Abstract
Fatigue is a common, secondary symptom of endometriosis that has not been qualitatively explored. We conducted individual, face-to-face interviews with 25 women in South Africa about their experiences of endometriosis-related fatigue. Participants were recruited at a public hospital in Cape Town and through several South African endometriosis organizations. Interviews were conducted in English and Afrikaans and ranged from 30 min to 1 hr 16 min in duration. All interviews were audio recorded and transcribed. Interviews were analyzed using thematic analysis. We found that both the experience of fatigue and fatigue-management strategies were highly personalized. Participants reported using a variety of cognitive strategies, such as planning, pacing, and pushing through their fatigue to reduce the levels of fatigue. Participants also employed physical strategies such as rest, dietary changes, using supplements, and exercise. We found that while participants often tried fatigue-management strategies suggested to them by others, they struggled to maintain these strategies even when they were successful. There are currently no interventions aimed at reducing endometriosis-related fatigue. The findings of this study provide insight into the management of fatigue in women with endometriosis and may be used to develop a psychosocial intervention for fatigue among women with the disease.
Endometriosis is a common, chronic, gynecological illness that affects several domains of quality of life such as physical, social, and psychological domains (Hickey et al., 2014; Jia et al., 2012; Roomaney & Kagee, 2018; Young et al., 2015). Endometriosis refers to the presence of endometrial-like tissue outside the uterus that causes inflammation, pelvic pain, and contributes to infertility (Farquhar, 2007; Hickey et al., 2014). The primary symptoms of endometriosis are pain during and after sexual intercourse (dyspareunia), painful menstruation (dysmenorrhea), chronic pelvic pain (CPP), infertility, and pain during passing of stools (Ballard et al., 2008; Mao & Anastasi, 2010). The secondary symptoms of endometriosis are fatigue, lethargy, heavy menstrual bleeding (menorrhagia), constipation, and abdominal bleeding (Mao & Anastasi, 2010). Fatigue is an overlooked secondary symptom of endometriosis that has not been explored in research, even though participants in a few qualitative studies have indicated that endometriosis-related fatigue affected their well-being (Culley et al., 2013; Gilmour et al., 2008; Huntington & Gilmour, 2005; Jones et al., 2004; Moradi et al., 2014; Roomaney & Kagee, 2018).
Fatigue is defined as a subjective persistent, individual feeling of exhaustion or tiredness that is not improved by rest (Pigeon et al., 2003; Tack, 1990) and is associated with chronic illnesses such as osteoarthritis, rheumatoid arthritis, cancers, and multiple sclerosis (Berger et al., 2015; Braley & Chervin, 2010; Minton et al., 2013; Nikolaus et al., 2013; Power et al., 2008). At the time of this study, only one study explored fatigue among women with endometriosis (Ramin-Wright et al., 2018). These researchers compared the prevalence of fatigue among females with endometriosis (n = 560) to those who did not have endometriosis (n = 560). Participants were recruited from private practices and hospitals in Germany and Austria. Results indicated that 50.7% of females with endometriosis reported experiencing fatigue, whereas only 22.4% of females without endometriosis reported experiencing fatigue. Moreover, persistent fatigue in females with endometriosis was associated with occupational stress, symptoms of depression, insomnia, pain, and a high body mass index. There was no association between age, disease stage, time of first diagnosis, and fatigue (Ramin-Wright et al., 2018). While fatigue among women with endometriosis remains relatively unexplored, researchers have investigated fatigue among patients with other chronic illnesses.
A recent metasynthesis of qualitative studies regarding the experience of fatigue among patients with multiple sclerosis, rheumatoid arthritis, heart failure, chronic obstructive pulmonary disease, and chronic kidney disease concluded that fatigue was commonly referred to as severe energy depletion or lack of energy by patients that negatively impacted their lives (Jaime-Lara et al., 2020). Considering the high prevalence of fatigue among women with endometriosis (Ramin-Wright et al., 2018), the ability to manage fatigue is key to patient well-being.
Fatigue management
Fatigue-management strategies are implemented by patients in an attempt to reduce their fatigue. Few qualitative studies have explored fatigue-management strategies among patients. Interviews with 25 patients with end-stage kidney disease found that patients relied of three dominant fatigue-management strategies. These included accommodating activities around fatigue, increasing activity to counteract fatigue, and by practicing self-compassion when they experienced fatigue (Picariello et al., 2017; Scott et al., 2011). Similarly, interviews with 10 patients diagnosed with rheumatoid arthritis also concluded that accommodation and self-management were important strategies to reduce fatigue, especially since health professionals did not discuss fatigue or fatigue management among patients (Minnock et al., 2017). A content analysis of 47 women with recurrent ovarian cancers revealed a number of fatigue-management strategies (Hagan et al., 2017). The most commonly employed strategies included conserving energy by planning (a technique referred to as pacing), prioritizing activities, engaging in light physical activity, seeking care or referral from healthcare providers, rest, and nutrition (Hagan et al., 2017). Social support may also help patients in managing fatigue (Jump et al., 2005; Tsai et al., 2010). Social support refers to the social assets that people see to be accessible or that are really given to them by non-professionals with regard to both formal care groups and casual helping relationships (Gottlieb & Bergen, 2010). Family and friends can help the patients with fatigue by assisting with household chores for the patient to conserve energy for other day-to-day tasks that they value the most, such as self-care, childcare, or their careers (Scott et al., 2011; Tsai et al., 2010).
Pacing is a commonly used fatigue-management strategy that refers to alternating periods of rest and activity and is based on the energy envelope theory (Brown et al., 2013; Goudsmit et al., 2012). According to the energy envelope theory, individuals should pace activity in relation to their available energy supply. Patients should not over-exert nor under-exert themselves but maintain an optimal level of activity. The theory postulates that if an individual’s expended energy levels are within the envelope of the available energy levels, they will be able to sustain psychological and physical functioning, while decreasing severity and frequency of fatigue (Brown et al., 2013; Jason et al., 2008). Pacing has been used as an intervention strategy for fatigue in several studies but has not always demonstrated efficacy (Brown et al., 2013; Goudsmit et al., 2009, 2012; Kengen Traska et al., 2012; Murphy & Krat, 2014; Murphy et al., 2010).
Patients may develop their own fatigue-management strategies when not explicitly taught about strategies. While several studies have explored the impact of pain and other symptoms of endometriosis and how patients cope with these symptoms (Huntington & Gilmour, 2005; Moradi et al., 2014; Roomaney et al., 2018; Zarbo et al., 2018), no studies have explored how patients with endometriosis cope with their fatigue. Our aim is to describe fatigue-management strategies used by women diagnosed with endometriosis.
Method
Participants
A qualitative study was conducted as there were no qualitative studies exploring fatigue in endometriosis at the time. We used convenience sampling to recruit participants. Participants were recruited from two sources. The first was a public hospital in Cape Town and the second was by advertising the study via local endometriosis societies. Recruitment at the public hospital took place in person, where doctors and nurses introduced endometriosis patients to the researchers who informed patients about the study and gave them the option to participate. Recruitment through the endometriosis societies entailed placing a flyer on their websites and social media platforms, inviting potential participants to contact the researchers for information on the study. Women then contacted the researchers via email, indicating their interest in the study. Upon contact, we informed participants about the nature of the study, what participation entails and ethical consideration. At this point, participants were screened for eligibility. To participate in the study, participants had to be above 18 years of age, surgically diagnosed with endometriosis and have experienced fatigue that impaired daily functioning. Potential participants were asked to rate their fatigue on a scale from 1 (little fatigue) to 10 (severe fatigue) and only women indicating a score of 6 or higher were included in the study. Women meeting the inclusion criteria and who indicated that they wanted to participate were invited to attend a face-to-face interview. Participants were asked whether they had any other chronic illnesses.
The participants in this study consisted of 25 women diagnosed with endometriosis. Participants’ age ranged from 22 to 45 (mean age = 35 years). Of all the participants, 10 indicated their relationship status as single, 13 as married, 1 as divorced, and 1 as separated. Many participants did not have children (n = 13) while eight had one child, one had two children, and two had three children. Regarding their first language, 12 spoke Afrikaans, 8 spoke English, 2 spoke Setswana, another 2 spoke IsiXhosa, and only 1 spoke IsiZulu. Also, 1 participant mentioned that her highest level of education was Grade 11, 6 participants reported that they completed high school, 13 participants stated that they completed tertiary education, and 5 participants reported starting tertiary education but not graduating. Most of the women in the study were employed full-time (n = 18), one was a full-time student, one was employed part-time, and five were unemployed. Participants did not report any additional chronic illnesses that could have contributed to their fatigue, except for one, who reported that she was previously diagnosed with depression. Participants were from several locations in South Africa including Cape Town, Johannesburg, Stellenbosch, Krugersdorp, and Springbok.
Instruments
Demographic questionnaire
We asked participants for information related to their age, living situation, relationship status, income, highest education level, number of children, and employment.
Semi-structured interview schedule
We developed a semi-structured interview schedule that explored women’s experiences of fatigue, their conceptualization of fatigue, and fatigue-management strategies. Some questions included the following: “Please describe your energy levels on a typical day”; “Can you tell me what you do when you are feeling fatigued?”; and “Has anyone given you any good advice about how to manage your fatigue? If so, please tell me more.”
Procedure
We conducted interviews in English and Afrikaans at venues that were convenient for participants such as their homes, private meeting rooms at their work, a private room in the hospital, and an office at the department of psychology where the researchers are based. Interviews ranged from 30 min to 1 hr 16 min in duration. The researchers used the interview schedule to structure the interview. Participants received R100 gift voucher as a token of gratitude for being part of the study. All interviews were audio recorded and transcribed.
Ethical considerations
This project received ethical approval from the Health Research Ethics Committee (HREC) at Stellenbosch University (N17/10/099) and permission to conduct the study at the public hospital was granted from the Western Cape Department of Health. Permission to post the flyers on the endometriosis societies social media platforms were obtained from administrators prior to advertising the study. All participants provided written informed consent and pseudonyms were used throughout the study. Hard copies of consent forms are kept in a locked cupboard in the investigator’s office and electronic files are kept on password-protected laptops. All data will be destroyed 5 years after completion of the study.
Data analysis
All interviews were transcribed and we used ATLAS.t1 v8 to manage the data. We used the thematic analysis guidelines provided by Braun and Clarke (2006) to analyze the data. This included immersing ourselves in the data, creating initial codes, developing a code-book, and developing themes and sub-themes. Both researchers played an active role in data analysis (Braun & Clarke, 2006). The analytic process involved in-depth discussion of the interviews. The themes that we report on in this article reflect how women with endometriosis in South Africa managed their fatigue.
Results
Participants provided detailed accounts of how they managed their fatigue. They learned these strategies on their own, using trial and error. Four themes emerged from the data. We named these themes as follows: (1) the personalized nature of fatigue-management strategies, (2) cognitive strategies, (3) physical strategies, and (4) maintenance of fatigue-management strategies. These themes and their sub-themes are described below.
The personalized nature of fatigue-management strategies
Participants reported that fatigue-management was highly individualized and that strategies that worked for one woman did not always work for others. Fatigue itself was considered an individual experience, meaning that women reported that the feeling of fatigue differed among them. Participants reported that they rarely discussed their fatigue with other women with endometriosis in the same way or to the same extent that they discussed their physical pain. Moreover, while pain-reduction strategies were frequently shared among women with endometriosis, fatigue-management strategies were not.
Many participants reported that they accepted their fatigue and did not think that it could be improved. For this reason, they did not consult their doctors about fatigue-management strategies. Instead, they sought general advice on fatigue-management from friends, family, and rarely from other women with endometriosis. Women stated that they tried several fatigue-management strategies with varying degrees of success and failure. Overall, women reported that they were desperate to alleviate their fatigue and tried most strategies suggested to them by others with very little success. Nolwande, a 28-year-old women with endometriosis, commented on the individualized nature of fatigue-management strategies in the following statement: No one knows what to do. No one. You see, everyone has their own theory on how to manage fatigue, everyone has their remedies and you try, you try remedies. You’re willing to listen because you want this fatigue to go away.
Participants reported that they were vigilant about their energy levels and how their bodies responded to fatigue-management strategies that they used. Women reported that they spent a considerable amount of time searching for effective and sustainable fatigue-management strategies.
Cognitive strategies
Participants reported that they relied on several cognitive strategies to manage their fatigue. We defined cognitive strategies as mental thoughts or approaches used to manage fatigue. In this study, participants reported two main cognitive strategies, namely: (1) pushing through and (2) planning, prioritizing, and pacing.
Pushing through
Many participants reported that they pushed through their fatigue. This meant that they forced themselves to both mentally and physically perform tasks despite low energy levels. Participants reported that they often pushed through their fatigue to accomplish daily tasks and those who were employed stated that they had to push through their fatigue at work. For example, Lauren, a 35-year-old married woman, described pushing through as follows: To explain, its like my body is tired but I will push my body to do things, get done with this . . .
Some women reported that they could not always push through their fatigue and that when work became overwhelming, they took breaks by taking a walk or isolated themselves in a quiet room, such as a bathroom. Participants did this to re-energize or increase their remaining energy. Most participants reported feeling frequently burnt out. For most participants who were employed at the time of the interview, the strategy to push through was not by choice. These women reported that they had to push through their fatigue because they had to make money to provide for themselves and their families. Patricia, a 36-year-old female participant, shared her reasons for pushing through in the following statement: You just sort of force yourself to, because you know you need to go to work to get your money, so you just force yourself through that.
Unemployed women stated that they too pushed through their fatigue to manage their household chores. Many participants reported that they struggled to sleep and attributed this to their bodies being overworked or overtired as a result of pushing through their fatigue.
Participants reported that pushing through became their preferred strategy for fatigue management. Many women reported that they used this strategy daily, without giving it much thought. However, participants also stated that they regretted pushing through, as it did not alleviate their fatigue, but rather prolonged it and in some cases left them completely depleted, forcing them to eventually rest.
Planning, prioritizing, and pacing
Participants reported that they frequently balanced their physical activity with periods of rest (i.e., pacing). Pacing was regarded as a useful strategy because women prioritized tasks and attempted them systematically. Pacing was practiced in several ways. Some participants reported that they napped immediately when they got home from work to increase energy for later when they needed to cook or perform other chores within their homes. Others reported that they focused their energy on a task to avoid repeating that task at a later time. For example, women stated that they often cooked enough food for 2 or 3 days to save energy in the future.
Participants also mentioned that it was important for them to choose which tasks they used their energy on and how they used their energy. For example, women reported making decisions on which events to attend and having to cancel ones that were not a priority. According to these women, this gave them control of their energy and to some extent, their lives. Women reported that they made sure that they used their energy wisely. Nicole, a 43-year-old mother of one, commented as follows: I think it’s given me a more of a sense of control so to speak. I feel a bit more in control of . . . . I don’t know, my fatigue levels if I can call it that because, like I said if I have to go to both events . . . So, I know that I have to choose either or, so it so because I have that awareness or that choice that I know I can make it that sort of helped.
It is also important to note that not every participant in this study reported that they were able to arrange some sort of flexibility with their employers to allow for pacing. This was distressing for participants, who reported other fatigue-management strategies.
Physical strategies
Physical strategies were conceptualized as practical strategies that women used to manage their fatigue. This included exercise, rest, and the use of supplements, food, and energy drinks.
Exercise
Women in this study reported that exercise helped them to manage their fatigue. They mentioned that consistent, light exercise helped boost their energy levels. Participants reported that they had more energy after they exercised than when they did not exercise at all. Participants emphasized that exercise did not have to be strenuous for it to be effective. Hermien, a 41-year-old women seeking treatment at the public hospital, said the following about exercise: I also do some like, you know, normal exercises a bit of crunches and all that stuff I do every day. But it really helps, it just boosts your energy levels it helps you too with the tiredness because I was tired all the time and now, I have more energy.
However, women reported that it was a struggle for them to exercise because of the pain and heavy bleeding associated with endometriosis. Participants stated that some of the exercises triggered endometriosis and pain from previous surgeries. Women in this study reported that they knew the importance and benefits of exercise in managing fatigue. However, some participants reported that they felt too tired to exercise at home or at the gym.
Rest
Participants reported that rest was a useful fatigue-management strategy. As previously mentioned, participants napped or sat down and rested when they were tired or in an attempt to increase energy before an activity. However, they stressed that sleep made them feel more tired. Furthermore, sleeping during the day made it difficult for them to sleep at night. Tasneem, a 39-year-old married participant, commented as follows: I don’t want to sleep during the day, especially late in the afternoon because then I can’t sleep at night. I would be dead tired at night, and I won’t be able to sleep. I’m awake sometimes till five o’ clock in the morning.
Supplements, food, and energy drinks
Women in this study reported using various supplements, food, and energy drinks to increase their energy levels. Participants mentioned using formulae specifically for energy or multivitamins. Coffee and diets free of processed food were also used to improve energy levels. Many women reported that they believed that supplements led to improved sleep for them, while others stated that they used the supplements, food, and energy drinks in addition to other fatigue-management strategies. These substances did not alleviate fatigue but provided short bursts of energy. In addition, participants reported that these substances were expensive.
In the following statement, Nolwandle mentions her reliance on energy drinks: If I don’t drink them then I can’t . . . you can’t live on energy drinks obviously. There was a time when I was on energy drinks all the time, every single day.
The maintenance of fatigue-management strategies
Participants reported that most of the management strategies that they used worked for a short period of time and that they struggled to consistently employ fatigue-management strategies, even when they were effective. Women stated that sometimes these strategies stopped working after a period of time. For instance, Tasneem describes this below: I’ve tried to use multivitamins, I’ve had it for a while and then it will take maybe up to two weeks for it to start working and it works for a while and then after that I just don’t feel the difference anymore.
Participants reported that some fatigue-management strategies, such as exercise, supplements, and energy drinks, were impractical, expensive, and not sustainable. These participants recognized that their fatigue was chronic, and this also influenced their choice of fatigue-management strategies.
Furthermore, the fatigue was associated with endometriosis and participants acknowledged that they needed to manage their endometriosis to manage their fatigue. Endometriosis-management strategies such as the “endometriosis diet” was reported as effective in improving levels of energy. This diet was described by participants as clean eating (i.e., eating whole foods in their natural state and avoiding processed foods). Yet again, this dietary intervention was reported as being costly by participants.
Discussion
Our aim was to describe how women with endometriosis managed their fatigue. Participants reported that both the experience of fatigue and management thereof was an individual experience that varied from woman to woman. Furthermore, they accepted that fatigue was part of their illness and although they reported using strategies to manage their fatigue, there was a sense that not much could be done. For this reason, they did not discuss their fatigue with their healthcare providers. Participants reported that they sought general advice from friends and family about fatigue-management and were open to trying most suggestions. In chronic illnesses studies, many patients reported either seeking advice from their health practitioners or managing the fatigue on their own by finding fatigue-management strategies to increase energy levels. For example, findings from a study conducted among 29 patients with rheumatoid arthritis revealed that patients did not explicitly ask for fatigue advice from health practitioners as they believed that fatigue was part of their illness and that they had to manage it themselves (Repping-Wuts et al., 2008). Similarly, Taiwanese women with breast cancer reported that they endured their fatigue because they thought it was inevitable since they had cancer and did not talk to their health practitioner or family about it (Tsai et al., 2010). These findings are congruent with our findings where women with endometriosis accepted the fatigue as part of their disease experience and did not seek advice from healthcare practitioners. Considering the high prevalence of fatigue among women with endometriosis (Ramin-Wright et al., 2018), it may be important for healthcare professionals to ask women with endometriosis whether they experience fatigue and explore the extent to which fatigue impacts their daily lives. Where possible, healthcare professionals may recommend fatigue-management strategies to patients. It must also be acknowledged that the fatigue may be related to other symptoms of endometriosis, such as pain. Therefore, reducing symptoms of endometriosis may reduce fatigue among women with endometriosis.
Participants reported that they tried several strategies to manage their fatigue and that fatigue management was a trial-and-error process. This is similar to findings from other studies where participants also reported that they used a trial and error approach (Repping-Wuts et al., 2008). We grouped coping strategies as either cognitive or physical. Cognitive strategies included pushing through, planning, prioritizing and pacing, whereas physical strategies included rest and the use of supplements, food and energy drinks. These are common strategies that have been used by patients with rheumatoid arthritis (Repping-Wuts et al., 2008), cancer (Cantarero-Villanueva et al., 2011; Ebede et al., 2017; Hagan et al., 2017; Mayor, 2017; Scott et al., 2011; Tsai et al., 2010), end stage kidney disease (Picariello et al., 2017) and fibromyalgia (Kengen Traska et al., 2012).
Social support did not emerge as a common fatigue-management strategy in the present study but was considered an important strategy among women with breast cancer (Tsai et al., 2010). Participants in another qualitative study exploring coping strategies among women with endometriosis in South Africa reported that participants relied on social support to manage symptoms such as pain and the impact of pain on daily functioning (Roomaney & Kagee, 2016). It was therefore surprising that social support was not also considered a fatigue-management strategy. However, women with endometriosis also reported feeling isolated and that they manage the disease on their own (Roomaney & Kagee, 2018). In addition, in a recent study among women with endometriosis in the UK, researchers found that participants’ social circles decreased due to the pervasive impact of their symptoms (Grogan et al., 2018). Moreover, women reported hiding their illness from others, concealed their pain and were incredibly considerate of others’ needs, thereby engaging in self-silencing. While the article referred to general symptoms of endometriosis, such as pain, these responses may also provide insight into why women in the current study shied away from seeking social support to manage fatigue (Grogan et al., 2018).
Despite the challenges or limitations brought by fatigue, some participants in this study still searched for fatigue-management strategies, indicating a need to reduce levels of fatigue. However, most women gave up trying to find a management strategy because most of the strategies they tried were ineffective, unsustainable, or costly. Reasons why women with endometriosis gave up their search for fatigue-management strategies could provide insight into the barriers to long-term management of fatigue.
Considering the cost implications associated with fatigue-management strategies, such as diets, it is important to provide patients with evidence-based fatigue-management interventions. It is therefore necessary to develop a fatigue-management intervention for women with endometriosis and determine its efficacy using a randomized controlled trial. Since participants also indicated that they stopped using their strategies over time, it is imperative that such interventions include information and support for women to maintain their fatigue-management strategies.
We gathered rich data from participants, but our study had three main limitations. The first is that we used a convenience sample. However, participants were from diverse backgrounds. Second, we only interviewed women who indicated that they were able to understand and converse in English and Afrikaans. This means that women who were not conversant in these languages were excluded, limiting the generalizability of the findings. Finally, we included data from a participant who reported that she was previously diagnosed with depression but did this as she provided important valuable information about her attempts to alleviate fatigue.
Conclusion
To the authors’ knowledge, this is the first qualitative study to explore fatigue among women with endometriosis. The findings provide insight into how fatigue is managed and the struggles to manage fatigue in this patient population. We found that the strategies employed by our sample were similar to those used by patients with other chronic conditions. There are currently no psychosocial interventions for fatigue management among women with endometriosis. The findings will be used to develop such an intervention.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by the National Research Foundation (NRF). The opinions and conclusions of this article are those of the authors and should not be attributed to the NRF.
