Beyond pain: employment status affects endometriosis-associated quality of life - a cross-sectional study

Background: Endometriosis is a chronic condition affecting physical health, emotional well-being, and socioeconomic stability. While pain is a well-recognized determinant of health-related quality of life (HR-QoL), the role of pain experience over employment status remains underexplored. Objective: To determine among women with endometriosis whether employment status independently contributes to HR-QoL, beyond clinical symptoms. Methods: This cross-sectional study was conducted at the University Hospital of Geneva. Women with a confirmed diagnosis of endometriosis were included. Employment status was categorized as full-time employment (>80%), part-time employment (≤80%), voluntary unemployment, and involuntary unemployment. HR-QoL was measured using the Endometriosis Health Profile-30 (EHP-30). Results: A total of 324 patients were included (mean age 32 ± 7.2 years); 78.2% had deep infiltrating endometriosis, and 34.5% reported prior surgery. Regarding employment, 63.2% were employed (51.5% full-time, 11.7% part-time), while 36.7% were unemployed, including 26.2% by choice. Full-time and part-time employment were linked to lower EHP-30 pain scores, with part-time employment showing a stronger association (β = −34.48, 95% CI: −58.00 to −10.88, p = 0.006) than full-time employment (β = −20.57, 95% CI: −40.70 to −0.43, p = 0.046). Unemployed women actively seeking work exhibited worse HR-QoL, particularly in social support (β = 34.95, 95% CI: 1.89 to 70.80, p = 0.048) and overall HR-QoL burden (β = 168.27, 95% CI: 30.60 to 205.91, p = 0.019). Conclusion: Employment status is an independent predictor of HR-QoL in women with endometriosis. Beyond pain, professional identity and social integration play key roles in endometriosis burden.

Endometriosis is a common inflammatory disease that affects women of reproductive age [Citation1]. While the condition is primarily characterized by cardinal pelvic pain symptoms—dysmenorrhea, dyspareunia, and nonmenstrual pelvic pain—as well as infertility, extensive evidence demonstrates its profound impact on various aspects of women’s lives, including daily activities, personal and sexual relationships, social interactions, and psychological well-being. Multiple studies have highlighted the substantial burden of endometriosis on both physical and mental Health-Related Quality of Life (HR-QoL) [Citation2–5]. Systematic profiling of HR-QoL to assess the personal, relational, and societal burden of the disease has been recommended by multiple society consensus statements and has been proposed as a core outcome in a recent consensus [Citation3]. Although the relationship between pain and endometriosis HR-QoL appears to be linear [Citation6], additional variables may influence the perceived burden of the disease, as well as patient satisfaction, treatment compliance, and responsiveness. In 2011, Fourquet et al. [Citation7] sought to quantify the impact of endometriosis symptoms on HR-QoL and work productivity, concluding that affected women experience significant disability in both physical and mental health domains. Notably, they reported an average loss of approximately one working day per week during periods of severe symptoms. Socioeconomic, demographic, lifestyle factors, and allostatic load—the physiological cost of chronic stress [Citation8]—have been reported to be associated with HR-QoL [Citation9]. In 2018, the American College of Obstetricians and Gynecologists (ACOG) recommended assessing social and structural determinants of health that may impact overall health and well-being of patients with endometriosis or any other gynecological condition [Citation10]. The Endometriosis Health Profile 30 Questionnaire (EHP30) has been widely used to assess QoL in endometriosis patients providing valuable insights into the disease burden [Citation11,Citation12]. Despite these recent advancements in understanding HR-QoL in endometriosis, the role of employment status remains largely unexplored, even though work instability and financial dependence are major stressors in chronic pain conditions [Citation13]. Addressing this gap, we sought to assess whether employment status independently influences HR-QoL beyond pain severity. Employment status has significant potential as a predictor of HR-QoL in chronic pain conditions and is particularly relevant in assessing the burden of endometriosis on women’s health [Citation14]; however, the relationship is likely bidirectional, as impaired HR-QoL may also reduce the ability to maintain employment. Although endometriosis can begin as early as menarche and persist through menopause, many women are only diagnosed in their late 20s or 30s. This delay is well documented and often attributed to the normalization of pain and the under-recognition by healthcare providers of symptoms in adolescence [Citation4]. As a result, women seen in IVF or clinical settings at this age have often been living with symptoms for many years, frequently throughout their education and early working life. Consequently, the disease can significantly impact a woman’s economic independence, as well as her individual and social empowerment. Supporting this, studies have reported that approximately 40% of women with endometriosis experience impaired career growth due to their condition, while nearly 50% report a decreased ability to work because of chronic pain symptoms [Citation14]. However, the potential role of employment status and job stability in shaping HR-QoL—beyond the burden of pain—has largely been overlooked in women with endometriosis. This study aimed to assess the association of employment status with HR-QoL in patients with endometriosis, examining multiple dimensions beyond clinical symptoms to determine its independent impact on patient well-being.

Study design, subjects, and setting This cross-sectional study was conducted at the Division of Gynecology, University Hospital of Geneva, Switzerland, between 2018 and 2020. Medical records from 460 consecutively referred or self-referred patients, aged 18 years or older, with a clinical and/or surgical diagnosis of endometriosis, were reviewed and included in the study. Informed consent was obtained from all participants. This project was approved by the Cantonal Research Ethics Commission (CCER), Geneva, Switzerland (protocol number: 09-193 R). Data collection The following information was collected for each participant: sociodemographic characteristics, anthropometric indices, health-related behaviors, endometriosis-attributable and associated pain symptoms with their treatments, and HR-QoL scoring. All variables were assessed by a gynecologist during a medical consultation, and patients completed the HR-QoL questionnaire on the same day as their medical evaluation. Sociodemographic characteristics These included age (years), marital status (or stable relationship), parity, current smoking status (yes/no), alcohol consumption (≤1 unit per week/>1 unit per week), and education level (≤10 years/>10 years), with the latter corresponding to a bachelor’s degree or higher. Employment status Employment status was evaluated according to a Swiss national categorization based on the percentage of working time. In Switzerland, a full-time position (100%) generally corresponds to a 42-h workweek, as defined by national labor regulations and most collective agreements. Based on this standard, employment was classified into four categories: full-time employment (>80%, i.e. more than 34 h per week), part-time employment (≤ 80%, i.e. 34 h or less per week), involuntary unemployment (job-seeking), and voluntary unemployment (not seeking an employment). Evaluation of endometriosis and its symptoms The presence or absence of endometriosis was determined based on imaging and/or surgical confirmation. The assessment of endometriosis-associated cardinal pain symptoms included superficial and deep dyspareunia, dysmenorrhea, painful bowel movements (dyschezia), painful urination, and nonmenstrual pelvic pain. All pain symptoms were evaluated using a visual analogue scale (VAS, 0–10). The evaluation of endometriosis treatments included the ongoing use of hormonal therapy (combined estro-progestins or progestins) and a history of one or more prior surgeries for endometriosis. Comorbidity status Comorbidities were assessed if present for at least six months prior to inclusion in the study. These also included nongynecological conditions including chronic pain-associated diseases or syndromes, such as migraine, fibromyalgia, chronic back pain, osteoarthritis, irritable bowel syndrome (IBS), abdominal/pelvic pain myalgia, and bladder pain syndrome/interstitial cystitis (BPS/IC). Comorbidities were extracted from the patient’s health records by the investigating gynecologist. Health-related quality of life (HR-QoL) scoring HR-QoL scoring was assessed using the Endometriosis Health Profile 30 (EHP-30) [Citation15], a reliable and valid patient-reported instrument designed to measure HR-QoL in women with endometriosis. Since its development, the EHP-30 has been widely used in clinical trials and is considered apt for providing a more comprehensive assessment of HR-QoL in endometriosis patients compared to other generic HR-QoL questionnaires (i.e. SF-36) [Citation16]. We used the core version of the EHP-30, which consists of 30 questions covering five domains or subscales [Citation17]: pain, control and powerlessness, emotional well-being, social support, and self-image. Each item is rated on a 5-point Likert scale ranging from ‘never’ to ‘always’ [Citation11]. Subscale scores are then transformed into a 0–100 scale, where higher scores indicate worse HR-QoL. A total EHP-30 score is the sum of the transformed scores achieved for each subscale (ranging from 0 to 500). The recall period for the EHP-30 was the past four weeks. Participants completed the EHP-30 in French, using the validated versions of the instrument. Statistical analysis Statistical analysis was performed with the SPSS software, version 22.0 for Windows (SPSS Inc., Chicago, IL, USA). Descriptive statistics were used to summarize the data. Means, standard deviations, and ranges were calculated for continuous variables, while categorical variables were reported as frequencies and percentages. The frequency and severity of symptoms were analyzed accordingly. The normality of continuous variables was assessed using the Shapiro–Wilk test. Normally distributed data were analyzed using Student’s t-test, while non-normally distributed data were analyzed using the Mann–Whitney U-test (for two groups) or the Kruskal–Wallis test (for more than two groups). Categorical variables were compared using the Chi-square test or Fisher’s exact test, as appropriate. Post hoc pairwise comparisons between employment groups were conducted to evaluate differences in HR-QoL scores, with Bonferroni-adjusted p values applied to correct for multiple comparisons. A multivariable linear regression analysis was conducted for each of the five domains of the EHP-30 questionnaire to determine whether employment status was an independent predictor of HR-QoL scores. The models were adjusted for relevant clinical, sociodemographic, and health-behavior variables, with voluntarily unemployed individuals serving as the reference group. Adjustment variables were selected based on prior literature and clinical relevance, including education (as a socioeconomic proxy), alcohol consumption (as a potential behavioral confounder), and comorbidities known to affect QoL. Results were reported as regression coefficients with 95% confidence intervals. A p value < 0.05 was considered statistically significant.

Participants’ characteristics The study population initially consisted of 460 subjects. Patients without a confirmed surgical and/or imaging diagnosis of endometriosis, as well as those who did not fully complete the EHP-30 questionnaire, were excluded. In the end, 324 patients met the study criteria and were included in the analysis. Mean age of participants was 32 ± 7.2 years. Among them, 78.2% had a diagnosis of deep endometriosis, 42.5% had also adenomyosis, and 34.5% had undergone one or more previous surgeries for endometriosis. Infertility was reported in 18.5% of patients, while 13.5% had a diagnosis of anxiety-depressive disorder. The mean EHP-30 scores (± SD) were 35.2 ± 26.7 for pain, 47.5 ± 30.6 for control and powerlessness, 40.4 ± 24.9 for emotional well-being, 37.8 ± 29.1 for social support, and 30.5 ± 28.6 for self-image. The results of the different subcategories of the EHP-30 according to employment status are presented in . The study population was subdivided into four groups according to employment status. 205 participants (63.2%) were employed and 119 (36.7%) were unemployed. Among them, full-time employment accounted for 51.5% of the study population, part-time employment for 11.7%, voluntary unemployment for 26.2%, and involuntary unemployment for 10.5%. Sociodemographic characteristics were analyzed across the four employment status groups. Univariate analysis revealed statistically significant differences between the subgroups in terms of age (p < 0.0001), deep dyspareunia (p = 0.005), dyschezia (p = 0.024), superficial dyspareunia (p = 0.009), education level (bachelor’s degree or higher, p < 0.01), alcohol consumption (p < 0.05), infertility (p < 0.01), and history of endometriosis surgery (p < 0.05). No significant differences were observed between employment status subgroups for other sociodemographic characteristics, including parity, dysmenorrhea, chronic pelvic pain, marital status, and anxiety-depressive disorder ( and ). Association between employment status and EHP30 subscale Univariate analysis demonstrated that employment status was significantly associated with various dimensions of HR-QoL, as measured by the EHP-30 questionnaire. Compared to voluntarily unemployed participants, full-time and part-time employed individuals reported significantly lower scores for pain, control, and powerlessness, suggesting better HR-QoL outcomes in these domains. Specifically, full-time employment was associated with a lower pain score (β = −9.57, 95% CI: −16.57 to −2.57; p = 0.008), while part-time employment showed an even greater negative association (β = −13.18, 95% CI: −22.88 to −3.49; p = 0.008). Conversely, unemployed individuals actively seeking work had significantly higher pain scores (β = 13.68, 95% CI: 3.38 to 23.97; p = 0.009) (). Similarly, control and powerlessness scores were significantly lower in employed groups, with full-time employment associated with a mean reduction of −10.80 (β = −10.80, 95% CI: −18.72 to −2.88; p = 0.008) and part-time employment showing a decrease of −11.64 point (β = −11.64, 95% CI: −22.60 to −0.67; p = 0.038). In contrast, the job-seeking unemployed subgroup had significantly worse scores in this domain (β = 12.41, 95% CI: 0.77 to 24.06; p = 0.037). Regarding emotional well-being, part-time employment was associated with a significantly lower score for this subscale (β = −9.40, 95% CI: −18.25 to −0.56; p = 0.037), while those actively seeking employment had a significantly higher score, indicating worse well-being (β = 10.14, 95% CI: 0.75 to 19.53; p = 0.034). For social support, full-time employment was significantly associated with better well-being (EHP 30 lower scores) (β = −9.79, 95% CI: −17.50 to −2.07; p = 0.013), whereas unemployed individuals actively seeking work did not show significant differences in this domain (p = 0.114). No statistically significant differences were observed between employment groups in self-image scores, with p values ranging from 0.241 to 0.835. After adjusting for age, body mass index (BMI), parity, infertility, anxiety/depression, alcohol and tobacco use, use of hormonal treatments, dyspareunia, chronic pelvic pain, dysmenorrhea, marital status, and education level, employment status remained an independent predictor of several HR-QoL dimensions. Full-time employment was significantly associated with lower EHP-30 pain score (β = −20.57, 95% CI: −40.70 to −0.43; p = 0.046). Part-time employment had an even stronger association with the pain EHP-30 subscale (β = −34.48, 95% CI: −58.00 to −10.88; p = 0.006). For total EHP-30 scores, job-seeking individuals (involuntary unemployed) had the highest burden, with significant higher scores compared to the reference group (β = 168.27, 95% CI: 30.60 to 205.91; p = 0.019), indicating substantially poorer HR-QoL. Although part-time employment was linked to lower EHP-30 powerlessness scores in the univariate analysis, this association was no longer statistically significant after adjustment (p = 0.179). Similarly, no significant associations were found for self-image across employment groups (p > 0.05).

Our findings demonstrate that employment status is an independent predictor of HR-QoL in women with endometriosis. Specifically, employment, whether full-time or part-time, is associated with lower EHP-30 pain scores, while unemployed individuals actively seeking a job displayed significantly worse HR-QoL independently of pain symptoms and main psychosocial variables. For women with endometriosis, maintaining stable employment can be challenging due to chronic pelvic pain, fatigue, and fluctuating symptom severity. Many patients experience absenteeism, reduced work productivity, and career stagnation, which may exacerbate the emotional and economic burden of the disease [Citation18]. The relationship between employment status and HR-QoL is particularly relevant in chronic conditions, where socioeconomic stability can influence treatment adherence, psychological resilience, and overall well-being [Citation2–5]. Having a stable job may help mitigate the burden of endometriosis-related symptoms through multiple mechanisms, as shown in other chronic pain conditions [Citation19]. Financial stability ensures access to healthcare, specialized consultations, and treatments. For instance, in Switzerland, where health insurance is mandatory, it can influence access to supplementary coverage and out-of-pocket medical expenses. However, financial security alone may not fully explain these differences, as unemployment in Switzerland is mitigated by a robust compensation system, providing 70% to 80% of the average salary from the last six months [Citation20]. Additionally, patients unable to work receive a special pension called disability insurance (Assurance Invalidité), a social security system that offers comfortable financial support to individuals whose health condition significantly limits their ability to work [Citation21]. However, access to disability insurance requires a formal medical assessment of long-term work incapacity. As such, not all unemployed participants in our study would qualify for this support, depending on the nature and severity of their condition. Despite those financial supports, unemployed individuals—particularly those actively seeking work—still reported significantly worse HR-QoL, including pain domain, suggesting that factors beyond income stability play a crucial role in well-being. Beyond financial security, employment provides psychological and emotional benefits, giving a sense of purpose, self-worth, and social integration, which may reduce stress and feelings of helplessness. Work can also serve as a cognitive distraction from pain and improve social support through workplace interactions. A structured daily routine associated with employment may positively impact sleep, diet, and physical activity, all of which influence symptom severity. Additionally, lower allostatic load—reducing chronic stress linked to financial and social insecurity—may help modulate neuroendocrine and inflammatory responses involved in endometriosis. Moreover, in our study, part-time employment showed a trend toward better EHP-30 scores (lower scores), suggesting that a more flexible work schedule may provide more time to manage endometriosis symptoms, reduce stress, and improve work-life balance. It is also possible that women with endometriosis who manage to arrange part-time work show greater self-advocacy, or benefit from more support from their employers or family, which could help lessen the burden of the disease. Furthermore, deep dyspareunia, superficial dyspareunia, and dyschezia were significantly different across employment groups, raising the question of whether employment influences pain perception or whether more symptomatic patients have lower employment stability due to their disease burden. While employment may provide psychosocial benefits that modulate pain perception, it is also plausible that women with more severe pain are unable to sustain employment, leading to a reverse causality effect. However, in our multivariable analysis, we adjusted for different dimensions of pain, and the association between employment status and HR-QoL remained significant, suggesting that factors beyond pain perception—such as social integration, self-efficacy, and workplace accommodations—may contribute to the observed differences. These findings highlight the need to better understand the bidirectional relationship between endometriosis symptom burden and employment stability. These findings are in line with recent national data from the UK Office for National Statistics, which highlighted that women diagnosed with endometriosis earn less and are more likely to occupy lower-paid positions compared to their peers, even years after diagnosis [Citation22]. This underscores the long-term occupational and financial impact of the disease, extending beyond the immediate clinical burden. However, we acknowledge that the cross-sectional nature of the study does not allow causal inference, and that reverse causality remains plausible, as reduced HR-QoL may itself lead to job loss or an inability to work. From a clinical perspective, our results suggest that employment status could serve as a useful indicator to identify patients at greater risk of reduced QoL, regardless of pain severity. Incorporating questions about occupational functioning during routine assessments may help triage patients for additional psychosocial support, pain management interventions, or workplace accommodations.

Several limitations and potential biases must be acknowledged when interpreting our findings. First, the study was conducted in a tertiary referral center, meaning that participants were likely self-referred or referred by specialists. This may have excluded women with milder symptoms, who are more commonly managed by general practitioners or private practice gynecologists. A volunteer bias may also be present, as 51.5% of the study population were employed full-time, which is higher than expected for a population suffering from a chronic and often debilitating disease. A statistically significant difference in age was observed across employment subgroups, which may reflect natural employment trends rather than a direct effect of endometriosis. Younger patients are more likely to be actively job-seeking, while older patients or those with children may opt for part-time work or voluntarily withdraw from the workforce. This age-related employment distribution constitutes a confounding bias, as it could partly explain differences in HR-QoL independent of disease severity. Finally, the fact that data were collected between 2018 and 2020, may potentially have missed changes in employment policies, remote work, healthcare access, and endometriosis awareness. However, given the chronic nature of the disease and persistent employment challenges, the relationship between employment status and HR-QoL likely remains relevant. The rise of flexible work post-COVID-19 warrants further investigation.

Our study provides strong evidence that employment status is an independent predictor of HR-QoL in women with endometriosis. While these findings highlight the importance of socioeconomic determinants in endometriosis management, they also raise critical questions about causality—does employment actively protect against worsening QoL, or does severe endometriosis prevent workforce participation? Addressing this uncertainty requires longitudinal studies to further explore these relationships and inform holistic, patient-centered management strategies that integrate both clinical and socioeconomic considerations. Moreover, these results should prompt physicians to carefully reassess the implications of prolonged sick leave in women with endometriosis. While intended to alleviate burden, extended absence from work may unintentionally transfer an even greater one—the psychological weight of unemployment. Further research should adopt a longitudinal design to clarify the directionality of the relationship between employment and HR-QoL and should also explore the impact of remote work, flexible employment arrangements, and workplace accommodations, which may influence workforce participation and well-being in women with endometriosis. Ethics approval and consent to participate Informed consent was obtained from all participants involved in this study. The study followed institutional and national ethical standards, in line with the 1964 Helsinki Declaration and its amendments. This project was approved by the Cantonal Research Ethics Commission (CCER), Geneva, Switzerland (protocol number: 09-193 R). Consent for publication All authors consent to the publication of this manuscript. Disclosure statement No potential conflict of interest was reported by the author(s). Data availability statement The data that support the findings of this study can be made available from Nicola Pluchino upon reasonable request. Correction Statement This article has been corrected with minor changes. These changes do not impact the academic content of the article. Additional information Funding

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