Abstract
Background:
The COVID-19 pandemic posed unique challenges for Asian people living with endometriosis. The purpose of this study was to describe the endometriosis-related coping and self-management strategies used by South, East, and Southeast Asian women living in British Columbia, Canada, during the COVID-19 pandemic and how these contributed to their strength and resilience.
Design and methods:
Using photovoice methodology, South, East, and Southeast Asian women residing in a Western Canadian province were invited to generate photographs representing their experiences of living with endometriosis during the COVID-19 pandemic. Photographs were discussed during semi-structured interviews, and data were thematically analyzed.
Results:
Women (n = 22) conveyed that during the COVID-19 pandemic: (1) their social support context played a pivotal role in shaping their experiences and ability to cope with and self-manage their endometriosis, which involved (2) taking empowering actions in daily living, accessing healthcare, and acquiring knowledge. (3) Taking empowering actions fostered a sense of inner strength and resilience characterized by advocating for self and others, carrying forward empowering actions to other life domains, and cultivating gratitude and hope for their future.
Conclusions:
East, South, and Southeast Asian women demonstrated a resilience approach to living with endometriosis during the COVID-19 pandemic. By drawing on support systems and coping and management strategies, they built resilience mechanisms that promoted well-being and sustainability.
Introduction
Endometriosis is a chronic pain condition affecting approximately 10% of reproductive-age women 1 and an unmeasured number of gender-diverse people. It occurs when endometrial-like glands and stroma – which are similar to those that normally line the inside of the uterus – are found outside of the uterus, most commonly in the pelvic cavity. 1 Symptoms of endometriosis include chronic pelvic pain, lower back pain, and abdominal pain, as well as pain with menstruation (dysmenorrhea), bowel movements, and sex. Infertility also affects up to half of those with endometriosis. 2 The burden of endometriosis can be considerable, with affected individuals reporting decreased quality of life and psychological distress associated with feelings of worthlessness, hopelessness, guilt related to their partner, loss of femininity, loss of control over their body, and changes in body image.3,4
Like other acute and chronic illnesses, endometriosis-related healthcare services were disrupted by the COVID-19 pandemic. In 2020, to redirect resources to care for patients with COVID-19, endometriosis surgeries and other non-essential/elective surgeries were temporarily halted across Canada and in many other countries. 5 Many endometriosis-related outpatient appointments with family physicians, specialists, and allied healthcare professionals were canceled, postponed, or transitioned from in-person to virtual appointments. 5 A meta-analysis of 17,799 individuals indicated that almost half reported decreased access to medical care during the pandemic. 6 Many also experienced new, increased, or worsening physical and psychological symptoms, namely dysmenorrhea (49.3%), pelvic pain (58.1%), fatigue (68.9%), anxiety (75.0%), and depression (59.4%). 6 In two other studies, German women with endometriosis reported less social support from their partner, family, and friends, and increased social and emotional vulnerability, which contributed to increased susceptibility to mental health disorders.7,8
Several studies have reported a significantly higher prevalence of endometriosis in Asian women compared to other ethnicities.9 –11 Moreover, Asian women of Filipino, Japanese, Indian, and Korean descent demonstrate the highest prevalence of endometriosis relative to Caucasian women. 10 The COVID-19 pandemic also appears to have affected people from various racial or ethnic groups differently, including those with endometriosis. People of Asian descent experienced specific challenges stemming from the geopolitics of the pandemic, anti-Asian racism and discrimination, and travel restrictions.12,13 For example, Asian Canadians in a qualitative study reported feeling unsafe owing to the uncertain, unexpected, and unpredictable nature of discrimination, however, they also reported a strong sense of belonging to Canadian society and connection to their Asian Canadian communities. 12 Higher incidences of acute discrimination encountered by East Asian Canadians (Chinese, Japanese, and Korean) were also found to explain their higher levels of mental health symptoms compared to white Canadians. 13 Conversely, a study of Chinese/Taiwanese individuals in Canada with chronic pelvic pain and/or endometriosis reported less impact on mental health compared to other ethnic groups. 14
Given the context of the pandemic, considerable burden of endometriosis on individuals, higher prevalence of endometriosis in South, East, and Southeast Asian groups, and unique challenges facing Asian individuals during this time, we conducted a photovoice study centered on the mental health challenges and healthcare interactions of Canadian individuals from South, East, and Southeast Asian backgrounds during the COVID-19 pandemic. Please note that we most often use the term “Asian” to refer to previous literature on Asian experiences. Since we did not include all Asian groups (e.g. West Asian) in this work, we use the terms South, East, and Southeast Asian to represent our specific research population.
People with endometriosis have previously reported the use of efforts that address the problem itself (problem-focused coping) or alleviate emotions arising from the problem (emotion-focused coping). 15 When compared to those with maladaptive coping, those who engage in positive, problem-focused coping report lower stress levels and less depressive symptoms, resulting in less pelvic pain and dysmenorrhea. 16 Self-management coping strategies are often considered critical, 17 with self-management referring to physical or psychological techniques, strategies, or lifestyle interventions that individuals administer or perform themselves to address endometriosis symptoms.18,19 Commonly reported and recommended endometriosis self-management strategies include heat, rest/sleep, meditation, relaxation or breathing exercises, diet, exercise, self-care activities, cannabis use, social activities, and connecting with social supports.18 –20
Despite this research, there is limited evidence specific to the novel COVID-19 pandemic context and Asian women’s experiences of endometriosis. This is especially important considering that, historically, endometriosis research has predominantly included white women, with minimal data on minority groups. 21 Thus, the analysis reported here aimed to describe the endometriosis-related coping and self-management strategies used by South, East, and Southeast Asian women living in Canada during the COVID-19 pandemic that contributed to their strength and resilience.
Methods
For the broader study and analysis that we report on in this manuscript, we employed photovoice methodology, a qualitative approach rooted in community-based and participatory action research traditions, where individuals affected by an issue generate and narrate photographs depicting their experiences and perspectives. 22 Historically, photovoice has been used to help give voice to individuals and communities who are underrepresented and/or experience marginalization. This approach was chosen because endometriosis and its symptoms are often experienced as “invisible,” stigmatizing, and difficult to discuss. 23 Photovoice is well-suited to facilitate discussions of stigmatized or hidden conditions that individuals may struggle to disclose or convey using conventional interviews that rely solely on spoken words. 24
This project was co-developed by the Patient Research Advisory Board (PRAB) affiliated with the Endometriosis and Pelvic Pain Lab at the University of British Columbia. The PRAB consisted of nine patient partners with lived experience of endometriosis. Two patient partners with lived experience of endometriosis fulfilled roles as patient collaborators on this project. 25 That is, patient partners were research team members, not study participants. Patient partners were included in team meetings, assisted in grant writing and were co-investigators on the grants, co-developed the study recruitment strategy and data collection tools, and assisted in final data analysis and knowledge translation activities. Collectively, our team also had clinical expertise in endometriosis care, research expertise in pain, endometriosis, sexual health, self-management, as well as qualitative methodological expertise, including photovoice. Ethics approval for the study was obtained from the University of British Columbia Children and Women’s Research Ethics Board (H22-02390), and all participants provided informed consent.
Participants and recruitment
Participants were individuals whose self-identified ethnicity was East Asian (China, Hong Kong, Japan, Macau, Mongolia, North Korea, South Korea, and Taiwan), South Asian (Afghanistan, Bangladesh, Bhutan, India, Iran, Maldives, Nepal, Pakistan, and Sri Lanka), and/or Southeast Asian (Brunei, Cambodia, East Timor, Indonesia, Laos, Malaysia, Myanmar, Philippines, Singapore, Thailand, and Vietnam). We were guided by the Canadian Institutes of Health Information’s definition of ethnicity as a multi-dimensional concept referring to community belonging and a shared cultural group membership. 26 Additional inclusion criteria were: 19 years or older; resided in British Columbia, Canada; English speaking; a diagnosis of endometriosis (self-report); and living with a diagnosis of endometriosis during the COVID-19 pandemic. Self-report is considered a reasonably accurate way to assess endometriosis status. 27 We considered March 2020 the start of the COVID-19 pandemic, aligning with the World Health Organization’s declaration of a global pandemic and the public health orders that came into effect in British Columbia, Canada. We did not define a pandemic end date; participants were encouraged to recall their experiences up until their interview date (the last interview was in July 2023).
We used two recruitment strategies: first, convenience sampling involved the recruitment of individuals from the Endometriosis Pelvic Pain Interdisciplinary Cohort Data Registry (EPPIC; Clinical Trials.gov NCT02911090) and Endometriosis and Pelvic Pain Clinic at the BC Women’s Hospital. Two hundred individuals met our registry screening criteria, all of whom were contacted via email and invited to participate in this study. Second, we recruited community members by distributing flyers on social media channels, endometriosis Facebook pages, and through an online platform connecting British Columbia research participants with investigators (REACH BC). Individuals who expressed interest in the study via email (n = 31) were then contacted by a research assistant by phone to provide additional study information, answer any questions, and ensure inclusion criteria were met. None of the participants in this study had an established relationship with the research team members prior to the study’s commencement.
Data collection
After obtaining informed consent, participants were asked to complete two online Qualtrics forms: a demographic questionnaire and a form where they could submit photographs and accompanying captions that they had generated representing their experiences of endometriosis during the COVID-19 pandemic. Each participant was invited to generate and submit 8–10 photographs with 1–2 sentence captions for each photograph. These photographs were then used to guide individual, semi-structured interviews that were conducted approximately 2 weeks after participants completed the photovoice assignment.
Individual semi-structured Zoom interviews were completed between March 2023 and July 2023 by three female team members (N.M. – MSc, Research Assistant, A.F.H. – PhD, Associate Professor, K.M. – MN, PhD Student), all with prior experience interviewing women for qualitative research. Prior to starting the interview, interviewers introduced themselves to interviewees by disclosing their occupation and role in the study. During the interviews, interviewers displayed each photograph and asked the participants to describe the photos and the relationship of the photos to their experiences with endometriosis during the COVID-19 pandemic (see A1 to view the interview script). The semi-structured interview format allowed for conversational freedom and interviewers encouraged participant elaboration using prompts and follow-up questions. Interviewers made field notes during and after each interview to highlight key aspects of the conversation for data analysis. Interviews ranged from 42 to 92 min, averaging 67 min. Participants received a $100 e-gift card honorarium. All interviews were audio recorded and transcribed verbatim by a machine transcription service (Temi), quality checked for accuracy and de-identified by a member of the research team (H.R.). We then inserted the photographs into the corresponding interview transcript text to enable analysis contextualized around participant photographs and their intended meaning. We did not carry out any repeat interviews and transcripts were not returned to participants for further commentary.
Data analysis
Data analysis was completed using a multi-phase interpretive thematic approach, aided by data management software NVivo™ version 14 and concept diagramming software Miro. We approached our data from a constructivist angle that recognizes subjectivity. Following the completion of the first three interviews, and then throughout the analysis process, team members met bi-weekly to identify and discuss initial and evolving insights gleaned from conducting the interviews and reviewing the transcripts and photographs. After completing the fifth interview, we inductively identified broad descriptive codes to capture emerging patterns and noteworthy ideas or examples that we grouped and regrouped to develop into an initial broad coding framework. Three research team members (N.M., K.M., H.R.) then coded subsequent transcripts. During this early phase of analysis, we identified two broad codes that became the foundation for the analysis we report on here: managing or coping with endometriosis and health – strengths, resilience, and ingenuity of people with endometriosis; and positives/growth – good things that happened or came out of the pandemic while having endometriosis. Instead of being guided by the concept of data saturation, we (N.M., A.F.H., K.M.) used our interpretative judgment and the input of patient advisory board members to determine that our data collection and analysis had produced a robust and insightful description of endometriosis-related coping and self-management strategies.
The first author focused the analysis specifically on how South, East, and Southeast Asian women coped and self-managed their endometriosis symptoms and developed strength and resilience during the pandemic. Related to this focus, the first author then inductively analyzed the broadly coded data, identifying preliminary categories and themes that were grouped and regrouped until we were confident the findings’ organizational structure represented the data. This process was greatly enhanced by conceptual diagramming using Miro software and ongoing team member discussion. Two patient partners also contributed to data analysis by providing insights into the resonance of the findings with their own experiences, identifying key aspects of the findings to highlight, and advising on how to sensitively portray the experiences of study participants.
Results
Of the 27 South, East, and Southeast Asian women who consented to participate in this study, a total of 22 participated in the photo activity and interview. A summary of self-reported ethnic identity of these 22 women is shown in Figure 1. The five women who consented to participate in the study, but did not complete the photo activity nor the interview, were all lost due to non-responsive email correspondence. All interviewed participants identified as cisgender, and the majority identified as heterosexual (77.3%), educated with a graduate or professional degree (68.2%), residing in an urban area (81.8%), currently employed (72.7%), and in a long-term relationship (59.1%). Demographic information of interviewed participants can be found in Table 1. All interviewed participants self-reported that they were diagnosed with endometriosis by a healthcare provider, and the majority indicated experiencing dysmenorrhea (pain during menstruation; 95.5%), dyspareunia (painful sex; 59.1%), dyschezia (painful bowel movements; 77.3%), and chronic pelvic pain (90.1%). See Table 1 for further participant sociodemographic and medical characteristics.
Participant characteristics.
The two participants who selected other indicated that they were self-employed and on medical leave from their full-time position.
Number of participants that endorsed each option. Note that multiple options could be selected.
No bleeding.
No insertive sexual activity.
Summary of ethnic identity of participants.
From women’s narratives and photographs, we identified three themes that highlight key features in the pathway to resilience. South, East, and Southeast Asian women with endometriosis conveyed that, during the COVID-19 pandemic: social support played a pivotal role in shaping experiences of endometriosis (1), empowering actions enabled them to cope and manage (2), which fostered inner strength and resilience (3). See Figure 2 for an overview of themes.
Overview of three themes describing key features in the pathway to resilience.
Social support: Contextualizing coping and resilience
The narratives and photographs of women with endometriosis underscored the pivotal role of social support in shaping their experiences with the condition; influencing their ability to cope with and self-manage their endometriosis and to build resilience. How support was provided to and received by women with endometriosis appeared to vary depending on: (1) the closeness/proximity of the relationship with the support provider and (2) the characteristics of the support provider.
Women often indicated that the individuals in their social networks whom they were closest to, primarily friends, family, and partners, facilitated their ability to perform daily activities such as work, social engagements, and self-care. Closeness appeared to be a combination of physical proximity, time spent together, and depth of the relationship. More distal supports seemed to include others with endometriosis or understanding and empathetic coworkers, who were described as fostering a sense of camaraderie and community outside their homes. The women’s photos and commentary highlighted emotional support (e.g. empathy, listening, validation, patience), and tangible support (e.g. providing goods, completing tasks, granting time off work, providing education) provided by both close and more distal relationships. For instance, one woman described the emotional support and encouragement to undergo surgery that she received from an understanding and reassuring colleague who had benefited from surgery for her endometriosis. Another woman described the tangible support her parents, who resided outside of Canada, provided in preparation for her endometriosis surgery (see Figure 3, Photograph 1).
Social support: contextualizing coping and resilience.
A combination of emotional and tangible support was exemplified in a photo of a woman’s monthly massage by her husband, where she wrote, “My husband would massage my back and abdomen every month when I have my period. It does help me to feel better with the pain.” (40-year-old, East Asian woman)
Women’s narratives and photographs also highlighted how the characteristics of individuals providing social support – especially cultural norms and religious beliefs, knowledge related to health and endometriosis, and family history, gender, and age – influenced how support was provided to, and perceived by, women with endometriosis. The majority of women framed certain cultural norms and religious beliefs upheld by those in their social support network as rather unsupportive; these included valuing motherhood and traditional women’s roles, stoicism related to health, formality in conversing with elders, and limited openness in discussing women’s health. Similarly, women highlighted their frustrations when individuals in their support network conveyed limited knowledge related to health and disability in general, and endometriosis and chronic pain specifically. For example, one woman shared a photograph of a church in the Philippines, symbolizing how her family's cultural norms, religious beliefs, and limited medical knowledge of endometriosis left her feeling like her pain and priorities were discounted (see Figure 3, Photograph 2). She described her family wishing for fertility restoration regardless of her concerns about fertility and their reliance on prayer instead of biologically-based interventions.
Additionally, the gender and age of the support person were seen to intersect with cultural norms and assumptions. For instance, one woman described how discussions about endometriosis tended to be limited with older family or community members with traditional cultural attitudes due to expectations around communication and the perceived taboo of discussing sensitive or personal topics. I think just because of these notions around respect and how formal you sometimes are when you're talking to somebody who's Asian and older than you, et cetera. There just seems to be a few topics that tend to be off limits (33-year-old East Asian, Latina, and Middle Eastern woman)
In contrast, women commonly noted that relatives with an endometriosis history, particularly mothers, other women, and younger people, were more likely to convey understanding and show empathy toward their endometriosis experiences. Open communication with relatives who had endometriosis, especially mothers and grandmothers, was framed by many women as key to understanding their condition and markedly shaped subsequent enabling strategies. My mother who first said, are you sure this couldn't be - like to the doctor in the hospital initially- endometriosis? . . . I definitely feel like my family history has made a difference. . . . made it less scary, less intimidating because my mom had been through it, my grandma had been through it. . . I'd say that there's never any like shame or fault around it in my family. (37-year-old, East Asian & White woman)
Several women described how talking to other women with severe pelvic pain also helped them feel less alone and more understood compared to discussions with men or boys, who were perceived as less able to understand or relate to their experiences or how to support them. Support also came from pets, with multiple women expressing deep gratitude for the comfort, support, and companionship they afforded, especially when women were experiencing pain. Women shared that even when their closest human connections were available, the presence of a deeply supportive animal companion brought tremendous comfort, often not afforded by individuals. Along with a photo of her dog embracing a stuffed animal, one woman wrote that “he comforted me even when no one understands what I have been through,” explaining that “sometimes on a good day I can be kind of positive and I can hold myself together to do things. On the bad days, I just cry. I just don't want anybody but my dog.” (42-year-old, Southeast Asian woman)
Women’s social support networks appeared to set the stage and influence the capacity and ways in which the women took empowering actions to cope with and self-manage their endometriosis. Women positioned emotional and tangible support from others to bolster their confidence and ability to engage in empowering actions and resilience, while the lack of support left women feeling on their own. However, women also described how they actively influenced their support networks. Many noted that the restrictions imposed by the COVID-19 pandemic that limited their social interactions and social circles provided a unique opportunity to reassess their social priorities. This re-evaluation of their social networks led some to prioritize positive relationships, “cut out toxic people,” (32-year-old South Asian woman) distance themselves from unsupportive individuals and seek out or discover new sources of support.
Of note, while social support played a significant role, some women also indicated that others “can't fight your battles for you” (40-year-old Southeast Asian woman). Rather, they described tapping into their inner strength and agency to try to self-manage and cope with their illness, which bolstered their self-efficacy and self-worth, as exemplified by one woman’s photograph and caption titled “Different is cool” (see Figure 3, Photograph 3).
Empowering actions in daily living, accessing healthcare, and acquiring knowledge
Descriptions of empowering actions women took related to their endometriosis were commonly framed as requiring individual agency and resulting in a greater capacity to undertake further empowering actions. The restrictions related to the COVID-19 pandemic influenced women’s abilities to take empowering actions across three areas of their lives: daily living, accessing healthcare, and acquiring knowledge.
Daily living: Planning ahead, artful practices and easing physical symptoms
In daily living, commonly highlighted empowering actions manifested as planning ahead, artful practices, and easing physical symptoms. These actions helped women prevent and mitigate endometriosis symptoms, especially pain, and to complete daily activities, whether they be personal, family, or work-related. Oftentimes, empowering actions the women indicated they enacted in their daily lives stemmed from cultural or family norms or practices, as described by one woman: When I'm having a period, I try to drink more hot water to keep my body feeling better. I don't know whether it really helps significantly. But due to my Chinese background, we are always recommended by parents, grandparents to drink hot water during period. (40-year-old, East Asian woman).
During the COVID-19 pandemic, women conveyed that spending more time at home with fewer expectations for in-person interactions with family, friends, and coworkers allowed them more time and capacity to engage in empowering activities in their daily lives. However, they were also highly reliant on these empowering actions due to the loss of other coping and self-management strategies, such as access to social engagements, recreational activities, and professional healthcare services.
Planning was often positioned as necessary for attending to all aspects of life and included taking a proactive approach to detailed scheduling, always creating backup plans, trying to have a realistic mindset about what they could accomplish or feel good doing, and explicitly planning activities to look forward to. For example, one woman shared a photograph of her home setup and caption depicting how she expected endometriosis could interrupt her plans for romantic activities with her husband, thus requiring a backup plan. A date with my husband has a plan B in case of how I end up feeling. Plan B is hanging out on the couch with a heating pad, a movie, hot chocolate and our cat. (39-year-old South Asian woman)
Artful practices were another significant form of empowerment. These included creative practices and expressions, such as journaling, writing, photography, and videography. Some women suggested that they found solace, a sense of control, and emotional benefits through these activities, which contributed to overall well-being, as depicted by a photograph of art created by one woman (see Figure 4, Photograph 4).
Empowering actions in daily living, accessing healthcare, and acquiring knowledge.
Women also conveyed that their use of various activities, such as practicing yoga, taking medication, taking baths, using hot water bottles, and lying down, were essential for managing symptoms sufficiently to allow women to carry out their daily responsibilities. Like several participants, one woman’s photo and caption highlighted bathing as an endometriosis-related coping strategy that helped ease her physical symptoms and enabled her to work, albeit from her bathtub (see Figure 4, Photograph 5). However, as highlighted by this woman, reliance on these strategies during the COVID-19 pandemic could simultaneously feel constraining and contribute to a sense of monotony and stagnation in their lives. This duality of finding relief yet feeling constrained underscored the complex impact of the pandemic on women’s overall well-being.
Accessing healthcare
Women highlighted empowering actions they took when interacting with the healthcare system related to their endometriosis during the COVID-19 pandemic. These actions included seeking healthcare despite previous dismissals and finding healthcare providers that better met their needs. Given past experiences of feeling dismissed, invalidated, and disregarded when communicating about endometriosis symptoms with healthcare providers, women seemed to steel their resolve and muster the courage to seek care in what was perceived as an often-uncaring environment. Feelings of vulnerability inherent in needing healthcare provider support were commonly described, as was the courage required to overcome the anticipation of another poor interaction. One woman’s photograph of her arm with an intravenous line was accompanied by a caption describing the vulnerability people experience in seeking support and healthcare (see Figure 4, Photograph 6).
Other women shared their positive experiences of interacting with healthcare providers knowledgeable about endometriosis, who listened and conveyed a sense of understanding. This type of validation was pivotal for women, as exemplified by one woman’s description of the importance of her gynecologist who “acknowledge what I was going through and what I had gone through. I really felt heard by her and she was able to validate what I was feeling and understand what I was feeling. . . that's really when the tables turned for me.” (27-year-old, South Asian woman)
Some women described realizing that their endometriosis-related healthcare needs were not being met and taking the initiative to seek out alternate services or switch healthcare providers. Healthcare providers who were women, of the same cultural background or racialized, as well as those who conveyed empathy, compassion, knowledge, and honesty seemed to be considered by women as bolstering their ability to cope with and self-manage their endometriosis. I think I need a racialized woman to be my therapist. . . it’s just very hard to have to explain your experiences all the time. It's similar to the walk-in clinic, feeling like every time that you go in, you have to explain yourself. (33-year-old, East Asian, Latina, and Middle Eastern woman)
Acquiring knowledge
Taking empowering actions to cope with and self-manage endometriosis was further enacted by acquiring knowledge about the condition during the COVID-19 pandemic. Women characterized their knowledge of their disease and associated treatments as powerful; understanding what was happening in their bodies and the intricacies of possible treatments provided them with a sense of control and helped them make informed choices regarding endometriosis self-management and treatment plans. One woman indicated that learning about pelvic pain and self-management strategies provided some symptom relief, improved her quality of life, and gave her a sense of control over the disease and her life. Understanding what are some of the other things that I could be doing to improve my quality of life gives you back a sense of control, right? I'm no surgeon, I'm no doctor, [. . .] but I certainly can do things to make my life a little bit better or cope with it better. (33-year-old, East Asian, Latina, and Middle Eastern woman)
Several women also shared how the restrictions associated with the COVID-19 pandemic granted them more time to research symptoms and side effects of treatment options, such as pain medications, surgery, or assistive reproductive technologies, and to make decisions that aligned with their values. Accompanying a photograph of the moment after her child’s birth, one woman wrote about how her extensive research into possible infertility allowed her to understand her lower odds of becoming pregnant and to mentally prepare should that not happen. COVID allowed me extra time to research in detail my every symptom and side effect, and I prepared myself mentally for every worst possibility as a result of endometriosis. One of the worst possibilities was not becoming a mother. Fortunately, I could conceive naturally, and it felt like a miracle when I held my baby for the first time. (32-year-old, South Asian woman)
Building resilience
The significant emotional and physical burdens of living with endometriosis were certainly conveyed by the women in this study. However, accompanying descriptions of these challenges were narratives and photographs that portrayed how the women used empowering actions to build personal resilience. They appeared to be capacity builders – learning to advocate for themselves and others, carrying forward empowering actions to other aspects of their lives, and cultivating gratitude and hope for their future.
Advocating for self and others
Women frequently reported that their prolonged experiences navigating their symptoms and the healthcare system, often over many years, and the empowering actions they had developed, enhanced their self-efficacy and confidence in managing both their current and potential future symptoms. Despite recognizing the significant challenges they faced, several women expressed pride in having endured such difficult symptoms and treatments. “It's like my battle scars, right? When you go to war, you come back knowing that you've gone through this and your life is different from there on. For me it's amazing to look back and say, oh gosh, I've gone through that, I've done that. It doesn't get easier, it actually just gets harder and harder. But it's just a reminder for me that I'll just need to keep fighting.” (40-year-old, Southeast Asian woman)
Women also described feeling better equipped to discuss their endometriosis symptoms and treatment options with intimate partners, family members, and healthcare providers, as well as to navigate an often unsympathetic and complex healthcare system.
Resilience also appeared to manifest through advocacy aimed at supporting others affected by endometriosis. Women described sharing their vulnerabilities, experiences, and practical wisdom about coping with and self-managing the condition. Several women described their efforts to offer reassurance and encouragement “to now be able to advocate, to speak up, to encourage people to not be afraid to speak up, to not be afraid to get a second opinion.” (27-year-old, South Asian woman) Raising awareness, particularly through social media, was commonly mentioned as a means by which women could help others realize they are not alone and avoid the struggles they had endured. They wanted to ensure that “even the family members or whoever is suffering from this, they can take some action, to deal with it in a proper way.” (32-year-old, South Asian woman) Several women described feeling a sense of responsibility for this advocacy work, which motivated them to lobby for change at the individual and the system level, even when not well received, as pointed out by one woman. If someone says something about the endo that's not correct, or they make it sound like it's not a big deal, I correct them and I correct them firmly. So that kind of makes me seem like a bee-with-an-itch. But now I don't really care because I feel like I should be advocating or doing my little bit because if I don't do it and I'm the one experiencing these symptoms, then who will? (39-year-old, South Asian woman)
Carrying forward empowering actions
The resilience developed through endometriosis-related experiences and empowering actions appeared to extend to other aspects of women’s lives, positively affecting their physical and mental health. Women commonly emphasized and shared photographs depicting healthy lifestyle choices and habits initially adopted to self-manage their endometriosis, which subsequently enhanced their overall well-being. These lifestyle modifications included dietary improvements, regular exercise, and curtailing substance use. One woman recounted that during the COVID-19 pandemic she “did drink a lot” and in reflecting that “alcohol - not a very good choice to de-stress yourself,” decided to reduce her alcohol consumption to reduce her endometriosis symptoms, ultimately leading her to “just stop drinking altogether.” Additionally, women described the applicability of strategies effective for bolstering endometriosis-related mental health challenges, such as therapy-based skill building, to other areas of their lives. Moreover, the prolonged and arduous journey of coping with and self-managing endometriosis symptoms and seeking medical care was often accompanied by women’s reflections on their evolving self-identity. This journey was exemplified in one woman’s account of how endometriosis compelled her to acknowledge her feelings of loss and modify aspects of her self-identity. The biggest part of this journey of living with endo is just like the loss of self, the loss of who I thought I would be at this point in my life and having to reconcile where I wish I was with where I actually am. . . Like who am I? What do I care about? How do I define myself now that [I am] not defined by my career, by the activities I'm participating in, by the goals that I had and hoped to achieve? That's been really confronting, and it has taken me years to really come to a place where I've accepted this is the reality of things. (36-year-old East Asian & White woman)
Cultivating gratitude and hope
The majority of women shared expressions and photographs depicting “symbols” of gratitude and hope without explicit instructions to do so. It appeared that the women had made concerted efforts over time to intentionally cultivate gratitude for the positive aspects of their lives and find and maintain hope for the future, whether related to their health, relationships with family and friends, the achievement of personal or career goals, or even simple day-to-day activities. Women commonly described creating reminders that inspired gratitude and hope, such as photographs, cherished memories, or mantras, especially for the challenging days they anticipated in the future. Several women generated photographs that depicted spending time with specific individuals who brought them joy or engaging with nature as strategies to find and sustain optimism and hope (see Figure 5, Photographs 7 and 8).
Building resilience.
Discussion
This novel photovoice study with South, East, and Southeast Asian women in Canada uncovered unique challenges and pathways to resilience. We found that during the pandemic, the context of women’s social support systems influenced women’s use of empowering actions to cope with and self-manage their endometriosis, which ultimately led them to build strength and resilience. We also found that the relationships between social support, empowering actions, and resilience were bidirectional, such that empowering actions were also used to bolster support systems, and resilience often increased women’s capacities to take empowering actions to manage symptoms of endometriosis.
The importance of social support
Our finding that social support played a pivotal role in the endometriosis-related experiences of Asian women is consistent with past research and recommendations published during the pandemic, 28 suggesting that people with endometriosis develop and maintain both proximal and distal social connections. 5 The influence of social support is noteworthy considering evidence that social support is associated with decreased pain-related stress, the reappraisal of pain-related stress, the promotion of healthy coping, and the reduction of neural and physiological stress systems associated with pain perception. 29 In our prior research on endometriosis-associated painful sex, we found that women developed self-management strategies over time through engagement with supportive and understanding connections. 30 Prior research during the COVID-19 pandemic identified a perceived decrease in social support as an independent risk factor for low resilience in people with endometriosis. 8 Notably, participants also mentioned how social restrictions imposed by the COVID-19 pandemic enabled them to prioritize their most valued, positive relationships, which often resulted in the loss of pre-existing, less important support networks. This re-evaluation may have been driven by lessened social pressure during the pandemic, and the adjustment to effective home-based endometriosis management strategies, as previously reported by Australian women with endometriosis during the pandemic. 31
Considering that all our participants were of Asian descent and living in Canada, it is important to consider the influence of cultural factors in shaping the helpfulness of social support on offer. Other research has suggested that Asian individuals may be more reluctant to explicitly ask for support from close others but are more likely to benefit from support that does not involve explicit disclosure of personal experiences and emotions of distress compared to their White counterparts. 32 Furthermore, others have postulated that East and South Asians may be less accepting of pain expressions than their White counterparts33,34 and often report personal distress in response to other’s distress. 35 This evidence may offer insight into our finding that women perceived stoicism and formality in their family networks as unsupportive, but simultaneously endorsed social support as an integral part of their well-being. It is possible that feeling worthy or deserving of support when there is cultural pressure to mitigate pain expression may have influenced how our participants sought and received support.
A minority of our participants indicated that their coping and self-management was primarily determined by their own actions rather than influenced by their social support. This raises questions about the interplay between social circumstance, personal self-efficacy, dependency, and other factors that differentially contribute to one’s ability to engage in coping and self-management strategies related to endometriosis. Our patient partners reflected on this finding as key to understanding how endometriosis is experienced differently among individuals. The nuanced role of social support highlights that while some individuals heavily rely on external support systems, others might prioritize their autonomy and personal coping mechanisms. Future work should delve deeper into the varying individual and social circumstances of people with endometriosis and how these impact their ability to cope, self-manage and build resilience.
Coping and self-management through empowering actions
The empowering actions developed and employed by women in this study varied and encompassed activities that promoted both short and long-term well-being. The consequences of the COVID-19-related public health restrictions included positive aspects, such as the ability to work from home and reduced pressure to engage socially, which were conducive to self-managing symptoms of endometriosis while also maintaining responsibilities to work and others. This finding is consistent with research reporting positive impacts of the COVID-19 pandemic for people with endometriosis, including the convenience of telehealth appointments, and improved symptom management due to decreased day-to-day travel, working from home, and the opportunity for healthy lifestyle choices.36,37
One of the most striking forms of empowering actions that emerged from our data was participants’ emphasis on the importance of acquiring knowledge regarding endometriosis to make informed decisions on coping and self-management strategies through independent research. It remains unclear whether this pursuit of knowledge stemmed from necessity or interest. Nevertheless, acquiring and integrating knowledge about endometriosis into their care regimen appeared to grant women a sense of autonomy in the face of a disease that frequently undermines it. This self-education may have provided participants with a greater sense of control over their conditions, highlighting the critical role of knowledge in fostering self-efficacy and empowerment in managing endometriosis and chronic pain, as endorsed elsewhere.5,28,31,38
Accessing healthcare was positioned by the women in our study as an empowering action, involving the significant challenge of overcoming the fear of poor healthcare experiences, particularly when they had felt dismissed and disregarded in past interactions. A recent study reported that East and Southeast Asians in Canada were eight times more likely than their White counterparts to have a previous diagnosis of moderate-to-severe endometriosis before being referred to a tertiary gynecological care center. 39 To contextualize this finding within our findings, several plausible explanations emerge. The women in our study exhibited creativity, willpower, resourcefulness, and bravery in their efforts to cope with and self-manage their symptoms. These strengths-based approaches to self-management could potentially lead to less health-seeking behavior, which may explain the higher likelihood of having a more advanced stage of the disease before referral. Additionally, many of our participants recounted negative healthcare encounters in the past, which could result in fewer referrals or reduced health-seeking behavior, further explaining this finding. While the participants in this study did not explicitly mention race, sex, and the context of the COVID-19 pandemic as a significant barrier to healthcare access, it is possible that implicit medical racism and sexism from providers may have contributed to these past negative healthcare encounters. 9 Notably, some women emphasized the importance of having a care provider who was knowledgeable, female, and/or racialized. This is consistent with other research demonstrating that patients who perceive personal similarity to their physicians experience greater trust and satisfaction. 40 The reasons why moderate-to-severe endometriosis seems to be more common in individuals of Asian descent 39 likely involve a complex interplay between biological, social, and psychological factors that warrant further investigation.
Building resilience
The narratives and photographs we presented illustrated strength and resilience-building among women with endometriosis during the pandemic. Though Wald et al. 41 defined resilience as the ability to maintain or regain mental health despite experiencing adversity, Goubert and Trompetter 42 offered an alternative in the context of chronic pain; “the ability to restore and sustain living a fulfilling life in the presence of pain” (p. 1301). Our findings that women in this study displayed resilience by advocating for themselves may reflect learning to navigate interactions with healthcare providers and the healthcare system in a manner that reduced negative interactions and better met their needs. This may also have resulted from having more time to understand what promotes or impedes their endometriosis management and utilizing trial and error techniques to optimize this. Along these lines, resilience has been reported to be higher in people with more years of evolution of endometriosis. 43 Our research also suggests that endometriosis-related learning can contribute to positive identity formation, a finding consistent with other studies. Sharpe et al. 44 described how women living with chronic pain moved through phases including “redefinition of the self” and “moving forward” after diagnosis; characterized by coming to terms with their condition, constructing a new sense of self, and re-establishment of healthy relationships. Other research suggests that resilience among people with chronic pain may be fostered by the incorporation of the pain condition into one’s self-narrative, adaptive pain beliefs, and positive affect.38,45
The relationship between social support, empowering actions, and resilience
We propose a linear, bidirectional, and non-causal relationship among the core themes of social support, empowering actions, and strength and resilience-building (Figure 2). The linear aspect of the relationship between the core themes highlights the primary mechanism of resilience building among participants in the context of endometriosis: the context of social support systems drove the use of empowering actions to cope and manage symptoms of endometriosis, which promoted resilience building. The bidirectional nature of this relationship recognizes the role that empowering actions had on one’s social context, and how resilience fed back into participants’ ability to take empowering actions to manage symptoms of endometriosis. Research among Asian immigrants with chronic pain also suggests that resilience enhances self-management.40,43 Further, the associations between the core themes suggest that the proposed relationship is a simplified mechanism of how our participants appeared to build resiliency. For example, this relationship does not account for how resilience can be achieved without social support, or how endometriosis symptom presence and severity influence this mechanism, or how other, non-endometriosis related factors, such as trauma, mental illness, or the presence of other health conditions, likely influence this mechanism. It is also possible that this proposed mechanism of resiliency building is unique to women’s experiences during the COVID-19 pandemic.
Strengths/limitations
Strengths of this study include the use of photovoice methodology, which we found particularly helpful for gaining insight into the experiences of women with endometriosis, an otherwise difficult topic to discuss. The use of multiple data collection modalities –photographs, written photograph captions, and interviews – illustrated aspects of their experiences that were important to our participants that we might have otherwise missed – namely empowering actions and resilience-building. While including women who identified as East, South, or Southeast Asian provided some ethnic diversity, we acknowledge the significant diversity within and among different Asian ethnicities. We did not explore differences between the ethnicities represented in this research, as this was not the study’s aim. Our participants were mostly heterosexual, cisgender, educated, urban living, employed, and partnered women. Furthermore, all participants had a diagnosis of endometriosis, spoke English, and had access to technology. Therefore, our results do not represent the experiences of those without a diagnosis, who do not speak English, or those who lack access to technology. A lack of English proficiency and technology access are well-established barriers to healthcare in Canada. Additionally, having a pre-existing diagnosis of endometriosis indicates health-seeking behavior, which does not reflect the experiences of those living with endometriosis symptoms who are unable to access healthcare. The trajectory to resiliency for Asian women with endometriosis may look fundamentally different in these populations. Further, we did not collect participant information on the type of endometriosis diagnosed with, type of care received, age of symptom onset, and age of endometriosis diagnosis. It is likely that these factors influenced participants’ past and current quality of life, shaping how they communicated their experiences in the context of this study. Future research should explore how and if resilience operates in different endometriosis populations, such as in those who do not speak English, first-generation immigrants, those with limited access to care, and those with different presentations of endometriosis.40,43
Takeaways
There are three important takeaways from this work:
Supportive relationships can benefit people with endometriosis by offering emotional support (e.g. empathy, validation, patience) and logistical support (e.g. providing goods, completing tasks, supporting chores), and by challenging harmful assumptions about those with endometriosis.
Healthcare providers can support people with endometriosis through empathetic listening, validation of experiences, increasing knowledge around endometriosis, and understanding the vulnerability inherent in seeking care but also how seeking care can be empowering.
Many women found strength in culturally-rooted practices, having close and communal relationships, educating themselves and others, contributing to research, and participating in advocacy work. However, building resilience may not be unidirectional and may look different in different populations. Further research should explore the creation of strength-based approaches to the management of endometriosis across different populations.
Conclusion
The women in this study demonstrated a resilience approach to living with endometriosis during the COVID-19 pandemic. By drawing on their support systems and coping and management strategies, they built resilience mechanisms that buffered against disablement and promoted sustainability and recovery. Their capacity to build and champion a fulfilling and meaningful life despite adversity cannot be understated.
Supplemental Material
sj-docx-1-phj-10.1177_22799036251407192 – Supplemental material for Endometriosis and expressions of self-management and resilience among Asian women living in Canada during the COVID-19 pandemic: A photovoice study
Supplemental material, sj-docx-1-phj-10.1177_22799036251407192 for Endometriosis and expressions of self-management and resilience among Asian women living in Canada during the COVID-19 pandemic: A photovoice study by Nisha Marshall, A. Fuchsia Howard, Kerry Marshall, Hannah E. Rojas, Natasha L. Orr, Heather Noga, Jessica Sutherland, Roop Bassra, Anna Leonova, Erin Fernie, Vinita Puri and Paul J. Yong in Journal of Public Health Research
Footnotes
Acknowledgements
We would like to acknowledge the Endometriosis Patient Research Advisory Board at the University of British Columbia for their unwavering support.
ORCID iDs
Ethical considerations
Ethics approval for the study was obtained from the University of British Columbia Children and Women’s Research Ethics Board (H22-02390).
Consent to participate
Written consent to participate was provided by all participants.
Consent for publication
Consent for publication was provided by all participants.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the Canadian Institutes for Health Research Wider Impact of Covid-19 grant (202111WHI). A.F.H. was further supported by a Scholar Salary Award and P.J.Y. by a Health Professional Investigator Salary Award from the Michael Smith Health Research BC. P.J.Y. is supported by a Tier 2 Canada Research Chair in Endometriosis and Pelvic Pain.
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data availability statement
The data sets generated during and/or analyzed during the current study are not publicly available as participants did not consent to making their data publicly available but are available from the corresponding author on reasonable request.
Supplemental material
Supplemental material for this article is available online.
References
Supplementary Material
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