A systematic review on the effects of endometriosis on sexuality and couple's relationship.

The flow diagram is depicted in Figure 1 . A total of 294 articles were identified as potentially relevant. Of these, 197 were excluded by title and/ or by abstract or were duplicates removed and 27 were excluded for being written in a language other than English. The remaining 70 had titles or abstracts reporting information on the association between endometriosis and sexual functioning and were thus retrieved for evaluation. Of these, 6 were narrative review articles, 31 were studies evaluating sexual function after surgical or pharmacological treatment of endometriosis, and 23 either considered dyspareunia as the only sexual outcome or were quantitative studies in which measures did not involve comprehensive questionnaires or did not evaluate couples’ sexual function. The final selection included ten studies. The studies were selected due to the fact that they were studies that focused on the impact of endometriosis on both sexual function and couple’s relationship. Flow diagram of the literature search. Table I summarizes results regarding the characteristics of the selected studies (author, year, country, study, aims, study design, sample, type of endometriosis, sexual functioning measures). Overall, these studies used data from 582 women with endometriosis and 411 partners. Sample sizes varied between 13 ( Butt and Chesla, 2007 ) and 170 ( Ferrero et al., 2005 ) women, and between 13 ( Butt and Chesla, 2007 ) and 236 ( Hammerli et al., 2018 ) men. Two studies involved female controls ( De Graff et al., 2016 ; Hammerli et al., 2018 ), one involved woman with gynaecological conditions other than endometriosis ( Ferrero et al., 2005 ), and one involved male partners of healthy women ( De Graff et al., 2016 ). The type of endometriosis was specified in 3 studies ( Ferrero et al., 2005 ; Fritzer et al., 2013 ; Hammerli et al., 2018 ), two of them considered patients score stage I to IV ( Fritzer et al., 2013 ; Hammerli et al., 2018 ) and one divided the patients in two groups (a group of patients with Deep Infiltrating Endometriosis (DIE) of uterosacral ligaments and another group with endometriosis without lesions of the uterosacral ligaments) ( Ferrero et al., 2005 ). Characteristics of studies included in systematic review of the effects of endometriosis treatment on sexual function and couple’s elationship. Abbreviations: ASRM: American Society for Reproductive Medicine; BISF: Brief Index of Sexual Functioning; DSFI: Sexual Satisfaction Subscale of the Derogatis Sexual Functioning Inventory; FSDS: Female Sexual Distress Scale; FSFI: Female Sexual Function Index; GSSI: Global Sexual Satisfaction Index; NAS: Numeric Analogue Scale; rAFS: revised American Fertility Society; SHF: Sexual History Form; USLE: Deep infiltrating endometriosis of the uterosacral ligament; VAS: visual analogue scale. Of the 10 included studies, five used a qualitative methodology ( Culley et al., 2017 ; Fernandez et al., 2006 ; Denny and Man, 2007 ; Butt and Chesla, 2007 ; Fagervold et al., 2009 ) and five were quantitative studies. All qualitative studies used semi-structured interviews as assessment except for one, which also used a story telling approach ( Denny and Man, 2007 ). Among the quantitative studies there was one cross-sectional ( De Graff et al., 2016 ), one case-control ( Ferrero et al., 2005 ), one multicentre cohort ( Fritzer et al., 2013 ), one single centre cohort (Amertuga et al., 2017) and one multi-centre case-control ( Hammerly et al., 2018 ). The sexual questionnaires used were the Sexual Satisfaction Subscale of the Derogatis Sexual Functioning Inventory (DSFI) and the Global Sexual Satisfaction Index (GSSI) ( Ferrero et al., 2005 ), Female Sexual Function Index (FSFI) and SSCS ( De Graff et al., 2016 ), Brief Index of Sexual Functioning (BISF) and Sexual History Form (SHF) ( Hammeli et al., 2018 ). The main results of the studies are shown in Table II . Ferrero et al. investigated 96 patients with endometriosis and 40 patients without diagnosed endometriosis but with infertility, pelvic pain, ovarian cysts, and uterine leiomyomas. The main objective of this quantitative study was to characterise the sexual function in women with endometriosis and deep dyspareunia. No significant differences were observed between patients with and without endometriosis regarding satisfaction with the partner, variety in sex life, and interest in sex. Still, communication about sexuality was perceived as significantly worse for endometriosis patients than for those without the disease ( Ferrero et al., 2005 ). However, other studies led to different conclusions pointing endometriosis as a cause of problems in the relationship and relationship break up and a cause of sexual problems or sexual dysfunction ( Denny and Man, 2007 ; Butt and Chesla, 2007 ; Fagervold et al., 2009 ; Fritzer et al., 2013 ). Dyspareunia was pointed as a cause of sexual dysfunction in 4 studies ( Denny and Man, 2007 ; Fagervold et al., 2009 ; Fritzer et al., 2013 ; De Graff et al., 2016 ), with two of them reporting an association between endometriosis and an avoidance of intercourse ( Denny and Man, 2007 ; Fritzer et al., 2013 ). One study points out that interventions to enable couples to address the impact of endometriosis on sexual relations are limited and those that are available are reported by couples to be unhelpful ( Butt and Chesla, 2007 ). Partners are considered the main source of support to endometriosis patients’ in a stable relationship ( Denny and Man, 2007 ; Butt and Chesla, 2007 ). Main results of studies included in systematic review of the effects of endometriosis treatment on sexual function and couple’s relationship. Abbreviations: FSFI: Female Sexual Function Index; IIEF: International Index of Erectile Function. The first study to focus on male partners was conducted by Fernandez et al. ( 2006 ). This was a qualitative study with 16 male partners that completed closed-ended questionnaires on the impact of endometriosis. Three of these participated in additional semi-structured interviews. The purpose of this study was to explore the experiences of partners of women with endometriosis. Low moods, anxiety, and powerlessness were identified and contributed to a grief-like process. Nevertheless, some also reported acceptance and relationship growth. The second study ( Butt and Chesla, 2007 ) was also qualitative and had similar results. The main objective was to investigate how living with chronic pelvic pain from endometriosis affected couples’ relationships and had identical results. Thirteen women with endometriosis and respective partners reported disruptions to day-to-day life and a significant impact on sexuality and intimacy ( Butt and Chesla, 2007 ). De Graff ( 2016 ) published the first quantitative study comparing the sexual function of couples facing endometriosis to those who do not, using a cross-sectional sample of 83 women and their partners (n=74). Women with endometriosis reported significantly more frequent pain during intercourse, higher levels of chronic pain, more sexual functioning impairment, more pain catastrophising, and more depression and anxiety symptoms. On the other hand, no significant differences were found on the Index of Erectile Function between the male counterparts, the sexual function of male partners of women with endometriosis was comparable to the sexual function of the control group, based on the Index of Erectile Function suggesting that endometriosis does not affect the sexual function of male partners. In 2017 an analysis of the ENDOPART study was published. This was a qualitative study of 22 women with endometriosis and their male partners (n=44). Contrary to the results previously published by De Graaf ( 2016 ), this study provides evidence that the impact on partners may be profound. Endometriosis affected many life domains including sex and intimacy, planning for having children, working lives and household income. Feelings of helplessness, frustration, worry and anger were also identified on male partners ( Culley et al., 2017 ). Women reported dyspareunia, general fatigue, a reduced sexual desire as a result of medication, low moods, stress in trying to conceive, bleeding during and/or after sex and feeling unattractive and unfeminine. Also in 2017, a semi-quantitative cohort study including 51 partners of women with endometriosis was published ( Ameratunga et al., 2017 ). The objective was to determine how endometriosis affects their quality of life and relationships, finances, mental state and daily living. Partners reported a significant effect on their sex life (74%) and their relationship as a whole (56%). The most recent study was a multi-centre case- control study performed between 2010 and 2015 ( Hammerli et al., 2018 ). Partners of endometriosis patients (n=236) and the same number of partners of age-matched control women without endometriosis were asked to answer selected, relevant questions of the Brief Index of Sexual Functioning and the Global Sexual Functioning questionnaire, as well as some investigator-derived questions. Many partners reported changes in sexuality (75%) and, even though a majority of both groups was satisfied with their sexual relationship, more partners of diagnosed women were not satisfied and their sexual problems more strongly interfered with relationship happiness than partners of undiagnosed women. The frequency of sexual intercourse and all other partnered sexual activities (oral sex, petting) was significantly lower. Nevertheless, the wish for an increased frequency of sexual activity and sexual desire did not differ statistically between both groups. Two studies report an absence of recognition of the impact of endometriosis on male partners and a lack of support available to men ( Culley et al., 2017 ; Ameratunga et al., 2017 ).

Endometriosis seems to affect women, their partners and the relationship unit. Women with endometriosis report a significant effect of the disease on sexual function and on the relationship. The lack of communication about sexuality, sexual problems or dysfunction and avoidance of sexual intercourse are some of the aspects pointed as possible causes for problems in the relationship and even relationship break up. Dyspareunia, although a frequent complaint, is not the only determinant of the sexual function in endometriosis patients. Women living with this condition also report more pain catastrophising and more depression and anxiety symptoms that, indirectly, may have an impact on sexual function and the relationship. Male partners are generally seen as a source of support to the patient with endometriosis. Gynaecologists that work with these patients should always inquire about the couple’s sexual health since dyspareunia is a complaint of 32-70% of women with this disease ( De Graff et al., 2013 ) and it affects multiple domains of sexual function (Rosen et al., 2006). The circle of perpetration of sexual dysfunction in women with endometriosis commonly starts with the presence of recurrent dyspareunia, and the consequent fear and anticipation of pain. Fear and anticipation of pain are two powerful inhibitors of the sexual response cycle, and the main contributors to low desire and lubrication ( Di Donato et al.,2014 ; Fritzer et al., 2013 ; Ferrero et al., 2005 ). Reducing pain at penetration is therefore the first step in the treatment of women with sexual dysfunction associated with endometriosis. This can be achieved with a combination of medical and surgical therapy, the use of a vaginal lubricant (reducing the friction caused by penetration), modification of sexual technique (increasing foreplay, delaying penetration, trying alternative sexual positions). Considering that psychological dimensions and relational mechanisms also play an important role in sexual function, sexual therapy can be very useful when sexual problems cause distress and thus improve physical intimacy. Few studies have focused on the partner’s perspective on the impact of the disease on their quality of life, sexual function and the relationship. Except for the study published by De Graaf ( 2016 ), that suggested that sexual function in male partners was not affected by endometriosis, most studies suggest that the impact on partners may be profound. In De Graaf ( 2016 ) study the majority of participants (patients and partners) were enrolled in a tertiary care centre. This means that all couples included in this study were ‘survivors’ in relationship terms and this may have underestimated the impact the disease may have in terms of sexual function and relationship. Partners of women with endometriosis report that the disease affected many life domains including sex and intimacy and their relationship as a whole. Nevertheless, even though the frequency of sexual intercourse and all other partnered sexual activities were lower, desire did not seem to be affected. The disease had an impact on planning for having children, working lives and household income and feelings of helplessness, frustration, worry and anger were identified and these may be intensified by an absence of recognition of the impact of endometriosis on male partners and the lack of support available to man. Also, the effect of medical and surgical treatment on the partners has not been directly investigated. In short, the published studies examined support the fact that endometriosis affects the couple’s sexual function and relationship. However, even though several studies included the assessment of sexual function and its impact on women with endometriosis, research on the impact of the disease and its treatment using the couple as the unit of analysis is lacking. In effect, both male partners’ perceptions and relationship dynamics are overlooked in the treatment of the disease. This leads to a lack of support available to men and to the couples, with most centres not offering neither sexual nor couples’ therapy. Since partners are generally considered a source of support to the patients with endometriosis, future research is needed to investigate the impact of endometriosis longitudinally using the couple as unit of analysis. The heterogeneity (different research methods, study aims, questionnaires used, measures to evaluate sexual function) and the small number of existing studies on the partner’s perspective of the impact of the disease on their quality of life, sexual function and the relationship are two limitations of the available evidence. Another limitation is the fact that the effect of medical and surgical treatment on the partners has not been directly investigated. Nevertheless, and to our knowledge, this is the first systematic review on the current body of knowledge on the impact of endometriosis on the couple’s relationship, taking into account relationship and sexuality perceptions from both the patients and their partners and including both qualitative and quantitative studies.

Endometriosis affects sexual function and the couple’s relationship, and research on the impact of the disease and its treatment using the couple as a unit of analysis is lacking. Women with endometriosis report a significant effect of the disease on sexual function and the romantic relationship and most of the published studies suggested that the impact on partners may be profound, affecting many life domains including sex, intimacy and the relationship in general. Even though few studies have focused on the partners, the disease seems to have a big impact on the partner’s sexual function and quality of life. Since male partners and the relationship are overlooked in the treatment of the disease there is a lack of support available to men (and couples as a whole) and most of the centres do not offer sexual or couple’s therapy. Partners are generally considered a source of support to the patients with endometriosis and future research is needed to investigate ways to address the male partner and the relationship as a whole. Data suggests that male partners should not be overlooked in the treatment of endometriosis and that psychosocial support including sexual and couple therapy might be beneficial.

Endometriosis is a benign chronic inflammatory and oestrogen dependent disease, defined by the presence of endometrial gland and stroma-like tissue outside of the uterus (Ballard et al., 2008; Berek et al., 2012). It is one of the most common gynaecological diseases. The exact prevalence of endometriosis is unknown, but estimates indicate that it affects around 10% of women of reproductive age and around 30- 50% of women with infertility and/or pelvic pain (Signorello et al., 1997). The diagnosis is based on the woman’s history, symptoms and signs. It is corroborated by physical examination and imaging techniques and finally proven by histology of either a directly biopsied vaginal lesion, from a scar, or of tissue collected during laparoscopy ( Dunselman et al., 2014 ). The most common symptoms are progressive dysmenorrhoea, deep dyspareunia, chronic pelvic pain unrelated to the menstrual cycle, and infertility (Sinaii et al., 2008). Dyspareunia is a complaint of 32-70% of women with endometriosis ( De Graff et al., 2013 ). Nevertheless, the presence of pain at penetration is not the only determinant of these women’s sexual health ( Melis et al., 2015 ). Studies on the sexual function of women with chronic diseases showed that these affect multiple domains of sexual function (Rosen et al., 2006). Endometriosis can have a significant effect on various aspects of women’s lives, including their social and sexual relationships, work, and study ( De Graaff et al., 2013 ). In addition to the classic symptoms, women with endometriosis are more likely to develop depression and anxiety (Lorençatto et al., 2006; Pope et al., 2015 ) and their quality of life may be affected by pain, the emotional impact of sub-fertility, a possible recurrence of the disease and uncertainty about the future related to repeated surgeries and the long duration of medical therapy (Berek et al., 2012). Furthermore, chronic illnesses like endometriosis are likely to affect patients’ partners. The effect of endometriosis on partners and the couple dynamic could be especially pronounced given the absence of an obvious cause or cure, the likelihood of chronic, recurring symptoms and the potential impact on both sex and fertility ( Dunselman et al., 2014 ). A number of studies in women have evaluated the negative effect of the disease on sexual function ( Ferrero et al., 2005 ; Fritzer et al., 2013 ; De Graaff et al., 2016 ) and the effect of surgery and hormonal treatment on deep dyspareunia. However, the extension and duration of the positive effects of treatment are not well defined and overall sexual function and the quality of the relationship remain under-investigated. Studies on the partners and the relationship are scarce, and given the growing evidence on the importance of the partner in the process of coping with other chronic illnesses there is a need to focus on the impact of endometriosis on partners and the relationship. The need to investigate the psychosocial impact of endometriosis on women and partners was highlighted in the 2013 ESHRE Guidelines on The Management of Women with Endometriosis (European Society of Human Reproduction and Embryology, 2013). Here we aim to shed some light on sexuality and the couple’s relationship, including the partner’s perspective on the impact of the disease, an aspect usually overlooked. The aim of this article is to review the current body of knowledge on the impact of endometriosis on the couple’s relationship and male partners. To our knowledge, this is the first systematic review on endometriosis that takes into account the perceptions of both the relationship and sexual function perceptions, the partners’ perspective and that includes both qualitative and quantitative studies.

This systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)guidelines (MoherET AL., 2009). We searched the electronic databases PubMed and MEDLINE to identify English language, peer-reviewed journal articles published between January 2000 and December 2020 on the effects of the disease and of its treatment on sexual function, the couple’s relationship and on the partner. The following combination of MeSH terms was used: (‘endometriosis’) AND (‘dyspareunia’ OR ‘sexual function’ OR ‘sexuality’ OR ‘sexual dysfunction’) AND (‘relationship’ OR ‘couple’ OR ‘marital adjustment’). All relevant articles were examined, and their reference lists were systematically reviewed to identify other studies for potential inclusion in this review.