Background: Endometriosis is an estrogen-dependent disease which means that the uterine mucosa grows outside the uterine cavity. The disease causes women' pain and affects the quality of life and it takes an average of five to seven years to get the diagnosis established. Aim: The aim of this study was to illustrate women's exeperiences of living with endometriosis. Method: This is a literature study where method to contribute to evidence-based nursing based on analysis of qualitative research was used. Results: Findings in the study showed that women with endometriosis experienced limitations in their daily life. Pain was the most described symptom and women experienced lack of knowledge of themselves and by their surroundings. They risked being misstrusted because of normalization of the symptoms. The women developed strategies to take back control over their lives which helped them to master the disease. Conclusion: In order to provide advice and support, the nurse needs increased knowledge about endometriosis and how it affects the women's lives. It would also reduce the time of delayed diagnosis. / Kvinnor som lever med endometrios kan komma att behöva strukturera om sina liv då deras vardag begränsas. Somliga kvinnorna får inte gehör av den sociala omkretsen och hälso- och sjukvården för de symtom de upplever. För att återfå kontroll över livet utvecklar kvinnorna strategier i hopp om att bemästra sjukdomen. Denna litteraturstudie belyser kvinnors upplevelser av att leva med endometrios. Var tionde kvinna i fertil ålder drabbas av endometrios och sjukdomen är förknippad med sänkt livskvalitet där både kroppslig och psykisk belastning förekommer. I resultatet framkommer att det råder kunskapsluckor om endometrios hos både kvinnan och hälso- och sjukvården. Kvinnorna riskerar att inte bli trodda på då sjukdomen för andra inte är visuellt synlig. De symtomen kvinnan upplever och uttrycker sig om normaliseras i somliga fall av henne själv och hennes omgivning, då symtomen främst syftar till smärta i samband med menstruation. Kunskapsluckor i relation med normalisering av symtomen kan vara en orsak till försening av diagnos och kvinnan utsätts för ett långt vårdförlopp och försämrad livskvalitet. Förmågan att arbeta påverkas och kvinnan kan komma att vara i behov av vila och återhämtning. Ökad frånvaro leder till att kvinnan oroas över att förlora arbetet, då arbetsgivare och kollegor inte alltid tror på de symtom de beskriver. Även samlivet påverkas. På grund av försämrad sexuell funktion och smärtupplevelser vid samlag undviker kvinnor relationer. Kvinnorna oroas över sin fertilitet och risken för infertilitet i framtiden och de kan komma att bli lämnade av sin partner på grund av diagnosen endometrios eller infertilitet. Endometrios kan få kvinnan att känna sig mindre kvinnlig.  Med hjälp av utvecklade strategier återfås kontroll över vardagen. Strategierna ses som styrkande och kvinnan blir mer lyhörd på sin kropp med ökar sitt ansvar för den egna hälsan. Att bemästra sjukdomen hjälper kvinnorna att se på sina kroppar utifrån positiva vinklar och upplevelserna kunde de dela med sig av till andra.

The signs and symptoms of many diseases remain poorly characterized. For these types of conditions, the constellation of symptoms experienced by patients are not adequately described, nor are the signs and symptoms specific to the condition well-defined. These features define an enigmatic disease. One of the most prevalent yet enigmatic conditions today is endometriosis, described as when endometrial-like cells grow outside of the uterus. Largely because of the wide, unexplained variation in patient symptoms, beyond the surgical definition of the disease, and the lack of noninvasive diagnostic biomarkers, there exists a significant delay in diagnosis. Better characterization of enigmatic diseases like endometriosis should lead us towards more accurate and earlier disease diagnosis. In informatics, characterizing a condition is phenotyping. For a prevalent condition for which the the symptomatic experience is highly heterogeneous, this process involves the use of data-driven methods to describe group-specific patterns to better explain this heterogeneity. Traditional data sources for phenotyping include observational health data like electronic health records (EHR) and administrative claims. Collecting data longitudinally and designing data collection so it is relevant to the patient experience may provide a complementary characterization of the condition useful for phenotyping. Alternative data sources such as patient-generated health data from self-tracking devices may elucidate, over time, a wider range of signs and symptoms of the disease at a more granular level than traditional phenotyping data sources. Patient-generated health data, however, remains an unexplored data source for disease phenotyping of enigmatic conditions like endometriosis. This thesis explores the following research questions: 1) To what extent are traditional data sources representative of endometriosis? 2) How should researchers design a self-tracking app for endometriosis that is engaging for the user and supports phenotyping at scale? 3) What computational methods can help phenotype endometriosis at scale from self-tracking data, and 4) can the disease be detected earlier with a validated EHR phenotype? First, the disease dimensions relevant to endometriosis are elicited from both traditional observational health data sources and from patients directly. Second, using these dimensions, a self-tracking app for endometriosis is designed to be both engaging to the user and to facilitate disease phenotyping across a patient population. The app is then developed using a standard software framework, and patients are recruited to use the self-tracking app. Third, using self-tracking data and traditional phenotyping data sources, such as claims and EHRs, computational methods for identifying subtypes of the disease and for early disease detection are explored. This thesis contributes the following: 1) Using over 1,400 patient records for manual chart review, a validated, reproducible, and portable endometriosis cohort definition for selecting patients from both claims and EHR data with a sensitivity (recall) of 70%, specificity of 93%, and positive predictive value (precision) of 85% is developed. Using this definition, a characterization of the disease to help with early disease detection is elucidated using over two million endometriosis patients across institutions and settings. 2) A self-tracking app (Phendo) that supports further characterization of the disease at scale has been designed and developed and is currently used by over 6,000 endometriosis patients from over 70 countries. 3) Data from this app has been used to identify three novel subtypes of the disease that are clinically meaningful, interpretable, and correlate with what is known about the condition from a gold-standard clinical survey. 4) Leveraging the cohort definition characterization for earlier disease detection, a well-performing prediction model, with area under the curve of 68.6%, for early identification of endometriosis has been trained and tested across a network of observational health databases.

This paper contributes to a growing body of literature on women with endometriosis, a gynecological condition in which tissue similar to the endometrium, or lining of the uterus which is shed during menses, grows elsewhere in the body. Despite a growing understanding of the disease in medical literature, it is still not well known by the general population or fully understood by the medical community. The paper incorporates a biomedical understanding with Emma Whelan’s idea of these women as an epistemological community, autoethnography, and narratives of sufferers in order to understand how women discuss, experience, and form communities around it. It draws upon individual interviews, a focus group, and readings of medical and social science literature and found that women of dissimilar socioeconomic backgrounds approached and discussed the disease distinctively from one another with three phases of coping with the illness: the discovery, quest, and revelation.

La Endometriosis es una situación muy frecuente en nuestro medio. Para resolverla disponemos actualmente de diferentes alternativas diagnosticas y terapéuticas. Y evaluamos si el diagnostico ecográfico precede al diagnostico laparoscopico en mujeres con diagnostico de infertilidad y posteriormente luego de su tratamiento laparoscopico el porcentaje de éxito de su fertilidad Objetivo: Definir la utilidad de la ecografía transvaginal y su correlación con el diagnostico laparoscópico en pacientes con infertilidad y que fueron llevados a cirugía en el Hospital Nacional Arzobispo Loayza / he Endometriosis is a very frequent situation in our means. In order to solve we have it different alternatives at the moment you diagnose and therapeutic. And we evaluated if I diagnose ecográfico precedes to I diagnose laparoscopic in women with I later diagnose of infertility and after its laparoscopic treatment the percentage of success of its. Objective fertility: To define the utility of the transvaginal ecografía and its correlation with I diagnose laparoscopic in patients with infertility and who were taken to surgery in the National Hospital Loayza

Thesis (Ph. D.)--University of Missouri--Columbia, 2001. / "May 2001." Typescript. Vita. Includes bibliographical references (leaves 180-198). Also available on the Internet.

Bakgrund: Endometrios är en kronisk gynekologisk sjukdom med okänd etiologi som drabbar 10 % av kvinnor i fertil ålder och som har en djupgående påverkan på samtliga delar av kvinnors välmående. Dessa kvinnor blir ofta misstrodda och avfärdade av vårdpersonal när de söker vård för sjukdomen och deras smärtproblematik anses vara ”normal”. Feminism kan användas som ett verktyg för att undersöka denna företeelse. Syfte: Att beskriva hur kvinnor med endometrios upplever mötet med vårdpersonal. Metod: En kvalitativ innehållsanalys gjordes av sex stycken bloggar skrivna av kvinnor med endometrios för att ta del av deras upplevelser och erfarenheter. Resultat: Totalt återfanns tre teman; att bli experten, det dynamiska mötet och det statiska mötet. Under dessa återfanns totalt fem subteman som återger olika aspekter av mötet mellan kvinnorna och vårdpersonalen. Slutsats: Den omfattande misstro kvinnor med endometrios upplever inom vården kan förklaras av den underordnade position kvinnor har i samhället. En konsekvens av detta blir att dessa kvinnor möts i gemenskaper och formar ett systraskap. Klinisk betydelse: Sjuksköterskor kommer ofta i kontakt med dessa kvinnor oavsett klinisk placering. Genom ökad kunskap om sjukdomen såväl som strukturella faktorer skapas möjligheter för att hjälpa denna patientgrupp få den vård de har rätt till. / Background: Endometriosis is a chronic gynecological disease with unknown aetiology which affects 10 % of fertile women and it has a profound effect on each part of women’s wellbeing. These women are often subjected to misbelief and dismission from healthcare personnel when they seek help for their pain related symptoms which are often considered “normal”. Feminism can be used as a tool to investigate these problematic issues. Aim: To investigate how women with endometriosis experience the encounter with healthcare personnel. Method: A qualitative content analysis based on six blogs was carried out with the intention to describe womens’ experiences. Result: A total of three themes were found; becoming the expert, the dynamic encounter and the static encounter. Related to these themes, a total of five subthemes were found that described different aspects of the encounter between the women and healthcare personnel. Conclusion: The widespread mistrust that women with endometriosis experience within the healthcare system can be explained by the subordinated position of women in society. This results in the gathering of women in communities as a type of sisterhood. Clinical implication: Nurses frequently come in contact with these women regardless of clinical placement. By improving their knowledge about the disease as well as structural factors, nurses are in position to help these patients receive the healthcare they are entitled to.

Bakgrund: Endometrios är en vanligt förekommande gynekologisk sjukdom som ofta förorsakar lidande. Trots det får drabbade kvinnor ofta vänta länge på diagnos, rätt vård och behandling. Sjukdomen har en komplex sjukdomsbild som skiljer sig åt och på olika sätt påverkar kvinnornas liv. Syfte: Syftet var att beskriva kvinnors upplevelse av att leva med endometrios utifrån sjukdomslidande, vårdlidande och livslidande. Metod: Allmän litteraturöversikt där tio vetenskapliga artiklar analyserades med Katie Erikssons teorier om sjukdomslidande, vårdlidande och livslidande som bedömningsgrund. Resultat: Endometrios påverkade kvinnornas liv på flera sätt. Kvinnorna led ofta av intensiv smärta samt andra symtom och tecken vilka ofta bagatelliserades av vårdgivare som många gånger ansåg att kvinnornas symtom var inbillade eller av psykosomatisk karaktär. Vidare påverkade sjukdomen kvinnornas relationer och sociala liv då de inte sällan bemöttes med misstro från sin omgivning Slutsats: Vårdgivare behöver mer kunskap om endometrios och dess sjukdomsbild för att förhindra att kvinnornas symtom blir trivialiserade och negligerade. Bemötandet av kvinnorna behöver förbättras och generera i tidigare diagnostisering och behandling. Ett emotionellt stöd från både omgivning och vårdgivare är en viktig faktor för att bekräfta kvinnorna och deras upplevelser av sjukdomen. Klinisk betydelse: Det är av klinisk betydelse att vårdgivare har förståelse för kvinnors upplevelse av att leva med endometrios för att omvårdnaden ska kunna formas ur ett helhetsperspektiv. En ökad förståelse kan leda till ett bättre bemötande och kan således resultera i att kvinnorna får bättre stöd samt tidigare diagnostisering och behandling. / Background: Endometriosis is a common gynecological disease which in many cases can cause a great deal of suffering. Despite this fact many women have to wait a long time to get a proper diagnosis, the right medical care and treatment. The disease has a complex clinical picture that differs and which in many different ways have an impact on women’s lives. Aim: The aim was to describe women’s experiences living with endometriosis by looking at how women suffer due to the disease, from the points of disease-suffering, care-suffering and life-suffering. Method: General literature review where ten scientific articles were analysed based on the theory on suffering by Katie Eriksson as a criterion of the categories, disease-suffering, caresuffering and life-suffering. Result: Endometriosis impacted women’s lives in many different aspects. Women often suffered from intense pain and other symptoms and signs, which were often dismissed by caregivers. The disease also impacted women’s relationships as well as their social life in the sense that they often were treated with distrust from immediate surroundings. Conclusion: Caregivers need to have a deeper knowledge and understanding of endometriosis and its clinical picture to prevent women’s symptoms from being trivialized and neglected. The caregivers’ attitudes in the encounter with women have to be better and generate an earlier diagnosis and treatment. Emotional support from both caregivers and their immediate surroundings is important to substantiate women and their experiences of the disease. Clinical importance: It is of clinical significance that caregivers have an understanding for women’s experience of living with endometriosis. This in order for the care to be given from a broader perspective looking at the women’s life situation.

Endometrios är en kronisk sjukdom som drabbar cirka 10 procent av alla fertila kvinnor. Världen över beräknas 176 miljoner kvinnor vara drabbade av sjukdomen. Endometrios medför ett stort lidande då sjukdomen påverkar det fysiska, psykiska, sociala samt sexuella välbefinnandet. Det krävs god kunskap om hur kvinnorna upplever sitt tillstånd och sin kropp för att sjuksköterskan på bästa sätt ska kunna främja kvinnornas hälsa och ge en god vård. Syftet med studien var att beskriva kvinnors upplevelser av att leva med endometrios. Studien genomfördes som en litteraturstudie och bestod av 12 vetenskapliga artiklar varav åtta kvalitativa och fyra kvantitativa. De vetenskapliga artiklarna var genomförda i England (2), Norge, Nya Zeeland (2), Danmark, Österrike, Australien (3), Iran och USA mellan åren 2004-2014. Resultatet visade att kvinnorna upplevde stora brister i vården vilket medförde ett stort vårdlidande. Sjukdomen påverkade även livssituationen negativt vilket gav upphov till livslidande samt sjukdomslidande. Trots att endometrios är en av de vanligaste sjukdomarna i världen finns det stora kunskapsbrister och oförståelse inom vården och bland allmänheten. En slutsats var att personer som arbetar inom sjukvården bör bli bättre på att uppmärksamma kvinnor med endometrios och tro på deras sjukdomsupplevelser. Det behövs mer kunskap om sjukdomen bland vårdpersonal samt bland allmänhet. Endometrios och sjukdomens konsekvenser bör även uppmärksammas i sjuksköterskeutbildningen. / Endometriosis is a chronic disease affecting approximately 10 percent of all women in their reproductive years. Worldwide are 176 million women estimated to be affected by the disease. Endometriosis causes a tremendous suffering affecting the physical, mental, social and sexual wellbeing of women. Indepth knowledge about how women experience their condition and their bodies is required to provide high quality care and promote wellbeing. The purpose of this study was to describe women’s experiences of living with endometriosis. The research was conducted in a literature review consisting of 12 articles eight of which were qualitative and four quantitative. The scientific articles was completed in England (2), Norway, New Zealand, Denmark, Austria (3), Australia (3), Iran and USA between 2004-2014. The result showed that women experienced tremendous dissatisfaction as regards the care they received resulting in suffering. The disease affected aspects of life negatively which gave rise to life suffering and disease suffering. Although endometriosis is one of the most common diseases in the world, there is a detrimental lack of knowledge and incomprehension among health care professionals and the general public. There is thus a great need for improvements. Health care professionals must develop a better understand of how endometriosis affect women, avoiding a diminishing attitude to personal testimonies of grave suffering. More knowledge about endometriosis among health professionals and among the general public is necessary. There is a need for more education on the subject in the context of nursing studies.

Thesis (M. Med. Sc.)--University of Hong Kong, 2005.

p. 1-78 / Submitted by Antonio Geraldo Couto Barreto (ppgms@ufba.br) on 2013-10-02T18:05:28Z No. of bitstreams: 1 Hugo Maia.pdf: 4715178 bytes, checksum: 067aa12a42b4bcfc56dd4ac8e4173ab8 (MD5) / Approved for entry into archive by Rodrigo Meirelles(rodrigomei@ufba.br) on 2013-10-02T22:07:53Z (GMT) No. of bitstreams: 1 Hugo Maia.pdf: 4715178 bytes, checksum: 067aa12a42b4bcfc56dd4ac8e4173ab8 (MD5) / Made available in DSpace on 2013-10-02T22:07:54Z (GMT). No. of bitstreams: 1 Hugo Maia.pdf: 4715178 bytes, checksum: 067aa12a42b4bcfc56dd4ac8e4173ab8 (MD5) Previous issue date: 2013 / A expressão de aromatase no endométrio eutópico é desencadeada pela constante exposição a mediadores inflamatórios, que são produzidos durante o período menstrual e proliferativo do ciclo menstrual. A presença de aromatase nas células endometriais é um dos fatores desencadeantes de endometriose na cavidade peritonial, miomas submucosos e intra-murais, pólipos endometriais e adenomiose. Diante disso, esta tese tem como objetivo investigar os efeitos da expressão de aromatase no endométrio, compreendendo a ação desta e como se evitar o desenvolvimento das patologias endometriais. Para isso, foram analisados resultados de biopsias de pacientes submetidas à histerectomia e laparoscopia, no período de janeiro de 2007 a março de 2009 de dois centros de tratamento da cidade de Salvador- Bahia, as quais apresentavam algumas das patologias citadas, seguindo os critérios da American Sciety of Reproductive Medicine. Por fim concluiu-se que a diminuição da expressão de aromatase induzida por progestínicos foi acompanhada por uma redução na expressão de enzimas como ciclooxigenase-2 (Cox-2) ou de fatores angiogênicos como VEGF no endométrio. A inflamação no endométrio também foi reduzida pela progesterona ou por progestínicos e este mecanismo envolveu a inibição da ativação do NF-kappa B. Estes achados sustentam a hipótese do papel que teriam os progestínicos como agentes anti-aromatase e anti-inflamatórios no manejo atual da endometriose e de outras patologias ginecológicas. E que o uso contínuo de contraceptivos orais combinados contendo gestodeno ou o uso de sistemas intra-uterinos liberadores de levonorgetsrel são efetivos na prevenção tanto da recorrência de endometriose, quanto da menorragia associada a miomas. / Salvador