Locked inside: Living with uncertainty in self-management for endometriosis during the COVID-19 pandemic

All procedures performed in this study involving human participants were in accordance with the ethical standards of the institute and the 1964 Declaration of Helsinki and its later amendments.

This research did not receive any specific grant from funding agencies in the public, commercial or non-for-profit sectors.

Respondent demographic/clinical characteristics and mean psychological distress scores are displayed in Table 1 , with mean scores in the moderate range for depression, anxiety, and stress [ 27 ]. Table 1 Respondent demographic characteristics ( N  = 21). Table 1 Characteristic N (%) Age (years) – M ( SD ) 34.8 (9.8) a Female 21 (100) Married/de facto 13 (62) Sexual orientation  Heterosexual 18 (86)  Bisexual 2 (10)  Gay 1 (5) Have children (yes) 6 (29) Employment status  Full-time (incl. Self-employed work) 13 (62)  Part-time/casual 5 (24)  Unable to work (for medical reasons or otherwise) 2 (10)  Home duties 1 (5) Race  White or European 17 (81)  Indigenous Australian/Torres Strait Islander 1 (5)  Middle Eastern 1 (5)  Latin American 1 (5)  Preferred not to say 1 (5) Metropolitan 14 (67) Diagnosis method  Surgical procedure 15 (72)  Ultrasound or MRI 2 (10)  Combination 4 (19) Diagnostic delay (years) – M ( SD ) 9.4 (7.8) Self-rated endometriosis severity  Mild 1 (5)  Moderate 11 (52)  Severe 9 (43) DASS-21 – M ( SD )  Depression 8.7 (6.4)  Anxiety 6.7 (6.5)  Stress 10.1 (5.5) Notes. a Age range: 22–60 years. Respondent demographic characteristics ( N  = 21). Notes. a Age range: 22–60 years. We generated five themes from the template analysis. Four themes related to how self-management strategies changed, namely: Maintaining Relationships with Health Professionals, Altered Information Seeking Strategies, Challenges of Decision Making, and Enactment of Self-Care and Behaviour Change. The remaining theme related to the consequences of these changes, namely: Shifted Priorities. Each theme is supported with illustrative quotes linked to a respondent ID number (IDXXX). Indications of proportions of respondents reporting in each theme are made using quantifiers (some, many, most, or all). Additional quotes are provided in Supplementary Material. Respondents outlined difficulties in sustaining critical interactions with health professionals in the Australian healthcare system beginning in early 2020 moving forward into 2021. For many, experiences of the healthcare system had been largely negative prior to the pandemic, but this was reported as having worsened due to pandemic-related restrictions and delays. Most reported negative experiences related to reduced/altered access to health professionals (GPs, specialists, allied health): “Actually getting an appointment was hard, and then you'd have to …. isolate and have your [COVID-19] test beforehand…. which is not ideal if you're needing to see someone more rapidly” (ID113) and “Even if you did do other complementary therapies to try and stay relaxed and manage pain symptoms, they were cancelled and then you just can't go” (ID118). Some reflected on differences between seeking services in the public and private healthcare systems: “I found the public system to be very hard, because there's only so many doctors that specialize in endo…. When you don't have private health [insurance]…you can't really access any private doctors that specialize in it” (ID111). Conversely, some respondents reported positive outcomes particularly the helpfulness of mental health professionals during the pandemic: “I'm really lucky that my GP …. did have an in-house counsellor… the illness was giving me major anxiety, so I actually end(ed) up seeing that in-house counsellor about that (anxiety) which was really helpful” (ID121). Many were dissatisfied with telehealth or phone consultations, reflecting a preference to be seen in person by their health professionals: “I couldn't actually go and physically see someone…I feel like when you are in a room with someone… you can talk about things a little bit more, rather than on the screen. And I suppose mine were…mostly all on the phone…I kind of did feel rushed, because you know doctors are busy, they're in demand, during COVID…” (ID106). In contrast, some reflected positively about the utility of e-scripts prescribed via telehealth consultations: “Another thing that's been really handy is e-scripts, so when I do have a telehealth appointment with my doctor you can send me an e-script” (ID101). Most reflected negatively on restricted access to treatment options during the pandemic with cancellations, postponements, and inaccessibility to elective surgeries (e.g., laparoscopic) diminishing their ability to manage the mental and physical burdens of their condition: “A lot of my surgeries got put off because there were no elective surgeries… And then it was just more pain management, and I just spent my whole time at home, basically…. the pain just went on for longer - I couldn't work, so that was really hard” (ID131) and “I generally need one (laparoscopic operation) every four to five years…and you're locked out in your home, you're dealing with pain, there's no way that you can get any hope around that” (ID111). Some reported added burden regarding disruptions caused by the sudden recommencing of elective surgeries under COVID-19 restrictions: “If they ever had a lockdown then they would just stop the elective surgeries. And then they called me with a date… ‘we're going to get you in in three weeks’…so, I started to …panic because I only had three weeks to…organize everything…” (ID102). Difficulties in sourcing and rationing painkillers were noted by some: “Any medications that they prescribe you…everything's just in short supply so that script might only last you for 30 days…that's very frustrating to me” (ID111). Likely related to the increased negative perceptions of communications with health professionals arising from the COVID-19 pandemic, respondents reported that their information-seeking patterns changed following the pandemic so that endometriosis support groups, research or community organisations, and social media were highly utilised: “(I've) done a lot of online research… just reading lots of literature and lots of research articles…in the form of like Facebook pages and things like that” (ID106). As a readily accessible source of information, online resources can provide information that fills missing gaps in what can be provided from health professionals. However, since there is no formalised vetting of the veracity of this online information, for many this was seen as a last resort, and not the typical means by which information about endometriosis was obtained by the respondents. Reflecting a shift in information seeking sources due to reduced health professional contact, one respondent noted: “I think I've sought out information more over podcasts and stuff, I feel like I've kind of started to grow used to the idea that I've got my diagnosis and I'm meant to just manage it on my own now” (ID112). This reflects not only a shift in where information about endometriosis management was sourced, but a shift in the perceived responsibility to seek out the needed information. Endometriosis-related decision-making was also reported to have changed. Over the course of the pandemic, respondents reported making more decisions about the management of their condition on their own: “You would expect to go to a doctor and get told A, B, and C and it will be fixed, whereas because it's not happening, I just go ‘okay well I'm just going to try what I think they would say to do’, get more exercise and endometriosis diet” (ID130). This dynamic appeared to relate strongly to the worsened quality of interactions with health professionals and increase in alternate sources of information seeking. In this way, respondents reflected that they needed to seek support and information from somewhere and, if health professionals were not available, they would make decisions themselves. For some, the responsibility of autonomous decision-making heightened concerns: “Like it's hard because I don't really understand the effects (of treatment options) …I've got a lot of pain but I'm afraid about putting certain hormones in and then the effects on my mood. And they don't really talk to you about a lot of stuff. You've got to do research yourself and it's kind of trial and error” (ID114). For others trained in medical matters increased autonomous decision-making was empowering: “I keep going back to my (nursing) degree, but I think making more informed decisions, and knowing that I do need to stand up for myself and not kind of let doctors plan that pathway for me has really changed” (ID106). This dynamic may reflect the inherent advantages of more health literate, educated, and/or wealthy individuals diagnosed with endometriosis, such that those less educated or fortunate may struggle to make decisions regarding their endometriosis during a time when they are cut off from health professionals and the wider health system. Following the COVID-19 outbreak, self-management was reportedly different for most, with less self-care. This was clearly a result of lockdowns and other societal restrictions, with some elements reflecting wide societal patterns. For example, self-care domains adversely affected included physical activity, sleep, healthy eating, and socialising: “I've got the time to look after myself more but a lot of things that I would do for self-care involved going out and being with somebody else, so I'd say that's gone down the drain” (ID108) and “My sleep is really bad. And like exercising, I've gained a lot of weight in the last two years just because you just don't want to get out of bed” (ID131). These reports appear to reflect the additional difficulty for those diagnosed with endometriosis during the pandemic: “I wasn't exercising as much and because I wasn't able to engage in those feel-good activities and get myself moving, you know…I really felt it in my lower back, and I really felt it like in the pelvic region not being able to move around. It definitely made the symptoms a lot worse” (ID118). This reflects that those diagnosed with endometriosis were prevented from engaging in activities which are typically recommended to manage their pain alongside mental health symptoms which have knock-on effects for chronic pain. Almost all respondents reflected on life preferences or routines having changed on account of managing their endometriosis during the COVID-19 pandemic. Most reported avoiding social situations following the outbreak: “If you're at home a lot you lose your confidence in yourself. It's probably all connected in a way, like when you get pain, when you feel tired, you stay home like it's the easy option.” (ID114). For some, this was an attempt to avoid COVID-19: “I'm nervous about being with other people; I used to have a group of friends and we just used to meet…every couple of weeks but I don't do that anymore …and it's not just them… (not being) particularly careful but because they're mixing with larger groups.” (ID108). For others, social distancing decreased social pressures: “One of the major impacts…was it relieves the pressure of having to socialize…. I suddenly didn't have all this pressure and feeling of guilt for constantly saying no to things with my friends” (ID121). It appeared that many individuals diagnosed with endometriosis were relieved of pressure to be present or perform in social lives whilst masking their discomfort or pain. Conversely, work-from-home (WFH) requirements were positively received by most, with many reflecting on the beneficial impact upon their lives and routines: “It's actually been really awesome for managing endometriosis because I can sit here in my comfy pyjama pants with a hot water bottle on my stomach and be screaming in pain…without my colleagues hearing” (ID101). For some, this provided opportunities to learn how to better manage endometriosis: “The last two years gave me time to learn about my body and what I need and what I don't need and… I realized that I'm in a lot of pain at the same time every day” (ID130). For some, WFH requirements normalised their usual self-management strategies: “It did kind of feel like I could stay in my pyjamas all day on those days when I was in pain; I could sit there with my heat pack and not be ashamed which helped mentally” (ID117). Others outlined experiencing a refocusing of self-care priorities following the pandemic: “I was someone who would burn out. I would always be overbooked…. So, lockdown was really about listening to podcasts, getting in touch with myself again. I'm just understanding my boundaries and limits and setting them.” (ID125). This reflects the tension experienced by those diagnosed with endometriosis, such that they live in a world which is structured around attending workplaces which may not allow them to manage their endometriosis in a conducive way for their own wellbeing. Many balanced these positives by addressing an increased sense of rumination. This was a problem for many since spending more time indoors and being isolated led to increased focus on their endometriosis symptoms: “…there's nothing really to distract you other than the fact you know, you're having this flare up and that's kind of, you know, the centre of that day or that week or those couple of days” (ID106). Many noticed a heightened awareness of symptoms: “I think if I was in the office, I'd be able to get up, go out, get some air, grab a coffee, have a chat to somebody. You're not distracted by everything else, so you feel everything a lot more” (ID118). The lost sense of distraction from pain symptoms appeared to leave some diagnosed with endometriosis without the necessary skills or resources to manage pain effectively in their pandemic lives. For some older respondents, the pandemic activated feelings of learned helplessness attributed to a history of being ignored or misdiagnosed, thereby diminishing their self-management ability: “My (health) decision-making…is pretty much non-existent…I used to say that I would want to go into a shop and buy a new uterus… I was even thinking about having a hysterectomy because I was just sick of the fighting with doctors and trying to find doctors…I couldn't get away from it, so I was in a constant state of just being disassociated from everything so, if I was feeling pain, I'd kind of just sit in it myself” (ID122). This sense of helplessness may have been compounded by reluctance to utilise overburdened emergency services (e.g., ambulances, emergency departments) during the pandemic: “I'd avoid (emergency services) if I was in pain and stuff like that, I would probably…tough it out than…present to an emergency room…I always have that underlying fear of being brushed off, which can often happen” (ID113). Some avoided emergency services out of fear of catching COVID-19: “Since the pandemic began, I have actually ignored a lot of my symptoms. I know I've got some really bad adhesions…. and I know that if COVID wasn't around, I would have…called an ambulance a couple of times they've been that bad…it's stopped me from looking after myself basically…because of COVID, …I wasn't worried before; now, I'm worried” (ID108).

Informed consent was obtained from all individual respondents included in the study.

Between July and August 2022, individuals with (self-reported) endometriosis, who were residing in Australia during the COVID-19 pandemic and participated in a quantitative survey investigating aspects of self-efficacy and mental health, indicated their interest to participate in this semi-structured interview study. The consumer organization, Endometriosis Australia advertised this research via social media. Additional inclusion criteria were being aged at least 18 years old, English-language competent, and having internet access. Of 441 individuals registering willingness to participate, study respondents were purposively sampled based on several factors to obtain representative sampling [i.e., age, sexual orientation, ethnicity]. This study achieved a sample size of 21, consistent with prior qualitative endometriosis research [ 4 ]. Before interviews, respondents provided electronic informed consent. All interviews were conducted by Author 1 and recorded via Zoom. Semi-structured interviews were guided by open-ended questions informed by prior research [ 34 ]. Questions were designed to explore perspectives and experiences related to the research questions (see Supplementary Material) during the period March 2020 to October 2021, including a period during which lockdowns were introduced and removed. Mean interview duration was 40 min. Respondents' demographic/clinical characteristics and psychological distress [Depression and Anxiety Stress Scale, DASS-21 [ 27 ]] were collected via the quantitative survey. Study approval was granted by the Macquarie University Human Research Ethics Committee (Reference no: 520211078335761). Quantitative data were summarised using descriptive statistics. Two researchers analysed qualitative data: a postgraduate student provisional psychologist (Author 1) and an undergraduate student researcher (Author 3); a senior health psychology researcher had oversight (Author 2). Recorded data from interviews were transcribed and thematically analysed using a template approach [ 10 ] guided by a six-stage inductive method [ 9 ]: 1) familiarisation with the dataset, where Authors 1 and 3 read a random sampling of the dataset (three interviews in total), actively searching for patterns and meaning by keeping notes, 2) preliminary coding of the data, where Authors 1 and 3 separately formed initial codes by organising data into meaningful groupings, 3) initial theme organization, where Authors 1 and 2 defined how initial themes relate to each other, 4) defining an initial coding template, where Author 1 consolidated themes and provided this to Author 2 for feedback, 5) application of initial template to further data with modifications as necessary, where Author 1 examined the rest of the dataset to find where the template can be used to represent meaningful data and whether additional themes are required, and 6) finalising the template and application to full dataset, where Author 1 ensured all sections of data relevant to the research questions were appropriately coded under supervision of Author 2. The researchers selected the template approach given its utility in using a priori themes (O'Hara et al. [ 34 ]), enabling the researchers to focus on key areas that were expected to be relevant to the research question, based on the extant literature [ 10 ]. A combined approach to coding was taken. we used five themes identified by O'Hara et al. [ 34 ] for a deductive search for self-management strategies. These themes were: Relationship with health providers, Information seeking, Monitoring symptoms, Decision making, and Self-care tasks/behaviour chage/complementary therapies. Over the course of data analysis, these five themes were modified and altered as appear below. An inductive approach was taken for any further themes. A critical realist ontological perspective guided the current study; this assumes that what is known by humans captures a small proportion of a deeper reality [ 20 ]. An interpretivist approach to epistemology was used; the values, beliefs, and experiences of the researchers were assumed to play immutable roles in collection and analysis of data [ 41 ]. These approaches allowed the researchers to accept that respondents' experiences were their reality within the post-COVID-19 social context, whilst remaining mindful of biases that may influence data analysis.

This qualitative analysis highlights that the COVID-19 pandemic provided significant challenges to individuals managing endometriosis, forcing them to enact self-management strategies differently or face significantly increased burden. Additional mental health concerns were identified, particularly related to an overburdened healthcare system with reduced capacity. The Maintaining Relationships with Health Professionals theme, characterised by increased difficulty from restricted treatment and management options and the perception that telehealth alternatives were not adequately meeting their needs, was consistent with research in other countries [ 37 , 40 ]. Reluctance expressed by respondents to utilise overburdened emergency services during the COVID-19 pandemic adds to earlier reports of negative experiences following presentation to emergency services for endometriosis [ 32 ]. A novel finding was that this reluctance was associated with dual fears of contracting COVID-19 and being poorly serviced by overloaded emergency services. Anxiety related to the perceived additional risk of managing endometriosis along with COVID-19 may have contributed to this reluctance to utilise emergency services, as was documented for other chronic illnesses [ 48 ]. The relatively strong representation of rural-residing respondents may have contributed to expressed reluctance to use emergency services since these services are limited in regional areas [ 38 ]. Further, our findings underline the importance of additional resources which are time-sensitive and accessible to optimally support those diagnosed with endometriosis. Australian interventions aiming to provide such support should be further encouraged, with some preliminary evidence of efficacy for a text-message based resource [ 44 ]. Novel observations were made regarding respondents' ability to enact self-management for endometriosis. Self-management strategies adopted by respondents were similar to prior reports [ 34 ], yet we identified significantly altered ability to seek information and make decisions regarding their endometriosis. Fewer interactions with healthcare providers during the pandemic appeared to precipitate increased information seeking via social media and endometriosis consumer organisations, as reported in chronic illness populations [ 36 ]. For most, more autonomous health-related decision making led to heightened feelings of uncertainty. Reliance on social media for self-management information is risky as this may not be empirically-evidenced [ 49 ], yet inadequate provision of reliable information is associated with low uptake of self-management strategies [ 2 ]. Worsened ability to enact such strategies may be particularly burdensome for those experiencing higher distress or heightened severity of endometriosis, both of which were common in the current study. These findings further highlight the burden placed on those managing endometriosis during a global pandemic, wherein reduced health professional interaction leads to individuals consulting potentially non-evidenced based information. In the Shifted Priorities theme, respondents also noted the benefits to their management of endometriosis after working or studying from home during the pandemic; the privacy of home afforded them more freedom to enact specific self-management strategies (e.g., wearing comfortable clothing, using heat packs), similar to prior research [ 5 ]. Moreover, greater workplace flexibility which was noted in the current study may enhance productivity and wellbeing from the management of pain in the comfort of homes as found in previous Australian endometriosis research [ 19 ]. These findings reflect recommendations to establish guidelines to aid in the accommodation of flexible work (e.g., self-managed working hours and more frequent rest breaks) for Australians diagnosed with endometriosis [ 5 ]. A novel finding in our study related to ongoing avoidance of social situations, consistent with WFH preferences. Individuals were presented with a conundrum; having recently experienced life without social pressure during lockdowns, they were unsure how to reinstate pre-pandemic social lives alongside newfound effective endometriosis strategies. Individuals are forced to choose between activities that may aid mental health but that may potentially hinder self-management of endometriosis physical symptoms. This was compounded by perceived risks of contracting COVID-19 outside of the home and the potentially negative ramifications of this for endometriosis management. COVID-19 related fear has been associated with fewer self-management actions in chronic condition populations [ 23 ]. In addition, rumination (i.e., persistent, intrusive negative thoughts) and lacking positive distractions (e.g., social interactions) appeared to increase feelings of pain and discomfort from their symptoms; these are known risk factors for depression, anxiety, and stress [ 46 ]. Moreover, the elements of learned helplessness reported by older respondents combined with ruminative thought patterns likely add to excessive pain over and beyond what those diagnosed with endometriosis already experience, contributing to poorer clinical outcomes [ 50 ]. Taken together, it is evident from these interviews that the COVID-19 pandemic has resulted in increased burden on individuals with endometriosis. There is a need for targeted psychosocial interventions designed to help individuals navigate the complexities and shifted priorities arising from the COVID-19 pandemic. Since information-seeking was highly utilised during the pandemic, accessible and reliable sources of information and decision aids [ 42 ] are needed to empower individuals to make informed decisions about endometriosis management. Cognitive behavioural therapy, a useful and well-tolerated therapeutic approach in endometriosis contexts [ 18 ], may assist with mitigating the rumination and social avoidance documented above. Mindfulness-based strategies may also help target pain-based rumination through meditation and cognitive defusion techniques [ 29 ]. Given the unique burdens conferred by managing the condition during a pandemic which restricts social movement, further research regarding the utility of interventions in addressing the challenges uncovered in this study (e.g., pandemic-incentivised social avoidance and symptom-based rumination) is warranted. There are several study limitations to note. This sample only included individuals identifying as female, the majority of whom were partnered in heterosexual relationships. There was low representation of individuals from an Aboriginal or Torres Strait Islander background. Nevertheless, the study captured a variety of experiences with a diverse age range. All respondents were recruited through social media channels affiliated with Endometriosis Australia, potentially biasing the sample towards those who are either more actively engaged/socially supported or more adversely affected by endometriosis as evidenced by the high level of psychological distress reported in this sample [ 45 ]. Applying qualitative analyses to these data entails the inherent biases of the researchers who are based in a Western culture and affluent society; more cross-cultural research is needed to reflect the full diversity of individuals living with endometriosis. In summary, this qualitative study provided an in-depth understanding of the impact of COVID-19-related societal changes on individuals living with endometriosis. On balance, most respondents reported adverse impacts from physical, psychological, and social perspectives. With no foreseeable end to the COVID-19 pandemic, and warnings of risks for future pandemics [ 28 ], targeted resources and interventions are needed to enable individuals living with endometriosis to initiate and sustain self-management practices. These must be well-informed, empirically evidenced to aid overcoming uncertainty regarding treatment plans and difficulties re-engaging in pre-pandemic lives.

The authors have no competing interests to report.