Endometriosis leading to frequent emergency department visits-women's experiences and perspectives

Endometriosis is a common condition in women, the prevalence of which has been reported up to 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 ]. The “gold standard” for diagnosing endometriosis is a laparoscopy with histological confirmation of endometrial tissue. It often takes many years to get diagnosed and to find a proper treatment. During diagnosis, women meet many different healthcare professionals and diagnosis delay is associated with a lot of frustration. They frequently describe health professionals as problematic including normalization and trivialization of symptoms [ 10 – 14 ]. 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 [ 15 , 16 ] 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) [ 11 ]. 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.

The analysis identified two main themes: “Living with pain” and “Patients’ needs when seeking GED”, including six underlying themes which is illustrated in Fig 1 . All themes are illustrated by quotations from the interviewed women and labelled with the interview number. 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) 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) 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. 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) 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) 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) 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. 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 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 plan, both for themselves and for the HCPs. A well-developed 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 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 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 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)`

Women with endometriosis who repeatedly need to use the GED still mostly lack individualized health 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. 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 health plan could improve this problem, while simultaneously facilitating the assessment and treatment at the GED.

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. 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 during 1 jan 2021 to 1 jan 2022. Other 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. Out of 17 women visited the GED four times or more, ten women with most visits within 12 months were first asked to participate after the inclusion criteria was fulfilled. The median number of times the women had visited the GED was eight (range four to 23). All initially invited women (n = 10) agreed to participate and signed informed consent before the interviews was conducted. The median age of the participants was 35 years (range 23–51 years). Details of their demographic characteristics are given in Table 1 . 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 a written informed consent was given before the interview started. The participants could choose if they preferred a face-to-face interview or a digital interview. Out of the total number of interviews conducted, eight were face to face and took place at the hospital and two were performed digitally. 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. The interviews took place between 28 oct 2022 to 5 jan 2023. 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 S1 File ) 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.), both registered nurses but not working at the GED, performed the interviews. One of the interviews was conducted by the two authors together to align the approach. The interviews were analysed using thematic content analysis according to Braun and Clarke [ 17 ]. 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. The study was approved by the Regional Ethical Review Board in Linköping, Sweden (2022-09-20, Dnr 2022-03306-01). All participants gave their oral and written informed consent to participate in the study.

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