A mixed-methods investigation of coping, adaptation and health-related quality of life in individuals experiencing endometriosis

Objective The current mixed-methods study aimed to investigate how individuals experiencing endometriosis coped and adapted to their condition, and the extent to which coping predicted health-related quality of life (HRQoL) over time.

and measures We adopted a sequential, mixed-methods design incorporating a two-wave longitudinal survey and semi-structured interviews. In total, 408 participants diagnosed with endometriosis completed the enrolment survey, measuring demographics, clinical factors, and coping with 283 completing the follow-up survey assessing HRQoL a year later. Data was analysed through hierarchical regression analysis. Additionally, 30 semi-structured interviews were conducted and analysed using reflexive thematic analysis.

Quantitative data revealed that avoidant coping strategies and endometriosis-related information-seeking predicted reduced HRQoL, while trust in medical care was protective. Three themes were constructed from the qualitative data: disconnection from the body; balancing boundaries and self-care; and empowered adaptation. Integration of the datasets emphasised the importance of coping for HRQoL and wellbeing, revealing avoidance and positive adaptation as prominently employed coping strategies.

The results position coping as an important therapeutic target in endometriosis care, particularly through fostering empowerment and adaptation to support HRQoL.

Endometriosis is a chronic, incurable condition in which tissue similar to the lining of the womb, the endometrium, is found outside the uterus (Zondervan et al., Citation2020). Symptoms vary between individuals, however, common complaints include chronic pelvic pain, dyspareunia, and heavy menstrual bleeding (World Health Organization, Citation2023). One in ten women and individuals assigned female at birth experience endometriosis (World Health Organization, Citation2023). Endometriosis is associated with reduced quality of life (QoL) and a heightened risk of depression and anxiety compared to the general population (Wang et al., Citation2021). Prevalence of depression and anxiety in this population has been placed as high as 86.5 and 87.5%, respectively (Sepulcri & do Amaral, 2015). The severe and often debilitating symptoms experienced by many with the condition are thought to underlie adverse QoL outcomes. Pain (Rees et al., Citation2022), negative body image (Van Niekerk et al., Citation2022), diagnostic delays (Gallagher et al., Citation2018), and sub-fertility (Vitale et al., Citation2017) have all been linked to endometriosis-related QoL, suggesting that QoL in this population is determined by a complex interplay between several physiological, social and psychological factors. Such factors may be related to QoL directly, or indirectly through driving coping responses. Coping is thought to play a pivotal role in shaping endometriosis-related QoL and wellbeing outcomes. Zarbo et al. (Citation2018) described several coping strategies adopted by individuals experiencing endometriosis, including emotion suppression, pain catastrophising, seeking social support, and self-management. Emotional and avoidant coping styles predicted adverse mental health outcomes, whilst adaptive, rational coping styles were related to more positive mental health effects. Qualitative research has also considered the specific coping styles employed by individuals experiencing endometriosis. For example, Grogan et al. (Citation2018) observed coping strategies such as hiding endometriosis symptoms, rejecting painkillers, and self-pacing through avoiding social events and prioritising work commitments to be prominent within this population. The impact of these coping styles on wellbeing was complex. For instance, concealing symptoms allowed a sense of normality and often had a protective effect on the self-concept, however coping in this way also led to feelings of guilt and isolation, negatively impacting participants’ relationships. The authors stress the necessity for tailored support unique to each individual, which may in turn promote adaptation to enable individuals with endometriosis to live a fulfilling life. In other chronic health conditions, researchers have identified a link between disease acceptance and positive health-related quality of life (HRQoL) outcomes (HRQoL is a narrower term than QoL, used to describe the physical, psychological and social aspects of experiencing and managing an illness) in several chronic illnesses, such as chronic obstructive pulmonary disease (Jankowska-Polańska et al., Citation2016) and chronic heart failure (Obieglo et al., Citation2016). Disease acceptance is associated with improved adaptation and reduced emotional distress (Wysocki et al., Citation2023), highlighting the potential benefits of positive adaptation in chronic conditions such as endometriosis. Although existing research strongly indicates that coping impacts HRQoL and wellbeing in this population, notably missing from the literature is longitudinal work to ascertain the long-term predictive validity of coping strategies on endometriosis-related QoL outcomes. Additionally, there is limited exploration of the specific coping strategies employed by individuals with endometriosis from an experiential or mixed-methods perspective. Therefore, by adopting a mixed-methods approach for the first time, the current research aims to extend previous research by combining qualitative and quantitative insights relating to the way in which individuals with endometriosis cope with and adapt to their condition, over time. Specifically, the current study aims to (i) establish whether coping strategies predict HRQoL in endometriosis over the course of one year, and (ii) gain an in-depth understanding of the coping and adaptation processes adopted by individuals experiencing the condition. We hypothesised: H1: Coping strategies at Time 1 (i.e. enrolment to the study) will significantly predict HRQoL at Time 2 (i.e. 12-month follow-up). H2: Greater use of adaptive coping strategies (e.g. problem-focused coping, trust in medical care) at Time 1 will significantly predict better HRQoL outcomes at 12-month follow-up H3: Greater use of maladaptive coping strategies (e.g. depressive processing) at Time 1 will significantly predict poorer HRQoL outcomes at 12-month follow-up

Research design A mixed methods sequential design was adopted, incorporating in-depth, semi-structured interviews and a two-wave longitudinal survey. The two components of the current research were analysed separately before the findings were integrated. Ethical approval was obtained from the University’s ethics committee (ethics code: UEC21/40). Data collection occurred between April 2021 and June 2023. Longitudinal survey Participants Four hundred and eight participants were recruited for the Time 1 (T1) survey through convenience sampling. Participants were largely recruited from endometriosis support organisations and social media. Individuals over the age of 18, residing in the UK or Ireland, and who self-reported a medically confirmed diagnosis of endometriosis were eligible to participate. There were no additional exclusion criteria. Twelve months after the T1 survey, 283 participants completed the follow-up (T2) survey. Analyses revealed no significant differences between those who completed the follow-up survey and those who did not in demographic background, health status or coping (). At T1, participants were aged between 19 and 56 (M = 33.92; SD = 7.99). Participants had experienced endometriosis for approximately 15.5 years (SD = 8.44) and had been diagnosed for around 5.1 years (SD = 5.61). Further demographic and clinical details can be found in . Measures Demographic and clinical information At T1, participants provided demographic and clinical data, including ethnicity, educational attainment, employment status, household income, country of residence, whether they experienced co-morbid conditions, their history of endometriosis surgery, and the duration of their endometriosis symptoms and diagnosis. Coping Also at T1, participants completed the 45-item Essen Coping Questionnaire (Franke & Jagla, Citation2016), which measures 9 coping styles specific to experiencing ill-health/disease: (1) active problem-orientated coping; (2) distance and self-promotion; (3) information seeking and exchange of experiences; (4) trivialisation, wishful-thinking and defence; (5) depressive processing (i.e. negative self-reflection and rumination related to an individual’s condition); (6) willingness to accept help; (7) active search for social integration; (8) trust in medical care; (9) finding inner stability. Examples of questions include, ‘I actively look for information about my disease in books, magazines or the internet’, and ‘I exchange experiences in dealing with the condition with other patients’. Each item is ranked on a 5-point Likert scale (0: ‘Not at all’; 5: ‘Extremely’). Scores for each category of coping were derived by summing up the responses to the corresponding questions and dividing them by the number of questions to gain an average for each coping style. Distance and self-promotion, trivialisation wishful thinking and defence, and finding inner stability were discarded from analysis due to poor internal consistency. All other subscales had acceptable internal consistency (Cronbach’s α > 0.6). Health-related quality of life At T1 and T2, the 11-item Endometriosis Health Profile Questionnaire-5 (EHP-5; Jones et al., Citation2004) was used to measure endometriosis-specific HRQoL. Five of the six items are scored on a 5-point Likert scale (0 = ‘Never’, 1 = ‘Rarely’, 2 = ‘Sometimes’, 3 = ‘Often’, 4 = ‘Always’), whilst the remaining 6 items are scored on the same scale with the addition of a ‘Not Relevant’ option. Examples of the questions included in this questionnaire include ‘During the last 4 wk, how often because of your endometriosis have you found it difficult to walk because of the pain?’, and ‘During the last 4 wk, how often because of your endometriosis have you been unable to carry out duties at work because of the pain?’. A composite scale of overall HRQoL was formulated by summing total scores and expressing them as a percentage, with 0% representing the best possible HRQoL, and 100% representing the worst. Thus, scores represent the percentage of time each HRQoL domain was negatively affected over the prior four weeks. The EHP-5 demonstrated good reliability (α = 0.79). Procedure Participants were presented with an information sheet via Qualtrics detailing the aims and scope of the survey. At this point, participants were asked to indicate their consent to participate in the survey. They were then asked to confirm that they had received a medically confirmed diagnosis of endometriosis. Participants who answered ‘no’ to this question were directed to the end of the survey. Participants were then asked to provide their contact details so that interested participants could be invited to interview. Participants were debriefed following survey completion. One year later, participants were invited to complete a follow-up survey via Qualtrics, where they were again asked to give their consent to participate before completing the survey. Following survey completion, participants were again debriefed. The 12-month period between surveys was selected to allow for sufficient time to observe changes in HRQoL, while minimising the risk of attrition associated with longer follow-up intervals. Research has shown that quality of life in individuals with endometriosis can significantly change within a 6–12 month period post-intervention, supporting the relevance of this timeframe for assessing HRQoL outcomes (e.g. Comptour et al., Citation2019). Participants were not compensated for their participation in the longitudinal survey. Statistical analysis Following univariate analysis, a hierarchical multiple regression analysis was conducted to determine whether coping predicted HRQoL at T2, over and above demographic and clinical factors. Qualitative interviews Participants Thirty participants who had expressed an interest in participating in the interviews within the T1 survey attended online semi-structured interviews. A sampling matrix prioritising the recruitment of individuals with a range of ethnic backgrounds, ages, employment status’, household incomes, and educational attainment was used to ensure a diverse sample. Pseudonyms were used to preserve the anonymity of participants. Interviewees were aged between 20 and 55 years (M = 35.6). Participants had experienced symptoms of endometriosis for between 4 and 40 years (M = 14.83 years, SD= 9.18), and had been diagnosed for an average of 5 years (SD= 6.97). Additional demographic and clinical details relating to participants can be found in .

A topic guide incorporating open-ended questions and prompts was utilised for the semi-structured interviews. This guide was developed for a broader project on endometriosis-related perceptions (Moore et al., Citation2023). The interview topic guide was informed by the Illness Perceptions Questionnaire as a general framework to explore participants’ experiences and views related to endometriosis. It was expanded to include broader prompts on living with the condition and coping strategies. The guide was initially piloted with two individuals, and minor revisions were made to enhance clarity and ensure it effectively elicited relevant responses. Participants were asked general questions relating to their endometriosis experiences (e.g. When you think about your experiences of living with endometriosis, how would you say it has affected your life?) before several prompts were employed to elicit further information relating to their coping styles, perceptions, and social support. Prompts included ‘self-care’, ‘emotions towards endometriosis’, ‘strategies to cope’, and ‘control over endometriosis’. Procedure An information sheet was sent to potential participants and those interested provided written consent to be interviewed. Semi-structured interviews were conducted by telephone (n = 5) or online (n = 25), lasting an average of 62 min. Interviews were audio recorded. Recordings were deleted following transcription. Participants were debriefed following the interview and offered a £20 Amazon gift voucher as compensation for their time. Qualitative analysis Interviews were analysed using Braun and Clarke (Citation2021) reflexive thematic analysis (RTA). RTA emphasises the researcher’s active role in knowledge production (Braun & Clarke, Citation2019) whereby codes are understood to represent the researcher’s interpretations of patterns of meaning across the dataset. A reflexive journal was kept by the lead researcher throughout analysis to note thoughts and feelings relating to each interview. Transcripts were read and notes taken to aid familiarisation with the data, before the data was distilled into several codes based on the aims of the current study using NVivo v.12. Codes were grouped to construct potential themes, which were reviewed based on their relevance to the research aims. Potential themes were discussed amongst all researchers, before three themes were finalised. Integration of data Morgan’s (Citation2019) approach to integrating mixed-methods data was adopted to combine the qualitative and quantitative components. This approach determines the extent of convergence, complementarity, and divergence across the datasets. By considering these aspects during the integration process, Morgan’s (Citation2019) approach allows for a comprehensive understanding of the data and a holistic perspective of the research area.

Longitudinal survey Sample characteristics Participants employed several strategies to cope with the impact of endometriosis. As illustrated in , information seeking and exchanging of experiences was the most used coping strategy, followed by depressive processing, trust in medical care, and active problem-oriented coping. Participants were least likely to actively search for social integration, for example by meeting new acquaintances, going out with friends, and visiting others. Participants had a mean HRQoL score of 58.14 (SD = 22.57), indicating that on average, participants reported experiencing negative endometriosis-related impacts on HRQoL approximately 58% of the time over the prior four weeks (however, it is important to note that there are no established clinical cut-offs to determine severity). There was, however, variation in participant scores as signified by the standard deviation, perhaps reflecting the heterogeneous experiences of individuals experiencing endometriosis. As different quality of life instruments use different scales and scoring methods, it is difficult to compare these HRQoL findings with those of other chronic health conditions (). Univariate analysis Prior to conducting multivariate analysis, univariate analyses were performed to determine the relationships between each potential predictor and HRQoL, and to establish the factors to be included within the regression model. presents the correlation analysis between participant demographics, clinical factors, coping, and HRQoL. As shown in , several significant correlations were observed between predictor variables and HRQoL. Specifically, older age and higher income were both associated with better HRQoL, as indicated by negative correlations, r(281) = −0.189, p=.001 and r(278) = −0.250, p<.001, respectively. In contrast, greater use of depressive processing was associated with poorer HRQoL, r(271) = 0.453, p<.001), as was greater use of information seeking and exchange of experiences (r(271) = 0.249, p<.001. In contrast, greater use of action or problem-oriented coping and higher trust in medical care were both associated with better HRQoL, r(271) = −0.230, p<.001 and r(269)= −0.408, p<.001, respectively). However, diagnostic delay, surgical history, active search for social integration and willingness to accept help were not related to HRQoL in this sample. Therefore, these variables were dropped from further analysis. Additionally, a series of t-tests and ANOVAs suggested that educational attainment, employment status, and the presence of a co-morbid condition all had a significant effect on HRQoL and these variables were also included in the final regression model. Furthermore, as outlined in , most participants identified with White ethnic backgrounds (94.6%). Therefore, there was too little heterogeneity within the sample to establish whether ethnicity was associated with HRQoL, and this variable was dropped from further analysis. Hierarchical multiple regression analysis A hierarchical multiple regression analysis was next performed to ascertain the predictive value of coping, demographics and clinical factors as measured at T1, on HRQoL, measured at T2. Demographic factors (i.e. age, educational attainment, employment status, and household income) were entered in Step 1 of the multiple regression, followed by clinical factors (i.e. comorbidity) at Step 2. Finally, coping was entered in the final step. The full regression model including demographics, clinical factors, and coping significantly predicted HRQoL, F(9, 246) = 14.82, p<.001. As shown in , the regression model accounts for 35.2% of the variance in HRQoL scores (adjusted R2 = 0.328). As demonstrated by the change in R2 in step 3, coping explained an additional 20.2% of the variance in scores over and above demographic and clinical factors. Considering individual predictors, higher age was linked to more positive HRQoL outcomes (β = −0.303, p = .036), and this effect remained even with the addition of coping styles in the model. Among coping strategies, depressive processing, a coping style characterised by social withdrawal and rumination, was the strongest predictor of HRQoL outcomes, with higher depressive processing associated with poorer HRQoL outcomes (β = 7.941, p < .001). Trust in medical care, relating to confidence in medical professionals and treatment, was also a significant predictor (β = −6.182, p < .001), with greater trust associated with better HRQoL. Additionally, information seeking and exchange of experiences was associated with poorer HRQoL (β = 3.171, p = .037), whilst action, problem-oriented coping did not significantly predict HRQoL in this regression model (β = −2.576, p = .176). Qualitative analysis Three themes relevant to the research question were constructed through reflexive thematic analysis: (i) carrying on and disconnection from the body; (ii) balancing boundaries and holistic self-care; and (iii) empowered adaptation. provides an overview of each theme before they are considered in greater detail below. Theme 1: Carrying on and disconnection from the body Carrying on and dismissing endometriosis symptoms was a predominant coping mechanism amongst participants. Participants described continuing their usual routine and attempting to ignore their symptoms as far as possible: I know that I just need to, em, get on with it. And I think that’s what always my attitude has been, it’s a case of, this is where I’m at, this is what I need to do. Just get on with it. [Riley]. I know when I’m at work how little I think about [endometriosis]. So for me yea definitely work is important, it’s an important part of my life. [Evelyn]. …if I’m at work and I look like I shouldn’t be here I’m not here because someone is forcing me to be here, I’m here because I know this is a part of my life and I need to make sure I know how to manage it and deal with it because the option to sit at home and just think about, um, oh my god, you know, the pain, the ovary, the sadness, that’s not an option for me because what kind of life is that? [Evelyn]. Rather than be empathetic with myself, I’ve had to push through, I’ve had to turn off all of those emotions of needing rest or needing time or actually, I’m in incredible pain, and just ignore it. And that’s the sad part to me like, actually, you know, that was really a struggle. And I’m so sorry that I had to go through that. [Reece]. I just try and take it day by day, trying not to really focus on ‘oh, it’s really bad’ because then I get really down. [Iona]. I use like coping mechanisms of blocking it out and just forcing myself to get on with things and then I have times where I’m like, no I can’t do this today, it’s not going to work. [Sarah]. Theme 2: Balancing boundaries and holistic self-care Tuning into their bodies often led participants to set boundaries, particularly with regards to employment (e.g. requesting workplace adjustments), personal relationships (e.g. exploring ways to engage in sexual activity to minimise pain), and social commitments (e.g. rearranging social events). Setting boundaries generally had a positive influence on wellbeing: I’ve learned to say no which is the hardest thing for me. In my work and personal life I’ve noticed it’s benefited me so much more and I’m happier in that sense. So I think that helped my mental health a lot, knowing that it’s okay to say no. [Jaime]. I don’t generally talk about it, um, and that, that makes it harder because then people can’t see, they don’t realise you’re in pain, they don’t know you’re unwell. [Alex]. It started impacting my social life whenever I was approaching getting diagnosed I was having to cancel a lot of social events. I ended up losing like a group of people, friends [Emily]. if it’s really, you know, playing with my head I’ll go and sit and I’ll, I’ll meditate and I’ll try and just switch off from it. [Alex]. I draw quite a lot. And see drawing, drawing is therapy. I like, I like to sit and draw when I’m, when I’m feeling down or if I’m sore. [Billie]. I walk a lot. I think being outdoors, um, where it’s quiet and peaceful and beautiful is good for mental health. [Indra]. I have to be actively distracting myself all the time, um, because of the depression that is made worse by endometriosis [Jessie]. And if you can distract yourself from it […] your mind is actually occupied with something else and by the time you know it the painkillers have kicked in and helped the pain. [Evelyn]. I do find a little, a little walk, I mean if it’s in the middle of a really bad flare it’s not going to happen but if, you know, I’m coming towards the end of my cycle a little walk eases it a little. [Rowan]. I think being close to nature is, it is an escapism, it really is. You’re escaping from everything else in your world that might have you feeling low that day if you’re getting close to nature. It’s such a good feeling. [Billie]. I do smoke cannabis, um, just micro-dose, in very little doses. It helps a lot. [Jessie]. Theme 3: Empowered adaptation Participants discussed adapting to live a fulfilling life with endometriosis. Seeking social support emerged as an important coping strategy, with participants turning to friends, family, healthcare services, and online groups. Accessing these resources typically reduced isolation and enhanced overall wellbeing: I couldn’t cope without that support group, they’re amazing. They’re an amazing bunch of girls. And what makes them more amazing is that they’re going through this too. [Billie]. Um, [support groups] really helped me, but equally there’s some moments where I have to switch that off, um, because I find that it also has an impact on me, so I have to draw a line of how much I read in a day or read someone’s posts [Jaime]. I never used to be very open. But as soon as I started getting really ill I had to start opening up myself. And, emotionally, I’ve gotten a lot closer with friends and family [Iona]. I’m helping other people now, so I’m doing this for other people and not for me. So I’m doing something good and it’s kind of making me feel better about myself again. [Violet]. I can’t control my body. I can’t control my pain. And I can’t control what’s going on around me. The only thing I can do is control the way I deal with it and the way I live with it. [Mira]. I think that’s an acceptance thing. Like, if I accept that this might be as good as it gets, um, and, and, know that even if it gets worse, I know better how to cope with it than I ever did before so it’s never going to be as scary and isolating and painful. [Casey]. There’s some days where I can accept it and feel okay about [endometriosis], but then there’s days where I’m like, I feel really angry and I feel like devastated and I’m like depressed and all that, like it’s, it’s not linear. It can come and go in all these different stages. [Emily]. …hope is one of those things that keeps a lot of people going, you know if you have hope you can kind of, you can carry on. [Becky]. Integration of qualitative and quantitative results The qualitative and quantitative results were integrated by considering points of convergence, complementarity, and divergence between the datasets. This approach allowed for a more nuanced interpretation of how coping is associated with HRQoL in the context of endometriosis by drawing on both methodological paradigms. The results of this process are outlined in . The integrated findings provide a rich overview of the ways in which coping is linked to HRQoL in the context of endometriosis. Specifically, the findings converge in relation to the detrimental effects of endometriosis on HRQoL, and the role of coping in this relationship. The qualitative findings offer complementary insights to aid understanding of some of the quantitative results, by illuminating the mechanisms by which specific coping styles, such as depressive processing, information seeking, and trust in medical care, may be associated with HRQoL. For example, while depressive processing was statistically associated with poorer HRQoL, the qualitative accounts clarify how this might manifest through social withdrawal, impaired relationships, and emotional isolation. Similarly, the quantitative association between trust in medical care and more positive HRQoL is complemented by qualitative accounts indicating that supportive interactions with healthcare professionals contribute to a sense of wellbeing. Furthermore, although the quantitative data did suggest that information seeking is associated with a negative effect on wellbeing, qualitative data suggests that this may be context dependent. For example, whilst online resources can offer a sense of support and understanding, prolonged engagement with these resources may lead to increased anxiety. Some divergence between the datasets was observed, however. Specifically, there was no significant association between problem-orientated coping on HRQoL in the regression analysis (although it was significant in the correlation analysis), yet adaption, often incorporating problem-orientated and proactive coping mechanisms, was a predominant theme within qualitative accounts.

The current research is the first to explore associations between specific coping strategies and adaptation on endometriosis-related HRQoL using a mixed-methods approach. The quantitative and qualitative aspects of the present research largely complemented one another to paint a full picture of the process of adaptation and coping in this population. More broadly, the findings add to an already sizeable literature base suggesting that endometriosis is associated with poorer HRQoL and wellbeing (Wang et al., Citation2021). The consistent observation that endometriosis is associated with decreased HRQoL and wellbeing suggests a lack of effective psychosocial support for individuals experiencing the condition, and research to aid understanding of the factors underlying reduced HRQoL in endometriosis is therefore imperative to build effective interventions. The longitudinal survey findings provide key insights into how coping strategies is associated with HRQoL over time. Specifically, the data showed that avoidant coping and frequent endometriosis-related information-seeking at T1 significantly predicted reduced HRQoL at one-year follow-up. Conversely, trust in medical care demonstrated a protective effect, predicting better HRQoL over time. These findings suggest that certain coping styles can shape future health outcomes in the context of endometriosis. This reinforces the importance of early psychosocial intervention to support adaptive coping and build trust in medical support, which may promote better long-term quality of life in this population. Additionally, the findings illustrate that avoidant strategies such as social withdrawal was linked to wellbeing by negatively impacting participants’ relationships, reducing perceptions of control over endometriosis, and increasing isolation. This corroborates the findings of several previous studies, which have linked maladaptive and avoidant coping to decreased QoL in endometriosis (Eriksen et al., Citation2008; Zarbo et al., Citation2018). Therefore, interventions to reduce avoidant coping styles, such as cognitive behavioural therapy (CBT) may be useful in this population. At the time of writing, there is limited research on the impact of CBT on coping in endometriosis, however existing research suggests that this kind of therapy may support wellbeing in this population (Evans et al., Citation2019). Furthermore, placing trust in medical care had a significant and lasting protective effect on HRQoL. Although trust in medical care has not previously been examined as a coping strategy explicitly in this population, previous research suggests that maintaining a positive relationship with medical professionals can lead to a sense of validation, hope, and positivity in future treatment (Fernley, Citation2021). Within the current research, participants explained that continuing through endometriosis symptoms and forgoing support may lead to reduced wellbeing, heightened functioning detriments, and disconnection from the body. It follows that confidence in medical treatment and support may lessen these effects, ultimately increasing wellbeing and HRQoL. However, it may be argued that, rather than a coping style, trust in medical care relates to general attitudes towards healthcare. For example, whilst coping typically refers to specific actions or behaviours used to manage stress or adversity, this coping style encompasses beliefs and perceptions about the effectiveness and reliability of healthcare and treatment (Franke & Jagla, Citation2016). Nonetheless, for some individuals, trust in medical care may indeed function as a coping mechanism, increasing their confidence in treatment effectiveness, encouraging them to seek timely treatment, and instilling a sense of control towards navigating health challenges. Previous research has suggested that relationships between individuals with endometriosis and medical professionals such as GPs and gynaecological specialists are often fraught, marred by widespread misunderstanding within medical settings (Fernley, Citation2021). Therefore, reparation of this relationship should be prioritised in endometriosis care. Future research may seek to involve both groups to ascertain how this relationship may be repaired, for example by considering the support required by patients, and what may feasibly be offered by medical professionals. Empowered adaptation emerged as a prominent theme within the qualitative interviews, during which participants stressed the importance of identifying ways to live well endometriosis to support their wellbeing. Adaptation was often intertwined with the identification of self-management techniques and finding usefulness in endometriosis experiences. This observation aligns with the findings of previous research in endometriosis, which has noted a positive impact of adaptation on wellbeing (Yoon et al., Citation2021). Participants’ responses from the interviews suggest that adaptation in the context of endometriosis involves the curation of holistic self-care and coping strategies tailored to living well with the condition. Therefore, the qualitative component of the current research allowed deeper exploration of the multifaceted nature of adaptation, which underlie the divergent results. Indeed, previous research has linked adaptation to chronic illness with disease acceptance, which is a prominent driver of wellbeing in individuals experiencing several chronic conditions (Szcześniak et al., Citation2020). Therefore, disease acceptance constitutes an important area for future endometriosis research, for example by trialling randomised control trials to ascertain the impact of interventions aimed at supporting disease acceptance, such as acceptance and commitment therapy (ACT). Aligning with the qualitative findings, previous research has underlined the importance of proactive coping strategies, such as health information seeking, in supporting adaptation to chronic illness (Felton & Revenson, Citation1984). Information seeking is thought to encourage the adoption of self-care and self-management rituals, leading to increased confidence and even a sense of empowerment (Seçkin et al., Citation2018). In a study on endometriosis, Sbaffi and King (Citation2020) identified a positive attitude towards information seeking and sharing experiences online. However, this finding runs counter to the findings of the current study, which suggest that information seeking and exchanging experiences is negatively associated with HRQoL and wellbeing. The observed negative association with HRQoL might be attributed to individuals with more severe endometriosis actively seeking information and support. Additionally, the qualitative findings suggest that seeking out support online was beneficial, but only in moderation. Excessive interaction with online support led to a focus on endometriosis symptomology and worsened pain perception, which may be reflected in the quantitative findings. Moreover, it is possible that seeking out information for endometriosis may lead to increased distress by highlighting the lack of effective available treatment, the incurable and progressive nature of the condition, and the risk of psychological distress, reflected in lowered HRQoL. At the time of writing, there is no research on the impact of seeking out health literature on wellbeing in the context of endometriosis. To increase understanding of the ways in which information seeking may impact on HRQoL, further research is therefore required. Qualitative research may be beneficial to ascertain ways of making endometriosis information more accessible and helpful to those with the condition. These findings highlight several key targets for psychosocial support in individuals with endometriosis. Interventions such as Cognitive Behavioural Therapy (CBT) and Acceptance and Commitment Therapy (ACT) may be beneficial in addressing avoidant coping strategies, while promoting adaptive coping, self-management, and acceptance of the condition. Additionally, the identified protective role of trust in medical care underscores the potential value of strengthening patient-provider relationships as part of comprehensive care. Together, these insights can inform the development and tailoring of psychosocial interventions aimed at improving health-related quality of life and overall wellbeing in this population. There are limitations to the current study. First, data collection occurred during COVID-19 induced lockdowns, which may have exerted an adverse effect on wellbeing. Lockdowns have been related to limited access to medical treatment (Leonardi et al., Citation2020) and increased psychological distress in the UK (O’Connor et al., Citation2021), potentially reflected in participants’ HRQoL scores and interview responses. In addition, there was a lack of diversity within the participant sample, particularly concerning ethnicity, necessitating the exclusion of this variable from the quantitative analysis. The underrepresentation of individuals from non-White backgrounds is a prevalent issue in endometriosis research, and serves as the catalyst for a snowball effect whereby the scarcity of data has fuelled misconceptions surrounding ethnicity and endometriosis (Bougie et al., Citation2022). Therefore, future research must endeavour to recruit individuals from diverse backgrounds. Additionally, coping was measured only at Time 1. Including follow-up coping data would have allowed for a more robust longitudinal analysis of the dynamic relationship between these constructs. Finally, there was some attrition in the survey sample, with a 69.36% retention rate between Time 1 and Time 2. While no significant differences were found between participants who completed only the Time 1 survey and those who completed both waves, the reasons for attrition remain unknown as participants who dropped out could not be reached. The current study positions coping as a key driver of HRQoL in the context of endometriosis. Coping strategies demonstrated consistent associations with HRQoL over time, with the use of maladaptive, avoidant strategies linked to poorer HRQoL. Information seeking was also associated with reduced HRQoL. Conversely, placing trust in medical care had a protective effect on HRQoL. Participants stressed the importance of adaptation to their condition, by adopting self-care and self-management strategies to support their wellbeing, allowing them often to reach a point of dynamic disease acceptance. Future research should investigate the effectiveness of interventions, such as ACT and CBT, in altering coping responses and improving adaptation to living with endometriosis. Understanding the long-term impact of such interventions could inform the development of targeted approaches to support this population. Disclosure statement No potential conflict of interest was reported by the author(s). Data availability statement The data that support the findings of this study are not available due to privacy and ethical restrictions. Additional information Funding

- Bougie, O., Nwosu, I., & Warshafsky, C. (2022). Revisiting the impact of race/ethnicity in endometriosis. Reproduction & Fertility, 3(2), R34–R41. https://doi.org/10.1530/RAF-21-0106 - Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806 - Braun, V., & Clarke, V. (2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328–352. https://doi.org/10.1080/14780887.2020.1769238 - Comptour, A., Chauvet, P., Canis, M., Grémeau, A.-S., Pouly, J.-L., Rabischong, B., Pereira, B., & Bourdel, N. (2019). Patient quality of life and symptoms after surgical treatment for endometriosis. Journal of Minimally Invasive Gynecology, 26(4), 717–726. https://doi.org/10.1016/j.jmig.2018.08.005 - Eriksen, H. L. F., Gunnersen, K. F., Sørensen, J. A., Munk, T., Nielsen, T., & Knudsen, U. B. (2008). Psychological aspects of endometriosis: Differences between patients with or without pain on four psychological variables. European Journal of Obstetrics, Gynecology, and Reproductive Biology, 139(1), 100–105. https://doi.org/10.1016/j.ejogrb.2007.10.002 - Evans, S., Fernandez, S., Olive, L., Payne, L.A. and Mikocka-Walus, A. (2019). Psychological and mind-body interventions for endometriosis: a systematic review. Journal of Psychosomatic Research, 124, p.109756. https://doi.org/10.1016/j.jpsychores.2019.109756 - Felton, B. J., & Revenson, T. A. (1984). Coping with chronic illness: A study of illness controllability and the influence of coping strategies on psychological adjustment. Journal of Consulting and Clinical Psychology, 52(3), 343–353. https://doi.org/10.1037/0022-006X.52.3.343 - Fernley, N. (2021). That one doctor… Qualitative thematic analysis of 49 women’s written accounts of their endometriosis diagnosis. Journal of Endometriosis and Pelvic Pain Disorders, 13(1), 40–52. https://doi.org/10.1177/2284026520984366 - Franke, G. H., & Jagla, M. (2016). The Essen Coping Questionnaire (ECQ). European Health Psychologist, 18, 653. - Gallagher, J. S., DiVasta, A. D., Vitonis, A. F., Sarda, V., Laufer, M. R., & Missmer, S. A. (2018). The impact of endometriosis on quality of life in adolescents. The Journal of Adolescent Health, 63(6), 766–772. https://doi.org/10.1016/j.jadohealth.2018.06.027 - Grogan, S., Turley, E., & Cole, J. (2018). ‘So many women suffer in silence’: A thematic analysis of women’s written accounts of coping with endometriosis. Psychology & Health, 33(11), 1364–1378. https://doi.org/10.1080/08870446.2018.1496252 - Jankowska-Polańska, B., Kasprzyk, M., Chudiak, A., & Uchmanowicz, I. (2016). Effect of disease acceptance on quality of life in patients with chronic obstructive pulmonary disease (COPD). Pneumonologia i Alergologia Polska, 84(1), 3–10. https://doi.org/10.5603/PiAP.a2015.0079 - Jones, G., Jenkinson, C., & Kennedy, S. (2004). Development of the short form endometriosis health profile questionnaire: The EHP-5. Quality of Life Research, 13(3), 695–704. https://doi.org/10.1023/B:QURE.0000021321.48041.0e - Leonardi, M., Horne, A. W., Armour, M., Missmer, S. A., Roman, H., Rombauts, L., Hummelshoj, L., Wattiez, A., Condous, G., & Johnson, N. P. (2020). Endometriosis and the coronavirus (COVID-19) pandemic: Clinical advice and future considerations. Frontiers in Reproductive Health, 2, 5. https://doi.org/10.3389/frph.2020.00005 - Moore, C., Cogan, N., & Williams, L. (2023). A qualitative investigation into the role of illness perceptions in endometriosis-related quality of life. Journal of Health Psychology, 28(12), 1157–1171. https://doi.org/10.1177/13591053231183230 - Morgan, D. L. (2019). Commentary—after triangulation, what next? Journal of Mixed Methods Research, 13(1), 6–11. https://doi.org/10.1177/1558689818780596 - Obiegło, M., Uchmanowicz, I., Wleklik, M., Jankowska-Polańska, B. and Kuśmierz, M. (2016). The effect of acceptance of illness on the quality of life in patients with chronic heart failure. European Journal of Cardiovascular Nursing, 15(4), 241–247. https://doi.org/10.1177/1474515114564929 - O’Connor, R. C., Wetherall, K., Cleare, S., McClelland, H., Melson, A. J., Niedzwiedz, C. L., O’Carroll, R. E., O’Connor, D. B., Platt, S., Scowcroft, E., Watson, B., Zortea, T., Ferguson, E., & Robb, K. A. (2021). Mental health and well-being during the COVID-19 pandemic: Longitudinal analyses of adults in the UK COVID-19 Mental Health & Wellbeing study. The British Journal of Psychiatry, 218(6), 326–333. https://doi.org/10.1192/bjp.2020.212 - Rees, M., Kiemle, G., & Slade, P. (2022). Psychological variables and quality of life in women with endometriosis. Journal of Psychosomatic Obstetrics and Gynaecology, 43(1), 58–65. https://doi.org/10.1080/0167482X.2020.1784874 - Sbaffi, L., & King, K. (2020). Living with endometriosis: The role of the internet in supporting the diagnosis and treatment process. Journal of Consumer Health on the Internet, 24(4), 370–390. https://doi.org/10.1080/15398285.2020.1816803 - Seçkin, G., Hughes, S., Hudson, C., Laljer, D., & Yeatts, D. (2018). Positive impacts of online health information seeking on health perceptions and the mediational relationship with health communication and sense of empowerment. In Hale, T. M., Chou, W-Y, S., Cotten, S. R., & Khilnani, A. (Eds.), eHealth: Current evidence, promises, perils and future directions (vol. 15, pp. 205–240). Emerald Publishing Limited. https://doi.org/10.1108/S2050-206020180000015010 - Sepulcri, R. d. P., & do Amaral, V. F. (2009). Depressive symptoms, anxiety, and quality of life in women with pelvic endometriosis. European Journal of Obstetrics, Gynecology, and Reproductive Biology, 142(1), 53–56. https://doi.org/10.1016/j.ejogrb.2008.09.003 - Szcześniak, M., Świątek, A. H., Cieślak, M., & Świdurska, D. (2020). Disease acceptance and eudemonic well-being among adults with physical disabilities: The mediator effect of meaning in life. Frontiers in Psychology, 11, 525560. https://doi.org/10.3389/fpsyg.2020.525560 - 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 - Vitale, S. G., La Rosa, V. L., Rapisarda, A. M. C., & Laganà, A. S. (2017). Endometriosis and infertility: The impact on quality of life and mental health. Journal of Endometriosis and Pelvic Pain Disorders, 9(2), 112–115. https://doi.org/10.5301/je.5000274 - Yoon, Y., Park, M. A., & Park, S. (2021). Seeking adaptation from uncertainty: Coping strategies of South Korean women with endometriosis. Research in Nursing & Health, 44(6), 970–978. https://doi.org/10.1002/nur.22186 - Wang, Y., Li, B., Zhou, Y., Wang, Y., Han, X., Zhang, S., He, Z., & Ouyang, L. (2021). Does endometriosis disturb mental health and quality of life? A systematic review and meta-analysis. Gynecologic and Obstetric Investigation, 86(4), 315–335. https://doi.org/10.1159/000516517 - World Health Organization. (2023). Endometriosis. https://www.who.int/news-room/fact-sheets/detail/endometriosis(open in a new window). - Wysocki, G., Czapla, M., Uchmanowicz, B., Fehler, P., Aleksandrowicz, K., Rypicz, Ł., Wolska-Zogata, I., & Uchmanowicz, I. (2023). Influence of disease acceptance on the quality of life of patients with ankylosing spondylitis–single centre study. Patient Preference and Adherence, 17, 1075–1092. https://doi.org/10.2147/PPA.S403437 - Zarbo, C., Brugnera, A., Frigerio, L., Malandrino, C., Rabboni, M., Bondi, E., & Compare, A. (2018). Behavioral, cognitive, and emotional coping strategies of women with endometriosis: a critical narrative review. Archives of Women’s Mental Health, 21(1), 1–13. https://doi.org/10.1007/s00737-017-0779-9 - Zondervan, K. T., Becker, C. M., & Missmer, S. A. (2020). Endometriosis. The New England Journal of Medicine, 382(13), 1244–1256. https://doi.org/10.1056/NEJMra1810764