Endo Belly: A Mixed Methods Exploration of Body Image, Disordered Eating, and Psychopathology in Endometriosis

This study received ethics approval by the Flinders University Human Research Ethics Committee (Project number 5585).

All participants provided informed consent.

A total of 179 people voluntarily participated in the study (“An exploration of endometriosis, body image, and eating disorder risk”) in response to information on social media support group pages for endometriosis. Most participants identified as female (97.2%) and heterosexual (77.8%) and the mean age was 30.47 years (SD = 6.57). Most participants identified as white (86.0%) and a third resided in South Australia (34.6%). The mean body mass index (BMI) was 27.27 (SD = 6.87), range 16.66 to 52.08. See supporting materials for complete demographic information. Participants completed the following measures, in the order presented here: This 12‐item measure is designed to measure body image flexibility (Sandoz et al.  2013 ). Items are rated on a 7‐point Likert scale and are reverse scored and summed. Thus, higher scores indicate greater body image flexibility. The scale has good internal consistency (Cronbach's alpha = 0.93) and test‐retest reliability, is correlated with disordered eating, body image, and general psychopathology, and differentiates between eating disorder, dieting, ‘at risk’ and comparison groups (Pellizzer et al.  2018 ). Internal consistency in the current study was Cronbach's alpha = 0.94, Omega = 0.95. The global score from the brief EDE‐Q7 assesses eating disorder psychopathology over the previous 28 days (Grilo et al.  2015 ) using a 7‐point Likert scale. There have been several modified versions of the original Eating Disorder Examination‐Questionnaire (EDE‐Q; Fairburn and Beglin  2008 ) proposed given problems with replicating the original factor structure and psychometric properties (Grilo et al.  2015 ; Machado et al.  2020 ). The EDE‐Q7 structure has been supported several times using Confirmatory Factor Analysis (CFA) and has robust psychometric properties including good internal consistency and correlations with other measures of eating disorder psychopathology in addition to the original EDE‐Q and other modified versions (Machado et al.  2020 ). Like the original measure, the EDE‐Q7 global score is scored by summing and averaging subscales (Dietary Restraint, Shape/Weight Overevaluation, and Body Dissatisfaction) and higher scores indicate greater eating disorder psychopathology. A score greater than or equal to 3.50 is considered to be the best fitting clinical cut‐off score, capturing 87% of true cases and only 15% of false cases (Wade et al.  2021 ). Alternatively, the more permissible cut‐off score of greater than or equal to 2.50 captures 100% of true cases and 63% of false cases (Wade et al.  2021 ). Unfortunately, an error on the questionnaire meant that one item (regarding dietary rules) was not displayed to participants. Thus, only the Shape/Weight and Body Dissatisfaction subscales could be calculated and are used for correlation analyses. The 6 items are presented, including the two available Dietary Restraint items, to demonstrate the proportion of the sample exceeding clinical cutoffs on each item. Internal consistency in the current study (Cronbach's alpha) was Shape/Weight = 0.91 and Body Dissatisfaction = 0.84; comparable to Grilo et al. ( 2015 ), where internal consistency for the subscales ranged from 0.89 to 0.91. Note, Omega could not be calculated in the present study as subscales were less than 3 items. The DASS short form (Lovibond and Lovibond  1995 ) is a 21 item measure of negative affect. Items are rated on a 4‐point Likert scale and divided into three subscales: Depression, Anxiety, and Stress. Scores on each subscale are summed such that higher scores indicate greater negative affect (Lovibond and Lovibond  1995 ). Subscale scores can be categorised as normal, mild, moderate, severe, or extremely severe. The scale has good internal consistency (Cronbach's alphas of: 0.97 Depression, 0.92 Anxiety, and 0.95 Stress) and is correlated with other measures of depression and anxiety, and discriminates well between clinical and nonclinical samples (Antony et al.  1998 ). Internal consistency in the current study was comparable. Cronbach's alpha: Depression = 0.90, Anxiety = 0.86, Stress = 0.86, and Omega: Depression = 0.91, Anxiety = 0.86, Stress = 0.86. The FSCRS (Gilbert et al.  2004 ) is comprised of three subscales to measure self‐criticism and self‐reassurance. For the present study, only the Inadequate Self subscale was chosen to reduce participant burden. The Inadequate Self subscale assesses self‐criticism using 9 items rated on a 5‐point Likert scale which are summed such that higher scores indicate greater self‐criticism (Gilbert et al.  2004 ). The subscale has good internal consistency (Cronbach's alpha 0.90) and is correlated with other measures of self‐criticism and depression (Gilbert et al.  2004 ). Internal consistency of the Inadequate Self subscale in the current study was excellent (Cronbach's alpha = 0.95, Omega = 0.95). Participants were asked two open‐ended questions. “How does endometriosis impact how you feel about your body?” and “How does endometriosis impact your eating?”. They were presented towards the end of the survey, after the quantitative measures, with an unlimited response length. They were optional to answer, however, most participants ( n  = 146) completed them and provided rich, detailed responses. Following approval by the Flinders University Human Research Ethics Committee (Project number 5585), participants were recruited online via Facebook. Individual Facebook pages of endometriosis support groups and organisations were contacted via private message and invited to share the advertisement of the study with their members/followers. The inclusion criteria included having endometriosis, age of 18 or more years, and living in Australia. To reduce participant burden, shorter measures were chosen where possible. A total of 266 potential participants clicked a link to an online Qualtrics questionnaire which first presented an information sheet followed by a consent form. Of these, 180 participants consented to participate, 179 (67%) commenced the questionnaire, and 173 further consented to their deidentified data being uploaded to the Open Science Framework. At the end of the questionnaire participants had the option of providing their email address to receive a summary of the findings. Quantitative analyses were conducted with IBM Statistical Package for the Social Sciences, Version 28 (IBM Corp  2023 ) and qualitative coding was performed using NVivo (QSR International Pty Ltd  2022 ). Pearson correlations were performed to evaluate the relationship between each measure. Qualitative items were analysed using reflexive thematic analysis, using the six phases as described by Braun and Clarke ( 2022 ). Analysis was conducted through a critical realist epistemological framework, to acknowledge the influence of language and culture in shaping participants' experiences (Braun and Clarke  2022 ). Authors MP and KR completed the initial phases of data set familiarisation, coding, and generating initial themes independently. Coding followed an inductive, semantic approach, allowing the explicit meaning of participants' responses to be captured rather than following a pre‐existing researcher approach or theory. For later phases, MP and KR worked together to develop and review themes before refining, defining, and naming final themes. Discrepancies were few and where they occurred were resolved through discussion. Author MP is a researcher and clinical psychologist (with a PhD in Clinical Psychology) who has worked mostly with people with eating disorders while KR was a PhD student (clinical psychology) at the time of analysis with expertise in perfectionism and its role in disordered eating. Both are White, cisgender females. MP has lived experience of endometriosis while KR does not. This helped to bring further understanding to the data while also ensuring any possible bias was in check. MP and KR met frequently during the analysis phase to discuss their interpretations and possible biases, with time in between meetings to allow for reflection. Given the nature of the study (questionnaire design), there were no relationships with study participants before or during the study and participants had limited knowledge of researchers beyond titles and contact information provided on the participant information sheet.

Table  1 presents the means, standard deviations, minima, and maxima for all variables. The sample size for each variable varies due to missing data (due to participants leaving the questionnaire at various points). The EDE‐Q7 individual item scores indicate a high level of disordered eating and body image concerns. A modified calculation of the global score, using the two available Dietary Restraint items, in combination with the other complete subscales, indicates the sample is likely to have had a mean EDE‐Q7 global score above the more stringent cut‐off of 3.50 ( M  = 3.74, SD = 1.61). The table demonstrates that for each item, more than half of the sample scored above 3. Furthermore, a large proportion of the sample scored 6 on each individual item (ranging from 25.9% to 37.5%). This sample also had a low level of body image flexibility and a high level of negative affect and self‐criticism. Body image flexibility was lower than the mean in the original Sandoz et al. ( 2013 ) study observed in undergraduate students ( M  = 66.56, SD = 15.11, d  = 1.41 [1.20–1.62]). Mean scores on the DASS21, indicate all three subscales to be in the “Moderate” range. Furthermore, less than 30% of the sample fell in the “normal” range. Therefore, this sample had heightened negative affect and probable underlying mental health disorders. Lastly, this sample demonstrated elevated self‐criticism as compared to the original validation study by Gilbert et al. ( 2004 ) with female undergraduate students ( M  = 16.75, SD = 8.44, d  = 1.54 [1.32–1.77]). All variables were correlated as expected (see Table  2 ). Descriptive statistics for continuous variables. Note: BI‐AAQ, Body Image Acceptance and Action Questionnaire; BMI, Body Mass Index; DASS21, Depression Anxiety and Stress Scales 21; EDE‐Q, Eating Disorder Examination—Questionnaire 7‐Item Short Form. Correlations between body image flexibility, eating disorder psychopathology, negative affect, and self‐criticism. Note: BI‐AAQ, Body Image Acceptance and Action Questionnaire; DASS21 D, Depression subscale; DASS21 A, Anxiety subscale; DASS21 = Depression Anxiety Stress Scales 21; DASS21 S, Stress Scales; EDE‐Q7, Eating Disorder Examination—Questionnaire 7‐Item Short Form; EDE‐Q7 BD, EDE‐Q7 Body Dissatisfaction subscale; EDE‐Q7 S/W, EDE‐Q7 Shape/Weight subscale. p  < 0.001; p < 0.05 Reflexive thematic analysis was performed across both qualitative items, given a high overlap in responses. Thematic analysis produced a final analytic structure of three main themes, and a total of four subthemes, to describe the impact endometriosis has on eating and body image. Each theme is described below, including illustrative quotes. Participants overwhelmingly described a deep disappointment with their body's functioning and appearance. The impact of endometriosis on the body (e.g., pain and bloating, digestive symptoms, fatigue) made participants feel their body was working against them, letting them down, and made it difficult to complete everyday tasks. Furthermore, symptoms such as bloating and difficulties with weight gain and losing weight contributed to body image dissatisfaction, with many participants describing looking pregnant from “endo belly”. Accordingly, this theme gave rise to two specific subthemes. This subtheme encompasses key issues related to body functionality such as feeling significant pain, bloating, the sense that the body is working again the person, not feeling in control of one's own body, and the impact endometriosis has on daily living, such as not having energy to exercise and move the body or the energy to cook to nourish the body. Taken together, these symptoms and experiences further decrease quality of life, impact body image and eating, and make one feel let down by their body. Endometriosis makes me feel that I do not have control of my body. I feel vulnerable to endometriosis due to the physical pain it causes during menstruation and the impact it has on my fertility. I am held hostage by non‐visible symptoms that have a significant impact on my life, this is particularly pertinent when trying to access healthcare as care providers don't believe or acknowledge the extent of symptoms (female, 27 years old, heterosexual, Caucasian). It feels like my body has betrayed me and at times I hate it (female, age not provided, bisexual, Aboriginal or Torres Strait Islander). Endometriosis and its associated pain and other symptoms impact the way I feel about my body in that it can stop me from exercise, sometimes even just longer periods of walking can set off symptoms for me. Which makes things challenging. Sometimes I just feel like me body is faulty, and that its working against me. Although I imagine these thoughts aren't helpful for supporting a positive body image. I hate the way my body looks majority of the time, especially due to bloating (female, 22 years old, heterosexual, Caucasian). I constantly feel nauseous (‘Other’ gender, age not provided, homosexual, Caucasian) Endometriosis makes me feel that I do not have control of my body. I feel vulnerable to endometriosis due to the physical pain it causes during menstruation and the impact it has on my fertility. I am held hostage by non‐visible symptoms that have a significant impact on my life, this is particularly pertinent when trying to access healthcare as care providers don't believe or acknowledge the extent of symptoms (female, 27 years old, heterosexual, Caucasian). It feels like my body has betrayed me and at times I hate it (female, age not provided, bisexual, Aboriginal or Torres Strait Islander). Endometriosis and its associated pain and other symptoms impact the way I feel about my body in that it can stop me from exercise, sometimes even just longer periods of walking can set off symptoms for me. Which makes things challenging. Sometimes I just feel like me body is faulty, and that its working against me. Although I imagine these thoughts aren't helpful for supporting a positive body image. I hate the way my body looks majority of the time, especially due to bloating (female, 22 years old, heterosexual, Caucasian). I constantly feel nauseous (‘Other’ gender, age not provided, homosexual, Caucasian) This subtheme describes the impact endometriosis has on negative body image and feeling dissatisfied and insecure about one's body shape and weight. Participants often mentioned the impact on specific body parts, such as a bloated stomach and looking pregnant, or having “endo belly”. Several participants stated body image dissatisfaction specifically related to scarring from surgery (i.e., laparoscopy). Prolonged bloating, hormonal treatments, and Endo belly has given me permanent extreme stretch marks which have become a major insecurity. I also get Endo belly to the point of looking pregnant for about a week each month and always feel fat because I go into fluid retention (female, 22 years old, heterosexual, Caucasian). Endometriosis makes me bloat so much, and colleagues stare at my stomach presuming that I'm pregnant (female, 46 years old, heterosexual, Caucasian). Negatively [impact on body] especially after surgeries and scars (female, age not provided, heterosexual, Caucasian). Makes me feel fat and gross due to stretch marks, bloating and scarring (female, age not provided, heterosexual, Caucasian). Prolonged bloating, hormonal treatments, and Endo belly has given me permanent extreme stretch marks which have become a major insecurity. I also get Endo belly to the point of looking pregnant for about a week each month and always feel fat because I go into fluid retention (female, 22 years old, heterosexual, Caucasian). Endometriosis makes me bloat so much, and colleagues stare at my stomach presuming that I'm pregnant (female, 46 years old, heterosexual, Caucasian). Negatively [impact on body] especially after surgeries and scars (female, age not provided, heterosexual, Caucasian). Makes me feel fat and gross due to stretch marks, bloating and scarring (female, age not provided, heterosexual, Caucasian). This theme encompasses both the control of food to manage endometriosis and gastrointestinal symptoms (subtheme 1) and disordered eating (subtheme 2). Regardless of the intention, restriction of food intake greatly impacted participants’ quality of life. Furthermore, most participants reporting struggling with food, for one or both of the reasons covered in the below subthemes. Many participants reported restricting their food intake to manage inflammation and symptoms of inflammatory bowel syndrome (IBS), rather than for weight/shape control. This restriction and perceived need to manage food so closely often greatly impacted participants' quality of life such as eating out with friends, enjoyment of food, and feeling stressed by deciding what to eat. I am currently on a gluten and cow's dairy free diet to reduce inflammation. This makes it very limiting for me given I am very social and eating out with friends is important to me (female, 46 years old, heterosexual, Caucasian). It stops from eating what I love knowing it will impact my body in a detrimental way (female, 49 years old, heterosexual, Caucasian). Endo sets off IBS I cant eat too much chocolate or spicy food or eggs or anything with coffee (female, 38 years old, heterosexual, Caucasian). I guess the biggest thing is following the fod‐map diet, I'm a vegan so my diet has become even more restricted. It can be stressful eating out especially with a group. And for the first time in my life cooking can feel like a chore sometimes just due to the constraints of what I can make. It means every meal I am constantly evaluating each ingredient and whether I can eat it and when I have to eat foods that are high in fod‐maps or gluten I feel guilty like I'm not doing my best for my body. I think potentially counting out quantities of ingredients to comply with fod‐map guidelines can feel like it's a slippery slope to obsessing over what I eat (female, age not provided, heterosexual, Caucasian/Asian). I am currently on a gluten and cow's dairy free diet to reduce inflammation. This makes it very limiting for me given I am very social and eating out with friends is important to me (female, 46 years old, heterosexual, Caucasian). It stops from eating what I love knowing it will impact my body in a detrimental way (female, 49 years old, heterosexual, Caucasian). Endo sets off IBS I cant eat too much chocolate or spicy food or eggs or anything with coffee (female, 38 years old, heterosexual, Caucasian). I guess the biggest thing is following the fod‐map diet, I'm a vegan so my diet has become even more restricted. It can be stressful eating out especially with a group. And for the first time in my life cooking can feel like a chore sometimes just due to the constraints of what I can make. It means every meal I am constantly evaluating each ingredient and whether I can eat it and when I have to eat foods that are high in fod‐maps or gluten I feel guilty like I'm not doing my best for my body. I think potentially counting out quantities of ingredients to comply with fod‐map guidelines can feel like it's a slippery slope to obsessing over what I eat (female, age not provided, heterosexual, Caucasian/Asian). Participants often spoke of disordered eating that occurs due to the endometriosis and the impact it has on weight, appearance, mood, and identity, and feeling out of control. This included restriction and undereating, but also binge eating, comfort eating, and overeating, particularly in response to feeling frustrated by endometriosis and its symptoms. Several participants disclosed having an eating disorder or knowing of others who have eating disorders. I know of many people with endometriosis who have developed eating disorders as a way to control their lives in some way (female, age not provided, heterosexual, Caucasian). Losing weight has consumed me. For years I strictly dieted and went to the gym daily (female, 32 years old, heterosexual, Caucasian). Comfort eating… I binge a lot of crap food when I'm sad and then feel guilt about my body (female, 24 years old, heterosexual, Caucasian). I don't think endometriosis impacts how i feel about my body but because of the pain i tend to emotionally eat which then makes me feel bad about my body (female, age not provided, heterosexual, Persian). I know of many people with endometriosis who have developed eating disorders as a way to control their lives in some way (female, age not provided, heterosexual, Caucasian). Losing weight has consumed me. For years I strictly dieted and went to the gym daily (female, 32 years old, heterosexual, Caucasian). Comfort eating… I binge a lot of crap food when I'm sad and then feel guilt about my body (female, 24 years old, heterosexual, Caucasian). I don't think endometriosis impacts how i feel about my body but because of the pain i tend to emotionally eat which then makes me feel bad about my body (female, age not provided, heterosexual, Persian). This theme captures the significant impact endometriosis has on someone's identity, self‐esteem, feeling sexy and feminine, and mood. Mental health was often discussed, for instance feeling anxious or having low mood, in addition to low self‐worth and a changed self‐image. As illustrated in the below quotes, it was not uncommon to describe not feeling sexy, or like a normal woman, and this further exacerbated mental health impacts and distress. Participants also described feeling hopeless and anxious about what the future will look like, due to living with endometriosis. [I feel] self‐conscious and down because of severe stomach bloating – Not sexy. Anxious about eating too much as my gut sticks out. Sad. Failure towards my body's potential reproductive issues. Distressed at the discomfort I feel (female, age not provided, heterosexual, Caucasian). I don't feel like a woman. I don't feel pretty or sensual… just pain and bloating and discomfort (female, 39 years old, heterosexual, Caucasian). … makes me want to change everything about myself (female, age not provided, bisexual, Caucasian). It makes me feel worthless and incapable (female, 27 years old, heterosexual, Indian). Sometimes overwhelming, knowing I will live with this forever. Sometimes inadequate, like I can't offer my partner or friends the future I would want to give them, or be the person I want to be (female, 23 years old, bisexual, Caucasian). Makes me suicidal thinking about being in pain for the rest of my life (female, 24 years old, heterosexual, Caucasian). [I feel] self‐conscious and down because of severe stomach bloating – Not sexy. Anxious about eating too much as my gut sticks out. Sad. Failure towards my body's potential reproductive issues. Distressed at the discomfort I feel (female, age not provided, heterosexual, Caucasian). I don't feel like a woman. I don't feel pretty or sensual… just pain and bloating and discomfort (female, 39 years old, heterosexual, Caucasian). … makes me want to change everything about myself (female, age not provided, bisexual, Caucasian). It makes me feel worthless and incapable (female, 27 years old, heterosexual, Indian). Sometimes overwhelming, knowing I will live with this forever. Sometimes inadequate, like I can't offer my partner or friends the future I would want to give them, or be the person I want to be (female, 23 years old, bisexual, Caucasian). Makes me suicidal thinking about being in pain for the rest of my life (female, 24 years old, heterosexual, Caucasian). Quantitative findings demonstrate a sample of people with endometriosis with high levels of eating disorder psychopathology, negative affect, self‐criticism, and low body image flexibility. The qualitative findings are highly consistent. For instance, eating disorder psychopathology such as the overevaluation of eating, shape and weight, dietary restraint, and binge eating is present in the themes of body disappointment (subtheme body image dissatisfaction) and food as an enemy (disordered eating). The theme of stolen identity and joy relatedly addresses high negative affect and mental health impacts, self‐criticism, and low self‐worth. Low body image flexibility is evident, particularly in the body disappointment theme, as participants demonstrate entrenched body image attitudes, thoughts, and experiences that consequently make them view their body in a negative way. While the quantitative findings demonstrate the prevalence of such concerns, the qualitative findings show how eating disorder psychopathology, body image, self‐criticism, and negative affect present in disorder‐specific ways.

The aim of this study was to explore disordered eating and body image concerns in a sample of individuals with endometriosis. As expected, mean scores demonstrated greater eating disorder psychopathology, negative affect, self‐criticism, and lower body image flexibility for this sample as compared to community norms. Thematic analysis of qualitative responses yielded three main themes, including Body Disappointment, Food as an Enemy, and Stolen Identity and Joy. Themes captured weight, shape, and eating concerns (including restrictive eating and disordered eating) as predicted and additionally described the significant impact endometriosis has one's body functionality, quality of life, and identity. The findings of the present study support previous work demonstrating that individuals with endometriosis have elevated body image concerns (Melis et al.  2015 ; Mills et al.  2023 ; Sullivan‐Myers et al.  2023 ; Van Niekerk et al.  2022 ; Volker and Mills  2022 ). A novel contribution of this study is the inclusion of body image flexibility as a construct of interest. Body image flexibility, an aspect of positive body image and an important protective factor was notably lower than typical mean scores in community samples (Sandoz et al.  2013 ). Another novel contribution of this study was the ability to examine both eating disorder psychopathology and body image in a large sample. Only two studies have examined disordered eating in this population previously, using samples of outpatients with endometriosis (Aupetit et al.  2022 ; Panariello et al.  2023 ). Aupetit et al. ( 2022 ) found between 18.5% and 35.2% of patients met cutoffs on two different screening tools while Panariello et al. ( 2023 ) had only 1 patient met cutoff, however, they excluded anyone with a psychiatric disorder. Given the high overlap between endometriosis and disorders such as depression and anxiety (Pope et al.  2015 ), and the high rate of comorbidity between eating disorders and a range of psychiatric disorders (Udo and Grilo  2019 ), this is problematic and unlikely to be representative of this population. The present study thus was able to examine eating disorder psychopathology using a large sample (and not restricting recruitment to those actively seeking treatment for their condition). A further strength of the present study was the addition of qualitative items to explore how endometriosis impacts both body image and eating. The findings here are comparable to past qualitative studies that have either included or focused on body image (Facchin et al.  2018 ; Moradi et al.  2014 ; Sayer‐Jones and Sherman  2021 ,  2023 ), demonstrating negative body image. This is particularly due to factors such as pain, bloating, scarring, and feeling let down by the body, in addition to the overlap with reduced quality of life and increased negative effects. To our knowledge, however, this is the first qualitative examination of how endometriosis impacts eating. The theme ‘Food as an Enemy” and subtheme disordered eating captured both intentional restricting and undereating that was reported to manage weight gain and body image dissatisfaction, in addition to overeating and binge eating for emotional regulation and in response to restrictive eating. Several participants also explicitly discussed either having an eating disorder or being aware of others with endometriosis experiencing eating disorders. In addition, the other subtheme highlighted the ways participants controlled their eating to manage their disease, often leading to very restricted diets and further impacting quality of life, for instance finding it hard to eat out with friends. Taken together, the findings of the present study highlight a need for routine screening of eating disorders in this population and guidance from qualified professionals regarding dietary changes. For example, the EDE‐Q7 is a short, psychometrically sound self‐report measure that demonstrates high sensitivity in capturing true eating disorder cases (Wade et al.  2021 ) and would be a suitable screening tool for professionals to administer. A recent systematic review of dietary interventions for endometriosis management recommended that while studies demonstrated promising findings for pain reduction, only a small number of studies existed which introduced high heterogeneity and risk of bias (Nirgianakis et al.  2022 ). Guidance from dietitians and gastroenterologists is particularly important given the wide range of information available online and in books regarding dietary advice for endometriosis, much of which is untested and not from reliable sources (e.g. on social media; Adler et al.  2024 ). Furthermore, should a patient score highly on an eating disorder screening measure, referral to a specialist eating disorder service is recommended. The current study should be interpreted in the context of several important limitations. First, while the sample was large and included individuals with endometriosis across Australia, there is sample and self‐selection bias inherent in the methodology. Individuals in social media support groups may have higher rates of mental health challenges, including eating disorders, requiring further support. Although, potentially individuals join such groups for an increased sense of community, connection, and support from others with endometriosis more generally, as has been found in motivations for joining health‐related support groups more broadly (Chung  2014 ). As there was full transparency about the nature of the study, individuals with higher rates of disordered eating and body image concerns may have self‐selected to participate. Second, an error in one item of the EDE‐Q7 meant that only six items were presented to participants and an accurate global score could not be calculated. Fortunately, we were able to examine individual available items to provide an insight into this sample's disordered eating. Future research should seek to replicate findings here with the complete measure. Third, descriptive data regarding endometriosis condition was not included and further work in this area should seek to enquire about symptoms, endometriosis stage, onset and duration, and severity. It should be noted, however, that due to a lengthy delay in diagnosis, it is often difficult to pinpoint onset and duration, and staging is only marginally related to symptoms, severity, and quality of life (As‐Sanie et al.  2019 ). Finally, our sample mostly identified as White, female, and heterosexual. Therefore, future work in this area should seek to recruit a more diverse sample in terms of ethnicity and gender identity to generalise findings. A large proportion of the sample also elected not to disclose their age. We are unsure why this occurred and acknowledge the uncertainty of participant age as a limitation. Given the high prevalence of endometriosis and the impact it has on body image and eating, further work is required in several areas. As the present study is only one of three to examine disordered eating in this population, future work is needed to understand this relationship further, using both community samples and outpatient samples. There should be no exclusion for psychiatric diagnoses given the high rate of comorbidities people with endometriosis experience. In addition to quantitative research, to our knowledge, there is not yet qualitative research exploring the interaction between endometriosis (and other gynaecological conditions such as polycystic ovarian syndrome) and eating disorders. Interviews with individuals with both diagnoses would provide clinically useful insights about how they impact each other in addition to informing assessment and treatment planning. There is also a lack of psychological interventions available for people with endometriosis. A systematic review found only nine studies that evaluated psychological or mind‐body interventions for people with endometriosis (Evans et al.  2019 ). Included studies, which tended to be pilot and preliminary in nature, found promising improvements in pain, anxiety, depression, stress and fatigue, however, none reported on or focused on body image and eating (Evans et al.  2019 ). More recently, a systematic review and meta‐analysis assessed the use of psychological interventions targeting body image in a range of gynaecological disorders, including endometriosis (Pehlivan et al.  2024 ). Pleasingly, most studies reported at least one positive effect and interventions were effective for reducing body image concerns compared to control conditions, with a moderate effect (Pehlivan et al.  2024 ). However, like Evans et al. ( 2019 ), studies were described as having moderate heterogeneity and a high risk of bias (Pehlivan et al.  2024 ). The studies that found the biggest effects on body image used treatment modalities such as Cognitive Behavioural Therapy, Acceptance and Commitment Therapy, and Mindfulness (Pehlivan et al.  2024 ). Therefore, clinicians working in this area are encouraged to review the studies in Pehlivan et al. ( 2024 ) to inform body image intervention. Furthermore, given the high prevalence of both eating disorder psychopathology and body image, clinicians are also directed to body image work included in eating disorder treatment manuals, focusing on concerns such as body checking, body avoidance, comparison, mindreading, and the use of imagery rescripting to process past negative body image experiences (Fairburn  2008 ; Waller et al.  2007 ; Waller et al.  2019 ). Therefore, work on both prevention and intervention approaches for working on body image and disordered eating will be an important pursuit going forward. We conclude that the current study represents an important contribution to the currently scarce literature on the relationship between endometriosis, body image, and disordered eating. Our findings suggest that individuals with endometriosis have elevated body image concerns and disordered eating, in addition to restrictive and extensive changes to eating related to disease management which impact quality of life. Future research is encouraged to further understand this relationship, inform assessment, prevention, and treatment, and give people with endometriosis improved quality of life.

Endometriosis is estimated to affect one in nine females and those who were assigned female at birth by the age of 44 (Rowlands et al.  2021 ). An inflammatory disease that involves the growth of endometrial‐like tissue outside of the uterus in other parts of the body (Koninckx et al.  2021 ), endometriosis can cause significant pain, bloating (often referred to as having “endo belly”), infertility, fatigue, heavy menstrual bleeding, bladder and bowel symptoms, and sexual dysfunction. It can only be definitively diagnosed with laparoscopic surgery by taking a biopsy of suspected tissue (Koninckx et al.  2021 ). Therefore, this paper mostly refers to clinically confirmed or suspected endometriosis. On average, endometriosis remains undiagnosed for 6.7 years, and there is no cure (Nnoaham et al.  2011 ). Treatments aim to reduce the presence of endometriosis and the management of symptoms and include surgery, medications, allied health interventions and complimentary medicine (e.g., acupuncture). It is well‐documented that people with endometriosis often experience poor quality of life and comorbid mental health challenges such as anxiety and depression (Jia et al.  2012 ; Moradi et al.  2014 ; Nnoaham et al.  2011 ; Pope et al.  2015 ; Szypłowska et al.  2023 ). In a multicentre and international study of women presenting for a laparoscopy, Nnoaham et al. ( 2011 ) found that those with endometriosis had significantly worse physical health‐related quality of life, particularly for those with more pain and advanced disease, compared to those without endometriosis. This translated to a significant loss of work productivity and associated costs (Nnoaham et al.  2011 ). Systematic reviews also support an association between endometriosis and impaired health‐related quality of life (Jia et al.  2012 ; Szypłowska et al.  2023 ). Additionally, systematic reviews support a relationship between endometriosis, depression, and anxiety. A prevalence between 9.8% and 98.5% for depressive symptoms and 11.5% to 87.5% for anxiety symptoms have been reported across studies (Szypłowska et al.  2023 ). Geller et al. ( 2021 ) found self‐criticism was correlated with anxiety and depression for people with endometriosis but not for those without endometriosis. Women with endometriosis are more likely to meet the criteria for a psychiatric disorder (56.4%) compared to women without endometriosis (43.6%) and the majority of studies find a reduction in quality of life and psychological wellbeing (Pope et al.  2015 ). Qualitative studies also demonstrate impaired quality of life, health‐related quality of life, and mental health concerns including diagnosable disorders and low self‐esteem (Márki et al.  2022 ; Moradi et al.  2014 ; Roomaney and Kagee  2018 ). Endometriosis also adversely impacts body image: cognitions, behaviours, feelings, and perceptions about the body (Cash  2004 ). Body image includes the related but conceptually different aspects of negative body image and positive body image (Tylka and Wood‐Barcalow  2015 ). Negative body image, including body image dissatisfaction, refers to having a negative relationship with one's body, while positive body image includes feeling love, acceptance, appreciation, gratitude, and flexibility towards the body's appearance and functions (Thompson and Schaefer  2019 ; Tylka and Wood‐Barcalow  2015 ). Given endometriosis has physical appearance impacts, such as scarring from surgery, weight gain and difficulty losing weight, and bloating, it is unsurprising that body image concerns are elevated in this population (higher negative body image and lower positive body image). Accordingly, emerging evidence demonstrates that people with endometriosis have greater levels of body dissatisfaction and lower body appreciation (having favourable attitudes towards one's body and its appearance) and functionality appreciation (respecting what the body is capable of doing), compared to people without endometriosis (Melis et al.  2015 ; Mills et al.  2023 ; Sullivan‐Myers et al.  2023 ; Van Niekerk et al.  2022 ; Volker and Mills  2022 ). Lower body and functionality appreciation is also not surprising given the significant impacts endometriosis has on multiple systems within the body, for example, gastrointestinal symptoms such as diarrhoea, constipation, painful bowel movements and nausea and/or vomiting. Furthermore, the impact of endometriosis on body image further impacts mental health and quality of life. A large longitudinal study found body image concerns predicted greater depressive symptoms, which was mediated by self‐esteem (Pehlivan et al.  2022 ). Another study found more than 80% of individuals with endometriosis had clinically significant levels of body image disturbance and sexual distress which were highly related (Sullivan‐Myers et al.  2023 ). Qualitative research has yielded similar findings. Interviews with 74 patients with endometriosis found that almost all described having negative body image, particularly due to issues such as weight gain from medications and the disease, menopause, and surgical scars (Facchin et al.  2018 ). Similarly, an earlier qualitative study with 35 women with endometriosis found participants reported negative body image related to bloating, scarring, and paleness from endometriosis symptoms (Moradi et al.  2014 ). Across gynaecological conditions more broadly, a scoping review of qualitative research found that body image concerns were widespread, impaired quality of life, and was often not detected or treated in routine clinical care (Sayer‐Jones and Sherman  2021 ). A qualitative study exploring the impact endometriosis has on affective and perceptual aspects of body image identified three key themes (Sayer‐Jones and Sherman  2023 ). Across 40 written narratives, these themes included: 1) “My Body is a Barrier”, describing the burden of endometriosis on the body, low body appreciation, and impact on quality of life, 2) “Needing to Hide Myself”, capturing feeling unattractive leading to shame and hiding away, and 3) “Body as Healer and Teacher”, describing the acceptance of the disease and being able to appreciate the body and its functionality (Sayer‐Jones and Sherman  2023 ). Taken together, the evidence suggests endometriosis has a significant impact on body image which in turn further impairs quality of life and mental health. Limited attention has been paid to the association between endometriosis and disordered eating, despite the critical roles of negative affect (experiencing unpleasant emotions such as depression and anxiety) and body image dissatisfaction as risk factors for disordered eating (Jacobi and Fittig  2010 ), as posited by the dual pathway model and demonstrated in prevention trials with young women (Stice et al.  2017 ). In the general population, eating disorders are estimated to have a global average lifetime prevalence of 8.5% for women and 2.2% for men (Galmiche et al.  2019 ). Eating disorders are serious psychiatric disorders that have substantial physical health impacts and one of the highest mortality rates as compared to other psychiatric disorders (Arcelus et al.  2011 ; Chesney et al.  2014 ) In one of the first studies exploring the connection between endometriosis and disordered eating, Aupetit et al. ( 2022 ) found 19 of 54 (35.2%) patients met screening cut‐off on the SCOFF (Morgan et al.  1999 ), and 10 of 54 (18.5%) produced a score indicating a need to assess further for an eating disorder on the Eating Attitudes Test (EAT‐26; Garner et al.  1982 ). A second recent study assessed eating disorder diagnosis, disordered eating, and emotional eating in 30 outpatients with endometriosis (Panariello et al.  2023 ). However, only one patient (i.e. 1/30 patients) was considered likely to meet a diagnosis for an eating disorder as indicated by total scores on both the Binge Eating Scale (BES; Gormally et al.  1982 ) and the Eating Disorder Examination Questionnaire (EDE‐Q; Fairburn and Beglin  2008 ). A higher body mass index (BMI) and higher levels of pain were associated with greater disordered eating (Panariello et al.  2023 ). The discrepancy in prevalence between the two studies may be due to small sample size and exclusion of anyone with a major psychiatric disorder in the latter study (Panariello et al.  2023 ). Supporting an association between endometriosis and disordered eating is a genetic association study showing that women with endometriosis are more likely than those without to have comorbid eating disorders (Koller et al.  2023 ). To our knowledge, these are the only studies that have specifically examined disordered eating in endometriosis. Further work in the area is required to understand the connection between endometriosis and disordered eating, and the implications this has for diagnosis and treatment. The present study aims to understand whether disordered eating is elevated for people with endometriosis, using both quantitative and qualitative approaches. The selection of variables is in part influenced by the transdiagnostic cognitive behavioural theory of eating disorders which includes the over evaluation of eating, shape and weight and their control (judging oneself in terms of these areas and spending a considerable time on the pursuit of thinness and dietary control), mood intolerance, life events, perfectionism, and core low self‐esteem as contributors to developing an eating disorder (Fairburn et al.  2003 ). The dual pathway model also highlights body dissatisfaction and negative affect as key risk factors for the development of an eating disorder (Stice et al.  2017 ). Selected variables were also informed by the literature based on endometriosis and body image thus far. In the present study, we examine descriptive information of, and associations between, measures of eating disorder psychopathology, body image flexibility (an aspect of positive body image, the ability to experience thoughts about the body [positive, negative, or neutral] in a mindful way without acting upon or changing them), negative affect (depression, anxiety, and stress) and self‐criticism in this population. We also ask open‐ended questions to qualitatively explore how endometriosis impacts both eating and body image; to our knowledge, this study is the first to qualitatively investigate the impact of endometriosis on eating and one of only a few to quantitatively explore this. The use of mixed methods will provide important insights into both the prevalence of disordered eating as well as how it uniquely presented in this population. Based on a review of the literature and the transdiagnostic theory of eating disorders presented, we anticipated both quantitative and qualitative findings would demonstrate a high prevalence of disordered eating, body image concerns, negative affect, and self‐criticism, and low body image flexibility.

The authors declare no conflicts of interest.

Supporting information.