Partners matter: The psychosocial well-being of couples when dealing with endometriosis

A quantitative cross-sectional multi-centre study was conducted at the University Hospital Heidelberg (UKHD), Germany and the Medical University of Innsbruck (MUI), Austria. The study was approved by the Ethics Committee of the Heidelberg Medical Faculty (S-301/2016) and Medical University of Innsbruck (AN-2017-0028 370/4.7). All women undergoing diagnostic laparoscopy to explore the reason for dysmenorrhea or infertility during their treatment at UKHD and MUI and their partners were invited to participate in the study.

At UKHD data was collected at the Department of Gynaecological Endocrinology and Fertility Disorders from September 2016 to August 2018. All patients and their partners were informed about the study during a pre-operation consultation before the laparoscopy. Patients also had the opportunity to take home the documents for their (not accompanying) partners or to participate alone. Participants who agreed to take part were asked to fill in the questionnaires in a timely manner after the laparoscopy. All Participants were informed about their right to withdraw from participation consent at any time without giving any reasons and without any consequences. At MUI the survey took place at the Department of Gynaecological Endocrinology and Reproductive Medicine from June 2017 to July 2018. Patients and their partners were recruited in the same manner as at the UKHD.

In total, about 800 questionnaires were handed out. N = 322 individuals took part in the study. For answering the main research objective in this paper, we included only women with clinically proven endometriosis whose partners were also participating in the study. Thus, our sample consisted of n = 104 couples.

Mean age of women was 33.0 years (SD 5.47), for men 36.2 years (SD 6.42). Of all participants, 59.4% were high school or university graduates. Mean partnership duration was 8.93 years (SD 5.23). Due to the clinical confirmation per laparoscopy, surgical treatment was the most mentioned treatment by women (86.7%), followed by hormonal treatment (41%), naturopathic treatment (15.8%) and other pain therapy (9.6%). Of all participants, 31.4% already had children, 74.0% had a present wish for a child, on average for 3.93 years (SD 3.08), and reported infertility treatment on average for 2.01 years (SD 2.26).

Assuming a medium effect size (ES) of d = 0.30, a total of 79 dyads need to be recruited to have adequate power to detect actor and partner effects at an alpha level of α = 0.05. Statistical analysis was performed using the Statistical Package for Social Sciences (SPSS) for Windows, Version 25 (IBM Corp. 2017). Data were analysed with a couple as the unit of analysis. The clinical and socio-demographic variables were described through descriptive statistics. Comparisons of means between men and women were run by paired t-tests. For dyadic data analysis, the Actor Partner Interdependence Model [APIM; 34] was used. The APIM takes couples as the unit of analysis and stipulates that one person’s behaviour not only affects him-/herself (actor effect) but also his/her partner (partner effect) [35].

In all our APIM analyses, impact of endometriosis-related pain was the dependent variable and depression, anxiety, stress, sexual satisfaction, partnership and social support were each individual independent variables, calculated separately for women and men. To calculate the APIM, we used SPSS Syntax Mixed and the web-based program APIM_MM (Actor Partner Interdependence Model with Multilevel Modelling) for distinguishable dyads by David A. Kenny (http://​davidakenny.​net/​DyadR/​DyadRweb.​htm). This program also calculates ES to estimate the clinical relevance of the APIM effects. p < 0.05 was considered statistically significant. The assumption of normal distribution was violated for the variables ‘impact of endometriosis-related pain’, ‘partnership’, ‘sexual satisfaction’, ‘depression’, and ‘anxiety’. We performed square root transformation to achieve a normal distribution for these variables. Subsequently all predictors were centred [36].

All APIM couple analyses (see Table 2) were controlled for partner’ age and wish for a child, where necessary, APIM couple analysis were additional controlled for sex frequency and social support.

The adverse relationship between endometriosis and psychosocial well-being in women has been shown in various studies and reviews [16, 27, 38‐40]. In a cross-sectional study including over 10,000 women an increased risk of developing major depression and anxiety disorders among women with endometriosis was present [41]. The highly significant results for depression, anxiety and stress in our study demonstrate the close relationship with the impact of endometriosis-related pain in women and demand empathic consultations and awareness from health professionals for the psychosocial risks of endometriosis. For male partners of women with endometriosis, qualitative studies point out that endometriosis can pose a challenge to their own quality of life [8, 9]. Those findings are in line with our study results, which indicate that also men are affected by the impact of endometriosis on their (social) lives. Mittinty et al. [21] analysed dyadic coping behaviour in patients with chronic pain and their spouses and found reciprocal relationships with depression, anxiety and stress. Thus, there seems to be a high interconnectedness within couples with chronic diseases in regard to psychological distress. The reciprocal effects of endometriosis on couples’ lives regarding psychosocial distress shown in our study is an additional example of the so called “We-disease” [42], defined as shared appraisal and shared efforts to cope with a disease in couples [43], which needs to be addressed by psychosocial care in clinics.

Sexuality is a relevant issue when dealing with endometriosis. We found a negative relationship between sexual satisfaction in women’s and men’s reported IEP on their daily lives, so less sexual satisfaction in women was associated with a higher impact of endometriosis pain in men. Previous research in women with endometriosis highlighted the adverse effects of endometriosis on sexual functioning and sexual quality of life [10, 11, 13, 14], especially the negative implications of dyspareunia on partner intimacy and relational distress [44]. Indeed, significant partnership problems caused by endometriosis-related symptoms and even break-ups or divorces have been reported [5, 45]. Thus, there seems to be a particular need to include the partner’s perspective when coping with endometriosis [46]. Compared with the two quantitative studies regarding male sexuality and endometriosis [15, 16], our study supports the results of sexual implications for male partners of endometriosis patients [15]. However, we found no direct actor effect in men concerning their sexual satisfaction and the impact of endometriosis on their lives, which may be due to a male social desirability in reporting sexual satisfaction. To our knowledge, these are the only quantitative studies regarding this topic, thus more research is needed, especially with focus on couple analysis.

In our study, we found no direct effects of partnership satisfaction on the impact of endometriosis. This may be due to the nearly equally very high partnership satisfaction in our sample, with women and men rating their satisfaction on average with 8.91 (SD 1.07) respective 9.07 (SD 1.26) on a scale from 0 to 10. Nevertheless, focusing on a good partnership is important, since relationship satisfaction has positive effects on the management of different kinds of mental and physical diseases with improved recovery [47]. On the other hand, Pluchino et al. [46] point out that relationship problems in endometriosis couples were attributed to decreased socialization due to the chronic disease and the incapacity of partners to tolerate the endometriosis symptoms. Considering the vicious and the supportive circle, it is important to take the couple and their relationship into account, when diagnosing, treating and supporting women with endometriosis.

Social interactions have a profound impact on our ability to cope with emotional and physical distress [48]. The significant relationship in our study between lack of understanding and higher IEP was the most momentous one. Particularly since the regular social support items from the SHP—regarding the availability of relatives, friends, acquaintances and work colleagues being there if necessary—had no impact on IEP, neither as a predictor nor as a covariate variable. Thus, participants seem to differentiate between the feeling of having good social support vs. the feeling others could understand what having endometriosis meant for their lives or the lives of their female partners.

Qualitative research has highlighted the strain of endometriosis symptoms on social relationships and consequently social support [24, 49]. For male partners, Culley et al. [8] indicated the lack of support available to men and the absence of professional or societal recognition of the impact on male partners of endometriosis patients. Whitney [50] reported that women wanted others to understand and to share information about the symptoms of endometriosis. The quality of one’s social relationships is reliably related to positive and negative physical health outcomes [51, 52]. Therefore, a social surrounding that is less understanding can have adverse effects on health—on an individual and reciprocal level in endometriosis patients and their partners. Thus, support groups for endometriosis are highly recommended. Given that only 20% of the population seem to know about endometriosis [53] and the effects endometriosis can have on a woman’s life and partnership, our data mirror what patients and their partner are experiencing. There are different reasons why endometriosis—despite its prevalence—is rarely known in society. One important reason is the various, complex appearance of endometriosis, from asymptomatic to monthly dysmenorrhea to heavy pain and infertility. Another reason is that dysmenorrhea as a symptom of endometriosis is neglected in society as “menstrual cramps are normal” [28, 54]. Awareness for this “chameleon of gynaecology” [55] is highly needed to reduce time from symptom onset to diagnosis and to increase understanding for endometriosis in the public—for the concerned women and their partners.

Our study has several strengths: There are only few studies investigating the attitudes and experiences of couples with women suffering from endometriosis respectively the attitudes and experiences of the male partner. Thus, our study results extend the existing literature in many psychosocial aspects. Furthermore, our study examines a broad clinical picture, displaying a high external validity. Using dyadic data analysis promotes a meaningful examination of the association between stress, anxiety, depression, sexual satisfaction and IEP. In addition, the number of participating men is high, we had n = 104 couples in our sample and only 24 individual female participants (not reported in this paper); thus, in most cases both partners participated. In addition, endometriosis was clinically confirmed by laparoscopy. Furthermore, our study was conducted at two study locations: Germany and Austria, which enriches the external validity of the results.

The study reveals the following limitations. First, the cross-sectional study design limits conclusions on causal relationships or possible changes over time in the interaction between couples. Second, for the most part, information was achieved via self-report measures. Thus, the data may suffer from reporting bias. Furthermore, the adjustment to the specific situation in endometriosis, e.g. the adapted male version of the EHP-5 as investigator-derived questions, likely influenced the validity of the questionnaires. Third, generalization of findings is limited to couples who attended treatment in a university hospital setting, as often the case in clinical studies with endometriosis patients [e.g. 5, 56]; therefore, allowing the risk of selection bias. Moreover, due to our recruiting strategy, there is a huge overlap of couples with endometriosis and wish for a child. However, our major outcome are the interrelationships of endometriosis-related pain, which are detached from the wish for a child.

Fourth, a study bias might exist since couples were addressed at the same time-point. Contrary to instructions, couples might have answered their questionnaires together or one person might have urged the other person to participate. Fifth, participants in this sample had an above-average high educational background and show a limited age range.