Endometriosis: assessing knowledge, perceptions, and experiences of patients’ encounters with health care professionals.

Endometriosis is a chronic gynecological condition affecting 1 in every ten women of reproductive age. Primarily, it is characterized by excruciating pain during menstruation and sometimes outside the menstruation cycle. This study aims to discover the perceptions and experiences of women living with endometriosis during their encounters with healthcare professionals. The literature review encompassed CINAHL and PubMed databases published between 2014-2024. After the article selection process, five articles were selected for the study out of the total 476 articles retrieved. During the analysis, four main themes emerged, each highlighting a crucial aspect of the patient experience:' Inadequate knowledge,'' Medical myths and Ignorance,'' Availability and quality of care, and' Lack of support.' Accordingly, there is an urgent need for comprehensive patient care that considers each patient's unique needs and wishes and the necessity of addressing these issues in patient care. This study highlights healthcare professionals' crucial role in supporting women grappling with endometriosis and the urgent need for improved communication between healthcare professionals and patients. These findings offer invaluable insights that can be leveraged to bolster patient-centered care, foster better communication, and ultimately elevate the overall well-being of individuals affected by this chronic condition. Keywords/tags (subjects) Endometriosis, Health Care professionals, Perceptions Miscellaneous (Confidential information) N/A 1 Contents 1 Introduction .......................................................................................................................... 3 2 Background ........................................................................................................................... 4 2.1 Endometriosis as a Mystery .............................................................................................. 4 2.2 Pathogenesis ..................................................................................................................... 5 2.3 Diagnosis ........................................................................................................................... 6 Figure 1. Endometriosis Subtypes (Allaire, Bedaiwy, & Yong, 2023) ......................................... 7 2.4 Treatment .......................................................................................................................... 8 2.4.1 Selfcare .............................................................................................................................. 8 2.4.2 Use of painkillers ............................................................................................................... 9 2.4.3 Hormonal Therapy ............................................................................................................ 9 2.4.4 Surgery ............................................................................................................................ 10 2.4.5 Hysterectomy .................................................................................................................. 10 3 Aim, purpose and research question .................................................................................. 11 4 Methods .............................................................................................................................. 12 4.1 Literature Review ............................................................................................................ 12 4.2 Article selection process ................................................................................................. 13 4.3 Data selection process .................................................................................................... 14 Figure 2: Prisma chart (Page, et al., 2021) ............................................................................... 15 4.4 Method of Analysis .......................................................................................................... 15 5 Results ................................................................................................................................. 17 5.1 Inadequate knowledge .................................................................................................... 17 5.2 Medical ‘Myths’ and Ignorance ....................................................................................... 17 5.3 Availability and Quality of care ....................................................................................... 18 5.4 Lack of support ................................................................................................................ 19 6 Discussion ............................................................................................................................ 20 7 Ethical considerations ......................................................................................................... 22 8 Conclusion ........................................................................................................................... 23

................................................................................................................................... 24 Appendices .................................................................................................................................. 29 Appendix 1. Summary of included articles............................................................................... 29 Appendix 2. Critical appraisal of the selected articles ............................................................. 31 Appendix 3. Content analysis of the articles ............................................................................ 32 2 Figures Figure 1. Endometriosis Subtypes (Allaire, Bedaiwy, & Yong, 2023)............................................. 7 Figure 2. Prisma chart (Page, et al., 2021) .................................................................................... 15 Figure 3. Snip representation of Data Analysis ............................................................................. 16 Tables Table 1. PICO illustration ................................................................ 12 Table 2. Inclusion and Exclusion criteria .............................................................................. 13 3 1 Introduction Endometriosis is a painful condition whereby tissue like that in the uterus lining grows elsewhere in the body. According to the Endometriosis Research Center (ERC), the disease is characterized by excruciating pain, dysfunction of some organs, and swelling. Every 1 in 10 women is affected by endometriosis, which is an estimated 200 million women around the globe. Endometriosis has also been reported among adolescent teenagers and gender -diverse people by ERC (Endometriosis Re - search Center, 2024). Moreover, endometriosis is irrespective of race, age, and socioeconomic. It is mainly trivialized as just "normal period cramps." Still, endometriosis is far more than just "painful periods" – the impact of the condition on its victims goes beyond social, emotional, and psychological challenges. Healthcare financial constraints are also among the frustrations faced by patients. This may take a toll on their mental health, hence a negative effect on their quality of life. Endometriosis is also often mistaken for other conditions, including pelvic inflammatory disease, fibroids, and polycystic ovarian syndrome; hence, symptoms are habitually dismissed – leading to a delay in diagnosis for up to 10 years (Endometriosis Research Center, 2017; Armour et al., 2022; Weckesser & Bullo, 2024). Given the complexity of endometriosis and the lack of comprehensive classification systems, it is crucial to explore patient experiences to complement existing clinical knowledge. While progress is being made in research and healthcare practices, there are still significant gaps in understanding the holistic impact of endometriosis on individuals' lives. This thesis aims to fill these gaps by exploring the perceptions and encounters of patients with healthcare professionals. By shedding light on the challenges, barriers, and facilitators that shape the care journey of those living with endometriosis, this research can provide valuable insights to enhance patient -centered care. This approach, which prioritizes the needs and experiences of patients, can significantly improve communication between patients and providers and ultimately enhance the overall well -being of individuals affected by this chronic condition. 4 2 Background 2.1 Endometriosis as a Mystery Endometriosis has been referred to as an ‘enigmatic’ condition as little is known about it. It is among the chronic diseases that lack clarity on the cause and are characterized by frustrating clinical encounters. Patients suffering from endometriosis experience very real and often debilitating symptoms that are invisible to healthcare providers. Strides are being made by the Endometriosis Center and other researchers on the condition (Endometriosis Research Center, 2024; Abraham & V., 2024). The systems used to classify endometriosis that health care professionals have developed have traditionally only been based on the location of the condition anatomically, lesion appearance, and pelvic adhesions. However, no single system correctly classifies endometriosis and its associated symptoms (Lee, Koo, & Lee, 2021). The quality of life of the people who suffer from endometriosis is increasingly affected, given that they have at least ten days of ‘work disability.’ This is in the older employed women and the younger adolescents who may register absenteeism due to pain, which portrays them as a liability to their employers. In Finland, however, the study concluded no correlation between endometriosis and unemployment or disability retirement (Rossi et al., 2021). Endometriosis patients have reported suffering direct consequences in their career’s life, such as not receiving promotions, missing important work seminars and events, or worse still, being dismissed due to the chronic pain and fatigue symptoms presented by the condition (Vermeulen et al., 2021). Additionally, endometriosis presents mental and emotional effects on its host. Patients have reported not getting enough sleep as the pain demands them to stay up late into the night, resulting in fatigue, inability to make plans, anxiety, depression, and, in some cases, low self-esteem (Bell et al., 2023). Some countries have made some notable progress by granting menstrual leave. This is helpful for all women, but even more for women who are suffering from painful periods like endometriosis. For example, the Government of Spain introduced a paid “menstrual leave” law for those with disabling period pains (Bello & Llach, 2023). 5 In their handbook, Levitt & Barnack -Tavlaris (2020) state that Zambia, Taiwan, South Korea, the Philippines, Indonesia, Japan, and Vietnam are also among the countries that have approved menstrual sick leave for employees with a confirmed endometriosis diagnosis. They also state that the menstrual leave policy would benefit the recipients if cultural beliefs and attitudes towards menstruation are challenged in the workplace. 2.2 Pathogenesis Pathogenesis is the indication of where a disease originates and how it develops. The origin of endometriosis has yet to be discovered. Even with theories such as retrograde menstruation theory, immunologic dysfunction theory, environmental toxins theory, and genetics theory, however convincing, none of the theories clearly explains the origination of endometriosis in all patients (Endometriosis Research Center, 2024). In his publication, Rolla (2019) explains that the pathogenesis of endometriosis has been described with a wide range of speculations that the facts would associate the condition with multigenic disorders. Rolla (2019) mentions further that in some women, it starts from birth. Some of the research done in Finland has helped to make progress in the area. It was found that there was a higher chance of endometriosis reduction in women who have given birth (Tuominen et al., 2023). On the contrary, endometriosis has been associated with infertility issues in patients. An exact correlation between the two has yet to be established. Treating each case uniquely would help meet each patient's needs (Bonavina & Taylor, 2022). When it comes to immigrant women, for instance, from African-indigenous backgrounds, some of them have no idea that they may have endometriosis as they leave their homes. This is due to a lack of developed technologies to diagnose endometriosis earlier, a lack of trained/qualified general practitioners, a lack of access to gynecologists, and low interest in researching or creating awareness about endometriosis. It is also believed that since African communities tend to have high fertility rates and teenage pregnancies then, endometriosis would be a rare occurrence since reproductive patterns, according to this belief, contribute to the pathogenesis of endometriosis (Kyama et al., 2007; Somigliana et al., 2012; Bergen et al., 2023). 6 2.3 Diagnosis A diagnosis is the ability to pinpoint the cause of an illness from the symptoms a patient mentions. As Allaire (2023) pointed out, the diagnosis of endometriosis is challenging because of the different symptoms that each patient presents. Symptoms of dyspareunia, dysmenorrhea, and other physical pains can make it hard for healthcare professionals to give a precise diagnosis for endometriosis. With the non-uniformity of symptoms, healthcare professionals ought to find it essential to have a high index of speculation for endometriosis (Allaire, Bedaiwy, & Yong, 2023). According to the Endometriosis Research Centre (2024), endometriosis patients feel that the pain assessment tools, i.e., numerical rating scale, are not effective in assessing pain levels in endometriosis patients. They opt to describe the pain in metaphorical terms such as "like someone is stabbing with a large knife" or "it is like a hot poker has been planted inside my stomach," debilitating, excruciating, and numbing pain. Understanding the metaphors and similes used by endometriosis patients would help reduce the diagnosis time (Weckesser & Bullo, 2024). From a study done on adolescents between the years 1987 and 2012 in Finland, most adolescents had their endometriosis confirmed through a surgical procedure. It is also one of the challenges of the condition; there are yet-to-be-known confirmation methods, for instance, a blood sample test, to diagnose endometriosis (Rasp et al., 2022). Pelvic endometriosis has been divided into three sub- types, as displayed in Figure 1 below. The patient may sometimes experience overlapping symptoms, making it hard to diagnose accurately. Deep endometriosis has been reported to cause kidney failure if not diagnosed and managed at a suitable time. Growth of endometrial tissues can also occur in the thoracic cavity and diaphragm. Sometimes, endometriosis has been reported to be 'accidentally' discovered in patients while performing a different surgery (Allaire, Bedaiwy, & Yong, 2023). 7 Figure 1. Endometriosis Subtypes (Allaire, Bedaiwy, & Yong, 2023). As discussed further by Zanden, Kok, Nelen, Didi & Nap (2021), some of the women who have been diagnosed with endometriosis have also had issues with bowel movements, pain while passing urine, and even lower back pains. However, the diagnosis usually takes time because some symptoms are considered normal and not given attention (Zanden, Kok, Nelen, Didi, & Nap, 2021). According to Leonardi, Lam, Abrão, Johnson, & Condous (2020), endometriosis has been regarded as benign; hence, its symptoms are mostly ignored. It has also been reported that normalizing the pain experienced by endometriosis patients and the stigma that comes with discussing matters surrounding menstruation and women's reproductive health has played a crucial role in delaying the endometriosis diagnosis (Davenport, Smith, & Green, 8 2023). A study conducted in Kenya adds that the menstruation topic is considered a secret and 'sacred' such that it would be shameful to discuss among adolescent girls. The fear of being regarded as 'attention seekers' among their peers prevents them from sharing their worries about heavy, long, and painful menstrual days, hence the delay in diagnosis (Bergen, et al., 2023). 2.4 Treatment There is no known cure for endometriosis up to now. There have been myths going around presenting different methods that could ‘cure’ endometriosis. Women have reported to have been told by medical practitioners to get pregnant (Bergen, et al., 2023). Pregnancy may relieve symptoms but does not however cure endometriosis nor does removal of the uterus (Endo Zone, 2024). Different management methods have been devised to help with the disabling pain that is associated with endometriosis. Period pain that interferes with the day -to-day life of an individual is not nor - mal. A surgical procedure is performed to remove the lesions, hormonal therapies, pain killers and other non-pharmacological options are among the ways to deal with endometriosis. Even though some of these methods help manage pain, clinicians should be considerate of other effects like costs, mental health issues, sexual relations, and social activities (Barbara, Buggio, Facchin, & Ver - cellini, 2021). 2.4.1 Selfcare Self-care as a coping mechanism for women living with endometriosis involves gaining a comprehensive understanding of the condition, which aids in symptom management. Self -efficacy, an essential quality to possess when dealing with a chronic condition, not only enables pain management but also builds mental and physical resilience to cope with endometriosis (O'Hara, Rowe, & Fisher, 2021). According to BMC Medicine (2023), support groups for women living with endometriosis provide community and understanding, whether in person or through social media, fostering greater awareness, early diagnosis, and timely treatment. Dietary restrictions such as reducing fatty foods and increasing fiber consumption have shown significant progress in the at - home management of endometriosis, offering a beacon of hope for women. By reducing meat intake and incorporating plant-based products, women living with endometriosis can further mitigate their risk of development (Barnard, et al., 2023). 9 2.4.2 Use of painkillers Nonsteroidal anti‐inflammatory drugs (NSAIDs) have been considered as the primary approach to‐ wards management of pain in women living with endometriosis due to their availability as over the counter drugs. NSAIDs have adverse side effects such as diarrhea, vomiting, nausea, dizziness, and headaches. There is however limited data to show their effectiveness and if there is need to complement them with other drugs (Brown, Crawford, Allen, Hopewell, & Prentice, 2017). 2.4.3 Hormonal Therapy Hormonal therapy, such as the use of oral or injectable contraceptives (combined or progestins), helps suppress the lesions by completely stopping ovulation and menstruation thereof, hence man- aging pain experienced by endometriosis patients. Eliminating the lesions improves fertility in these women (Vercellini, Viganò, Somigliana, & Fedele, 2014). Hormonal therapy options have proven to have high efficacy and tolerability after several trials in establishing which one works well for a specific patient with little to zero side effects. However, they are discouraged by women trying to conceive (Allaire, Bedaiwy, & Yong, 2023). A study by Shah et al. (2024) argues that hormonal therapies present a variety of side effects ranging from mood swings, vaginal dryness, weight gain, low sex drive, depressive episodes, hot flushes, and many more hence lowering the quality of life of the patient instead of improving. Shah et al. (2024) goes ahead to mention that herbal therapy would be less harmful, and more research on this can be beneficial in the effective management of endometriosis. Further research indicates that di- chloroacetate, a drug investigated earlier in cancer treatment, showed an evident decrease in the size of the lesions a week after being tested in the laboratory on endometriosis lesions. Once con- firmed, this research would bring hope to endometriosis patients, ending the misery of numbing pain and improving quality of life (The University of Edinburgh, 2024). Inhaling cannabis is of help in managing endometriosis pain. It also has digestion benefits and im - proves mood in patients suffering from endometriosis. It is, however, subject to research, and clinical confirmation is yet to be provided. Moreover, medicinal cannabis may not be effective since its use is surrounded by stigma and negative attitudes from healthcare providers (Sinclair et al., 2021; Shah et al., 2024; Sinclair, Abbott, Proudfoot, & Armour, 2023). 10 2.4.4 Surgery Surgery, particularly laparoscopic surgery, is considered a possible therapeutic intervention for endometriosis once the patient has tried all other pain management options. The removal of lesions through this procedure is done in the hope of restoring the normal functioning of the pelvis and reducing the pain associated with the condition. It, however, does not necessarily ‘heal’ the condition as, in some cases, the endometriomas reoccur, hence the need for a second or third surgery. However, one of the significant advantages of laparoscopic surgery is its role in reducing hospital stays and promoting faster recovery, which can be a source of relief for many patients (Mechsner, 2022; Tanbo & Fedorcsak, 2017). 2.4.5 Hysterectomy If all other treatment options fail, this is the last resort. It is primarily in a case where the woman is no longer interested in having children and wishes to lead a pain -free and better -quality life. Hysterectomy, however, has been proven futile in eliminating the lesions. Some women have reported recurrence of their symptoms even after the surgery. The case is more common, especially for women who keep one of their ovaries. There is no certain reason for the recurrence, even though some healthcare professionals believe it is due to the persistent nature of the disease (Rizk et al., 2014). 11 3 Aim, purpose and research question. The aim of this study is to find out the perceptions and experiences of women living with endometriosis during their encounters with health care professionals. The purpose is to take into consideration existing and relevant literature to not only create awareness on endometriosis and improve the quality of care offered to women living with the condition. This literature review seeks to find out: What are the perceptions and experiences of patients in their encounter with healthcare professionals? 12 4 Methods 4.1 Literature Review This thesis was conducted on a literature review. The author identified relevant prior literature on the topic to help answer the research question. A literature review involves systematically collecting and synthesizing previous research, integrating the findings to address the research question, identifying specific areas where more research is required, and reviewing controversies. A literature review has, over time, proved to be an effective research method as it helps in discussing matters, creating research agendas, or identifying gaps in research in a detailed and organized way (Snyder, 2019). After identifying the research question, the author finds a search strategy to produce relevant data that answers the question, “What are the perceptions and experiences of patients in their encounter with Healthcare professionals?” The author used the PICO framework (Patient, intervention, comparison, outcome) to develop the research question and to ensure all relevant components are well defined (Eriksen & Frandsen, 2018). Population Healthcare Professionals* OR healthcare worker* OR nurse* OR Doctor* OR medical staff OR healthcare center Interest Perspective, knowledge, or education or understanding or awareness. Context endometriosis or endometrioses or endometrioma or endometriomas Table 1: PICO illustration 13 4.2 Article selection process The databases used to select relevant articles for this literature review were Cumulative Index to Nursing and Allied Health Literature CINAHL (EBSOhost) plus PubMed. Articles identified included disciplines like nurses, doctors, and healthcare assistants. The search included Keywords such as perception, attitudes, opinions, nurses, doctors, endometriosis, quality of care. The descriptors were linked with Boolean operators “OR” and “AND” as follows "healthcare professional*" OR "healthcare worker*" OR healthcare facilities* OR healthcare center* OR "medical staff" AND knowledge OR education OR understanding OR awareness AND endometriosis or endometrioses or endometrioma or endometriomas. Articles were chosen based on the inclusion and exclusion criteria. The inclusion criteria defined for selection included primary articles, articles in English language, articles with abstract, articles from the year 2014-2024, articles that have full text available for JAMK students, articles relevant to the study and were peer-reviewed articles as shown in table 2. In the exclusion criteria, articles irrelevant to the research question, articles published earlier than 2014, articles that were not peer re - viewed and articles written in a language that is not English were excluded (Eriksen & Frandsen, 2018). Inclusion criteria Exclusion criteria Primary articles Articles irrelevant to the research question Language; English Articles published earlier than 2014 Articles with Abstract Not peer reviewed Year of publication; 2014–2024 Not in English Full text is available Secondary analysed articles Peer reviewed articles Table 2: Inclusion and Exclusion criteria 14 4.3 Data selection process Search terms were applied on CINAHL and PubMed databases: (healthcare or health care or hospital or health services or health facilities or healthcare providers or healthcare sector) AND (knowledge or education or understanding or awareness or perception) AND (endometriosis or endometrioses or endometrioma or endometriomas) AND (experiences or perspectives or attitudes or views). Articles identified using the search terms were 417 from both databases. There was no duplicated article; hence, all the articles went through the screening process. The article expender and availability of free full text were applied, and there were 222 articles remaining. Since the author included only articles with abstracts, four articles were excluded. The articles were screened based on the year of publication in the past ten years; 34 articles were excluded. The remaining 184 articles were screened in reference to the language of publication, whereby English was the preferred language, peer -reviewed articles; hence, 127 articles were excluded. After remaining with the 57 articles, the author reviewed the titles of the articles one after the other while identifying which ones are relevant to the research question. After this exercise, 47 articles were eliminated. The remaining ten articles underwent a thorough assessment for eligibility by reading through the abstracts to deter- mine if they answered the research question. Only five articles met the reader's inclusion criteria and were included in the research. 15 476 Articles CINAHL= 59 PUBMED=417 Full text available: 254 articles are excluded. Studies included in review 5. Figure 2: Prisma chart (Page, et al., 2021) 4.4 Method of Analysis To identify and understand the research study better, the author used a conventional content analysis approach to help classify the data. The author read the chosen articles repeatedly in the

section, one after the other while highlighting similar thoughts and concepts. The author then identified identical themes, highlighted using different colors as shown in the snip representation below, Identification of studies via databases and registers 5 reports were excluded after reading the abstracts. Reports assessed for eligibility. 10 Reports remaining 218. Articles published outside the 10yrs window-34. Articles not in English- 1 Not peer reviewed- 126. Titles does not answer question- 47. Screening

available: 4 articles excluded. Records screened 222. Identification Included 16 figure 3, and the whole table in Appendix 3. Similar colored themes were combined to create the main topics. Different highlighted topics helped the author to categorize the themes differently, yielding four main topics (Hsieh & Shannon, 2005). Figure 3. Snip representation of Data Analysis 17 5 Results 5.1 Inadequate knowledge Patients reported that health care practitioners displayed insufficient knowledge of endometriosis as a condition, and they tend to ask questions which are not helpful in guiding the patients towards earlier diagnosis or practical enough to provide the patient with better management options for endometriosis. Medical staff as well did not feel the need to research more on the causes of pain on their patients hence a tendency of dismissing their symptoms. Sometimes the women also felt that healthcare professionals lacked fundamental knowledge on endometriosis, making them display ignorance and lack of interest in finding the exact cause of the symptoms presented by the patients. Some women felt that receiving detailed information from their healthcare providers about their condition would help them gather sufficient knowledge on how to manage their symptoms without feeling hopeless (Grundström, Alehagen, Kjølhede, & Berterö, 2017; Pettersson & Berterö, 2020; Grundström, Danell, sköld, & Alehagen, 2020). More training and education on endometriosis ought to be provided to health care professionals as it would improve their competence in dealing with patients with endometriosis making the patients feel safe, seen, heard,and understood (Gouesbet, et al., 2023; Lightbourne, Foley, Dempsey, & Cronin, 2023). 5.2 Medical ‘Myths’ and Ignorance Patients reported receiving wrong diagnoses earlier in their journey with endometriosis before receiving a correct diagnosis —some of the women mentioned being advised to get pregnant as a cure for endometriosis. The attitude displayed by some of the physicians was that “there was no diagnosis called menstrual pain” and that the women who expressed themselves in such a way were, for lack of a better term, seeking attention or somewhat lacking ‘strength’ to withstand the pain levels. It was just part of being a woman. Additionally, some women were made to believe that menstrual pain is for every woman to endure and, therefore, shied away from seeking help. In some way, they needed to convince their healthcare professionals as they insinuated that their symptoms might be imagined or exaggerated (Grundström, et al., 2017; Pettersson & Berterö, 2020; Grundström, et al., 2020). 18 ” You have to in some way convince them that it is like this and that (//) They think that you exaggerate, and you need to try hard so that they believe you, because they don’t. You experience that immediately, that they don’t believe you” (Grundström, et al., (2017), pg. 207). Some patients were told that their pain could be “stress-related” and were advised to seek psychiatric help. In trying to find answers to their debilitating pain, they felt dismissed and judged. They were made to believe that suffering is part of menstruation and, therefore, preferred not to speak up about how endometriosis pain affected their lives (Gouesbet, et al., 2023). 5.3 Availability and Quality of care Patients reported telling their stories to different medical professionals during their numerous visits. This was frustrating and draining as it resulted in a lack of continuity in care. It also felt like they were putting parts of themselves out to different people who felt unsafe. Undergoing routine gynecological examinations from time to time made the women feel that their privacy was constantly being invaded. It felt as if they had no option other than to comply with the mentally torturing procedures. They also feared that a more severe condition could be complex to detect if they didn't. Patients also indicated financial constraints that came with the management of endometriosis (Grundström, et al., 2017; Grundström, et al., 2020; Lightbourne, et al., 2023). Some patients mention being referred to other specialists, such as gastroenterologists and psychiatrists, before being examined by a gynecologist. This caused them to spend many years constantly worrying about what could be the problem, hence affecting the quality of their lives (Pettersson & Berterö, 2020). Additionally, Grundström et al. (2020) found that patients had to constantly make follow-up calls to schedule their appointments, with a waiting time of up to a year leading to late diagnosis. Gouesbet et al. (2023) highlighted the need for developing a multidisciplinary approach and strengthening the coordination between various healthcare providers in maintaining a shared medical history, as it would be helpful in early diagnosis of endometriosis, hence considering early management options. 19 5.4 Lack of support Most researchers found this area lacking. Patients experienced inadequate support from health care professionals socially, mentally, emotionally, and psychologically. Grundström et al. (2020) found out that women living with endometriosis had encounters with arrogant healthcare physicians, making them develop fear and lack of trust for the medical staff. This led to a phobia of health care centers, hence delayed diagnosis. Additionally, patients reported being treated as objects and not humans, hence feelings of low self-esteem, anxiety, loneliness, and despair. Patients deeply desired to be listened to, believed, and allowed to express themselves fully without being judged. There were, however, encounters with healthcare professionals who portrayed a lack of interest in the patient’s situation (Grundström, et al., 2017; Grundström, et al., 2020). Patients did not feel listened to or taken seriously by healthcare professionals even after raising concerns during consultations on how the condition had affected their career development and life. They desired a care plan curated for their specific needs, and continuous follow-up would build the patient-staff relationship, hence alleviating the challenges incurred in their endometriosis journey (Grundström et al., 2017; Lightbourne et al., 2023). Gouesbet et al. (2023) also found that when caregivers listen and show empathy to their patients, they greatly impact their emotional and psychological well -being as the patients feel heard, guaranteeing patient intimacy. Pettersson & Berterö (2020) add that showing empathy while incorporating a professional and competent approach resulted in the organized and holistic care of individual patient needs. 20 6 Discussion Endometriosis patients' experiences with healthcare providers are complicated and miscellaneous. While some may be positive, most patients have expressed their disappointments and frustrations in dealing with healthcare professionals. This underscores the importance of the studies reviewed in enhancing our understanding and improving healthcare services for women with endometriosis. Many endometriosis patients reported feeling misunderstood and dismissed by healthcare professionals. They expressed frustration with the lack of knowledge and awareness about the condition among healthcare providers, leading to delayed diagnosis and improper management of their symptoms. In a study by Young, Fisher, & Krikman (2017), it was found that some doctors declared endometriosis to be resulting from mental disorders and further considered themselves inadequately equipped with knowledge to care for endometriosis patients psychosocially. This uncertainty and a lack of competence makes it hard to diagnose correctly or provide the intended care to a patient. Moreover, this research highlights the prevalence of myths and misconceptions about endometriosis among healthcare professionals. When not addressed, these misconceptions can foster dismissive attitudes or trivialization of patients' symptoms, thereby significantly compromising the quality of care. The findings also emphasize the crucial role of healthcare professionals in psychological and emotional endometriosis care while dealing with the debilitating nature of endometriosis. A positive and supportive relationship with a healthcare professional was revealed to be vital. Dinh, Flaxman, Shea, & Singh (2020), in their study on endometriosis on the internet, found that most websites contained misinformation about endometriosis while others exaggerated the risk of cancer. Healthcare professionals ought to provide accurate information and direct the patients to evidence-based materials to read more about the condition. In addition to the psychological and physical effects of endometriosis, it has been reported to cause financial burdens to individuals and their families. Much money goes into getting the right diagnosis, purchasing different medications, and even In Vitro Fertilization (IVF) treatment options. Research funding from national funding agencies such as the National Institute of Health (NIH) is limited. This makes it difficult to make substantial progress in finding a cure for this chronic condition. Adequate funds for endometriosis research would improve the awareness of the disease, eliminate knowledge 21 gaps, achieve early diagnoses, provide a variety of treatment options, and consequently improve the quality of life of its victims. (Ellis, Munro, & Clarke, 2022). Furthermore, the absence of individual -centered treatment plans and the reliance on standard protocols emerged as common concerns among endometriosis patients. This highlighted the need for personalized and comprehensive care that accounted for the variability and impact of symptoms. A study by Mikesell & Bontempo (2022) revealed that while endometriosis patients often face challenges when interacting with healthcare professionals, there is a clear path for improvement when trust and interconnectedness are involved. Inadequate knowledge, delays in diagnosis, and a lack of support contribute to a negative experience for many patients. However, with improved education for healthcare providers and a greater emphasis on providing comprehensive information, dispelling myths, and offering emotional support, the quality of care for patients with endometriosis can be significantly enhanced. In a study done in the UK, patients reported misdiagnosis and dismissal of their symptoms because of language barriers or miscommunication. Women of different backgrounds for whom English was not a first language had difficulties explaining their symptoms to doctors. Women suffering from endometriosis tend to express their situation in metaphors. However, they felt that healthcare professionals did not understand them (Bullo & Weckesser, 2021). Healthcare professionals ought to familiarize themselves with the common phrases and similes used by women living with endometriosis in describing their chronic pain to improve the quality of care. When necessary, a language interpreter can be involved to ensure a patient gets the quality of care they deserve. Implications to nursing practice Nurses are involved in the primary care of patients with endometriosis. The condition demands lengthy hospital stays and numerous examinations, which can overwhelm the individual. Patient education by providing evidence-based knowledge about the condition will help to shift the mentality or myths surrounding the condition. This will comfort the patient by creating a safe environment for them to express themselves, hence improving the nurse -patient relationship. It is also crucial that the nurses have adequate knowledge of the condition to enhance their competence whendealing with endometriosis patients (Bach, Risoer, Forman, & Seibaek, 2016). 22 7 Ethical considerations Ethics are guiding norms employed in research that define what is unacceptable or acceptable de - pending on the study, the parties involved, and its relevance to society. Ethics promote honesty and truth while presenting information collected from different sources (Resnik, 2020). The reviewed articles were evaluated using a critical appraisal tool developed by Hawker, Payne, Kerr, Hardey, & Powell (2002), attached in Appendix 2. The quality of the articles was evaluated in terms of abstract and title, introduction and aims, methods and data, sampling, data analysis, ethics and bias, results, and transferability of generalizability and implications and usefulness. Articles used had a total of above/equal to 32 points. This study was conducted with utmost transparency, following the ethical guidelines. The re - searcher meticulously followed the procedure for conducting a literature review, including the se - lection of a review topic, searching for reliable sources from electronically accessible databases, and analyzing the findings in a fair and unbiased manner. The articles chosen were published in four different countries to identify the similarities of experiences cutting across. The articles were from 2014–2024 to ensure current and valid data. Authors of the chosen articles have credited their collaborators and obtained informed consent from relevant authorities to avoid conflicting interests. The tools and method of data analysis have been shared, making the article a reliable source. If the described procedure is implemented, it will produce similar results (Resnik, 2020). The study was done in respect to the JAMK University of Applied Sciences ethical guidelines, with the research articles selection being from CINAHL and PubMed databases, which are free and avail- able to all JAMK students, hence a limitation in transferability of the findings (JAMK, 2018). Plagiarism was avoided through in-text citations and referencing the respective authors of different articles. The articles selected were published in 3 different countries; however, there needs to be proof that they could represent the whole world, hence a limitation of the data. Some articles that may have benefited the study were not freely available to the author, thus limiting data transferability. These limitations are openly acknowledged, demonstrating the research's commitment to transparency and honesty. 23 8 Conclusion Endometriosis awareness among healthcare professionals still needs more attention. Healthcare providers ought to be conscious of their role in the lives of women living with endometriosis. A multi-professional approach to endometriosis care would ensure holistic care and, consequently, positive experiences. Factors such as race, language, age, and culture should also be considered to ensure patient-tailored care among endometriosis patients. The Internet has been shown to provide support to endometriosis patients both psychologically and emotionally. Online communities like Facebook, national websites, TikTok, Instagram, and women's trust organizations have allowed patients to share their symptoms and journeys, helping each other know they are not alone. It is however important that patients understand that their journeys are different and that the condition may display varying symptoms from one patient to another. The author recommends future research on psychotherapy options for endometriosis patients as a form of managing the condition's associated symptoms. There is also a need for research on how immigrants living with endometriosis cope with the condition in Finland and if language barrier could be a major hinderance to receiving satisfactory care. 24

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Summary of included articles Author Title Aim/Purpose Participants Methodology and Anal- ysis Results Country of Origin Gouesbet et al., (2023) Patients’ Perspec‐ tives on How to Improve Endome- triosis Care: A Large Qualitative Study Within the ComPaRe-Endo- metriosis e-Co- hort. Capturing ideas to im- prove endo- metriosis care from the pa- tients’ per‐ spectives 1000 adult patients Free text open- ended questions ana- lysed using qualitative thematic anal- ysis using an inductive ap- proach. 5 main themes i.e Train caregiv- ers to develop their knowledge on the disease. Provide better management of daily pain and pain attacks. Take patien- treported symp- toms seriously. Standardize di- agnostic pro- cesses to im- prove early detection Have caregivers listen more to the pa- tients France Grundström et al., (2020) “A protracted struggle” – A qualitative blog study of endometriosis healthcare experiences in Sweden The aim of this study was to identify and describe endometriosis healthcare ex- periences based on af- fected individ- uals’ blog posts. Sixteen blogs written between 2008 and 2019 by peo- ple aged 22- 34 years The analysis was con- ducted using thematic anal- ysis according to Braun and Clarke. The results are presented un- der one main theme, “A pro‐ tracted strug- gle”, and two subthemes, “The response plays a signifi- cant role” and “The value of compe- tence”. Sweden 30 Lightbourne et al., (2023) Living With Endo- metriosis: A Re- flexive Thematic Analysis Examining Women’s Experiences with the Irish Healthcare Services The study aimed to ex- plore the per- ceptions and experiences of women with endometriosis regarding the diagnosis, sup- port, and treatment op- tions available Twenty par- ticipants, women aged 18 and over with a diag- nosis of endometrio- sis and expe- rience of the Irish healthcare system A qualitative study,Data was analysed using reflexive thematic anal- ysis. 5 themes were identified: ‘dis‐ missive atti- tudes normalis- ing severe pain’, ‘inadequate health system’, ‘the impact of delayed diagno- ses’, ‘lack of educa‐ tion and aware- ness’ and ‘navi‐ gating ignorance, ta- boo, and socie- tal views’ Ireland Pettersson & Ber- terö (2020) How Women with Endometriosis Ex- perience Health Care Encounters The aim of this meta-synthe- sis was to syn- thesize and in- terpret the available qual- itative studies to increase our under- standing and extend knowledge about how women with endometriosis experience health care encounters. 370 women with diag- nosed endo- metriosis, 16– 78 years of age. Literature review 3 themes were identified: In- sufficiency knowledge,Trivi- alizing-just a women's issue and Compe- tency promotes health Sweden Grundström, et al., (2017) The double-edged experience of healthcare en- counters among women with en- dometriosis: A qualitative study To identify and describe the experience of healthcare en- counters among women with endome- triosis. 9 women aged 23–55, with a lapa- roscopy-con- firmed diag- nosis of endometrio- sis A qualitative, interpretive, phenomeno- logical ap- proach was used 2 themes: Being treated with ig- norance and be- ing acknowl- edged. Sweden 31 Appendix 2. Critical appraisal of the selected articles Author 1 abst- ract /Title 2 In- tro- duc- tion and aims 3 metho ds and data 4 samp- ling 5 Data ana- lysis 6 Et- hics and bias 7 Re- sults 8 Transfe- rability or generaliza- bility 9 Impli- cations and useful- ness Total Gouesbet et al., (2023) 4 4 4 3 4 4 4 4 4 35 Grundström et al., (2020) 4 4 4 4 4 3 4 3 4 34 Lightbourne et al., (2023) 4 4 4 3 3 4 3 3 4 32 Pettersson & Ber- terö (2020) 4 4 4 4 4 4 4 4 4 36 Grundström, et al., (2017) 4 4 4 4 4 4 4 3 4 35 32 Appendix 3. Content analysis of the articles AUTHOR ANALYSIS SUBTOPICS MAIN TOPICS Gouesbet et al., (2023) Better training of caregivers on the disease Inadequate knowledge HCPs Knowledge on Endometriosis Providing more explanation about the disease to patients Patient Education Developing research on endometriosis Inadequate knowledge Grundström et al., (2020) HCPs lack knowledge of Endometriosis Inadequate knowledge Lack of competence by asking inadequate questions or conveying inaccurate information Patient Education HCPs who could convey useful information and knowledge could change women's lives Patient Education Lightbourne et al., (2023) Lack of support and information regarding symptom management Patient Education Absence of expert surgeons Inadequate knowledge More education and awareness for medical professionals to improve diagnosis Inadequate knowledge Pettersson & Berterö (2020) Physicians lacked knowledge of the disease, which led to the diagnosis being delayed and that they did not receive adequate treatment Inadequate knowledge Physicians usually did not search for some other underlying cause of the pain Inadequate knowledge Gouesbet et al., (2023) Taking patient-reported symptoms seriously Patient-staff Relationship Medical 'myths' & Ignorance Telling patients that their pain is psychological or stress related Patient-staff Relationship Believing that it is normal to suffer during menstruation Myths and Misconcemptions Lightbourne et al., (2023) Feeling of being dismissed at both pre-diagnosis and post- diagnosis Patient-staff Relationship Normalisation of severe pain Myths and Misconcemptions Minimisation of endometriosis Myths and Misconcemptions 33 Grundström et al., (2020) HCPs not wanting to prescribe painkillers Patient-staff Relationship Misdiagnosed with different disorders such as anxiety, irritable bowel syndrome, premenstrual syndrome or sexually transmittes diseases Diagnosis Continually misinterpreted, normalised and trivialised endometriosis symptoms Diagnosis their problems were psychosomatic and that they should seek psychiatric care Psychological HCPs had recommended pregnancy as the best cure for endometriosis Psychological Pettersson & Berterö (2020) The physicians meant/felt that the symptoms were part of being a woman Psychological Some women recalled that doctors recommended pregnancy as a treatment Myths and Misconcemptions Physicians’ attitude was that women exaggerated or imagined their symptoms, like having a form of ‘‘fantasy pain,’’ or had low pain thresholds Psychological The physicians could argue that there was no diagnosis called menstrual pain, and that it was only stupid women who expressed themselves like this Psychological Young women or teenage girls were too young to have endometriosis Psychological The women could receive the recommendation to remove the uterus, even though they were only in their twenties Psychological Gouesbet et al., (2023) Proposing relevant medical exams for early diagnosis Diagnosis Availability & Quality of care Initiating screening for earlier detection Diagnosis Developing a more multidisciplinary approach in care Quality of care Providing more frequent and better organized medical follow up Quality of care Developing a more holistic approach in care Diagnosis Strengthening the shared medical record system Quality of care 34 Lightbourne et al., (2023) Participants had to retell their story many times to various medical practitioners Quality of care Women with endometriosis navigate inadequate services and try to avoid delays Diagnosis Financial costs borne by the participants in an attempt to manage their condition Financial Grundström et al., (2020) Having to fight and badger to get the telephone calls, referrals and examinations they had been promised Quality of care Struggle with the lack of continuity in their contact with HCPs Quality of care Work towards adapting the care to the individuals’ unique needs Patient-staff Relationship Pettersson & Berterö (2020) Women were referred to specialists such as psychiatrists or gastroenterologists before finally getting to meet a gynecologist Quality of care Gouesbet et al., (2023) Making caregivers listen more to patients Emotional approach Lack of Support Increasing empathy towards patients Emotional approach Initiating follow-up and monitoring Patient-staff relationship Guaranteeing patient intimacy Emotional approach Improving society's awareness and recognition of the disease Psychological Better recognition of the intensity of their pain by physicians, easier access to pain centers, relief through effective treatments, and the help of alternative Inadequate knowledge Lightbourne et al., (2023) Not feeling listened to or taken seriously Psychological This concern regarding career impact was shared by a number of participants Psychological Grundström, et al., (2020) Felling seen and confirmed Emotional approach Inhuman treatment and not having their rights to proper care respected Psychological Replace arrogant HCPs with hopefully better ones. Psychological 35 Some HCPs had even called them drug addicts, which they found offensive and degrading. Psychological Feelings of loneliness, violation and disbelief Emotional approach Low self-esteem, low self-confidence and feelings of anxiety, resignation and despair. Emotional approach Lack of trust and belief in HCPs had led to a phobia of hospitals Psychological Being seen as an individual and not as a body or an object was a key factor for a positive healthcare experience Patient-staff relationship Counsellors who could support them with the emotional consequences of the disease Emotional approach Pettersson & Berterö (2020) There were also physicians who in a more brutal way showed their lack of interest Psychological Equip physicians with the skills to acknowledge and incorporate women’s knowledge of their bodies within the medical encounters Multidisciplinary approach Showing empathy and adopting a professional and competent approach Emotional approach Grundström, et al., (2017) felt mentally exposed Psychological felt as if they were alone in the world with these symptoms Psychological encountered the attitude that they exaggerated or imagined their symptoms or had low pain threshholds Psychological exposed in a physical way Psychological HCPs were focused on finding an 'easy explanation' Psychological HCPs resorted to normalising and trivialising the problems Psychological Women were told that menstrual pain was normal for every woman to endure Myths and misconceptions Women perceived the HCPs as distant and nonchalant Emotional approach HCPs lacked basic knowledge about endometriosis Inadequate knowledge Felt confirmed and visible Psychological Feeling of being listened to and being believed, without being judged Psychological 36 humorous HCPs with good people skills Psychological HCPs could convey useful information Patient-staff relationship women had to struggle to expose the most private parts of their lives to many HCPs Psychological 37