{"paper_id":"64b855e7-009c-4c17-a713-c21bd03bbc25","body_text":"ENDOMETRIOSIS: \n \nAssessing knowledge, perceptions, and experiences of \npatients’ encounters with health care professionals. \nRABERA ONKENDI \n \n \n \n \n \n \n \n \n \nBachelor’s thesis \nMAY 2024 \nHealth and Welfare \nBachelor’s Degree Programme in Nursing \n \n \n \n \n \n \n \n\n\n \n \n \n \n \n \nOnkendi, Rabera \nDescription \n \nEndometriosis; Assessing knowledge, perceptions, and experiences of patients with health care \nprofessionals. \n \nJyväskylä: JAMK University of Applied Sciences, September 2020, 36 pages \nHealth and Welfare, Degree Program in Nursing, bachelor’s Thesis \nPermission for web publication: Yes \nLanguage of publication: English \n \nAbstract \n \nEndometriosis is a chronic gynecological condition affecting 1 in every ten women of reproductive age. \nPrimarily, it is characterized by excruciating pain during menstruation and sometimes outside the \nmenstruation cycle. This study aims to discover the perceptions and experiences of women living with \nendometriosis during their encounters with healthcare professionals. \n \nThe literature review encompassed CINAHL and PubMed databases published between 2014-2024. After \nthe article selection process, five articles were selected for the study out of the total 476 articles retrieved. \nDuring the analysis, four main themes emerged, each highlighting a crucial aspect of the patient \nexperience:' Inadequate knowledge,'' Medical myths and Ignorance,'' Availability and quality of care, and' \nLack of support.' Accordingly, there is an urgent need for comprehensive patient care that considers each \npatient's unique needs and wishes and the necessity of addressing these issues in patient care. \n \nThis study highlights healthcare professionals' crucial role in supporting women grappling with \nendometriosis and the urgent need for improved communication between healthcare professionals and \npatients. \nThese findings offer invaluable insights that can be leveraged to bolster patient-centered care, foster better \ncommunication, and ultimately elevate the overall well-being of individuals affected by this chronic \ncondition. \n \n \n \nKeywords/tags (subjects) \n \n \nEndometriosis, Health Care professionals, Perceptions \n \n \nMiscellaneous (Confidential information) \n \nN/A \n\n\n1 \n \n \nContents \n1 Introduction .......................................................................................................................... 3 \n2 Background ........................................................................................................................... 4 \n2.1 Endometriosis as a Mystery .............................................................................................. 4 \n2.2 Pathogenesis ..................................................................................................................... 5 \n2.3 Diagnosis ........................................................................................................................... 6 \nFigure 1. Endometriosis Subtypes (Allaire, Bedaiwy, & Yong, 2023) ......................................... 7 \n2.4 Treatment .......................................................................................................................... 8 \n2.4.1 Selfcare .............................................................................................................................. 8 \n2.4.2 Use of painkillers ............................................................................................................... 9 \n2.4.3 Hormonal Therapy ............................................................................................................ 9 \n2.4.4 Surgery ............................................................................................................................ 10 \n2.4.5 Hysterectomy .................................................................................................................. 10 \n3 Aim, purpose and research question .................................................................................. 11 \n4 Methods .............................................................................................................................. 12 \n4.1 Literature Review ............................................................................................................ 12 \n4.2 Article selection process ................................................................................................. 13 \n4.3 Data selection process .................................................................................................... 14 \nFigure 2: Prisma chart (Page, et al., 2021) ............................................................................... 15 \n4.4 Method of Analysis .......................................................................................................... 15 \n5 Results ................................................................................................................................. 17 \n5.1 Inadequate knowledge .................................................................................................... 17 \n5.2 Medical ‘Myths’ and Ignorance ....................................................................................... 17 \n5.3 Availability and Quality of care ....................................................................................... 18 \n5.4 Lack of support ................................................................................................................ 19 \n6 Discussion ............................................................................................................................ 20 \n7 Ethical considerations ......................................................................................................... 22 \n8 Conclusion ........................................................................................................................... 23 \nReferences ................................................................................................................................... 24 \nAppendices .................................................................................................................................. 29 \nAppendix 1. Summary of included articles............................................................................... 29 \nAppendix 2. Critical appraisal of the selected articles ............................................................. 31 \nAppendix 3. Content analysis of the articles ............................................................................ 32 \n\n2 \n \n \n \n \n \n \nFigures \n \nFigure 1. Endometriosis Subtypes (Allaire, Bedaiwy, & Yong, 2023)............................................. 7 \nFigure 2. Prisma chart (Page, et al., 2021) .................................................................................... 15 \nFigure 3. Snip representation of Data Analysis ............................................................................. 16 \n \nTables \n \nTable 1. PICO illustration ................................................................ 12 \nTable 2. Inclusion and Exclusion criteria .............................................................................. 13 \n\n3 \n \n \n \n1 Introduction \n \n \nEndometriosis is a painful condition whereby tissue like that in the uterus lining grows elsewhere in \nthe body. According to the Endometriosis Research Center (ERC), the disease is characterized by  \nexcruciating pain, dysfunction of some organs, and swelling. Every 1 in 10 women is affected by  \nendometriosis, which is an estimated 200 million women around the globe. Endometriosis has also  \nbeen reported among adolescent teenagers and gender -diverse people by ERC (Endometriosis Re - \nsearch Center, 2024). \n \nMoreover, endometriosis is irrespective of race, age, and socioeconomic. It is mainly trivialized as  \njust \"normal period cramps.\" Still, endometriosis is far more than just \"painful periods\" – the impact \nof the condition on its victims goes beyond social, emotional, and psychological challenges. \nHealthcare financial constraints are also among the frustrations faced by patients. This may take a  \ntoll on their mental health, hence a negative effect on their quality of life. Endometriosis is also  \noften mistaken for other conditions, including pelvic inflammatory disease, fibroids, and polycystic  \novarian syndrome; hence, symptoms are habitually dismissed – leading to a delay in diagnosis for  \nup to 10 years (Endometriosis Research Center, 2017; Armour et al., 2022; Weckesser & Bullo,  \n2024). \n \nGiven the complexity of endometriosis and the lack of comprehensive classification systems, it is  \ncrucial to explore patient experiences to complement existing clinical knowledge. While progress is \nbeing made in research and healthcare practices, there are still significant gaps in understanding  \nthe holistic impact of endometriosis on individuals' lives. This thesis aims to fill these gaps by  \nexploring the perceptions and encounters of patients with healthcare professionals. By shedding  \nlight on the challenges, barriers, and facilitators that shape the care journey of those living with  \nendometriosis, this research can provide valuable insights to enhance patient -centered care. This  \napproach, which prioritizes the needs and experiences of patients, can significantly improve \ncommunication between patients and providers and ultimately enhance the overall well -being of \nindividuals affected by this chronic condition. \n\n4 \n \n \n \n \n2 Background \n \n \n2.1 Endometriosis as a Mystery \n \n \nEndometriosis has been referred to as an ‘enigmatic’ condition as little is known about it. It is among \nthe chronic diseases that lack clarity on the cause and are characterized by frustrating clinical  \nencounters. Patients suffering from endometriosis  experience very real  and often debilitating  \nsymptoms that are invisible to healthcare providers. Strides are being made by the Endometriosis  \nCenter and other researchers on the condition (Endometriosis Research Center, 2024; Abraham &  \nV., 2024). The systems used to classify endometriosis that health care professionals have \ndeveloped have traditionally only been based on the location of the condition anatomically, lesion  \nappearance, and pelvic adhesions. However, no single system correctly classifies endometriosis \nand its associated symptoms (Lee, Koo, & Lee, 2021). \n \nThe quality of life of the people who suffer from endometriosis is increasingly affected, given that \nthey have at least ten days of ‘work disability.’ This is in the older employed women and the \nyounger adolescents who may register absenteeism due to pain, which portrays them as a liability \nto their  employers. In Finland, however, the study concluded no correlation between \nendometriosis and  unemployment or disability retirement (Rossi et al., 2021). Endometriosis \npatients have reported  suffering direct consequences in their career’s life, such as not receiving \npromotions, missing important work seminars and events, or worse still, being dismissed due to \nthe chronic pain and fatigue symptoms presented by the condition (Vermeulen et al., 2021). \n \nAdditionally, endometriosis presents mental and emotional effects on its host. Patients have \nreported not getting enough sleep as the pain demands them to stay up late into the night,  \nresulting in fatigue, inability to make plans, anxiety, depression, and, in some cases, low self-esteem \n(Bell et al., 2023). Some countries have made some notable progress by granting menstrual leave.  \nThis is helpful for all women, but even more for women who are suffering from painful periods like  \nendometriosis. For example, the Government of Spain introduced a paid “menstrual leave” law for  \nthose with disabling period pains (Bello & Llach, 2023). \n\n5 \n \n \n \nIn their handbook, Levitt & Barnack -Tavlaris (2020) state that Zambia, Taiwan, South Korea, the  \nPhilippines, Indonesia, Japan, and  Vietnam are also  among the countries  that have approved  \nmenstrual sick leave for employees with a confirmed endometriosis diagnosis. They also state that  \nthe menstrual leave policy would benefit the recipients if cultural beliefs and attitudes towards  \nmenstruation are challenged in the workplace. \n \n2.2 Pathogenesis \n \n \nPathogenesis is the indication of where a disease originates and how it develops. The origin of  \nendometriosis has yet  to be discovered. Even with  theories such  as retrograde menstruation  \ntheory, immunologic dysfunction theory, environmental toxins theory, and genetics theory, \nhowever convincing, none of the theories clearly explains the origination of endometriosis in all  \npatients (Endometriosis Research Center, 2024). In his publication, Rolla (2019) explains that the  \npathogenesis of endometriosis has been described with a wide range of speculations that the facts  \nwould associate the condition with multigenic disorders. Rolla (2019) mentions further that in some \nwomen, it starts from birth. Some of the research done in Finland has helped to make progress in  \nthe area. It was found that there was a higher chance of endometriosis reduction in women who  \nhave given birth (Tuominen et al., 2023). On the contrary, endometriosis has been associated with  \ninfertility issues in patients. An exact correlation between the two has yet to be established.  \nTreating each case uniquely would help meet each patient's needs (Bonavina & Taylor, 2022). \n \nWhen it comes to immigrant women, for instance, from African-indigenous backgrounds, some of \nthem have no idea that they may have endometriosis as they leave their homes. This is due to a \nlack of  developed technologies to diagnose endometriosis earlier, a lack of trained/qualified \ngeneral practitioners, a lack of access to gynecologists, and low interest in researching or creating \nawareness about endometriosis. It is also believed that since African communities tend to have high \nfertility rates and teenage pregnancies then, endometriosis would be a rare occurrence since  \nreproductive patterns, according to this belief, contribute to the pathogenesis of endometriosis  \n(Kyama et al., 2007; Somigliana et al., 2012; Bergen et al., 2023). \n\n6 \n \n \n2.3 Diagnosis \n \nA diagnosis is the ability to pinpoint the cause of an illness from the symptoms a patient mentions.  \nAs Allaire (2023) pointed out, the diagnosis of endometriosis is challenging because of the different \nsymptoms that each patient presents. Symptoms of dyspareunia, dysmenorrhea, and other physical \npains can make it hard for healthcare professionals to give a precise diagnosis for endometriosis.  \nWith the non-uniformity of symptoms, healthcare professionals ought to find it essential to have a  \nhigh index of speculation for endometriosis (Allaire, Bedaiwy, & Yong, 2023). \n \nAccording to the Endometriosis Research Centre (2024), endometriosis patients feel that the pain  \nassessment tools, i.e., numerical rating scale, are not effective in assessing pain levels in \nendometriosis patients. They opt to describe the pain in metaphorical terms such as \"like someone \nis stabbing with a large knife\" or \"it is like a hot poker has been planted inside my stomach,\"  \ndebilitating, excruciating, and numbing pain. Understanding the metaphors and similes used by  \nendometriosis patients would help reduce the diagnosis time (Weckesser & Bullo, 2024). \n \nFrom a study done on adolescents between the years 1987 and 2012 in Finland, most adolescents  \nhad their endometriosis confirmed through a surgical procedure. It is also one of the challenges of  \nthe condition; there are yet-to-be-known confirmation methods, for instance, a blood sample test,  \nto diagnose endometriosis (Rasp et al., 2022). Pelvic endometriosis has been divided into three sub- \ntypes, as displayed in Figure 1 below. The patient may sometimes experience overlapping \nsymptoms, making it hard to diagnose accurately. Deep endometriosis has been reported to cause  \nkidney failure if not diagnosed and managed at a suitable time. Growth of endometrial tissues can  \nalso occur in the thoracic cavity and diaphragm. Sometimes, endometriosis has been reported to  \nbe 'accidentally' discovered in patients while performing a different surgery (Allaire, Bedaiwy, &  \nYong, 2023). \n\n7 \n \n \n \n \nFigure 1. Endometriosis Subtypes (Allaire, Bedaiwy, & Yong, 2023). \n \n \nAs discussed further by Zanden, Kok, Nelen, Didi & Nap (2021), some of the women who have been \ndiagnosed with endometriosis have also had issues with bowel movements, pain while passing  \nurine, and even lower back pains. However, the diagnosis usually takes time because some \nsymptoms are considered normal and not given attention (Zanden, Kok, Nelen, Didi, & Nap, 2021).  \nAccording to Leonardi, Lam, Abrão, Johnson, & Condous (2020), endometriosis has been regarded  \nas benign; hence, its symptoms are mostly ignored. \n \nIt has also been reported that normalizing the pain experienced by endometriosis patients and the  \nstigma that comes with discussing matters surrounding menstruation and women's reproductive  \nhealth has played a crucial role in delaying the endometriosis diagnosis (Davenport, Smith, & Green, \n\n\n8 \n \n \n2023). A study conducted in Kenya adds that the menstruation topic is considered a secret and  \n'sacred' such that it would be shameful to discuss among adolescent girls. The fear of being  \nregarded as 'attention seekers' among their peers prevents them from sharing their worries about  \nheavy, long, and painful menstrual days, hence the delay in diagnosis (Bergen, et al., 2023). \n \n2.4 Treatment \n \nThere is no  known cure for endometriosis up  to now. There have  been myths going around  \npresenting different methods that could ‘cure’ endometriosis. Women have reported to have been \ntold by medical  practitioners to get pregnant (Bergen, et al., 2023). Pregnancy may relieve \nsymptoms but does not however cure endometriosis nor does removal of the uterus (Endo Zone,  \n2024). \nDifferent management methods have been devised to help with the disabling pain that is associated \nwith endometriosis. Period pain that interferes with the day -to-day life of an individual is not nor - \nmal. A surgical procedure is performed to remove the lesions, hormonal therapies, pain killers and  \nother non-pharmacological options are among the ways to deal with endometriosis. Even though  \nsome of these methods help manage pain, clinicians should be considerate of other effects like  \ncosts, mental health issues, sexual relations, and social activities (Barbara, Buggio, Facchin, & Ver - \ncellini, 2021). \n \n2.4.1 Selfcare \n \nSelf-care as a coping mechanism for women living with endometriosis involves gaining a \ncomprehensive understanding of the condition, which aids in symptom management. Self -efficacy, \nan essential quality to possess when  dealing with a chronic  condition, not only enables pain  \nmanagement but also builds mental and physical resilience to cope with endometriosis (O'Hara,  \nRowe, & Fisher, 2021). According to BMC Medicine (2023), support groups for women living with  \nendometriosis provide community and understanding, whether in person or through social media,  \nfostering greater awareness, early diagnosis, and timely treatment. Dietary restrictions such as  \nreducing fatty foods and increasing fiber consumption have shown significant progress in the at - \nhome management of endometriosis, offering a beacon of hope for women. By reducing meat  \nintake and incorporating plant-based products, women living with endometriosis can further \nmitigate their risk of development (Barnard, et al., 2023). \n\n9 \n \n \n2.4.2 Use of painkillers \n \nNonsteroidal anti‐inflammatory drugs (NSAIDs) have been considered as the primary approach to‐  \nwards management of pain in women living with endometriosis due to their availability as over the \ncounter drugs. NSAIDs have adverse side effects such as diarrhea, vomiting, nausea, dizziness, and  \nheadaches. There is however limited data to show their effectiveness and if there is need to  \ncomplement them with other drugs (Brown, Crawford, Allen, Hopewell, & Prentice, 2017). \n \n2.4.3 Hormonal Therapy \n \nHormonal therapy, such as the use of oral or injectable contraceptives (combined or progestins),  \nhelps suppress the lesions by completely stopping ovulation and menstruation thereof, hence man- \naging pain experienced by endometriosis patients. Eliminating the lesions improves fertility in these \nwomen (Vercellini, Viganò, Somigliana, & Fedele, 2014). Hormonal therapy options have proven to  \nhave high efficacy and tolerability after several trials in establishing which one works well for a  \nspecific patient with little to zero side effects. However, they are discouraged by women trying to  \nconceive (Allaire, Bedaiwy, & Yong, 2023). \n \nA study by Shah et al. (2024) argues that hormonal therapies present a variety of side effects ranging \nfrom mood swings, vaginal dryness, weight gain, low sex drive, depressive episodes, hot flushes,  \nand many more hence lowering the quality of life of the patient instead of improving. Shah et al.  \n(2024) goes ahead to mention that herbal therapy would be less harmful, and more research on this \ncan be beneficial in the effective management of endometriosis. Further research indicates that di-\nchloroacetate, a drug investigated earlier in cancer treatment, showed an evident decrease in  the \nsize of the lesions a week after being tested in the laboratory on endometriosis lesions. Once  con- \nfirmed, this research would bring hope  to endometriosis patients, ending  the misery of numbing \npain and improving quality of life (The University of Edinburgh, 2024). \n \nInhaling cannabis is of help in managing endometriosis pain. It also has digestion benefits and im - \nproves mood in patients suffering from endometriosis. It is, however, subject to research, and  \nclinical confirmation is yet  to be provided. Moreover,  medicinal cannabis may not  be effective \nsince its use is surrounded by stigma and negative attitudes from healthcare providers (Sinclair et  \nal., 2021; Shah et al., 2024; Sinclair, Abbott, Proudfoot, & Armour, 2023). \n\n10 \n \n \n2.4.4 Surgery \n \nSurgery, particularly laparoscopic surgery, is considered a possible therapeutic intervention for  \nendometriosis once the patient has tried all other pain management options. The removal of  \nlesions through this procedure is done in the hope of restoring the normal functioning of the pelvis \nand reducing the pain associated with the condition. It, however, does not necessarily ‘heal’ the  \ncondition as, in some cases, the endometriomas reoccur, hence the need for a second or third  \nsurgery. However, one of the significant advantages of laparoscopic surgery is its role in reducing  \nhospital stays and promoting faster recovery, which can be a source of relief for many patients  \n(Mechsner, 2022; Tanbo & Fedorcsak, 2017). \n \n2.4.5 Hysterectomy \n \nIf all other treatment options fail, this is the last resort. It is primarily in a case where the woman is  \nno longer interested in having children and wishes to lead a pain -free and better -quality life.  \nHysterectomy, however, has been proven futile in eliminating the lesions. Some women have  \nreported recurrence  of their symptoms even after the surgery. The case is more common, \nespecially for women who keep one of their ovaries. There is no certain reason for the recurrence,  \neven though some healthcare professionals believe it is due to the persistent nature of the disease  \n(Rizk et al., 2014). \n\n11 \n \n \n3 Aim, purpose and research question. \n \n \nThe aim of this study is to find out the perceptions and experiences of women living with \nendometriosis during their encounters with health care professionals. \n \nThe purpose is to take into consideration existing and relevant literature to not only create \nawareness on endometriosis and improve the quality of care offered to women living with the  \ncondition. \n \nThis literature review seeks to find out: What are the perceptions and experiences of patients in  \ntheir encounter with healthcare professionals? \n\n12 \n \n \n4 Methods \n \n \n4.1 Literature Review \n \n \nThis thesis was conducted on a literature review. The author identified relevant prior literature on  \nthe topic to help answer the research question. \n \nA literature review involves systematically collecting and synthesizing previous research, integrating \nthe findings to address the research question, identifying specific areas where more research is  \nrequired, and reviewing controversies. A literature review has, over time, proved to be an effective \nresearch method as it helps in discussing matters, creating research agendas, or identifying gaps in  \nresearch in a detailed and organized way (Snyder, 2019). After identifying the research question,  \nthe author finds a search strategy to produce relevant data that answers the question, “What are  \nthe perceptions and experiences of patients in their encounter with Healthcare professionals?” The \nauthor used the PICO framework (Patient, intervention, comparison, outcome) to develop the  \nresearch question and to ensure all relevant components are well defined (Eriksen & Frandsen,  \n2018). \n \n \n \n \n \n \nPopulation \nHealthcare Professionals* OR healthcare \nworker* OR nurse* OR Doctor* OR medical \nstaff OR healthcare center \n \n \nInterest \nPerspective, knowledge, or education or \nunderstanding or awareness. \n \n \nContext \nendometriosis or endometrioses or \nendometrioma or endometriomas \nTable 1: PICO illustration \n\n13 \n \n \n4.2 Article selection process \n \n \nThe databases used to select relevant articles for this literature review were Cumulative Index to  \nNursing and Allied Health Literature CINAHL (EBSOhost) plus PubMed. Articles identified included  \ndisciplines like nurses, doctors, and healthcare assistants. The search included Keywords such as  \nperception, attitudes, opinions, nurses, doctors, endometriosis, quality of care. The descriptors  \nwere linked with Boolean operators “OR” and “AND” as follows \"healthcare professional*\" OR  \n\"healthcare worker*\" OR healthcare facilities* OR healthcare center* OR \"medical staff\" AND  \nknowledge OR education OR understanding OR awareness AND endometriosis or endometrioses or \nendometrioma or endometriomas. \n \nArticles were chosen based on the inclusion and exclusion criteria. The inclusion criteria defined for \nselection included primary articles, articles in English language, articles with abstract, articles from  \nthe year 2014-2024, articles that have full text available for JAMK students, articles relevant to the  \nstudy and  were peer-reviewed articles as shown in table 2. In the exclusion criteria, articles \nirrelevant to the research  question, articles published earlier than 2014,  articles that were not  \npeer re - viewed and articles written in a language that is not English were excluded (Eriksen &  \nFrandsen, 2018). \n \n \n \n \nInclusion criteria Exclusion criteria \nPrimary articles Articles irrelevant to the research question \nLanguage; English Articles published earlier than 2014 \nArticles with Abstract Not peer reviewed \nYear of publication; 2014–2024 Not in English \nFull text is available Secondary analysed articles \nPeer reviewed articles  \nTable 2: Inclusion and Exclusion criteria \n\n14 \n \n \n4.3 Data selection process \n \n \nSearch terms were applied on CINAHL and PubMed databases: (healthcare or health care or hospital \nor health services or health facilities or healthcare providers or healthcare sector) AND (knowledge  \nor education or understanding or awareness or perception) AND (endometriosis or endometrioses  \nor endometrioma or endometriomas) AND (experiences or perspectives or attitudes or views).  \nArticles identified using the search terms were 417 from both databases. There was no duplicated  \narticle; hence, all the articles went through the screening process. The article expender and \navailability of free full text were applied, and there were 222 articles remaining. Since the author  \nincluded only articles with abstracts, four articles were excluded. The articles were screened based  \non the year of publication in the past ten years; 34 articles were excluded. The remaining 184  \narticles were screened  in reference to the language of publication, whereby English was the \npreferred language, peer -reviewed articles; hence, 127 articles were excluded. After remaining  \nwith the 57 articles, the author  reviewed the titles  of the articles one after the other while \nidentifying which ones are relevant to the research question. After this exercise, 47 articles were  \neliminated. The remaining ten articles underwent a thorough assessment for eligibility by reading  \nthrough the abstracts to deter- mine if they answered the research question. Only five articles met  \nthe reader's inclusion criteria and were included in the research. \n\n15 \n \n \n \n476 Articles \n \nCINAHL= 59 \nPUBMED=417 \n \n \n \nFull text available: \n254 articles are excluded. \n \nStudies included in review \n5. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \nFigure 2: Prisma chart (Page, et al., 2021) \n \n \n4.4 Method of Analysis \n \n \nTo identify and understand the research study better, the author used a conventional content  \nanalysis approach to help classify the data. The author read the chosen articles repeatedly in the  \nresults section, one after the other while highlighting similar thoughts and concepts. The author  \nthen identified identical themes, highlighted using different colors as shown in the snip \nrepresentation below, \nIdentification of studies via databases and registers \n \n5 reports were excluded after \nreading the abstracts. \n \nReports assessed for eligibility. \n10 \n \nReports remaining \n218. \nArticles published outside the \n10yrs window-34. \nArticles not in English- 1 \nNot peer reviewed- 126. \nTitles does not answer \nquestion- 47. \nScreening \nAbstract available: \n4 articles excluded. \n \nRecords screened \n222. \nIdentification Included \n\n16 \n \n \nfigure 3, and the whole table in Appendix 3. Similar colored themes were combined to create the  \nmain topics. Different highlighted topics helped the author to categorize the themes differently,  \nyielding four main topics (Hsieh & Shannon, 2005). \n \n \nFigure 3. Snip representation of Data Analysis \n\n\n17 \n \n \n5  Results \n \n \n5.1 Inadequate knowledge \n \n \nPatients reported that health care practitioners displayed insufficient knowledge of endometriosis  \nas a condition, and they tend to ask questions which are not helpful in guiding the patients towards \nearlier diagnosis or practical enough to provide the patient with better management options for  \nendometriosis. Medical staff as well did not feel the need to research more on the causes of pain  \non their patients hence a tendency of dismissing their symptoms. Sometimes the women also felt  \nthat healthcare professionals lacked fundamental knowledge on endometriosis, making them \ndisplay ignorance and lack of interest in finding the exact cause of the symptoms presented by the  \npatients. Some women felt that receiving detailed information from their healthcare providers  \nabout their  condition would  help them  gather sufficient  knowledge on  how to  manage their  \nsymptoms without feeling hopeless (Grundström, Alehagen, Kjølhede, & Berterö, 2017; Pettersson  \n& Berterö, 2020; Grundström, Danell, sköld, & Alehagen, 2020). More training and education on  \nendometriosis ought to be provided to health care professionals as it would improve their \ncompetence in dealing with  patients with  endometriosis making the patients feel  safe, seen, \nheard,and understood (Gouesbet, et al., 2023; Lightbourne, Foley, Dempsey, & Cronin, 2023). \n \n5.2 Medical ‘Myths’ and Ignorance \n \n \nPatients reported receiving wrong diagnoses earlier in their journey with endometriosis before  \nreceiving a correct diagnosis —some of the women mentioned being advised to get pregnant as a  \ncure for endometriosis. The attitude displayed by some of the physicians was that “there was no  \ndiagnosis called menstrual pain” and that the women who expressed themselves in such a way  \nwere, for lack of a better term, seeking attention or somewhat lacking ‘strength’ to withstand the  \npain levels. It was just part of being a woman. Additionally, some women were made to believe that \nmenstrual pain is for every woman to endure and, therefore, shied away from seeking help. In some \nway, they needed to convince their healthcare professionals as they insinuated that their symptoms \nmight be imagined or exaggerated (Grundström, et al., 2017; Pettersson & Berterö, 2020; \nGrundström, et al., 2020). \n\n18 \n \n \n” You have to in some way convince them that it is like this  \nand that (//) They think that you exaggerate, and you need  \nto try hard so that they believe you, because they don’t. You \nexperience that immediately, that they don’t believe you”  \n(Grundström, et al., (2017), pg. 207). \n \nSome patients were told that their pain could be “stress-related” and were advised to seek \npsychiatric help. In trying to find answers to their debilitating pain, they felt dismissed and judged.  \nThey were made to believe that suffering is part of menstruation and, therefore, preferred not to  \nspeak up about how endometriosis pain affected their lives (Gouesbet, et al., 2023). \n \n5.3 Availability and Quality of care \n \n \nPatients reported telling their stories to different medical professionals during their numerous visits. \nThis was frustrating and draining as it resulted in a lack of continuity in care. It also felt like they  \nwere putting parts of themselves out to different people who felt unsafe. Undergoing routine  \ngynecological examinations from time to time made the women feel that their privacy was \nconstantly being invaded. It felt as if they had no option other than to comply with the mentally  \ntorturing procedures. They also feared that a more severe condition could be complex to detect if  \nthey didn't. Patients also indicated financial constraints that came with the management of \nendometriosis (Grundström, et al., 2017; Grundström, et al., 2020; Lightbourne, et al., 2023). \n \nSome patients mention being referred to other specialists, such as gastroenterologists and \npsychiatrists, before being examined by a gynecologist. This caused them to spend many years  \nconstantly worrying about what could be the problem, hence affecting the quality of their lives  \n(Pettersson & Berterö, 2020). Additionally, Grundström et al. (2020) found that patients had to  \nconstantly make follow-up calls to schedule their appointments, with a waiting time of up to a year \nleading to late diagnosis. Gouesbet et al. (2023) highlighted the need for developing a \nmultidisciplinary approach and strengthening the coordination between various healthcare \nproviders in maintaining a shared medical history, as it would be helpful in early diagnosis of  \nendometriosis, hence considering early management options. \n\n19 \n \n \n5.4 Lack of support \n \n \nMost researchers found this area lacking. Patients experienced inadequate support from health care \nprofessionals socially, mentally, emotionally, and psychologically. Grundström et al. (2020) found  \nout that women living with endometriosis had encounters with arrogant healthcare physicians,  \nmaking them develop fear and lack of trust for the medical staff. This led to a phobia of health care \ncenters, hence delayed diagnosis. Additionally, patients reported being treated as objects and not  \nhumans, hence feelings of low self-esteem, anxiety, loneliness, and despair. Patients deeply desired \nto be listened to, believed, and allowed to express themselves fully without being judged. There  \nwere, however, encounters with healthcare professionals who portrayed a lack of interest in the  \npatient’s situation (Grundström, et al., 2017; Grundström, et al., 2020). \n \nPatients did not feel listened to or taken seriously by healthcare professionals even after raising  \nconcerns during consultations on how the condition had affected their career development and life. \nThey desired a care plan curated for their specific needs, and continuous follow-up would build the \npatient-staff relationship, hence alleviating the challenges incurred in their endometriosis journey  \n(Grundström et al., 2017; Lightbourne et al., 2023). Gouesbet et al. (2023) also found that when  \ncaregivers listen and show empathy to their patients, they greatly impact their emotional and  \npsychological well -being as the patients feel heard, guaranteeing patient intimacy. Pettersson &  \nBerterö (2020) add that showing empathy while incorporating a professional and competent \napproach resulted in the organized and holistic care of individual patient needs. \n\n20 \n \n \n6 Discussion \n \n \nEndometriosis patients' experiences with healthcare providers are complicated and miscellaneous.  \nWhile some may be positive, most patients have expressed their disappointments and frustrations  \nin dealing with healthcare professionals. This underscores the importance of the studies reviewed  \nin enhancing our understanding and improving healthcare services for women with endometriosis.  \nMany endometriosis patients reported feeling misunderstood and dismissed by healthcare \nprofessionals. They expressed frustration with the lack of knowledge and awareness about the  \ncondition among healthcare providers, leading to delayed diagnosis and improper management of  \ntheir symptoms. In a study by Young, Fisher, & Krikman (2017), it was found that some doctors  \ndeclared endometriosis to be resulting from mental disorders and further considered themselves  \ninadequately equipped with knowledge to care for endometriosis patients psychosocially. This  \nuncertainty and a lack of competence makes it hard to diagnose correctly or provide the intended  \ncare to a patient. \n \nMoreover, this research highlights the prevalence of myths and misconceptions about \nendometriosis among healthcare professionals. When not addressed, these misconceptions can  \nfoster dismissive attitudes or trivialization of patients' symptoms, thereby significantly \ncompromising the quality of care. The findings also  emphasize the crucial role of healthcare \nprofessionals in psychological and emotional endometriosis care while dealing with the \ndebilitating nature of endometriosis. A positive and supportive relationship with a healthcare  \nprofessional was revealed to be vital.  Dinh, Flaxman, Shea, & Singh (2020), in their study on  \nendometriosis on the internet, found that most websites contained misinformation about \nendometriosis while others  exaggerated the risk  of cancer.  Healthcare professionals ought to \nprovide accurate information and direct the patients to evidence-based materials to read more  \nabout the condition. \n \nIn addition to the psychological and physical effects of endometriosis, it has been reported to cause \nfinancial burdens to individuals and their families. Much money goes into getting the right diagnosis, \npurchasing different medications, and even In Vitro Fertilization (IVF) treatment options. Research  \nfunding from national funding agencies such as the National Institute of Health (NIH) is limited. This \nmakes it difficult to make substantial progress in finding a cure for this chronic condition. Adequate \nfunds for endometriosis research would improve the awareness of the disease, eliminate knowledge \n\n21 \n \n \ngaps, achieve early diagnoses, provide a variety of treatment options, and consequently improve  \nthe quality of life of its victims. (Ellis, Munro, & Clarke, 2022). \n \nFurthermore, the absence of individual -centered treatment plans and the reliance on standard  \nprotocols emerged as common concerns among endometriosis patients. This highlighted the need  \nfor personalized and comprehensive care that accounted for the variability and impact of \nsymptoms. A study by Mikesell & Bontempo (2022) revealed that while endometriosis patients \noften face challenges when interacting with healthcare professionals, there is a clear path for \nimprovement when trust and interconnectedness are involved. Inadequate knowledge, delays in  \ndiagnosis, and a lack of support contribute to a negative experience for many patients. However,  \nwith improved education for healthcare providers and a greater emphasis on providing \ncomprehensive information, dispelling myths, and offering emotional support, the quality of care  \nfor patients with endometriosis can be significantly enhanced. \n \nIn a study done in the UK, patients reported misdiagnosis and dismissal of their symptoms because  \nof language barriers or miscommunication. Women of different backgrounds for whom English was \nnot a first language had difficulties explaining their symptoms to doctors. Women suffering from  \nendometriosis tend to express their situation in metaphors. However, they felt that healthcare  \nprofessionals did not understand them (Bullo & Weckesser, 2021). Healthcare professionals ought  \nto familiarize themselves with the common phrases and similes used by women living with \nendometriosis in describing their chronic pain to improve the quality of care. When necessary, a  \nlanguage interpreter can be involved to ensure a patient gets the quality of care they deserve. \n \nImplications to nursing practice \n \n \nNurses are involved in the primary care of patients with endometriosis. The condition demands  \nlengthy hospital stays and numerous examinations, which can overwhelm the individual. Patient  \neducation by providing evidence-based knowledge about the condition will help to shift the \nmentality or myths surrounding the condition. This will comfort the patient by creating a safe  \nenvironment for them to express themselves, hence improving the nurse -patient relationship. It is \nalso crucial that the nurses have adequate knowledge of the condition to enhance their \ncompetence whendealing with endometriosis patients (Bach, Risoer, Forman, & Seibaek, 2016). \n\n22 \n \n \n7 Ethical considerations \n \n \nEthics are guiding norms employed in research that define what is unacceptable or acceptable de - \npending on the study, the parties involved, and its relevance to society. Ethics promote honesty and \ntruth while presenting information collected from different sources (Resnik, 2020). The reviewed  \narticles were evaluated using a critical appraisal tool developed by Hawker, Payne, Kerr, Hardey, &  \nPowell (2002), attached in Appendix 2. The quality of the articles was evaluated in terms of abstract \nand title, introduction and aims, methods and data, sampling, data analysis, ethics and bias, results, \nand transferability of generalizability and implications and usefulness. Articles used had a total of  \nabove/equal to 32 points. \n \nThis study was conducted with utmost transparency, following the ethical guidelines. The re - \nsearcher meticulously followed the procedure for conducting a literature review, including the se - \nlection of a review topic, searching for reliable sources from electronically accessible databases, and \nanalyzing the findings in a fair and unbiased manner. The articles chosen were published in four  \ndifferent countries to identify the similarities of experiences cutting across. The articles were from  \n2014–2024 to ensure current and valid data. Authors of the chosen articles have credited their  \ncollaborators and obtained informed consent from relevant authorities to avoid conflicting \ninterests. The tools and method of data analysis have been shared, making the article a reliable  \nsource. If the described procedure is implemented, it will produce similar results (Resnik, 2020). \n \nThe study was done in respect to the JAMK University of Applied Sciences ethical guidelines, with  \nthe research articles selection being from CINAHL and PubMed databases, which are free and avail- \nable to all JAMK students, hence a limitation in transferability of the findings (JAMK, 2018). \nPlagiarism was avoided through in-text citations and referencing the respective authors of \ndifferent articles. The articles selected were published in 3 different countries; however, there  \nneeds to be proof that they could represent the whole world, hence a limitation of the data. Some  \narticles that may have benefited the study were not freely available to the author, thus limiting  \ndata transferability. These limitations are openly acknowledged, demonstrating the research's  \ncommitment to transparency and honesty. \n\n23 \n \n \n8 Conclusion \n \n \nEndometriosis awareness among healthcare professionals still needs more attention. Healthcare  \nproviders ought to be conscious of their role in the lives of women living with endometriosis. A  \nmulti-professional approach to endometriosis care would ensure holistic care and, consequently,  \npositive experiences. Factors such as race, language, age, and culture should also be considered to  \nensure patient-tailored care among endometriosis patients. \n \nThe Internet has been shown to provide support to endometriosis patients both psychologically and \nemotionally. Online communities like Facebook, national websites, TikTok, Instagram, and women's \ntrust organizations have allowed patients to share their symptoms and journeys, helping each other \nknow they are not alone. It is however important that patients understand that their journeys are  \ndifferent and that the condition may display varying symptoms from one patient to another. \n \nThe author recommends future research on psychotherapy options for endometriosis patients as a \nform of managing the condition's associated  symptoms. There is also a need for research on how  \nimmigrants living with endometriosis cope with the condition in Finland and if language barrier  \ncould be a major hinderance to receiving satisfactory care. \n\n24 \n \n \nReferences \n \nAbraham, J. M., & V., R. (2024). Emotions of endometriosis in clinical encounters: An analysis of \nwomen's experiences of health care. Journal of Evaluation in Clinical Practice, \nhttps://doi.org/10.1111/jep.13974. \n \nAllaire, C., Bedaiwy, M. A., & Yong, P. J. (2023). 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Endometriosis classification, staging and reporting systems: a review on the road to \na universally accepted endometriosis classification. Human Reproduction Open, \nhttps://doi.org/10.1093/hropen/hoab025. \n\n28 \n \n \nWeckesser, A., & Bullo, S. (2024, Apr 24). EndoZone. Retrieved from EndoZone: \nhttps://www.endozone.com.au/research/164 \n \nYoung, K., Fisher, J., & Krikman, M. (2017). Clinicians’ perceptions of women's experiences of \nendometriosis and of psychosocial care for endometriosis. Journal of Obstetrics and \nGynaecology, http://dx.doi.org/10.1111/ajo.12571. \n \nZanden, M. v., Kok, L. d., Nelen, W. L., D. D., & Nap, A. W. (2021). Strengths and weaknesses in the \ndiagnostic process of endometriosis from the patients’ perspective: a focus group study. \nDiagnosis, https://doi.org/10.1515/dx-2021-0043. \n\n29 \n \n \nAppendices \n \nAppendix 1. Summary of included articles \n \n \n \nAuthor Title Aim/Purpose Participants \nMethodology \nand Anal- ysis Results \nCountry of \nOrigin \nGouesbet et \nal., (2023) \nPatients’ Perspec‐ \ntives on How to \nImprove Endome- \ntriosis Care: A Large \nQualitative Study \nWithin the \nComPaRe-Endo- \nmetriosis e-Co- \nhort. \nCapturing ideas \nto im- prove \nendo- metriosis \ncare from the \npa- \ntients’ per‐ \nspectives \n1000 adult \npatients \nFree text open-\nended questions \nana- lysed using \nqualitative \nthematic anal- \nysis using an \ninductive ap- \nproach. \n5 main themes \ni.e Train caregiv- ers to \ndevelop their \nknowledge on the \ndisease. Provide better \nmanagement of daily \npain and pain attacks. \nTake patien- treported \nsymp- toms seriously. \nStandardize di- \nagnostic pro- cesses to \nim- prove early \ndetection Have \ncaregivers listen more \nto the pa- tients \nFrance \nGrundström et \nal., (2020) \n“A protracted \nstruggle” – \nA qualitative blog \nstudy of \nendometriosis \nhealthcare \nexperiences in \nSweden \nThe aim of this \nstudy was to \nidentify and \ndescribe \nendometriosis \nhealthcare ex- \nperiences based \non af- fected \nindivid- uals’ \nblog posts. \nSixteen blogs \nwritten \nbetween \n2008 and \n2019 by peo- \nple aged 22- \n34 years \nThe analysis was \ncon- ducted \nusing thematic \nanal- ysis \naccording to \nBraun and \nClarke. \nThe results are \npresented un- der one \nmain \ntheme, “A pro‐ tracted \nstrug- gle”, and two \nsubthemes, “The \nresponse plays a \nsignifi- cant role” and \n“The \nvalue of compe- \ntence”. \nSweden \n\n30 \n \nLightbourne et \nal., (2023) \nLiving With Endo- \nmetriosis: A Re- \nflexive \nThematic Analysis \nExamining \nWomen’s \nExperiences with \nthe Irish Healthcare \nServices \nThe study aimed \nto ex- plore the \nper- ceptions \nand experiences \nof women with \nendometriosis \nregarding the \ndiagnosis, sup- \nport, and \ntreatment op- \ntions available \nTwenty par- \nticipants, \nwomen aged \n18 and over \nwith a diag- \nnosis of \nendometrio- \nsis and expe- \nrience of the \nIrish \nhealthcare \nsystem \nA qualitative \nstudy,Data was \nanalysed using \nreflexive \nthematic anal- \nysis. \n5 themes were \nidentified: ‘dis‐ missive \natti- tudes normalis- \ning severe pain’, \n‘inadequate \nhealth system’, ‘the \nimpact of delayed \ndiagno- ses’, \n‘lack of educa‐ tion \nand aware- ness’ and \n‘navi‐ gating \nignorance, ta- boo, and \nsocie- tal views’ \nIreland \nPettersson & \nBer- terö \n(2020) \nHow Women with \nEndometriosis Ex- \nperience Health \nCare Encounters \nThe aim of this \nmeta-synthe- sis \nwas to syn- \nthesize and in- \nterpret the \navailable qual- \nitative studies to \nincrease our \nunder- standing \nand extend \nknowledge \nabout how \nwomen with \nendometriosis \nexperience \nhealth care \nencounters. \n370 women \nwith diag- \nnosed endo- \nmetriosis, 16–\n78 years of \nage. \nLiterature \nreview \n3 themes were \nidentified: In- \nsufficiency \nknowledge,Trivi- \nalizing-just a women's \nissue and Compe- \ntency promotes health \nSweden \nGrundström, \net al., (2017) \nThe double-edged \nexperience of \nhealthcare en- \ncounters among \nwomen with en- \ndometriosis: A \nqualitative study \nTo identify and \ndescribe the \nexperience of \nhealthcare en- \ncounters among \nwomen with \nendome- triosis. \n9 women \naged 23–55, \nwith a lapa- \nroscopy-con- \nfirmed diag- \nnosis of \nendometrio- \nsis \nA qualitative, \ninterpretive, \nphenomeno- \nlogical ap- \nproach was \nused \n2 themes: Being \ntreated with ig- \nnorance and be- ing \nacknowl- edged. \nSweden \n\n31 \n \n \nAppendix 2. Critical appraisal of the selected articles \n \n \n \n \n \n \nAuthor \n \n \n \n1 abst- \nract \n/Title \n2 In- \ntro- \nduc- \ntion \nand \naims \n \n \n3 \nmetho\nds \nand \ndata \n \n \n \n4 \nsamp- \nling \n \n \n5 \nData \nana- \nlysis \n \n \n6 Et- \nhics \nand \nbias \n \n \n \n \n7 Re- \nsults \n \n \n8 Transfe- \nrability or \ngeneraliza- \nbility \n \n9 Impli- \ncations \nand \nuseful- \nness \n \n \n \n \n \nTotal \n \nGouesbet et al., \n(2023) \n \n4 \n \n4 \n \n4 \n \n3 \n \n4 \n \n4 \n \n4 \n \n4 \n \n4 \n \n35 \nGrundström et \nal., (2020) \n \n4 \n \n4 \n \n4 \n \n4 \n \n4 \n \n3 \n \n4 \n \n3 \n \n4 \n \n34 \nLightbourne et \nal., (2023) \n \n4 \n \n4 \n \n4 \n \n3 \n \n3 \n \n4 \n \n3 \n \n3 \n \n4 \n \n32 \nPettersson & Ber- \nterö (2020) \n \n4 \n \n4 \n \n4 \n \n4 \n \n4 \n \n4 \n \n4 \n \n4 \n \n4 \n \n36 \n \nGrundström, et \nal., (2017) \n \n4 \n \n4 \n \n4 \n \n4 \n \n4 \n \n4 \n \n4 \n \n3 \n \n4 \n \n35 \n\n32 \n \nAppendix 3. Content analysis of the articles \n \nAUTHOR ANALYSIS SUBTOPICS MAIN TOPICS \nGouesbet et al., (2023) \nBetter training of caregivers on the disease Inadequate knowledge \nHCPs Knowledge on \nEndometriosis \nProviding more explanation about the disease to patients Patient Education \nDeveloping research on endometriosis Inadequate knowledge \nGrundström et al., (2020) \nHCPs lack knowledge of Endometriosis Inadequate knowledge \nLack of competence by asking inadequate questions or \nconveying inaccurate information Patient Education \nHCPs who could convey useful information and knowledge \ncould change women's lives Patient Education \nLightbourne et al., (2023) \nLack of support and information regarding symptom \nmanagement Patient Education \nAbsence of expert surgeons Inadequate knowledge \nMore education and awareness for medical professionals to \nimprove diagnosis Inadequate knowledge \nPettersson & Berterö (2020) \nPhysicians lacked knowledge of the disease, which led to \nthe diagnosis being delayed and that they did not receive \nadequate treatment Inadequate knowledge \nPhysicians usually did not search for some other underlying \ncause of the pain Inadequate knowledge \n  \n     \nGouesbet et al., (2023) \nTaking patient-reported  symptoms seriously Patient-staff Relationship \nMedical 'myths' & Ignorance \nTelling patients that their pain is psychological or stress \nrelated Patient-staff Relationship \nBelieving that it is normal to suffer during menstruation Myths and Misconcemptions \nLightbourne et al., (2023) \nFeeling of being dismissed at both pre-diagnosis and post-\ndiagnosis Patient-staff Relationship \nNormalisation of severe pain Myths and Misconcemptions \nMinimisation of endometriosis Myths and Misconcemptions \n\n33 \n \nGrundström et al., (2020) \nHCPs not wanting to prescribe painkillers Patient-staff Relationship \nMisdiagnosed with different disorders such as anxiety, \nirritable bowel syndrome, premenstrual syndrome or \nsexually transmittes diseases Diagnosis \nContinually misinterpreted, normalised and trivialised \nendometriosis symptoms Diagnosis \ntheir problems were psychosomatic and that they should \nseek psychiatric care Psychological \nHCPs had recommended pregnancy as the best cure for \nendometriosis Psychological \nPettersson & Berterö (2020) \nThe physicians meant/felt that the symptoms were part of \nbeing a woman Psychological \nSome women recalled that doctors recommended \npregnancy as a treatment Myths and Misconcemptions \nPhysicians’ attitude was that women exaggerated or \nimagined their symptoms, like having a form of ‘‘fantasy \npain,’’ or had low pain thresholds Psychological \nThe physicians could argue that there was no diagnosis \ncalled menstrual pain, and that it was only stupid women \nwho expressed themselves like this Psychological \nYoung women or teenage girls were too young to have \nendometriosis Psychological \nThe women could receive the recommendation to remove \nthe uterus, even though they were only in their twenties Psychological \n        \nGouesbet et al., (2023) \nProposing relevant medical exams for early diagnosis Diagnosis \nAvailability & Quality of care \nInitiating screening for earlier detection Diagnosis \nDeveloping a more multidisciplinary approach in care Quality of care \nProviding more frequent and better organized medical \nfollow up Quality of care \nDeveloping a more holistic approach in care Diagnosis \nStrengthening the shared medical record system Quality of care \n\n34 \n \nLightbourne et al., (2023) \nParticipants had to retell their story many times to various \nmedical practitioners Quality of care \nWomen with endometriosis navigate inadequate services \nand try to avoid delays Diagnosis \nFinancial costs borne by the participants in an attempt to \nmanage their condition Financial \nGrundström et al., (2020) \nHaving to fight and badger to get the telephone calls, \nreferrals and examinations they had been promised Quality of care \nStruggle with the lack of continuity in their contact with \nHCPs Quality of care \nWork towards adapting the care to the individuals’ unique \nneeds Patient-staff Relationship \nPettersson & Berterö (2020) \nWomen were referred to specialists such as psychiatrists or \ngastroenterologists before finally getting to meet a \ngynecologist Quality of care \n        \nGouesbet et al., (2023) \nMaking caregivers listen more to patients Emotional approach \nLack of Support \nIncreasing empathy towards patients Emotional approach \nInitiating follow-up and monitoring Patient-staff relationship \nGuaranteeing patient intimacy Emotional approach \nImproving society's awareness and recognition of the \ndisease Psychological \nBetter recognition of the intensity \nof their pain by physicians, easier access to pain centers, \nrelief through effective treatments, and the help of \nalternative Inadequate knowledge \nLightbourne et al., (2023) \nNot feeling listened to or taken seriously Psychological \nThis concern regarding career impact was shared by a \nnumber of participants Psychological \nGrundström, et al., (2020) \nFelling seen and confirmed Emotional approach \nInhuman treatment and not having their rights to proper \ncare respected Psychological \nReplace arrogant HCPs with hopefully better ones. Psychological \n\n35 \n \nSome HCPs had even called them drug addicts, which they \nfound offensive and degrading. Psychological \nFeelings of loneliness, violation and disbelief Emotional approach \nLow self-esteem, low self-confidence and feelings of \nanxiety, resignation and despair. Emotional approach \nLack of trust and belief in HCPs had led to a phobia of \nhospitals Psychological \nBeing seen as an individual and not as a body or an object \nwas a key factor for a positive healthcare experience Patient-staff relationship \nCounsellors who could support them with the emotional \nconsequences of the disease Emotional approach \nPettersson & Berterö (2020) \nThere were also physicians who in a more brutal way \nshowed their lack of interest Psychological \nEquip physicians with the skills to acknowledge and \nincorporate women’s knowledge of their bodies within the \nmedical encounters Multidisciplinary approach \nShowing empathy and adopting a professional and \ncompetent approach Emotional approach \n      \nGrundström, et al., (2017) \nfelt mentally exposed Psychological \nfelt as if they were alone in the world with these symptoms Psychological \nencountered the attitude that they exaggerated or \nimagined their symptoms or had low pain threshholds Psychological \nexposed in a physical way Psychological \nHCPs were focused on finding an 'easy explanation' Psychological \nHCPs resorted to normalising and trivialising the problems Psychological \nWomen were told that menstrual pain was normal for every \nwoman to endure Myths and misconceptions \nWomen perceived the HCPs as distant and nonchalant Emotional approach \nHCPs lacked basic knowledge about endometriosis Inadequate knowledge \nFelt confirmed and visible Psychological \nFeeling of being listened to and being believed, without \nbeing judged Psychological \n\n36 \n \nhumorous HCPs with good people skills Psychological \nHCPs could convey useful information Patient-staff relationship \nwomen had to struggle to expose the most private parts of \ntheir lives to many HCPs Psychological \n\n37","source_license":"CC0","license_restricted":false}