Introduction

Endometriosis is a chronic gynaecological condition which can have a considerable impact on quality of life (QOL) for women (Culley et al., 2013; De Graaff et al., 2013; Della Corte et al., 2020; Gao et al., 2006; Jia et al., 2012; Marinho et al., 2018; Rossi et al., 2021). In particular dyspareunia (pain during or after sex) is a common symptom, and is associated with reduced sexual activity, reduced sexual QOL, sexual dysfunction and impaired sexual functioning amongst women (Bernays et al., 2020; De Graaff et al., 2016; Fritzer et al., 2013; van Poll et al., 2020). However, previous investigations of the impact of endometriosis on sex have focused predominantly on dyspareunia, have overlooked the impact on intimacy, closeness and the couple relationship, and have paid scant attention to partners. This paper reports detailed, qualitative data on the complex and nuanced ways in which endometriosis can impact upon sex and intimacy for heterosexual women¹, their male partners and the heterosexual couple unit². In doing so it demonstrates the importance of taking a couple-focused, relational and gendered approach to enhance understanding of the range of ways in which endometriosis can affect sex and intimacy and therefore the couple relationship. It illustrates the specific and gendered ways in which heterosexual women and couples experience, navigate and manage these impacts, and discusses how this management is shaped by conventions of menstrual etiquette (Laws, 1990), discourses of male sex drive (Ayling & Ussher, 2008) and practices of emotion work (Fahs & Swank, 2016).

Background

Endometriosis is a chronic gynaecological condition in which endometrial-like tissue is found outside the uterus, producing a chronic, inflammatory reaction (European Society of Human Reproduction and Embryology (ESHRE), 2013; Kennedy et al., 2005; National Institute for Health and Care Excellence (NICE), 2017). Prevalence is difficult to estimate but it is thought to affect between 2 and 10% of women of reproductive age (Eskenazi & Warner, 1997). Common symptoms include chronic pelvic pain, dysmenorrhoea, fatigue, period-related or cyclical gastrointestinal or urinary symptoms, infertility and dyspareunia (pain during or after sexual intercourse) (European Society of Human Reproduction and Embryology (ESHRE), 2013; National Institute for Health and Care Excellence (NICE), 2017). While not all women with endometriosis experience dyspareunia, it is recognised to be a physically and psychologically distressing symptom requiring multidisciplinary treatment and support (Vercellini et al., 2011).

Numerous reviews (Culley et al., 2013; Della Corte et al., 2020; Gao et al., 2006; Jia et al., 2012; Marinho et al., 2018; Rossi et al., 2021) and largescale international multicentre research projects (De Graaff et al., 2013) have demonstrated the significant detrimental impact endometriosis has on women’s QOL in general, and several reviews have reported the significant impact endometriosis has on sex for women (Facchin et al., 2021; La Rosa et al., 2020; Missmer et al., 2021; Norinho et al., 2020; Pluchino et al., 2016; Zhu et al., 2023), with women reporting experiences of dyspareunia, sexual dysfunction, dissatisfaction, and distress (Rossi et al., 2021; Zhu et al., 2023). Studies have reported women with endometriosis to have moderate sexual QOL (van Poll et al., 2020), to have impaired sexual function (De Graaff et al., 2016) and that endometriosis negatively impacts on sexual QOL among women (Giuliani et al., 2016). Quantitative research reports sex to be the area of women’s lives most affected by endometriosis (Santulli et al., 2020) and qualitative research also demonstrates a detrimental impact of the condition on sex, intimacy and intimate relationships (Rea et al., 2020). Body image disturbance and lower self-compassion are also associated with greater sexual distress amongst women (Sullivan-Myers et al., 2023). Pluchino et al.’s review (2016) of sexual function amongst women and partners concludes that the evidence, albeit limited, suggests that “endometriosis appears to impact all domains of sexual function, desire/arousal, orgasm, satisfaction, and pain, leading to sexual dysfunction and distress in 70–75% of patients, at least in advanced/chronic cases” (p. 765). However, reports tend to be descriptive, with few studies considering the impacts in terms of endometriosis as a gendered condition and the ways in which experiences are shaped by conventions of heterosexuality and meanings of heterosexual sex (Ayling & Ussher, 2008; Fahs & Swank, 2016; Hare-Mustin, 1991; Schippers, 2007).

Commonly, studies focus on incidence and experiences of dyspareunia (Bernuit et al., 2011; Chene et al., 2012; Christian, 1993; De Graaff et al., 2013; 2016; Denny, 2004; 2004; Denny & Mann, 2007; Jones et al., 2004; Oehmke et al., 2009). Dyspareunia has been found to be associated with reduced sexual activity (Bernays et al., 2020), reduced sexual QOL (van Poll et al., 2020), sexual dysfunction and impaired sexual functioning (De Graaff et al., 2016; Fritzer et al., 2013), reduced ability to experience orgasm during intercourse (Hämmerli et al., 2020), and to have a negative impact on intimate relationships (Facchin et al., 2021). Despite some research identifying dyspareunia to have no impact on QOL or mental health (Facchin et al., 2015), overall the weight of evidence suggests a significant impact, albeit varying amongst women in terms of location, onset and character of pain (Wahl et al., 2021). Importantly dyspareunia also refers to pain after intercourse: Denny and Mann (2007) found that for 69% of women, dyspareunia included pain in the hours and days after intercourse. Responses to dyspareunia include avoiding or limiting sexual intercourse; starting but then stopping intercourse; changing positions; or enduring problematic intercourse (De Graaff et al., 2013; Denny & Mann, 2007; Helfenstein et al., 2023; Jones et al., 2004). Avoiding or limiting sexual intercourse can results in feelings of inadequacy, including feelings of being a “bad wife”, and guilt (Fritzer et al., 2013; Jones et al., 2004). However, there has been minimal in-depth exploration of these responses and management strategies, and the potential emotion work which may be inherent to them, nor of their gendered nature. Reasons for enduring problematic or painful sex include to conceive, to satisfy one’s partner, to achieve closeness with one’s partner and due to a reluctance to allow endometriosis to affect yet another aspect of life (Denny & Mann, 2007; Fritzer et al., 2013). Seear (2009) suggests that discussing the impacts of endometriosis on sex may constitute a breach of menstrual etiquette - which Laws argues include “implicitly understood social rules … that women may not draw men’s attention to menstruation in any way” (1990, p. 43) - due to the fact such impacts are rooted within menstrual problems. With the exception of Pluchino et al. (2016), whose adapted fear-avoidance model suggests that over time pain may result in a lack of desire, difficulties becoming aroused, withdrawal from sex and long-term sexual distress, few studies have provided an in-depth, detailed consideration of the nuanced and complex impacts of endometriosis on sex, on the expression of intimacy, affection and closeness and on the couple relationship. Furthermore, despite reports that dyspareunia is not the only factor impacting on women’s sexual health (Pluchino et al., 2016), the overall a focus on dyspareunia within research studies may obscure other ways in which endometriosis can impact upon sex.

A smaller body of work has explored the impact of endometriosis on sex from the perspective of women’s male partners, reporting that high proportions of partners of women with endometriosis (74-75%) identify endometriosis to have had a significant impact on their sex lives and their physical relationship to have suffered (Ameratunga et al., 2017; Fernandez et al., 2006); as well as partners reporting dissatisfaction with sexual lives (Hämmerli et al., 2018), having refrained from having sexual intercourse because of the impacts of endometriosis, and decreased libido (Santulli et al., 2020). Lower sexual satisfaction amongst women is found to correlate with male partners reporting a greater impact of endometriosis on their lives; indicating significant interdependence between sexual satisfaction and psychological wellbeing within partnerships and across partners (Schick et al., 2022). Studies also suggest male partners are preoccupied with concerns about hurting their female partner, and that sex and intimacy are profoundly affected (Margatho et al., 2022). Research with women suggests some perceive their partners to be frustrated by the impact of endometriosis on sex, and to interpret women’s resistance to engaging in sex as an excuse to withdraw from their sexual “duties” (Seear, 2009). De Graaff et al. (2016) found no differences in sexual function between partners of women with endometriosis and partners in a control group, and conclude that men’s sexual function is unaffected by endometriosis, although they do acknowledge that the measure used in their study (the International Index of Erectile Function) may not capture the full range of impacts which partners of women with endometriosis experience. Research also suggests a high proportion of partners may be unaware of their partners engaging in intercourse despite discomfort (Helfenstein et al., 2023). Overall, reviews of studies conclude that impacts of endometriosis on male partners “may be profound, affecting many life domains including sex, intimacy and the relationship in general” (Norinho et al. 2020, p. 197) and that partners’ sexual wellbeing is compromised as well as women’s (Rossi et al., 2021), but the evidence base upon which such assertions are made is minimal and the vast majority of investigations of the impacts of endometriosis on sex and intimacy focus solely on women.

In addition, despite a growing body of work recognising the impacts of endometriosis on couples (Hudson et al., 2016; McKay et al., 2021; Van Niekerk et al., 2021) and its status as a “we-disease” (Facchin et al., 2021) most studies pay scant attention to how the impacts on sex are experienced as relational phenomena and how they affect wider relational issues such as relationship satisfaction or quality, intimacy, closeness and affection, communication, and stress and distress. One US based study (Butt & Chesla, 2007) of couples living with endometriosis reports the impact on sex and intimacy to be of primary importance, resulting in significant grief and distress, with couples having received little information or support in the face of sexual difficulties, and to instead be “on their own in a field of unknowns” in managing these impacts (p. 582). Amongst studies with women, De Graaff et al. (2016) report that 52% of women are afraid to lose their partner because of the impact of endometriosis on sex, while Rea et al. (2020) report endometriosis to result in a “disastrous intimate life with one’s partner” (p. 1). However, amongst the (minimal) body of research into the impacts of endometriosis on relationships the focus tends to be on the broader experiences and impacts of the condition (Van Niekerk et al., 2021), and few studies consider the ways in which sexual difficulties affect quality of relationships specifically. As Pluchino et al.’s review (2016) argues, research on endometriosis and sex tends to explore the occurrence and intensity of dyspareunia with the result that the “overall sexual function and quality of the relationship with the partner are often under-investigated” (p. 763).

Overall the body of research into endometriosis and sex demonstrates a considerable impact on women and women’s experiences of sex. However, considerably less attention has been paid to partners. Alongside this, studies also typically fail to situate the impacts of endometriosis on sex within the context of relationships, considering, for example, impacts on intimacy, closeness and affection. The research evidence - largely drawn from quantitative studies - is predominantly focused on dyspareunia, overlooking other ways in which the condition may impact on sex and intimacy; while this can offer useful insights into the prevalence of sexual problems and their correlations with other factors, qualitative work may be better positioned to enable nuanced and detailed insight into this complex phenomenon. In particular, the specific ways people with endometriosis and their partners respond to and manage the impacts, and the ways in which these responses are shaped by wider gendered discourses, have received minimal attention.

This paper reports findings from qualitative research with heterosexual women and their male partners in order to demonstrate the complex and nuanced ways in which endometriosis can impact upon sex and intimacy. In doing so it demonstrates the importance of taking a couple-focused, relational and gendered approach in order enhance understanding of the range of ways in which endometriosis can affect sex and intimacy and therefore the couple relationship; and the ways in which heterosexual women’s and couples’ experiences, as well as how they navigate and manage these impacts, are shaped by particular, gendered discourses. After providing an overview of methods used, the paper goes on to report findings from the study specifically focusing on women’s experiences, men’s experiences and the impact at the relational level. It then goes on to discuss these findings in particular considering how women’s and couples’ experiences are shaped by conventions of menstrual etiquette (Laws, 1990), perceptions of male sex drive (Ayling & Ussher, 2008), and practices of emotion work in sex (Fahs & Swank, 2016).

Materials and methods

The ENDOPART study was a UK-based, cross-sectional, qualitative study designed to explore the experiences of heterosexual couples living with endometriosis, taking a relational, dyadic perspective. The aims were to explore the impact of endometriosis on women and their male partners; to contribute to theory development in chronic illness; and to improve the well-being of people living with endometriosis by providing an evidence base for improving couple support. The study comprised three phases: in phase one a literature review was undertaken (Culley et al., 2013) and interviews with key informants (n = 11), including healthcare practitioners, women with endometriosis and their partners and support group representatives, were conducted; phase two was the main phase of the study and comprised in-depth, semi-structured, one-to-one interviews with women with endometriosis and their male partners (n = 44); in the final phase a stakeholder workshop was held to inform the recommendations and outcomes from the study. This paper presents findings from phase two only. Ethical approval was received from the host university and the East Midlands Leicester NHS Local Research Ethics Committee UK (reference 12/EM/0015). Participants were provided with written information about the study and gave written, informed consent.

Couples (n = 22) were recruited to the main phase (phase two) of study via the national charity Endometriosis UK (n = 11), NHS clinics (n = 5), other support or information groups or organisations (n = 3), and word of mouth (n = 3). Inclusion criteria were a laparoscopic diagnosis of endometriosis, the presence of symptoms for at least a year and that partners were living together at the time of interview. The study focused on heterosexual couples specifically in order to explore the implications of the gendered nature of endometriosis for both women and men and the impacts of and implications for gendered scripts enacted within heterosexual relationships. As previous research had revealed ethnic differences in the experience of endometriosis (Denny et al., 2010) a sub-sample of South Asian couples (Pakistani, Bangladeshi and Indian) was purposively included.

Of the 22 couples who took part, the mean age of the women was 34.8 years (range: 25–50) and the mean age of the men was 36.3 years (range: 26–57). Among the women, 14 were White British, 6 were South Asian, 1 was mixed White/Asian and 1 identified herself as “White other”. Among the men, 13 were White British, 6 were South Asian and 3 identified as coming from “White other” ethnic backgrounds. At the point of interview, the mean length of relationship was 9.1 years (range: 3–21 years). The mean length of time since onset of symptoms was 13.6 years (range: 2–37 years) and the mean length of time since diagnosis was 4.5 years (range: 1 month–20 years).

In-depth, semi-structured, one-to-one interviews were conducted. Women and their male partners were interviewed separately and, in most cases, simultaneously by different interviewers (see Hudson et al., 2018). Interviews lasted between 50 and 113 min (mean 78 min). The interview guide covered a variety of topics particularly focusing on the impact of endometriosis on everyday life and on relationships including participants’ experiences of sex and intimacy. Interviews were recorded, transcribed verbatim and entered into NVivo for analysis.

Data were analysed thematically (King & Brooks, 2018) using NVivo. A coding framework was drafted by one researcher, informed by the literature review, the interview guide and inductively dervied codes developed via open coding of the full dataset. This framework was then reviewed in relation to a sample of the data by five researchers, and amendments made. A sample of data was then coded by two researchers, using the NVivo coding comparison function to measure inter-coder reliability, and the coding framework was refined and finalised as a result. Following this, the entire data set was coded systematically and an overarching thematic description of the data set was produced. Separately, and following the thematic analysis, data pertaining to themes identified to be particularly significant at the couple level were then also analysed dyadically, taking each couple as a “unit of analysis” and exploring contrasts and overlaps in partners’ accounts (Eisikovits & Koren, 2010; Hudson et al., 2018).

In recognising the situated and contextual nature of meaning, the ways in which analysis necessitates active decision making, and the influence of subjectivity (Braun & Clarke, 2019), the process of analysis adopted a reflexive approach. Such an approach included striving for a deep awareness of the ways in which the researchers’ structural positions (in terms of, for example, gender, sexuality, ethnicity etc.), their positioning in relation to the study topic and the participants, and their prior assumptions will have shaped data collection and analysis. Team analysis days entailing reflexive discussions about researchers’ engagement with the data and their evolving interpretations allowed for such an awareness to develop; such a process allows for “questioning and querying [of] the assumptions we are making in interpreting and coding the data” (Braun & Clarke, 2019, p. 6). For example, while recognising that a number of social signifiers can shape interviewer–interviewee relations and that precise implications are difficult to identify (Hudson, 2012), that all interviewers in the study were women and did not themselves have endometriosis will have had an impact on the interview dynamics and the analysis of the data, and this was discussed and critically reflected upon throughout the process of analysis.

Data coded to the theme of sex and intimacy are reported in this paper. In reporting quotes from participants, descriptive labels, identifiers or pseudonyms have not been used in order to maintain anonymity within the couple unit (i.e. to prevent participants from identifying quotes from their partner) (see Hudson et al., 2018).

Results

Endometriosis and sex: impacts of physical symptoms, frequency and changes over time

All 22 couples reported that endometriosis had in some way affected their experiences of sex and intimacy. Women and their male partners spoke of a range of impacts: while dyspareunia was common - being reported as a symptom by 19 of the 22 women, although the severity and frequency varied - it was by no means the only aspect of endometriosis that impacted on couples’ sex lives. Other aspects included long, heavy and/or frequent periods, dysmenorrhea, pelvic pain, feeling unwell generally, fatigue, sex causing bleeding either during or after sex, nausea and sickness, side effects of medication including loss of libido, low mood, feeling unattractive, stress relating to difficulties conceiving, feeling “fragile”, bloating and bowel problems.

[It impacted on sex due to] mostly pain and because I was just completely exhausted and I didn’t feel good about myself. It is very personal but I constantly had a horrible discharge, you know, and I just felt disgusting and crap really … you just don’t feel attractive. (Female participant)

Over the last two years [we’ve] probably [had sex] once or twice a month because I just couldn’t bear the pain of having sex … it was the sheer agony; it was like somebody putting a knife in me, like every time he penetrates the bowel pain would send electric shocks down my legs. (Female participant)

While pain during sex was common, many women spoke about the pain they experienced after having sex—and for some this was a bigger problem.

There have been times when it’s been fine and other times when the pain not during but after has been horrendous and other times when I’ve bled afterwards which has been horrendous. But generally during [sex] the pain isn’t an issue. (Female participant)

However, the ways in which it impacted, the extent of the impact and the implications varied significantly. For some couples the impact on sex and intimacy and on their QOL individually and as a couple was extensive and devastating, as discussed below; for others the impact was minimal.

For approximately half of the couples sex was reported to be rare or non-existent, either at the time of the interview or in a recent phase. Other couples continued to have sex, but it was reduced and others continued regardless. The impact of endometriosis on sex and intimacy was also dynamic: it shifted and changed over time. Participants spoke about past phases of sex and intimacy which they contrasted favourably or unfavourably with their present experiences, and spoke about their hopes and fears for the future. Commonly the changes over time related to the impacts of treatment, with changing treatments bringing either relief from symptoms or new detrimental impacts on sex.

Once she went on that pill prescribed by [consultant], it was wonderful. Well, yes, I mean there was no pain and so, yes, we enjoyed an active and vigorous love life. But as things have deteriorated, particularly really I think since the Mirena coil, the pain has increased and so, yes, we don’t make love as often as we did. (Male participant)

Alongside this, reproductive desires and experiences had a considerable impact on couples’ experiences of sex and intimacy and the ways in which it changed over time. For example, for some couples the stresses associated with difficulties conceiving had a detrimental impact on sex, whereas for others desires to conceive meant some couples had sex despite pain in order to try to conceive.

Infertility is so tied up with sexuality, it’s tied up with feeling good enough, it’s tied up with feeling attractive, it’s tied up with feeling defective … That feeling of that intense disappointment of the infertility treatments not working, at the conclusion of each failed cycle of IVF treatment, that’s just such a libido killer, it really makes, it just twists something, it takes out of the emotional content of having sex. (Male participant)

I would just be like, ‘I’m only having sex during this time because this is my fertile time, any other time you can forget about it’. It became like that a) because it was painful and b) it was just like, well no because, it became, it was just about having a baby. (Female participant)

Impact on male partners³

Male partners were acutely aware of the potential for pain during sex and spoke at length about feeling hesitant and tentative, and feeling cautious and worried about causing their partner pain. Female partners also spoke in detail about their partners being reluctant to have sex due to fear of causing pain. This also gave rise to feelings of uncertainty amongst men who worried whether their partners would be in pain and what the right thing was to do. Men also did not want to risk engaging in sex to make their partners’ gynaecological health worse.

It got to a stage where neither of us would bother trying because I would always be very very wary and try to be as patient as I could. And then I wouldn’t try because it would be like it’s going to be pain to you and the last thing I want to do is for her to be in pain. (Male participant)

From my perspective, you’re never quite sure if she says, ‘yes OK I’ll try’, but is she just saying that because she doesn’t want to say the wrong thing? And then of course you’re reluctant because you don’t think you’re doing the right thing. You don’t give up because that would be, because I think mentally that wouldn’t have done her any good. She would have just thought I was just being too, I don’t know, over caring about it or over worrying about it. So I think we both knew in our hearts that we were trying to please each other, but there was always that air of, I’m just not sure, is it the right thing to do? (Male participant)

However, in some cases their reticence to engage in sex was, they perceived, interpreted as them rejecting their female partner.

Male participant: The biggest thing is that causes the arguments is me not trying because I’m scared of hurting her.

Interviewer: And then that being interpreted as you’re not…

Participant: Don’t want her … that’s caused a few arguments. (Male partcipant)

She’s never complained of any pain during sex but it has kind of affected that side of things because I try to from, since I found out that she’s got a lot of complications I’ve kind of tried to cut down and I think that has affected her as well mentally because she seems to think that I don’t want to sleep with her in that sense anymore. But I told her that’s not the case; it’s just purely that I don’t want to complicate things further for her. (Male participant)

Some men reported feeling guilty (or their partners suggested they felt guilty) if they did engage in sex. One male partner likened having sex with his partner to abuse.

You almost feel, I wouldn’t say quite like it because obviously I’ve never done it, but you must feel like you’re abusing that person, almost like a sort of rape, you know. (Male participant)

A small number reported feeling frustrated if sex was infrequent.

Well I am not going to lie it can be frustrating, I am a young guy and like any young guy I get frustrated when your partner’s sex drive, or ability to have sex without pain, doesn’t match your own. (Male participant)

While men may have been unhappy about the impact of endometriosis on sex and intimacy, and while a minority reported a lack of sex as very problematic for them, it was common for men to report that, over time, they had come to understand and accept the need for a change in their sexual relationship and had some acceptance of this. Men discussed how they and their partner had had to work not only on finding strategies to improve their experiences of sex, but also to reframe what sex means and see it in new ways.

I don’t think we have a bad sex life, it’s just a different sex life, we just have to work at it … It made me think about sex in a different way being with [partner], different to what it was with my past partners, sex is an important part of a relationship but it’s not the be all and end all … it’s probably quality more than quantity. And what we have worked out within these limitations is great, it just takes a little bit more work for a couple. (Male participant)

Essentially it’s just too painful for her, so we can’t have a sex life … it’s difficult but we’re adults and you learn to deal with these issues, simple as that. (Male participant)

Often, this acceptance was discussed in terms of how it would be “unreasonable” or “selfish” of them not to accept it. Only a small proportion of men appeared comfortable in expressing simultaneously that while they were understanding and accepting, they also experienced dissatisfaction and loss. Overall, men seemed cautious about expressing dissatisfaction with the impact of endometriosis on sex and intimacy, not wanting to appear to “blame” their female partner or to be selfish or unreasonable.

It doesn’t cause big arguments and fights because I’m not getting it or whatever because the reasons are there and there are genuine reasons. It would be unreasonable then of me to not take notice of that and say come on, I need sex, or my conjugal rights or whatever. So no, we work on it, and if [partner’s] feeling ok we’ll see how it goes. (Male participant)

It’s just like hey, not a problem, crack on, that’s not the be all and end all really … I’d be a pretty shit husband if I was like well this is rubbish isn’t it, I didn’t sign up for this, and it was all good when we first met. But it’s, like I say, a phase and you’ve just got to take it on the chin really. (Male participant)

Most men perceived that they did not pressure their partners for sex, and that the choice as to whether the couple had sex was the female partner’s choice. Some explicitly stressed to their partner that she should be forthcoming and honest about dyspareunia.

I have said to her in the past ‘if you are not feeling good I want you to tell me, it’s not going to be the end of the world for me’. I would rather her be open about it and us do it not very often and it be great for both of us, rather than me get my end away and she is in pain, it’s horrible I can’t stand that. (Male participant)

Impact on female partners

Women spoke more than men about the impact of endometriosis on sex and intimacy and their unhappiness with the situation. Commonly (but not exclusively), women in the sample appeared deeply troubled about the impact of endometriosis on sex and intimacy, and discussed their feelings of turmoil, distress, sadness and loss. Women contrasted their own situations with their perceptions of what a “normal” sex life might constitute.

It’s just such a different way to how most people have sex and it makes it clinical. (Female participant)

I feel bad, I do feel bad that we probably haven’t got as they say a normal sex life to say like our other friends and couples and stuff like that. So it makes me feel bit, it does have that feeling like ‘god I’m not normal’ at times. (Female participant)

Several women felt sorry for their male partners, and some felt guilty. Two women discussed how not being able to have sex, along with other impacts of endometriosis, made them feel inadequate as wives. Women were acutely aware of their partners’ feelings and needs; they perceived that their partners felt frustrated and/or a sense of loss, which fuelled their concerns.

[Partner] is very much like I am 30 I should be having sex all the time, but he is so sensitive he very rarely says that. He is just lovely and really understanding and that’s why most of the time, all of the time, I feel bad that we don’t have it more. (Female participant)

Occasionally we’ll talk about the sex life or lack of and he will talk about that and he’ll say ‘it’s not your fault and you can’t help it but oh [name], it’s a shame we can’t.’ And he misses that side of things. And I’ll say ‘oh I’m so sorry love’. I do have guilt. (Female participant)

I feel incredibly sorry for him that there is no way I could have warned him when we met how bad it was going to be. (Female participant)

The impacts of endometriosis, and particularly dyspareunia, meant that some women had to make a difficult choice between avoiding sex, which resulted in them feeling guilt, loss and worry about how this would affect the relationship, or enduring painful or problematic sex in order to be intimate and close with their partner. A small proportion of women reported that at times they endured painful or problematic sex in order to meet their partners’ perceived need for sex and intimacy, to enhance intimacy and closeness in the relationship, to feel like a ‘normal’ couple or, for some, to try to conceive. Four women reported that they engaged in ‘emotion work’ (Fahs & Swank, 2016) by concealing or downplaying instances of, or the extent of, dyspareunia from their partners, or had done so in the past, in order to minimize the impact of endometriosis on their relationships.

Interviewer: You don’t tell him how painful it is?

Female participant: No, no I don’t, I don’t, in fact if I did he would never touch me again and that would be strange. (Female participant)

I kind of tried to put on a brave face, you know, you want to do it, you know, I wanted to do it, I wanted to, it was the one thing I felt I could do for [partner], do you know what I mean? It was really difficult. And I’d kind of like put on a brave face and he’d be, ‘oh god am I hurting you, am I hurting you?’ And I was like, no. It wasn’t how it should be, you know, it was, oh. And then for two days later I’d be walking around clutching my stomach in agony and, you know, afterwards I’d be bleeding. (Female participant)

One woman reported that she engaged in sex even knowing it would be painful afterwards not to please her partner, but in response to her own sexual desire and enjoyment.

We wouldn’t stop having sex just because it hurt [afterward], I like it too much. (Female participant)

A minority of women appeared to feel some pressure and obligation to engage in sex, although this manifested in complex and subtle ways, and while in some cases this clearly arose from their male partner’s behaviours in other cases the partners’ influence was not easy to decipher. Such women spoke about tacit understandings that the reduced frequency of sex was problematic.

He used to get really withdrawn and he was a bit of a sulker … but I’d never feel under pressure. I wouldn’t feel under pressure but because of like the sulky sort of tendency, I think, oh yes, you know, I knew in my head. And we’d never really talk about it but I knew, you know, it was time to kind of do the deed. It’s sad, it is really sad to think, you know, where we got to. (Female participant)

And I constantly feel like I have got to get it done, got to get it done, when I am feeling ok. So when I am feeling fine I am stressed because I need to get it done before I am having my bad fortnight of the month or whatever. (Female participant)

However, these instances of endurance, concealment and feelings of pressure were only reported by a minority of women and even amongst these women these experiences were infrequent: they did not endure painful or problematic sex, conceal dyspareunia or have sex due to feelings of pressure and obligation regularly or routinely, but rather employed these strategies from time to time. Overall, the majority of the women reported instead that dyspareunia and other impacts of endometriosis resulted in them not having sex; for some this applied to certain times and not others; for other women this was consistent. While some reported feelings of guilt and sorrow for their partners, others were unapologetic, displaying a matter-of-fact tone and not framing the issue in relation to their partners’ needs. These women appeared to resist, or simply did not engage in, ideas of being obliged to engage in sex.

I am the person that’s making the decisions … if I don’t want to, if I am tired, or if it’s painful we just don’t because I don’t want to. (Female participant)

If I know it’s going to be really bad during then yeah I’ll stop straight away, I won’t just carry on. (Female participant)

Women not only expressed feeling sorry for their partner: a small minority expressed their own feelings of loss relating to sex and framed this in terms of their own sexual desire and disappointment. They discussed having wanted to have a more “normal” sex life, to have more sex and to experience enjoyable sex and discussed their own feelings of frustration.

I would have liked to have had lots more sex in my life. (Female participant)

Sometimes I think oh I’m ok and then suddenly pain so, bless, we stop and that’s really frustrating for him obviously and for me as well. (Female participant)

However, these instances were in their minority. More commonly women were concerned with their partners’ wellbeing and ideas of male sexual needs loomed large.

The management of sex and intimacy which women undertook, and in particular the emotion work women engaged in, was a complex workload. In particular many women were acutely aware of not only their partners’ sexual desire, but of the feelings of hesitancy, caution and tentativeness which dominated many men’s engagement with sex. Women engaged in delicate and complex work to ease men’s worry and hesitancy and to reassure them that they could engage in sex without fear of causing pain.

Pain during sex and then after it, so many times I’ve had sex and then within a couple of hours I’m in hospital. It’s him he finds it really difficult; he can’t, like even if I want it, even if I’m feeling ok, it’s for him he feels like he’s going to cause me more pain, like it’s not worth doing that. So trying to find a time when I’m not in pain and haven’t been in pain for a bit or hidden it from him for a bit. So for him to feel confident enough that it’s not going to [hurt me] … I try to not show him as much so then he feels better … to try then reassure him and then of course afterwards if I’m in pain you try and hide it because you don’t want them to see that they’ve caused that. Because it’s not like that, it’s I mean every couple wants to have each other don’t they but if it’s always in his mind that he’s causing me pain then he’s never going to enjoy it. (Female participant)

We used to say to each other, and he goes, ‘no I don’t want to hurt you’, it was like, alright then. I’d be like, ‘no, no, no, I’m fine’. He’s like, ‘no, no, no I don’t want to hurt you’ … even afterwards he’d be like, ‘have I hurt you?’ ‘No it’s fine’, I go, ‘it’s alright, I’m fine, I’m normal’. (Female participant)

The relational impact: the effects on relationships and couples’ coping strategies

The complex ways in which endometriosis affected sex and intimacy resulted in considerable disruption and loss, as well as profound stress and distress, for several couples. While for other couples the impacts on sex and intimacy were minimal, those couples who were affected to a significant degree found the impacts were both profound and devastating. For some couples, their sex lives had become a minefield fraught with difficulties and tensions.

Women, more than men, reported a significant loss of intimacy, closeness and affection. For some couples reduced sex, or abstinence, was accompanied by a loss of other forms of expressing and sharing physical intimacy and closeness, such as kissing and cuddling, leaving partners feeling distant from one another.

It’s [sex] is not worth the pain, you kind of get in that mindset. So you go to bed and you avoid the kiss and the cuddle so then you get the hump with each other and then he starts avoiding me with the kiss and the cuddle. (Female participant)

You kind of like lose the, like your sex life, we’ve kind of lost that completely really. And then you feel like you’re drifting apart almost because you haven’t got that closeness. (Female participant)

That physical side had just gone and we didn’t hold hands or hug or anything, and it was just lost. (Female participant)

A minority of women spoke about how endometriosis pain more generally (i.e. not dyspareunia specifically) meant they did not want to be touched, be cuddled or engage in any forms of physical closeness. They also appeared to resist engaging in any form of physical closeness for fear it may be a “slippery slope” towards potentially having sex, or having to deal with the situation of refusing sex.

We used to be really close and I thought it’s put a divide between us because I couldn’t bear him touching me. And he would get upset because obviously I wouldn’t even let him cuddle me because if it hurt my stomach and he put his arm round me I used to push him away because it hurt. And I think it just put a like a bit of a divide, I felt it put distance between us. (Female participant)

Even like a simple kiss and a cuddle, I’m probably a bit more, ‘oh get off me’ … I’ve probably spent so long going, don’t touch my stomach, don’t do this, don’t come near me, whereas in a way I’ve probably pushed him away in one sense. But I could probably be a bit more affectionate I suppose … I probably feel as if one thing will lead to another and I just think, oh I don’t want, you know, I don’t want that side, I don’t want that. (Female participant)

While some couples reported that they did discuss the impact endometriosis had on their sex lives between them, and could communicate well about this, it was more common for couples to say they did not discuss this very much. For a minority of couples, there was significant mis-communication and non-communication which resulted in tensions, arguments and distress. For others not talking was a deliberate strategy. Some suggested it was difficult to talk when there appeared to be no solutions to be found; the situation seemed helpless to some couples and so talking appeared futile and to risk making things worse.

We do talk about it but it’s always when it’s too late rather than before me saying anything or my partner saying anything, we both just leave and leave it and leave it. Then a bit of an argument and then it’s sorted, back to normal for a couple of months and then it starts again. (Male participant)

It would have been really, really hard to talk about it before the operation because I knew all the constraints. I think if I’d have tried to talk about it, and moaned about it, moaned about the lack of it or whatever, you know, that that wouldn’t have been productive. (Male participant)

If we talk about it then it gets worse. It’s more of a problem; it’s more of a thing in his mind about it … I’d love to be one of these couples who put everything on the table and say this is how it is, this and this and this but it’s just not how we work. (Female participant)

For these couples, non-communications often resulted in misunderstandings: for example, and as discussed in the sections above, when one partner was reluctant to initiate sex for fear of pain, the other may interpret this as rejection. Because partners did not fully communicate how they felt to one another, women and men were left to “second guess” how their partner felt and behaviours were open to misinterpretation.

Some couples talked about strategies they engaged in to make sex and physical intimacy less painful and more enjoyable. These generally related to varying positions and angles, having non-penetrative sex, choosing times of the month when pain would be reduced, or drinking alcohol to promote relaxation—although this had negative effects on other endometriosis symptoms. Men in particular spoke of engaging in positions which would reduce pain and discomfort for their partners and of engaging in non-penetrative sex (something they alluded to rather than spoke of explicitly).

Male participant: There are other ways round it and there are other things you can do.

Interviewer: Things other than penetrative sex do you mean?

Participant: Yes, lots of other things. Men are pretty simply creatures as long as we get an orgasm we don’t care how we get it … there are still plenty of other stuff you can do to help satisfy one another, and that’s the kind of stuff that we talk about. Ok we can’t do that but we can do this, if you are alright with that then let’s do that. (Male participant)

You are limited in terms of certain positions, the physicality of the whole thing can be a real struggle for [partner]. So we have to choose a certain position that is not going to be [in pain]. (Male participant)

Interviewer: How have you dealt with that aspect?…

Female participant: It’s really difficult, I get drunk! … And the drink doesn’t help the pain so the next day it’s horrific. So it’s kind of like a catch 22, it’s not really a solution at all. (Female participant)

However, one man explicitly articulated that if his partner does not want to engage in penetrative sex, she is also unlikely to be in the “mood” for other sexual acts.

Essentially it’s just too painful for her, so we can’t have a sex life, in that sense if it’s penetrative sex and to be quite honest that level of pain, she’s not really interested in any other side of sex. (Male participant)

While both women and men worked to reduce the impacts of endometriosis on sex and intimacy, overall participants appears to approach these efforts individually rather than working together as a couple.

In spite of these sometimes intense difficulties, very few couples had been given information about the possible impact on sex and intimacy and few had sought or been offered help from healthcare practitioners with the sexual implications of endometriosis or its treatment side-effects.

Interviewer: Have you ever talked to anybody, any healthcare professionals or support organisations about this issue?

Female participant: No, no, it hasn’t occurred to us to go and talk to anybody about it. No we just live with it and just take it day by day really. It’s sad isn’t it. (Female participant)

Only one women and one couple reported having received treatment and support from healthcare practitioners and neither had had positive experiences. One woman described being issued incorrect medication for lack of libido and having to battle for the (more expensive) medication she had originally been prescribed; and described how despite eventually receiving the correct medication and experiencing increased libido, the dyspareunia remained. Another couple engaged in sex-focused counselling, but found it an uncomfortable and unhelpful experience.

Discussion

The results from this study demonstrate the impacts of endometriosis on sex and intimacy are complex and multifaceted, are not limited to dyspareunia, and have a considerable impact on not only women but also their male partners as well as the couple relationship. While existing research focuses on the impact of endometriosis (particularly dyspareunia) on sex amongst women, the current study indicates the detrimental impact that symptoms of endometriosis (including but not limited to dyspareunia) and its treatment can have on partners’ expressions of and couples’ experiences of not only sex but also intimacy, closeness and affection. While recognizing that not all women with endometriosis are heterosexually partnered, and that the experiences of single women and those in same sex couples are equally important, the present study considered the ways in which some heterosexual women (and couples) experience endometriosis as a relational disease (Facchin et al., 2021; Van Niekerk et al., 2021) and one which is shaped by conventions of heterosexuality. Discussions of female sexual desire were minimal in the data, while discourses of men’s sexual needs underpinned participants’, especially women’s, narratives. This discussion considers how conventions of menstrual etiquette (Laws, 1990), discourses of male sex drive (Ayling & Ussher, 2008) and practices of emotion work (Fahs & Swank, 2016) shaped women’s and couples’ experiences of sex and intimacy, and shaped the ways in which they navigated and sought to manage the impacts arising from endometriosis.

The present study illustrates how women and couples experience, navigate and manage the impacts of endometriosis on sex and intimacy in particular, gendered ways. As Seear (2009) suggests, couples’ negotiation of the impacts of this gynaecological condition are situated within conventions of menstrual etiquette, which Laws argues include “implicitly understood social rules … that women may not draw men’s attention to menstruation in any way” (1990, p. 43). Seear (2009) suggests that discussing the impacts of endometriosis on sex, including with partners, may constitute a breach of menstrual etiquette: in her study women reported that when they disclosed dyspareunia to their partners, men took a critical and divisive stance, expressing frustration and interpreting women’s resistance to engaging in sex as an excuse to withdraw from their sexual “duties”. Men in the present study appeared to take a less critical stance and to display greater levels of understanding and acceptance, although some did report feelings of frustration. However, conventions of menstrual etiquette (Laws, 1990) may have contributed to the difficulties many couples encountered in discussing the impacts of the condition on sex and intimacy, and the ways in which couples might address these including finding alternative ways to express affection and achieve intimacy; it may have underpinned the mis-communication and non-communication evident within some couple units, and the potential for partners to guess and potentially misinterpret one another’s feelings and the resultant tensions and distress. It may also have underpinned the ways in which women and men appeared to seek to address and minimise the impacts individually rather than, on the whole, addressing this collaboratively as a couple unit (although this may have also been partly the result of individual interviews eliciting a more individualised narrative).

In addition, Denny (2004) suggests that amongst undiagnosed women experiencing menstrual irregularities, conventions of menstrual etiquette may hinder their efforts in discussing their symptoms with doctors who display dismissive attitudes, thereby contributing to delayed diagnosis. Similarly, in the present study the virtual absence of conversations between couples and healthcare practitioners about the impacts of endometriosis on sex and intimacy may be in part attributable to conventions of menstrual etiquette and such conventions may also have hindered couples’ willingness to seek support outside the couple unit. As such, any endeavours to better enable couples to communicate about and address the impacts of endometriosis on sex and intimacy, and any initiatives to enable couples to better access support, need to be grounded in an understanding of how conventions of menstrual etiquette may shape encounters.

The data suggest both women and men engaged in efforts to reduce the impacts of endometriosis on sex and intimacy. Many men appeared responsive and sensitive to the experience and wellbeing of their partners. Several appeared to deprioritise their own sexual needs in order to prioritise their partner’s wellbeing, and men worked to accept the ways in which endometriosis had shaped their sex lives and worked to reframe what sex means to them, constituting specific types of biographical work (see Hudson et al., 2016). Women’s management of endometriosis, sex and intimacy are illustrative of specific types of emotion work. Amongst women in general (i.e. not specifically women with endometriosis) the emotion work which women engage in in heterosexual sexual relationships - including tolerating sexual pain, defining sexual satisfaction based on their partners’ pleasure, and accepting what they perceive as “bad sex” but from which their partners derive satisfaction - has been reported to be common in heterosexual relationships (Fahs et al., 2020; Fahs & Swank, 2016). In the present study, a minority of women demonstrated their engagement in such work, particularly by tolerating (and for some concealing) sexual pain and enduring problematic sex. However, the present study suggests that the experience of endometriosis might also result in forms of emotion work which are somewhat different in nature and are shaped by women’s perceptions of men’s feelings of worry and hesitancy. Beyond tolerating and concealing sexual pain and enduring problematic sex, in the face of men’s worry and hesitancy women engaged in complex, delicate emotion work, shaped by their perceptions of their partners’ sexual desire, in order to ease men’s caution and tentativeness and provide reassurance about engaging in sex without fear of causing pain. Contrary to previous studies of women in general (Fahs & Swank, 2016), women with endometriosis in the present study reported their motivation for such practices not to be to provide partners with feelings of power, skillfulness and dominance but instead primarily to ensure partner satisfaction, as well as to enable intimacy within the relationship and to engender feelings of being a “normal couple”.

Reports of emotion work in heterosexual sexual relationships (Fahs & Swank, 2016), and on sexual desire (Fahs et al., 2020) paint a depressing picture of male domination and female subordination and submission deeply embedded in practices of heterosexual sex (Hare-Mustin, 1991; Schippers, 2007). Dominant discourses of femininity and heterosexuality “position men as having a driven need for sex, and uphold coitus as the organizing feature of hetero-sex” (Ayling et al., 2008, p. 294). Similarly to women in Seear’s (2009) study, some women in the present study considered their male partners’ sexual desires as natural and inevitable (Schippers, 2007) and that the performance of sex was something they were obligated to, inherent to their role as wife or partner (Fahs et al., 2020). As such the prioritising of their male partner’s (perceived) sexual desires over their own may be considered an expression of such submission amongst these women. However, and less pessimistically in terms of gendered sexual inequality, many women in the present study did not passively and consistently deprioritise their own sexual wellbeing in order to prioritise partner sexual satisfaction but instead displayed resistance to such emotion work by not engaging in sex and, for some, taking a matter-of-fact, guilt free stance on this - albeit having to accept the loss of intimacy and the detrimental impacts such resistance had on QOL at the couple level.

Conclusion

This paper has presented novel qualitative data illustrating the complex and multifaceted ways in which endometriosis can affect sex and intimacy for heterosexual women, their partners and the heterosexual couple unit, as well as demonstrating how these experiences are gendered and relational. It has illustrated how the ways women and couples navigate and manage these impacts are shaped by (heterosexually orientated) conventions of menstrual etiquette, discourses of male sex drive and practices of emotion work.

The paper has implications for the provision of appropriate care and support for couples living with endometriosis. Findings demonstrate the virtual absence of conversations between couples and healthcare practitioners regarding the impacts of endometriosis on sex and intimacy, despite its complex and sometimes profound impacts. In order to address the sometimes devastating impacts of endometriosis on sex, intimacy and sexual QOL, healthcare practice and endometriosis management policies must address the emotional, sexual and relational impact of the condition, taking an holistic, biopsychosocial and gender inclusive approach to endometriosis management. The findings also have the potential to enhance sex- and relationship-focused therapy: practitioners working with women and couples with endometriosis need to be aware of the complex ways in which endometriosis can impact on sex and intimacy for both partners; as well as heterosexually-oriented conventions which may shape couples management strategies and inter-partner interactions. Practitioners may be well placed to support partners to address the impacts and put strategies into place collaboratively, as a couple unit. Finally, the findings demonstrate the urgent need for the development and testing of tailored solutions and interventions to better enable couples to cope with the impacts of endometriosis on sex and intimacy.