Abstract
Background:
Endometriosis affects approximately 190 million people globally and 2 million in Canada. Experiences of endometriosis can profoundly impact all aspects of life, including physical, mental, and financial well-being. The Coronavirus Disease 2019 (COVID-19) pandemic impacted endometriosis care, mental health outcomes, and increased overt racism towards Asian people internationally.
Objectives:
In this study, we aimed to describe the impacts of the COVID-19 pandemic on the mental health of Asian women living with endometriosis.
Design:
Qualitative, photovoice.
Methods:
We used photovoice, an arts-based methodology, and thematic analyses of 22 interviews with East, South, and Southeast Asian cisgender women living in Canada regarding their experiences with endometriosis during the COVID-19 pandemic.
Results:
Participant photographs and narratives conveyed how the COVID-19 pandemic caused disruptions in their lives, which influenced the ways they navigated, managed, and coped with endometriosis symptoms and, ultimately, their mental health. Some disruptions were exacerbated during the COVID-19 pandemic and impacted mental health, including worsening of and inability to manage symptoms as usual, deepening isolation and disconnection from self and society, and turbulent and transformational experiences in interpersonal relationships. Other disruptions were unrelated to the COVID-19 pandemic, including endometriosis invisibility and invalidation, the burden of necessary overplanning, and the complexities of grappling with uncertain fertility. Participants commonly described experiencing feelings of guilt, uncertainty, lack of control, fear, hopelessness, grief, anxiety, and depression.
Conclusion:
The COVID-19 pandemic exacerbated disruptions affecting the mental health of participants, disruptions unrelated to COVID-19 remained in participants’ lives. Considering the latter was particularly impactful on the mental health of participants as these disruptions existed prior to – and would continue beyond – the COVID-19 pandemic.
Plain language summary
Endometriosis is a chronic condition that affects millions of people around the world. Endometriosis can impact all aspects of a person’s life, including their mental health. During the COVID-19 pandemic there was an increase in anti-Asian racism, meaning that Asian people with endometriosis may have had more mental health challenges. In this study, we aimed to learn more about how the COVID-19 pandemic impacted the mental health of Asian people living with endometriosis. We used a research method called photovoice, where 22 East, South, and Southeast Asian cisgender women with endometriosis living in British Columbia, Canada, took pictures of their experiences with endometriosis during the COVID-19 pandemic. Our research team then had interviews lasting about one hour, where we asked people questions about the pictures they submitted. From the interviews, we learned that the COVID-19 pandemic influenced the way they coped with their symptoms of endometriosis and their mental health. Although the COVID-19 pandemic influenced the way people managed their lives, many of the mental health challenges participants faced because of endometriosis existed before the pandemic and would continue to exist after the pandemic.
Introduction
Endometriosis affects approximately 190 million cisgender reproductive-aged women globally or 2 million in Canada, 1 and an unknown amount of transgender, intersex, and gender diverse people, 2 and – very rarely (16 cases documented) – cisgender men. 3 Cisgender is a term used to describe when the sex assigned at birth is the same as the gender identity one currently identifies with. 4 Endometriosis is defined as ectopic growth of epithelial or stromal lesions resembling uterine endometrium outside the uterus, typically elsewhere in the pelvis. 5 It is a common cause of painful periods, painful sexual activity, infertility, and chronic pelvic pain. 6 Experiences of endometriosis can profoundly impact all aspects of life, including physical and financial well-being, as well as mental health.7,8 We define mental health as a state of psychological, emotional, and social well-being that allows people to cope with life stressors.9,10
Depression and anxiety are commonly associated with endometriosis 11 and are reported at higher levels in those with endometriosis when compared with those who do not have endometriosis. 7 A recent review estimated that up to one-third of individuals with endometriosis concurrently experience anxiety or depression, with some studies reporting rates as high as 48%. 7 These mental health challenges can be caused and exacerbated by endometriosis-associated chronic pain, 7 the dismissal and delegitimization of symptoms by friends, family, and health care providers, and difficulty in symptom management due to challenges accessing treatment. 12 Furthermore, due to complications identifying and classifying endometriosis, 13 the average time to diagnosis is 7–9 years globally, 14 approximately 5 years in Canada, 15 and some reports of formal diagnosis taking up to 20 years. 12 These experiences can lead to increased feelings of isolation, hopelessness, and suicidal ideation for those experiencing endometriosis. 12 Dismissal of symptoms and challenges in care access have been attributed to endometriosis being labelled as a “women’s disease” or a gendered condition where underdiagnosis, misrecognition of symptoms, and delegitimization remain prevalent. 13
It is well documented that the Coronavirus Disease 2019 (COVID-19) pandemic impacted the mental health of many global citizens, regardless of age,16,17 gender, 18 or location. 16 Similarly, several studies documented worsening physical and mental health symptoms of those experiencing endometriosis during the pandemic, including painful menstruation, painful sexual intercourse, pelvic pain, anxiety, depression, and fatigue.19–24 In a 2021 survey of 1089 women with endometriosis in the United Kingdom, 55.2% reported worsened pain and 69.2% reported worsened mental health symptoms during the pandemic. 23 Changes in physical and mental health symptoms are thought to stem from pandemic-related measures, including social distancing, “lockdowns,” and fear of the virus, along with disruption in health care services, including postponed or cancelled surgeries, increased surgical wait times, and decreased access to health care.20,21,24,25
Some data suggest that White and Asian women may experience similar endometriosis prevalence; however, as much of the research is dominated by White participants, it is challenging to interpret who and how racialized people are affected. 5 Through racialization, people are categorized based on physical appearance, leading to inequitable treatment. 26 One study found that patients of East or Southeast Asian descent had more severe endometriosis disease yet reported less pain and mental health symptoms. 27 These findings may be related to common diagnostic and measurement tools being Eurocentric and eliciting a cultural response bias, ultimately failing to capture symptoms experienced by those who are not White. 5 Notedly, studies that focused on the impacts of COVID-19 on endometriosis consisted mainly of White cisgender participants,20,23,24 with limited evidence reflecting the experiences of those who are racialized. With this, racialized women may face obstacles in accessing health care and coping with endometriosis due to historical medical (mis)beliefs that endometriosis primarily afflicts White women. 5
Alongside the COVID-19 pandemic came a surge in overt anti-Asian racism and discrimination in Canada and the United States, contributing to worsening mental health among Asian individuals. 28 Some Asian Canadians felt unsafe due to discrimination and violence, which contributed to feelings of anxiety, depression, fear, and panic, 29 with some calling the racially motivated hate crimes a “second epidemic.” 30 Although surges of discrimination and violence were exacerbated by political leaders spreading anti-Asian rhetoric,29,30 some authors argue it may highlight a deeper issue within postcolonial Canadian interpretations of multiculturalism, which may exacerbate cultural inequities. 28 Although many faced declining mental health due to the COVID-19 pandemic, the gap in mental health between White Americans and Asian Americans highlighted that Asian people experienced greater incidences of depression and anxiety. 31
Given the impact of the COVID-19 pandemic on mental health, the compounding experiences of those with endometriosis, and the lack of endometriosis literature inclusive of racialized participants, there is a notable knowledge gap concerning how the COVID-19 pandemic impacted the mental health of East, South, and Southeast Asian people experiencing endometriosis. As such, the purpose of our research was to describe the impact of the COVID-19 pandemic on the mental health of East, South, and Southeast Asian people with endometriosis living in Canada.
Design and methods
Photovoice research methodology
For this research, we used photovoice – an arts-based methodology – where participants generated photographs to depict their experiences of endometriosis during the COVID-19 pandemic. These photographs were shared and discussed during one-on-one qualitative interviews with a research team member. Photovoice is appropriate when participants experience a stigma-related or hidden condition and may struggle to disclose or convey their experiences in conventional interviews that exclusively rely on spoken words. 32 Photovoice provides novel insights when exploring topics that are intersectional in nature, as the approach can provide new opportunities for participants to explore and unpack their nuanced identities and experiences, which contributes to a growing body of knowledge related to intersectional experiences. 33 Our research team consisted of cisgender people with lived, research, and/or clinical experience with endometriosis including clinicians, researchers, trainees, and patient partners. Patient partners were not study participants, but rather, individuals with lived experience of endometriosis who collaborated as research team members by contributing to study conceptualization, grant writing, development of recruitment strategy and data collection tools, final data analysis, and knowledge translation strategies. 34
Participants and recruitment
Study participants were 19 years or older, resided in British Columbia, Canada, were comfortable communicating in English, had previously received a confirmed or suspected diagnosis of endometriosis from a health care provider, and self-identified as East, South, and/or Southeast Asian. These definitions were based on Asia Society,35–37 where East Asia includes China, Hong Kong, Japan, Macau, Mongolia, North Korea, South Korea, and Taiwan; South Asia includes Afghanistan, Bangladesh, Bhutan, India, Iran, Maldives, Nepal, Pakistan, and Sri Lanka; and Southeast Asia includes Brunei, Cambodia, East Timor, Indonesia, Laos, Malaysia, Myanmar, Philippines, Singapore, Thailand, and Vietnam. Individuals were excluded from participating if they were unable to provide informed consent or did not have access to the internet.
We recruited participants in the following ways: (1) from those who previously consented to be contacted for research purposes by the Endometriosis Pelvic Pain Interdisciplinary Cohort Data Registry (clinicaltrials.gov #NCT02911090), (2) through distributing paper flyers in an endometriosis and pelvic pain clinic and promoting the study electronically through their clinic newsletter, (3) through social media channels, and (4) listing the study on the online platform REACH BC that connects research participants with research investigators. These recruitment approaches combined purposive and convenience sampling and aimed to ensure a diverse and representative participant sample. Interested participants filled in an online Qualtrics survey, after which a research team member (N. M.) contacted them to discuss the research and determine whether eligibility criteria were met. After consenting to the study, which included explicit consent to share participant photographs, participants were sent two separate links – one to fill in a demographic form and the other to submit their photographs and captions – and a document with a list of mental health resources if needed following participation. See Table 1 for participant characteristics. Although our inclusion criteria were intentionally inclusive of multiple gender identities and endometriosis affects multiple genders, the participants of this study all identified as cisgender women. Prior to recruitment, ethics was granted by the University of British Columbia Children and Women’s Research Ethics Board (H22-02390). Informed written and verbal consent was received prior to interviews. All participants provided consent for their photographs and captions to be used in publications.
Participant characteristics.
The two participants who selected other indicated that they were self-employed (n = 1) and on medical leave from their full-time position (n = 1).
Number of participants that endorsed each option. Note that multiple options could be selected.
Data collection
Semi-structured interviews were completed by three team members (K. M., A. F. H., and N. M.) virtually (via Zoom Video Communications, Inc) between March and July 2023. Analysis and article writing were undertaken between June–August 2023 and March–November 2024. Prior to the interview, participants were asked to submit between 8 and 10 photographs with 1–2 sentence summaries for each photograph that documented their experiences with endometriosis during the COVID-19 pandemic, which then guided the semi-structured interviews. During the interviews, the interviewer displayed (via screen share) the photographs the participant had submitted, asked them to describe their photographs, and posed a series of questions. The interview guide was modified as the study progressed based on bi-weekly analysis meetings (between A. F. H., K. M., N. M) where we discussed thematic insights and preliminary analysis. See the Supplemental File for the initial interview guide. We also asked participants follow-up and probing questions, typical of a more conversational interview approach. Interviews averaged 67 min, ranging from 42 to 92 min. Interviews were audio and video recorded, transcribed verbatim via an automated transcription service (Temi), and de-identified. Participants were given a $100 gift card to their preferred Canadian online retailer as a study honorarium.
Data analysis
We analysed the data using a flexible thematic analysis approach, 38 assisted by data management software NVivoTM version 12 and online diagramming and visual collaboration software MiroTM. Our analysis was also informed by a critical intersectional theoretical lens, 39 which we used as a sensitizing tool to enable the examination of the connections and co-constituted relationships between multiple aspects of identity and forms of power. When used in analysis, an intersectional lens provides opportunities to deeply explore the multiple and multidimensional aspects of how human experiences are shaped by converging and combining social locations, structural influences, power, and oppression. 39 This analysis involved explicitly paying attention to aspects of identity and forms of power evident in the data and examining their inter-relationships and influence on mental health broadly.
Once data collection began, members of the team (K. M., A. F. H., and N. M.) met bi-weekly to familiarize ourselves with the data, discuss data analysis, and note initial interpretations and trends and, as analysis progressed, the grouping and regrouping of insights and codes into themes and the refining of themes. We inductively developed an initial flexible coding framework and codebook to capture key ideas, concepts, and patterns noted from the interviews. At this point, we also drew upon intersectionality theory and deductively included related codes (e.g.. gender, sex and sexuality, age, ableism, culture/race/ethnicity). The framework was continually revised based on team input and subsequent interviews and used by members of the research team (K. M., N. M., and H. R.) to code all interview transcripts. As analysis progressed, codes were further developed to organize data segments by grouping and regrouping codes based on similarities, differences, and patterns in the data. We reviewed the data allocated to the various codes to inductively derive key themes. The data in each theme were reviewed multiple times to further develop the analyses, check for coherence within themes and distinctiveness between themes, and ensure themes were supported by illustrative quotations, photographs, and captions. The findings and full article were reviewed and refined based on input from members of the patient advisory board. Instead of being guided by the concept of data saturation, we (K. M., A. F. H., N. M., and H. N.) used our interpretative judgement, as per Braun and Clarke, 40 and the input of patient advisory board members to determine that our data collection and analysis had produced a robust and insightful description of the impact of the COVID-19 pandemic on the mental health of study participants with endometriosis. Please note, results related to health care access and resilience will be published elsewhere.
Rigour
We revised study materials, including recruitment materials and interview guides with feedback from patient partners to bolster credibility and ensure we gathered meaningful data. The study audit trail was generated through team memos, meeting minutes, a coding frame and codebook, NVivo coding and data extraction runs, analytic notes and diagrams, and preliminary drafts of findings, which collectively documented our analysis process and decisions. Our data coding was an inductive and iterative process 41 (versus one focused on inter-coder reliability) completed by four team members who regularly met with the research team to discuss the application of the coding frame, suggestions for revisions to the frame, and new insights gleaned. Instead of member checking, patient partners provided input into the consistency and resonance of the findings with their own experiences, which informed the refining of the findings, enhancing representative credibility and interpretive authority. Determination of the robustness and final organizing structure of the themes was based on research team dialogue, inclusive of researchers, clinicians, and patient partners. Although some themes and subthemes were less complex than others, our team agreed that they were distinct enough to merit description as separate themes. Further, ongoing dialogue enhanced the team’s reflexivity. The reporting of this study conforms to the COREQ guidelines 42 (see Supplemental Materials).
Results
Participants’ photographs and narratives conveyed how the COVID-19 pandemic caused disruptions in their lives, which influenced the ways they navigated, managed, and coped with their endometriosis symptoms and their mental health. Although data collection focused on experiences during the pandemic, we found that participants’ experiences of endometriosis before the pandemic was also laden with disruptions and remained integral to their stories. Thus, we identified disruptions that were (1) exacerbated during the COVID-19 pandemic that impacted mental health; including worsening of and inability to manage symptoms as usual, deepening isolation and disconnection from self and society, and turbulent and transformational experiences in interpersonal relationships; and (2) unrelated to the COVID-19 pandemic that impacted mental health, including endometriosis invisibility and invalidation, the burden of necessary overplanning, and the complexities of grappling with uncertain fertility.
The photographs and narrations shared by participants suggest that, collectively, these disruptions strongly impacted their mental health, with feelings of uncertainties, lack of control, fear, hopelessness, grief, guilt, anxiety, and depression commonly described and woven throughout the findings. Moreover, while we present these disruptions as unilaterally impacting mental health, there also appeared to be a reciprocal relationship. That is, disruptions and mental health challenges were interconnected such that poor mental health also interfered with the participant’s ability to cope with and manage endometriosis symptoms and sequelae. For example, social isolation not only appeared to be both a cause and an effect where it preceded and contributed to mental health challenges but also resulted in poor mental health and social withdrawal. See Figure 1 for a visual representation of themes.
Visual representation of themes.
Among the findings, through our intersectional analysis, we highlighted aspects related to gender, sexuality, ethnicity, culture, religion, geography, and neurodivergence. These findings will be discussed throughout the Results section.
Disruptions exacerbated by the COVID-19 pandemic that impacted mental health
Worsening of endometriosis symptoms and inability to manage as usual
Many participants described a worsening of their symptoms, indicating that, although they found ways to manage their life with endometriosis, they could no longer expect their endometriosis symptoms to be the same as before the COVID-19 pandemic.
During the pandemic, I started to experience pelvic pain that was a lot more intense than what I had experienced before. Previously, had been mostly tied to my menstrual cycle, and then it became quite sporadic, and there were periods of many weeks where I would be in excruciating pain. . . it [the pain] made it difficult to do basic things, even just work and exercise, seeing friends and things like that, which wasn’t great. And really there wasn’t much that I could do to feel better beyond just trying to sleep it off. (33-year-old East Asian, Latina, and Middle Eastern woman)
Participants described a disruption to their usual pattern of endometriosis symptoms, noting ambiguity about their expectations for their menstrual cycle, the level of pain they might experience, and the extent of their incapacitation (Figure 2). This uncertainty, coupled with the burden of symptoms, seemed to foment worry, uncertainty, fear, depression, and anxiety. Often, their experiences of pain were compounded by their mental stress and a general sense of unknowing related to the COVID-19 pandemic engendering additional anxiety and depression.
During the pandemic, my symptoms worsened.
In addition to the COVID-19 pandemic exacerbating endometriosis symptoms, participants commonly described challenges using their usual symptom management strategies. Due to public health measures put in place to mitigate COVID-19 infection, including social distancing and the closure of non-essential businesses, participants indicated a reduction in access to people, environments, services, and resources outside their homes that they typically relied upon to manage their symptoms (Figure 3). These changes interfered with participants’ ability to enact their usual coping strategies, resulting in challenges, discomfort, and frustrations.
So many soaks.
Deepening isolation and disconnection from self and society
Participants commonly highlighted their feelings of social isolation and loneliness related to endometriosis before the COVID-19 pandemic. These feelings were most often attributed to symptoms – primarily pain – that prevented participants from engaging socially and feeling understood within their social and professional relationships. With fewer social interactions, smaller social circles, and reduced in-person interactions – due to public health measures that restricted social gatherings – participants described the exacerbation of their social isolation and loneliness, leading them to feel even further removed and withdrawn from society. These experiences left some feeling hopeless and depressed, as though they wanted to disappear and further withdraw socially. Reciprocally, hopelessness and depression were also compounded by feeling isolated and lonely, where participants described having few people who could relate to what they were enduring, causing them to withdraw further. Multiple participants shared photographs to convey isolation, depression, and hopelessness (Figures 4 and 5).
A light dusting of snow across an intersection at night, tyre marks, and grass barely visible.
I feel alone when I am in pain (40-year-old East Asian woman).
From an intersectional lens, social locations and aspects of the participant’s identity also compounded feelings of isolation alongside experiences of endometriosis. One participant discussed their gender presentation, mixed ethnic identity, and neurodivergence as contributing to feelings of isolation within the endometriosis community. Although the participant had attended virtual endometriosis support groups, she did not feel as though she “fit” because she did not see aspects of herself represented among the other support group participants, leaving her feeling even more isolated.
Participants also reported feeling physically and socially isolated and lonely due to geographic location and living in more remote locations, though this isolation was complicated. For example, one participant expressed gratitude for living more remotely because she preferred to be alone when she was experiencing pain from endometriosis. However, she also contended that living in a remote area contributed to her experiences of racism, and as an immigrant to Canada without her family, she faced complex feelings of loneliness.
Limitations on socializing appeared to be even more pronounced in the context of significant endometriosis symptoms that rendered many activities out of reach. Participants experienced grief and loss along with isolation, where they were forced to withdraw from daily life and not partake in the same “normal” societal activities as someone else in the same life stage. Fear and anxiety of contracting COVID-19 forced participants to make deliberate decisions about social interactions with their broader support networks, often limiting face-to-face contact and social support, with consequences to their mental health.
For me, not getting COVID was such a prominent part of my experience, avoiding it as much as possible. But, I can’t control what other people are doing. So, I then, therefore, had to isolate myself more to keep myself safe. But then, that just further increases the isolation that I’m already experiencing as a result of going through endo. It’s just so much more complicated when you have a chronic condition. (36-year-old East Asian and White woman)
The perceived loss of regular social activities – engagement in which had previously constituted part of their self-identity – disrupted some participants’ sense of self and their hopes and dreams for their futures. Several participants described feeling as though their lives were on hold and the world and others were passing them by while they attempted to obtain relief for their incapacitating symptoms and waited for medical treatment (Figure 6).
This photograph symbolizes the isolation, loneliness, and sense of being stuck in “limbo” that has arisen for me throughout the pandemic while trying to manage my endometriosis and other chronic illnesses.
Turbulent and transformational experiences in interpersonal relationships
Participants explained that endometriosis affected multiple aspects of their close friend, family, and romantic relationships. For some, the COVID-19 pandemic exacerbated challenges to engaging in close friendships due to their limited energy to maintain less-fulfilling relationships, difficulty staying connected to more distal supports, and the limited capacity of others to listen and empathize.
I lost some friends and I gained some, you know. I think at the end of the day life goes on. Some people couldn’t handle my pain cause it’s a lot of complaining and stuff. . . So, you know, some people left my life because they didn’t want to be there. (40-year-old South Asian woman)
From an intersectional perspective, cultural and gendered expectations put additional pressure on familial relationships, causing tensions when endometriosis symptoms prevented participants from meeting expectations. Participants discussed differing expectations for women and girls to help and maintain the household, which were not the same as those for men. For some, these experiences coincided with others’ misunderstandings of endometriosis experiences and assumptions of laziness versus endometriosis-related fatigue when participants were unable to complete tasks.
But [my parents] don’t understand in that moment [that] you get so fatigued, you get so tired you get so you just procrastinate everything because you just know you can’t pull yourself to do it now because you just have absolutely no motivation or even physical strength or energy to do it. (19-year-old South Asian woman)
Other participants felt less external pressure from family but had more internal expectations of themselves, leading to feelings of guilt for not being able to help and provide for their family as they wanted to.
I feel guilty sometimes, feeling like I want to do more for the family and for the household. My parents I feel like do so much and I want to help them out too, but it’s, it’s tricky sometimes [due to my symptoms] to find that balance. (23-year-old South Asian and White woman)
The participants’ photographs and narratives highlighted increased reliance on participants’ closest friends, family, and most commonly, partners during the COVID-19 pandemic, which facilitated a deeper connection.
Based on the COVID-related guidelines issued in the BC health region, we were asked to stay at home and there was not much social networking. This certainly would have put extra pressure on my spouse to offer extra love, care, attention to make me feel better. (32-year-old South Asian woman)
Several participants described their partner becoming more involved in their care. They took on caregiving roles, assisted in planning activities around symptoms, and provided emotional and tangible support, all of which participants found supportive, enhancing and deepening their relationship.
My husband, he would keep track on my schedule, my menstrual cycle schedule. If he knows that I would be having my period soon – for example the following Saturday, Sunday – then he wouldn’t plan any outing activities, no hiking, no walking, no outdoor activities. (40-year-old East Asian woman)
Despite enhanced intimate relationships depicted by some, other participants conveyed relationship turbulence related to their endometriosis that was exacerbated by the COVID-19 pandemic. Some participants not currently in intimate and committed relationships indicated that they were worried and anxious about how they would approach future relationships, including disclosure of their endometriosis and potential consequences like infertility or the need for urgent medical care. This forced some to have conversations about a very private aspect of their health and what they needed from a partner before the relationship got serious.
I told [my boyfriend] when we started dating, so I have this, I would get like this. So in case of emergency, this is the condition. (34-year-old South Asian woman)
Sexual intimacy was further discussed by participants as being a challenge due to fear of penetrative sex, the unpredictability of symptoms, and pain with penetrative sex, which fundamentally impacted their relationship with their partners. Although challenges with sex and intimate relationships were not attributed solely to the pandemic, lockdown measures where people were largely confined to their homes affected couples in unique ways. For example, worsening of symptoms often exacerbated painful insertive sex and – when coupled with the frustrations of co-isolating and being unable to draw upon external supports – created strain on intimate relationships.
There were a lot of times when I didn’t want to have sex and then you’re stuck in this house together and you’re both really frustrated and you’re slamming cupboards and it’s very palpable and you just, you can’t escape one another. But, you also are not close to one another. (34-year-old Southeast Asian woman)
One participant discussed that due to the pain associated with penetrative sex and the negative impact it was having on their relationship, they explored non-traditional relationship dynamics and became polyamorous. Due to lockdowns during the pandemic, the inability to see other partners that filled different needs in their relationship exacerbated tensions that they had intentionally worked to overcome (Figures 7 and 8).
As having the discharges all the time – no sexy nights in honeymoon too (31-year-old East Asian woman).
*Heavy bleeding and pain ruined so much in my life.
Feeling unable to fulfil intimate and sexual relationship expectations was depicted as contributing to emotions of grief, loss, and not being understood. Participants also described feeling guilty for the impact that endometriosis had on their mental health, which, in turn, was perceived as impacting their intimate relationships.
I’m tired of explaining something again and again over again. The same thing. But still, you don’t get it. And I feel bad too because it’s just like, this is my problem, but then he [my husband] has to deal with my unhappy face. When he first met me, I always smiled. I never take anything seriously. He said he missed the old me, I won’t blame him. Sometimes, I’m not happy with myself too, but I couldn’t do anything to take this version of me out of my way. . . (42-year-old, South Asian woman)
Disruptions unrelated to the COVID-19 pandemic that impacted mental health
Endometriosis invisibility and invalidation
Participants described multiple experiences wherein their endometriosis symptoms were downplayed or disregarded by friends, family, and health care providers, leaving many feeling invisible, misunderstood, judged, and depressed. Commonly, participants noted that their social isolation and feelings of being alone in coping with their endometriosis pre-dated the COVID-19 pandemic and were somewhat shaped by the taboo of discussing “women’s issues.” Several participants noted personal, family, and cultural valuing of stoicism, where women’s health and experiences related to menstruation or gynaecological health were not recognized as valid.
A lot of health issues in general, around women are not fully understood [in my culture]. So then when you have families who barely understand women’s issues, then hearing that I have this condition, they ask all these questions and, although it’s nice to tell people what’s wrong with me, at the same time they’ll still just say, she’s still lazy. Like even if you have this condition, she’s still lazy. (19-year-old South Asian woman)
Similarly, for others, discussing menstruation, pain, and “women’s issues” was not acceptable or commonly done within their family, nor did this align with cultural expectations and norms. Rather, “Asian people usually just like suffer in silence, sweep it under the rug. We just pretend it’s not there.” Of note, one participant discussed the deeply lasting impacts of colonization when offering an explanation as to why endometriosis and women’s reproductive health remained taboo: In my culture, originally, we had ideas that when a woman would be on her period, she would rest and she wouldn’t do anything at home. That idea after like colonization and extremism in India in general, turned into women shouldn’t be on their periods and women on their periods shouldn’t do anything because they’re dirty. (19-year-old south Asian woman)
Religious and cultural expectations created tensions among some participants. They balanced their personal experiences of endometriosis, and the scientific and empirical evidence related to their condition with family values and cultural and religious beliefs that shunned open discussions about women’s health. Nevertheless, certain participants described challenging these norms of avoiding discussions, choosing instead to advocate for increased awareness of endometriosis, particularly in their cultural communities.
Since there’s already the stigma of not talking about your health issues, especially if it’s something to do with reproductive health, I think that’s more prevalent in East Asian cultures, if not all Asian cultures. Like, people don’t really talk about even their periods, they just say, I have a stomachache. . . People think, “oh, that person’s ill.” They might think it’s somehow contagious. . . at least that’s what the older generations think. You don’t want to be seen as weak or contagious or diseased. But I think there’s been movement for East Asian women and other genders to kind of push that stigma. (27-year-old East Asian woman)
Burden of necessary overplanning
Related to coping with symptoms of endometriosis, participants described various strategies they employed to manage their lives more effectively. These strategies often involved meticulous planning and micromanaging daily activities to mitigate the impact of their symptoms on regular responsibilities. Participants detailed how this planning intersected with expectations related to employment, parenting, relationships, and household maintenance, necessitating additional measures to either function effectively or cope with their symptoms in a productive manner.
I try to exert control on things by over-planning. Because again, like a lot of my symptoms in my body feel uncontrollable. If I can plan my week, and my timetable, and my life to a T, maybe it gives me some semblance of like, control over things that feel a little bit obviously uncontrollable. (34-year-old Southeast Asian woman)
For some, this meant choosing careers that allowed for flexible hours or the ability to adjust shifts based on anticipated symptom flare-ups. Those with cyclical symptoms described meticulously tracking their symptom patterns and scheduling activities such as travel, vacation, social activities, and date nights well in advance and during periods when they expected to be symptom-free (Figure 9).
With endometriosis, I prefer to plan my years, months, weeks and even days to come.
We have to plan it [vacation] the week right after my period where I don’t feel the pain. When I’m on my period – I have seven days of being on my period – So that’s one week. The week after it’s like, okay, we can plan something there. And then every time I ovulate there’s a lot of pain, and then every time pre-PMSing, whatever you call it, that’s when I have another set of pains where I don’t know when it’s coming. So, it’s just planning around that one week that I have of relief. (40-year-old Southeast Asian woman)
In the accompanying photograph, a participant described the additional measures she took after the birth of her baby to ensure the child’s safety and care on days when she experienced multiple endometriosis symptoms. For her, using a playpen felt like an option that would help keep her child safe in times when her symptoms prevented her from moving quickly (Figure 10).
I’ve wanted to start a family with my husband beyond cats, so when I got pregnant, not only was I happy but also wondered how am I going to care for a baby when I’m falling apart at times (39-year-old South Asian woman).
Complexities of grappling with uncertain fertility
As a well-known side effect of endometriosis, subfertility, infertility, and unknown fertility were extensively conveyed by participants as issues that preceded and persisted during the COVID-19 pandemic, significantly affecting their mental health. Navigating fertility appeared to affect participants’ relationships with their partners, family members, health care providers, and themselves. Within partnerships, participants were compelled to reevaluate their fertility intentions and consider the implications of potentially being unable to achieve their future or life goals.
Because having a family later on down in my life and having children is one of my life goals that I wanted to achieve. And then just getting that news [that I might be infertile] was just really shocking and that just got me more anxious about what’s going to happen to me. (32-year-old East Asian woman)
For some, the primary hope for symptom relief was the removal of their ovaries and/or uterus, which meant losing the ability to have children. Fertility challenges, thus, contributed to difficult decisions about treatment, where participants indicated they needed to prioritize their health over their future fertility.
I kind of have to make decision between, I still want to have a baby or maybe I should have the hysterectomy. I just feel like, maybe it might be time that I have to give up about the baby thing. So, it’s really difficult for me during that time. And I felt really down, kind of like really down. I was thinking, I was crying, I just seemed to feel like everything is like black. It’s not gray, it’s not white, it’s just black. Everything just made me feel down. (42-year-old Southeast Asian woman)
As some participants grappled with treatments that would cause infertility, others navigated assisted reproductive technologies (e.g. in vitro fertilization) to get pregnant or preserve future fertility (Figures 11 and 12). These experiences overlapped with navigating gendered expectations, financial pressures, and hormonal changes.
Bruising from IVF medications.
First round of saving embryos (40-year-old East Asian woman).
For many participants, infertility was associated with feelings of grief, anxiety, depression, hopelessness, and impaired self-worth. Although experiences of infertility impacted mental health, the loss of control and uncertainty related to conceiving in the future also evoked profound anxiety, depression, grief, and loss for many participants. These feelings were conveyed as complex and coincided with gendered expectations related to motherhood, self-identity, and the perception of having disappointed their partner or family.
It’s the sense of being less fertile which I think – as a woman – sometimes makes you rethink about your worth, but also for me more specifically about the dynamic of our relationship. (33-year-old East Asian, Latina, Middle Eastern woman)
One participant grappled with the layered implications of their infertility. She always wanted to carry a pregnancy and – being more stereotypically masculine (masculine presenting, family “breadwinner”) – was looking forward to challenging heteronormative expectations of being more masculine and carrying a pregnancy. As she would likely need a hysterectomy, endometriosis and not carrying a pregnancy meant “reverting into heteronormative stereotypes of what a relationship looks like.”
Furthermore, familial and cultural expectations appeared to add to participants’ feelings of loss and pressure regarding fertility, where, even if they had made personal decisions about their fertility, these expectations intensified their stress and contributed to mental health challenges.
This photo* (and song: Clean – Taylor Swift) represents how I feel that being diagnosed with endometriosis and being South Asian comes with so much pressure and stigma. There’s so many cultural expectations for you to achieve things by a certain age, including having children. I’m not even sure I want children anymore, but I still get asked such personal questions by other people about when I’m getting married, having children etc. It feels very suffocating at times. (27-year-old South Asian woman) * photo shared by participant not used in publication due to copyright. Alt text: Photo is a digital image set on a white background speckled with black. A woman’s silhouette is centred in the frame with the phrase “hung my head as I lost the war” displayed prominently in capitalised white text across her neck and back.
Participants also shared multiple photographs of their severe abdominal bloating, referred to as “endo belly,” (Figures 13, 14, and 15) which they indicated made them look pregnant. Often, participants highlighted the irony in their situation – appearing pregnant but unable to conceive – and avoided others out of embarrassment and fear – both perceived and experienced – that others would think they were pregnant. For some, the body changes from hormonal treatments and endometriosis felt more pronounced due to cultural expectations of body size, which favoured smaller bodies. The persistent cultural belief that smaller bodies are better was conveyed as adding stress and anxiety when their bodies did not conform to these expectations, and guilt and pressure to eat certain foods to manage symptoms.
Once when I was at work, someone asked me if I was pregnant because my abdomen was so swollen.
The bloated endo belly effect comes along with this inflammatory condition; it makes me look pregnant, which people have mistaken for pregnancy.
Yet another month where endometriosis period bloating makes me look pregnant.
Discussion
In this qualitative study, participant photographs and narratives illustrated the impacts of the COVID-19 pandemic on the mental health of East, South, and Southeast Asian women living with endometriosis. The COVID-19 pandemic exacerbated existing disruptions, all of which impacted participants’ mental health. Notably, our findings also highlight that disruptions unrelated to the pandemic remained particularly significant, as these issues existed before the pandemic and likely would continue to affect participant’s mental health regardless of the global crisis. These findings highlight the value of an intersectional analysis, interpretation, and discussion, drawing attention to the structural factors impacting the mental health of East, South, and Southeast Asian women living with endometriosis.
Although experiences of racism towards Asian people increased globally during the COVID-19 pandemic, few participants described overt experiences of racism, or noted that racism contributed to worsening mental health. As previous literature has highlighted the race discrepancy in endometriosis diagnosis and care, 5 these findings (or lack of findings) could be due to the covert ways that racism operates systemically within structures, including health care institutions 43 and the difficulty in measuring the complexity of racism within research environments 44 The lack of findings related to experiences of overt racism may also be due in part to participant characteristics, where many participants of this study lived in larger cities 45 and/or had Canadian accents 46 which can lead to people being less likely to experience racism. Considering the intersections of gender and ethnicity, additional research could examine the influence of diagnostic times and intervention access on mental health among Asian women with endometriosis, as well as various racialized women.
We did, however, find that participants often cited culture, gender, and cultural expectations as influencing their mental health, rather than explicitly referencing racism. Nielsen-Bohlman and colleagues 47 highlighted the major role of culture in shaping how individuals think about their health and care-seeking behaviour. Similarly, the PEN-3 culture model posits that cultural identity, relationships, expectations, and culture empowerment all play roles in one’s health. 48 This model is used to explore the impact of culture on health behaviours 48 and could be important in understanding the cultural impacts of endometriosis and its overlap with gender.
Participants in our study discussed family expectations regarding fertility and household management, as well as pressures to look and act in certain ways, which conflicted with their experiences of endometriosis. In their publication on culturally competent endometriosis care, Abousifein and Leyland 49 explained that racialized patients experience more invasive procedures than White patients, and cultural taboos may prevent certain people from non-Western cultures from discussing personal and intimate topics, like endometriosis. Cultural taboos could also contribute to invalidation, invisibility, and stigma related to endometriosis experiences, as dismissal of symptoms by family, friends, and health care providers influence the mental health and quality of life of those with endometriosis. A study exploring experiences of stigma for Latina women with endometriosis highlighted that many participants experienced invalidation of symptoms by friends, family and health care providers. 50 Similarly, a study exploring Swedish people with endometriosis’ experiences of being in/validated showed that health care providers were more likely than friends and family members to be invalidating, and these experiences significantly impacted health-related quality of life. 51 Considering this, future research may benefit from a better understanding of the experiences of those with endometriosis, with a focus on knowledge translation to health care providers.
The presence, severity, and ability to self-manage endometriosis symptoms clearly influence mental health, as demonstrated in our study and others.7,52 Yet, our research also highlighted that mental health is not only shaped by endometriosis symptoms, but rather, the broader context in which they occur. The COVID-19 pandemic brought into sharp focus how disruptions in health care systems and structures interfered with usual coping strategies and created frustrations, worries, and distress.20,25 Similarly, disruptions in social interactions exacerbated isolation, increasing loneliness and worsening mental health. While growing evidence links social isolation and loneliness to adverse health outcomes across various conditions, 53 their impact appears underappreciated and underexplored in relation to endometriosis. Further, disruption in peoples’ relationships with family and friends altered the nature and availability of social support, with marked effects on mental health. 54 Recognizing the role of broader contexts in which people experience endometriosis suggests that addressing mental health requires more than symptom management. It likely necessitates improved access to multidisciplinary care, as well as opportunities and resources for building robust social connections and engaging others as desired.
Related to mental health impacts, anxiety and depression are well documented as commonly experienced by those with endometriosis.7,11 However, less amount of literature explores the nuanced feelings and emotions experienced by those with endometriosis, including guilt and loss of self-identity. Our findings suggest that guilt was commonly expressed with a profound effect on mental health. Although guilt is a complex emotion that is difficult to define, it is reported to be felt more commonly among adults with depression 55 and among females than among males. 56 Considering the characteristics of those with endometriosis, people with endometriosis may be more prone to feelings of guilt. This lack of data could indicate that more research is needed to unpack the nuanced emotions and gendered experiences, impacting the mental health of those with endometriosis outside anxiety and depression.
Our findings showed that micromanaging and overplanning are common activities among participants seeking to regain a sense of control due to the uncertainties associated with endometriosis. Participants commonly reported overplanning or micromanaging as ways to ensure their careers, households, and relationships could continue to run smoothly even if they were experiencing unmanageable symptoms and could not complete their regular tasks. This overplanning also extended to symptom control; before leaving their homes, participants often took proactive steps in case of endometriosis symptom flare-ups. This suggests an increased mental load or disease burden associated with endometriosis. Similarly, participants seemed to take on additional invisible labour to navigate life with endometriosis. Invisible work, emotional labour, and mental load are all terms commonly used to describe the additional burden of cognitively demanding tasks that often go unrecognized and are disproportionately taken on by women in heterosexual relationships. 57
Little research exists related to mental load among people with endometriosis. In their narrative review aimed at illustrating the burden faced by those with endometriosis, van Stein and colleagues 58 reported that increased mental load can result in higher levels of symptom-related stress, which can lead to challenges such as social isolation, difficulties with romantic relationships, and work issues that affect quality of life. Of note, most information documenting invisible work, emotional labour, and mental load related to endometriosis is found in grey literature, either from advocacy organizations or from personal stories shared by those with endometriosis.59-61 In some situations, those with endometriosis explain how the mental load of navigating the condition can be as impactful as the physical symptoms. 61 In sum, these findings and the limited research related to mental load and invisible labour of endometriosis – particularly considering that endometriosis is predominantly experienced by cisgender women and those presumed female at birth – may point to a need for additional research and interventions that address more than just the physical burden of the disease.
Lastly, our findings suggest that further exploration of relationships outside heteronormative and monogamous configurations is warranted, as preliminary data indicated that some individuals navigate their intimate partnerships and sex lives differently due to experiences of endometriosis. For example, one participant described a polyamorous relationship as a viable solution for her and her partner, which runs contrary to normative expectations. Ultimately, exploring how individuals with endometriosis who experience painful sex navigate sexual activity and relationships outside normative configurations could provide additional insight into quality of life.
Clinical and policy implications
While we recognize this is a qualitative photovoice study with a small sample size and have discussed areas in which more research is needed, our findings highlight the potential for clinical and policy implications. More specifically, our findings point to the need for endometriosis care that is multidisciplinary, trauma-informed, 62 and engaged with cultural humility. 63 Despite our findings not highlighting overt racism experienced by participants, many have shared negative experiences within health care settings 64 and previous literature has identified the importance and need for educational resources and training for health care providers due to implicit bias and racism embedded within health care systems.65,66
Strengths and limitations
Strengths of this study stem from the use of participant-generated photographs to anchor the interviews and our subsequent analysis of the experiences and mental health challenges that mattered most to participants and that were depicted in the context of their lives. Moreover, the use of images, narratives, and an intersectional theory as a sensitizing lens helped illuminate the ways that gender, culture, age, sexuality, relationship status, and illness coalesced to shape the endometriosis experiences and mental health during the COVID-19 pandemic for East, South, and Southeast Asian women. Lastly, engagement with patient partners throughout the research process, and specifically with reviewing research findings, provided an invaluable perspective on the interpretations of the findings.
We acknowledge that our findings may not be broadly generalizable since all participants were recruited from one province in western Canada. However, qualitative research is not intended to be generalizable but rather offers insights that might be transferable to other contexts. Additionally, categorization of participants into broad ethnic groups may oversimplify the complexities of culture. Of note, we excluded individuals who did not speak English, who did not have access to technology to capture and virtually share photographs, and who were unable to participate in a Zoom interview. Thus, the mental health challenges of non-English speakers with limited access to technology are not described in our findings. Only including participants who were English speakers and BC residents were key constraints to this research. Moreover, the characteristics and positionality of the researchers, particularly the ethnicity of the interviewers who were White, may have influenced the findings, as participants may have been more comfortable sharing experiences with those with the same cultural and/or ethnic background.
Conclusion
Experiences of endometriosis are complex and influenced by multiple aspects of identity, including age, culture, sexuality, gender, race, location, and the COVID-19 pandemic. While racism was not highlighted by participants as overtly affecting their experiences of endometriosis during the pandemic, covert racism and culture may play significant roles. Similarly, the burden and experiences related to the condition may be more impacted by gender, considering that endometriosis predominantly affects women and those presumed female at birth. The impacts of endometriosis on the mental health of those experiencing it are not limited to a global pandemic. Mental health must be considered as an invaluable indicator of the need for support at multiple levels and trauma-informed, multidisciplinary care.
Supplemental Material
sj-pdf-1-whe-10.1177_17455057251414300 – Supplemental material for Impacts of the COVID-19 pandemic on the mental health of Asian women with endometriosis in Canada: A photovoice study
Supplemental material, sj-pdf-1-whe-10.1177_17455057251414300 for Impacts of the COVID-19 pandemic on the mental health of Asian women with endometriosis in Canada: A photovoice study by Kerry Marshall, A. Fuchsia Howard, Nisha Marshall, Heather Noga, Natasha L. Orr, Hannah E. Rojas, Anna Leonova, Jessica Sutherland, Erin Fernie, Vinita Puri, Roop Bassra and Paul J. Yong in Women's Health
Footnotes
Acknowledgements
We would like to acknowledge the Endometriosis Patient Research Advisory Board at the University of British Columbia for their unwavering support.
ORCID iD
Ethical considerations
Ethics approval for the study was granted by the University of British Columbia Children and Women’s Research Ethics Board (H22-02390).
Consent to participate
Informed written and verbal consent was received prior to interviews. All participants provided consent for their photographs and captions to be used in publications.
Consent for publication
Informed written and verbal consent was obtained from the participants for the publication of photographs and quotes.
Author contributions
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). AFH was further supported by a Scholar Salary Award and PJY by a Health Professional Investigatory Salary Award from the Michael Smith Health Research BC. PJY 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 analysed during the current study are not publicly available as participants did not consent to making their data publicly available.
Supplemental material
Supplemental material for this article is available online.
References
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