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For the millions of women living with endometriosis, significant disruption to normative life expectations and a considerable impact on everyday life are common. Whilst for many women concerns about and experiences of infertility may be a central feature of life with the condition, little work has considered the impact that chronic illness has on reproductive decision-making or on the ways in which a medical condition is managed in relation to plans for conception. This chapter considers how heterosexual women with endometriosis and their male partners experience the intersection of fertility desires with the use of reproductive technologies (contraceptive and conceptive) and how these experiences intersect with the medical and surgical management of endometriosis. Three themes drawn from interview data are presented: the first considers how the uncertain and indeterminate character of endometriosis shapes imaginaries about future fertility, conception and childbearing. The second focuses on how endometriosis mediates expectations about the success of fertility treatments and technologies; exploring in particular the manifestation of low expectations in relation to possible success. The third theme considers how endometriosis and fertility pathways intersect, creating specific disruptions whereby fertility treatment may be delayed by endometriosis care, and where endometriosis care may be interrupted or paused by fertility desires. Our data show how endometriosis shapes reproductive desires, decision-making and experiences and has important implications for understanding how for those living with a chronic illness, plans for having children are made within a context of biographical and biomedical contingency.

Additional file 1. Semi-structured Interview Guide.

The EDNA project was developed to consider the political, economic and moral configuration of egg donation for fertility treatment in the UK, Belgium and Spain. Europe was selected as the site for the study because of the relative lack of research relating to the organisation and practice of egg provision in this context and due to the unique constellation of regulatory oversight for member states who are subject to the requirements of the EU Tissue and Cells Directive. The study was based on a constructivist-interpretive epistemology and employed a sequential multiple-method design to explore processes and experiences of egg donation. Phase one involved mapping policy in the three countries and across Europe, stakeholder interviews and a literature review. Phase two involved analysis of clinic websites and specifically their online recruitment materials in the three countries. Phase three involved qualitative interviews with professionals and egg providers to understand perceptions, experiences and moral reasoning amongst those involved in the practice, and phase four involved stakeholder workshops and dissemination activities. Ethical approval for the study was granted by De Montfort University (ref 1989), Ghent University and CSIC.

Additional file 1. Quality checklist results for the assessment of risk of bias.

Additional file 1. COREQ Checklist. Consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist. (PDF 113 kb)

Additional file 2. Unit costs applied for valuation of resource use.

Additional file 5. Other reasons given for not wanting to attend SSME if invited.

Additional file 2. Interview Questions and Topic Guides. A document providing details of scripts and topic guides used in interviews and focus groups during the study. (DOCX 21 kb)

Additional file 7. Summary of the findings for each feasibility objective.

Additional file 1. Ethnographic interview topic guides.

Additional file 3. Sample matrix of performance objectives, determinants and change objectives. Sample matrix of performance objectives, determinants and change objectives. (PDF 138 kb)

Additional file 4. Other reasons given for not attending SSME.

Additional file 3. Summary of extracted continuous primary care data by practice.

Additional file 4. Timeline for Study - Gantt Chart. Gantt chart. (PDF 94 kb)

Additional file 6. Case examples demonstrating impact.

Endometriosis is a chronic gynaecological condition affecting women of reproductive age. Common symptoms include severe pain during menstruation, chronic pelvic pain, fatigue, heavy menstrual bleeding, and pain during sexual intercourse. It is also associated with 40% of attendances at infertility clinics. Endometriosis can significantly impact upon intimate relationships, however there has been little previous research into how couples experience and cope with endometriosis. The aim of the ESRC-funded UK-based Endopart study (grant ref ES/J003662/1) is to explore the impact of endometriosis on couples. This paper describes female and male participants’ accounts of coping with the condition. Qualitative, in-depth, face-to-face interviews with 22 heterosexual couples were conducted. Women and their male partners were interviewed separately (n=44). Inclusion criteria were a laparoscopic diagnosis of endometriosis and that couples were living together at time of interview. Principles of systematic sampling were employed to ensure diversity regarding age, ethnicity, illness trajectory, and recruitment route. Data are being analysed thematically, informed by an interpretivist approach. Initial analysis suggests that female participants used a coping strategy of “just getting on with it”, by limiting discussions about the impact of their condition with others (including their partner) and using techniques to distract themselves. Male participants talked of being optimistic about the condition, needing to negotiate their partner’s mood swings, and refraining from speaking to others about their partner’s endometriosis. Information on how women and their male partners report coping with endometriosis will aid the development of an evidence-based intervention to support couples living with this gendered condition.

Despite a growing literature on the value of couple data in studies of particular social phenomena, individuals still constitute the basic unit of analysis in most qualitative research. This paper explores the complexities of carrying out dyadic research with couples living with endometriosis. Endometriosis is a common enigmatic gynaecological condition. There is no known cause and the primary symptom (pain) does not correlate with the observable extent of disease. Endometriosis has a huge impact on the lives of women, but despite the chronic, potentially disabling and gendered nature of the condition there is little work on the psychosocial impact on couples. The ESRC-funded Endopart study was designed to explore the experience of heterosexual couples living with endometriosis and included detailed face-to-face interviews with 22 heterosexual couples. Men and women were interviewed separately, in most cases simultaneously by two different interviewers. Through a reflexive account of the research process, the paper explores the rationale for dyadic research and discusses the practical, ethical and methodological challenges of using a dyadic approach. In particular, it assesses the complexities of using solo rather than joint interviews identifying both advantages and difficulties at the level of data collection and in relation to dyadic data analysis. Despite ethical and interpretive complexities, it is argued that this approach allowed participants to articulate perceptions and experiences considered to be relationally or emotionally highly sensitive, permitted men’s accounts to be heard unmediated by women’s participation and has allowed a unique insight into how couples navigate this common chronic condition.

Endometriosis is a chronic condition affecting between 2-17% of women of reproductive age. Common symptoms are chronic pelvic pain, fatigue, severe pain during menstruation, heavy menstrual bleeding, and pain during sex. The ESRC-funded Endopart study (www.endopart.co.uk) aimed to explore the impact of endometriosis on women and their male partners. This paper reports findings relating to the biographical disruption which couples experience when living with endometriosis. In-depth, face-to-face interviews with 22 heterosexual couples were conducted. Women and their partners were interviewed separately (n=44). Interviews were fully transcribed and entered into NVivo for analysis. Data were analysed using a systematic, thematic method, informed by an interpretivist relational approach. Biographical disruptions (Bury, 1982) are not only experienced by chronically ill individuals but also by those around them. Findings suggest that endometriosis creates disruptions, appraisals and revisions across several life domains, including sexual relations, planning for and having children, working lives and social lives outside the home, both for women and for male partners. Using Williams’ (2000) qualification of the concept of biographical disruption, the paper discusses how timings and context mediate the impact of endometriosis on biographical disruption. Drawing on the idea that the fashioning of selves and of relationships is reflexive and contingent, it discusses how biographical appraisals in light of endometriosis are recurrent and have to be continually negotiated between partners. Finally it explores how couples strategically mobilise resources to maximise favourable outcomes and maintain a sense of hope.

Problem statement While there is evidence of a negative socio-psychological impact on women, little is known about how couples experience living with the common, chronic condition endometriosis. In particular there is a dearth of evidence on the experience of male partners of women with this debilitating condition. The aims of the UK based Endopart study, funded by the UK Economic and Social Research Council, are to explore the impact of endometriosis on heterosexual couples and to provide an evidence base for improving couple support (www.endopart.co.uk). Methods Qualitative, in-depth, face-to-face interviews with 22 heterosexual couples were conducted. Women and their male partners were interviewed separately (n=44). Inclusion criteria were a laparoscopic diagnosis of endometriosis and that couples were living together at the time of interview. Principles of systematic sampling were employed to ensure diversity amongst participants regarding age, ethnicity, illness trajectory, and recruitment route. Interviews were transcribed verbatim and data were analysed thematically, using NVivo (qualitative data software) and informed by an interpretivist and gender-relational approach. Results Men’s reports suggested that many took a stoical approach to endometriosis, and were reluctant to acknowledge or discuss any emotional impact of the disease with their partner. However, during the interviews men did describe feelings of worry, and of helplessness at not being able to alleviate symptoms. Some men also reported anger and frustration at the healthcare system and the absence of a ‘cure’ for the pain and suffering of partners. Many saw it as their role to act as advocate for their partner, often taking an assertive stance in consultations. Men also perceived their role as protector, but reported sometimes feeling helpless in carrying this out. Findings from women’s interviews reinforce previous research on their experience. Women described how living with endometriosis and treatment side effects impact on their mood resulting in feelings of depression, tearfulness and/or irritability. They were more open about emotions and reported feelings of guilt and loss relating to their perceived gender roles, such as diminished sexual relationships. A few spoke of not feeling feminine or an adequate wife and several had suggested that their partners should leave them in case they could not have children. They described their partner as ‘good’ when they ‘helped out’ or took over household tasks, as these were seen by both men and women as being predominantly female responsibilities. Conclusion Gender roles appear to shape the way in which women with endometriosis and their partners react to living with endometriosis. In line with dominant masculine norms, men tend to take a more controlling and assertive role than women, viewing endometriosis as a problem to be sorted, feeling helpless when they cannot find a solution. Drawing on dominant feminine norms, many women report feeling guilty at their perceived inadequacies, for example avoiding sexual intimacy or an inability to undertake routine household tasks. At present discussions of management are focused on the woman, largely ignoring the impact on male partners and on couples. The findings here suggest responses to living with endometriosis are different for women and men and this knowledge can inform the provision of more couple centred services.

Study question How do heterosexual couples experience living with endometriosis? Summary answer Our data demonstrate that endometriosis and its management significantly disrupts the lives of both women and men in many domains and that healthcare providers and support groups need to give further attention to the specific needs of men and of couples in the management of this common, chronic condition. What is known already Endometriosis is a chronic gynaecological condition affecting women of reproductive age with an estimated incidence of 5-15%. Symptoms include severe dysmenorrhoea, chronic pelvic pain, fatigue, heavy menstrual bleeding and dyspareunia. It is associated with 40% of attendances at infertility clinics. Studies report strain on social and marital relationships, as well as identifying partners as an important source of support. Such studies only capture women’s experiences, however, and male partners remain largely absent from the literature. Study design, size, duration The UK-based ‘Endopart’ study is a qualitative, cross-sectional interview study. Inclusion criteria for couples were a laparoscopic diagnosis of endometriosis and that couples were living together at the time of interview. Interview data were collected between April 2012 and December 2012. Participants/materials, setting, methods In-depth, face-to-face interviews with 22 heterosexual UK couples were conducted. Women and their partners were interviewed separately (n=44). Interviews were fully transcribed and entered into NVivo for analysis. Data were analysed using a systematic, thematic method, informed by an interpretivist relational approach. Findings were discussed with clinicians and recommendations produced. Main results and the role of chance In heterosexual couples, the impact of endometriosis is not confined to women, but has significant implications for the male partner and for the couple’s relationship. The practical and emotional impact on men was found to be substantial. Couples experienced considerable disruption, loss and anxiety in the following seven domains: managing daily life; sex and intimacy; planning for and having children; mood and tensions; communicating and supporting each other; accessing and negotiating health care; and utilising information and external support. Principles of systematic sampling were employed to ensure sample diversity regarding age, ethnicity, illness trajectory, and recruitment route. Interim outcomes from the study were discussed at an expert stakeholder workshop in order to enhance interpretive validity. Limitations, reason for caution The cross sectional design makes it difficult to capture the dynamic nature of the impact of endometriosis across the life course. The sample contained a significant proportion of well educated individuals. It would be helpful to confirm findings from the rich and detailed interview data with a larger quantitative study. Wider implications of the findings An estimated 176 million women are affected by endometriosis worldwide. There is no known cure, and treatment has variable impact on symptoms. Finding effective ways to manage the condition is crucial. Discussions of management are focused on the woman, largely ignoring the impact on couples. These findings have implications for the development of couple-centred management and counselling, adding unique data to the knowledge base of clinicians and others providing support to people living with endometriosis.

Infertility is a common medical condition. An estimated 9% of women between the ages of 20 and 44 experience infertility, which equates to over 70 million women worldwide. However, infertility is more than a medical condition. For many people, especially in strongly pro-natalist cultures, involuntary childlessness is a highly stigmatised social status, with significant effects on the lives of women and men. The inability to conceive has been documented in an extensive collection of studies as an experience that has a profound influence on well-being. Guilt, helplessness, depression and marital stress are commonly reported, particularly for women. In many cultures, parenthood (and especially motherhood) is highly desired and is seen as a natural consequence of marriage. Voluntary childlessness is virtually unknown. Thus the desire for children is confirmed as a social expectation and a deeply held personal need. Failure to conceive (and in some cases, failure to give birth to a male child) may have significant consequences for women in particular, though men too do not entirely escape the stigma of infertility and recent work also highlights the negative impact of infertility on men’s social and psychological functioning. While there are many commentaries which discuss the issue of infertility within specific religious ideologies, such as Islam, Judaism or some forms of Christianity, there are fewer empirical studies which explore people’s perceptions of infertility and assisted conception technologies or the lived experience of infertility among faith groups, especially in the context of high resource countries in the West. This paper draws on two related research projects which explore cultural and religious aspects of infertility and assisted conception in British South Asian communities. It discusses how Islam in particular impacts on community understandings of fertility and childlessness and considers how Muslim communities in the UK perceive assisted reproductive technologies. In particular, the issue of third party assisted conception is one which has raised particular concerns for Muslims in the UK and worldwide, with a variety of extant interpretations regarding the religious acceptability of egg and sperm donation. The paper discusses data from focus groups and face to face interviews with British Muslims of Bangladeshi and Pakistani ethnic origin. This qualitative research explores the public perceptions of childlessness, fertility treatment and gamete donation. The paper discusses how religion impacts on the ways in which people make sense of infertility, attitudes to childless couples and views of infertility treatment options. Religion is seen to play a role in the desire for children, in the aetiology of infertility, in negotiating infertility and in attitudes to assisted conception technologies. The paper also outlines how religion can influence the seeking of alternatives to bio-medical ‘solutions’ to involuntary childlessness. Healthcare professionals are not always sensitive to the issues which arise for Muslim patients in negotiating infertility and accessing treatment and the paper calls for an approach to care which recognises and respects cultural and religious diversity.

Introduction Endometriosis is a common, chronic, disabling condition of unknown aetiology which affects an estimated 5-15% of women worldwide. Common symptoms include dysmenorrhoea, heavy menstrual bleeding, pelvic pain, fatigue and dyspareunia and it is associated with infertility. While there is evidence of a negative socio-psychological impact on women, there is little research internationally which explores the experience of male partners or the impact on couples. The aims of the UK based Endopart study* (funded by the UK Economic and Social Research Council) are to explore the impact of endometriosis on couples and to provide an evidence base for improving couple support. Material & methods Qualitative in-depth interviews with 22 heterosexual couples were carried out, with men and women interviewed separately (n=44 interviews). Data were analysed thematically and dyadically, informed by an interpretivist and gender relational approach. A participatory stakeholder workshop with couples, healthcare providers and support groups enabled a critical dialogue on emergent findings and development of recommendations. Results Endometriosis can have a major and often devastating impact on all aspects of life for both women and their male partners. Involvement in treatment-seeking and associated decision-making was one way in which men provided support to their female partners. In this paper we explore the role that male partners took in: interactions with healthcare providers; decisions about treatment; and supporting their partners through treatment regimes. Conclusions This study uniquely advances knowledge of the couple experience of living with endometriosis and argues for health care professionals to consider the implications of this enigmatic condition for the support they provide to women and their male partners. It highlights the central role of male partners in women’s decision-making and subsequent management of endometriosis. * see www.endopart.co.uk

Background: Endometriosis is an enigmatic, chronic gynaecological condition of unknown aetiology affecting women of reproductive age. Incidence is difficult to assess but has been estimated at between 5 and 15% of the female population. Common symptoms are severe dysmenorrhoea, chronic pelvic pain, fatigue, menorrhagia, and dyspareunia. It is also associated with 40% of attendances at infertility clinics. As there is no cure for endometriosis the management focuses on removal of ectopic endometrial tissue and symptom relief which can involve a range of interventions including analgesics, hormonal therapy and surgical interventions, with varying and unpredictable rates of success. The aims of the UK-based Endopart study (funded by the UK Economic and Social Research Council: ES/J003662/1) are to explore the impact of endometriosis on heterosexual couples and to contribute to enhancing the well-being of people living with endometriosis by providing an evidence base for improving couple support. Methods: Contextual interviews with key informants (n=11) were followed by qualitative interviews with 22 heterosexual couples which were analysed within a critical realist framework. Separate, in-depth, face-to-face interviews (n=44) were conducted with women and men. Inclusion criteria were a laparoscopic diagnosis of endometriosis and that couples had been living together for at least one year. Principles of systematic sampling were employed to ensure diversity amongst participants regarding age, ethnicity, illness trajectory, and recruitment route. Data were analysed thematically, informed by an interpretivist and gender relational approach. A participatory stakeholder workshop with couples, healthcare providers and support group representatives enabled a critical dialogue on emergent findings and the development of recommendations for couple support in endometriosis. Results: Endometriosis pain can have a major and devastating impact on all aspects of women’s lives and those of their partners. Two key dilemmas relating to pain management are discussed. First, dyspareunia requires women to make a difficult choice between abstaining from sex, with resultant feelings of guilt and concerns about risks to relationships, and enduring painful sex to experience desired intimacy and closeness. When male partners are aware of dyspareunia, they become reluctant to instigate sex and experience associated feelings of guilt. Second, treatments that alleviate pain often prohibit conception and findings demonstrate the difficult choice couples have to make between pain reduction and achieving parenthood, while simultaneously assessing risks that their treatment may be ineffective or that conception may not occur. The decision making process is further complicated when partners have differing priorities. Conclusion: Desires for motherhood and intimacy shape women’s choices concerning endometriosis pain management, and are, for some, prioritised over pain reduction. This study also uniquely illuminates that men also have to consider their own desires for fatherhood or intimacy in the context of their partner’s endometriosis. Healthcare providers need to understand the impact of endometriosis pain on couples and the complex factors that influence attitudes and actions concerning endometriosis pain management.

Background Endometriosis is a common, chronic, disabling condition of unknown aetiology which affects an estimated 5-15% of women worldwide. Common symptoms include dysmenorrhoea, heavy menstrual bleeding, pelvic pain, fatigue and dyspareunia and it is associated with infertility. While there is evidence of a negative socio-psychological impact on women, there is little research internationally which explores the experience of male partners or the impact on couples. Aims The aims of the UK based Endopart study* (funded by the UK Economic and Social Research Council) are to explore the impact of endometriosis on couples and to provide an evidence base for improving couple support. Method Contextual interviews with key informants (n=11) were followed by a qualitative interview study of 20 heterosexual couples within a critical realist framework. Separate, in-depth, face to face interviews (n=40) were carried with men and women [March to November 2012]. Data were analysed thematically and dyadically, informed by an interpretivist and gender relational approach. A participatory stakeholder workshop with couples, healthcare providers and support groups enabled a critical dialogue on emergent findings and development of recommendations. Results Endometriosis can have a major and often devastating impact on all aspects of life for both women and their male partners. In this paper we highlight the impact of endometriosis on the sexual relations of couples and the difficulties some couples experience communicating with each other and with healthcare providers in this highly sensitive area. Discussion and conclusion Hegemonic ideas of femininity, masculinity and gender relationships shape couples’ experience of endometriosis. Healthcare providers need to understand the impact of endometriosis and its treatment on quality of life, especially on sexual relationships. The paper uniquely advances knowledge of couples’ experiences of living with endometriosis and argues for nurses to consider the implications of this enigmatic condition for nursing practice. * see www.endopart.co.uk

Endometriosis is a relatively common gynaecological condition affecting up to 2 million women in the UK alone. Common symptoms are chronic pelvic pain, fatigue, heavy painful periods, and a deep pain experienced during sexual intercourse. It is also associated with 40% of attendances at infertility clinics and a poorer outcome in women undergoing IVF. There is no consensus on what causes endometriosis or the most appropriate medical treatment and there is no definitive cure. Research with women living with endometriosis has highlighted the chronic and disabling nature of the condition and its impact across a wide range of life domains. However, very little is known about how male partners of women living with endometriosis experience this condition or about the dyadic components of gendered chronic illnesses more generally. Whilst all chronic conditions will affect the "well" partner to some extent, endometriosis can be particularly problematic for couples because of its potential impact on fertility and sexual relationships and because of its enigmatic nature. This paper is based on an ESRC funded dyadic study of heterosexual couples living with endometriosis (www.endopart.co.uk). From an analysis of interviews with male partners of women diagnosed with endometriosis, it explores how men make sense of a gendered chronic condition, the impact on men’s lives and the kinds of health work that men enact in daily living with a partner with endometriosis.