A Template Thematic Analysis of Self-Concept and Self-Compassion in People Living With Endometriosis: Analysis of Qualitative Survey Responses

The current study aimed to, using a deductive template thematic approach, gain a further understanding of self‐concept in individuals diagnosed with endometriosis and explore evidence of the core components of self‐compassion in written self‐concept responses. The study addressed the research questions (1) which aspects of self‐concept are influenced by living with endometriosis and (2) which aspects of self‐compassion may be important to include in compassion‐focused therapy for individuals living with endometriosis?

Kristi Mazalin was involved in the analysis and interpretation of the data and manuscript preparation and revision. Subhadra Evans was involved in the analysis and interpretation of the data and manuscript preparation and revision. Leesa Van Niekerk is tshe project lead and was involved in the study design, data collection, analysis, interpretation and manuscript preparation and revision.

Participants were provided with a detailed participant information sheet outlining information about the study, informed consent and contact details of the research team. Ethics approval for the study was obtained from the University of Tasmania Human Research Ethics Committee (H0018163: June 2021).

The qualitative data reported were collected as part of a larger online cross‐sectional survey examining self and body compassion, health‐related quality of life and psychological well‐being in individuals living with symptomatic endometriosis using an open‐ended question format (see Van Niekerk, Johnstone, and Matthewson  2022 ). A descriptive theoretical framework was employed to understand experiences of self‐concept and self‐compassion in the dataset. The goal of descriptive qualitative studies is to provide ‘a comprehensive summary of events in the everyday terms of those events’ and to take participant responses as they are rather than interpreting the data beyond what is provided by participants (Sandelowski  1993 ; Kim et al.  2017 ). Researchers stay close to the data they are analysing, and to the surface of words and experiences. From a practical perspective, this approach was selected as it was deemed an appropriate match to the ‘thin’ nature of the data we collected via the open‐ended question. The current study sample ( n =  157) is a subsample of 318 participants who completed the online survey examining self and body compassion, health‐related quality of life and psychological well‐being in individuals living with symptomatic endometriosis (see Van Niekerk, Johnstone, and Matthewson  2022 ). The sample was recruited via targeted social media advertising (e.g., Endometriosis Australia, EndoActive, endometriosis support groups) and community recruitment through flyer distribution at Australian gynaecology and pelvic physiotherapy clinics. Participants were eligible to participate in the online survey if they were aged 18 years or older, had experienced at least one endometriosis‐related symptom in the previous 4‐week period, a self‐reported confirmed endometriosis diagnosis and were able to read and respond to questions provided in English language. The qualitative data were collected via an open‐ended question within the survey: ‘Is there anything that you would like to share with us regarding living with endometriosis and how you see or perceive yourself?’. The open‐ended question allowed participants to provide a single‐word response or greater level of detail. Given the descriptive framework and the aim to understand the application of an existing self‐compassion framework, a template version of thematic analysis was deemed the most suitable method of analysis (see Figure  S1 ). Template thematic analysis attempts to balance structure and flexibility, using a high degree of structure in analysis that can accommodate thin data from numerous participants, and the application of preexisting models within the template (King  2012 ; Brooks et al.  2015 ). Unlike deeply interpretive versions of thematic analysis (e.g., reflexive thematic analysis), template analysis has the flexibility to account for survey‐based qualitative data and the use of descriptive frameworks. This technique allowed for structure early in the analysis, including the development of a template consistent with Neff's ( 2003 ) model of self‐compassion before detailed analysis and development of early themes. Content analysis was also used to detail the number and percentage of participants who endorsed each theme. The use of content analysis, or quantifying qualitative data, can be appropriate within the parameters of template analysis, which is considered a ‘small q’ approach (Braun and Clarke  2022 ). Template analysis allowed the researchers to meet the aim of understanding how self‐compassion may be reflected in participants' experiences of their bodies, with the template approach allowing for the use of deductive detailed codes to further guide data exploration. A deductive template thematic analysis approach was conducted based on the steps recommended by King ( 2012 ) and Brooks et al. ( 2015 ). The first step of developing the template involved two researchers (KM, LVN) familiarising themselves with the data by reading through the entirety of the transcripts line by line. The second step involved preliminary manual hand coding by one member of the research team (KM) to identify preliminary relevant trends within the dataset that correspond to self‐compassion theory (Neff  2003 ). All researchers then reviewed the preliminary trends and discussed emerging themes. Two researchers then re‐read the dataset, identified, organised and categorised the emergence of themes into clusters based on the existing theoretical components of self‐compassion (KM and LVN). The fourth step involved development of a coding template based on the identified themes (KM). The fifth step involved an iterative modification of the template based on the coding of 50% of the data and the final step involved finalisation of the template with the full data set coded against the template (KM and LVN). Participants were provided with a detailed participant information sheet outlining information about the study, informed consent and contact details of the research team. Ethics approval for the study was obtained from the University of Tasmania Human Research Ethics Committee (H0018163: June 2021). A critical realist approach, which argues that there is a reality to observe, but this is not independent of researchers' ideas and theories (Braun and Clarke 2022 ) was employed. The researchers acknowledge their personal biases that may stem from either a lived experience of endometriosis, working therapeutically with individuals with endometriosis and/or stemming from personal engagement in compassion‐focused frameworks. To minimise researcher bias (Noble and Smith  2015 ), the qualitative methodology incorporated strategies to account for personal biases that may influence conclusions including reflective discussions of personal experiences (Morse et al.  2002 ), maintaining coding and decision‐making records (Long and Johnson  2000 ) and regular clarification of coding definitions to strengthen interpretations (Sandelowski  1993 ).

Participants had an average age of 31.87 years with an age range between 18 and 47 years. Participants resided in Australia (92%), Europe (4%) and North America (4%). Most of the sample reported a diagnostic delay of 4 or more years (71.5%) (see Table  1 for additional sociodemographic information). Participant responses varied from 6 to 284 words, with an average response length of 39 words. The data set was reviewed to determine whether the written responses reflected the three components of self‐concept (physical self, social self and personal self) identified by Dar et al. ( 2021 ). This initial review identified 139 responses reflecting the physical self (e.g., ‘The pain and bloating make it difficult for clothing items to be worn and I feel like I am not able to be like others, any fat on my body is amplified’), 57 responses reflecting the social self (e.g., ‘I get dismissed by my doctors and family. Like I'm just complaining too much’) and 91 responses reflecting the personal self (e.g., ‘It makes me feel “less than”. Like I'm not enough’). Employing a deductive thematic approach, the data set was reviewed for content consistent with Neff's ( 2003 ) components of self‐compassion and their negative counterparts (i.e., self‐kindness vs. self‐judgement, common humanity vs. self‐isolation and mindfulness vs. overidentification). Within each self‐compassion component, a greater number of qualitative responses were reported for the negative counterpart, with several themes emerging across the three components (see Table  2 ). Participant demographic information. Components of self‐compassion and their associated themes. Overall, responses tended to skew towards the negative counterpart of self‐judgement (101 coded responses) over responding in ways that suggest kindness and compassion towards self (19 coded responses). Fifty‐four participants (34%) responded with self‐judgement in comparison to only nine respondents (5.5%) who provided responses consistent with self‐kindness. A self‐judgemental stance tended to create a sense of hopelessness and difficulty connecting with or looking forward to future goals and plans. The positive component was noted in responses that indicated acceptance of self (and endometriosis), a compassionate understanding of personal limitations due to endometriosis symptoms or treatment, the importance of prioritising self‐care needs and the adoption of pride and resilience in the face of endometriosis‐related loss or difficulties. Two themes emerged within the positive component of self‐kindness (‘I understand and accept the limits imposed by endometriosis’: Self‐acceptance; ‘It's important to understand and respect my body's limits’: Consideration of own needs) and four themes were noted within the negative counterpart of self‐judgement (‘I'm not enough’: Sense of inferiority; ‘I'm responsible for the impacts of my endo’: Self‐blame; ‘I should be able to cope better’: Negating one's needs; ‘I'm constantly comparing myself to others’: Comparison game). Theme 1a ‘I understand and accept the limits imposed by endometriosis’: Self‐acceptance. Nine participants reported accepting the limits and changes imposed by endometriosis and accepting their body's ability to undertake certain activities during pain flareups rather than criticising themselves. Some participants commented on being able to focus on activities within their limits and setting boundaries with others surrounding these personal limits through self‐advocacy. Seven participants provided responses that indicated a perception of their self and body as strong despite the difficulties associated with living with endometriosis. Three responses reflected a sense of gratitude and pride towards their body's abilities given the physical consequences of endometriosis. ‘I understand and accept the limits imposed by endometriosis’: Self‐acceptance. Nine participants reported accepting the limits and changes imposed by endometriosis and accepting their body's ability to undertake certain activities during pain flareups rather than criticising themselves. Some participants commented on being able to focus on activities within their limits and setting boundaries with others surrounding these personal limits through self‐advocacy. Seven participants provided responses that indicated a perception of their self and body as strong despite the difficulties associated with living with endometriosis. Three responses reflected a sense of gratitude and pride towards their body's abilities given the physical consequences of endometriosis. I generally perceive my body as strong. It has been through numerous surgeries, IVF, and chronic illness. I am largely accepting of my body—ID: 48, Age: 43 years, Symptom Duration: 29 years. I perceive my body and myself as being the best it can be given endometriosis and I feel good about the fact that I made the decision to accept my body despite the difficulties I have experienced. ID: 78, Age: 38, Symptom Duration: 20 Years. Theme 1b ‘It's important to understand and respect my body's limits’: Consideration of own needs . Four participants provided responses that focused on consideration of their own needs. Self‐care activities such as yoga, gardening, travelling and spending time with family were cited as activities they engage in when they need to focus on self‐care. Three respondents described understanding and respecting their body's limits and attending to the needs of their body in the moment. This may include taking time to rest when needed and setting realistic expectations regarding their support needs. I generally perceive my body as strong. It has been through numerous surgeries, IVF, and chronic illness. I am largely accepting of my body—ID: 48, Age: 43 years, Symptom Duration: 29 years. I perceive my body and myself as being the best it can be given endometriosis and I feel good about the fact that I made the decision to accept my body despite the difficulties I have experienced. ID: 78, Age: 38, Symptom Duration: 20 Years. ‘It's important to understand and respect my body's limits’: Consideration of own needs . Four participants provided responses that focused on consideration of their own needs. Self‐care activities such as yoga, gardening, travelling and spending time with family were cited as activities they engage in when they need to focus on self‐care. Three respondents described understanding and respecting their body's limits and attending to the needs of their body in the moment. This may include taking time to rest when needed and setting realistic expectations regarding their support needs. Endo has forced me to be more in touch with my body and to listen to it. I am better at setting boundaries regarding my capabilities than I used to be when I was younger. –ID: 31, Age: 33 years, Symptom Duration: 20 years. Theme 1c ‘I'm not enough’: Feelings of inadequacy. Fifty‐two participants provided responses that indicated feelings of inadequacy. Many responders reported feeling inferior to other females due to a belief that ‘they are not enough’. The sense of inadequacy tended to centre on body differences (e.g., ‘endo belly’), physical appearance (feeling less attractive due to symptoms of endometriosis) or lowered levels of functionality (e.g., not being as physically able as others). Responses also reflected ‘being broken’ and self‐conscious of symptoms and bodily changes associated with endometriosis treatments. This included difficulty conceiving, surgical scars, weight gain, bloating and painful sexual intercourse, and being ‘different to how a woman should be’. Feelings of inadequacy were also noted regarding intimate relationships, with responses noting a sense of inadequacy as an intimate partner due to the experience of painful sexual intercourse. Participants reported a sense of guilt associated with difficulty attending to daily activities, employment, family and parenting responsibilities, psychological distress and persistent fatigue. Endo has forced me to be more in touch with my body and to listen to it. I am better at setting boundaries regarding my capabilities than I used to be when I was younger. –ID: 31, Age: 33 years, Symptom Duration: 20 years. ‘I'm not enough’: Feelings of inadequacy. Fifty‐two participants provided responses that indicated feelings of inadequacy. Many responders reported feeling inferior to other females due to a belief that ‘they are not enough’. The sense of inadequacy tended to centre on body differences (e.g., ‘endo belly’), physical appearance (feeling less attractive due to symptoms of endometriosis) or lowered levels of functionality (e.g., not being as physically able as others). Responses also reflected ‘being broken’ and self‐conscious of symptoms and bodily changes associated with endometriosis treatments. This included difficulty conceiving, surgical scars, weight gain, bloating and painful sexual intercourse, and being ‘different to how a woman should be’. Feelings of inadequacy were also noted regarding intimate relationships, with responses noting a sense of inadequacy as an intimate partner due to the experience of painful sexual intercourse. Participants reported a sense of guilt associated with difficulty attending to daily activities, employment, family and parenting responsibilities, psychological distress and persistent fatigue. I feel less than other women because I can never have children because of my Endo—ID: 3, Age: 31 years, Symptom Duration: 16 years. I do feel angry with my body for not working the way it should, I often feel inadequate as a woman because the defining thing that makes me a woman doesn't work how it should—ID: 17, Age: 25, Symptom Duration: 7 years. Theme 1d ‘I'm responsible for the impacts of my endo’: Self‐blame. Twenty‐two responses reflected a sense of self‐blame, with respondents commonly reporting self‐blame in association with an inability to directly control the symptoms of endometriosis, conceive or engage in daily activities. Some respondents reported feeling trapped inside their own bodies due to feelings of uncertainty and powerlessness associated with an inability to control and alleviate endometriosis‐related symptoms. I feel less than other women because I can never have children because of my Endo—ID: 3, Age: 31 years, Symptom Duration: 16 years. I do feel angry with my body for not working the way it should, I often feel inadequate as a woman because the defining thing that makes me a woman doesn't work how it should—ID: 17, Age: 25, Symptom Duration: 7 years. ‘I'm responsible for the impacts of my endo’: Self‐blame. Twenty‐two responses reflected a sense of self‐blame, with respondents commonly reporting self‐blame in association with an inability to directly control the symptoms of endometriosis, conceive or engage in daily activities. Some respondents reported feeling trapped inside their own bodies due to feelings of uncertainty and powerlessness associated with an inability to control and alleviate endometriosis‐related symptoms. The emotional guilt of not being able to be there for your children when they have needed you. The emotional and mental pain children go through watching me in pain in hospital, listening to me cry in pain, letting them down when plans change. I carry years of guilt over this—ID: 55, Age: 49 years, Symptom Duration: 30 years. Theme 1e ‘I should be able to cope better’: Negating own needs. Twelve responses reflected negating of one's needs rather than being open and accepting of these. Participants viewed themselves as defective, worthless, inadequate and unworthy of self‐care practices or of being taken care of by others, despite the desire or need for support and advocacy in various settings. Responses within this theme also reflected a perception that the person living with endometriosis should suppress, ignore and mask pain and distress. Participants noted struggling through both physical and psychological pain without seeking support, or advocating for their own needs, due to fear of negative evaluation, being judged and misunderstood or being seen as requesting unreasonable ‘special treatment’. The emotional guilt of not being able to be there for your children when they have needed you. The emotional and mental pain children go through watching me in pain in hospital, listening to me cry in pain, letting them down when plans change. I carry years of guilt over this—ID: 55, Age: 49 years, Symptom Duration: 30 years. ‘I should be able to cope better’: Negating own needs. Twelve responses reflected negating of one's needs rather than being open and accepting of these. Participants viewed themselves as defective, worthless, inadequate and unworthy of self‐care practices or of being taken care of by others, despite the desire or need for support and advocacy in various settings. Responses within this theme also reflected a perception that the person living with endometriosis should suppress, ignore and mask pain and distress. Participants noted struggling through both physical and psychological pain without seeking support, or advocating for their own needs, due to fear of negative evaluation, being judged and misunderstood or being seen as requesting unreasonable ‘special treatment’. I struggle through the pain and frequently don't tell people, because I worry that I appear as though I am moaning constantly—ID: 99, Age: 34, Symptom Duration: 22 years. Broken, not worth looking after—ID: 153, Age: 39, Symptom Duration: 26 years. Theme 1f ‘I'm constantly comparing myself to others’: Comparison game. Fourteen participants’ responses mentioned comparing themselves to people without endometriosis. This comparison resulted in negative self‐judgement regarding personal abilities and bodily appearance and functionality. Respondents indicated that they compared themselves to other women more frequently when they felt silenced by people without endometriosis and were left questioning the legitimacy of their experiences. I struggle through the pain and frequently don't tell people, because I worry that I appear as though I am moaning constantly—ID: 99, Age: 34, Symptom Duration: 22 years. Broken, not worth looking after—ID: 153, Age: 39, Symptom Duration: 26 years. ‘I'm constantly comparing myself to others’: Comparison game. Fourteen participants’ responses mentioned comparing themselves to people without endometriosis. This comparison resulted in negative self‐judgement regarding personal abilities and bodily appearance and functionality. Respondents indicated that they compared themselves to other women more frequently when they felt silenced by people without endometriosis and were left questioning the legitimacy of their experiences. Endometriosis has affected how I see myself as I am bloated most of the time and I look at other women and I get jealous of their flat tummies. Knowing I can't do anything about it is the worst part—ID: 51, Age: 24, Symptom Duration: 8 years. Invisible diseases are hard because no one can see there is anything wrong and it makes things extremely difficult because you are constantly comparing yourself to others because it's like you can't acknowledge the underlying problems—ID: 149, Age: 24, Symptom Duration: 11 Years. Endometriosis has affected how I see myself as I am bloated most of the time and I look at other women and I get jealous of their flat tummies. Knowing I can't do anything about it is the worst part—ID: 51, Age: 24, Symptom Duration: 8 years. Invisible diseases are hard because no one can see there is anything wrong and it makes things extremely difficult because you are constantly comparing yourself to others because it's like you can't acknowledge the underlying problems—ID: 149, Age: 24, Symptom Duration: 11 Years. In general, responses were skewed towards the negative counterpart of self‐isolation (99 coded responses) rather than in ways suggestive of common humanity (7 coded responses). Thirty‐three participants (21%) reported a sense of self‐isolation in response to living with endometriosis. Responses reflected a belief that other's (healthcare professionals, employers, support networks) lack an understanding of the multilevel impacts of endometriosis, resulting in feeling judged and misunderstood. A lack of resources, education, support and shared understanding within the community was also frequently referred to, adding to a sense of isolation and lack of shared understanding. Participants also indicated that it was difficult to connect with other people living with endometriosis, resulting in isolation, loneliness and avoidance of others. In contrast, a small proportion of responses reflected on the sense of understanding and community gained through connecting with other people living with endometriosis via support groups, leading to feelings of understanding and acceptance. Two themes emerged within the positive component of common humanity (‘Knowing other people with endo has really helped’: Shared human experience; ‘It's good to have a community of support people’: Acceptance by others) and five themes were noted within the negative counterpart of self‐isolation (‘I'm on my own in this’: Experience of loneliness; ‘It's better just to pretend you're okay’: Withdrawal and avoidance; ‘Unless you have endo, you really don't get it’: Misunderstanding or judgement by others; ‘I'm always asking for help’: Feeling like a burden; ‘I wish more people understood it’: Lack of knowledge and education). Theme 2a ‘Knowing other people with endo has really helped’: Shared human experience. Of the four participants whose responses reflected the expression of common humanity, this was mostly associated with connection to other people living with endometriosis. Respondents explained that joining an endometriosis support group assisted with reducing feelings of isolation as other group members understood their struggles and had experienced similar difficulties. ‘Knowing other people with endo has really helped’: Shared human experience. Of the four participants whose responses reflected the expression of common humanity, this was mostly associated with connection to other people living with endometriosis. Respondents explained that joining an endometriosis support group assisted with reducing feelings of isolation as other group members understood their struggles and had experienced similar difficulties. Joining up with endo support groups this year has really helped me feel less isolated—ID: 124, Age: 28 years, Symptom Duration: 11 years. I know now that it's more common and not my fault, so this has helped with accepting my body—ID: 155, Age: 45 years, Symptom Duration: 30 years. Theme 2b ‘It's good to have a community of support people’: Acceptance by others. Three responses reflected that acceptance by others allowed a sense of shared understanding and connection. These responses highlighted that a connection with others who share similar experiences provided a community of acceptance and support. Acceptance and a sense of belonging fostered a compassionate approach towards the self and acceptance of working within the limits of one's body. Joining up with endo support groups this year has really helped me feel less isolated—ID: 124, Age: 28 years, Symptom Duration: 11 years. I know now that it's more common and not my fault, so this has helped with accepting my body—ID: 155, Age: 45 years, Symptom Duration: 30 years. ‘It's good to have a community of support people’: Acceptance by others. Three responses reflected that acceptance by others allowed a sense of shared understanding and connection. These responses highlighted that a connection with others who share similar experiences provided a community of acceptance and support. Acceptance and a sense of belonging fostered a compassionate approach towards the self and acceptance of working within the limits of one's body. I have learnt from others with endo that it's hard for others to help me if I don't acknowledge it (endometriosis). Which in a way, feels like becoming more ‘compassionate’ and working with my body rather than working against it—ID: 120, Age: 30 years, Symptom Duration: 17 years. Theme 2c ‘I'm on my own in this’: Experience of loneliness. Seven responses reflected a sense of only being able to rely on self when managing the symptoms of endometriosis. Responses referred to a lack of treatment options, information regarding pain management and endometriosis resources which contributed to feelings of isolation, loneliness and responsibility for the consequences of endometriosis. Respondents commented on needing to explain and educate others about endometriosis and any limitations to their employer and feeling like any assistance was left to them to coordinate. Respondents indicated that although they attempted to communicate their endometriosis‐related needs to others around them, they were often misunderstood or ignored, adding further to a sense of isolation and being on their own. Five respondents reported persistent feelings of loneliness due to the impact of endometriosis on their capacity to engage in life roles, occupational settings and friendships. Responses also reflected a sense of loneliness due to limited access to supportive individuals with a shared lived experience of endometriosis. Participants wrote about yearning for access to a support group, increased awareness and understanding of how endometriosis affects one's health‐related quality of life. I have learnt from others with endo that it's hard for others to help me if I don't acknowledge it (endometriosis). Which in a way, feels like becoming more ‘compassionate’ and working with my body rather than working against it—ID: 120, Age: 30 years, Symptom Duration: 17 years. ‘I'm on my own in this’: Experience of loneliness. Seven responses reflected a sense of only being able to rely on self when managing the symptoms of endometriosis. Responses referred to a lack of treatment options, information regarding pain management and endometriosis resources which contributed to feelings of isolation, loneliness and responsibility for the consequences of endometriosis. Respondents commented on needing to explain and educate others about endometriosis and any limitations to their employer and feeling like any assistance was left to them to coordinate. Respondents indicated that although they attempted to communicate their endometriosis‐related needs to others around them, they were often misunderstood or ignored, adding further to a sense of isolation and being on their own. Five respondents reported persistent feelings of loneliness due to the impact of endometriosis on their capacity to engage in life roles, occupational settings and friendships. Responses also reflected a sense of loneliness due to limited access to supportive individuals with a shared lived experience of endometriosis. Participants wrote about yearning for access to a support group, increased awareness and understanding of how endometriosis affects one's health‐related quality of life. It has taken me a long time and a lot of my own research post laparoscopy to figure out how to manage my symptoms and bodily reactions. I wish there was more information on endometriosis—ID: 22, Age: 25 years, Symptom Duration: 8 years. I feel like my body is letting me down and I have no help from anyone as doctors sometimes don't know how to help you when medicine stops working and you're not well or in pain. I feel so lonely—ID: 62: Age: 40, Symptom Duration: 22 years. Theme 2d ‘It's better to just pretend you're okay’: Withdrawal and avoidance. Twenty‐three responses reflected withdrawal from personal and occupational activities, behavioural or emotional avoidance or reducing help‐seeking behaviours. Respondents reported minimising their distress and avoiding medical intervention and monitoring. Reference was also made to maladaptive coping strategies such as pretending not to be in pain or trying to supress emotions. Women wrote about questioning their pain and symptom experience, lacking confidence to trust in their own knowledge of their body and endometriosis‐symptom experience. Avoidance of medical or personal support occurred in response to reported distressing experiences of feeling invalidated, dismissed and ignored by healthcare professionals or significant others. Five responses reported withdrawal from social activities and intimate relationships due to impaired body image. It has taken me a long time and a lot of my own research post laparoscopy to figure out how to manage my symptoms and bodily reactions. I wish there was more information on endometriosis—ID: 22, Age: 25 years, Symptom Duration: 8 years. I feel like my body is letting me down and I have no help from anyone as doctors sometimes don't know how to help you when medicine stops working and you're not well or in pain. I feel so lonely—ID: 62: Age: 40, Symptom Duration: 22 years. ‘It's better to just pretend you're okay’: Withdrawal and avoidance. Twenty‐three responses reflected withdrawal from personal and occupational activities, behavioural or emotional avoidance or reducing help‐seeking behaviours. Respondents reported minimising their distress and avoiding medical intervention and monitoring. Reference was also made to maladaptive coping strategies such as pretending not to be in pain or trying to supress emotions. Women wrote about questioning their pain and symptom experience, lacking confidence to trust in their own knowledge of their body and endometriosis‐symptom experience. Avoidance of medical or personal support occurred in response to reported distressing experiences of feeling invalidated, dismissed and ignored by healthcare professionals or significant others. Five responses reported withdrawal from social activities and intimate relationships due to impaired body image. Waiting for diagnosis, you go to countless doctors who tell you it's all in your head, you grow distant from your partners you can't be physical with, and you withdraw from social situations because you don't even recognise your body or your mental state—ID: 9, Age: 25, Symptom Duration: 10 years. Theme 2e ‘Unless you have endo, you really don't get it’: Feeling misunderstood or judged by others. Fifteen responses referenced feeling misunderstood or judged by others. Within these 15 responses, five participants noted that they believed that a diagnosis would alleviate this but that an eventual diagnosis made little difference and they continued to feel misunderstood or minimised by healthcare professionals, significant others or employers. Responses indicated that the misunderstandings and negative judgement by others could be attributed to the ‘invisibility’ of endometriosis. Negative judgements referred to in the responses included being perceived or referred to as help‐seeking, vain, dramatic and dishonest. These judgements added to feelings of inadequacy and reinforced the belief that suppression of thoughts, feelings and experiences, was a ‘safer option than disclosing your difficulties’. Participants reflected those misunderstandings and judgements regarding physical symptoms such as bloating (endo belly), resulted in painful conversations when others would see this symptom as a sign of pregnancy. Respondents indicated that these conversations were extremely distressing, degrading and alienating. Nine responses reflected a lack of shared community, citing limited opportunities to connect with others who share similar lived endometriosis‐related experiences. Respondent's responses referred to feeling silenced and isolated due to limited access to a community of other people living with endometriosis. A lack of shared community was mentioned as leading to the comparison game, which resulted in distress, inadequacy and isolation. Waiting for diagnosis, you go to countless doctors who tell you it's all in your head, you grow distant from your partners you can't be physical with, and you withdraw from social situations because you don't even recognise your body or your mental state—ID: 9, Age: 25, Symptom Duration: 10 years. ‘Unless you have endo, you really don't get it’: Feeling misunderstood or judged by others. Fifteen responses referenced feeling misunderstood or judged by others. Within these 15 responses, five participants noted that they believed that a diagnosis would alleviate this but that an eventual diagnosis made little difference and they continued to feel misunderstood or minimised by healthcare professionals, significant others or employers. Responses indicated that the misunderstandings and negative judgement by others could be attributed to the ‘invisibility’ of endometriosis. Negative judgements referred to in the responses included being perceived or referred to as help‐seeking, vain, dramatic and dishonest. These judgements added to feelings of inadequacy and reinforced the belief that suppression of thoughts, feelings and experiences, was a ‘safer option than disclosing your difficulties’. Participants reflected those misunderstandings and judgements regarding physical symptoms such as bloating (endo belly), resulted in painful conversations when others would see this symptom as a sign of pregnancy. Respondents indicated that these conversations were extremely distressing, degrading and alienating. Nine responses reflected a lack of shared community, citing limited opportunities to connect with others who share similar lived endometriosis‐related experiences. Respondent's responses referred to feeling silenced and isolated due to limited access to a community of other people living with endometriosis. A lack of shared community was mentioned as leading to the comparison game, which resulted in distress, inadequacy and isolation. I had to quit my job due to the stress and pain, the endo pain was so bad I vomited all over myself at work and the Drs still told me to take Panadol because it ‘isn't serious’. It's disgusting the way women with these conditions get treated. It's not like we're teenagers trying to skip PE because of our period, it's ruining my life—ID: 63, Age: 26 years, Symptom Duration: 13 years. The treatment from partners, medical staff, specialists, and employers was often degrading. Often made to feel inadequate, unable, weak, flaky, irresponsible, immature, and a liar—ID: 73, Age: 47 years, Symptom Duration: 25 years. Theme 2f ‘I'm always asking for help’: Feeling like a burden. Fifteen participants reported feeling like a burden to others. Responses reflected a sense of guilt at having to rely on others for additional support because of pain flareups, fertility treatments or fatigue. References to being a burden were made regarding parenting, sexually intimate relationships, managing daily household tasks and within employment settings. Responses also indicated that feeling like a burden to others contributed to a reluctance to ask for support or advocate for one's needs in both intimate and employment relationships. I had to quit my job due to the stress and pain, the endo pain was so bad I vomited all over myself at work and the Drs still told me to take Panadol because it ‘isn't serious’. It's disgusting the way women with these conditions get treated. It's not like we're teenagers trying to skip PE because of our period, it's ruining my life—ID: 63, Age: 26 years, Symptom Duration: 13 years. The treatment from partners, medical staff, specialists, and employers was often degrading. Often made to feel inadequate, unable, weak, flaky, irresponsible, immature, and a liar—ID: 73, Age: 47 years, Symptom Duration: 25 years. ‘I'm always asking for help’: Feeling like a burden. Fifteen participants reported feeling like a burden to others. Responses reflected a sense of guilt at having to rely on others for additional support because of pain flareups, fertility treatments or fatigue. References to being a burden were made regarding parenting, sexually intimate relationships, managing daily household tasks and within employment settings. Responses also indicated that feeling like a burden to others contributed to a reluctance to ask for support or advocate for one's needs in both intimate and employment relationships. I've struggled in romantic relationships as I don't want to burden someone else with my struggles with endometriosis. I would give anything for a cure and to be able to live life more fully—ID: 40, Age: 34 years, Symptom Duration: 22 years. Theme 2g ‘I wish more people really understood it’: Lack of knowledge and education. Twenty responses referred to limited education and resources regarding endometriosis. Respondents indicated that they were required to undertake their own research to understand the diagnosis, symptoms and available treatments. Responses reflected that pain relief was the main option offered by health practitioners while other aspects of the diagnosis were not addressed (e.g., sexual relationships). A preference for more general awareness about the implications of chronic health conditions such as endometriosis to increase shared understanding from others and target misinformation and stigma were suggested by many participants. Several respondents also indicated that a lack of education and resources had contributed to relationship difficulties as they had limited information to communicate their experiences to loved ones. I've struggled in romantic relationships as I don't want to burden someone else with my struggles with endometriosis. I would give anything for a cure and to be able to live life more fully—ID: 40, Age: 34 years, Symptom Duration: 22 years. ‘I wish more people really understood it’: Lack of knowledge and education. Twenty responses referred to limited education and resources regarding endometriosis. Respondents indicated that they were required to undertake their own research to understand the diagnosis, symptoms and available treatments. Responses reflected that pain relief was the main option offered by health practitioners while other aspects of the diagnosis were not addressed (e.g., sexual relationships). A preference for more general awareness about the implications of chronic health conditions such as endometriosis to increase shared understanding from others and target misinformation and stigma were suggested by many participants. Several respondents also indicated that a lack of education and resources had contributed to relationship difficulties as they had limited information to communicate their experiences to loved ones. I wish that there would be some sort of public health campaign about all the reasons why a woman can have a ‘bump’ that doesn't give people the right to ask if she is pregnant. It breaks my heart to be walking around looking so fat because of fertility treatment that I need to have a baby, then people asking about that baby. It is not just picking at a scab, it's like people are ripping it open and pouring lemon juice all over it—ID: 47, Age: 33 years, Symptom Duration: 18 years. I wish that there would be some sort of public health campaign about all the reasons why a woman can have a ‘bump’ that doesn't give people the right to ask if she is pregnant. It breaks my heart to be walking around looking so fat because of fertility treatment that I need to have a baby, then people asking about that baby. It is not just picking at a scab, it's like people are ripping it open and pouring lemon juice all over it—ID: 47, Age: 33 years, Symptom Duration: 18 years. Overall, responses were skewed towards the negative counterpart of overidentification (95 coded responses) rather than in ways suggestive of mindfulness (14 coded responses). Forty‐nine respondents referred to a sense of suffering, anticipation of future suffering or pain or having difficulty engaging meaningfully in the present. Comparatively, only nine respondents' responses reflected neutrality and openness to the experience of endometriosis. One theme emerged within the positive component of mindfulness (‘I can adapt to what is happening within my body’: Practical acceptance) and three themes were noted within the negative counterpart of overidentification (‘I'm piloting a machine that feels broken’: The struggle of endometriosis; ‘There's so much uncertainty to live with’: Consuming thoughts and emotions; ‘It's easier to just tune out of my body’: Emotional suppression and numbing). Theme 3a ‘I can adapt to what is happening with my body’: Practical acceptance. The term practical acceptance refers to the ability to accept situations and experiences that are outside personal control without judgement. Eight responses were reflective of acceptance of endometriosis‐related experiences (e.g., symptom fluctuations, physical impacts). This included acceptance towards the impacts of endometriosis, despite ongoing experiences of hardship, struggle, pain and fatigue. Other responses referred to a sense of pride fostered through living with endometriosis and the strength and resilience of their body. Six responses reflected a sense of acceptance towards the present moment in living with endometriosis. These responses referred to an acknowledgement and acceptance of endometriosis and an ability to see the ‘diagnosis’ as separate from their identity. Only three responses referred to an acceptance of the bodily changes associated with endometriosis and a sense of openness to the frequency of endometriosis‐related symptoms. ‘I can adapt to what is happening with my body’: Practical acceptance. The term practical acceptance refers to the ability to accept situations and experiences that are outside personal control without judgement. Eight responses were reflective of acceptance of endometriosis‐related experiences (e.g., symptom fluctuations, physical impacts). This included acceptance towards the impacts of endometriosis, despite ongoing experiences of hardship, struggle, pain and fatigue. Other responses referred to a sense of pride fostered through living with endometriosis and the strength and resilience of their body. Six responses reflected a sense of acceptance towards the present moment in living with endometriosis. These responses referred to an acknowledgement and acceptance of endometriosis and an ability to see the ‘diagnosis’ as separate from their identity. Only three responses referred to an acceptance of the bodily changes associated with endometriosis and a sense of openness to the frequency of endometriosis‐related symptoms. I try to stay open to daily change in my body, it helps me know what I'm experiencing, and to be accepting of my body when it's having a bad day—ID: 136, Age: 28, Symptom Duration: 10 years. Theme 3b ‘I'm piloting a machine that feels broken’: The struggle of endometriosis. Forty‐five responses reflected difficulties seeing beyond the pain, body dysfunction and chronic fatigue that accompany the experience of living with endometriosis. Respondents reflected feeling trapped inside their bodies with difficulty separating themselves from the physical impacts of endometriosis. Some responses noted that internal resources are consumed when trying to survive from daily painful encounters. Others reported difficulty trusting the functionality of their own body, making it difficult to look forward to and plan for the future. Some respondents indicated that they either ignored or avoided painful symptoms for lengthy periods of time to escape the distress associated with living with endometriosis and their loss of trust in their body. Responses also reflected body image challenges, with bloating and weight gain impacting on self‐confidence and behaviours such as clothing choice. Other responses reflected concern that endometriosis prevented the respondent from being able to achieve their full potential. I try to stay open to daily change in my body, it helps me know what I'm experiencing, and to be accepting of my body when it's having a bad day—ID: 136, Age: 28, Symptom Duration: 10 years. ‘I'm piloting a machine that feels broken’: The struggle of endometriosis. Forty‐five responses reflected difficulties seeing beyond the pain, body dysfunction and chronic fatigue that accompany the experience of living with endometriosis. Respondents reflected feeling trapped inside their bodies with difficulty separating themselves from the physical impacts of endometriosis. Some responses noted that internal resources are consumed when trying to survive from daily painful encounters. Others reported difficulty trusting the functionality of their own body, making it difficult to look forward to and plan for the future. Some respondents indicated that they either ignored or avoided painful symptoms for lengthy periods of time to escape the distress associated with living with endometriosis and their loss of trust in their body. Responses also reflected body image challenges, with bloating and weight gain impacting on self‐confidence and behaviours such as clothing choice. Other responses reflected concern that endometriosis prevented the respondent from being able to achieve their full potential. I struggle with my body and feel trapped in it‐ it sometimes feels like I'm piloting a machine that keeps malfunctioning. I'm scared of the next flare and how much they'll affect my mood‐ feels like it's me against my body—ID: 36, Age: 27 years, Symptom Duration: 6 years. I have spent years being frightened of the level of pain I know my body can inflict on me. Being in excruciating pain means one's trust in one's body disintegrates. To say that I hold my body in fear is an understatement—ID: 65, Age: 41 years, Symptom Duration: 27 years. Theme 3c ‘There is so much uncertainty to live with’: Consuming thoughts and emotions. Thirteen responses referred to endometriosis‐related thoughts including negative predictions and intolerance of uncertainty. Responses referred to difficulty managing thoughts associated with their health, body, or capacity because of endometriosis. Some responses indicated that anxious thoughts were linked to previous negative endometriosis‐related experiences. Cognitive distortions reflected in the written responses included black and white thinking, mind‐reading, discounting the positive, predicting the future. Nineteen respondents indicated experiencing emotions such as loneliness, fear, anxiety, guilt and sadness. Fear and anxiety were associated with predictive thinking, the unpredictable nature of symptoms, difficulty accessing information and treatment, concern about intimate relationships and maintaining employment. Responses referred to heightened emotional responses in the lead up to interactions with medical practitioners or when discussing fertility with family, friends, or colleagues. I struggle with my body and feel trapped in it‐ it sometimes feels like I'm piloting a machine that keeps malfunctioning. I'm scared of the next flare and how much they'll affect my mood‐ feels like it's me against my body—ID: 36, Age: 27 years, Symptom Duration: 6 years. I have spent years being frightened of the level of pain I know my body can inflict on me. Being in excruciating pain means one's trust in one's body disintegrates. To say that I hold my body in fear is an understatement—ID: 65, Age: 41 years, Symptom Duration: 27 years. ‘There is so much uncertainty to live with’: Consuming thoughts and emotions. Thirteen responses referred to endometriosis‐related thoughts including negative predictions and intolerance of uncertainty. Responses referred to difficulty managing thoughts associated with their health, body, or capacity because of endometriosis. Some responses indicated that anxious thoughts were linked to previous negative endometriosis‐related experiences. Cognitive distortions reflected in the written responses included black and white thinking, mind‐reading, discounting the positive, predicting the future. Nineteen respondents indicated experiencing emotions such as loneliness, fear, anxiety, guilt and sadness. Fear and anxiety were associated with predictive thinking, the unpredictable nature of symptoms, difficulty accessing information and treatment, concern about intimate relationships and maintaining employment. Responses referred to heightened emotional responses in the lead up to interactions with medical practitioners or when discussing fertility with family, friends, or colleagues. The uncertainty about what will happen next and when the symptoms will worsen makes it hard to plan. It's hard to look forward to anything with confidence and that adds to distress and can cause a spiral of negative thoughts about my health, my body, and my abilities—ID: 33, Age: 33 years, Symptom Duration: 16 years. Theme 3d ‘It's easier to just tune out from my body’: Emotional suppression and numbing. Eighteen responses noted the use of emotional suppression to cope with the endometriosis‐related impacts. Responses referred to difficulty staying connected to the body, feeling emotionally numb or dissociated, particularly regarding engagement with medical professionals. Respondents referred to being in autopilot rather than actively engaging in value‐directed decision making. The uncertainty about what will happen next and when the symptoms will worsen makes it hard to plan. It's hard to look forward to anything with confidence and that adds to distress and can cause a spiral of negative thoughts about my health, my body, and my abilities—ID: 33, Age: 33 years, Symptom Duration: 16 years. ‘It's easier to just tune out from my body’: Emotional suppression and numbing. Eighteen responses noted the use of emotional suppression to cope with the endometriosis‐related impacts. Responses referred to difficulty staying connected to the body, feeling emotionally numb or dissociated, particularly regarding engagement with medical professionals. Respondents referred to being in autopilot rather than actively engaging in value‐directed decision making. I don't feel like my body is MY body, I feel like there are two parts of me and I lug around and care for this other me. It is dissociated from me, and it is me at the same time. Sometimes I feel like my body has shrunk down to just my thoughts and my pain—ID: 148, Age: 24 years, Symptom Duration: 6 years. I don't feel like my body is MY body, I feel like there are two parts of me and I lug around and care for this other me. It is dissociated from me, and it is me at the same time. Sometimes I feel like my body has shrunk down to just my thoughts and my pain—ID: 148, Age: 24 years, Symptom Duration: 6 years.

In addition to the negative associations noted between endometriosis and psychological well‐being, a growing body of literature has explored the relationship between endometriosis and self‐concept. Self‐concept has been defined as specifically relating to the different domains of self, such as the social self (how other people view or perceive me), the personal self (how I view or perceive myself) and the physical self (how I view or perceive my physical body) (Dar et al.  2021 ), with the emphasis on the perception of these domains. Given that the onset of endometriosis‐related symptoms occurs for many during adolescence, and symptom exacerbations frequently occur during critical life transitions (e.g., forming friendships, commencing sexual relationships, entering the workforce) (Missmer et al.  2021 ), it is not surprising that alterations in self‐concept may occur. Moradi et al. ( 2014 ) conducted focus group interviews with 35 Australian individuals diagnosed with endometriosis to explore their lived experience. Several negative themes linked with self‐concept were identified including identity disturbance characterised by a sense of failure, loss of female identity and sexual self and disrupted motherhood. Similarly, Cole, Grogan, and Turley ( 2021 ) note qualitative themes associated with a sense of personal failure in individuals with endometriosis linked to infertility and difficulties engaging in everyday maternal activities. The intersection between cultural expectations of female identity and fertility has also been linked to social isolation for individuals diagnosed with endometriosis (Sharma and Mishra  2018 ), adding weight to the importance of considering the unique consequences of the condition past that of a biomedical framework to a broader biopsychosociocultural framework. Within the domain of social self, changes are noted within intimate relationships, educational and occupational roles and friendships (Cole et al. 2021 ). Within the domain of the personal self, feelings of failure and inadequacy have been noted, particularly in relation to beliefs about fertility, femininity and womanhood (Facchin et al.  2017 ; Márki et al.  2022 ). The difficulties associated with maintaining positive self‐concept, in the face of diagnoses associated with physical and psychological symptoms, may be mitigated through enhancing an individual's level of self‐compassion (Muris and Petrocchi  2017 ). Neff ( 2003 ) conceptualised self‐compassion as comprising self‐kindness (self‐judgement), common humanity (isolation) and mindfulness (overidentification). For individuals diagnosed with endometriosis, enhancing self‐kindness may buffer against the negative self‐judgement focused on limitations experienced because of the condition (e.g., changes in roles). Increasing an individual's recognition that there are some common experiences for those diagnosed with endometriosis (common humanity) may lower the sense of isolation and powerlessness. Finally, enhancing willingness to observe and experience negative thoughts or emotions, through mindfulness, may also potentially mitigate the distress associated with negative self‐appraisals (Neff  2003 ). Given that greater self‐compassion has been posited as protective in chronic health issues (Sirois and Rowse  2016 ), it also provides promise as an effective therapeutic approach for individuals with endometriosis. Although self‐compassion has been noted to provide a protective buffer to mitigate the impacts of living with persistent health conditions (Sirois and Rowse  2016 ), a detailed understanding of the key endometriosis‐related self‐concept areas to target with compassion‐focused therapies is lacking, meaning that psychological intervention may be provided with a ‘one size fits all’ approach, rather than addressing the specific consequences of endometriosis. Furthermore, little is known about the relevance of the specific domains of self‐compassion (e.g., self‐kindness, common humanity, mindfulness) in treatment planning. Given the importance of tailoring endometriosis‐related treatment to the client's symptomatic profile (Van Niekerk, Johnstone, and Matthewson  2022 ), and the financial burden associated with accessing psychological treatment for endometriosis‐related distress (Armour et al.  2022 ), the design of targeted brief psychological interventions is required.

The current study explored the potential changes to self‐concept associated with endometriosis and the relevance of self‐compassion for people living with endometriosis. In general, the qualitative themes identified highlighted that living with endometriosis is linked to a variety of self‐concept changes and that the lived experience accounts are more reflective of the negative components of self‐compassion than their positive counterparts. These preliminary findings suggest that adopting a compassion‐focused therapeutic framework may assist in mitigating the influence of endometriosis‐related changes to self‐concept, with an emphasis on increasing engagement in self‐kindness, mindfulness and cultivating a sense of common humanity. Several themes were identified that reflected a tendency to engage in self‐judgement over self‐kindness. The respondent reflections associated with self‐judgement were associated with different aspects of self‐concept including how other's might perceive the person with endometriosis (social self), how the person viewed themselves (personal self) and the perception the respondent had towards their body (physical self) (Dar et al.  2021 ). The self‐judgement identified in the current sample echoes findings from prior research where individuals with endometriosis have reported feelings of inadequacy, inferiority and a pervasive feeling of falling short in comparison to individuals without endometriosis (Cole et al. 2021 ; Facchin et al.  2017 ; Márki et al.  2022 ). Consistent with prior research (Bień et al.  2020 ), the negative self‐judgement noted in the current sample appears to be connected to a belief that a deviation from heteronormative sociocultural norms and expectations (e.g., role changes, fertility concerns, sexual function) reduces the person with endometriosis' value as an individual, partner, friend or employee. Furthermore, a perception of deviating from expected norms may potentially be reinforced by the noted tendency to adopt a comparative evaluation to others living without endometriosis, which was frequently connected to negative evaluations regarding the personal self (e.g., seeing self as inadequate, self‐blame), the physical self (e.g., negative perception of bodily appearance and functionality) and the social self (e.g., seeing self as a burden to others) (Moradi et al.  2014 ; Cole et al. 2021 ). Exploration of self‐judgement reflections also indicated a tendency for respondents to negate their own needs, through barriers associated with self‐advocacy, lack of prioritisation of personal needs and limiting their engagement in self‐care activities. Respondents reported feeling defective, inadequate or unworthy of engaging in self‐care or suggested forms of medical management, further highlighting the influence of endometriosis‐related experiences of the sense of personal, physical and social self. Negating personal needs may result in individuals with endometriosis attempting to mask their pain and distress and adopting to struggle in silence and isolation, particularly if the individual perceives themselves to be a burden, fears negative evaluation, misunderstanding, rejection or abandonment from others (Cole et al. 2021 ). Although the responses were skewed towards self‐judgement, adopting the positive counterpart of self‐kindness allowed some participants to acknowledge and accept the cyclical changes associated with endometriosis, to acknowledge their own needs and view themselves as strong and resilient in response to the adversity that accompanies their endometriosis experiences. The responses obtained within the realm of self‐kindness highlight the importance of reducing the sense of self‐blame and criticalness and emphasising the importance of self‐acceptance for individuals living with endometriosis, particularly in terms of altered abilities, activities that are within the individual's control, and trusting their own knowledge of their body. This suggestion is consistent with the findings of Sayer‐Jones and Sherman ( 2023 ), who reported that some individuals with endometriosis were able to see their own bodies as a healer and teacher by appreciating the body's strength and resilience and adopting a sense of acceptance. Like the greater level of self‐judgement noted, the reflections of the current sample also contained a greater number of references to self‐isolation compared to common humanity. Respondents reported feeling silenced, isolated from others, judged and dismissed, and difficulty advocating for themselves, across a variety of settings. Consistent with the findings of Culley et al. ( 2013 ), the social self was found to be adversely impacted, with reflections citing lowered engagement in life roles, personal relationships, friendships and occupational settings. A sense of isolation was connected to feelings of loneliness due to the limited ability to connect with other individuals with endometriosis. Respondents cited avoidance of sexual intimacy due to impaired body image, potential rejection and sexual pain. The fear of rejection appears to add to the sense of isolation, limiting the individual's opportunity to engage with support networks, potentially resulting in negative predictive thinking, self‐silencing and perceived hopelessness. Isolation, rather than a sense of common humanity, was evident in reflections indicating a sense of being feeling alone in managing endometriosis‐related symptoms, with limited access to support options. Feelings of isolation were connected to reflections noting a lack of treatment options and evidence‐based resources that focused on non‐pain‐related endometriosis symptoms, a lack of community support, and a limited sense of shared responsibility between the individual and their personal, social or treatment networks. For example, respondents indicated that painful sexual experiences were left unacknowledged by healthcare professionals, resulting in the avoidance of intimacy, suppression of needs, self‐blame and hopelessness, which may act to reinforce actions of self‐isolation and difficulty connecting to a sense of common humanity. Although reflections highlighting a sense of common humanity in the current sample were lower in frequency than their negative counterpart isolation, it could be suggested that facilitating a connection to a community of shared experiences and understanding (e.g., endometriosis support groups) may foster a greater sense of belonging and connection to mitigate against feelings of isolation (Márki et al.  2022 ). Respondents who expressed a sense of common humanity noted connecting with other individuals living with endometriosis via support groups as a means of addressing feelings of loneliness, guilt and self‐blame. Connecting to others was associated with an ability to view endometriosis‐related symptoms and difficulties as part of the disease itself rather than a failing on the part of the individual. Increasing a sense of common humanity, through the provision of opportunities to connect with others who share similar lived experiences may mitigate some of the negative implications to self‐concept such as self‐criticalness and blame, comparison to others without endometriosis and feelings of defectiveness and inadequacy (Gooding, Stedmon, and Crix  2020 ). The findings of the current study also found a greater level of overidentification than mindfulness. Difficulty differentiating the disease from the broader self was reflected in seeing the whole self as a burden. Overidentification appeared to be associated with distress perpetuating strategies such as emotional suppression and cognitive distortions (i.e., mind reading, discounting the positive) which serve to maintain negative emotions (i.e., anxiety, fear, sadness, guilt, loneliness). Respondents indicated that emotional suppression was preferable to seeking support due to fear of negative evaluation. Increasing engagement in mindfulness may assist individuals with endometriosis to separate endometriosis from their overall identity and self‐concept and facilitate an ability to connect to the present moment rather than attempting to suppress difficult thoughts or emotions. Furthermore, enhancing an individual's ability to observe and experience negative thoughts or emotions, through mindfulness, may mitigate against the distress associated with negative self‐appraisals (Neff  2003 ). Although the current study reinforces the understanding of the impact of endometriosis on an individual's self‐concept, and the specific components of self‐compassion that may act to perpetuate or counter these impacts, several study limitations are acknowledged. Firstly, the sample comprised predominantly heterosexual, cis‐gendered, partnered respondents, meaning that respondent accounts pertaining to relationship or sexual difficulties may not be reflective of the impacts experienced by gender or sexually diverse individuals involved in casual sexual relationships. Secondly, the survey did not request information pertaining to race and was limited to English speaking participants; therefore, the researchers are unable to comment on the role of cultural or racial factors in the current findings and how these may influence self‐concept. Thirdly, although the thematic template analysis was conducted using a large sample size, the use of an open‐ended question does not allow for the level of response clarification or richness that may be obtained from in‐depth qualitative interviews. A fourth limitation is the self‐reported nature of endometriosis diagnosis in the current sample, although published findings highlight high levels of agreement between self‐reported endometriosis symptoms and impacts and medical records (Shafrir et al.  2021 ). Finally, patient and public consultation did not occur in the generation of the open‐ended questions although members of the research team work in therapeutic settings with individuals with endometriosis or have a lived experience of endometriosis. Future research should concentrate on exploring the specific implications of endometriosis experiences on self‐concept in gender and sexually diverse communities, particularly as emerging research has indicated that perceptions of femininity may influence body acceptance (Richburg and Stewart  2022 ). Further research is required to determine whether the alterations to self‐concept noted in the current sample are likely to be influenced by racial or cultural factors or other levels of intersectionality. Exploration of self‐concept via in‐depth semi structured interviews with people with endometriosis is also recommended to gain further understanding of alterations and potential buffers to these changes to self‐concept. However, despite these study limitations, the current research does highlight a critical need to address self‐concept for individuals diagnosed with endometriosis. In support of previous research, several challenges were noted that influence self‐concept including difficulty engaging in value‐guided activities and decisions, body image disturbances, fertility distress and disruptions to future parenting plans, relationship and intimacy distress, a sense of defectiveness or inadequacy, self‐blame and isolation. Minimisation and invalidation may contribute to alterations in self‐concept if the individual is not able to access an alternative viewpoint and understanding from their person support network, a community with shared understanding (e.g., endometriosis support groups), or knowledgeable and informed medical or allied health professionals (Nicola et al.  2021 ). The current study extends the findings of invalidation and minimisation beyond that of endometriosis‐related pain alone and indicates that these negative processes occur across the personal, physical and social domains of self. These experiences may emphasise negative perpetuating cognitions and reinforce isolation, suppression of personal needs and self‐silencing. Having a deeper understanding of the implications for self‐concept, and how the unique components of self‐compassion are linked to these, is important for informing nursing and allied healthcare interventions for endometriosis. Compassion‐based interventions, such as self‐compassion, may serve to increase a sense of common humanity and develop a kind and compassionate view towards self in times of suffering for individuals living with endometriosis (Van Niekerk, Johnstone, and Matthewson  2022 ; Sirois and Rowse  2016 ). As self‐compassion has been found to improve HRQoL in endometriosis and other persistent health conditions (Skinner and Kuijer  2024 ), psychological well‐being and endometriosis‐related symptom distress (Van Niekerk, Johnstone, and Matthewson  2022 ) and sexual well‐being (Sullivan‐Myers et al.  2023 ), its inclusion in compassion‐focused interventions for endometriosis is strengthened by the current findings relating to self‐concept. Based on the current themes identified, all three components of self‐compassion hold relevance for mitigating the changes to self‐concept associated with endometriosis. The component of self‐kindness may assist with the identified themes of feelings of inadequacy, self‐blame, negating physical and emotional needs and comparing oneself negatively to others. The component of common humanity may facilitate an increased sense of connection to others, creating a sense of connection rather than disconnection when faced with the physical, personal, and social aspects of endometriosis (Neff  2011 ), buffering against the identified themes of loneliness, withdrawal from others and a perception of being a burden. The third component of self‐compassion, mindfulness, offers a mechanism for individuals with endometriosis to acknowledge their experiences without negatively judging or critiquing themselves (Neff  2011 ), providing a mechanism to counter the identified themes of being consumed by negative endometriosis‐related thoughts, emotions and sensations or attempting to cope through emotional suppression or numbing.

In conclusion, although most qualitative statements by the respondents in the current sample reflected the negative counterpart of each domain of self‐compassion, statements that did reflect the positive counterpart suggest that self‐compassion may have utility in countering negative alterations to self‐concept for individuals with endometriosis. Self‐compassion strategies that focus on reducing critical self‐judgements and blame, increase a sense of connection and shared experience with others, reduce feelings of inadequacy and defectiveness and increase capacity to acknowledge the personal, physical and social aspects of the disease that lies outside the individual's direct personal control are recommended for nurses and allied healthcare professionals engaged in the care of individuals with endometriosis. Self‐compassion techniques aimed at increasing practical acceptance, rather than avoidance or minimisation, are also recommended for addressing the alterations to self‐concept identified (Gooding, Stedmon, and Crix  2020 ; Van Niekerk, Johnstone, and Matthewson  2022 ).

The peer review history for this article is available at https://www.webofscience.com/api/gateway/wos/peer‐review/10.1111/jan.16645 .

‘C’—There is a statistician on the author team: Associate Professor Subhadra Evans (Author 2) is an expert in qualitative data analyses and was involved in the initial data review and decision regarding the analytical approach and in the qualitative analyses described in the submitted manuscript. ‘D’—The author(s) affirm that the methods used in the data analyses are suitably applied to their data within their study design and context, and the statistical findings have been implemented and interpreted correctly. ‘E’—The author(s) agrees to take responsibility for ensuring that the choice of statistical approach is appropriate and is conducted and interpreted correctly as a condition to submit to the Journal.

Endometriosis is a progressive chronic inflammatory disease, characterised by high levels of oestrogen, leading to the growth of endometrial‐like tissue in areas such as the ovaries, fallopian tubes and pelvic organs, and may result in infertility and disability (Rowe et al.  2021 ). Medical and surgical management alone may not be sufficient to address the recurrent physical symptoms, social implications and psychological consequences that are noted in individuals diagnosed with endometriosis (Van Niekerk, Johnstone, and Matthewson  2022 ). Although the physical and emotional aspects of endometriosis are frequently discussed in the literature, the influence of endometriosis in potentially shaping a person's self‐concept is limited (Moore, Cogan, and Williams  2023 ).

Leesa Van Niekerk declares the following potential conflicts of interest with respect to the research, authorship and/or publication of this article: Leesa Van Niekerk is a member of the Clinical Advisory Board for Endometriosis Australia. Endometriosis Australia did not provide any financial contributions for this research. Leesa Van Niekerk is a member of the National Endometriosis Clinical and Scientific Trials (NECST) Network Steering Committee. The NECST Network did not provide any financial contributions for this research. No conflict of interest has been declared by Kristi Mazalin and Subhadra Evans.

Figure S1. Descriptive theoretical framework.