Endometriosis leading to frequent emergency department visits – women’s experiences and perspectives

Endometriosis leading to frequent emergency department visits – women’s experiences and perspectives | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Endometriosis leading to frequent emergency department visits – women’s experiences and perspectives Christine Roman Emanuel, Herborg Holter, Ida Nygren Hansson, Maria Forslund This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-3498890/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background Endometriosis is a common condition affecting 1–10% of all women. The condition is highly associated with pain. Most women with endometriosis are treated as elective outpatients, but these patients sometimes need to visit the emergency department. Aim The aim of this study was to increase knowledge about women with endometriosis repeatedly visiting the gynaecological emergency department (GED), to investigate patient experiences and expectations, and to explore unmet needs necessitating GED visits. Method Semi structured interviews were conducted with ten patients diagnosed with endometriosis who visited the GED at a tertiary university hospital four or more times within a 12-month period. Data were analysed by thematic content analysis. Result ‘Pain’ was identified as the master theme, which embodied the women’s overall experience, grouped into two main themes: ‘Living with endometriosis’ and ‘What patients need when seeking help at the GED,’ with six underlying themes. Several women described their visit to the GED as a ‘lottery,’ as they never knew what kind of treatment they would receive. Being listened to was most important for the women. Individualized care plans did not exist for most of the women in this study, although they repeatedly needed to visit the GED. Conclusion The women’s primary cause for seeking GED care was acute and unmanageable pain. A common feeling among the women was insecurity before the GED visit. To decrease this insecurity regarding assessment and treatment, a care plan for women is warranted. Our findings support the need for person-centered care and contribute to the limited research about women suffering from endometriosis and their experiences with GED. Endometriosis Gynecological emergency department Pain Person-centered care Responsibility Figures Figure 1 What does this paper contribute to the wider global clinical community? - Women with endometriosis primarily seek emergency care for unmanageable pain. - The interviewed women compared the visit to emergency care to a lottery: they did not know what kind of assessment or treatment they would receive at the GED. - A care plan could reduce stress and anxiety for patients when they seek emergency care. - Our findings support a shift towards person-centered care. Introduction Endometriosis is a common condition in women, the prevalence of which has been reported to range between 1% and 10%. [ 1 – 3 ]Endometriosis is characterized by the presence of endometrial cells outside the uterine cavity, which may cause irritation, inflammation, and scar tissue and result in symptoms such as dysmenorrhea, dyspareunia, and pelvic pain [ 1 , 4 , 5 ]. In many cases, the condition has a negative effect on women’s health-related quality of life and is associated with decreased emotional, physical, psychological, sexual, and social health [ 1 , 6 – 9 ]. Most women with endometriosis are treated as elective outpatients, but sometimes they need to visit the emergency department (ED). Studies have shown that the high patient numbers at the ED often make it challenging to provide high-quality care, which is manifested, for instance, by delayed analgesics, causing undue suffering in patients with severe pain[ 10 , 11 ] Although many different patients seek help at the ED, endometriosis is a common reason for seeking emergency care, especially at the gynaecological emergency department (GED). These patients often need help from a multidisciplinary team of health care professionals (HCPs). Despite this, little is known about patients with endometriosis from the ED perspective, and few studies have been conducted in the GED setting regardless of diagnosis. In addition, some patients, with or without endometriosis, repeatedly seek GED care, indicating unmet needs. To increase knowledge about patients with endometriosis with repeat GED use, we performed the present qualitative study. The aim of this study was to increase knowledge about women with endometriosis repeatedly visiting the GED and investigate patient experiences and expectations. Methods Design This qualitative interview study was performed at the GED of a university hospital in Sweden between October 2022 and January 2023. The GED has had approximately 15 000–16 000 visits per year, with an annual increase since 2017. Participants Patients were eligible to participate if they had visited the GED four or more times within a 12-month period and had been diagnosed with endometriosis, according to the medical records. The inclusion criteria were the ability to communicate in Swedish and having no severe psychiatric diagnoses. The patients were consecutively asked to participate based on the number of their visits to the GED during the previous year. All ten invited women agreed to participate and signed informed consent. The median age of the participants was 35 years (range 23–51 years). Within a 12-month period before the inclusion period, the median number of times they had visited the GED was eight (range four to 23). Details of their demographic characteristics are given in Table 1. Age, yrs. 35 (23–51) Age at start of symptoms, yrs. 13 (12–22) Age when diagnosis was verified, yrs. 27 (21–34) Time to verified diagnosis, yrs. 12 (2–21) Time since endometriosis diagnosis, yrs. 6 (1–18) Number of visits at the GED within 12 months 8 (4–23) Number of visits at the GED before the inclusion period 11 (3–12) Previous operations, n 1 (1–3) Working full-time, % 70% Highest education - high school 30% - university 60% Table 1 Characteristics of the included participants, given as median (range) or percentage. Data collection The participants were initially sent digital information about the study. Approximately 1 week later, they were contacted by phone by two of the authors (C.R.E. and I.N.H.). At this time, they were given the opportunity to ask questions about the study and decide if they wanted to participate. When they gave their approval, an interview was scheduled, and before the interview started, they gave their written informed consent. Out of the total number of interviews conducted, eight were face to face and took place at the hospital. Two were performed digitally, according to the participants’ choice. The median duration of the interviews was 44 (range 28–72) minutes, and the interviews needed to be rebooked a median of two (range one to seven) times. All interviews were audio recorded and transcribed verbatim by a skilled transcriber outside the research team. All identifying details were removed. The interviews followed a semi structured guide (see supplementary materials) focusing on experiences related to endometriosis and experiences related to visiting the GED. Questions included: How does endometriosis affect your life? Can you tell us about your experiences of health care in connection with endometriosis? How could endometriosis care be improved? The interview guide was created by the research group, a multidisciplinary team. Two of the authors (C.R.E. and I.N.H.) performed the interviews. One of the interviews was conducted by the two authors together to align the approach. Data analysis The interviews were analysed using thematic content analysis according to Braun and Clarke [12]. The data were coded using the data analysis software program NVivo (version 12). To familiarize themselves with the data, two of the authors (C.R.E. and H.H.) repeatedly read the transcribed data in its entirety, noting initial ideas. The entire data set was coded for interesting features. The coding was performed by the two authors (C.R.E. and H.H.) in duplicate, and differences in coding (which were only minor) were resolved by discussion to reach consensus. All codes were collated into preliminary themes; finally, after removing overlapping themes and merging similar ones, a master theme, two main themes, and six underlying themes were identified. A mind map was created to check that the themes covered the different codes. Thereafter, the coded data and all transcripts were reread to ensure that the themes were representative of the data, and the main themes and subthemes were refined and revised by all authors until consensus was reached. A detailed analysis was conducted by the two authors C.R.E. and H.H., but the whole research team worked together through the analytical process to find the essence in the data and ensure that no important themes were missing. Ethical considerations The study was approved by the Regional Ethical Review Board in Linköping, Sweden (2022-09-20, Dnr 2022-03306-01). All participants gave their written informed consent to participate in the study. Results The analysis identified one master theme, ‘Pain,’ which embodies the participants’ overall experience organized into two main themes: ‘Living with endometriosis’ and ‘What patients need when seeking help at the GED’, including six underlying themes which is illustrated in Figure 1 Living with endometriosis Well, I would certainly say that if I had not had endometriosis, I would indeed have... well but, like, lived. Because that’s what it feels like you’re not doing when you have endometriosis, that you’re not living, sort of. (1) Planning and cancelling Not knowing when the pain was going to set in or how it would set in limited the women’s lives. The pain they experienced was often exhausting, and since it was unpredictable, it limited their social life and their ability to plan exercise routines. Several of the women said that exercise played a vital role in their social interactions. Therefore, when they were unable to engage in physical activity, they lost not only the benefits of activity themselves but also an important component of their social life. The first years with the pain were extremely hard. I was exhausted. I couldn’t take short walks, nothing. So everything like that was affected. (4) Unpredictable pain affected the women’s choice of activities. One woman described that when she planned to go to a concert, she had to know whether the chairs were comfortable to be able to manage. Some of the women described gratitude towards their friends who showed great understanding when they cancelled at short notice. Others related that they had no, or only a very limited circle of, friends because of repeated cancelling and their limited ability to plan activities. I’ve often had to cancel things at the last minute or been unable to say yes to things because I’ve had pain or haven’t had the energy because I was tired. (6) All the women described that it was not only the pain but also the tiredness and fatigue that affected their lives as well as what they could plan and what they were able to do. Women with a family or partner often experienced feelings of disappointment towards themselves at not being able to be the mother or partner they wished to be, on account of the chronic pain and fatigue. Pain and fatigue had a significant impact on their emotional wellbeing, leading to feelings of frustration and guilt, especially when they were unable to make plans or when they had to cancel an arrangement. It can affect your relationships as well, as I mentioned, because you just can’t be bothered. You don’t have, like, the same strength and energy to give to other people around you, and not everyone is, like, understanding of what it means to live with pain, and especially endometriosis pain. (9) The lack of ability to plan and the frequent need to cancel at the last minute affected the women’s lives at all levels, including their education and working life. During their time in school, many women had been absent due to pain. The women believed that if they had received their diagnosis earlier, it would have given them better opportunities in school, as a better understanding of their condition could have helped in providing a context for their absences and enabled more support. If I had got the diagnosis earlier or..., but it’s more like my schooling would have been different if I had not had endometriosis. I’ve missed out on some of my schooling and at work as it is. (8) Most of the women were employed and prioritized their work. They tried to live their lives as normally as possible. They found it challenging to take sick leave, as it was important for them to continue their professional commitments. Understanding from their manager and colleagues was crucially important. … always a very, very guilty conscience when I call in sick or if I need to go home halfway through the day because I’m having pain … (6) The women’s condition limited their opportunities for career development. Planning for career development was risky when understanding the working environment was so important for the women to manage their working life. Some women described that if they had not had endometriosis, they would probably have planned a new job, but since everything worked well with the work environment and manager, they felt it was safer to stay. … there's safety, I have permission to adapt my job as I need to, which is truly great. (4) Coping with pain The knowledge and education the women received from HCPs about how the body reacts to pain was valuable to them. Education and knowledge about the pain helped the women cope with their pain on a daily basis. By learning how their body responded to pain, they were able to identify triggers and warning signs and develop strategies to manage their symptoms. This knowledge gave them a sense of control and empowered them to take an active role in their own health care. The most important thing for me was that we got to learn that coping with a daily life with pain is like coping with grief. Because so much of your life disappears … like, you can’t do what you’re accustomed to doing, when you have pain. (1) When the pain was moderate, the women used coping strategies such as painting, meditation, breathing practice, or going on walks or to a movie. Nonmedical treatments such as transcutaneous electric nerve stimulation (TENS), heating pads, and acupuncture were helpful for some of the women. They described these methods as crucial to stopping the pain from accelerating at an early stage. One woman expressed that the very acceptance of the condition and its effects on her body was a form of coping, making her come to terms with a life with endometriosis. Disbelief Before being diagnosed with endometriosis, many women had an overall experience of disbelief and mistrust. Not being understood and acknowledged in their pain had affected their self-esteem. ‘ No, but this is just mental … – it’s all in your head, there’s nothing wrong with you.’ (5) The women felt that they could not live up to their own and others’ expectations and that they constantly disappointed everyone around them. The social environment frequently dismissed the severity of the pain, considering ‘a little pain’ to be ‘normal.’ As a result, many women came to believe that the pain and fatigue were a natural part of life. I think in general that it’s going around with a feeling of constantly letting people down. That’s certainly the overall feeling. (7) When the diagnosis of endometriosis was verified, most of the women had felt relief. They felt that the diagnosis proved them right. However, they also felt sadness. It became easier for them to understand their health condition; pieces of their life fell into place, and feeling vindicated strengthened their self-esteem. Then, it was like things fell into place a little, that it’s not me who is imagining things, but rather that it’s not normal to feel like I have, or like I did. (8) What patients need when seeking help at the Gynecologic emergency department When you seek help, it’s at the GED. So then this fear clearly starts to grow within me, ‘Who is it that …?,’ ‘When should I go in?’ I try to drag myself in at the last minute and seek help, … until it’s intolerable, clearly. – Who wants to go there? No one. I go in and I’m thinking ‘I hope that it’s a good, understanding doctor … Kind, that’s all I’m asking for,’ one who treats me with respect and doesn’t sit with their back to me while typing on the computer. Just look me in the eye and talk to me like a fellow human being … (2) Pain management – to be listened to The primary reason for seeking care at the GED was to get help with pain management. Several of the women described how they waited a long time before seeking care at the GED. They wanted to manage the pain by themselves and did not want to seek help immediately, in the hope that the pain might lessen at home. As the pain intensified, they finally reached a point where they felt they had no other alternative than to seek help at the GED. No one thinks it’s fun to seek emergency help. It’s not something you do as a hobby, but you’ve tried all the aids you have at home before going in and … that it …, that you may not …, that they might not properly understand the strength it takes to venture out to get help and seek care. (8) The pain management depended on the HCP treating them. When the women perceived disbelief from the HCP, they usually received inferior pain management and felt diminished. Mistrust from the HCPs was described as more common before they had received their diagnosis, but it could also occur after the diagnosis, especially from some doctors. When the GED was overcrowded, the women noticed that the HCPs were busy and sometimes stressed and that it was difficult to be heard and receive adequate help. Under these circumstances, and when they were uncertain about when the doctor would be able to see them, pain, stress and anxiety emerged, even if the women tried to accept the long waiting time to obtain an assessment. So then I find that it’s a bit annoying that it’s different …, depending on which nurse and which doctor you get, whether I get pain relief right away or whether I have to wait several hours for the doctor. I’ve been there for more than 16 hours sometimes. (4) The women often described the care they received from nurses as positive, as they were met with respect, listened to, and acknowledged in their pain. When the doctors were busy, the nurses often tried to meet the patients’ needs and ease their pain. I get to lie down, I get double heating pads, I get pain relief, like, whatever is needed depending on how bad my pain is … and they take me seriously, or at least it feels like they’re taking me seriously and they …, they understand in another way, it feels like. They show respect in a very, very vulnerable situation. (6) It was important to be listened to and to have their story acknowledged by the HCPs. When an HCP acknowledged a woman’s needs, the woman felt less stressed and more secure. Trust and respect in communication were essential for the whole visit. … actually listening to what the patient is saying. Now I’m not saying that we patients are always right … – … but we do often have truly, truly good …, or I can say in any case that I know my body very, very well, and when I say that ‘something isn’t as it should be’ I appreciate it if someone listens to me then. (4) No Lottery The reason for waiting so long before seeking emergency help with pain management was also related to previous experiences at the GED. The care they received when seeking help was unpredictable. It could be good, if they were treated with care and respect; or it could be bad, when they were treated with ignorance and mistrust. The women felt that seeking care at the GED was similar to playing the lottery, and a lot depended on which doctor they met. Why is it different depending on which doctor is on call? Why does it differ so much? What is it that causes it to differ so much? (2) The nurses and midwives were described as stable and secure, but they could also vary. The feeling of playing the lottery made the women hesitate to seek emergency care and was one of the reasons they stayed at home for longer than they should. And then I’m always super tense about which doctor I’m going to get. I’m always truly worried about that. Because the process is sort of like a lottery. (10) Seeing different doctors who were responsible for different medical issues, both at the hospital and in primary care, resulted in varying levels of care. The women expressed a need for better communication between health care institutions to improve their overall care experience and minimize the feeling of being at the mercy of chance. Most women described that knowledge about endometriosis among HCPs and information about the condition generally had increased over the years; they stated that the national guidelines on endometriosis had contributed to increased knowledge. I was truly happy when we got national guidelines on endometriosis. It meant that you didn’t need to encounter doctors in the GED who would say, ‘I don’t know anything about your disease, would you tell me about it?’ (1) Limited knowledge about endometriosis among HCPs still existed and was one of the reasons why the women experienced playing the odds when seeking GED care. The women felt that more knowledge about endometriosis in general was needed, as well as implementation of care plans in accordance with the national guidelines; this might decrease the feeling of entering the lottery when seeking emergency care. Responsibility and a care plan Some of the women expressed a strong need to have someone take responsibility for their care, as they were seeing many different HCPs at many different health care institutions, which was exhausting. They felt that no one took the responsibility to develop a care plan for them. In the GED, I hear, ‘No, your doctor has to do that.’ Talking with the care center, they say, ‘No , we can’t do that.’ (1) The women expressed a strong wish for a care plan, both for themselves and for the HCPs. A well-developed care plan would provide a structured approach to their long-term treatment, encompassing medical, therapeutic, and supportive care. Not only would this provide women with a sense of security and confidence, but it would also lead to better communication and coordination among the HCPs involved in their care. Only one of the women had a care plan, and she expressed that it had importantly changed the care she was receiving. We have a care plan. It’s what has been the most decisive thing for me in terms of how I feel in my acute phases. (10) The other women said that having a care plan would help improve the care they received at the GED. Such a plan would include their special and nursing care needs based on their medical history and ongoing treatments. A care plan would reduce anxiety in a stressful situation when seeking GED care. Yeah, and it, it’s like… – it’s widely known that there are extreme variations in terms of how endometriosis patients are treated by the health care system. So there’s always some uncertainty as to whether or not you’ll get help when you go in. So a care plan would also end that uncertainty. (2) Discussion This qualitative study is, to our knowledge, the first to explore patient experiences and expectations in women with endometriosis in the ED setting. Our findings show that acute and unmanageable pain is the primary cause of women with endometriosis repeatedly seeking GED care. Living with endometriosis was described by all women as having a large impact on their daily life because of endometriosis pain as well as fatigue. According to the women in our study, multiple aspects of life were influenced by pain, including work or study and relations with friends and family. This caused social, academic, and work disruptions, which have also been described by others in the context of endometriosis [ 13 , 14 ]. In a qualitative study from New Zealand, where participants were recruited from endometriosis support groups, Huntington and Gilmour (2005) concluded that the lives of women were shaped by chronic pain and that women experienced limitations in different areas of life. A Swedish qualitative study in which women with endometriosis were recruited from a pain clinic described how the women limited, and they struggled because of sick leave and missed education [ 15 ]. An Australian study explored women’s experiences of the impact of endometriosis and potential differences across age groups and found that the areas most impacted were marital/sexual relationships, social life, and psychological/physical aspects, regardless of age [ 16 ]. Therefore, the consequences and experiences of living with endometriosis were similar to those found in the present study, even though we included only women with endometriosis who repeatedly sought care at the GED. Many of the women described heightened stress when visiting the GED. This was caused by uncertainty about which HCPs would see them and what level of knowledge these HCPs had regarding their condition. They were unsure whether they would be listened to at all and about what kind of pain treatment they would receive. The women described the process as being like playing the lottery; many felt that a proper care plan would minimize their worries when seeking GED care, as the assessment and treatment would then follow a clearly set out care plan. The women therefore described visits to the GED in terms of three interacting factors – the pain; stress about which HCPs would be treating them; and uncertainty regarding the pain treatment – all three having a large impact on the visit. As with the women included in this study, pain has been reported as a common cause for seeking emergency care among patients with other diagnoses [ 6 ]. The women in our study described that they sometimes waited too long before seeking emergency care, and one of the main reasons was the uncertainty they felt, as the GED experience felt like playing with chance. The waiting time both at home and at the GED made them feel more stressed and anxious, and often the pain would increase. Their emergency care encounter depended on the HCPs’ level of knowledge and attitude regarding their diagnosis. In cases where the women met with knowledge and felt acknowledged, they felt comfortable, safe, and less stressed. In contrast, when they saw HCPs with little knowledge regarding their diagnosis and were met with distrust, they felt diminished, unsafe, and stressed. Other studies have shown that both acute pain and intense pain can provoke an emotional reaction and that it is important to also assess the patient’s psychological status when treating pain. The waiting times associated with typical ED visits may contribute to patient anxiety and distress, impacting the overall pain experience [ 10 , 17 , 18 ]. The same impact on overall pain experience is likely to be true also at the GED due to unpredictable waiting times, and this corroborates the women’s narratives in our study. The majority of the women in this study suggested that a care plan would minimize their sense of entering the lottery every time they went to the GED. They felt that such a care plan would help reduce their anxiety and stress and possibly also lower the level of pain they experienced when deciding to visit GED. The care plan could include a pain management schedule consisting of both medical treatment and alternative analgesia treatment, nursing care advice, and strategies and exercises to ease the pain. Such a plan would make the GED visit more predictable and consequently less stressful. It would also decrease the feeling that the treatment is up to chance, as the individual HCP on call would be of less importance. The women also highlighted the importance of communication between primary care and the hospital; in this respect, the care plan could be the connection and improvement of care before and after GED visits. The European Society of Human Reproduction and Embryology (ESHRE) recommends drawing up individual care plans for women with endometriosis, as these standardize the treatment and make it predictable[ 1 , 19 ]. Studies in other patient groups, such as patients with heart failure, have shown the benefits of person-centered care (PCC), including the implementation of individual care plans. Importantly, there is a lack of knowledge in this area regarding patients with gynecological disorders, including endometriosis. The PPC approach helps patients feel more empowered in managing their illness and increases their confidence. Additionally, having a care plan can also improve respectful communication between HCPs and patients. Implementing individual care plans has been shown to be beneficial in improving patient outcomes and enhancing the overall health care experience [ 20 , 21 ]. Our study has shown the importance of patients feeling listened to and acknowledged by the HCP at the GED, which is in agreement with other studies investigating what is of great value for patients at the ED [ 18 ]. The experiences and expectations of the women participating in our study support the shift towards PCC. Person-centered care is based on the patient’s own story, conditions, and resources, where the patient’s obstacles are taken into account. A care plan is developed and evolves between the patient and the HCPs and is essential in PCC. The care plan is documented in the patient’s medical record. Person-centered care is regarded as a standard for providing good and safe health care [ 22 – 26 ]. It can minimize the patient’s emotional burden, pain, and stress and ensure that the patient’s experiences are valued and acknowledged. It aims to establish a partnership reflecting the expertise of both the HCPs and the patient with a care plan. This study focused on women’s experiences of living with endometriosis and their experience of frequently having to visit the GED. A qualitative method was used to identify and describe the women’s experiences. This method provided detailed data on essential aspects from the women, which could not have been captured through a quantitative survey. The study population of ten women may seem limited; however, the interviews generated a large amount of rich and informative data, which was sufficient to achieve both depth and width in the analysis. To establish trustworthiness in this study, all steps of the data collection and analysis process have been described, and quotations have been used to illustrate the themes and verify that the findings are grounded in the women’s narratives. To avoid overinterpretation, the research team analysed the data separately, discussed the analysis, and reached agreement in the interpretation. The results of qualitative research are not intended for generalization, but the results of this study might be transferable to other women with endometriosis in similar contexts. This study contributes to the limited knowledge about women with a diagnosis of endometriosis who frequently seek emergency care. To our knowledge, this is the first study with the specific aim of investigating their perspectives and experiences. The interviews provided rich material, where similar themes emerged between the patients. In addition to the new knowledge regarding women with endometriosis and repeat ED use, this study also adds valuable information on the GED setting, where very few studies have been performed. As little is known about patients’ experience in the GED setting, this study also contributes to the development of care in this field. The study also has some limitations. First, one of the interviewers was a registered nurse who, at the time of the interviews, was in a care relationship with some of the women. The patients were informed about the interviewers’ backgrounds, and being interviewed by an HCP could be seen as a power imbalance and affect the willingness to share experiences. On the other hand, the fact that one of the interviewers was known to the participants could also have favoured trust and openness during the interview. Our impression was that all women honestly shared their experiences during the interviews. Second, two of the interviews were performed digitally, and this could have had an effect on the interaction and sharing experiences. Third, the study did not include persons who did not speak Swedish. This limitation could affect the transferability of the findings, as the ED treats patients with different ethnic backgrounds. Finally, the interviews were conducted at one GED, and the experiences may differ at other clinics. Knowledge Gap This study provides new and unique perspectives on patients’ experiences and expectations in the context of endometriosis and repeat GED visits. Many women thought that a care plan would improve their care at the GED and decrease the insecurity they felt when they visited the GED. To our knowledge, this is the first study carried out in this specific setting, and our findings need to be explored further. The benefits of a care plan in the context of endometriosis should be studied in future research. In addition, we have identified a lack of studies regarding endometriosis and PCC, an additional important knowledge gap in this large patient group. To further develop care at the GED, investigating HCPs’ experiences and expectations of treating and caring for women with endometriosis at the GED is needed. As one of the interviewed women said, Thank you so much for taking the time and doing what you’re doing here because it’s so important and a step in the right direction. We must never be silenced again. For our own sake, and for the sake of our children and our grandchildren moving forward, like. (2) Conclusions and implications Women with endometriosis who repeatedly need to use the GED still mostly lack individualized care plans. Pain was the reason why the women we interviewed needed to visit the GED, but many of the women felt uncertainty before the visit, as they did not know what kind of treatment they would receive, and many expressed that the most important thing for them was to be listened to. This study contributes to the limited research on women’s experiences of living with endometriosis combined with experiences of GED visits. Our findings support the development of PCC. Relevance to clinical practice Our findings have identified several areas where the care of women with endometriosis can be improved. We have shown that multiple visits to the GED in women with endometriosis are due to pain, indicating that pain management should be prioritized. Many women experienced that a visit at the GED could be compared to entering a lottery, as they did not know what kind of treatment they would receive, and this was associated with negative feelings including uncertainty. A care plan could improve this problem, while simultaneously facilitating the assessment and treatment at the GED. Declarations Ethics approval and consent to participate The study was approved by the Regional Ethical Review Board in Linköping, Sweden (2022-09-20, Dnr 2022-03306-01). Consent of publication Not applicable Data Availability The datasets used and analysed during current study are available from the corresponding author on reasonable request Competing interests: The authors declare no competing interests Funding Open access funding provided by University of Gothenburg Authors contributions CRE, HH, INH and MF designed the study. CRE and INH conducted the interview. CRE and HH conducted the analysis, and the analyses was validated by HH, INH and MF. CRE prepared the first draft of this article, and all authors contributed important revisions. All authors have read and approved the final manuscript. Conflict an interest: None of the authors declares any conflicts of interest. Competing interests: The authors declare no competing interests Patient or Public Contribution: The study data is based on interviews with ten endometriosis patients. However, there was no funding to remunerate any of the women for participating. References Becker, C.M., et al., ESHRE guideline: endometriosis. Hum Reprod Open, 2022. 2022 (2): p. hoac009. Fuldeore, M.J. and A.M. Soliman, Prevalence and Symptomatic Burden of Diagnosed Endometriosis in the United States: National Estimates from a Cross-Sectional Survey of 59,411 Women. Gynecol Obstet Invest, 2017. 82 (5): p. 453-461. Sarria-Santamera, A., et al., Systematic Review and Meta-Analysis of Incidence and Prevalence of Endometriosis. Healthcare (Basel), 2020. 9 (1). Simoens, S., et al., The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Human Reproduction, 2012. 27 (5): p. 1292-1299. Viganò, P., et al., Endometriosis: epidemiology and aetiological factors. Best practice & research Clinical obstetrics & gynaecology, 2004. 18 (2): p. 177-200. Culley, L., et al., The social and psychological impact of endometriosis on women's lives: a critical narrative review. Human Reproduction Update, 2013. 19 (6): p. 625-639. Lagana, A.S., et al., Control of symptoms relapse after conservative surgery for endometriosis: advantages of using dienogest plus estradiol valerate. Journal of Endometriosis, 2013. 5 (Suppl 1): p. 20-21. Vetvicka, V., et al., Regulation of apoptotic pathways during endometriosis: from the molecular basis to the future perspectives. Archives of gynecology and obstetrics, 2016. 294 : p. 897-904. Huntington, A. and J.A. Gilmour, A life shaped by pain: women and endometriosis. J Clin Nurs, 2005. 14 (9): p. 1124-32. Kapoor, S., et al., Patients Presenting to the Emergency Department with Acute Pain: The Significant Role of Pain Catastrophizing and State Anxiety. Pain Med, 2016. 17 (6): p. 1069-78. Sayah, A., et al., Minimizing ED waiting times and improving patient flow and experience of care. Emergency medicine international, 2014. 2014 . Braun, V. and V. Clarke, Using thematic analysis in psychology. Qualitative research in psychology, 2006. 3 (2): p. 77-101. Facchin, F., et al., “Free butterflies will come out of these deep wounds”: A grounded theory of how endometriosis affects women’s psychological health. Journal of Health Psychology, 2018. 23 (4): p. 538-549. Gupta, J., et al., Life disruptions, symptoms suggestive of endometriosis, and anticipated stigma among college students in the united states. Women's Health Reports, 2021. 2 (1): p. 633-642. Hållstam, A., et al., Living with painful endometriosis–A struggle for coherence. A qualitative study. Sexual & Reproductive Healthcare, 2018. 17 : p. 97-102. Moradi, M., et al., Impact of endometriosis on women’s lives: a qualitative study. BMC Women's Health, 2014. 14 (1): p. 123. Sullivan, M.J., et al., Theoretical perspectives on the relation between catastrophizing and pain. Clin J Pain, 2001. 17 (1): p. 52-64. Milton, J., et al., Patients' perspectives on care, communication, and teamwork in the emergency department. Int Emerg Nurs, 2023. 66 : p. 101238. Coulter, A. and J. Oldham, Person-centred care: what is it and how do we get there? Future Hosp J, 2016. 3 (2): p. 114-116. Dudas, K., et al., Uncertainty in illness among patients with chronic heart failure is less in person-centred care than in usual care. European Journal of Cardiovascular Nursing, 2013. 12 (6): p. 521-528. Erebouni A, S.C., The meaning of person-centred care in the perioperative nursing context from the patient's perspective – an integrative review. Journal of Clinical Nursing (John Wiley & Sons, Inc.), 2017. 26 (17-18). Bull, C., et al., A systematic mixed studies review of patient experiences in the ED. Emerg Med J, 2021. 38 (8): p. 643-649. Ekman, I., et al., Person-centered care--ready for prime time. Eur J Cardiovasc Nurs, 2011. 10 (4): p. 248-51. Ekman, N., et al., Observable indicators of person-centred care: an interview study with patients, relatives and professionals. BMJ open, 2022. 12 (4): p. e059308. Grundström, H., et al., The double-edged experience of healthcare encounters among women with endometriosis: A qualitative study. J Clin Nurs, 2018. 27 (1-2): p. 205-211. Schreurs, A.M.F., et al., Towards more patient-centred endometriosis care: a cross-sectional survey using the ENDOCARE questionnaire. Hum Reprod Open, 2020. 2020 (3): p. hoaa029. Additional Declarations No competing interests reported. Supplementary Files Supplementeryinterviewguide.docx Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-3498890","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":245909448,"identity":"ed501290-7818-4fec-8502-ad216b1999ff","order_by":0,"name":"Christine Roman Emanuel","email":"data:image/png;base64,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","orcid":"","institution":"University of Gothenburg","correspondingAuthor":true,"prefix":"","firstName":"Christine","middleName":"Roman","lastName":"Emanuel","suffix":""},{"id":245909449,"identity":"6f94e746-085d-40a4-8a8c-5ccf0ab3b915","order_by":1,"name":"Herborg Holter","email":"","orcid":"","institution":"University of Gothenburg","correspondingAuthor":false,"prefix":"","firstName":"Herborg","middleName":"","lastName":"Holter","suffix":""},{"id":245909450,"identity":"ec07aca1-4ffc-4146-b8bd-172e8aff5674","order_by":2,"name":"Ida Nygren Hansson","email":"","orcid":"","institution":"Sahlgrenska University Hospital","correspondingAuthor":false,"prefix":"","firstName":"Ida","middleName":"Nygren","lastName":"Hansson","suffix":""},{"id":245909451,"identity":"53a918b5-02e0-417c-8ed9-88db37bc02a8","order_by":3,"name":"Maria Forslund","email":"","orcid":"","institution":"University of Gothenburg","correspondingAuthor":false,"prefix":"","firstName":"Maria","middleName":"","lastName":"Forslund","suffix":""}],"badges":[],"createdAt":"2023-10-27 11:29:13","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-3498890/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-3498890/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":46015091,"identity":"530680af-1d7d-4ec8-8f72-00399091bc39","added_by":"auto","created_at":"2023-11-07 15:17:53","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":45233,"visible":true,"origin":"","legend":"\u003cp\u003eOverview of the master team, main themes and underlying themes identified by thematic content analysis of the interviewed women. All themes are illustrated by quotations from the interviewed women and labelled with the interview number.\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-3498890/v1/cb320688a892422833ea55b4.png"},{"id":47088119,"identity":"aedddf0d-fb4a-443a-a825-c583d72ed9dc","added_by":"auto","created_at":"2023-11-26 06:22:26","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":402812,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-3498890/v1/bf5be3e5-52ce-4088-8955-26332d1103d4.pdf"},{"id":46015092,"identity":"cefe3814-c1d3-4538-a0a9-3acebf95dc07","added_by":"auto","created_at":"2023-11-07 15:17:53","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":22560,"visible":true,"origin":"","legend":"","description":"","filename":"Supplementeryinterviewguide.docx","url":"https://assets-eu.researchsquare.com/files/rs-3498890/v1/1a6dcfc5defb0f387509fd1d.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Endometriosis leading to frequent emergency department visits – women’s experiences and perspectives","fulltext":[{"header":"What does this paper contribute to the wider global clinical community?","content":"\u003cp\u003e- Women with endometriosis primarily seek emergency care for unmanageable pain.\u003c/p\u003e\n\u003cp\u003e- The interviewed women compared the visit to emergency care to a lottery: they did not know what kind of assessment or treatment they would receive at the GED.\u003c/p\u003e\n\u003cp\u003e- A care plan could reduce stress and anxiety for patients when they seek emergency care.\u003c/p\u003e\n\u003cp\u003e- Our findings support a shift towards person-centered care.\u003c/p\u003e"},{"header":"Introduction","content":"\u003cp\u003eEndometriosis is a common condition in women, the prevalence of which has been reported to range between 1% and 10%. [\u003cspan additionalcitationids=\"CR2\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]Endometriosis is characterized by the presence of endometrial cells outside the uterine cavity, which may cause irritation, inflammation, and scar tissue and result in symptoms such as dysmenorrhea, dyspareunia, and pelvic pain [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. In many cases, the condition has a negative effect on women\u0026rsquo;s health-related quality of life and is associated with decreased emotional, physical, psychological, sexual, and social health [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan additionalcitationids=\"CR7 CR8\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eMost women with endometriosis are treated as elective outpatients, but sometimes they need to visit the emergency department (ED). Studies have shown that the high patient numbers at the ED often make it challenging to provide high-quality care, which is manifested, for instance, by delayed analgesics, causing undue suffering in patients with severe pain[\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e] Although many different patients seek help at the ED, endometriosis is a common reason for seeking emergency care, especially at the gynaecological emergency department (GED). These patients often need help from a multidisciplinary team of health care professionals (HCPs). Despite this, little is known about patients with endometriosis from the ED perspective, and few studies have been conducted in the GED setting regardless of diagnosis. In addition, some patients, with or without endometriosis, repeatedly seek GED care, indicating unmet needs.\u003c/p\u003e \u003cp\u003eTo increase knowledge about patients with endometriosis with repeat GED use, we performed the present qualitative study. The aim of this study was to increase knowledge about women with endometriosis repeatedly visiting the GED and investigate patient experiences and expectations.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cem\u003eDesign\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis qualitative interview study was performed at the GED of a university hospital in Sweden between October 2022 and January 2023. The GED has had approximately 15 000\u0026ndash;16 000 visits per year, with an annual increase since 2017.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eParticipants\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePatients were eligible to participate if they had visited the GED four or more times within a 12-month period and had been diagnosed with endometriosis, according to the medical records.\u0026nbsp;The inclusion\u0026nbsp;criteria were\u0026nbsp;the\u0026nbsp;ability to communicate in Swedish and having no severe psychiatric diagnoses.\u003c/p\u003e\n\u003cp\u003eThe patients were consecutively asked to participate based on the number of their visits to the GED during the previous year. All ten invited women agreed to participate and signed informed consent. The median age of the participants was 35 years (range 23\u0026ndash;51 years). Within a 12-month period before the inclusion period, the median number of times they had visited the GED was eight (range four to 23). Details of their demographic characteristics are given in Table 1.\u0026nbsp;\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" align=\"\" width=\"639\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"68.54460093896714%\" valign=\"top\"\u003e\n \u003cp\u003eAge, yrs.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"31.455399061032864%\" valign=\"top\"\u003e\n \u003cp\u003e35 (23\u0026ndash;51)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"68.54460093896714%\" valign=\"top\"\u003e\n \u003cp\u003eAge at start of symptoms, yrs.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"31.455399061032864%\" valign=\"top\"\u003e\n \u003cp\u003e13 (12\u0026ndash;22)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"68.54460093896714%\" valign=\"top\"\u003e\n \u003cp\u003eAge when diagnosis was verified, yrs.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"31.455399061032864%\" valign=\"top\"\u003e\n \u003cp\u003e27 (21\u0026ndash;34)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"68.54460093896714%\" valign=\"top\"\u003e\n \u003cp\u003eTime to verified diagnosis, yrs.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"31.455399061032864%\" valign=\"top\"\u003e\n \u003cp\u003e12 (2\u0026ndash;21)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"68.54460093896714%\" valign=\"top\"\u003e\n \u003cp\u003eTime since endometriosis diagnosis, yrs.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"31.455399061032864%\" valign=\"top\"\u003e\n \u003cp\u003e6 (1\u0026ndash;18)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"68.54460093896714%\" valign=\"top\"\u003e\n \u003cp\u003eNumber of visits at the GED within 12 months\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"31.455399061032864%\" valign=\"top\"\u003e\n \u003cp\u003e8 (4\u0026ndash;23)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"68.54460093896714%\" valign=\"top\"\u003e\n \u003cp\u003eNumber of visits at the GED before the inclusion period\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"31.455399061032864%\" valign=\"top\"\u003e\n \u003cp\u003e11 (3\u0026ndash;12)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"68.54460093896714%\" valign=\"top\"\u003e\n \u003cp\u003ePrevious operations, n\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"31.455399061032864%\" valign=\"top\"\u003e\n \u003cp\u003e1 (1\u0026ndash;3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"68.54460093896714%\" valign=\"top\"\u003e\n \u003cp\u003eWorking full-time, %\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"31.455399061032864%\" valign=\"top\"\u003e\n \u003cp\u003e70%\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"68.54460093896714%\" valign=\"top\"\u003e\n \u003cp\u003eHighest education \u0026nbsp; - high school\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"31.455399061032864%\" valign=\"top\"\u003e\n \u003cp\u003e30%\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"68.54460093896714%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; - university\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"31.455399061032864%\" valign=\"top\"\u003e\n \u003cp\u003e60%\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eTable 1 Characteristics of the included participants, given as median (range) or percentage.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eData collection\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe participants were initially sent digital information about the study.\u0026nbsp;Approximately\u0026nbsp;1 week later, they were contacted by phone by two of the authors (C.R.E. and I.N.H.). At this time, they were given the opportunity to ask questions about the study and decide if they wanted to participate. When they gave their approval, an interview was scheduled, and before the interview started, they gave their written informed consent. Out of the total number of interviews conducted, eight were face to face and took place at the hospital. Two were performed digitally, according to the participants\u0026rsquo; choice. The median duration of the interviews was 44 (range 28\u0026ndash;72) minutes,\u0026nbsp;and the interviews needed to be rebooked a median of two (range one to seven) times.\u003c/p\u003e\n\u003cp\u003eAll interviews were audio recorded and transcribed verbatim by a skilled transcriber outside the research team. All identifying details were removed.\u003c/p\u003e\n\u003cp\u003eThe interviews followed a semi structured guide (see supplementary materials) focusing on experiences related to endometriosis and experiences related to visiting the GED. Questions included: How does endometriosis affect your life? Can you tell us about your experiences of health care in connection with endometriosis? How could endometriosis care be improved?\u003c/p\u003e\n\u003cp\u003eThe interview guide was created by the research group, a\u0026nbsp;multidisciplinary\u0026nbsp;team. Two of the authors (C.R.E. and I.N.H.) performed the interviews. One of the interviews was conducted by the two authors together to align the approach.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eData analysis\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe interviews were analysed using thematic content analysis according to Braun and Clarke\u0026nbsp;[12]. The data\u0026nbsp;were\u0026nbsp;coded using the data analysis software program NVivo (version 12). To familiarize themselves with the data, two of the authors (C.R.E. and H.H.) repeatedly read the transcribed data in its entirety, noting initial ideas. The entire data set was coded for interesting features. The coding was performed by the two authors (C.R.E. and H.H.) in duplicate, and differences in coding (which were only minor) were resolved by discussion to reach consensus. All codes were collated into preliminary themes; finally, after removing overlapping themes and merging similar ones, a master theme, two main themes, and six underlying themes were identified. A mind map was created to check that the themes covered the different codes.\u003c/p\u003e\n\u003cp\u003eThereafter, the coded data and all transcripts were reread to ensure that the themes were representative of the data, and the main themes and subthemes were refined and revised by all authors until consensus was reached. A detailed analysis was conducted by the two authors C.R.E. and H.H., but the whole research team worked together through the analytical process to find the essence in the data and\u0026nbsp;ensure\u0026nbsp;that no important themes were missing.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eEthical considerations\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe study was approved by the Regional Ethical Review Board in Link\u0026ouml;ping, Sweden (2022-09-20, Dnr 2022-03306-01). All participants gave their written informed consent to participate in the study.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eThe analysis identified one master theme, \u0026lsquo;Pain,\u0026rsquo; which embodies the participants\u0026rsquo; overall experience organized into two main themes: \u0026lsquo;Living with endometriosis\u0026rsquo; and \u0026lsquo;What patients need when seeking help at the GED\u0026rsquo;, including six underlying themes which is illustrated in Figure 1\u0026nbsp;\u003c/p\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eLiving with endometriosis\u003c/h2\u003e \u003cp\u003e \u003cem\u003eWell, I would certainly say that if I had not had endometriosis, I would indeed have... well but, like, lived. Because that\u0026rsquo;s what it feels like you\u0026rsquo;re not doing when you have endometriosis, that you\u0026rsquo;re not living, sort of. (1)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003ePlanning and cancelling\u003c/h2\u003e \u003cp\u003eNot knowing when the pain was going to set in or how it would set in limited the women\u0026rsquo;s lives. The pain they experienced was often exhausting, and since it was unpredictable, it limited their social life and their ability to plan exercise routines. Several of the women said that exercise played a vital role in their social interactions. Therefore, when they were unable to engage in physical activity, they lost not only the benefits of activity themselves but also an important component of their social life.\u003c/p\u003e \u003cp\u003e \u003cem\u003eThe first years with the pain were extremely hard. I was exhausted. I couldn\u0026rsquo;t take short walks, nothing. So everything like that was affected. (4)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eUnpredictable pain affected the women\u0026rsquo;s choice of activities. One woman described that when she planned to go to a concert, she had to know whether the chairs were comfortable to be able to manage. Some of the women described gratitude towards their friends who showed great understanding when they cancelled at short notice. Others related that they had no, or only a very limited circle of, friends because of repeated cancelling and their limited ability to plan activities.\u003c/p\u003e \u003cp\u003e \u003cem\u003eI\u0026rsquo;ve often had to cancel things at the last minute or been unable to say yes to things because I\u0026rsquo;ve had pain or haven\u0026rsquo;t had the energy because I was tired. (6)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eAll the women described that it was not only the pain but also the tiredness and fatigue that affected their lives as well as what they could plan and what they were able to do. Women with a family or partner often experienced feelings of disappointment towards themselves at not being able to be the mother or partner they wished to be, on account of the chronic pain and fatigue. Pain and fatigue had a significant impact on their emotional wellbeing, leading to feelings of frustration and guilt, especially when they were unable to make plans or when they had to cancel an arrangement.\u003c/p\u003e \u003cp\u003e \u003cem\u003eIt can affect your relationships as well, as I mentioned, because you just can\u0026rsquo;t be bothered. You don\u0026rsquo;t have, like, the same strength and energy to give to other people around you, and not everyone is, like, understanding of what it means to live with pain, and especially endometriosis pain. (9)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe lack of ability to plan and the frequent need to cancel at the last minute affected the women\u0026rsquo;s lives at all levels, including their education and working life. During their time in school, many women had been absent due to pain. The women believed that if they had received their diagnosis earlier, it would have given them better opportunities in school, as a better understanding of their condition could have helped in providing a context for their absences and enabled more support.\u003c/p\u003e \u003cp\u003e \u003cem\u003eIf I had got the diagnosis earlier or..., but it\u0026rsquo;s more like my schooling would have been different if I had not had endometriosis. I\u0026rsquo;ve missed out on some of my schooling and at work as it is. (8)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eMost of the women were employed and prioritized their work. They tried to live their lives as normally as possible. They found it challenging to take sick leave, as it was important for them to continue their professional commitments. Understanding from their manager and colleagues was crucially important.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026hellip; always a very, very guilty conscience when I call in sick or if I need to go home halfway through the day because I\u0026rsquo;m having pain \u0026hellip; (6)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe women\u0026rsquo;s condition limited their opportunities for career development. Planning for career development was risky when understanding the working environment was so important for the women to manage their working life. Some women described that if they had not had endometriosis, they would probably have planned a new job, but since everything worked well with the work environment and manager, they felt it was safer to stay.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026hellip; there's safety, I have permission to adapt my job as I need to, which is truly great. (4)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eCoping with pain\u003c/h2\u003e \u003cp\u003eThe knowledge and education the women received from HCPs about how the body reacts to pain was valuable to them. Education and knowledge about the pain helped the women cope with their pain on a daily basis. By learning how their body responded to pain, they were able to identify triggers and warning signs and develop strategies to manage their symptoms. This knowledge gave them a sense of control and empowered them to take an active role in their own health care.\u003c/p\u003e \u003cp\u003e \u003cem\u003eThe most important thing for me was that we got to learn that coping with a daily life with pain is like coping with grief. Because so much of your life disappears \u0026hellip; like, you can\u0026rsquo;t do what you\u0026rsquo;re accustomed to doing, when you have pain. (1)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eWhen the pain was moderate, the women used coping strategies such as painting, meditation, breathing practice, or going on walks or to a movie. Nonmedical treatments such as transcutaneous electric nerve stimulation (TENS), heating pads, and acupuncture were helpful for some of the women. They described these methods as crucial to stopping the pain from accelerating at an early stage. One woman expressed that the very acceptance of the condition and its effects on her body was a form of coping, making her come to terms with a life with endometriosis.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eDisbelief\u003c/h2\u003e \u003cp\u003eBefore being diagnosed with endometriosis, many women had an overall experience of disbelief and mistrust. Not being understood and acknowledged in their pain had affected their self-esteem.\u003c/p\u003e \u003cp\u003e\u0026lsquo;\u003cem\u003eNo, but this is just mental \u0026hellip; \u0026ndash; it\u0026rsquo;s all in your head, there\u0026rsquo;s nothing wrong with you.\u0026rsquo; (5)\u003c/em\u003e\u003c/p\u003e \u003cp\u003eThe women felt that they could not live up to their own and others\u0026rsquo; expectations and that they constantly disappointed everyone around them. The social environment frequently dismissed the severity of the pain, considering \u0026lsquo;a little pain\u0026rsquo; to be \u0026lsquo;normal.\u0026rsquo; As a result, many women came to believe that the pain and fatigue were a natural part of life.\u003c/p\u003e \u003cp\u003e \u003cem\u003eI think in general that it\u0026rsquo;s going around with a feeling of constantly letting people down. That\u0026rsquo;s certainly the overall feeling. (7)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eWhen the diagnosis of endometriosis was verified, most of the women had felt relief. They felt that the diagnosis proved them right. However, they also felt sadness. It became easier for them to understand their health condition; pieces of their life fell into place, and feeling vindicated strengthened their self-esteem.\u003c/p\u003e \u003cp\u003e \u003cem\u003eThen, it was like things fell into place a little, that it\u0026rsquo;s not me who is imagining things, but rather that it\u0026rsquo;s not normal to feel like I have, or like I did. (8)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eWhat patients need when seeking help at the Gynecologic emergency department\u003c/h2\u003e \u003cp\u003e \u003cem\u003eWhen you seek help, it\u0026rsquo;s at the GED. So then this fear clearly starts to grow within me, \u0026lsquo;Who is it that \u0026hellip;?,\u0026rsquo; \u0026lsquo;When should I go in?\u0026rsquo; I try to drag myself in at the last minute and seek help, \u0026hellip; until it\u0026rsquo;s intolerable, clearly. \u0026ndash; Who wants to go there? No one. I go in and I\u0026rsquo;m thinking \u0026lsquo;I hope that it\u0026rsquo;s a good, understanding doctor \u0026hellip; Kind, that\u0026rsquo;s all I\u0026rsquo;m asking for,\u0026rsquo; one who treats me with respect and doesn\u0026rsquo;t sit with their back to me while typing on the computer. Just look me in the eye and talk to me like a fellow human being \u0026hellip; (2)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003ePain management \u0026ndash; to be listened to\u003c/h2\u003e \u003cp\u003eThe primary reason for seeking care at the GED was to get help with pain management. Several of the women described how they waited a long time before seeking care at the GED. They wanted to manage the pain by themselves and did not want to seek help immediately, in the hope that the pain might lessen at home. As the pain intensified, they finally reached a point where they felt they had no other alternative than to seek help at the GED.\u003c/p\u003e \u003cp\u003e \u003cem\u003eNo one thinks it\u0026rsquo;s fun to seek emergency help. It\u0026rsquo;s not something you do as a hobby, but you\u0026rsquo;ve tried all the aids you have at home before going in and \u0026hellip; that it \u0026hellip;, that you may not \u0026hellip;, that they might not properly understand the strength it takes to venture out to get help and seek care. (8)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe pain management depended on the HCP treating them. When the women perceived disbelief from the HCP, they usually received inferior pain management and felt diminished. Mistrust from the HCPs was described as more common before they had received their diagnosis, but it could also occur after the diagnosis, especially from some doctors.\u003c/p\u003e \u003cp\u003eWhen the GED was overcrowded, the women noticed that the HCPs were busy and sometimes stressed and that it was difficult to be heard and receive adequate help. Under these circumstances, and when they were uncertain about when the doctor would be able to see them, pain, stress and anxiety emerged, even if the women tried to accept the long waiting time to obtain an assessment.\u003c/p\u003e \u003cp\u003e \u003cem\u003eSo then I find that it\u0026rsquo;s a bit annoying that it\u0026rsquo;s different \u0026hellip;, depending on which nurse and which doctor you get, whether I get pain relief right away or whether I have to wait several hours for the doctor. I\u0026rsquo;ve been there for more than 16 hours sometimes. (4)\u003c/em\u003e \u003c/p\u003e \u003cp\u003e The women often described the care they received from nurses as positive, as they were met with respect, listened to, and acknowledged in their pain. When the doctors were busy, the nurses often tried to meet the patients\u0026rsquo; needs and ease their pain.\u003c/p\u003e \u003cp\u003e \u003cem\u003eI get to lie down, I get double heating pads, I get pain relief, like, whatever is needed depending on how bad my pain is \u0026hellip; and they take me seriously, or at least it feels like they\u0026rsquo;re taking me seriously and they \u0026hellip;, they understand in another way, it feels like. They show respect in a very, very vulnerable situation. (6)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eIt was important to be listened to and to have their story acknowledged by the HCPs. When an HCP acknowledged a woman\u0026rsquo;s needs, the woman felt less stressed and more secure. Trust and respect in communication were essential for the whole visit.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026hellip; actually listening to what the patient is saying. Now I\u0026rsquo;m not saying that we patients are always right \u0026hellip; \u0026ndash; \u0026hellip; but we do often have truly, truly good \u0026hellip;, or I can say in any case that I know my body very, very well, and when I say that \u0026lsquo;something isn\u0026rsquo;t as it should be\u0026rsquo; I appreciate it if someone listens to me then. (4)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eNo Lottery\u003c/h2\u003e \u003cp\u003eThe reason for waiting so long before seeking emergency help with pain management was also related to previous experiences at the GED. The care they received when seeking help was unpredictable. It could be good, if they were treated with care and respect; or it could be bad, when they were treated with ignorance and mistrust.\u003c/p\u003e \u003cp\u003eThe women felt that seeking care at the GED was similar to playing the lottery, and a lot depended on which doctor they met.\u003c/p\u003e \u003cp\u003e \u003cem\u003eWhy is it different depending on which doctor is on call? Why does it differ so much? What is it that causes it to differ so much? (2)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe nurses and midwives were described as stable and secure, but they could also vary. The feeling of playing the lottery made the women hesitate to seek emergency care and was one of the reasons they stayed at home for longer than they should.\u003c/p\u003e \u003cp\u003e \u003cem\u003eAnd then I\u0026rsquo;m always super tense about which doctor I\u0026rsquo;m going to get. I\u0026rsquo;m always truly worried about that. Because the process is sort of like a lottery. (10)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eSeeing different doctors who were responsible for different medical issues, both at the hospital and in primary care, resulted in varying levels of care. The women expressed a need for better communication between health care institutions to improve their overall care experience and minimize the feeling of being at the mercy of chance.\u003c/p\u003e \u003cp\u003e Most women described that knowledge about endometriosis among HCPs and information about the condition generally had increased over the years; they stated that the national guidelines on endometriosis had contributed to increased knowledge.\u003c/p\u003e \u003cp\u003e\u003cem\u003e I was truly happy when we got national guidelines on endometriosis. It meant that you didn\u0026rsquo;t need to encounter doctors in the GED who would say, \u0026lsquo;I don\u0026rsquo;t know anything about your disease, would you tell me about it?\u0026rsquo; (1)\u003c/em\u003e\u003c/p\u003e \u003cp\u003eLimited knowledge about endometriosis among HCPs still existed and was one of the reasons why the women experienced playing the odds when seeking GED care. The women felt that more knowledge about endometriosis in general was needed, as well as implementation of care plans in accordance with the national guidelines; this might decrease the feeling of entering the lottery when seeking emergency care.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eResponsibility and a care plan\u003c/h2\u003e \u003cp\u003eSome of the women expressed a strong need to have someone take responsibility for their care, as they were seeing many different HCPs at many different health care institutions, which was exhausting. They felt that no one took the responsibility to develop a care plan for them.\u003c/p\u003e \u003cp\u003e \u003cem\u003eIn the GED, I hear, \u0026lsquo;No, your doctor has to do that.\u0026rsquo; Talking with the care center, they say, \u0026lsquo;No\u003c/em\u003e, we \u003cem\u003ecan\u0026rsquo;t do that.\u0026rsquo; (1)\u003c/em\u003e\u003c/p\u003e \u003cp\u003eThe women expressed a strong wish for a care plan, both for themselves and for the HCPs. A well-developed care plan would provide a structured approach to their long-term treatment, encompassing medical, therapeutic, and supportive care. Not only would this provide women with a sense of security and confidence, but it would also lead to better communication and coordination among the HCPs involved in their care.\u003c/p\u003e \u003cp\u003eOnly one of the women had a care plan, and she expressed that it had importantly changed the care she was receiving.\u003c/p\u003e \u003cp\u003e \u003cem\u003eWe have a care plan. It\u0026rsquo;s what has been the most decisive thing for me in terms of how I feel in my acute phases. (10)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe other women said that having a care plan would help improve the care they received at the GED. Such a plan would include their special and nursing care needs based on their medical history and ongoing treatments. A care plan would reduce anxiety in a stressful situation when seeking GED care.\u003c/p\u003e \u003cp\u003e \u003cem\u003eYeah, and it, it\u0026rsquo;s like\u0026hellip; \u0026ndash; it\u0026rsquo;s widely known that there are extreme variations in terms of how endometriosis patients are treated by the health care system. So there\u0026rsquo;s always some uncertainty as to whether or not you\u0026rsquo;ll get help when you go in. So a care plan would also end that uncertainty. (2)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis qualitative study is, to our knowledge, the first to explore patient experiences and expectations in women with endometriosis in the ED setting. Our findings show that acute and unmanageable pain is the primary cause of women with endometriosis repeatedly seeking GED care. Living with endometriosis was described by all women as having a large impact on their daily life because of endometriosis pain as well as fatigue.\u003c/p\u003e \u003cp\u003eAccording to the women in our study, multiple aspects of life were influenced by pain, including work or study and relations with friends and family. This caused social, academic, and work disruptions, which have also been described by others in the context of endometriosis [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. In a qualitative study from New Zealand, where participants were recruited from endometriosis support groups, Huntington and Gilmour (2005) concluded that the lives of women were shaped by chronic pain and that women experienced limitations in different areas of life. A Swedish qualitative study in which women with endometriosis were recruited from a pain clinic described how the women limited, and they struggled because of sick leave and missed education [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. An Australian study explored women’s experiences of the impact of endometriosis and potential differences across age groups and found that the areas most impacted were marital/sexual relationships, social life, and psychological/physical aspects, regardless of age [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. Therefore, the consequences and experiences of living with endometriosis were similar to those found in the present study, even though we included only women with endometriosis who repeatedly sought care at the GED.\u003c/p\u003e \u003cp\u003eMany of the women described heightened stress when visiting the GED. This was caused by uncertainty about which HCPs would see them and what level of knowledge these HCPs had regarding their condition. They were unsure whether they would be listened to at all and about what kind of pain treatment they would receive. The women described the process as being like playing the lottery; many felt that a proper care plan would minimize their worries when seeking GED care, as the assessment and treatment would then follow a clearly set out care plan.\u003c/p\u003e \u003cp\u003eThe women therefore described visits to the GED in terms of three interacting factors – the pain; stress about which HCPs would be treating them; and uncertainty regarding the pain treatment – all three having a large impact on the visit.\u003c/p\u003e \u003cp\u003eAs with the women included in this study, pain has been reported as a common cause for seeking emergency care among patients with other diagnoses [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. The women in our study described that they sometimes waited too long before seeking emergency care, and one of the main reasons was the uncertainty they felt, as the GED experience felt like playing with chance. The waiting time both at home and at the GED made them feel more stressed and anxious, and often the pain would increase.\u003c/p\u003e \u003cp\u003eTheir emergency care encounter depended on the HCPs’ level of knowledge and attitude regarding their diagnosis. In cases where the women met with knowledge and felt acknowledged, they felt comfortable, safe, and less stressed. In contrast, when they saw HCPs with little knowledge regarding their diagnosis and were met with distrust, they felt diminished, unsafe, and stressed. Other studies have shown that both \u003cem\u003eacute pain\u003c/em\u003e and \u003cem\u003eintense pain\u003c/em\u003e can provoke an emotional reaction and that it is important to also assess the patient’s psychological status when treating pain. The waiting times associated with typical ED visits may contribute to patient anxiety and distress, impacting the overall pain experience [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. The same impact on overall pain experience is likely to be true also at the GED due to unpredictable waiting times, and this corroborates the women’s narratives in our study.\u003c/p\u003e \u003cp\u003eThe majority of the women in this study suggested that a care plan would minimize their sense of entering the lottery every time they went to the GED. They felt that such a care plan would help reduce their anxiety and stress and possibly also lower the level of pain they experienced when deciding to visit GED. The care plan could include a pain management schedule consisting of both medical treatment and alternative analgesia treatment, nursing care advice, and strategies and exercises to ease the pain. Such a plan would make the GED visit more predictable and consequently less stressful. It would also decrease the feeling that the treatment is up to chance, as the individual HCP on call would be of less importance. The women also highlighted the importance of communication between primary care and the hospital; in this respect, the care plan could be the connection and improvement of care before and after GED visits.\u003c/p\u003e \u003cp\u003eThe European Society of Human Reproduction and Embryology (ESHRE) recommends drawing up individual care plans for women with endometriosis, as these standardize the treatment and make it predictable[\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. Studies in other patient groups, such as patients with heart failure, have shown the benefits of person-centered care (PCC), including the implementation of individual care plans. Importantly, there is a lack of knowledge in this area regarding patients with gynecological disorders, including endometriosis. The PPC approach helps patients feel more empowered in managing their illness and increases their confidence. Additionally, having a care plan can also improve respectful communication between HCPs and patients. Implementing individual care plans has been shown to be beneficial in improving patient outcomes and enhancing the overall health care experience [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eOur study has shown the importance of patients feeling listened to and acknowledged by the HCP at the GED, which is in agreement with other studies investigating what is of great value for patients at the ED [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. The experiences and expectations of the women participating in our study support the shift towards PCC. Person-centered care is based on the patient’s own story, conditions, and resources, where the patient’s obstacles are taken into account. A care plan is developed and evolves between the patient and the HCPs and is essential in PCC. The care plan is documented in the patient’s medical record. Person-centered care is regarded as a standard for providing good and safe health care [\u003cspan additionalcitationids=\"CR23 CR24 CR25\" citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e–\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. It can minimize the patient’s emotional burden, pain, and stress and ensure that the patient’s experiences are valued and acknowledged. It aims to establish a partnership reflecting the expertise of both the HCPs and the patient with a care plan.\u003c/p\u003e \u003cp\u003eThis study focused on women’s experiences of living with endometriosis and their experience of frequently having to visit the GED. A qualitative method was used to identify and describe the women’s experiences. This method provided detailed data on essential aspects from the women, which could not have been captured through a quantitative survey. The study population of ten women may seem limited; however, the interviews generated a large amount of rich and informative data, which was sufficient to achieve both depth and width in the analysis.\u003c/p\u003e \u003cp\u003eTo establish trustworthiness in this study, all steps of the data collection and analysis process have been described, and quotations have been used to illustrate the themes and verify that the findings are grounded in the women’s narratives. To avoid overinterpretation, the research team analysed the data separately, discussed the analysis, and reached agreement in the interpretation. The results of qualitative research are not intended for generalization, but the results of this study might be transferable to other women with endometriosis in similar contexts.\u003c/p\u003e \u003cp\u003eThis study contributes to the limited knowledge about women with a diagnosis of endometriosis who frequently seek emergency care. To our knowledge, this is the first study with the specific aim of investigating their perspectives and experiences. The interviews provided rich material, where similar themes emerged between the patients.\u003c/p\u003e \u003cp\u003eIn addition to the new knowledge regarding women with endometriosis and repeat ED use, this study also adds valuable information on the GED setting, where very few studies have been performed. As little is known about patients’ experience in the GED setting, this study also contributes to the development of care in this field.\u003c/p\u003e \u003cp\u003eThe study also has some limitations. First, one of the interviewers was a registered nurse who, at the time of the interviews, was in a care relationship with some of the women. The patients were informed about the interviewers’ backgrounds, and being interviewed by an HCP could be seen as a power imbalance and affect the willingness to share experiences. On the other hand, the fact that one of the interviewers was known to the participants could also have favoured trust and openness during the interview. Our impression was that all women honestly shared their experiences during the interviews. Second, two of the interviews were performed digitally, and this could have had an effect on the interaction and sharing experiences. Third, the study did not include persons who did not speak Swedish. This limitation could affect the transferability of the findings, as the ED treats patients with different ethnic backgrounds. Finally, the interviews were conducted at one GED, and the experiences may differ at other clinics.\u003c/p\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eKnowledge Gap\u003c/h2\u003e \u003cp\u003eThis study provides new and unique perspectives on patients’ experiences and expectations in the context of endometriosis and repeat GED visits. Many women thought that a care plan would improve their care at the GED and decrease the insecurity they felt when they visited the GED. To our knowledge, this is the first study carried out in this specific setting, and our findings need to be explored further. The benefits of a care plan in the context of endometriosis should be studied in future research. In addition, we have identified a lack of studies regarding endometriosis and PCC, an additional important knowledge gap in this large patient group.\u003c/p\u003e \u003cp\u003eTo further develop care at the GED, investigating HCPs’ experiences and expectations of treating and caring for women with endometriosis at the GED is needed. As one of the interviewed women said,\u003c/p\u003e \u003cp\u003e \u003cem\u003eThank you so much for taking the time and doing what you’re doing here because it’s so important and a step in the right direction. We must never be silenced again. For our own sake, and for the sake of our children and our grandchildren moving forward, like. (2)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e "},{"header":"Conclusions and implications","content":"\u003cp\u003eWomen with endometriosis who repeatedly need to use the GED still mostly lack individualized care plans. Pain was the reason why the women we interviewed needed to visit the GED, but many of the women felt uncertainty before the visit, as they did not know what kind of treatment they would receive, and many expressed that the most important thing for them was to be listened to. This study contributes to the limited research on women’s experiences of living with endometriosis combined with experiences of GED visits. Our findings support the development of PCC.\u003c/p\u003e\u003ch2\u003eRelevance to clinical practice\u003c/h2\u003e\u003cp\u003eOur findings have identified several areas where the care of women with endometriosis can be improved. We have shown that multiple visits to the GED in women with endometriosis are due to pain, indicating that pain management should be prioritized. Many women experienced that a visit at the GED could be compared to entering a lottery, as they did not know what kind of treatment they would receive, and this was associated with negative feelings including uncertainty. A care plan could improve this problem, while simultaneously facilitating the assessment and treatment at the GED.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e The study was approved by the Regional Ethical Review Board in Link\u0026ouml;ping, Sweden (2022-09-20, Dnr 2022-03306-01).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent of publication\u003c/strong\u003e Not applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData Availability\u003c/strong\u003e The datasets used and analysed during current study are available from the corresponding author on reasonable request\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests:\u0026nbsp;\u003c/strong\u003eThe authors declare no competing interests\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u0026nbsp;\u003c/strong\u003eOpen access funding provided by University of Gothenburg\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors contributions\u003c/strong\u003e CRE, HH, INH and MF designed the study. CRE and INH conducted the interview. CRE and HH conducted the analysis, and the analyses was validated by HH, INH and MF. CRE prepared the first draft of this article, and all authors contributed important revisions. All authors have read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict an interest:\u003c/strong\u003e None of the authors declares any conflicts of interest.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests:\u0026nbsp;\u003c/strong\u003eThe authors declare no competing interests\u003c/p\u003e\n\u003cp\u003ePatient or Public Contribution: The study data is based on interviews with ten endometriosis patients. However, there was no funding to remunerate any of the women for participating.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eBecker, C.M., et al., \u003cem\u003eESHRE guideline: endometriosis.\u003c/em\u003e Hum Reprod Open, 2022. \u003cstrong\u003e2022\u003c/strong\u003e(2): p. hoac009.\u003c/li\u003e\n\u003cli\u003eFuldeore, M.J. and A.M. Soliman, \u003cem\u003ePrevalence and Symptomatic Burden of Diagnosed Endometriosis in the United States: National Estimates from a Cross-Sectional Survey of 59,411 Women.\u003c/em\u003e Gynecol Obstet Invest, 2017. \u003cstrong\u003e82\u003c/strong\u003e(5): p. 453-461.\u003c/li\u003e\n\u003cli\u003eSarria-Santamera, A., et al., \u003cem\u003eSystematic Review and Meta-Analysis of Incidence and Prevalence of Endometriosis.\u003c/em\u003e Healthcare (Basel), 2020. \u003cstrong\u003e9\u003c/strong\u003e(1).\u003c/li\u003e\n\u003cli\u003eSimoens, S., et al., \u003cem\u003eThe burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres.\u003c/em\u003e Human Reproduction, 2012. \u003cstrong\u003e27\u003c/strong\u003e(5): p. 1292-1299.\u003c/li\u003e\n\u003cli\u003eVigan\u0026ograve;, P., et al., \u003cem\u003eEndometriosis: epidemiology and aetiological factors.\u003c/em\u003e Best practice \u0026amp; research Clinical obstetrics \u0026amp; gynaecology, 2004. \u003cstrong\u003e18\u003c/strong\u003e(2): p. 177-200.\u003c/li\u003e\n\u003cli\u003eCulley, L., et al., \u003cem\u003eThe social and psychological impact of endometriosis on women\u0026apos;s lives: a critical narrative review.\u003c/em\u003e Human Reproduction Update, 2013. \u003cstrong\u003e19\u003c/strong\u003e(6): p. 625-639.\u003c/li\u003e\n\u003cli\u003eLagana, A.S., et al., \u003cem\u003eControl of symptoms relapse after conservative surgery for endometriosis: advantages of using dienogest plus estradiol valerate.\u003c/em\u003e Journal of Endometriosis, 2013. \u003cstrong\u003e5\u003c/strong\u003e(Suppl 1): p. 20-21.\u003c/li\u003e\n\u003cli\u003eVetvicka, V., et al., \u003cem\u003eRegulation of apoptotic pathways during endometriosis: from the molecular basis to the future perspectives.\u003c/em\u003e Archives of gynecology and obstetrics, 2016. \u003cstrong\u003e294\u003c/strong\u003e: p. 897-904.\u003c/li\u003e\n\u003cli\u003eHuntington, A. and J.A. 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Clarke, \u003cem\u003eUsing thematic analysis in psychology.\u003c/em\u003e Qualitative research in psychology, 2006. \u003cstrong\u003e3\u003c/strong\u003e(2): p. 77-101.\u003c/li\u003e\n\u003cli\u003eFacchin, F., et al., \u003cem\u003e\u0026ldquo;Free butterflies will come out of these deep wounds\u0026rdquo;: A grounded theory of how endometriosis affects women\u0026rsquo;s psychological health.\u003c/em\u003e Journal of Health Psychology, 2018. \u003cstrong\u003e23\u003c/strong\u003e(4): p. 538-549.\u003c/li\u003e\n\u003cli\u003eGupta, J., et al., \u003cem\u003eLife disruptions, symptoms suggestive of endometriosis, and anticipated stigma among college students in the united states.\u003c/em\u003e Women\u0026apos;s Health Reports, 2021. \u003cstrong\u003e2\u003c/strong\u003e(1): p. 633-642.\u003c/li\u003e\n\u003cli\u003eH\u0026aring;llstam, A., et al., \u003cem\u003eLiving with painful endometriosis\u0026ndash;A struggle for coherence. A qualitative study.\u003c/em\u003e Sexual \u0026amp; Reproductive Healthcare, 2018. \u003cstrong\u003e17\u003c/strong\u003e: p. 97-102.\u003c/li\u003e\n\u003cli\u003eMoradi, M., et al., \u003cem\u003eImpact of endometriosis on women\u0026rsquo;s lives: a qualitative study.\u003c/em\u003e BMC Women\u0026apos;s Health, 2014. \u003cstrong\u003e14\u003c/strong\u003e(1): p. 123.\u003c/li\u003e\n\u003cli\u003eSullivan, M.J., et al., \u003cem\u003eTheoretical perspectives on the relation between catastrophizing and pain.\u003c/em\u003e Clin J Pain, 2001. \u003cstrong\u003e17\u003c/strong\u003e(1): p. 52-64.\u003c/li\u003e\n\u003cli\u003eMilton, J., et al., \u003cem\u003ePatients\u0026apos; perspectives on care, communication, and teamwork in the emergency department.\u003c/em\u003e Int Emerg Nurs, 2023. \u003cstrong\u003e66\u003c/strong\u003e: p. 101238.\u003c/li\u003e\n\u003cli\u003eCoulter, A. and J. Oldham, \u003cem\u003ePerson-centred care: what is it and how do we get there?\u003c/em\u003e Future Hosp J, 2016. \u003cstrong\u003e3\u003c/strong\u003e(2): p. 114-116.\u003c/li\u003e\n\u003cli\u003eDudas, K., et al., \u003cem\u003eUncertainty in illness among patients with chronic heart failure is less in person-centred care than in usual care.\u003c/em\u003e European Journal of Cardiovascular Nursing, 2013. \u003cstrong\u003e12\u003c/strong\u003e(6): p. 521-528.\u003c/li\u003e\n\u003cli\u003eErebouni A, S.C., \u003cem\u003eThe meaning of person-centred care in the perioperative nursing context from the patient\u0026apos;s perspective \u0026ndash; an integrative review.\u003c/em\u003e Journal of Clinical Nursing (John Wiley \u0026amp; Sons, Inc.), 2017. \u003cstrong\u003e26\u003c/strong\u003e(17-18).\u003c/li\u003e\n\u003cli\u003eBull, C., et al., \u003cem\u003eA systematic mixed studies review of patient experiences in the ED.\u003c/em\u003e Emerg Med J, 2021. \u003cstrong\u003e38\u003c/strong\u003e(8): p. 643-649.\u003c/li\u003e\n\u003cli\u003eEkman, I., et al., \u003cem\u003ePerson-centered care--ready for prime time.\u003c/em\u003e Eur J Cardiovasc Nurs, 2011. \u003cstrong\u003e10\u003c/strong\u003e(4): p. 248-51.\u003c/li\u003e\n\u003cli\u003eEkman, N., et al., \u003cem\u003eObservable indicators of person-centred care: an interview study with patients, relatives and professionals.\u003c/em\u003e BMJ open, 2022. \u003cstrong\u003e12\u003c/strong\u003e(4): p. e059308.\u003c/li\u003e\n\u003cli\u003eGrundstr\u0026ouml;m, H., et al., \u003cem\u003eThe double-edged experience of healthcare encounters among women with endometriosis: A qualitative study.\u003c/em\u003e J Clin Nurs, 2018. \u003cstrong\u003e27\u003c/strong\u003e(1-2): p. 205-211.\u003c/li\u003e\n\u003cli\u003eSchreurs, A.M.F., et al., \u003cem\u003eTowards more patient-centred endometriosis care: a cross-sectional survey using the ENDOCARE questionnaire.\u003c/em\u003e Hum Reprod Open, 2020. \u003cstrong\u003e2020\u003c/strong\u003e(3): p. hoaa029.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Endometriosis, Gynecological emergency department, Pain, Person-centered care, Responsibility","lastPublishedDoi":"10.21203/rs.3.rs-3498890/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3498890/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eEndometriosis is a common condition affecting 1\u0026ndash;10% of all women. The condition is highly associated with pain. Most women with endometriosis are treated as elective outpatients, but these patients sometimes need to visit the emergency department.\u003c/p\u003e\u003ch2\u003eAim\u003c/h2\u003e \u003cp\u003eThe aim of this study was to increase knowledge about women with endometriosis repeatedly visiting the gynaecological emergency department (GED), to investigate patient experiences and expectations, and to explore unmet needs necessitating GED visits.\u003c/p\u003e\u003ch2\u003eMethod\u003c/h2\u003e \u003cp\u003eSemi structured interviews were conducted with ten patients diagnosed with endometriosis who visited the GED at a tertiary university hospital four or more times within a 12-month period. Data were analysed by thematic content analysis.\u003c/p\u003e\u003ch2\u003eResult\u003c/h2\u003e \u003cp\u003e\u0026lsquo;Pain\u0026rsquo; was identified as the master theme, which embodied the women\u0026rsquo;s overall experience, grouped into two main themes: \u0026lsquo;Living with endometriosis\u0026rsquo; and \u0026lsquo;What patients need when seeking help at the GED,\u0026rsquo; with six underlying themes. Several women described their visit to the GED as a \u0026lsquo;lottery,\u0026rsquo; as they never knew what kind of treatment they would receive. Being listened to was most important for the women. Individualized care plans did not exist for most of the women in this study, although they repeatedly needed to visit the GED.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eThe women\u0026rsquo;s primary cause for seeking GED care was acute and unmanageable pain. A common feeling among the women was insecurity before the GED visit. To decrease this insecurity regarding assessment and treatment, a care plan for women is warranted. Our findings support the need for person-centered care and contribute to the limited research about women suffering from endometriosis and their experiences with GED.\u003c/p\u003e","manuscriptTitle":"Endometriosis leading to frequent emergency department visits – women’s experiences and perspectives","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2023-11-07 15:17:48","doi":"10.21203/rs.3.rs-3498890/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"b2210525-603f-4c9d-9c8e-e68eab88900f","owner":[],"postedDate":"November 7th, 2023","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2023-11-26T06:14:19+00:00","versionOfRecord":[],"versionCreatedAt":"2023-11-07 15:17:48","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-3498890","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-3498890","identity":"rs-3498890","version":["v1"]},"buildId":"B-jG_2CBjPDmsCi4Wdhf-","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}