The Impact of Migraine vs. Endometriosis on Self-Esteem, Disease Causality Orientation and Stigma Perceptions in a German Sample of Cis-Women

Chronic pain conditions such as migraine and endometriosis affect millions worldwide and predominantly people born female. This online survey examined their psychological impact by comparing selfesteem, disease causality orientation (CO), stigma, and impairment among migraine patients (n=127), endometriosis patients (n=82), and controls without either condition (n=88). Both patient groups reported significantly lower self-esteem than controls. Controls were more likely to attribute symptoms to chance or illness rather than personal weakness. In both conditions, internalized stigma exceeded experienced stigma, and leisure-time impairment exceeded work-related impairment. Findings underscore the importance of integrating psychological interventions into chronic pain management. Chronic diseases significantly affect various aspects of daily life, including work and social environments. Conditions associated with chronic episodes of pain, such as migraine or endometriosis, often lead to fatigue, difficulty concentrating, and reduced cognitive function, resulting in decreased productivity and performance (Cohen et al., Citation2021). Both chronic pain conditions have in common that people designated female at birth are disproportionately affected. On average, womenFootnote1 with endometriosis report approximately 4.3 to 5.5 days per month of pelvic or endometriosis-related pain, while women with migraine report about 5.5 monthly migraine days (Raffaelli et al., Citation2021). Physical limitations due to pain can prevent individuals from performing tasks at work (Gulseren & Kelloway, Citation2021), leading to potential role or even career changes. Chronic pain can lead to social withdrawal and isolation, as individuals may avoid activities they once enjoyed or feel incapable of participating in social events (Smith, Citation2017) or recreational and daily activities (Blyth et al., Citation2001). Moreover, individuals with endometriosis or migraine may also face stigma within medical settings (Sims et al., Citation2021), where their symptoms are sometimes minimized, misinterpreted, or not taken seriously, which can delay diagnosis and appropriate treatment (Armour et al., Citation2020, Shapiro et al., Citation2024). This adds another layer of burden to the affected individuals, beyond the physical and social challenges of living with pain. In this online study, we explore the relationship between disease diagnosis of endometriosis or migraine, stigma perceptions, symptom causality orientation and self-esteem in a sample of women in Germany. Stigmatization in Chronic Pain Conditions Stigma refers to the negative attitudes, beliefs, and behaviors directed toward individuals or groups based on perceived differences, such as chronic health conditions (Goffman, Citation1963). This social phenomenon often leads to discrimination and social exclusion (Rodin et al., Citation1989). In the context of chronic pain conditions—such as endometriosis and migraine—stigma can be examined both through stigmatizing behaviors by others (enacted public stigma) and through the affected individuals’ perception of being stigmatized (perceived public stigma) (De Ruddere & Craig, Citation2016). Research has shown that individuals with endometriosis or migraine often perceive public stigma, which can undermine their self-worth, negatively impact their mental health and overall well-being, and foster self-stigmatization (Korkmaz et al., Citation2019; Perugino et al., Citation2022; Zubair et al., Citation2021). Such stigma is not limited to psychological consequences; it also affects multiple life domains. People living with chronic pain frequently report strained social relationships due to feeling misunderstood by relatives, partners, and friends. Their professional lives and everyday functioning are similarly affected, as they struggle with managing their condition under social pressure and skepticism (Holloway et al., Citation2007; Perugino et al., Citation2022). As an example found for migraine, stigma itself has been identified as a significant contributor to disability, independent of symptom severity (Basoglu Koseahmet et al., Citation2022). In the case of endometriosis, stigmatization has been linked to diagnostic delay and delayed access to treatment, further exacerbating patient outcomes (Karşidağ et al., Citation2019, Kocas et al., Citation2023). More broadly, experiences or even the expectation of negative social reactions to chronic pain are often internalized, shaping individuals’ self-concept and reinforcing self-stigma (Waugh et al., Citation2014). Understanding both perceived public stigma and internalized stigma in chronic pain conditions is essential for developing effective structural and psychosocial support mechanisms (Parikh et al., Citation2021). A deeper understanding of perceived public stigma and self-stigma in endometriosis and migraine will help to promote adequate structural support. Psychological dimensions such as causality orientations might be affected by both stigmatization and disease, contributing to persistent stress and disruptions in daily life. Causality Orientations Causality orientations (Deci & Ryan, Citation1985), which are part of the self-determination theory (Ryan & Deci, Citation2000), describe an individual’s motivational patterns and beliefs about their ability to cause change. There are three types of causality orientations: autonomy, controlled, and impersonal. In sport and learning environments, an autonomous causality orientation is advantageous because it fosters self-determined motivation, persistence, and engagement. Studies have shown that such autonomy can be enhanced situationally through supportive contexts or priming (Levesque & Pelletier, Citation2003), though trait-level changes likely require sustained, long-term interventions (Rose et al., Citation2001). In contrast, within disease management, the opposite pattern may be adaptive—it can be beneficial not to attribute every symptom or difficulty solely to oneself, as excessive self-causation may increase guilt or self-blame rather than promote effective coping. Individuals with chronic diseases often feel responsible for their chronic disease symptoms (autonomous orientation) due to an unconscious, negative attribution process (Camp et al., Citation2002), instead of attributing the symptoms to the chronic disease (controlled orientation) or even perceiving that the symptom is occurring by pure unlucky coincidence (impersonal orientation). In relation to disease management, coping and self-acceptance, it might be of value for patients to learn that the symptoms and impairments of their diseases are not caused by themselves as individual (autonomous causality orientation) but rather originate from the disease condition that is attached to them (controlled orientation). These orientations affect how individuals perceive and interact with their environment (Hagger & Hamilton, Citation2021). While autonomy orientation, which involves an internal locus of causality and intrinsic motivation, is consistently associated with autonomous motivation and adaptive functioning, the empirical evidence for its relation to outcomes such as self-esteem is inconsistent (Hagger & Hamilton, Citation2021) and sometimes non-significant (Uruthirapathy & Dyke, Citation2022). Therefore, it is important to further investigate the relationship between causality orientations and self-esteem. In this study, causality orientation is applied to the topic of perceived symptom causality. In this study, causality orientation is applied to the topic of perceived symptom causality. Both endometriosis and migraine are chronic, often invisible, and not fully understood conditions (Al-Hassany et al., Citation2020; Wettstein et al., Citation2024). Their etiology is complex, involving genetic, hormonal, neurological, and environmental components—but these are not always well communicated to patients or society. This makes causal attributions especially important and potentially problematic. When patients attribute their symptoms to psychological or personal weakness (e.g., stress, overreacting, “not being strong enough”), they may be less likely to seek medical help or may delay seeking care, contributing to diagnostic delays—especially common in endometriosis (Geller et al., Citation2025; Hudelist et al., Citation2012). Causal beliefs affect how patients communicate with clinicians. A mismatch between the patient’s and the provider’s understanding of the illness (e.g., autonomous: “I have a neurological disorder” vs. impersonal: “It’s just stress”) eroding trust and satisfaction with care in endometriosis (As-Sanie et al., Citation2019) and migraine (Shapiro et al., Citation2025), which is still dismissed by providers as “not serious.” We will explore in this study, if there are different tendencies of symptom causality orientation in individuals with chronic diseases vs. healthy individuals. Differences in disease causality orientation can, in consequence, be related to differences in the individual’s self-esteem. Self-Esteem Self-esteem is a person’s overall sense of self-worth or personal value. It reflects an individual’s attitude toward themselves, ranging from a high regard to self-doubt or a feeling of inadequacy (Rosenberg, Citation1965). Self-esteem influences a wide range of health behaviors, as it plays a crucial role in how individuals perceive themselves and their ability to make positive health choices (Miller & Downey, Citation1999). Behaviors like mental health practices and regularity of medication intake are influenced by self-esteem (Ogden & Sidhu, Citation2006). It is therefore not only an important factor of general well-being but has a direct impact on the future health decisions of individuals. The illnesses with chronic pain entail ongoing physical discomfort and functional limitations, which can erode an individual’s self-esteem by challenging their sense of control and competence (Dysvik et al., Citation2005). Additionally, when people are stigmatized by others due to their illnesses, this experienced stigma can have an impact on self-stigmatization (Goffman, Citation1963). If self-stigmatized people then in turn attribute their disease symptoms to themselves instead of to the disease, this can have a negative impact on their self-esteem as well. Because the latter relation can be targeted with health communication interventions, its impact should be measured (Niveau et al., Citation2021). In this study we will evaluate stigmatization experiences of women with endometriosis and women with migraine. We will then compare self-esteem, causality orientations and working absenteeism with a control group of women without those conditions. Hypotheses Stigma Hypothesis Hypothesis 1: We expect both endometriosis patients and migraine patients to report perceived public stigma and self-stigma. RQ 1: We will test exploratively if one of the two patient groups perceived higher public stigma and/or higher self-stigma. Causality Orientation Hypothesis Because chronic pain is recurrent, often invisible, and lacks a clear external cause such as infection or injury, individuals are more likely to search for internal explanations and develop personal meaning around their condition (Declercq, Citation2025). This tendency to attribute symptoms to one’s own body, behavior, or self can enhance autonomous orientation and reduce impersonal orientation, in contrast to acute or situational illnesses. Hypothesis 2: We expect that people with chronic diseases indicate higher disease related autonomous orientation and lower impersonal orientation compared to the control group. RQ2: Related to the disease related causality orientation, we will explore further differences between all three groups in all three subscales. Self-Esteem Hypothesis Endometriosis or migraine as chronic pain conditions undermine self-esteem by reducing perceived control and competence, a process intensified by experienced public stigma and self-blame through self-stigmatization. Hypothesis 3: Comparing individuals with endometriosis vs. with migraine vs. without any of the conditions, we expect self-esteem to be lower in the patient groups compared to the control group. RQ3: We will explore if one of the two patient groups have lower self-esteem compared to the other patient group.

Sample An a priori power analysis was conducted using G*Power (F tests—ANOVA: fixed effects, special, main effects and interactions) with an assumed medium effect size (f = 0.30), α = .05, power (1–β) = .95, numerator df = 10, and six groups, which yielded a required total sample size of N = 281. Participants in the present study were recruited via call to participate on social media platforms (Facebook, Instagram) and the platform Survey Circle, which is an exchange platform for online surveys and participants by snowball sampling. A survey invitation was sent to Facebook support groups for migraine or endometriosis. A total of n = 297 women participated in the online survey. The sample consists of n = 127 women with a self-reported migraine diagnosis, n = 82 women with a self-reported endometriosis diagnosis and n = 88 control group participants, women without any of the two chronic pain conditions. Participants with two diagnoses (n = 26) were randomly assigned to one of the two conditions, being asked either for their migraine or their endometriosis disease perception. Participants who did not receive a formal diagnosis but reported symptoms consistent with migraine (n = 26) or endometriosis (n = 14) were not included in any of the three groups. Within the control group, participants were shown either the enacted stigma scale for endometriosis or migraine based on randomized allocation. Analyses for the constructs except enacted stigma will include the entire control group without further subdivisions. The age range of the total sample was 18 to 68 years, with a mean age of M = 37.6 (SD = 12.6). In the endometriosis group, 79.3% reported having a regular job, in the group having migraine, 76.4% reported working. To compare the endometriosis, migraine and control group, the inclusion criteria required participants to be female and over 16 years of age, while exclusion criteria included being male and being not fluent in German. Participants were predominantly from Germany. Due to privacy concerns in the snowball sampling procedure, we did not collect any data about socio-economic status, education, or federal state of residency. All participants provided informed consent, and the study was conducted according to the Declaration of Helsinki. Measurements Sociodemographic Information Sociodemographics included age, gender, country of residence and symptom status, which was assessed with the question: “Do you have symptoms that might indicate any of the following conditions?” The response options were (1) Migraine, (2) Endometriosis, (3) No, or (4) Yes, both. Subsequently, participants who selected migraine, endometriosis, or both were asked about their diagnosis: “You just selected that you have symptoms of the disease migraine. Do you also have a diagnosis confirmed by medical professionals?” Based on these two questions, participants were assigned to one of the three groups according to their diagnosis status (endometriosis vs. migraine vs. none). Participants who indicated experiencing symptoms, but no diagnosis were excluded from the sample. Self-Esteem After implementing an attention check that asked basic information about one of the two chronic pain conditions, all participants filled out the Rosenberg Self-Esteem Scale (RSES, Rosenberg, Citation1965). The scale includes 10 items (e.g., “I feel that I have a number of good qualities”), on a 4-point scale from “Completely disagree” to “Completely agree.” The scale demonstrated excellent internal consistency, with a Cronbach’s alpha of .92. Higher values represent higher self-esteem. Symptom-Related Causality Orientations In the Causality Orientation Scale (Scherhorn et al., Citation1999), three dimensions are distinguished: autonomous, controlled, and impersonal orientation. The original scale was adapted into a shortened version, where participants engaged in eight situational vignettes by assigning a general health symptom to the most relevant cause. For each symptom (e.g., “feeling physically unwell for a long time”), four options were given: autonomous orientation (e.g., “I’m emotionally exhausted”), controlled orientation (e.g., “I have an iron deficiency”), impersonal orientation (e.g., “I overworked”), and an “other” option to allow participants to provide alternative causes or avoid responding. Out of these items, three sum scores were calculated, one for each causality orientation. This way, it was possible to estimate how many symptoms were interpreted in autonomous vs. controlled vs. impersonal causality of all participants. Stigma All scales were derived from the Stigma Scale for Chronic Illnesses (SSCI). The original 24-item scale, developed by Rao et al. (Citation2009), includes two subscales: internalized (SSCI-I) and experienced (SSCI-E) stigma (Young et al., Citation2013). This scale allows quantifying the frequency of internalized stigma (SSCI-I) and experienced public stigma (SSCI-E), while higher values represent higher frequency of stigmatization (Rao et al., Citation2009). Participants answered the two scales on stigmatization; SSCI-I (e.g., “I feel excluded”) and SSCI-E (e.g., “People are unfriendly”) on a five-point Likert scale from “Never” to “Always.” Higher values represent higher internalized and experienced stigma. Consistency was excellent for SSCI-E (a =.92), and good for SSCI-I (a = .88). People in the control groups were asked to state their agreement with stigmatizing statements in 10 items on a 5-point likert scale (e.g., “I would avoid looking at people with migraine/with endometriosis”; Young et al., Citation2013). Due to low internal consistency (Cronbach’s a = .55), results about enacted stigmatization are not reported in this study and both sub-groups are treated as one asymptomatic/healthy control group in all remaining analyses. Working and Freetime Impairment To explore the impact of chronic illnesses on the working and private lives of affected individuals, a shortened version of the Work Productivity and Activity Impairment Questionnaire was used (Zhang et al., Citation2010). This questionnaire measures the effects on work productivity and daily tasks by assessing hours of missed work, perceived work impairment, productivity loss, and impairment in daily activities (Fourquet et al., Citation2011). The perceived work and leisure time impairment was collected on 10-point likert scales (1—Health problems did not affect my work/my daily activities; 10—Health problems completely distracted me from my work/my daily activities). We excluded participants from the work productivity analysis that indicated they did not work within the last 10 days. Procedure At the beginning of the questionnaire—after a welcome and information on data protection and anonymity—the descriptive data was requested. After a random assignment to one of the two disease conditions for the participants in the control groups, participants were then asked in general terms whether they were familiar with the respective disease before reading a general knowledge text on migraine or endometriosis. This intended to generate a comparable starting level for all participants. The texts were taken from the website “https://www.gesundheitsinformation.de/,” which presents understandable and evidence-based information on diseases for the general population (iQWiG, Citation2023a, Citation2023b). Building on the respective text, the attention checks then followed in the form of a knowledge test. The aim is to check whether all participants are paying attention and have read the information text on the disease in full. Four possible answers were given to the information contained in the text (e.g., “Migraine attacks can be accompanied by nausea and vomiting” or „The main symptom of endometriosis is abdominal pain”). In order to pass the attention check, the option containing incorrect information had to be selected. After the attention check, the RSE-Scale, stigma experiences and questions about work- and free time impairments were posed. displays a procedural overview, as well as participant information for the three quasi-experimental conditions.

The perceived stigmatization results compare both groups with chronic pain conditions using a t-test. The sum scores for causality orientations were analyzed with a MANOVA, using the groups (endometriosis, migraine, control) as independent variable and the sum scores for the three causality orientations as dependent variables. Regarding self-esteem, a one-way ANOVA compared the endometriosis, migraine and control groups’ results. For all analyses, missing data were handled using listwise deletion, removing participants with missing values from the analysis. Descriptive Results on Impairment For both perceived impairment in leisure time (M(SD)Endo = 5.45 (2.7); M(SD)Migraine = 5.88 (2.8)) and working hours (M(SD)Endo = 4.19 (2.9); M(SD)Migraine = 4.23(2.8)), the ratings tended to cluster around the midpoint of the scale. There were no statistically significant differences between disease groups. shows, that both groups with chronic pain conditions perceive their impairment in leisure time to be slightly higher than in productivity times. Stigmatization Hypothesis Due to low internal consistency, results about enacted stigmatization collected in the control groups are not interpreted. For perceived stigma in the chronic pain conditions, we expected that both participants with migraine and endometriosis would report of internalized and experienced stigmatization. Therefore, we calculated a one-sample t-test to test against the lowest scale point for both scales. Both internalized (M [95%-CI] = 2.45 [2.34; 2.56]) and experienced (M [95%-CI] = 1.79 [1.70;1.89]) stigma perceptions were significantly higher than the lowest scale point. Means and 95%-Confidence Intervals for both groups in stigmatization perceptions can be seen in . Experienced stigma was significantly lower than internalized stigma in both migraine (t(126) = 11.96, p < .001, Mdiff = 0.62) and endometriosis groups (t(81) = 11.47, p < .001, Mdiff = 0.73) as paired-sample t-tests revealed. Within the two stigma perception scales, there were neither significant differences between participants with endometriosis vs. migraine for internalized stigma, t(207) = −0.06, p = .95, nor for experienced stigma, t(207) = −1.20, p = .23. Internalized and experienced stigma are correlated, r (207) = .73, p < .001. Causality Orientation Hypothesis In disease related causality orientations, we expected people with chronic diseases to indicate higher disease related autonomous orientation and lower impersonal orientation compared to the control group. shows the three survey groups and means in the three subscales. To analyze the three variables, a multivariate analysis of variance (MANOVA) was used. The dependent variables autonomous orientation, controlled orientation, and impersonal orientation were each measured as sum scores ranging from 0 to 13. The results indicated a statistically significant difference between the groups on the combined dependent variables, Pillai’s Trace = .12, F(6, 586) = 6.34, p < .001. Follow-up univariate ANOVAs were conducted to explore the effects of group membership (control, endometriosis, migraine) on each of the dependent variables separately. For autonomous orientation, the effect of the group was not statistically significant, F(2, 294) = 2.55, p = .079, suggesting that the groups did not differ in terms of their autonomous orientation. For controlled orientation, there was a statistically significant effect of group, F(3, 293) = 5.57, p < .001, η2 = .05, indicating that the groups differed significantly in their controlled orientation scores. Tukey’s Honestly Significant Difference (HSD) test was used to explore pairwise differences between groups. The comparison between the Endometriosis group and the Control group revealed a significant difference, Mdiff = −0.75, 95% CI [−1.41, −0.08], p = .025. This indicates that individuals in the endometriosis group scored significantly lower on controlled orientation than those in the control group. The migraine group had, as well, lower values on the controlled orientation scale than the control group, Mdiff = −1.02, 95% CI [−1.63, −0.42], p < .001. The comparison between the Migraine group and the Endometriosis group did not show a significant difference, Mdiff = −0.28, 95% CI [−0.90, 0.34], p = .540. Similarly, for impersonal orientation, there was a statistically significant effect of group, F(2, 294) = 9.60, p < .001, demonstrating significant differences in impersonal orientation scores between the groups. Post-hoc comparisons were conducted using Tukey’s Honestly Significant Difference (HSD) test to examine pairwise differences between groups. The results highlight that while there are no significant differences between the endometriosis and control group in terms of impersonal orientation (Mdiff = −.25, 95% CI [−0.85, 0.35], p = .592), the migraine group scores significantly lower than both the control and endometriosis groups (migraine-control Mdiff = −.95, 95% CI [−1.49, −.41], p < .001; migraine-endometriosis Mdiff = −.70, 95% CI [−1.25, −.15], p = .009). Self-Esteem Hypothesis As the final hypothesis test, a one-way ANOVA was conducted to examine the effect of disease condition (endometriosis, migraine, control) on the Rosenberg Self-Esteem Scale (RSES) scores. The results indicated a significant effect of the group on RSES scores, F(2, 294) = 5.37, p = .005. This suggests that self-esteem levels differ significantly among the groups. Post-hoc comparisons were conducted using Tukey’s Honestly Significant Difference (HSD). The comparison between the Endometriosis group and the Control group revealed a significant difference, Mdiff = −.33, 95% CI [-.58, −.08], p = .006. Similarly, the comparison between the Migraine group and the Control group also showed a significant difference, Mdiff = −0.25, 95% CI [−0.47, −0.02], p = .029. The differences in self-esteem between both chronic pain diseases indicated no significant differences, Mdiff = 0.08, 95% CI [−0.15, 0.31], p = .679. shows the results in a rain cloud plot. In the online Supplement, we show a mediation model, exploring the correlations between disease groups, causality orientations and self-esteem.

The results of this survey reveal several key findings regarding the impact of chronic pain conditions (in this case endometriosis or migraine) on various psychological outcomes. Even though we found the hypothesized reports of internal and experienced stigma (H1) in both endometriosis and migraine groups, there were no differences between these groups (RQ1). Participants reported higher internalized stigma compared to experienced stigma. These results might occur due to several reasons. One possible interpretation could be that experienced stigma is a question of memory and self-stigma is a question of current self-evaluation; therefore, only experienced stigma might be underestimated due to memory loss. Another possible interpretation is that each instance of stigmatization and disadvantage interacts with a complex constellation of demographic, psychological, and relational factors that may function as risk or protective mechanisms in the development of internalized stigma (Nguyen et al., Citation2024). The implications, however, are equal: As experienced stigmatization—intended or unintended—is correlated with the patient’s self-stigma, healthcare workers should be offered advanced training in communication with patients presenting symptoms of chronic pain conditions. Regarding causality orientations, we found no convincing pattern of results to support H2. While in general, controlled and impersonal orientations for disease symptoms are more often chosen than autonomous orientations in all groups, migraine patients score lowest on impersonal orientations and the control group scored highest on controlled orientations. In future studies, we need to understand if (migraine) patients learned a different interpretation style by their disease progressions. Therefore, long-term studies are urgently needed to elaborate on these psychological outcomes of chronic pain conditions such as endometriosis or migraine. Evaluating if tailored interventions, such as priming-based interventions (Levesque & Pelletier, Citation2003), can change these causality orientations in short and long terms may be a promising future research opportunity to improve both symptom management and decrease self-stigmatization (Rose et al., Citation2001). The lack of group differences in autonomous orientation (interpreting symptoms as personal weakness) might reflect a broader interpretation of symptoms, reducing its influence. Last but not least, the results show a relation between chronic pain conditions and self-esteem scores (H3), as both the endometriosis and migraine participants had lower self-esteem compared to the control group (RQ3). These findings underscore the impact of chronic conditions on psychological outcomes, highlighting specific areas where individuals with chronic conditions may experience unique challenges compared to those without such conditions. The literature acknowledges options to prevent or decrease this impact on self-esteem: Initial points of contact outside the medical system—such as school counselors, psychosocial services, or health navigators—can offer early support and guidance prior to diagnosis, especially for adolescents or individuals with limited access to healthcare (in endometriosis: Kalfas et al., Citation2022; in migraine: Underwood et al., Citation2023). Further educating diagnosed patients about their condition and validating their experiences can improve self-esteem and confidence. This could help counteract feelings of helplessness that contribute to low self-esteem and increase the demand of healthcare services. For this study, a few but important limitations need to be discussed. Asking women who identify as women, from Western educated industrialized democratic countries means that perceived stigmatization will be rather low compared to every other subgroup of people designated female at birth (Muthukrishna et al., Citation2020). This means that the impact of stigmatization experiences on experienced and internalized stigma might be higher in other target groups (Kane et al., Citation2019). In addition, due to snowballing procedures (Marcus et al., Citation2017) selection bias and social desirability could impact the results. We tried to minimize the later by collecting as little sociodemographic data as possible, thereby increasing participants’ sense of anonymity (Zickar & Keith, Citation2023). Second, the groups consist of individuals who self-report having been diagnosed with the respective diseases vs. those with no symptoms or diagnosis at all. In this regard, we have to assume the accuracy of the self-reported information, as we were not able to formally verify the diagnoses. Future studies could conduct sampling directly in specialized clinics for these conditions to ensure that only individuals currently receiving treatment for these diagnoses are included. Further, even though the diagnosis vs. asymptomatic distinction guarantees the presence vs. absence of endometriosis or migraine, we cannot exclude the possibility that participants (in all groups) have other underlying chronic diseases. Replications need to address and control for the question of other underlying conditions that might influence causality orientations and self-esteem. However, even if other underlying chronic conditions were included in the control group, this would probably result in the estimated effects being rather underestimated than overestimated. Third, due to the highly anonymized questionnaire, we cannot estimate the impact of proxy variables like education or social norms in workplaces of blue vs. white collar vs. school or university. Future studies measuring the impact of stigmatization on self-esteem and causality orientations need to shed light on these relationships by using sampling techniques like panel providers or research participant platforms. The last limitation concerns the low internal consistency of the enacted stigmatization scale. Given that item responses were generally very low, floor effects may have restricted variance and thereby reduced the scale’s reliability. In future studies concerning diseases that affect women, asking also women about their enacted stigmatization, future researchers might rely on other, more nuanced scales so that differences in minimal stigmatization can be measurable. Despite these limitations, our findings offer five key recommendations for improving health interventions in the context of endometriosis and migraine management. Integrating Psychological Coping Strategies Participants with endometriosis and migraine may benefit from psychological coping interventions that support self-esteem and self-efficacy alongside physiological medical treatment. For example, cognitive-behavioral therapy (CBT) and mindfulness-based stress reduction (MBSR) programs have been shown to help patients not only manage pain perception, but to reduce anxiety, and improve overall well-being (Morley et al., Citation2008). These approaches may be particularly relevant given the significantly lower self-esteem scores observed in both clinical groups in our study. For instance, CBT has demonstrated efficacy in reducing headache frequency, migraine-related disability (e.g., MIDAS scores), and improving overall well-being in individuals with migraine (Harris et al., Citation2015). Integrating such strategies into standard care could help mitigate the psychological burden of chronic pain and enhance patients’ sense of control and well‑being. Reducing Enacted and Internalized Stigma As self-stigmatization was related to experienced public stigmatization in this study, two recommendations can be made from this observation: Preventing enacted public stigma is crucial, and the first step is to address public stigma early to protect patient well-being. Healthcare providers should receive training to recognize and address stigma in patient interactions (Liboon Aranas et al., Citation2023). For example, implementing simulation-based communication workshops for gynecologists and primary care physicians can improve their ability to avoid dismissive language, and provide clear guidance on symptom management. Large-scale educational campaigns—such as those led by advocacy groups for endometriosis or migraine—should highlight the biological basis of the disease, counter myths about pain tolerance, and promote empathy (for endometriosis: Reinhardt & Eitze, Citation2025). Social media campaigns featuring patient narratives, medical expert testimonials, and myth-busting content could help shift public perceptions and foster a more supportive environment (for migraine: Goadsby et al., Citation2023; for endometriosis: Le Busque & Mellish, Citation2023). Second, patient-centered interventions may focus on preventing or treating internalized stigma, preventing self-doubt and reluctance to seek care for migraine or endometriosis. Support groups, peer mentorship programs, and online patient communities (e.g., Endometriosis Foundation support groups) provide safe spaces where patients share experiences, receive validation, and build self-advocacy skills (for endometriosis: Burke et al., Citation2024; for migraine: Casas-Limón et al., Citation2024). Further Recommendations: Breaking the Link Between Stigma and Health Behaviors Even our study does not include health behaviors, a theoretical and empirical relation is given between feeling stigmatized and self-advocating for an adequate treatment for symptoms of chronic pain conditions such as endometriosis or migraine (Corrigan & Rao, Citation2012; Goffman, Citation1963). Public and clinical interventions should address the ways stigma discourages patients from seeking timely care or adhering to treatment (Dockery et al., Citation2015). For instance, awareness campaigns in schools and workplaces about menstrual health and chronic pelvic pain could help normalize discussions about endometriosis (Eitze & Reinhardt, Citation2025), encouraging individuals to seek medical attention earlier rather than enduring prolonged suffering in silence. In addition, self-esteem-focused interventions should be integrated into pelvic pain management programs. Therapeutic approaches such as acceptance and commitment therapy (ACT) or expressive writing exercises could help patients develop a stronger sense of self-worth despite their condition (Brooks et al., Citation2021). Addressing these barriers through both psychological and structural interventions is essential for improving clinical outcomes and the overall quality of life for individuals living with endometriosis and chronic pelvic pain. Although the recommendations made here strongly emphasize endometriosis, both chronic pain conditions require further research and systematic literature reviews to identify the most effective interventions to reduce stigmatization and its consequences.

In both endometriosis and migraine, representing two chronic pain conditions that disproportionately affect people born female, evidence for experienced and internalized stigma can be found. Also, self-esteem is lower in people with those chronic pain conditions. As both internalized stigma and lower self-esteem is known to be related to less successful disease management, this has to be considered as a potential barrier in diagnosis, treatment and self-management of endometriosis and migraine. Potential support to overcome those barriers could include integrating patient education in coping and resilience toward stigma and in educational interventions to decrease enacted stigma in healthcare and the general population. Generative AI Statement The authors used ChatGPT (v. 4.0) for language consultation (checking for grammar and precision), as well as to generate an R code commentary to make the code replicable and increase understanding of the procedure. Supplemental material Supplemental Material Download MS Word (77.8 KB)Supplemental MaterialDisclosure Statement No potential conflict of interest was reported by the author(s). Data Availability Statement Data and analysis scripts are available on the Open Science Framework: https://osf.io/hcs72/overview Notes 1 In this paper, we mostly use the term women instead of people designated female at birth to improve readability, as our sample consisted exclusively of cisgender women. This choice is made solely for stylistic clarity and does not challenge the scientific evidence that people designated female at birth is the precise and inclusive term reflecting the complete spectrum of sex and gender.

- Al-Hassany, L., Haas, J., Piccininni, M., Kurth, T., Maassen Van Den Brink, A., & Rohmann, J. L. (2020). Giving researchers a headache—Sex and gender differences in migraine. Frontiers in Neurology, 11, 549038. https://doi.org/10.3389/fneur.2020.549038 - Armour, M., Sinclair, J., Ng, C. H. M., Hyman, M. S., Lawson, K., Smith, C. A., & Abbott, J. (2020). Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: An Australian survey. Scientific Reports, 10(1), 16253. https://doi.org/10.1038/s41598-020-73389-2 - As-Sanie, S., Black, R., Giudice, L. C., Gray Valbrun, T., Gupta, J., Jones, B., Laufer, M. R., Milspaw, A. T., Missmer, S. A., Norman, A., Taylor, R. N., Wallace, K., Williams, Z., Yong, P. J., & Nebel, R. A. (2019). Assessing research gaps and unmet needs in endometriosis. American Journal of Obstetrics and Gynecology, 221(2), 86–94. https://doi.org/10.1016/j.ajog.2019.02.033 - Basoglu Koseahmet, F., Polat, B., Gozubatik-Celik, R. G., Baytekin, I., Soylu, M. G., Ceyhan Dirican, A., & Ozturk, M. (2022). An invisible cause of disability: Stigma in migraine and epilepsy. Neurological Sciences, 43(6), 3831–3838. https://doi.org/10.1007/s10072-022-05888-1 - Blyth, F. M., March, L. M., Brnabic, A. J., Jorm, L. R., Williamson, M., & Cousins, M. J. (2001). Chronic pain in Australia: A prevalence study. Pain, 89(2-3), 127–134. https://doi.org/10.1016/S0304-3959(00)00355-9 - Brooks, T., Sharp, R., Evans, S., Baranoff, J., & Esterman, A. (2021). Psychological interventions for women with persistent pelvic pain: A survey of mental health clinicians. Journal of Multidisciplinary Healthcare, 14, 1725–1740. https://doi.org/10.2147/JMDH.S313109 - Burke, E., Di Renna, T., Mustafa, N., Ginter, C., Carter, W., Corkery, C., Sheffe, S., Wilson, R., Lemos, N., & Bosma, R. (2024). Empowered management for pelvic pain: The experiences of women with persistent pelvic pain participating in an online self-directed self-management program while they wait for interprofessional care. Women’s Health, 20. https://doi.org/10.1177/17455057231224960 - Camp, D. L., Finlay, W. M. L., & Lyons, E. (2002). Is low self-esteem an inevitable consequence of stigma? An example from women with chronic mental health problems. Social Science & Medicine, 55(5), 823–834. https://doi.org/10.1016/S0277-9536(01)00205-2 - Casas-Limón, J., Quintas, S., López-Bravo, A., Alpuente, A., Andrés-López, A., Castro-Sánchez, M. V., Membrilla, J. A., Morales-Hernández, C., González-García, N., & Irimia, P. (2024). Unravelling migraine stigma: A comprehensive review of its impact and strategies for change. Journal of Clinical Medicine, 13(17), 5222. https://doi.org/10.3390/jcm13175222 - Cohen, S. P., Vase, L., & Hooten, W. M. (2021). Chronic pain: An update on burden, best practices, and new advances. The Lancet, 397(10289), 2082–2097. https://doi.org/10.1016/S0140-6736(21)00393-7 - Corrigan, P. W., & Rao, D. (2012). On the self-stigma of mental illness: Stages, disclosure, and strategies for change. Canadian Journal of Psychiatry, 57(8), 464–469. https://doi.org/10.1177/070674371205700804 - De Ruddere, L., & Craig, K. D. (2016). Understanding stigma and chronic pain: A-state-of-the-art review. Pain, 157(8), 1607–1610. https://doi.org/10.1097/j.pain.0000000000000512 - Deci, E. L., & Ryan, R. M. (1985). The general causality orientations scale: Self-determination in personality. Journal of Research in Personality, 19(2), 109–134. https://doi.org/10.1016/0092-6566(85)90023-6 - Declercq, J. (2025). It’s not written all over my face: Constructing chronic pain as invisible in pain clinic consultations and interviews. The Clinical Journal of Pain, 41(3), e1273. https://doi.org/10.1097/AJP.0000000000001273 - Dockery, L., Jeffery, D., Schauman, O., Williams, P., Farrelly, S., Bonnington, O., Gabbidon, J., Lassman, F., Szmukler, G., Thornicroft, G., Clement, S., & MIRIAD Study Group. (2015). Stigma- and non-stigma-related treatment barriers to mental healthcare reported by service users and caregivers. Psychiatry Research, 228(3), 612–619. https://doi.org/10.1016/j.psychres.2015.05.044 - Dysvik, E., Natvig, G. K., Eikeland, O.-J., & Lindstrøm, T. C. (2005). Coping with chronic pain. International Journal of Nursing Studies, 42(3), 297–305. https://doi.org/10.1016/j.ijnurstu.2004.06.009 - Eitze, S., & Reinhardt, A. (2025). Keep period pain a secret? Expanding the theory of planned behavior with endometriosis knowledge and menstrual stigma to explain women’s intentions to talk about menstrual discomfort. Health Psychology, 44(11), 1028–1038. https://doi.org/10.1037/hea0001502 - Fourquet, J., Báez, L., Figueroa, M., Iriarte, R. I., & Flores, I. (2011). Quantification of the impact of endometriosis symptoms on health-related quality of life and work productivity. Fertility and Sterility, 96(1), 107–112. https://doi.org/10.1016/j.fertnstert.2011.04.095 - Geller, S., Levy, S., & Avitsur, R. (2025). Examining the relationship between endometriosis and psychological distress: Roles of cultural background, body image and self-criticism in women’s health. Health Psychology and Behavioral Medicine, 13(1), 2511980. https://doi.org/10.1080/21642850.2025.2511980 - Goadsby, P., Ruiz De La Torre, E., Constantin, L., & Amand, C. (2023). Social media listening and digital profiling study of people with headache and migraine: Retrospective infodemiology study. Journal of Medical Internet Research, 25, e40461. https://doi.org/10.2196/40461 - Goffman, E. (1963). Stigma: The management of spoiled identity. Penguin. - Gulseren, D., & Kelloway, E. K. (2021). Working through the pain: The chronic pain experience of full-time employees. Occupational Health Science, 5(1-2), 69–93. https://doi.org/10.1007/s41542-020-00078-x - Hagger, M. S., & Hamilton, K. (2021). General causality orientations in self-determination theory: Meta-analysis and test of a process model. European Journal of Personality, 35(5), 710–735. https://doi.org/10.1177/0890207020962330 - Harris, P., Loveman, E., Clegg, A., Easton, S., & Berry, N. (2015). Systematic review of cognitive behavioural therapy for the management of headaches and migraines in adults. British Journal of Pain, 9(4), 213–224. https://doi.org/10.1177/2049463715578291 - Holloway, I., Sofaer-Bennett, B., & Walker, J. (2007). The stigmatisation of people with chronic back pain. Disability and Rehabilitation, 29(18), 1456–1464. https://doi.org/10.1080/09638280601107260 - Hudelist, G., Fritzer, N., Thomas, A., Niehues, C., Oppelt, P., Haas, D., Tammaa, A., & Salzer, H. (2012). Diagnostic delay for endometriosis in Austria and Germany: Causes and possible consequences. Human Reproduction (Oxford, England), 27(12), 3412–3416. https://doi.org/10.1093/humrep/des316 - iQWiG. (2023a). Endometriose | symptome, diagnose & behandlung. gesundheitsinformation.de. https://www.gesundheitsinformation.de/endometriose.html(open in a new window) - iQWiG. (2023b). Migräne. gesundheitsinformation.de. https://www.gesundheitsinformation.de/migraene.html(open in a new window) - Kalfas, M., Chisari, C., & Windgassen, S. (2022). Psychosocial factors associated with pain and health‐related quality of life in Endometriosis: A systematic review. European Journal of Pain (London, England), 26(9), 1827–1848. https://doi.org/10.1002/ejp.2006 - Kane, J. C., Elafros, M. A., Murray, S. M., Mitchell, E. M. H., Augustinavicius, J. L., Causevic, S., & Baral, S. D. (2019). A scoping review of health-related stigma outcomes for high-burden diseases in low- and middle-income countries. BMC Medicine, 17(1), 17. https://doi.org/10.1186/s12916-019-1250-8 - Karşidağ, S., Çinar, N., Şahin, Ş., Kotevoğlu, N., & Florentina Ateş, M. (2019). Validation and reliability study of the Turkish version of the Neuroquality of Life (Neuro-QoL)—Stigma scale in neurological disorders. Turkish Journal of Medical Sciences 49(3), 789–794. https://doi.org/10.3906/sag-1811-50 - Kocas, H. D., Rubin, L. R., & Lobel, M. (2023). Stigma and mental health in endometriosis. European Journal of Obstetrics & Gynecology and Reproductive Biology: X, 19, 100228. https://doi.org/10.1016/j.eurox.2023.100228 - Korkmaz, S., Kazgan, A., Korucu, T., Gönen, M., Yilmaz, M. Z., & Atmaca, M. (2019). Psychiatric symptoms in migraine patients and their attitudes towards psychological support on stigmatization. Journal of Clinical Neuroscience, 62, 180–183. https://doi.org/10.1016/j.jocn.2018.11.035 - Le Busque, B., & Mellish, S. (2023). Endometriosis awareness month on social media: A content analysis of images and captions on Instagram. Women, 3(1), 82–94. https://doi.org/10.3390/women3010007 - Levesque, C., & Pelletier, L. G. (2003). On the investigation of primed and chronic autonomous and heteronomous motivational orientations. Personality & Social Psychology Bulletin, 29(12), 1570–1584. https://doi.org/10.1177/0146167203256877 - Liboon Aranas, L., Alam, K., Gyawali, P., & Alam, R. M. (2023). Drug-resistant tuberculosis stigma among healthcare workers toward the development of a stigma-reduction strategy: A scoping review. Inquiry, 60, 469580231180754. https://doi.org/10.1177/00469580231180754 - Marcus, B., Weigelt, O., Hergert, J., Gurt, J., & Gelléri, P. (2017). The use of snowball sampling for multi source organizational research: Some cause for concern. Personnel Psychology, 70(3), 635–673. https://doi.org/10.1111/peps.12169 - Miller, C. T., & Downey, K. T. (1999). A meta-analysis of heavyweight and self-esteem. Personality and Social Psychology Review, 3(1), 68–84. https://doi.org/10.1207/s15327957pspr0301_4 - Morley, S., Williams, A., & Hussain, S. (2008). Estimating the clinical effectiveness of cognitive behavioural therapy in the clinic: Evaluation of a CBT informed pain management programme. Pain, 137(3), 670–680. https://doi.org/10.1016/j.pain.2008.02.025 - Muthukrishna, M., Bell, A. V., Henrich, J., Curtin, C. M., Gedranovich, A., McInerney, J., & Thue, B. (2020). Beyond Western, Educated, Industrial, Rich, and Democratic (WEIRD) psychology: Measuring and mapping scales of cultural and psychological distance. Psychological Science, 31(6), 678–701. https://doi.org/10.1177/0956797620916782 - Nguyen, J., Anderson, J., & Pepping, C. A. (2024). A systematic review and research agenda of internalized sexual stigma in sexual minority individuals: Evidence from longitudinal and intervention studies. Clinical Psychology Review, 108, 102376. https://doi.org/10.1016/j.cpr.2023.102376 - Niveau, N., New, B., & Beaudoin, M. (2021). Self-esteem interventions in adults—A Systematic Review and Meta-analysis. Journal of Research in Personality, 94, 104131. https://doi.org/10.1016/j.jrp.2021.104131 - Ogden, J., & Sidhu, S. (2006). Adherence, behavior change, and visualization: A qualitative study of the experiences of taking an obesity medication. Journal of Psychosomatic Research, 61(4), 545–552. https://doi.org/10.1016/j.jpsychores.2006.04.017 - Parikh, S. K., Kempner, J., & Young, W. B. (2021). Stigma and migraine: Developing effective interventions. Current Pain and Headache Reports, 25(11), 75. https://doi.org/10.1007/s11916-021-00982-z - Perugino, F., De Angelis, V., Pompili, M., & Martelletti, P. (2022). Stigma and chronic pain. Pain and Therapy, 11(4), 1085–1094. https://doi.org/10.1007/s40122-022-00418-5 - Raffaelli, B., Overeem, L. H., Mecklenburg, J., Hofacker, M. D., Knoth, H., Nowak, C. P., Neeb, L., Ebert, A. D., Sehouli, J., Mechsner, S., & Reuter, U. (2021). Plasma calcitonin gene‐related peptide (CGRP) in migraine and endometriosis during the menstrual cycle. Annals of Clinical and Translational Neurology, 8(6), 1251–1259. https://doi.org/10.1002/acn3.51360 - Rao, D., Choi, S. W., Victorson, D., Bode, R., Peterman, A., Heinemann, A., & Cella, D. (2009). Measuring stigma across neurological conditions: The development of the stigma scale for chronic illness (SSCI). Quality of Life Research, 18(5), 585–595. https://doi.org/10.1007/s11136-009-9475-1 - Reinhardt, A., & Eitze, S. (2025). Breaking the endometriosis silence: A social norm approach to reducing menstrual stigma and policy resistance among young adults. Psychology & Health, 40(6), 881–903. https://doi.org/10.1080/08870446.2023.2277838 - Rodin, M., Price, J., Sanchez, F., & McElligot, S. (1989). Derogation, exclusion, and unfair treatment of persons with social flaws: Controllability of stigma and the attribution of prejudice. Personality and Social Psychology Bulletin, 15(3), 439–451. https://doi.org/10.1177/0146167289153013 - Rose, E. A., Markland, D., & Parfitt, G. (2001). The development and initial validation of the Exercise Causality Orientations Scale. Journal of Sports Sciences, 19(6), 445–462. https://doi.org/10.1080/026404101300149393 - Rosenberg, M. (1965). Society and the adolescent self-image. Princeton University Press. https://doi.org/10.1515/9781400876136 - Ryan, R. M., & Deci, E. L. (2000). Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. The American Psychologist, 55(1), 68–78. https://doi.org/10.1037/0003-066X.55.1.68 - Scherhorn, G., Haas, H., Hellenthal, F., & Seibold, S. (1999). Kausalitätsorientierungen. Zusammenstellung sozialwissenschaftlicher Items und Skalen (ZIS). https://doi.org/10.6102/ZIS173 - Scherhorn, G., Neuner, M., & Raab, G. (1998). Der Indikator zur Erhebung der Kausalitätsorientierungen (IKO). Hogrefe. https://doi.org/10.6102/zis173 - Shapiro, R. E., Muenzel, E. J., Nicholson, R. A., Zagar, A. J. L., Reed, M., Buse, D. C., Hutchinson, S., Ashina, S., Pearlman, E. M., & Lipton, R. B. (2025). Factors and reasons associated with hesitating to seek care for migraine: Results of the OVERCOME (US) study. Neurology and Therapy, 14(1), 135–155. https://doi.org/10.1007/s40120-024-00668-9 - Shapiro, R. E., Nicholson, R. A., Seng, E. K., Buse, D. C., Reed, M. L., Zagar, A. J., Ashina, S., Muenzel, E. J., Hutchinson, S., Pearlman, E. M., & Lipton, R. B. (2024). Migraine-related stigma and its relationship to disability, interictal burden, and quality of life: Results of the OVERCOME (US) study. Neurology, 102(3), e208074. https://doi.org/10.1212/WNL.0000000000208074 - Sims, O. T., Gupta, J., Missmer, S. A., & Aninye, I. O. (2021). Stigma and endometriosis: A brief overview and recommendations to improve psychosocial well-being and diagnostic delay. International Journal of Environmental Research and Public Health, 18(15), 8210. https://doi.org/10.3390/ijerph18158210 - Smith, T. (2017). “On their own”: Social isolation, loneliness and chronic musculoskeletal pain in older adults. Quality in Ageing and Older Adults, 18(2), 87–92. https://doi.org/10.1108/QAOA-03-2017-0010 - Underwood, M., Achana, F., Carnes, D., Eldridge, S., Ellard, D. R., Griffiths, F., Haywood, K., Hee, S. W., Higgins, H., Mistry, D., Mistry, H., Newton, S., Nichols, V., Norman, C., Padfield, E., Patel, S., Petrou, S., Pincus, T., Potter, R., … Matharu, M. S. (2023). Supportive self-management program for people with chronic headaches and migraine: A randomized controlled trial and economic evaluation. Neurology, 100(13), e1339–e1352. https://doi.org/10.1212/WNL.0000000000201518 - Uruthirapathy, A., & Dyke, L. (2022). The influence of general causality orientations on self-esteem and perceived stress among undergraduate students in women-only colleges. International Journal of Educational Management, 36(5), 766–783. https://doi.org/10.1108/IJEM-05-2021-0179 - Waugh, O. C., Byrne, D. G., & Nicholas, M. K. (2014). Internalized stigma in people living with chronic pain. The Journal of Pain, 15(5), 550.e1–550.e10. https://doi.org/10.1016/j.jpain.2014.02.001 - Wettstein, M., Imesch, P., Witzel, I., & Metzler, J. M. (2024). Evolution of endometriosis research: A comprehensive analysis of research designs and topics over the last 15 years. Journal of Endometriosis and Uterine Disorders, 7, 100076. https://doi.org/10.1016/j.jeud.2024.100076 - Young, W. B., Park, J. E., Tian, I. X., & Kempner, J. (2013). The stigma of migraine. PLoS One, 8(1), e54074. https://doi.org/10.1371/journal.pone.0054074 - Zhang, W., Bansback, N., Boonen, A., Young, A., Singh, A., & Anis, A. H. (2010). Validity of the work productivity and activity impairment questionnaire—General health version in patients with rheumatoid arthritis. Arthritis Research & Therapy, 12(5), R177. https://doi.org/10.1186/ar3141 - Zickar, M. J., & Keith, M. G. (2023). Innovations in sampling: Improving the appropriateness and quality of samples in organizational research. Annual Review of Organizational Psychology and Organizational Behavior, 10(1), 315–337. https://doi.org/10.1146/annurev-orgpsych-120920-052946 - Zubair, A. S., Sico, J. J., & Kuruvilla, D. E. (2021). Presence of stigma in the treatment of patients with migraine among neurologists. Pain Medicine, 22(9), 2135–2138. https://doi.org/10.1093/pm/pnaa465