Comparison of male and female perspective in couples involved in sexual relationships and facing endometriosis

Conceptualization: BL, FaH, ASKS, PI, MR, MMW, FeH, SvO, ME. Data curation: BL, FaH, ASKS, Formal analysis: BL, FaH. Investigation: BL, FaH, ASKS, PI, MR, MMW, FeH, SvO, ME. Methodology: BL, FaH, ASKS, MR. Project administration: BL. Resources: BL, MR, MW, FeH, SvO, ME. Supervision: BL. Validation: BL, FaH. Visualization: BL, FaH, ASKS. Writing–original draft: BL, FaH. Writing–review and editing: BL, FaH, ASKS, PI, MR, MMW, FeH, SvO, ME.

None declared. Conflicts of interest: None declared.

The objective of this study is to compare each partner’s perception of sexuality within heterosexual couples confronting endometriosis. The study is designed as a multicenter cohort study. Data were collected within a larger matched case-control study conducted in Switzerland (CH), Germany (D) and Austria (A). The original study investigated women with endometriosis and control probands, including their partners if they were available. To ensure the quality of reporting, the article was structured per the STROBE criteria. 20 The District Ethical Commission of Zurich, St. Gallen and Berlin examined and approved the study design. Each participant was informed about the confidential and anonymous treatment of personal data and received a consent form. Female participants received an additional form to allow access to their patient data. Only probands with signed consent forms were included in the study. Women with endometriosis and controls were recruited in the University Hospital of Zurich (CH), Triemly Hospital (CH), District hospital of St. Gallen (CH), District Hospital of Baden (CH), District Hospital of Winterthur (CH), District Hospital of Schaffhausen (CH), Charité Berlin (D), University Hospital of Aachen (CH), Vivantes Clinics (D) and the University Hospital of Graz (A) as well as in private practices. A smaller number (n = 49) of patients with endometriosis in self-help groups in Germany were approached by the study team through the German Union of Endometriosis ( www.endometriose-vereinigung.de ). Study participants were required to be at least 18 years old; provide a histologically confirmed diagnosis of endometriosis from patient records; and live in Switzerland, Germany of Austria. Exclusion criteria were current pregnancy or mental, linguistic, or psychiatric conditions that might impair understanding the survey. For the present analysis, only couples where the woman was diagnosed with endometriosis were included. All women were approached directly by the study team. This recruitment process resulted in 302 available data sets from heterosexual couples ( Figure 1) . Recruitment of study participants. Patients with endometriosis received a questionnaire with 452 questions on sociodemographics, endometriosis, concomitant diseases, gynecologic issues, and different quality-of-life aspects that included intimate relationships as well as sexuality. Answers to 45 of the 452 questions served as the basis for the present analysis. To maximize the response rate, patients and their partners received a reminder to complete the survey after 1 and 3 months. The questionnaire regarding sexuality and intimate relationships relied on the Brief Index of Sexual Functioning (BISF; Q1, Q10) and Sexual History Form (SHF; Q4, Q5, Q9), as well as on questions created by experienced endometriosis specialists (Q2, Q3, Q6-Q9, Q11-Q14; Table 3 ). The BISF was developed to investigate sexual functioning and satisfaction in women, 21 while the SHF is a tool to evaluate female and male sexual functioning. 22 The additional questions were designed to address the sexual issues of patients with endometriosis that were not covered by the BISF or the SHF. Questions were designed to evaluate the perception of sexuality in both partners, as represented by satisfaction with sexual life, relative frequencies of sexual activity, and initiation of sexual contact, as well as effects of endometriosis and pain on the sexual relationship. Response options were designed as single-choice Likert scales; in most cases, the questions asked for absolute or relative frequencies as well as for the actual value of the variable. SPSS for Windows (version 27; IBM) was used for statistical calculations. For descriptive data, t -tests were applied to questions evaluating continuous data, while the Pearson chi-square test was used for ordinal and nominal data. The Wilcoxon test served to detect different tendencies regarding the perception of sexuality experienced within each couple. The ordinal answer options were labeled numerically; the difference between a couple’s responses was established by subtracting female partner (FP) values from MP values. Ties mean a difference of zero, while a positive difference indicates MP > FP and a negative difference MP < FP. Each test was performed 2-tailed. For the main analysis, the Bonferroni correction was used to investigate an appropriate level of significance for multiple testing. A P value <.007 and a Z value ±2.47 were determined to be significant. The effect size r was calculated according to Cohen. 23

Socioeconomic data for both partner groups are shown in Table 1 . FPs and MPs showed similar levels of education and similar distributions in nationality. FPs worked full-time less frequently and part-time more frequently than MPs. FPs showed significantly lower individual incomes than MPs. A majority of the 302 couples (59.3%) were in a relationship for 7 to 15 years (36.1%) or >15 years (23.2%), 6.0% for <1 year, 8.6% for 1 to 3 years, and 25.4% for 3 to 7 years. Sociodemographic information on both partners. Pearson chi-square; significance at .050. Table 2 presents the medical and psychological background information of FPs. Altogether, 104 women (39.25%) did not experience decent sexual counseling. A further 56 women (21.13%) were satisfied with sexual counseling to a limited degree, while 22 (12.45%) were ambivalent regarding the quality of sexual counseling. A minority of FPs were completely (n = 34, 12.83%) and highly (n = 38, 14.34%) satisfied with sexual counseling. Medical, psychological, and endometriosis-specific health aspects of female partners. Abbreviation: rASRM, revised American Society for Reproductive Medicine. An overall 133 women (46.18%) reported sometimes experiencing pain preventing sexual pleasure, and 57 (19.79%) reported this to be the usual case. A third of the respondents (n = 96, 33.33%) rarely felt pain preventing sexual pleasure, and 2 (0.69%) indicated not ever experiencing pain. Table 3 provides a comparison of perspectives on partnership sexuality within the couple. In 135 (46.3%) couples, both partners chose the same category of sexual relationship satisfaction. There was a significant difference between partners regarding satisfaction with the sexual relationship, with a medium effect size according to Cohen ( P = .002, Z  = −3.046, r  = 0.178). MPs reported higher satisfaction than FPs in 99 couples (33.9%), while in 19.9% of couples, MPs cited lower satisfaction (n = 58). Most couples (n = 163, 61.7%) evaluated the relative frequency of sexual activities with their partners to be in the same category ( P < .001, Z  = −4.717, r  = 0.290). Nevertheless, there was a significant difference observed between MPs and FPs on a medium scale. Comparison of perspectives within the dyad. Abbreviations: FP, female partner; MP, male partner. Pearson chi-square; significance at .007. Based on negative ranks. Based on positive ranks. In 26.9% (n = 71) of couples, the FP chose at least 1 category above the MP’s choice, while in 11.4% (n = 30) of relationships, the FP chose a lower category than the MP. Asked about the frequency of the FP engaging in sexual contacts to not endanger the relationship, despite lethargy or discomfort, in 83 (39.9%) couples, FPs and MPs gave the same answer. In another 83 (39.9%) couples, FPs reported a higher frequency of such contacts than their MPs did, while in 20.2% (n = 42), FPs indicated a lower frequency of these situations than MPs. A significant level for a divergent tendency across the 208 couples was reached and indicated a medium effect ( P = .001, Z  = −3.207, r  = 0.222). Regarding the discomfort of the FP in sexual activities affecting satisfaction with the sexual life, 27.5% (n = 58) couples chose the same answer. In 107 (50.7%) couples, the FP indicated a lower impact on their sexual satisfaction than the MP, whereas 46 (21.8%) couples had a higher impact reported by the FP than the MP. There was a strong effect of partners’ divergent attitudes regarding this question ( P < .001, Z  = −5.352, r  = 0.368). There was no significant difference within the partnerships for questions evaluating the impact of sexual limitations due to endometriosis on satisfaction with the partnership (MP = FP, n = 67 [29.1%]; MP  FP, n = 82 [35.7%]; P = .695, Z  = −0.392) and satisfaction with the variety in sexual activities (MP = FP, n = 130 [47.1%]; MP  FP, n = 61 [22.1%]; P = .237, Z  = −1.183). In addition, both partners seemed to share the view on which partner usually initiated sexual activities (MP = FP, n = 183 [64.9%]; MP  FP, n = 61 [21.6%]; P  = .107, Z  = −1.610). Figure 2 shows the estimates of FPs and MPs about their counterparts’ satisfaction within the sexual relationship (Q14) as compared with their self-reported satisfaction with the sexual relationship (Q1) of the partner. While 128 (44.1%) overestimated their MPs’ sexual satisfaction at least by 1 category, in 116 couples (40%) the MPs evaluated their FPs’ sexual satisfaction within the same category reported by the MPs; 46 (15.9%) FPs underestimated their MPs’ self-reported satisfaction ( P < .001, Z  = −6008, r  = 0.351). Altogether, 149 (51.20%) MPs evaluated their FPs’ sexual satisfaction within the same category as FPs did themselves, while 101 (34.70%) overestimated their FPs’ sexual satisfaction at least by 1 category and 41 (14.09%) MPs underestimated their FPs’ self-reported satisfaction ( P < .001, Z  = −5147, r  = 0.302). Comparison of the partner's assessment with self-declared satisfaction with the sexual relationship. Table 4 presents results for FP and MP cohorts regarding questions related to partnership sexuality. When sexual desire was rated on a scale from 0 to 10, the score of the FP was 1.86 points lower than the MP’s (mean ± SD, 4.36 ± 2.617 vs 6.22 ± 2.201; median, 4 vs 7; P  < .001, t -test). Cohort-based analysis of perspectives on couple sexuality. Pearson chi-square; significance at .050. t -test, 2-tailed; significance at .050.

Couples dealing with endometriosis seem to have different perspectives on certain aspects of their shared sexuality. Divergent points of view were reported on the satisfaction with the frequency of sexual contacts, general sexual satisfaction within the partnership, and the effect of discomfort of the FP on personal sexual satisfaction. Both partners showed tendencies to overestimate their partners’ sexual satisfaction, and MPs underestimated the frequency of their correspondent partners engaging in sexual contacts despite discomfort, to not jeopardize the relationship. These points underline the importance of sexual counseling that includes both partners when facing endometriosis. Men and women facing endometriosis overestimate their partners’ sexual satisfaction. Men underestimate the frequency of their partners engaging in sexual contacts despite discomfort. Sexual counseling addressing both partners should be part of medical support in endometriosis.

Most MPs and FPs were satisfied with the sexual relationship with their partners, but MPs reported significantly more often higher sexual satisfaction than their FPs. MPs tended to overestimate their FPs’ sexual satisfaction, while FPs had a more accurate perception of their MPs’ satisfaction yet still tended to estimate their partners’ satisfaction higher than in reality. A majority in both groups wished for greater frequency of sexual contacts, even though MPs indicated a stronger desire for more sexual activity than their FPs. In 40% of the couples, the MP was not aware that the FP realized sexual contacts despite listlessness or discomfort, and in 51% of cases, MPs reported a higher impact than FPs on sexual satisfaction through endometriosis-related pain. Although women with endometriosis often fear being inadequate sexual partners, 18 in our study sexual satisfaction was high in most couples and even higher in MPs than in FPs. On one hand, this evidence might help women reduce fear of insufficiency and help them have more confidence in the quality of their sexual relationships. In line with these findings, women also longed for a higher frequency of sexual encounters, even though endometriosis-related pain and specifically dyspareunia were indeed a problem interfering with fulfilling sexual contacts. On the other, fear of insufficiency likely motivated women (in our study and those of others) to engage in sexual contacts despite endometriosis-related pain. 18 Socioeconomic status eventually influencing women’s roles and communicational skills are known to influence disease symptoms 24 , 25 and sexual behavior 26 ; however, there is currently no information on such associations in the context of endometriosis. Although MPs expressed higher sexual satisfaction, they reported higher levels of impact of pain of their FPs on their sexual satisfaction. Two-thirds of FPs experienced pain during sexual activity on a regular basis. When compared with control couples without endometriosis, men in relationships with women diagnosed with endometriosis showed lower sexual satisfaction and a greater impact of sexual difficulties on partnership happiness. 18 Another reason for the different levels of satisfaction might be fertility issues: more than two-thirds of the participating couples were concerned with reproduction, known to be associated with reduced relationship and sexual satisfaction 27 , 28 as well as a higher prevalence of sexual dysfunction. 29 Since sexual satisfaction has been identified as a predictor for partnership stability in previous research, 26 these results—in combination with the knowledge that in MPs, a lower satisfaction with relationship sexuality seems to be a predictor for a possible breakup 30 , 31 —emphasize the need for the integration of sexual counseling into medical support in cases of endometriosis. In our sample, FPs and, to an even higher degree, MPs tended to overestimate their partners’ sexual satisfaction. Mechanisms leading to this perception may range from sexual communication deficits to social desirability bias. This indicates potential for improvements in communication within the couple, especially as separately conducted qualitative interviews in couples facing endometriosis show a reduction in communication about one’s own needs, to avoid burdening the partner with one’s personal struggles. 16 The mechanism of poorer sexual communication in couples with dyspareunia as compared with controls has shown the lower sexual communication skills of FPs, while their MPs do not present any impairments in communication. 32 Based on findings in women with dyspareunia, educating women with endometriosis in sexual communication might result in better sexual functioning of the FP, even if pain experiences remain the same. 33 It is well known that pain perception is closely related to psychological factors 34 so that psychotherapeutic support might be a valuable resource for improvement. Our results confirm not only a high prevalence of endometriosis-related pain but also a serious impact on sexual pleasure. This is even more relevant, since MPs underestimated the frequency of sexual engagement with their partners despite their discomfort. As having sex with a partner who is perceived as lethargic or in pain will decrease sexual pleasure, open communication on actual well-being, sexual desire, and feelings would allow a reduction in unnecessary burdens on sexuality. Evaluating the motivations of FPs for such contacts—for example, the fear of breakdown of a relationship or the desire for a child—might help develop strategies that allow a satisfying sexual relationship for both partners. Reasons for having sex despite lack of desire or pain in women without documented health issues range from normalizing the experience of dyspareunia and putting their partners’ satisfaction first to considering pain to be insignificant and gender-specific constraints. 35 In addition, the discrepancy in desire detected in this sample might be an explanation, since such discrepancy in healthy couples can lead to the sexual acquiescence of women. 36 Despite discrepancies between MPs and FPs, both reported appreciating a higher frequency of sexual contacts. As such, this motivation might serve as a promising basis to improve not only the quantity but also the quality of partnership sexuality, when problems resulting from endometriosis are addressed with adequate sexual counseling. This study is, to our knowledge, the first one to have collected dyadic information about partnership sexuality in heterosexual couples dealing with endometriosis. There was a high response rate from MPs as compared with other research investigating intimacy. 33 Since patient recruitment also involved patients from gynecologic practices, the risk of selection bias of patients from a tertiary care center with a higher impact on quality of life 37 is considered to be negligible. The focus of this study is on heterosexual couples and provides information on heteronormative relations dealing with endometriosis. The adjustments to the questionnaires to make them endometriosis specific might make the survey more exact for patients but with reduced comparability. Also, the situation of non–German-speaking partners remains unexplored. As the recruitment for MPs happened through FPs, there was no medical or psychological report about MPs’ health status. Despite the high response rate, not all questionnaires were complete, which is most likely due to the intimate content of the study. As the data’s characteristics are quantitative, there might be more unexplored qualitative information about how couples facing endometriosis develop dyadic coping strategies or about unknown implications of endometriosis on the sexual relationship. The study focused on couples in a relationship. Therefore, the impact of endometriosis on the sexual relationship might be underestimated, since dyspareunia as a symptom of endometriosis can be part of why relationships are not initiated or why they come to end. 10 In addition, partners in a more stable relationship are more likely to participate in dyadic research. 38 As all reviewed studies recruited the MP through the FP enrolled in the study and as most of the couples included in the study were in a relationship for >7 years, there might be a bias toward recruiting couples who have sufficient copings strategies to deal with the burden of endometriosis. As a field of future research, this might be an interesting population to scan for coping strategies instead of problems concerning sexuality. Women with a gynecologic condition such as endometriosis do not necessarily report issues with their sexuality, 10 which emphasizes the importance of a wholesome patient history. Not more than 27.2% of FPs reported the experience of decent sexual counseling as positive; in the other 72.9%, either no counseling regarding sexuality took place or the quality of sexual counseling was perceived as insufficient. As such, sexuality should be addressed in a well-prepared standardized manner. A useful approach might be to establish the routine use of a patient-reported tool to evaluate the multidimensional burden of endometriosis. 39 Possible implications on the sexuality of the MP have been evaluated in several studies, 15–18 with 1 study showing contradictory results. 19 Our study is, to our knowledge, the first one to evaluate the perceptive accuracy of partners’ shared sexuality and to identify reference points (discrepancy in desire, sexual contacts despite FP’s discomfort, possible ways to increase frequency of sexual contact) that are worth addressing when counseling a couple dealing with endometriosis. Since the perceived interests and behavior of an intimate partner has a positive influence on the mental well-being of patients with endometriosis, 40 it is important to highlight the importance of the partner’s needs in a relationship. The exploration of dyadic coping on partnership regarding sexuality in patients with endometriosis has been very limited 40 ; nevertheless, a majority of MPs reported changes in sexuality due to endometriosis 18 and expressed the need to have these issues addessed. 16 This underlines the importance of further research on sexual communication in relationships, since it is a predictor for sexual and relationship satisfaction in healthy couples. 41

Endometriosis is a chronic disease characterized by endometric tissue outside the uterine cavity, affecting up to 10% of women in their reproductive years. 1 , 2 Women diagnosed with endometriosis can experience a broad variety of symptoms, such as chronic pelvic pain, infertility, dyspareunia, or fatigue. 3 Beyond the physical impact, these women are more likely to show poorer mental health, symptoms of depression, 4 , 5 reduced quality of life, impaired social functioning, 5 , 6 and lower performance at work. 6 , 7 In particular, pelvic pain related to endometriosis is associated with an impaired quality of life and poorer mental health. 8 While the association among specific endometriosis lesions, other disease symptoms, and dyspareunia is highly debated, 9 patients with dyspareunia have basically reported an impact on the romantic and sexual relationship with their intimate partners. 5 , 10 Women with endometriosis experience lower satisfaction with their sexual relations and experience feelings of sexual aversion more often. 9 , 11 Intimate partners also report a negative impact on partnership sexuality. 12 The male perspective on sexuality within partnerships facing other gynecologic conditions, such as vulvodynia 13 or infertility , 14 has been the subject of research. In the field of endometriosis, information about relational and sexual patterns is often collected exclusively through the female patient, leaving out the male partner’s (MP’s) point of view. Only a few research studies have addressed the impact of endometriosis on the sexual life of a patient’s intimate partner; most of these findings indicate that endometriosis has an effect on the MP’s sex life as well. 12 , 15–18 Just 1 study suggests that men do not face sexual difficulties related to their partners’ endometriosis. 19 However, while women face consequences of endometriosis symptoms directly, the effect on men is indirect and may consequently differ from women’s experiences. Generally, men express a need to discuss their experiences in dealing with endometriosis and wish to receive more support than what is offered by medical staff, including with regard to sexuality. 17 To date, no quantitative research is available comparing women’s and men’s perceptions on their partnership sexuality when dealing with endometriosis; this hampers sexual counseling touching upon endometriosis. This study aims to directly compare perceptions of sex life in heterosexual couples and to identify possible predictors for a shared perspective within a couple. It also evaluates whether men and women adequately assess their partners’ satisfaction with their sexual lives. Key question: Do women and men who are involved in a partnership dealing with endometriosis differ in their opinions about their sexuality as a couple? Subsidiary question: Do women and men as individuals engaged in a heterosexual relationship facing endometriosis rate each other’s sexual satisfaction adequately?