Supporting men who support women with endometriosis ‘ I enjoy it a lot when she enjoys it . . . ’

A qualitative approach permits the formulation of complex and delicate questions to elicit men’s perspectives of their very private sexual experiences to address the dearth of knowledge on the impact of endometriosis-caused dyspareunia on male partners. 42 De Graaff et al. 39 support qualitative research as necessary, as the quantitative research does not fully explain the outcomes in their study. Morse observes that qualitative health research ‘gives voice’ (p. 64) to the participants and in this study it was men’s voices we sought. 43Interpretive description informs this research. Interpretive description better addresses complex experiential clinical questions, while maintaining sufficient rigour to ensure academic credibility and explore ‘applied health knowledge or questions “from the field”’ (p. 28). 44 The data generated will assist couples to better negotiate the sensitive topic of dyspareunia due to endometriosis as well as inform health professionals of the need to raise sexuality in consultations. Semi-structured interviews facilitated a conversational dialogue exploring participants’ thoughts, feelings and behaviours. 45 In-depth interviews are useful in eliciting complex and nuanced experience from those who are marginalised. 33,46 Men partnered with women with endometriosis could be seen as peripheral (and understandably so) to their female partners struggling with the chronic and debilitating condition that is endometriosis. 33 Yet, we argue it is important to the wellbeing of the relationship to acknowledge and explore the impacts of endometriosis on the well partner. The key interviews domains were: • Impact of dyspareunia on relationship • Impact of dyspareunia on sexual activity • Effects of dyspareunia on sexual response • Impact of dyspareunia on sexual desire • Overall sexual satisfaction • Communication between the partners Participants Nine men aged between 24 and 42 years participated in the study and engaged in in-depth, semi-structured interviews, facilitated by the primary researcher, an experienced social worker and psychosexual therapist. Participants were in relationships ranging from 1 to 20 years. They were English speaking and lived in NSW, Victoria and the ACT. Their occupations were administration, trade-related, health care, IT and tertiary studies. All participants said they had discussed their involvement in the study with their female partners, four of the women having suggested the study to their male partner. The primary purpose of the interviews was to understand how males adjusted to their female partner’s dyspareunia caused by endometriosis. Sampling A purposive sampling approach was used to recruit individuals who could provide data specific to their life setting and the research question. 47 Five criteria were adopted to identify male partner participants: 1. Participants were in a committed relationship of 1 year or longer, 2. Participants were aged 18 years or over, 3. The female partner had a confirmed diagnosis of endometriosis, 4. Reported dyspareunia was present in the relationship and 5. Participants lived in Australia. Data analysis Thematic analysis was used to analyse the data in this study. Thematic analysis identifies, analyses and reports patterns or themes within and across participants’ data. 48 Braun and Clarke argue it is a flexible approach that can provide rich, detailed and complex accounts of data. Questions about the sexual wellbeing of men whose partners experience dyspareunia in a context of endometriosis, were likely to generate complex, hidden and socially stigmatised emotions, well suited to thematic analysis. Ethical clearance was provided by the University of Sydney Human Research Ethics Committee.

The interviews with men highlighted that dyspareunia against a background of endometriosis is a challenge to a couple’s sex life and their relationship. When the sexual landscape shifts, participants were uncertain about how to react and struggled to locate helpful resources. When intercourse frequency reduced and female partners stopped sexually instigating, men reported confusion. They responded by experimenting with modifying intercourse, embracing non-coitus and innovating as their partner’s symptoms worsen and/or change, which resulted in positives for some. but not for others. The reduction in overall sexual activity contained sexual, emotional and relational challenges. It interfered with how the couples communicated their needs, what support they used and their beliefs in what it meant for their relationship. Subtle undesirable changes occurred in some men’s sexual functioning. The shifting sexual landscape The initial response to women’s pain during intercourse was reduced sexual frequency and limiting sexual activity, including sexual initiating by women and men. However, interviewees found few resources to help them understand endometriosis and its effects on women’s wellbeing. These changes in a woman’s sexual behaviour sometimes caused her male partner to think she was no longer sexually attracted to him and/or that she had lost sexual interest, leading to emotional uncertainty and confusion. Brendon said: ‘[It] messes with your head a little bit because you start questioning yourself and she assures me that it’s not me’. Faced with uncertainty and lack of clarity, Brendon feared his partner no longer found him sexually attractive. When his partner’s pain did not improve and she failed to respond positively to his sexual advances, Brendon thought, ‘is it something that I’ve done . . . am I not as attractive to her as I used to be?’ His partner’s reduced sexual interest and lack of sexual instigation resulted in confusion about his place in their relationship. The combination of limited communication and his own lack of knowledge about endometriosis led Brendon to focus on his own insecurities and caused relationship discord. While understandable, this development caused further stress on the relationship at a time when his partner was already challenged: not what he wanted and not what his partner needed. The uncertainty also led to men reducing sexual instigation due to their partner’s experience of pain. Michael feared intercourse would hurt his partner, so stopped initiating and responding to her bids for sexual activity. When she initiated intercourse, he would ‘shut her down’, causing her to feel rejected and believe he was no longer attracted to her. He sensed her watching him ‘like a hawk’ to see if he would instigate. This had a flow-on effect of making him feel under pressure from her. He said, ‘ . . . it’s almost, you know, a second layer of stress now well, yeah, because I know that she’s so focussed and concerned’. And when they did engage in intercourse Michael was so distracted by his worry, he did not enjoy it and erections could be less reliable. Intercourse with his partner became ‘no go’ territory for Michael as he attempted to avoid his anxiety about causing her physical pain, as well as his assumptions about her rejection, which caused him even more stress. This relational confusion was reported by other participants. Mark felt emotionally disconnected from his partner as she stopped wanting intercourse with ever-increasing pain: ‘it could be easy to fall into . . . yeah into feeling of, of disconnect umm, because there is less sex in the relationship’. Mark thought less frequency of sexual activity threatened their relationship connection. These men reacted differently to their partner’s reduced sexual contact and instigation changes. Brendon’s self-doubt fuelled relationship stress and communication breakdown, Michael’s fear of hurting his partner during intercourse and being unable to talk it through with her, created an impasse, but Mark’s sense of being disconnected from his partner abated when he found a more constructive perspective. Becoming stalled Other participants struggled with a sense of being stuck, or at least stalled, in their bid to build sexual intimacy. George said: ‘I was scared of hurting my wife and she was scared . . . we just literally, we backed away from each other’. George and his partner slept in separate bedrooms, and he recalled two brief forays into intercourse. They involved his partner trying to numb the pain by drinking alcohol. George said his partner would be so inebriated, ‘she could get through it, it wouldn’t be, but it wouldn’t be pleasurable for her in any way, shape or form’. George and his partner’s inability to further explore the sexual possibilities led to isolation within the marriage. Michael and his partner found the challenges of painful intercourse tested their marriage. Similarly to George, Michael’s partner did not develop dyspareunia until several years into their relationship. His reaction to his partner’s pain was to avoid intercourse, not initiate any form of sexual activity or engage with his partner’s initiation, and not talk about their sexual intimacy. This brought stress and discord into the relationship. Ironically, Michael said he would, ‘rather we just mucked around in other ways rather than, than actually yeah, having intercourse because of the, you don’t know what’s going to happen’. Conversations about things sexual can be difficult and Michael’s situation well illustrates this difficulty. Michael’s statement about ‘mucking around’ shows how close he was to an approach that may have opened up his and his partner’s sex life and relationship, but at that stage he was unable to voice his thoughts to his partner. George’s and Michael’s accounts reveal how stuck they were navigating their way through the multiple challenges of dyspareunia and their inability to talk about possibilities. Sexual experimentation Men and their partners who were able to experiment tried modifying intercourse and using non-coital approaches to sexual intimacy. Modifying intercourse consisted of changing positions and/or slowing the rate of movement during intercourse. Modifying intercourse Some couples managed to find ways of engaging in intercourse that resulted in minimal or no pain for the woman, were not distracting for the male partner and allowed both to experience pleasure. Mark and his partner experimented: ‘I think best is probably just you know missionary . . . me on top . . . ’ and ‘if we go about it in a very delicate way . . . she will also get you know, pleasure’. Mark’s experience of a gentler intercourse had led to a surprising and pleasing insight about his own sexual response, ‘it’s good to . . . slow me down you know, and, and yeah, force me to be more . . . just to be more mindful and, and delicate [laughs]’. For those female partners who choose to continue with a modified intercourse, physically changing positions is part of the solution. Tom and his partner found a way to have intercourse where they prop her hips with pillows, take it very slowly so she has ‘very minimal pain where she’s enjoying it again’. Post orgasm, Tom’s partner is in pain and, ‘I sorta run and get the hot water bottle ready’, ‘but she says that it’s always worth it . . . she keeps saying at least . . . she can still use her vagina for good, sometimes [laughs]’. Tom realised the aftercare he engages in has unforeseen benefits, in that the couple’s sexual pleasure is ‘ . . . much longer now’. Changes were needed to reduce pain, and this couple valued their modified intercourse as it was pleasurable for both despite the cost of pain. In Tom and his partner’s situation, it seems that working through the problems thrown up by endometriosis symptoms improved their emotional connection, ‘ . . . it’s become more of a connection now, than before. We both realise that it could have been far worse if we hadn’t worked through the problems that we, that we have’. After his partner’s surgery, Tom described how her intercourse pain at first improved, and later returned. This caused the couple to look for different ways of being intimate other than intercourse: ‘We . . . sort of went through the stage of realising that this is gonna be something we have to deal with and so now we need to make a plan to make sure that we can still have a functioning relationship and life around the problem . . . and you know I guess we sort of have been connecting more on the couch, you know . . . cuddling and kissing and that sort of thing . . . without it actually being a precursor to any intercourse or things like that, so it’s actually been . . . quite nice . . . that aspect of it has probably yeah increased’. When endometriosis symptoms worsen as the condition develops as in Tom and his partner’s situation, couples need to continue to innovate. To reduce pain in his partner, William had to hold his body in a way that he found was not intimate: ‘working and concentrating so hard on what needs to be done to achieve pain free intercourse, that sets up a barrier . . . my psychological arousal is compromised’. While his focus on ensuring his partner was free from pain did not compromise William’s erections, it did adversely affect his psychological arousal and sense of satisfaction with the sexual act. Modification of sexual play was adopted by some participants, yet not without impact. Some interviewees reported struggling to maintain their erotic focus during modified intercourse. Tom would ask, mid-intercourse, ‘are you ok, and we both pretty quickly realised that you know that just kills everything’. William’s worry and distraction during modified intercourse impeded his sexual response. Embracing non-coitus Other interviewees managed to better negotiate the changing sexual landscape by experimenting with non-coitus. The willingness to experiment could lead to new ways for couples to be sexually content together, but experimentation was not necessarily easy, nor did it spell success. Some who embraced non-coitus were able to find sexual pleasure. Simon and John described how they and their partners had abandoned sexual intercourse for non-coital sexual activities that do not include penis-in-vagina intercourse. Simon’s partner experienced dyspareunia from the beginning of their relationship. Simon recalls, ‘one of the things was that I proposed . . . to take sex [intercourse] off the table as a way of strengthening . . . our bond . . . and so we got really good over the next eight or so years at non-intercourse sex’. An unexpected advantage of this approach was that Simon’s partner was able to have pain-free orgasm via non-coital sexual interaction as opposed to the ‘confusing’ experience of painful orgasm during dyspareunia ‘because it was both fun and not fun’. Simon explained how practising non-coitus sexual activity has brought both partners ‘a diverse range of skills, both sexually and non-sexually . . . because at times you go ok that doesn’t work, we’re going to try whatever we’re able’. John and his partner’s practice of giving and receiving pleasure was similar to Simon and his partner’s experience. John said, ‘ . . . like I feel like satisfied . . . because it’s like fun but umm, and it makes her feel good or me feel good’. John goes on to report ‘my sexual satisfaction doesn’t come from intercourse . . . a lot of the other stuff we do I enjoy’. Avoiding pain and enhancing his partner’s sexual pleasure were uppermost in John’s mind as his arousal strongly relates to hers. He said when he and his partner are engaged in intercourse that is painful ‘she doesn’t enjoy it. I can tell. She doesn’t look comfortable and I’m not comfortable with that. Like, I mean like half, I guess for me half the bit for me is like the emotional part I guess, and that’s not there, so it feels really detached and not there’. John recognises his partner’s lack of pleasure, interrupted emotional connection and erotic focus. In relation to his own arousal in the presence of his partner’s pain, John adds, ‘I wouldn’t even get close . . . I don’t really wanna climax, like I mean I’m too preoccupied being worried’. When his partner is without pain and enjoying whatever sexual activity they are involved in, John says, ‘I enjoy it a lot when she enjoys it’. Engagement of non-penis-in-vagina sex provided some couples with the pleasure and intimacy a penis-in-vagina sex life promises. The diverse range of skills Simon and his partner have developed assisted them on their sexual journey, and John’s adaptive responses to his partner’s pain brought pleasure to the relationship. While non-coitus delivered a satisfying sex life for some men, others found non-coital approaches did not suit them. Challenges of non-coitus Despite the advantages of non-coital sexual intimacy, some couples who experimented had mixed feelings, or found it wanting. The coital imperative values penis-in-vagina intercourse as the normal, proper and only way of being sexual. Non-coitus could be seen as not ‘real’ sex by some men, and, according to some participants, it was also seen an inferior sexual activity for some female partners. Matthew thought non-coital sexual activities were not as mutually pleasurable as intercourse because the activities felt one-sided, adding, when one of them had orgasmed there was often ‘not enough energy left for the other person’. On the other hand, he was able to offer his partner an orgasm via oral sex and this was rewarding because ‘ . . . not being able to have penetration and then me not being able to satisfy her in any way, I think that would, would be a much more challenging relationship’. Although he still preferred intercourse to non-coital sexual activity, Matthew’s ability to bring his partner to orgasm via oral sex played an important intimacy-building role for him. Brendon’s experience with non-coital sex was also mixed. He explained how his partner would give him oral sex but not be interested in Brendon returning the favour. He added since seeing a sex therapist and taking intercourse off the table, it has opened the opportunity to experiment with other things, ‘getting to know each other’s bodies more and things like that to make it a bit more, I guess a sensual experience’. Simon’s sexual response was adversely affected, and he suspected he was distracted by the fear of hurting his partner. They had successfully engaged in non-coitus for 8 years, then his partner was able to return to intercourse, but Simon found he was slow to ejaculate. He thought the delay might be ‘linked to training oneself to not . . . be too firm for a long period of time’. He added, ‘Now I’m more permitted to be more firm but you’re also cautious . . . is there still a pain that I might accidentally . . . ?’ The worry was potentially undermining Simon’s sexual response. For Michael, his belief in the coital imperative was a barrier to experimenting with non-coitus. Michael’s question summed this up: ‘ . . . you know you can’t help but think it’s like oh god, if it wasn’t like this you know, what would it be like? What is normal, you know?’ In Michael’s mind, normal sex was not equated with non-coitus. The role of masturbation All men in this study said they masturbated. Some were able to discuss their masturbation with their partner, and others were not. Masturbation was used by these men as a pressure valve. Matthew would masturbate ‘when I do get frustrated and I can’t rationalise the situation’, or when his partner was ‘having one of those extended menstrual cycles’. Discussing masturbation allowed John to reassure his partner that he was not relying on her to satisfy all of his sexual needs. When she does worry, they are not having enough sex, John says, ‘you know I do have like a hand, and stuff like that . . . and she’s ok with that’. Masturbation was sometimes undertaken alone and secretively without the female partner knowing, and other times undertaken in full knowledge. Matthew and Mark said sometimes their partner would participate as a relational sexual act, but others found it problematic. Brendon, who initially thought his partner was no longer attracted to him, saw masturbation, especially using internet pornography, as cheating. George, whose partner used alcohol to numb the pain, thought he used internet pornography too much. For some interviewees, masturbation became a substitute for sexual connection with their partners. Others used it as a sexual adjunct or valve for pent up sexual energy, and masturbation was framed within the relationship as self-care and reducing pressure on the female partner. Summary: The lows and highs of the challenges Men feared hurting their female partner via intercourse while also feared raising their sexual needs. Some avoided discussion which led to relationship strain. When women reduced sexual frequency and sexual instigation it caused some men to doubt their own sexual attractiveness. Men also grieved a loss of emotional connection from their partner, as sexuality drained from the relationship. Subtle sexual functioning changes were experienced by male participants. Disturbances in erotic focus led to unreliable erections, inability and/or slow to ejaculate and reduced psychological satisfaction. However, courage was shown by male partners in this study as they experimented with modified intercourse and non-coital sex, guided generally with little professional support. This worked well for some and not for others. Some men reported feeling blocked in their sexual relating, but others were able to build relationship depth and resilience. Engaging with a broad repertoire of expressing sexual intimacy can be an important tool if endometriosis symptoms continue to grow and further adversely affect the woman’s sexual response.

This study was an exploratory study. Further research with larger numbers could extend the findings. Using the findings of this study to inform a survey-based study would add strength to these men’s experiences, and the experience of male partners in general. Seeking input from male partners of women with endometriosis and dyspareunia, whose relationship had ended would also shine light onto the impacts. Research into non-heterosexual individuals and couples, for example lesbian and transpeople, was not the focus of this study, but could provide valuable intelligence. More information about how a woman maintains her sexual interest and identity in a context of endometriosis, pain and dyspareunia, is also an important element, again, beyond the scope of this study. This study, as with previous studies, did not glean much information about positional modifications to intercourse, which is an important consideration for couples and deserves a focussed investigation. The strengths of this study lie in the nuance of the participants’ experiences, positive and negative. To know that some men feel confused when their female partner reduces sexual contact for no apparent reason, could be a normalising experience for readers. To know that some men’s modification of their usual sexual routine can strengthen and deepen their sexual connection, could inspire men to work with their partner’s pain and not fight it. To read that men can challenge the ascendancy of penis in vagina sex and achieve sexual and relationship satisfaction is a good news message for men and women. To read how some men’s use of ‘after care’ extended the sexual experience and improved their relationship, could also inspire change for the good.

When considering the adverse effects of endometriosis on women and people with uteruses, it is easy to ignore the sexual impacts on the male partner. However, research tells us that the male partner in the heterosexual context can be a woman’s biggest support, and that relationship health is closely connected to sexual wellbeing. The nine men revealed a range of impacts, some of which were adaptive and others maladaptive. They described innovative ways of adjusting to the dyspareunia, showed how vulnerable their sexual functioning could be, and confirmed some previous findings. The deep investigation provides readers with richly detailed accounts of men’s experiences, their experiments, their successes and their ongoing difficulties. It also challenges health professionals to find ways of better supporting couples in this context. The topic is difficult to talk about, engenders strong reactions, and plays a significant role in the intimate life of a couple who happen to be living with endometriosis and dyspareunia. In understanding men and their experiences of living with a partner with endometriosis, we can also better support those women living with endometriosis. We can shut men out or we can enable them to be part of the solution.