwards, R. R. (2024). Beyond pain catastrophizing: Rationale and recommendations for targeting trauma in the assessment and treatment of chronic pain. Expert Review of Neurotherapeutics, 24(3), 231–234. https://doi.org/10.1080/14737175.2024.2311275 - Young, K., Fisher, J., & Kirkman, M. (2015). Women’s experiences of endometriosis: A systematic review and synthesis of qualitative research. Journal of Family Planning and Reproductive Health Care, 41(3), 225–234. https://doi.org/10.1136/jfprhc-2013-100853