The psychosocial impact of endometriosis on South Indian women: a qualitative study

The psychosocial impact of endometriosis on South Indian women: a qualitative study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article The psychosocial impact of endometriosis on South Indian women: a qualitative study Nadia Daniel¹, Srishti Rentala Venkata¹, Helena Hughes-Davies¹, and 4 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7387184/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 12 You are reading this latest preprint version Abstract Background Endometriosis affects an estimated 10% of reproductive-aged women globally, yet remains underdiagnosed and poorly understood, particularly in low- and middle-income settings. In South India, sociocultural expectations surrounding menstruation, fertility, and gender roles may uniquely shape women’s experiences. This study explored the psychosocial impact of endometriosis on South Indian women and the cultural factors influencing their healthcare engagement. Methods We conducted semi-structured interviews with 13 women aged 31–48 years (mean = 37.2) with surgically or radiologically confirmed endometriosis, recruited from a specialist women’s hospital in Chennai. Interviews in English or Tamil were transcribed verbatim and analysed thematically using Braun and Clarke’s six-phase approach. Results Five themes were identified: (1) delayed recognition of symptoms due to pain normalisation and healthcare-seeking only after marriage; (2) fertility anxiety shaped by cultural pressure to conceive and fear of infertility; (3) navigating modern womanhood while balancing education, employment, and traditional expectations; (4) healthcare interactions, including trust in medical authority and use of complementary medicine; and (5) social dynamics characterised by stigma, secrecy, and variable partner and peer support. Conclusions Endometriosis imposes substantial psychological and social burdens on South Indian women. Culturally responsive care, public education, and supportive workplace and community strategies could improve early recognition, reduce stigma, and enhance quality of life. Endometriosis qualitative research South India psychosocial impact menstrual stigma fertility anxiety women’s health 1. Introduction Endometriosis is a chronic disease that affects approximately 10% of reproductive-age women worldwide, yet it remains widely misunderstood and underdiagnosed ( 1 ). It is characterised by the presence of endometrial-like tissue outside the uterine cavity, which may manifest as peritoneal lesions, superficial implants, cysts on the ovary, or deep infiltrating disease ( 2 ). These lesions can induce a range of debilitating symptoms, including chronic pelvic pain, dyspareunia, dysmenorrhea, dysuria, and dyschezia ( 3 ). In many women, hyperalgesia develops, where a non-painful stimulus triggers an intolerable painful reaction ( 3 ). Infertility affects an estimated 30–50% of women with endometriosis, further impacting their quality of life ( 4 ). The impact of endometriosis extends beyond physical symptoms, profoundly affecting the mental and social well-being of women. Sociocultural factors such as the normalisation of women’s pain, lack of education about menstrual-related disorders, and stigma surrounding menstruation and fertility contribute to the marginalisation of those with endometriosis ( 5 ). This stigma can lead to social exclusion, discrimination, and elevated mental health distress ( 6 ). Moreover, endometriosis is notoriously underdiagnosed, with a well-documented latency of 4–11 years from the onset of symptoms to diagnosis ( 7 , 8 ). Sociocultural barriers, including stigma and misconceptions, may deter women from seeking medical help, thereby exacerbating diagnostic delays and complicating treatment outcomes ( 8 ). Qualitative studies play a crucial role in exploring the nuanced experiences of patients with endometriosis, shedding light on how chronic pain affects various facets of their lives. However, a recent systematic review highlighted a significant gap in qualitative research across diverse cultural contexts ( 9 ). Limited evidence suggests that sociocultural background significantly influences how symptoms are interpreted, disclosed, and managed ( 5 , 10 , 11 ). In India, particular sociocultural factors such as pronatalist expectations and stigma around menstrual health may uniquely impact women with endometriosis ( 12 – 15 ). Despite this, to our knowledge, no qualitative studies have examined the experiences of Indian women with endometriosis, leaving a critical gap in understanding how these factors influence their healthcare experiences and personal lives. To address this gap, we conducted a qualitative study exploring how South Indian women experience endometriosis and its impact on their relationships with family, community, and healthcare providers. By examining these dynamics, we aim to inform more culturally responsive care and improve health outcomes for women in this setting. 2. Methods We conducted a cross-sectional, qualitative study using semi-structured interviews to explore South Indian women’s experiences of endometriosis. This design was chosen to elicit detailed discussions with patients on their experiences, concerns, perceptions, and beliefs. The study was preregistered (ID: 10.17605/OSF.IO/G4N3U ), and differences from the preregistered protocol are detailed in Supplementary Material 1. Participants Thirteen women with endometriosis took part in this study. The study population comprised South Indian women registered at Seethapathy Hospital, Chennai. Recruitment continued until data saturation was achieved, which occurred after the eleventh interview; two additional participants were interviewed to confirm the adequacy of coverage. Eligible women were aged 18 years or older, self‑identified as South Indian, and had a definitive diagnosis of endometriosis established surgically or through pelvic imaging. Women who were unwilling to participate or who were experiencing pelvic pain due to causes other than endometriosis were excluded. Variation in age, marital status and parity was sought to enrich the dataset; however, all participants were married. Procedures Eligible patients were identified during outpatient consultations or via the hospital database and approached by telephone or in person. An information sheet was issued at least 48 hours before consent was obtained. Written or recorded verbal informed consent (according to each participant’s preference) was obtained before interviews. Interviews were conducted between 17 February and 7 March 2025 by ND or SRV, in either English or Tamil, according to participant preference. Where Tamil was used, real-time translation was provided by bilingual clinic staff. Interviews were conducted in a private clinic room or via an encrypted telephone line. The interview guide (Supplementary Material 2) covered four domains: ( 1 ) living with endometriosis, ( 2 ) physical, social, and emotional impacts, ( 3 ) sources of support and unmet needs, and ( 4 ) future outlook. Interviews lasted 15–45 minutes (median = 32 minutes), were audio-recorded, and transcribed verbatim. All transcripts were anonymised and labelled Participant 1–13. Data analysis and management We conducted a thematic analysis to interpret the interview data. Thematic analysis is a method that systematically identifies, organises and offers insight into patterned meanings within a dataset, enabling researchers to explore and make sense of participants’ experiences. Our analytical process followed the six‑phase approach outlined by Braun and Clarke ( 16 ), which involves the following: Phase 1 – Familiarisation. ND and SRV transcribed each audiotaped interview, a process that afforded close engagement with the material. All authors then read the transcripts in full to consolidate familiarity. Phase 2 – Generating initial codes. SRV and HHD carried out line‑by‑line open coding of all interviews using NVivo 12. Phase 3 – Searching for themes. SRV and HHD collated related codes and drafted a preliminary list of candidate themes that captured salient features of the women’s narratives. Phase 4 – Reviewing themes. The provisional themes were debated in depth by SRV and HHD, with segments of text extracted to evidence each theme. Where necessary, themes were merged, split or re‑labelled until the structure accurately reflected the dataset. Phase 5 – Defining and naming themes. ND and AD applied the agreed codebook to all transcripts, cross‑checking one another’s coding and resolving discrepancies through discussion until complete agreement was reached. Phase 6 – Producing the report. Four authors (ND, SRV, HHD, AD) refined theme definitions, ensured internal coherence and distinctiveness, and selected illustrative verbatim extracts for the present manuscript. All authors approved the final manuscript. Data Security All data was stored on encrypted University of Oxford servers in compliance with institutional data protection policies. This included audio recordings, verbatim transcripts, and consent forms. Written or verbal informed consent was obtained from all participants prior to enrolment, including consent for audio recording and publication of anonymised quotations. Data were pseudoanonymised during the data collection period (February–March 2025) and remained in this form until 1 April 2025 to allow participants the opportunity to withdraw their data. After this period, all identifying information was permanently deleted, and transcripts were fully anonymised prior to analysis. Ethics Ethics approval was obtained from the Institutional Ethics Committee of Seethapathy Clinic and Hospital, Chennai, India (ECR/311/Indt/TN/2019/RR-22), and from the Oxford Tropical Research Ethics Committee, University of Oxford, UK (reference 1045729). The work was conducted in accordance with the principles of the Declaration of Helsinki. Participants were assured that they could withdraw at any time without consequence and that all information would remain confidential. 3. Results Thirteen married South Indian women, aged 31–48 years (mean = 37.2 ± 5.5 years), participated (Table 1 ). Endometriosis‑related symptoms first appeared at a mean age of 24.4 years, and the definitive diagnosis was obtained 7 years later on average (range = 1–21 years). Five overarching themes were identified through thematic analysis (Table 2 ). Table 1 Participant characteristics Characteristic n (%) Education University (Bachelor’s–PhD) 11 (85%) Secondary school 2 (15%) Employment status Paid employment 9 (69%) House‑wife 3 (23%) Retired 1 (8%) Obstetric history ≥ 1 live birth 9 (69%) Nulliparous 3 (23%) Miscarriage 1 (8%) Surgical treatment ≥ 1 surgery for endometriosis 10 (77%) No surgery 3 (23%) Perceived interference with life Very much 12 (92%) Moderate 1 (8%) Treatment satisfaction Very 7 (54%) A little 5 (38%) Moderate 1 (8%) Table 2 Themes and subthemes Theme Subtheme 1. Delayed Recognition of Endometriosis 1.1 Trivialisation of endometriosis symptoms 1.2 Healthcare-seeking only after marriage 2. Fertility Anxiety 2.1 Cultural and familial pressure to conceive 2.2 Fear of infertility 2.3 Apprehension toward surgical and reproductive interventions 3. Navigating Modern Womanhood 4. Healthcare Interactions 4.1 Trust and deference to medical authority 4.2 Medical pluralism and self-directed alternatives 5. Support and Stigma in Social Dynamics 5.1 Concealment and disclosure 5.2 Partners as sources of support and stress 5.3 Social misconceptions and cultural change Theme 1: Delayed Recognition of Endometriosis 1.1 Trivialisation of endometriosis symptoms Pain was repeatedly described as the most debilitating and enduring feature of endometriosis—many experienced symptoms from adolescence, with pain intensifying over time and severely disrupting daily life. Symptoms extended beyond menstruation, often affecting bowel movements, sexual activity, and mobility. “Pain, severe pain. Bad mood. So much of pain, starting ten days before periods, and finishing after ten days… it’s been so much of pain” (Participant 1). “It’s unbearable. I can’t walk, I can’t do anything. Even when I go to the office, I sit in one place” (Participant 13). Despite severe symptoms, participants delayed seeking care. Pain was internalised as normal and often attributed to other causes such as digestion, stress, or family history. Family members, peers, and clinicians also reinforced the belief that menstrual pain was typical and should be endured. “I thought it is natural.” (Participant 3). “They always feel that periods are just a part of women’s life. And pain is something that we have to endure every month. So it’s not taken seriously” (Participant 11). “My mother also had that type of pain... they thought the same would happen for me, so I didn’t go for treatment earlier” (Participant 8). Upon seeking help, many participants encountered dismissal or misattribution of symptoms by clinicians, who often normalised severe menstrual pain or attributed it to unrelated conditions. “I used to bleed a lot and it’s unbearable... the doctor said it’s normal” (Participant 13). 1.2 Healthcare-seeking only after marriage Although symptoms were present for years, many women sought medical care only after marriage. In most cases, this was prompted by pain during intercourse or concerns about fertility. “It wasn’t because of the pain, it was because we are planning for a baby. So we focused on that” (Participant 1). “Before marriage, we don’t usually go for a check-up... Only after marriage, since I couldn’t conceive, did I go” (Participant 8). In nearly all cases, a definitive diagnosis typically occurred only after marriage prompted engagement with healthcare systems. Theme 2: Fertility Anxiety 2.1 Cultural and familial pressure to conceive Several participants described significant cultural expectations to conceive soon after marriage, with pressure originating from family, peers, and broader societal norms. This often caused emotional stress and shaped decisions about seeking medical care. “In Indian culture, it is always there. If you are getting married, after one month they ask, when the baby will come, when do you plan on a baby? That creates so much stress” (Participant 1). 2.2 Fear of infertility The possibility of infertility was a significant source of distress, often more troubling than the physical pain itself. Hopes of preserving fertility frequently guided treatment decisions. “Ah, the baby only… my mind is full of the baby only” (Participant 1). “What if I never get pregnant? What if I lose my chance?” (Participant 6). “Actually, I didn’t know it was because of endometriosis… The main issue was I couldn’t conceive” (Participant 8). 2.3 Apprehension toward surgical and reproductive interventions Surgical and assisted reproductive options were often viewed as frightening or overwhelming. Despite this, many participants were willing to undergo interventions due to the perceived benefit for fertility. “We thought, it’s okay, we will have the laparoscopic surgery, then I’ll be pregnant. As long as we have a baby” (Participant 1). “I went to the hospital on the day (of the surgery)... Oh my god. I was scared. I wanted to cry, but I didn’t cry” (Participant 13). Theme 3: Navigating Modern Womanhood Participants reflected on the strain of balancing traditional gender expectations with aspirations around education, employment, and independence. Many felt that endometriosis intensified this tension, making it difficult to fulfil cultural expectations while sustaining personal and professional goals. “Back then, like my mother-in-law’s time, everyone got married by 18 so getting pregnant was not a difficult thing. But now society is expecting women to be financially independent, have a higher level education and everything... But for us, we still need to have children, so we are living with this problem” (Participant 2). “It’s just that I was always distracted and I could not give my hundred percent—both at work and at home” (Participant 11). Symptoms such as chronic pain and fatigue disrupted women’s ability to participate fully in work and daily responsibilities. Employers, particularly male supervisors, were frequently described as unsympathetic or uninformed. This often led to guilt, denial of medical leave, and withdrawal from roles. “In the workplace, no, people... they have a certain demand for every single role... I used to feel very guilty... So I just withdrew myself” (Participant 7). “They didn’t know about endometriosis... They had to Google and check if I was making sense and only then they granted the leave … ” (Participant 6). Participants emphasised the need for greater awareness and accommodation, noting that the invisibility of the condition often led to misunderstanding, stigma, and pressure to push through symptoms. Theme 4: Healthcare Interactions 4.1 Trust and deference to medical authority Many participants expressed strong trust in healthcare professionals, choosing to follow medical advice without seeking detailed explanations. This trust often stemmed from a belief that medical professionals knew best, especially when facing a complex or unfamiliar condition like endometriosis. “Actually, I don’t know the effects of it. But if it is very much required, I can go for it” (Participant 8). “I didn’t think of much actually. Because my doctor said it was not something that we need to be worried about” (Participant 11). Although some participants experienced dismissal in primary care ( Theme 1.1 ), most reported that their care improved markedly following referral to specialists. “I don’t have any concern of talking with doctors because all the doctors were supportive only, they were guiding me” (Participant 2). “I think improved a lot. They actually now believe you… they are familiar with such patients” (Participant 6). 4.2 Medical pluralism and self-directed alternatives Several participants turned to complementary medicine, including Ayurveda, yoga, or homeopathy. These were pursued either alongside or in place of conventional treatment, often driven by dissatisfaction or cultural preference. “So someone suggested we try the Ayurvedic treatment. So I went with the treatment… now I am doing better” (Participant 5). “Just a simple trial of homeopathy because everything else had so many side effects. Then it worked, so I continued” (Participant 2). Some participants expressed their frustration at the exclusion of traditional treatments from mainstream medical conversations and called for more holistic discussions in healthcare settings. “I want doctors to acknowledge that yoga might help. IVF is expensive. Yoga is cheaper” (Participant 11). “None of the doctors even talk about Ayurvedic treatments. Which is a simpler and much easier process, rather than undergoing a full-fledged surgical treatment, right?” (Participant 5) Theme 5: Support and Stigma in Social Dynamics 5.1 Concealment and disclosure Participants often concealed their diagnosis from family members, particularly in-laws, due to fears of blame or judgement. Disclosure was influenced by generational attitudes and perceived understanding. "They have a typical Indian mindset. They get panicked at something if the baby can’t get what it needs. They get stressed. They blame me. ‘The girl has the cyst. That’s why the baby might not come.’ That’s why we don’t tell the family. This is the Indian culture, you know." (Participant 1) Older generations were frequently seen as unsympathetic, normalising severe menstrual pain and expecting uninterrupted productivity. "Actually, the older generation still thinks that periods are just a normal thing, and we should work like any other day. " (Participant 2) In contrast, younger relatives and friends were more likely to offer empathy, encouraging disclosure and mutual support. "My brother and brother’s wife said ‘Don’t care for that. First focus on your health, clear this, then the baby is next thing.’" (Participant 1) "I did check with a lot of my friends. They have the same problems, mainly because of work." (Participant 6) 5.2 Partners as sources of support and stress Partners played a critical role in emotional coping. Some participants described strong support from their husbands, who attended appointments and provided reassurance. “My husband has been good—so that has been the very, you know, the best part because not many people around you are familiar with endometriosis symptoms." (Participant 3) "My husband has been with me to all my scans... he knows how much it’s affected me. He’s the one who’s taken the brunt of my mood swings." (Participant 6) Others described the strain endometriosis placed on intimacy and everyday dynamics, particularly in the context of trying to conceive. "After marriage, sexual intercourse started getting difficult and the pain started and only early 2019 did I realise I had endometriosis." (Participant 6) "If you are a couple who are trying for a baby and if it affects the daily routine in one week in a month, it’s quite bothering." (Participant 3) However, others feared disclosure to their partners, especially if the relationship was strained or if disclosure could lead to negative repercussions within their family. "I haven’t told my husband, so I am not sure how he would feel. I’m scared that what if he finds out I have this problem, what if he tells my in-laws, how they will take it, that is one big question I have… I am scared how he may react." (Participant 2) 5.3 Social misconceptions and cultural change Participants highlighted a widespread lack of understanding of endometriosis. Menstrual pain was frequently dismissed as normal or exaggerated. "So I know some people might think that I’m faking it… People don’t understand what it is, and sometimes they make remarks like, ‘I went through the same period and we all did, and I’m not sure why it is so painful for you.’" (Participant 3) Cultural taboos surrounding menstruation and reproductive health created feelings of shame and social isolation. "They will think I am not fit to be a woman... they may label me and that’s what is scaring me... many people all around us don’t even have a basic knowledge about it." (Participant 2) "There are very big barriers and misconceptions around the period. It’s very difficult to speak science to them." (Participant 6) Despite these challenges, several participants observed that awareness was gradually improving, particularly among educated and younger populations. "Actually, in the educated community the perception is actually changing... at least with this younger generation." (Participant 2) "Now people are much more educated and they do understand what the health issues are... unlike now, where we say it’s a modern society." (Participant 5) 4. Discussion This study aimed to qualitatively examine the psychosocial impact of endometriosis among South Indian women. Five interrelated themes emerged: delayed recognition of endometriosis, fertility anxiety, navigating modern womanhood, healthcare interactions, and social dynamics shaped by stigma and support. While consistent with international evidence on the normalisation of menstrual pain and diagnostic delay ( 17 , 18 ), our findings highlight several culturally specific patterns: delayed engagement with healthcare services until after marriage due to fertility pressures, concurrent use of biomedical and complementary therapies, and selective disclosure of the diagnosis due to stigma and fear of blame. In our sample, delayed recognition of symptoms was linked to two factors: the trivialisation of menstrual pain, which is consistent with findings from Western settings ( 19 ), and the postponement of care until after marriage, which appears culturally specific. Delays of up to 21 years were reported, suggesting that cultural silence around menstruation, combined with pain normalisation, may substantially prolong diagnostic pathways in South India. Marriage frequently marked the point of healthcare engagement, prompted by dyspareunia or fertility concerns, reflecting sociocultural expectations to conceive soon after marriage. Fertility concerns were particularly prominent, with infertility fears outweighing pain and motivating medical or surgical interventions despite apprehensions. Fertility-related anxiety may be heightened in strongly pronatalist societies like India, where childbearing is not only highly valued but considered essential to a woman’s social status and personal fulfilment ( 20 ). Failure to conceive in this context is associated with stigma, loss of status, and devaluation within family and community networks ( 14 , 21 , 22 ). Participants described navigating dual expectations of pursuing education and employment while fulfilling traditional gender roles related to marriage and motherhood ( 23 , 24 ). Among this predominantly middle-class, university-educated sample, endometriosis exacerbated these competing pressures, limiting productivity and leading some women to conceal their condition, withdraw from work, or struggle to access medical leave. Employers were frequently perceived as unaware or unsympathetic. These findings align with broader literature on the occupational impact of endometriosis, highlighting the need for workplace policies that recognise cyclical pain, flexible scheduling, and symptom-informed accommodations ( 10 , 25 – 27 ). Deference to medical authority was prominent in our interviews, with participants often accepting recommendations without detailed discussion. This aligns with reports of more directive communication patterns in some Indian clinical settings ( 28 – 30 ), while contrasting with patient-centred models emphasised elsewhere ( 31 , 32 ). In this sample, trust in physicians sometimes led to premature reassurance or misattribution of symptoms at the primary care level. However, referral to specialists was consistently associated with more empathetic communication and greater validation of symptoms. Alongside biomedical care, many participants engaged with complementary therapies such as Ayurveda, yoga, and homeopathy, particularly when prior experiences with pharmaceuticals were perceived as ineffective or burdensome. This preference reflects broader patterns in India, where complementary therapies are widely used for chronic health conditions, often due to perceptions of naturalness, safety, and cultural familiarity ( 33 , 34 ). Stigma and secrecy shaped how the participants navigated relationships with partners, family, and peers. Menstrual taboos and infertility-related shame limited disclosure to in-laws and older relatives. In contrast, younger relatives and peers were more likely to offer empathy and support, suggesting a generational shift in attitudes towards reproductive health. These changing dynamics reflect wider global efforts to destigmatise menstrual health and improve reproductive health literacy ( 12 , 35 ). Participants in this study emphasised the need for better education, particularly for older women. Similar appeals for increased awareness and intergenerational dialogue have been reported in other cultural settings ( 36 ). Interventions such as family-inclusive counselling and community-based stigma reduction programs could help facilitate open dialogues, reduce social isolation, and strengthen support systems for women living with endometriosis ( 36 , 37 ). 4.1 Strengths and limitations This study has several strengths. To our knowledge, it is the first qualitative study to explore the psychosocial impact of endometriosis among South Indian women, addressing an important gap in culturally contextualised research. Thematic analysis was conducted rigorously, with multiple researchers independently coding and refining themes, which enhanced analytical credibility and minimised interpretive bias. Supplementary interviews conducted beyond the point of data saturation confirmed thematic sufficiency and internal coherence. There are also limitations. The sample was small and recruited from a single urban clinic in Chennai, which may limit the transferability of findings to rural or less-resourced populations. All participants were married, and most were university-educated and in paid employment, underrepresenting women with lower health literacy, different marital statuses, or lower socioeconomic backgrounds. While interpreter support was used for Tamil-speaking participants, some linguistic nuance or emotional expression may have been lost in translation. As with all qualitative research, findings are shaped by both participant accounts and researcher interpretation, although steps such as reflexive team discussion, independent coding, and theme triangulation were undertaken to enhance rigour. 4.2 Implications for practice, policy, and research These findings have several implications. Clinical practice should screen for severe menstrual pain, dyspareunia, and subfertility irrespective of marital status. Partner-inclusive counselling that covers both pain and fertility goals may improve engagement. Policy initiatives should include school- and community-based menstrual health programmes targeting stigma and improving literacy, with outreach to older generations. Workplaces could implement policies recognising cyclical pain and allowing flexible scheduling. Future research should explore rural and less-resourced populations, assess the role of complementary medicine, and evaluate culturally-adapted care models that integrate patient preferences with evidence-based treatment. 5. Conclusion Among South Indian women, endometriosis affects identity, relationships, and work through pain normalisation, fertility expectations, and menstrual stigma. These culturally embedded factors influence care-seeking, delay diagnosis, and shape psychosocial wellbeing. Culturally responsive clinical care, community education, and supportive workplace policies may promote earlier recognition, reduce stigma, and improve quality of life in this population. Declarations Ethics approval and consent to participate Ethics approval was obtained from the Institutional Ethics Committee of Seethapathy Clinic and Hospital, Chennai, India (ECR/311/Indt/TN/2019/RR-22), and from the Oxford Tropical Research Ethics Committee, University of Oxford, UK (reference 1045729). The work was conducted in accordance with the principles of the Declaration of Helsinki. Written or verbal informed consent was obtained from all participants prior to enrolment, including consent for audio recording and participation in the study. Consent for publication All participants provided written or verbal informed consent for the publication of anonymised quotations from their interviews. Availability of data and materials The datasets generated and/or analysed during the current study are not publicly available due to participant privacy but are available from the corresponding author on reasonable request. Competing interests The authors declare that they have no competing interests. Funding ND and SRV received travel and research support from the Royal College of Obstetricians and Gynaecologists, the University of Oxford (Magdalen College, Keble College, and the Linder Grant), and the Worshipful Society of Apothecaries. Authors’ contributions Conception and design: ND, SRV, UR, SM Interviews: ND, SRV Ethics application: CH, UR Data analysis: ND, SRV, HHD, AD Manuscript writing: ND, SRV Review and approval of final draft: All authors Acknowledgements The authors thank the women who generously shared their time and experiences for this study. We are grateful to the clinical and administrative staff at Seethapathy Clinic, Chennai, for their assistance in identifying eligible participants, arranging interviews, and providing translation support. References Parasar P, Ozcan P, Terry KL. Endometriosis: Epidemiology, Diagnosis and Clinical Management. Curr Obstet Gynecol Rep. 2017;6(1):34–41. 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Gilmour JA, Huntington A, Wilson HV. The impact of endometriosis on work and social participation. Int J Nurs Pract. 2008;14(6):443–8. Gubitra A, Mascarenhas Z. Paternalism and Patient Autonomy | Indian Journal of Health and Medical Law. 2023 May 12 [cited 2025 Jul 22]; Available from: https://lawjournals.celnet.in/index.php/ijhml/article/view/951 Ghooi R, Deshpande S. Patients’ rights in India: an ethical perspective. Indian J Med Ethics [Internet]. 2012 Oct [cited 2025 Jul 22];(4). Available from: http://ijme.in/articles/patients-rights-in-india-an-ethical-perspective/?galley=html Matusitz J, Spear J. Doctor-Patient Communication Styles: A Comparison Between the United States and Three Asian Countries. J Hum Behav Soc Environ. 2015;25(8):871–84. Beck RS, Daughtridge R, Sloane PD. Physician-patient communication in the primary care office: a systematic review. J Am Board Fam Pract. 2002;15(1):25–38. Shi L. The Impact of Primary Care: A Focused Review. Scientifica. 2012;2012:432892. Rao VS, Armour M, Cheema BS, Smith CA, Moran L, Perera RS, et al. Use of traditional and complementary medicine by ethnic Indian women living with polycystic ovary syndrome: a global survey. BMC Complement Med Ther. 2023;23(1):392. Pengpid S, Peltzer K. Utilization of complementary and traditional medicine practitioners among middle-aged and older adults in India: results of a national survey in 2017–2018. BMC Complement Med Ther. 2021;21(1):262. Trieloff A, Salwitz E, Hrubiak S, Patel S, Greulach M, Hoffman S et al. ‘This shame, it is everywhere’: Cross-generational menstruation experiences among women living in Florence, Italy. Health Behav Res [Internet]. 2024;7(3). Available from: https://newprairiepress.org/hbr/vol7/iss3/1 van Lonkhuijzen RM, Garcia FK, Wagemakers A. The Stigma Surrounding Menstruation: Attitudes and Practices Regarding Menstruation and Sexual Activity During Menstruation. Womens Reprod Health. 2023;10(3):364–84. Johnston-Robledo I, Chrisler JC. The menstrual mark: Menstruation as social stigma. Sex Roles J Res. 2013;68(1–2):9–18. Additional Declarations No competing interests reported. Supplementary Files SupplementaryMaterialforEndometriosis.docx Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 08 Oct, 2025 Reviews received at journal 07 Oct, 2025 Reviews received at journal 15 Sep, 2025 Reviewers agreed at journal 07 Sep, 2025 Reviewers agreed at journal 05 Sep, 2025 Reviewers agreed at journal 05 Sep, 2025 Reviewers agreed at journal 25 Aug, 2025 Reviewers invited by journal 25 Aug, 2025 Editor invited by journal 21 Aug, 2025 Editor assigned by journal 19 Aug, 2025 Submission checks completed at journal 19 Aug, 2025 First submitted to journal 16 Aug, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7387184","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":508153532,"identity":"d6c654d8-835f-4073-8957-920759f71c22","order_by":0,"name":"Nadia Daniel¹","email":"","orcid":"","institution":"University of Oxford","correspondingAuthor":false,"prefix":"","firstName":"Nadia","middleName":"","lastName":"Daniel¹","suffix":""},{"id":508153533,"identity":"1c7f3b9f-dbe7-490b-847e-c408c157f50b","order_by":1,"name":"Srishti Rentala Venkata¹","email":"","orcid":"","institution":"University of Oxford","correspondingAuthor":false,"prefix":"","firstName":"Srishti","middleName":"Rentala","lastName":"Venkata¹","suffix":""},{"id":508153534,"identity":"095c079c-8f83-47b4-82ff-b1e105514068","order_by":2,"name":"Helena Hughes-Davies¹","email":"data:image/png;base64,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","orcid":"","institution":"University of Oxford","correspondingAuthor":true,"prefix":"","firstName":"Helena","middleName":"","lastName":"Hughes-Davies¹","suffix":""},{"id":508153536,"identity":"1c48966a-5c13-436c-a506-029c273fdd2a","order_by":3,"name":"Uma Ram²","email":"","orcid":"","institution":"Seethapathy Clinic and Hospital","correspondingAuthor":false,"prefix":"","firstName":"Uma","middleName":"","lastName":"Ram²","suffix":""},{"id":508153538,"identity":"0fed7048-3ce2-4937-856b-c0dc0631535c","order_by":4,"name":"Amina Daniel³","email":"","orcid":"","institution":"University of Brighton","correspondingAuthor":false,"prefix":"","firstName":"Amina","middleName":"","lastName":"Daniel³","suffix":""},{"id":508153540,"identity":"09631e59-de20-4dea-9054-677394cfc159","order_by":5,"name":"Sandeep Murali²","email":"","orcid":"","institution":"Seethapathy Clinic and Hospital","correspondingAuthor":false,"prefix":"","firstName":"Sandeep","middleName":"","lastName":"Murali²","suffix":""},{"id":508153542,"identity":"98ae187c-56d4-428d-8ac4-8f84b8fa02e0","order_by":6,"name":"Carl Heneghan⁴","email":"","orcid":"","institution":"University of Oxford","correspondingAuthor":false,"prefix":"","firstName":"Carl","middleName":"","lastName":"Heneghan⁴","suffix":""}],"badges":[],"createdAt":"2025-08-16 11:38:11","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7387184/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7387184/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":90388424,"identity":"e14a57e4-9b3e-43d1-9056-c23874dcd684","added_by":"auto","created_at":"2025-09-02 08:00:27","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":915025,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7387184/v1/e46baeea-207f-4f6c-a70e-5c56d4da60ef.pdf"},{"id":90387081,"identity":"163939ad-4987-44ef-956d-99ac1ff9b413","added_by":"auto","created_at":"2025-09-02 07:44:27","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":8593,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementaryMaterialforEndometriosis.docx","url":"https://assets-eu.researchsquare.com/files/rs-7387184/v1/40cc2aac3379bbe282de043a.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"The psychosocial impact of endometriosis on South Indian women: a qualitative study","fulltext":[{"header":"1. Introduction","content":"\u003cp\u003eEndometriosis is a chronic disease that affects approximately 10% of reproductive-age women worldwide, yet it remains widely misunderstood and underdiagnosed (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). It is characterised by the presence of endometrial-like tissue outside the uterine cavity, which may manifest as peritoneal lesions, superficial implants, cysts on the ovary, or deep infiltrating disease (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). These lesions can induce a range of debilitating symptoms, including chronic pelvic pain, dyspareunia, dysmenorrhea, dysuria, and dyschezia (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). In many women, hyperalgesia develops, where a non-painful stimulus triggers an intolerable painful reaction (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). Infertility affects an estimated 30\u0026ndash;50% of women with endometriosis, further impacting their quality of life (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe impact of endometriosis extends beyond physical symptoms, profoundly affecting the mental and social well-being of women. Sociocultural factors such as the normalisation of women\u0026rsquo;s pain, lack of education about menstrual-related disorders, and stigma surrounding menstruation and fertility contribute to the marginalisation of those with endometriosis (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). This stigma can lead to social exclusion, discrimination, and elevated mental health distress (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). Moreover, endometriosis is notoriously underdiagnosed, with a well-documented latency of 4\u0026ndash;11 years from the onset of symptoms to diagnosis (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Sociocultural barriers, including stigma and misconceptions, may deter women from seeking medical help, thereby exacerbating diagnostic delays and complicating treatment outcomes (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eQualitative studies play a crucial role in exploring the nuanced experiences of patients with endometriosis, shedding light on how chronic pain affects various facets of their lives. However, a recent systematic review highlighted a significant gap in qualitative research across diverse cultural contexts (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). Limited evidence suggests that sociocultural background significantly influences how symptoms are interpreted, disclosed, and managed (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). In India, particular sociocultural factors such as pronatalist expectations and stigma around menstrual health may uniquely impact women with endometriosis (\u003cspan additionalcitationids=\"CR13 CR14\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Despite this, to our knowledge, no qualitative studies have examined the experiences of Indian women with endometriosis, leaving a critical gap in understanding how these factors influence their healthcare experiences and personal lives.\u003c/p\u003e\u003cp\u003eTo address this gap, we conducted a qualitative study exploring how South Indian women experience endometriosis and its impact on their relationships with family, community, and healthcare providers. By examining these dynamics, we aim to inform more culturally responsive care and improve health outcomes for women in this setting.\u003c/p\u003e"},{"header":"2. Methods","content":"\u003cp\u003eWe conducted a cross-sectional, qualitative study using semi-structured interviews to explore South Indian women\u0026rsquo;s experiences of endometriosis. This design was chosen to elicit detailed discussions with patients on their experiences, concerns, perceptions, and beliefs. The study was preregistered (ID: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.17605/OSF.IO/G4N3U\u003c/span\u003e\u003cspan address=\"10.17605/OSF.IO/G4N3U\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e), and differences from the preregistered protocol are detailed in Supplementary Material 1.\u003c/p\u003e\u003cp\u003e\u003cb\u003eParticipants\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThirteen women with endometriosis took part in this study. The study population comprised South Indian women registered at Seethapathy Hospital, Chennai. Recruitment continued until data saturation was achieved, which occurred after the eleventh interview; two additional participants were interviewed to confirm the adequacy of coverage.\u003c/p\u003e\u003cp\u003eEligible women were aged 18 years or older, self‑identified as South Indian, and had a definitive diagnosis of endometriosis established surgically or through pelvic imaging. Women who were unwilling to participate or who were experiencing pelvic pain due to causes other than endometriosis were excluded. Variation in age, marital status and parity was sought to enrich the dataset; however, all participants were married.\u003c/p\u003e\u003cp\u003e\u003cb\u003eProcedures\u003c/b\u003e\u003c/p\u003e\u003cp\u003eEligible patients were identified during outpatient consultations or via the hospital database and approached by telephone or in person. An information sheet was issued at least 48 hours before consent was obtained. Written or recorded verbal informed consent (according to each participant\u0026rsquo;s preference) was obtained before interviews.\u003c/p\u003e\u003cp\u003eInterviews were conducted between 17 February and 7 March 2025 by ND or SRV, in either English or Tamil, according to participant preference. Where Tamil was used, real-time translation was provided by bilingual clinic staff. Interviews were conducted in a private clinic room or via an encrypted telephone line. The interview guide (Supplementary Material 2) covered four domains: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) living with endometriosis, (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) physical, social, and emotional impacts, (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) sources of support and unmet needs, and (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) future outlook. Interviews lasted 15\u0026ndash;45 minutes (median\u0026thinsp;=\u0026thinsp;32 minutes), were audio-recorded, and transcribed verbatim. All transcripts were anonymised and labelled Participant 1\u0026ndash;13.\u003c/p\u003e\u003cp\u003e\u003cb\u003eData analysis and management\u003c/b\u003e\u003c/p\u003e\u003cp\u003eWe conducted a thematic analysis to interpret the interview data. Thematic analysis is a method that systematically identifies, organises and offers insight into patterned meanings within a dataset, enabling researchers to explore and make sense of participants\u0026rsquo; experiences. Our analytical process followed the six‑phase approach outlined by Braun and Clarke (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e), which involves the following:\u003c/p\u003e\u003cp\u003e\u003cem\u003ePhase 1 \u0026ndash; Familiarisation.\u003c/em\u003e ND and SRV transcribed each audiotaped interview, a process that afforded close engagement with the material. All authors then read the transcripts in full to consolidate familiarity.\u003c/p\u003e\u003cp\u003e\u003cem\u003ePhase 2 \u0026ndash; Generating initial codes.\u003c/em\u003e SRV and HHD carried out line‑by‑line open coding of all interviews using NVivo 12.\u003c/p\u003e\u003cp\u003e\u003cem\u003ePhase 3 \u0026ndash; Searching for themes.\u003c/em\u003e SRV and HHD collated related codes and drafted a preliminary list of candidate themes that captured salient features of the women\u0026rsquo;s narratives.\u003c/p\u003e\u003cp\u003e\u003cem\u003ePhase 4 \u0026ndash; Reviewing themes.\u003c/em\u003e The provisional themes were debated in depth by SRV and HHD, with segments of text extracted to evidence each theme. Where necessary, themes were merged, split or re‑labelled until the structure accurately reflected the dataset.\u003c/p\u003e\u003cp\u003e\u003cem\u003ePhase 5 \u0026ndash; Defining and naming themes.\u003c/em\u003e ND and AD applied the agreed codebook to all transcripts, cross‑checking one another\u0026rsquo;s coding and resolving discrepancies through discussion until complete agreement was reached.\u003c/p\u003e\u003cp\u003e\u003cem\u003ePhase 6 \u0026ndash; Producing the report.\u003c/em\u003e Four authors (ND, SRV, HHD, AD) refined theme definitions, ensured internal coherence and distinctiveness, and selected illustrative verbatim extracts for the present manuscript. All authors approved the final manuscript.\u003c/p\u003e\u003cp\u003e\u003cb\u003eData Security\u003c/b\u003e\u003c/p\u003e\u003cp\u003eAll data was stored on encrypted University of Oxford servers in compliance with institutional data protection policies. This included audio recordings, verbatim transcripts, and consent forms. Written or verbal informed consent was obtained from all participants prior to enrolment, including consent for audio recording and publication of anonymised quotations. Data were pseudoanonymised during the data collection period (February\u0026ndash;March 2025) and remained in this form until 1 April 2025 to allow participants the opportunity to withdraw their data. After this period, all identifying information was permanently deleted, and transcripts were fully anonymised prior to analysis.\u003c/p\u003e\u003cp\u003e\u003cb\u003eEthics\u003c/b\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eEthics approval\u003c/strong\u003e\u003cp\u003e was obtained from the Institutional Ethics Committee of Seethapathy Clinic and Hospital, Chennai, India (ECR/311/Indt/TN/2019/RR-22), and from the Oxford Tropical Research Ethics Committee, University of Oxford, UK (reference 1045729). The work was conducted in accordance with the principles of the Declaration of Helsinki. Participants were assured that they could withdraw at any time without consequence and that all information would remain confidential.\u003c/p\u003e\u003c/p\u003e"},{"header":"3. Results","content":"\u003cp\u003eThirteen married South Indian women, aged 31\u0026ndash;48 years (mean\u0026thinsp;=\u0026thinsp;37.2\u0026thinsp;\u0026plusmn;\u0026thinsp;5.5 years), participated (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Endometriosis‑related symptoms first appeared at a mean age of 24.4 years, and the definitive diagnosis was obtained 7 years later on average (range\u0026thinsp;=\u0026thinsp;1\u0026ndash;21 years). Five overarching themes were identified through thematic analysis (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eParticipant characteristics\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCharacteristic\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003en (%)\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003ctr\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003eEducation\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eUniversity (Bachelor\u0026rsquo;s\u0026ndash;PhD)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e11 (85%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSecondary school\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2 (15%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEmployment status\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePaid employment\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e9 (69%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eHouse‑wife\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3 (23%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRetired\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (8%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eObstetric history\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026ge;\u0026thinsp;1 live birth\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e9 (69%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNulliparous\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3 (23%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMiscarriage\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (8%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eSurgical treatment\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026ge;\u0026thinsp;1 surgery for endometriosis\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e10 (77%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNo surgery\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3 (23%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePerceived interference with life\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eVery much\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e12 (92%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eModerate\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (8%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eTreatment satisfaction\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eVery\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e7 (54%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eA little\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5 (38%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eModerate\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (8%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eThemes and subthemes\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTheme\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSubtheme\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1. Delayed Recognition of Endometriosis\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1.1 Trivialisation of endometriosis symptoms\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1.2 Healthcare-seeking only after marriage\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2. Fertility Anxiety\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2.1 Cultural and familial pressure to conceive\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2.2 Fear of infertility\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2.3 Apprehension toward surgical and reproductive interventions\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e3. Navigating Modern Womanhood\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e4. Healthcare Interactions\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e4.1 Trust and deference to medical authority\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e4.2 Medical pluralism and self-directed alternatives\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e5. Support and Stigma in Social Dynamics\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5.1 Concealment and disclosure\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5.2 Partners as sources of support and stress\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5.3 Social misconceptions and cultural change\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 1: Delayed Recognition of Endometriosis\u003c/b\u003e\u003c/p\u003e\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e\u003ch2\u003e1.1 Trivialisation of endometriosis symptoms\u003c/h2\u003e\u003cp\u003ePain was repeatedly described as the most debilitating and enduring feature of endometriosis\u0026mdash;many experienced symptoms from adolescence, with pain intensifying over time and severely disrupting daily life. Symptoms extended beyond menstruation, often affecting bowel movements, sexual activity, and mobility.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;Pain, severe pain. Bad mood. So much of pain, starting ten days before periods, and finishing after ten days\u0026hellip; it\u0026rsquo;s been so much of pain\u0026rdquo; (Participant 1).\u003c/p\u003e\u003cp\u003e\u0026ldquo;It\u0026rsquo;s unbearable. I can\u0026rsquo;t walk, I can\u0026rsquo;t do anything. Even when I go to the office, I sit in one place\u0026rdquo; (Participant 13).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eDespite severe symptoms, participants delayed seeking care. Pain was internalised as normal and often attributed to other causes such as digestion, stress, or family history. Family members, peers, and clinicians also reinforced the belief that menstrual pain was typical and should be endured.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;I thought it is natural.\u0026rdquo; (Participant 3).\u003c/p\u003e\u003cp\u003e\u0026ldquo;They always feel that periods are just a part of women\u0026rsquo;s life. And pain is something that we have to endure every month. So it\u0026rsquo;s not taken seriously\u0026rdquo; (Participant 11).\u003c/p\u003e\u003cp\u003e\u0026ldquo;My mother also had that type of pain... they thought the same would happen for me, so I didn\u0026rsquo;t go for treatment earlier\u0026rdquo; (Participant 8).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eUpon seeking help, many participants encountered dismissal or misattribution of symptoms by clinicians, who often normalised severe menstrual pain or attributed it to unrelated conditions.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;I used to bleed a lot and it\u0026rsquo;s unbearable... the doctor said it\u0026rsquo;s normal\u0026rdquo; (Participant 13).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e\u003ch2\u003e1.2 Healthcare-seeking only after marriage\u003c/h2\u003e\u003cp\u003eAlthough symptoms were present for years, many women sought medical care only after marriage. In most cases, this was prompted by pain during intercourse or concerns about fertility.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;It wasn\u0026rsquo;t because of the pain, it was because we are planning for a baby. So we focused on that\u0026rdquo; (Participant 1).\u003c/p\u003e\u003cp\u003e\u0026ldquo;Before marriage, we don\u0026rsquo;t usually go for a check-up... Only after marriage, since I couldn\u0026rsquo;t conceive, did I go\u0026rdquo; (Participant 8).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eIn nearly all cases, a definitive diagnosis typically occurred only after marriage prompted engagement with healthcare systems.\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 2: Fertility Anxiety\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e\u003ch2\u003e2.1 Cultural and familial pressure to conceive\u003c/h2\u003e\u003cp\u003eSeveral participants described significant cultural expectations to conceive soon after marriage, with pressure originating from family, peers, and broader societal norms. This often caused emotional stress and shaped decisions about seeking medical care.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;In Indian culture, it is always there. If you are getting married, after one month they ask, when the baby will come, when do you plan on a baby? That creates so much stress\u0026rdquo; (Participant 1).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e\u003ch2\u003e2.2 Fear of infertility\u003c/h2\u003e\u003cp\u003eThe possibility of infertility was a significant source of distress, often more troubling than the physical pain itself. Hopes of preserving fertility frequently guided treatment decisions.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;Ah, the baby only\u0026hellip; my mind is full of the baby only\u0026rdquo; (Participant 1).\u003c/p\u003e\u003cp\u003e\u0026ldquo;What if I never get pregnant? What if I lose my chance?\u0026rdquo; (Participant 6).\u003c/p\u003e\u003cp\u003e\u0026ldquo;Actually, I didn\u0026rsquo;t know it was because of endometriosis\u0026hellip; The main issue was I couldn\u0026rsquo;t conceive\u0026rdquo; (Participant 8).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003e2.3 Apprehension toward surgical and reproductive interventions\u003c/h2\u003e\u003cp\u003eSurgical and assisted reproductive options were often viewed as frightening or overwhelming. Despite this, many participants were willing to undergo interventions due to the perceived benefit for fertility.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;We thought, it\u0026rsquo;s okay, we will have the laparoscopic surgery, then I\u0026rsquo;ll be pregnant. As long as we have a baby\u0026rdquo; (Participant 1).\u003c/p\u003e\u003cp\u003e\u0026ldquo;I went to the hospital on the day (of the surgery)... Oh my god. I was scared. I wanted to cry, but I didn\u0026rsquo;t cry\u0026rdquo; (Participant 13).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 3: Navigating Modern Womanhood\u003c/b\u003e\u003c/p\u003e\u003cp\u003eParticipants reflected on the strain of balancing traditional gender expectations with aspirations around education, employment, and independence. Many felt that endometriosis intensified this tension, making it difficult to fulfil cultural expectations while sustaining personal and professional goals.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;Back then, like my mother-in-law\u0026rsquo;s time, everyone got married by 18 so getting pregnant was not a difficult thing. But now society is expecting women to be financially independent, have a higher level education and everything... But for us, we still need to have children, so we are living with this problem\u0026rdquo; (Participant 2).\u003c/p\u003e\u003cp\u003e\u0026ldquo;It\u0026rsquo;s just that I was always distracted and I could not give my hundred percent\u0026mdash;both at work and at home\u0026rdquo; (Participant 11).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eSymptoms such as chronic pain and fatigue disrupted women\u0026rsquo;s ability to participate fully in work and daily responsibilities. Employers, particularly male supervisors, were frequently described as unsympathetic or uninformed. This often led to guilt, denial of medical leave, and withdrawal from roles.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;In the workplace, no, people... they have a certain demand for every single role... I used to feel very guilty... So I just withdrew myself\u0026rdquo; (Participant 7).\u003c/p\u003e\u003cp\u003e\u0026ldquo;They didn\u0026rsquo;t know about endometriosis... They had to Google and check if I was making sense and only then they granted the leave \u0026hellip; \u0026rdquo; (Participant 6).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eParticipants emphasised the need for greater awareness and accommodation, noting that the invisibility of the condition often led to misunderstanding, stigma, and pressure to push through symptoms.\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 4: Healthcare Interactions\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e\u003ch2\u003e4.1 Trust and deference to medical authority\u003c/h2\u003e\u003cp\u003eMany participants expressed strong trust in healthcare professionals, choosing to follow medical advice without seeking detailed explanations. This trust often stemmed from a belief that medical professionals knew best, especially when facing a complex or unfamiliar condition like endometriosis.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;Actually, I don\u0026rsquo;t know the effects of it. But if it is very much required, I can go for it\u0026rdquo; (Participant 8).\u003c/p\u003e\u003cp\u003e\u0026ldquo;I didn\u0026rsquo;t think of much actually. Because my doctor said it was not something that we need to be worried about\u0026rdquo; (Participant 11).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eAlthough some participants experienced dismissal in primary care (\u003cem\u003eTheme 1.1\u003c/em\u003e), most reported that their care improved markedly following referral to specialists.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;I don\u0026rsquo;t have any concern of talking with doctors because all the doctors were supportive only, they were guiding me\u0026rdquo; (Participant 2).\u003c/p\u003e\u003cp\u003e\u0026ldquo;I think improved a lot. They actually now believe you\u0026hellip; they are familiar with such patients\u0026rdquo; (Participant 6).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec10\" class=\"Section2\"\u003e\u003ch2\u003e4.2 Medical pluralism and self-directed alternatives\u003c/h2\u003e\u003cp\u003eSeveral participants turned to complementary medicine, including Ayurveda, yoga, or homeopathy. These were pursued either alongside or in place of conventional treatment, often driven by dissatisfaction or cultural preference.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;So someone suggested we try the Ayurvedic treatment. So I went with the treatment\u0026hellip; now I am doing better\u0026rdquo; (Participant 5).\u003c/p\u003e\u003cp\u003e\u0026ldquo;Just a simple trial of homeopathy because everything else had so many side effects. Then it worked, so I continued\u0026rdquo; (Participant 2).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eSome participants expressed their frustration at the exclusion of traditional treatments from mainstream medical conversations and called for more holistic discussions in healthcare settings.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;I want doctors to acknowledge that yoga might help. IVF is expensive. Yoga is cheaper\u0026rdquo; (Participant 11).\u003c/p\u003e\u003cp\u003e\u0026ldquo;None of the doctors even talk about Ayurvedic treatments. Which is a simpler and much easier process, rather than undergoing a full-fledged surgical treatment, right?\u0026rdquo; (Participant 5)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 5: Support and Stigma in Social Dynamics\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\u003ch2\u003e5.1 Concealment and disclosure\u003c/h2\u003e\u003cp\u003eParticipants often concealed their diagnosis from family members, particularly in-laws, due to fears of blame or judgement. Disclosure was influenced by generational attitudes and perceived understanding.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"They have a typical Indian mindset. They get panicked at something if the baby can\u0026rsquo;t get what it needs. They get stressed. They blame me. \u0026lsquo;The girl has the cyst. That\u0026rsquo;s why the baby might not come.\u0026rsquo; That\u0026rsquo;s why we don\u0026rsquo;t tell the family. This is the Indian culture, you know.\" (Participant 1)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eOlder generations were frequently seen as unsympathetic, normalising severe menstrual pain and expecting uninterrupted productivity.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"Actually, the older generation still thinks that periods are just a normal thing, and we should work like any other day. \" (Participant 2)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eIn contrast, younger relatives and friends were more likely to offer empathy, encouraging disclosure and mutual support.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"My brother and brother\u0026rsquo;s wife said \u0026lsquo;Don\u0026rsquo;t care for that. First focus on your health, clear this, then the baby is next thing.\u0026rsquo;\" (Participant 1)\u003c/p\u003e\u003cp\u003e\"I did check with a lot of my friends. They have the same problems, mainly because of work.\" (Participant 6)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003e5.2 Partners as sources of support and stress\u003c/h2\u003e\u003cp\u003ePartners played a critical role in emotional coping. Some participants described strong support from their husbands, who attended appointments and provided reassurance.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;My husband has been good\u0026mdash;so that has been the very, you know, the best part because not many people around you are familiar with endometriosis symptoms.\" (Participant 3)\u003c/p\u003e\u003cp\u003e\"My husband has been with me to all my scans... he knows how much it\u0026rsquo;s affected me. He\u0026rsquo;s the one who\u0026rsquo;s taken the brunt of my mood swings.\" (Participant 6)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eOthers described the strain endometriosis placed on intimacy and everyday dynamics, particularly in the context of trying to conceive.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"After marriage, sexual intercourse started getting difficult and the pain started and only early 2019 did I realise I had endometriosis.\" (Participant 6)\u003c/p\u003e\u003cp\u003e\"If you are a couple who are trying for a baby and if it affects the daily routine in one week in a month, it\u0026rsquo;s quite bothering.\" (Participant 3)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eHowever, others feared disclosure to their partners, especially if the relationship was strained or if disclosure could lead to negative repercussions within their family.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"I haven\u0026rsquo;t told my husband, so I am not sure how he would feel. I\u0026rsquo;m scared that what if he finds out I have this problem, what if he tells my in-laws, how they will take it, that is one big question I have\u0026hellip; I am scared how he may react.\" (Participant 2)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\u003ch2\u003e5.3 Social misconceptions and cultural change\u003c/h2\u003e\u003cp\u003eParticipants highlighted a widespread lack of understanding of endometriosis. Menstrual pain was frequently dismissed as normal or exaggerated.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"So I know some people might think that I\u0026rsquo;m faking it\u0026hellip; People don\u0026rsquo;t understand what it is, and sometimes they make remarks like, \u0026lsquo;I went through the same period and we all did, and I\u0026rsquo;m not sure why it is so painful for you.\u0026rsquo;\" (Participant 3)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eCultural taboos surrounding menstruation and reproductive health created feelings of shame and social isolation.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"They will think I am not fit to be a woman... they may label me and that\u0026rsquo;s what is scaring me... many people all around us don\u0026rsquo;t even have a basic knowledge about it.\" (Participant 2)\u003c/p\u003e\u003cp\u003e\"There are very big barriers and misconceptions around the period. It\u0026rsquo;s very difficult to speak science to them.\" (Participant 6)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eDespite these challenges, several participants observed that awareness was gradually improving, particularly among educated and younger populations.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"Actually, in the educated community the perception is actually changing... at least with this younger generation.\" (Participant 2)\u003c/p\u003e\u003cp\u003e\"Now people are much more educated and they do understand what the health issues are... unlike now, where we say it\u0026rsquo;s a modern society.\" (Participant 5)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e"},{"header":"4. Discussion","content":"\u003cp\u003eThis study aimed to qualitatively examine the psychosocial impact of endometriosis among South Indian women. Five interrelated themes emerged: delayed recognition of endometriosis, fertility anxiety, navigating modern womanhood, healthcare interactions, and social dynamics shaped by stigma and support. While consistent with international evidence on the normalisation of menstrual pain and diagnostic delay (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e), our findings highlight several culturally specific patterns: delayed engagement with healthcare services until after marriage due to fertility pressures, concurrent use of biomedical and complementary therapies, and selective disclosure of the diagnosis due to stigma and fear of blame.\u003c/p\u003e\u003cp\u003eIn our sample, delayed recognition of symptoms was linked to two factors: the trivialisation of menstrual pain, which is consistent with findings from Western settings (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e), and the postponement of care until after marriage, which appears culturally specific. Delays of up to 21 years were reported, suggesting that cultural silence around menstruation, combined with pain normalisation, may substantially prolong diagnostic pathways in South India. Marriage frequently marked the point of healthcare engagement, prompted by dyspareunia or fertility concerns, reflecting sociocultural expectations to conceive soon after marriage. Fertility concerns were particularly prominent, with infertility fears outweighing pain and motivating medical or surgical interventions despite apprehensions. Fertility-related anxiety may be heightened in strongly pronatalist societies like India, where childbearing is not only highly valued but considered essential to a woman\u0026rsquo;s social status and personal fulfilment (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Failure to conceive in this context is associated with stigma, loss of status, and devaluation within family and community networks (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eParticipants described navigating dual expectations of pursuing education and employment while fulfilling traditional gender roles related to marriage and motherhood (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). Among this predominantly middle-class, university-educated sample, endometriosis exacerbated these competing pressures, limiting productivity and leading some women to conceal their condition, withdraw from work, or struggle to access medical leave. Employers were frequently perceived as unaware or unsympathetic. These findings align with broader literature on the occupational impact of endometriosis, highlighting the need for workplace policies that recognise cyclical pain, flexible scheduling, and symptom-informed accommodations (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan additionalcitationids=\"CR26\" citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eDeference to medical authority was prominent in our interviews, with participants often accepting recommendations without detailed discussion. This aligns with reports of more directive communication patterns in some Indian clinical settings (\u003cspan additionalcitationids=\"CR29\" citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e), while contrasting with patient-centred models emphasised elsewhere (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e). In this sample, trust in physicians sometimes led to premature reassurance or misattribution of symptoms at the primary care level. However, referral to specialists was consistently associated with more empathetic communication and greater validation of symptoms. Alongside biomedical care, many participants engaged with complementary therapies such as Ayurveda, yoga, and homeopathy, particularly when prior experiences with pharmaceuticals were perceived as ineffective or burdensome. This preference reflects broader patterns in India, where complementary therapies are widely used for chronic health conditions, often due to perceptions of naturalness, safety, and cultural familiarity (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e, \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eStigma and secrecy shaped how the participants navigated relationships with partners, family, and peers. Menstrual taboos and infertility-related shame limited disclosure to in-laws and older relatives. In contrast, younger relatives and peers were more likely to offer empathy and support, suggesting a generational shift in attitudes towards reproductive health. These changing dynamics reflect wider global efforts to destigmatise menstrual health and improve reproductive health literacy (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e). Participants in this study emphasised the need for better education, particularly for older women. Similar appeals for increased awareness and intergenerational dialogue have been reported in other cultural settings (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e). Interventions such as family-inclusive counselling and community-based stigma reduction programs could help facilitate open dialogues, reduce social isolation, and strengthen support systems for women living with endometriosis (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e, \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e).\u003c/p\u003e\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e\u003ch2\u003e4.1 Strengths and limitations\u003c/h2\u003e\u003cp\u003eThis study has several strengths. To our knowledge, it is the first qualitative study to explore the psychosocial impact of endometriosis among South Indian women, addressing an important gap in culturally contextualised research. Thematic analysis was conducted rigorously, with multiple researchers independently coding and refining themes, which enhanced analytical credibility and minimised interpretive bias. Supplementary interviews conducted beyond the point of data saturation confirmed thematic sufficiency and internal coherence.\u003c/p\u003e\u003cp\u003eThere are also limitations. The sample was small and recruited from a single urban clinic in Chennai, which may limit the transferability of findings to rural or less-resourced populations. All participants were married, and most were university-educated and in paid employment, underrepresenting women with lower health literacy, different marital statuses, or lower socioeconomic backgrounds. While interpreter support was used for Tamil-speaking participants, some linguistic nuance or emotional expression may have been lost in translation. As with all qualitative research, findings are shaped by both participant accounts and researcher interpretation, although steps such as reflexive team discussion, independent coding, and theme triangulation were undertaken to enhance rigour.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec16\" class=\"Section2\"\u003e\u003ch2\u003e4.2 Implications for practice, policy, and research\u003c/h2\u003e\u003cp\u003eThese findings have several implications. Clinical practice should screen for severe menstrual pain, dyspareunia, and subfertility irrespective of marital status. Partner-inclusive counselling that covers both pain and fertility goals may improve engagement. Policy initiatives should include school- and community-based menstrual health programmes targeting stigma and improving literacy, with outreach to older generations. Workplaces could implement policies recognising cyclical pain and allowing flexible scheduling. Future research should explore rural and less-resourced populations, assess the role of complementary medicine, and evaluate culturally-adapted care models that integrate patient preferences with evidence-based treatment.\u003c/p\u003e\u003c/div\u003e"},{"header":"5. Conclusion","content":"\u003cp\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eAmong South Indian women, endometriosis affects identity, relationships, and work through pain normalisation, fertility expectations, and menstrual stigma. These culturally embedded factors influence care-seeking, delay diagnosis, and shape psychosocial wellbeing. Culturally responsive clinical care, community education, and supportive workplace policies may promote earlier recognition, reduce stigma, and improve quality of life in this population.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEthics approval was obtained from the Institutional Ethics Committee of Seethapathy Clinic and Hospital, Chennai, India (ECR/311/Indt/TN/2019/RR-22), and from the Oxford Tropical Research Ethics Committee, University of Oxford, UK (reference 1045729). \u0026nbsp;The work was conducted in accordance with the principles of the Declaration of Helsinki. Written or verbal informed consent was obtained from all participants prior to enrolment, including consent for audio recording and participation in the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll participants provided written or verbal informed consent for the publication of anonymised quotations from their interviews.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets generated and/or analysed during the current study are not publicly available due to participant privacy but are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eND and SRV received travel and research support from the Royal College of Obstetricians and Gynaecologists, the University of Oxford (Magdalen College, Keble College, and the Linder Grant), and the Worshipful Society of Apothecaries.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eConception and design: ND, SRV, UR, SM\u003c/p\u003e\n\u003cp\u003eInterviews: ND, SRV\u003c/p\u003e\n\u003cp\u003eEthics application: CH, UR\u003c/p\u003e\n\u003cp\u003eData analysis: ND, SRV, HHD, AD\u003c/p\u003e\n\u003cp\u003eManuscript writing: ND, SRV\u003c/p\u003e\n\u003cp\u003eReview and approval of final draft: All authors\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors thank the women who generously shared their time and experiences for this study. We are grateful to the clinical and administrative staff at Seethapathy Clinic, Chennai, for their assistance in identifying eligible participants, arranging interviews, and providing translation support.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eParasar P, Ozcan P, Terry KL. Endometriosis: Epidemiology, Diagnosis and Clinical Management. Curr Obstet Gynecol Rep. 2017;6(1):34\u0026ndash;41.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eTsamantioti ES, Mahdy H. Endometriosis. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 [cited 2024 May 19]. 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Sex Roles J Res. 2013;68(1\u0026ndash;2):9\u0026ndash;18.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-womens-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmwh","sideBox":"Learn more about [BMC Women's Health](http://bmcwomenshealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmwh/default.aspx","title":"BMC Women's Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Endometriosis, qualitative research, South India, psychosocial impact, menstrual stigma, fertility anxiety, women’s health","lastPublishedDoi":"10.21203/rs.3.rs-7387184/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7387184/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003cbr\u003e\n \u003c/strong\u003eEndometriosis affects an estimated 10% of reproductive-aged women globally, yet remains underdiagnosed and poorly understood, particularly in low- and middle-income settings. In South India, sociocultural expectations surrounding menstruation, fertility, and gender roles may uniquely shape women’s experiences. This study explored the psychosocial impact of endometriosis on South Indian women and the cultural factors influencing their healthcare engagement.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003cbr\u003e\n \u003c/strong\u003eWe conducted semi-structured interviews with 13 women aged 31–48 years (mean = 37.2) with surgically or radiologically confirmed endometriosis, recruited from a specialist women’s hospital in Chennai. Interviews in English or Tamil were transcribed verbatim and analysed thematically using Braun and Clarke’s six-phase approach.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003cbr\u003e\n \u003c/strong\u003eFive themes were identified: (1) delayed recognition of symptoms due to pain normalisation and healthcare-seeking only after marriage; (2) fertility anxiety shaped by cultural pressure to conceive and fear of infertility; (3) navigating modern womanhood while balancing education, employment, and traditional expectations; (4) healthcare interactions, including trust in medical authority and use of complementary medicine; and (5) social dynamics characterised by stigma, secrecy, and variable partner and peer support.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions\u003cbr\u003e\n \u003c/strong\u003eEndometriosis imposes substantial psychological and social burdens on South Indian women. Culturally responsive care, public education, and supportive workplace and community strategies could improve early recognition, reduce stigma, and enhance quality of life.\u003c/p\u003e","manuscriptTitle":"The psychosocial impact of endometriosis on South Indian women: a qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-09-02 07:44:22","doi":"10.21203/rs.3.rs-7387184/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-10-08T08:15:36+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-07T15:01:36+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-09-16T00:35:57+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"44962735803549299023898244999945419911","date":"2025-09-08T02:49:15+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"315435490485823162029229765646853290313","date":"2025-09-05T14:51:32+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"224147835788422219268590957222578836530","date":"2025-09-05T09:45:55+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"336432308267994513996711206971917838973","date":"2025-08-25T07:32:46+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-08-25T06:11:43+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-08-21T15:04:37+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-08-20T00:23:46+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-08-20T00:22:49+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Women's Health","date":"2025-08-16T11:28:29+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-womens-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmwh","sideBox":"Learn more about [BMC Women's Health](http://bmcwomenshealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmwh/default.aspx","title":"BMC Women's Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"6fb2016d-fcf2-4751-95e5-a04bdc7f278e","owner":[],"postedDate":"September 2nd, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-10-23T14:23:27+00:00","versionOfRecord":[],"versionCreatedAt":"2025-09-02 07:44:22","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7387184","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7387184","identity":"rs-7387184","version":["v1"]},"buildId":"B-jG_2CBjPDmsCi4Wdhf-","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}