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An Integrative Literature Review On The Experiences Of Women Living With Endometriosis

Introduction

Endometriosis is referred to a painful disorder in which the similar tissues that line the inner lining of the uterus grows outside the uterus. In this condition, the most commonly involved organs are fallopian tubes, ovaries and tissues which are lining the pelvis. The endometrial-like tissues growing outside the uterus initiates to act as endometrial tissues and it thickens, breaks down and bleeds every month with each menstrual cycle (Zullo et al., 2017). In this study, the experiences of women living with endometriosis are to be discussed to understand the level of pain they face, and the additional hindrances they undergo due to the presence of the condition. For this purpose, the integrative literature review is to be performed by using 8 qualitative articles related to the topic. Thereafter, implementation of the findings in the nursing and medical field in respect to patients is to be explained.

Rationale

Endometriosis is one of the common gynecological problem affecting women during their childbearing years. In the global context, endometriosis affects nearly 10% of the women and girls of reproductive age that is equal to 190 million women and girls over the world (WHO, 2021). In the UK, 1 in 10 women in their reproductive year experience endometriosis (endometriosis-uk.org, 2018). This indicates that prevalence of endometriosis is high in the UK as well as in global conditions. It is mentioned that presence of endometriosis in women results in 30-50% infertility in them (Maddern et al., 2020). This informs that endometriosis leads women fail to conceive and become mothers. Moreover, it is informed by RCOG (2017) that nearly 60% of women diagnosed with endometriosis experience chronic pelvic pain and women with endometriosis are 13 times more likely to experience abdominal pain compared to normal individuals. Thus, it is seen that endometriosis acts as a deliberating and chronic condition in women making it one of the key health problems to be discussed.

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The experiences regarding endometriosis in women are to be explored because it is a long-term condition that negatively affects the emotional, physical and well-being of the women in turn hindering their ability to effectively maintain daily routine and good health (WHO, 2021). The diagnosis of endometriosis is mentioned to be difficult to diagnose as different women experiencing the condition expresses different symptoms that are similar to pelvic or inflammatory bowel syndrome (Karapolat and Kucuk, 2019). Thus, understanding the different experiences regarding endometriosis in women is important to develop insight regarding the way to recognise the symptoms regarding the disease in an appropriate way and to encourage women to voice their concerns regarding the health issue.

The understanding of experiences regarding endometriosis has current been important because it is showing increased rise in women in their 30s and 40s (Maddern et al., 2020). Moreover, there is no specific cure present for the condition, but early diagnosis is important as it helps to limit the pain and progression of the disease. Therefore, experiences regarding endometriosis are to be determined to develop knowledge regarding the way an early diagnosis of the disease can be reached. Thus, the current study is developed to gather the holistic experience of women regarding endometriosis who are living with the condition.

Reason for Integrative Literature Review

The integrative literature review is important to be performed in relation to the topic because it would allow creating distinctive research for generating advanced knowledge regarding the experience of endometriosis in women. This would help in creating new perspectives and framework regarding endometriosis development and management that could be used in better control of the condition in women (Brilhante et al., 2017).

Literature Review Method

The presence of a focussed research question is important because it sets the plan for the study that is to be followed in gathering concept and information to execute the study (Ludlow and Green, 2020). In this research, the PEO framework is to be followed in developing the research question. This is because PEO framework helps to process the key variables in the study that are to be considered in framing potential research questions (Oldfield et al., 2021). The PEO framework stands for population, exposure and outcome in the study. The population considered for the research are women suffering from endometriosis, exposure is understanding their experiences regarding endometriosis and outcome is effective knowledge regarding endometriosis and its management experience in women suffering from the disease. Thus, the research question is: “What are the experiences of endometriosis in women who are suffering and living from the disease?”

The electronic search strategy is to be implemented in framing the study because it is cost-effective, less time consuming and ensure limited barrier to be faced allowing enhanced and critical information to be gathered in less time from all over the world regarding any topic for its enhanced presentation (Leonardi et al., 2020). The platforms to be used in executing the electronic search are CINHA, Medline and PubMed. This is because the following platform contains wide number of journals and articles regarding medical and clinical topic that are presented scientifically with updated and proved evidence to gather clarified information for critical presentation of any topic (Zullo et al., 2017). The keywords to be used are “endometriosis”, “women”, “endometrial tissues”, “women with endometriosis”, “infertility due to endometriosis” and others.

The inclusion and exclusion criteria are to be considered to determine which characteristics are to be present in the study and which are to be avoided for developing an enhanced study (Nirgianakis et al., 2018). The inclusion criteria for the study are articles published on and after 2014, written in English, contains information about the experiences of endometriosis in women, academic, contains qualitative information and fully accessible. The exclusion criteria for the study are articles not written in English, published before 2014, non-academic, contains quantitative information and not fully accessible. The articles written in English are to be included as the information in them can be understood and explored by the researchers who have knolwdege regarding English only as they belong from the UK. The articles with qualitative information are to be included as the current topic is understanding experiences regarding endometriosis. Thus, analysis of qualitative information would help in including insight regarding attitudes and feeling of women while living with endometriosis that is the key concern in the study.

Inclusion and exclusion Criteria

The CASP tool is to be used in critically analysing the selected articles so that the strength and validity of the studies to be included in the current research can be determined (CASP, 2018).

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The thematic analysis process is to be implemented for data analysis because it provides flexibility to the researchers regarding the way data from the studies are to be gathered to systematically present them under themes to allow effective execution of the study (Grogan et al., 2018).

Results

Theme 1: Women’s Experiences of Living with endometriosis

The presence of endometriosis has become increasingly common in women and they face varied experience while suffering from the disease regarding which the information is to be discussed in the theme. For this purpose, the study by Moradi et al. (2014) is been explored which aims to mention the experiences of women regarding endometriosis. A total of 35 women of 17-53 years of age are included in the study. The small sample size hindered to reach data saturation in the study (Roman et al., 2018). The study used qualitative descriptive design and implemented semi-structured interview group discussion to gather information. The research design used in valid because it helped gathering information about the attitude, feelings and views of the women suffering from endometriosis which is key data to be collected and explored in the topic. The use of semi-structured group interviews is credible for the current research because it helped to collected open-ended along with close-ended data regarding the topic as well as assisted in delving deep into the personal and sensitive experiences of the women without making them feel uncomfortable (Simonsen et al., 2020).

The results reveal that women with endometriosis initially experienced irregular/ heavy bleeding, pain and dyspareunia (persistent or recurrent genetical pain after intercourse) as the key issues. Few of the women described the pain was horrendous or stabbing or breath-catching nature and older women mentioned to experience infertility as a result of endometriosis. The other experience regarding endometriosis was delayed diagnosis with average of 4.9 years (16-24 years aged women), 8.2 years (25-35 years aged women) and 1.9 years (35 and above years aged women). The women with endometriosis experienced recurrence of symptoms even after surgical procedure of treatment and mentioned diet, effective exercise and good sleep were lifestyle changes they experienced to support them in coping with the disease. The lack of awareness and information regarding endometriosis in women made them experience hindered and late diagnosis of the disease (Mohamed and Hassan, 2020).

In similar, the study by Rea et al. (2020) aimed to explore and understand the lived experiences of endometriosis in women. In contrast to the previous study Moradi et al. (2014), this study chooses qualitative study to be performed by using Cohen phenomenology. The use of the research method is valid for the study and gathering potential information for the topic because it helps in understanding and describing specific phenomenon (endometriosis) in-depth and determine the essence of lived experience of the participants (women with endometriosis). In the study, 25 women with average 27 years of age are included. The small sample size and monocentricity of sample selection leads the sample size to be less credible for the study because it failed to support generalisation of the results (Liu et al., 2019). The result revealed that one of the common experiences with endometriosis in women is delayed diagnosis out of lack of presence of specific diagnostic methods for the disease. The constant pain leads the women with endometriosis experience painful lives and hindered relationship with their partners. This is because endometriosis creates issues of infertility in women and hindered sexual intercourse.

Theme 2: Treatment and Diagnosis experiences of women who are living with endometriosis

The understanding of the treatment and diagnosis is experienced regarding endometriosis is important for women who are living with the condition. This is because it would help to determine the change in the aspect of healthcare for endometriosis is required for women to improve their well-being and support good health while dealing with endometriosis (Hållstam et al., 2018). In context, the study by Berterö and Grundström (2017) aimed to determine the experience of women with endometriosis regarding healthcare encounters. For this purpose, the study used qualitative, interpretive and phenomenological approach. The use of the design is credible for the current study as it helps in exploring and understanding the key meaning of the lived experiences of the people regarding any issue (Meral, 2019). Since the key aim in the study is to be identify the experiences of women regarding endometriosis in their lives, thus the use of design is effective to present valuable information to critically complete the research. In the study, 9 women who are 25-55 years of age are included. The small sample size creates hindrance in generalisation and transferability of the data for evidence-based practise (Da Broi et al., 2017). Thus, the sample selected did not assure the usage of the evidence in effective manner in similar context.

The results revealed that women with endometriosis experience regarding healthcare is facing treatment with ignorance regarding the vital condition of the disease and the need to have early treatment. Most of the women mentioned experience of struggle to open an expose their private parts for diagnosis of endometriosis, feeling of frustration from pain and bleeding and lack of effective as well as timely detection of endometriosis by healthcare professionals. The women with endometriosis experienced both destructive and constructive encounters while receiving treatment. They expressed the destructive encounters in healthcare mainly included disbelief, invisibility feeling, risk of physical and mental exposure. The constructive encounters in healthcare regarding endometriosis in women included grow of self-esteem out of acknowledgement and visibility along with care and support by healthcare professionals.

In comparison, the study by Silva et al., (2021) aimed to determine the experiences of women regarding diagnosis of endometriosis. For this purpose, a qualitative descriptive research design is used and semi-structured interview with audio recording of the verbatims of participants are gathered in exploring the data for executing the study. The study design is credible for the research because it helps in gathering direct experiences of women in detail regarding their complications and others faced for diagnosis regarding endometriosis. However, the low number of women with different social and economic profilers in the study created difficulty in assuring the reality of the universal access of the information gathered.

The results revealed that women with endometriosis mostly experience pain from the initial days of their mensural cycle along with pelvic pain, infertility, dysmenorrhea and dyspareunia being common symptoms regarding their condition. The women with endometriosis experienced judgement in such as expression of their symptoms to be nonsense and womanly thing. The women with endometriosis mentioned one of the key diagnosis for the condition is continuous pain irrespective of the number of painkillers taken by them. There was always uncertainty for the diagnosis of endometriosis in women even when done by experienced health professionals which delayed their care.

Theme 3: Impact of Endometriosis on lives of women

The presence of endometriosis in women creates varied impact on their physical, mental and social life. Thus, the current study by Young et al. (2015) is to be explored as it aimed to understand the varied effect of endometriosis in women who are living with the condition. The study used systematic review design in gathering information. The benefit with the use of systematic review is that qualitative data regarding any topic can be explored through analysis of various potential research papers. It also allows gathering critical information regarding any topic (Scutiero et al., 2017). However, the limitation faced with the use of systematic review is that data are mentioned in the study through influence of attitude and views of the researchers that at times may create biased data collection in the study (Mira et al., 2018). The studies gathered for review were all from high-income countries due to which it limited to understand the way endometriosis in women who are living in poor or low-income countries effect their lives.

The results revealed that effect of endometriosis in women adversely affected their sex life due to uncomfortable sexual intercourse in presence of the disease. The social and work-life of the women were also compromised as due to extreme pain they have to avoid social gathering at times and fail to perform effectively at work or work in to get promotion with higher responsibilities. The delay in diagnosis of endometriosis in women is the key effect in their life as it leads to face increased suffering while being unable to cope pain. The results further revealed that advanced knowledge gain and seeking of information regarding endometriosis affect the women suffering from the condition to develop power and control over themselves as well as health professionals in managing the condition. This is because their doubts regarding the health issue was resolved and they developed clear view about the actions to be performed to remain healthy while copping with endometriosis (Fairbanks et al., 2017). The lack of knowledge among doctors and insensitive comments from them regarding endometriosis leads women suffering from the condition to experience avoidance of consultation regarding the disease.

The study by Missmer et al. (2021) which is a narrative literature review explained in detail the impact of endometriosis on the life course of women living with the condition. The narrative review acts as critical, comprehensive and objective examination of the knowledge regarding any topic (Murji et al., 2020). Thus, its use of credible in framing the current study because it helped in gathering theoretical information about the effect of endometriosis in women in their life course. The narrative review mention chronic pain in pelvis is one of the key effects faced by 1/3rd women while suffering from endometriosis and it last for more than six months. The presence of dysmenorrhea as a result of endometriosis in women causes effect on their health to face deliberating pain, nausea, fatigue, irritable bowel syndrome and others. The presence of endometriosis in women effect their sexual life to be hindered out of creation of sexual dissatisfaction. They also face hindered employment and progress in career, difficulty in motherhood and others. It also creates hindered effect on their marital life as women with endometriosis due to the symptoms fail to sexually satisfy their partners out of pain during sexual intercourse leading them to divorce the women (La Rosa et al., 2020).

The study by Rea et al. (2020) mentioned lower performance at work, hindered formation of social relationship and ineffective management of free time is experienced by women as an impact of endometriosis on their physical health. The presence of endometriosis also impacted the women to face hindrance in being pregnant and difficulty to achieve motherhood. In comparison to the other studies, the study by Cole et al. (2021) focussed to determine the psychological impact of endometriosis on the life course of the women. For this purpose, qualitative descriptive design is used and replies from 34 women are gathered in the study through online interview session. The use of the method is reliable for the study topic as it helped in gaining in-depth data of the day-to-day impact caused by endometriosis on the mental health of the women who are suffering from the condition. The results revealed that presence of endometriosis in women often impact them to feel mad out of the extreme pain in the pelvis. They also expressed to feel being burden of care on their loved ones and endometriosis makes the women suffering from the condition develop hindered social relationship.

The facts are evident as the study by Moradi et al. (2014) also mentioned that impact of the experience of endometriosis on women makes them psychological disturbed and face hopelessness, depression, frustration and others regarding their disease and themselves. It also negatively impacted their sexual and marital relationship with the partners because of bleeding during or after sexual intercourse. The social life of the women who experienced endometriosis was also negatively impacted by making them miss parties, travelling and others due to sudden extreme pain and bleeding from the condition. The endometriosis presence in women also impacted them financially as increased cost of treatment regarding the health issue made them always require enough finances.

Implementation of Finding

The discussion of the results from the study informs that one of key experience among women living with endometriosis is late diagnosis of the condition. The late diagnosis mostly led the women with endometriosis to suffer more and face adverse life events that compromised their well-being (Li et al., 2018). One of the key recommendations in this aspect is supporting early diagnosis of endometriosis in women suffering from the condition. This is because early diagnosis would help the women with endometriosis be treated time to avoid pain and suffering from the disease as well as experience less negative impact on the different aspects of their life (Liu et al., 2020). The early diagnosis of endometriosis is also important for the women with the disease so that they can be able to plan ahead regarding the decisions they require to make and financial matters to be managed to ensure enhanced living with the condition (Khumora, 2021). The study by Martire et al. (2020) mentioned that early diagnosis of endometriosis in women would led them to take precautionary measures to avoid infertility and plan ahead their motherhood to be early to have children.

In order to analyse the steps to be followed to implement the recommendation and successfully achieve mentioned change, the Lewin’s Change Model is to be used. This is because Lewin’s change model is easier to be implemented to form long lasting change (Burnes, 2020). Moreover, it supports gradual approach to be implemented in making the change due to which enhanced momentum is created with time to execute the change. It also encourages everlasting alteration focussed to be implemented (Galli, 2018). However, the Kotter’s change management model is not to be used because it includes various steps and requires increased amount of time to be implemented. Moreover, missing of any of the steps in Kotter’s model leads to hindered achievement of the alteration and may create resistance in reaching the change (Harrison et al., 2021). The Lewin’s Change Model include three steps that are unfreezing, change and refreezing stage (Burnes, 2020). In the unfreezing stage, the individuals involve in making the change are to be influenced to understand the need of the change. This is to be achieved by making individuals to make the change understand its importance of the change and the potential threats and repercussions to be experienced by not making the change (Carman et al., 2019). Thus, the initial steps of implementing early diagnosis of endometriosis for women is creating sense among healthcare professionals and nurses to be involved in making the change it importance and adversities on making the change for endometriosis management in women in long-term.

In the change stage, the collaboration between individuals in making the change is to be developed. This is because effective collaboration between different professionals leads to create an efficient team to work together in achieving the change (Mohiuddin and Mohteshamuddin, 2020). Thus, a powerful collaboration between medical researchers and health professionals are to be developed so that they can determine the specific context to the improved for early detection of endometriosis in women to ensure their better health. In making the change, the presence of vision and strategy for the change is essential. This is because they help the stakeholders involved in change determine the way change is to be achieved (Galli, 2018). As argued by Teixeira et al. (2017), lack of vision and strategy for change hinders effective alteration and resolving of the problem. This is because without vision the stakeholders involved in the change remain confused and misdirected about the change to be achieved. Moreover, lack of strategy makes the stakeholders involved in the change remain unaware of the way to achieve the change. Thus, creation of appropriate strategy and vision is important to achieve the recommendation made for supporting women with endometriosis.

The vision developed for making the change is achieving early diagnosis of endometriosis in women to limit their suffering from the disease. The strategy to be implemented in achieving the change is educating health professionals regarding the way to use bimanual and speculum examination, abdominal palpitation, ultrasound and laparoscopy apart from normal examination of pelvis region for early diagnose of endometriosis in women while excluding alternative diagnosis. In the change process, communication of the vision and strategies and effectiuve interaction of role and responsibilities of the individuals involved in making any change is important. This is because enhanced communication of the vision makes the stakeholders determine specific roles to be played by them as per their expertise to achieve the vision (Teixeira et al., 2017). Moreover, the vision and strategy act as direction for the stakeholders to make the change regarding the way they are to make decisions. In order to make effective communication with the stakeholders making the change of early diagnosis for women with endometriosis, information and communication technology is to be used.

In making change, removal of barrier to change is essential to be done in the change stage as mentioned in Lewin’s model of change. This is because the obstacles act to limit the progression of change by restricting the working ability and decision making of the stakeholders making the change (Kuo and Chen, 2019). Thus, in making the change of early diagnosis of endometriosis in women, the obstacle which is lack of advanced knowledge and awareness of the strategic use of equipment and examination for endometriosis among the physicians and nurses is to be resolved. This is to be achieved by providing training of effective use of medical equipment for early diagnosis of endometriosis. In the refreeze stage, effective actions are to be taken so that the established change implemented in the organisation or working process is followed for long-term. In this context, discussion of success stories and the benefit of the change are to be informed in the medical culture regarding early detection of endometriosis in women, to make the change anchored in the field to be followed by all.

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Conclusion

The above discussion informs that endometriosis is a chronic condition in women which makes them suffer hindered health consensus and negative effect on their life. In the UK as well as globally, endometriosis in women has currently become a key gynaecological problem. Thus, detailed experiences of women suffering from endometriosis is to be understood to determine the way the problem has become vast and is a key health issue to be immediately managed. For this purpose, review of 7 key qualitative articles are done out of which two articles are secondary articles. The results revealed that endometriosis in women makes them experience psychological problem such as stress, frustration and others. It also makes them experience intense pelvic pain, bleeding during sexual intercourse, infertility and others. In treatment, the women with endometriosis experience delayed diagnosis and lack of effective care support as issues for further suffering from the condition. The social and work-life of the women with endometriosis are compromised. One of the key recommendations developed from the results in that promotion of early diagnosis of endometriosis is important in women to make avoid hindered well-being. In order to implement the recommendation, Lewin’s Change model is to be followed.

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Zullo, F., Spagnolo, E., Saccone, G., Acunzo, M., Xodo, S., Ceccaroni, M. and Berghella, V., 2017. Endometriosis and obstetrics complications: a systematic review and meta-analysis. Fertility and sterility, 108(4), pp.667-672.

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Theming Table

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