Experiences of women with endometriosis & their partners in India: Findings from a qualitative study

This qualitative study was undertaken by the women’s health program, The George Institute for Global Health India, after obtaining the ethical clearance from the Institutional Ethics Committee. Informed written or verbal consent was taken from each participant. The research team consisted of academicians, doctors, clinicians and researchers. The study was led by the first author (PR), who conducted the interviews in both the sites. In Delhi interviews were conducted with support from a trained consultant, a medical doctor with a background in public health. The team underwent rigorous training, with the field investigator. All interviews were conducted by female researchers. The research team engaged in discussions and employed systematic methods for data collection, coding and analysis. By acknowledging potential limitations, the authors aim to contribute to a nuanced understanding of the research topic and promote transparency. A qualitative exploratory approach was undertaken for this study. The study recruited women in the age group (18-49 yr) with laparoscopically diagnosed endometriosis from two private clinics and one private tertiary care hospitals in Assam and Delhi States. The Obstetrician and Gynaecologists in the clinics/ hospital agreed to share the patient details only after obtaining consent from the patients. The recruitment procedures outlined in the study protocol were followed to maintain privacy and confidentiality of the patients. The selected health facilities were in urban areas, but the study’s participant pool included women from both urban and rural backgrounds who sought care at these facilities. The participants in Delhi were from urban area; and women recruited in Assam were from both urban and rural areas. Women who met the inclusion criteria were contacted by the hospital/clinic staff to inform them about the study and invite their participation. Women with recurrent endometriosis and repeated surgeries were not excluded. Upon receiving participants’ approval, women were telephoned by the lead author (PR) to explain the nature of the study and confirm their participation. Maximum variation sampling approach was employed to include diverse perspectives from married and unmarried women, urban and rural areas. Face-to-face interviews were conducted in a location chosen by the participants, ensuring convenience and comfort in a private setting, with only the participant and researcher present. Telephonic interviews were conducted at participants’ preferred time. Semi-structured, in-depth interviews were conducted using interview guides. The guides were developed based on a review of published papers that explored experiences of women with endometriosis and/or male partners 10 - 14 . The interview guides covered women’s experiences with endometriosis, including symptoms, diagnosis, treatment, and support, as well as male partners’ experiences with healthcare, costs, and relationship impacts. Women and their partners were interviewed separately. Both the interview guides were pilot tested to ensure their effectiveness in gathering high-quality data. At each interview, a participant information sheet was read out detailing the study’s purpose, procedures, privacy, and confidentiality measures to the participants, and written or verbal consent was obtained to conduct and record the interview. If any participant had a query, the lead researcher addressed it before starting the interview. Each interview lasted between 40 and 90 min. Post-interview, comprehensive notes were recorded to document pertinent information, themes, and reflections. Interviews continued until data saturation. No repeat interviews were carried out, and the transcripts were not shared with participants for comments or correction. To ensure anonymity, a unique ID was allocated, and personal identifiers were removed from transcripts. Interviews were recorded and conducted in local language, either Assamese or Hindi. Only three interviews were conducted in English. The study was conducted from April 2021 to July 2024, with data collection (in-person or telephonic interviews) taking place from November 2021 to July 2022. Following the interviews, unlinked transcripts were shared with professional transcribers. Transcripts were transcribed from local language into English and checked for consistency. All transcripts were then cleaned, and analysis was conducted using Nvivo1.7.1 software ( https://lumivero.com/products/nvivo/ ). The study used thematic analysis, following Braun and Clarke’s method 15 . All transcripts were read to ensure familiarization with data, identify emerging themes, and create initial codes. All codes were brought together, and a codebook was developed that included six themes - information and knowledge about endometriosis, experience with diagnosis and treatment of endometriosis, experience with health providers, impact on lives, coping strategies and uncertainty. A codebook was developed by the lead author and reviewed by the second author. Once finalised, the lead author coded the data, and themes were identified through a combination of inductive and deductive approaches. This iterative process allowed for a comprehensive understanding of the data. After finalising the themes, categories and codes were discussed, refined and systematically applied across the entire dataset.

The study included 21 women, with 15 participants from Assam and six participants from other Indian States, including Delhi, Jaipur, Tripura and Meghalaya. Most women in Assam were from rural backgrounds ( Table ), and they accessed private facilities because diagnostic and treatment services were not readily available, necessitating travel to cities for care. Socio-demographic characteristics of the study participants Their personal and sociodemographic characteristics are listed in table along with details of their partners. Women reported that they first experienced endometriosis related symptoms at a mean age of 22.9±7.6 yr (range 13-37), and the disease was diagnosed at 29.2±4.4 yr (range: 22-38). Of 21 participants, 11 were nulliparous, five had a live birth and five had an abortion. Common symptoms included bladder pain (n=13), dysmenorrhea (n=19), heavy menstrual bleeding (n=14), dyspareunia (n=12), bowel pain and irregular bleeding in nine women each. Of 21 enrolled, 13 were diagnosed with infertility. The findings are categorised into two main areas -experience of diagnosis and seeking treatment and impact of endometriosis on women’s lives. All women reported lack of familiarity with the condition before diagnosis, misdiagnosis, often with other conditions like pelvic inflammatory disease, adenomyosis, fibroids and polycystic ovarian syndrome. Women further noted significant diagnostic delays, with time lapse between symptoms and diagnosis ranging from 0 months to 21 yr (average 6.3 yr). Delays attributed to lack of awareness about endometriosis, normalisation of menstrual pain by women, families, and friends, and healthcare providers dismissing symptoms, often suggesting pain would subside after marriage. ‘ I had a doctor in XX who I am still very angry at, he told repeatedly to get married to have children, it would cure my endometriosis .’(Woman Participant 21, 30 yr, In-depth Interview) Women’s experiences with endometriosis treatment included pain medication and hormonal therapy (discomfort and concern about side effects). According to the women, laparoscopy surgery is effective in reducing chronic pelvic pain and improving quality of life. Some women in Assam also sought alternative treatments like homeopathy, ayurveda and visited traditional healers. All women reported travelling significant distances (250 to 1,380 km) for specialist care, except one woman in Delhi. All women reported that endometriosis had affected several aspects of their lives. The impact was notably higher among women with painful periods, heavy menstrual bleeding, and infertility. Women felt misunderstood, with one stating, “No one understands my plight.” ‘ I would not be able to live my life. That’s freedom, your freedom to have children, your freedom to not have children, your freedom to work, your freedom to take off from your work, your freedom to take a break from work without worrying that how will you pay for your health expenses.’ (Woman participant 21, 30 yr, In-depth Interview) Women reported adverse emotional effects, including helplessness, anxiety, depression, frustration, loss of freedom and lack of normal life. Some reported suicidal thoughts, with one woman stating, ‘ Once I invited my husband to jump from the bridge together. ’ Two women sought psychiatric help for depression. Concurrently, women reported psychological impacts, including self-blame, attributing endometriosis to lack of exercise, poor eating habits, delayed marriage/pregnancy, and constant fear of symptom recurrence, worsening symptoms, and worry about infertility. ‘I got a dream that they [doctors] left 8 cm nodule behind my uterus, and they just forgot, and I woke up like you know I woke up like sweating because I thought my doctor told me to have another surgery and I just live in constant fear.’ (Woman Participant 21, 30 yr In-depth interview) All women reported significant uncertainty about their condition’s progression and treatment outcomes. This uncertainty was particularly pronounced among those who underwent extensive diagnostic testing, hormonal treatments, and surgery for infertility. We observed that women experienced significant emotional and psychological challenges, marked by apprehension and uncertainty about their future. ‘I am undergoing treatment for so long. But I don’t see any hope not sure whether this disease (endometriosis) will be cured or not.’ (Woman Participant 6, 30 yr, in-depth interview) Relationships, and social life: Women reported facing complex challenges in their relationships. While some partners are supportive and understanding, many women experienced relationship tensions due to painful intercourse and decreased intimacy. The physical symptoms of endometriosis, such as bleeding during or after sex, led to avoidance of intimacy, affecting closeness with their partner. Furthermore, difficulty in conceiving and undergoing infertility treatment caused constant worry and feelings of inadequacy, impacting emotional well-being. ‘Sometimes he gets angry otherwise there is nothing, he supports. We do not engage in intercourse even if we want to, I know the bleeding problem will start again.’ (Woman Participant 7, 27 yr, in-depth interview) In addition to relationship challenges, women reported social isolation due to debilitating symptoms and fear of public embarrassment. Many women reported reduced social participation, feeling a lack of control over their lives and bodies. ‘I just hung out by myself. I tried to cheer myself you know.’ (Woman participant 19, 36 yr, in-depth interview) Unfortunately, a few women also reported facing stigma and misconceptions, particularly those with heavy menstrual bleeding or infertility. They were blamed for poor hygiene, ridiculed for their symptoms, or ostracized due to their inability to conceive. These experiences led to feelings of powerlessness, emotional distress, and social exclusion. ‘I come across such people in the society who say that their day is spoiled if they happen to see my face. I have faced such situation many a times. Not being able to bear a child is the ultimate impact of Endometriosis.’( Woman Participant 4, 33 yr, In-depth Interview ) We found profound impact of endometriosis on women’s daily lives, particularly in their educational and professional pursuits. Women with dysmenorrhea and heavy bleeding reported that their symptoms significantly affected their focus and productivity in school, often resulting in missed classes during menstruation. Moreover, some young women found that endometriosis hindered their plans for higher education, forcing them to put their academic and career aspirations on hold. In the workplace, both homemakers and working women experienced disruptions due to endometriosis symptoms, with working women being particularly affected by dysmenorrhea. This led to job quits, frequent sick days, and declined opportunities, ultimately impacting their career advancement and stability. ‘ My planning was to do PhD. There were many other plans, and I am unable to pursue them.’ (Woman Participant 4, 33 yr, In-depth Interview) The inflexible nature of many work environments further exacerbated these challenges, prompting some women to seek part-time or freelance work that offers more flexibility during their menstrual cycles. However, even in these roles, women struggled to balance their work and household responsibilities, especially when living with in-laws. ‘ Away from work and taking leave every month, you know, it really affects, and your job is at stake’ (Woman Participant 1, 41 yr, In-depth Interview) Women reported facing a significant financial burden due to treatment costs. The costs vary widely, ranging from INR 3,000 per hormonal injection to INR 1,20,000 per surgery, with notable regional disparities ( e.g ., higher surgery costs in Delhi compared to Assam). All women reported substantial financial strain, resorting to various means to cover treatment costs, including using household income, savings, or selling assets, and taking loans or credit. Notably, even women with insurance coverage faced challenges with reimbursement, highlighting the need for more comprehensive and accessible healthcare financing options for women with endometriosis. Figure 1 provides a visual representation of the interconnected factors that impact women’s experiences with endometriosis, based on the study’s findings. Interconnections of factors. Women’s lived experiences with endometriosis and impacts on their lives. Source : It is generated by the authors based on the findings of this study. All women reported developing various coping mechanisms to manage their condition. These include lifestyle changes such as exercise and dietary modifications, self-management techniques like pain relievers, home remedies ( e.g ., turmeric in water), and heat therapy (hot water bottles), and adopting a positive attitude by accepting the condition and focusing on life’s positives. Notably, some women relied heavily on pain management, highlighting the need for comprehensive support and effective pain management strategies. ‘How am I coping? by continuously having painkillers I’m coping, what else other than that?’ (Woman Participant 5, 42 yr, In-depth Interview). All men interviewed were unfamiliar with endometriosis until their partner’s diagnosis, revealing a notable knowledge gap among men about this prevalent women’s health issue. Men reported significant emotional distress, characterized by feelings of helplessness, anxiety, and frustration, particularly when witnessing their partner’s pain or navigating infertility treatments. Despite these challenges, the men expressed deep concern for their partner’s physical and emotional well-being, often prioritising their partner’s needs. As one participant poignantly stated, ‘ I feel like dying when I see her pain, I feel really bad and frustrated, ’ highlighting the profound emotional impact of endometriosis on male partners and underscoring the need for greater support and understanding for these individuals. Men reported that the condition affects their sexual relationship, but not their emotional bond with their partner. While some men noted a decrease in sex frequency, they attributed this to a desire to prioritize their partner’s comfort and avoid exacerbating pain. Many men demonstrated empathy and understanding, adapting their approach to intimacy to accommodate their partner’s needs. However, some men also expressed uncertainty about their partner’s experiences, with one participant noting that his partner might be hiding the extent of her pain during intercourse, highlighting the complex dynamics and potential communication challenges that can arise in intimate relationships affected by endometriosis. ‘She does feel pain during intercourse, but she will not tell me clearly, may be because she thinks that I will not like it.’ (Male participant 5, 42 yr, in-depth interview) Men reported experiencing significant financial strain due to treatment costs, with fertility treatment being the most substantial burden. The financial impact is profound, with most men incurring out-of-pocket expenses that deplete their savings or lead to debt. Only a few men benefit from health insurance, leaving many to bear the brunt of costs. As one participant starkly illustrated, ‘ I spent all my salary on the disease (endometriosis) and borrowed from others as well. We had some land but sold it; We had to sell cows and goats,’ highlighting the severe financial sacrifices made by these men to support their partner’s care. Men reported often taking on caretaker roles, demonstrating their commitment to supporting their family. These men adapt to new responsibilities, such as managing household chores, childcare, and accompanying their partners to medical appointments. During episodes of severe pain, some men even assume primary care giving duties, including cooking and other domestic tasks. As one participant shared, ‘ I do everything on my own. She stays on bed for around 10 days when the pain occurs. I cook and all ,’ highlighting the significant role men play in caring for their partners and the ways in which they prioritise their partner’s well-being. Figure 2 highlights the shared impacts of endometriosis on women’s and men’s lives, as identified through in-depth interviews, providing insight into the commonalities in their experiences. Impact of endometriosis on women and their partners. Source : It is generated by the authors based on the findings of this study.

The study’s findings align with global research, highlighting common themes-normalisation of pain, lack of knowledge about endometriosis, diagnostic delays, concerns about infertility and uncertainty, and impact on various aspects of life (work, education, social life, psychological well-being) 10 , 11 , 13 , 16 . Our findings suggest that the impact of endometriosis varies based on time to diagnosis, pain severity, coping mechanisms, and treatment approaches. Concurrently, the study’s themes highlights the stigma of infertility in India, where childlessness is often seen as a personal failure, a phenomenon also relevant to other South Asian countries 17 . The Indian public health system largely overlooks issues of infertility, and this neglect can lead to delayed diagnosis, inadequate treatment, and significant physical and emotional distress for women. The lack of priority given to reproductive health issues, coupled with societal pressures and stigma surrounding infertility, exacerbates the challenges faced by women with endometriosis, highlighting the need for improved awareness, accessibility, and quality care within the health system 18 , 19 . The study also highlights the complexities women with endometriosis face in India’s pluralistic health system, where they often seek care from multiple providers, including traditional and alternative practitioners. The study findings also suggest that endometriosis treatment in India imposes a significant financial burden due to high out-of-pocket costs, limited local specialist care, and costly private healthcare services. Endometriosis significantly impacts women’s lives, altering their life trajectory. Early diagnosis is crucial for reassurance, validation of symptoms, and timely intervention 7 . However, India’s most women face challenges in diagnosing and managing endometriosis, leading to delays. Strengthening public health facilities is essential, especially since 70 per cent of women reside in rural areas 20 and much of the population relies on the public health system for first-line prevention and care. Addressing endometriosis in a holistic, population-based approach to women’s health is crucial. Study findings highlighted health system barriers to gynaecological care, such as limited access to specialists, inadequate infrastructure for diagnosis, lack of standardised protocols for treatment, insufficient training for healthcare providers and poor referral systems for endometriosis care. Accordingly, developing national guidelines for early diagnosis and treatment within the public healthcare system would be a key step. The recently released (2023) Ministry of Health and Family Welfare National Guidelines to prevent unnecessary hysterectomies 21 provide a valuable framework for improving gynaecological care, including addressing endometriosis and improving women’s health. We recommend for a multidisciplinary approach to provide holistic diagnosis, treatment and care at a population level. Enhancing primary healthcare teams’ skills and establishing women-focused clinics, like Sri Lanka’s Well Women Clinics 22 , can facilitate early diagnosis and treatment, improving women’s quality of life. Raising community awareness about endometriosis is crucial 23 , such as through engaging civil society organizations, leveraging platforms like school health programme and village health and nutrition day, and engaging women’s self-help groups to raise awareness of gynaecological care and reducing stigma 24 . The study’s findings also emphasize the need for future research on the mental health impacts on women with endometriosis, and include partners, who are also significantly affected. There is also a need to study the economic burden of endometriosis. Endometriosis needs to be recognized as a public health concern that can be addressed through a comprehensive women’s health approach to policy and programmes. Increased recognition will catalyze awareness efforts, inform healthcare provider training, and guide the development of standardised guidelines for early detection and effective management. The wide-reaching impacts of endometriosis on the lives of women and their partners warrant a holistic approach, both within and beyond health care settings. This study has limitations, including small sample size (21 women, 10 men) from two sites, focus on private health facilities, potentially excluding those with limited resources, and inclusion only of women who underwent laparoscopic surgery, excluding those without access to surgical diagnosis or fertility treatments. Despite these limitations, the study provides valuable insights into endometriosis’ impact on women and their partners, informing future research in India.