Endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus (1). It affects roughly 10% (190 million) of reproductive-age women and girls globally and can cause infertility (2). According to the WHO (1), endometriosis symptoms include a combination of painful menstrual periods, chronic pelvic pain, pain during and/or after sexual intercourse, painful bowel movements, painful urination, fatigue, depression or anxiety, abdominal bloating, and nausea. Given the variability and broad symptoms involved, endometriosis is not easily diagnosed by healthcare workers, potentially causing a lengthy delay between symptom onset and diagnosis (3). Diagnosis can take seven years on average after symptom onset (4) but ranges from four to 11 years (5), suggesting a major impact on women's psychological well-being both before diagnosis and after (6). Indeed, a recent meta-ethnography in which the illness experience of endometriosis patients across the globe was investigated stressed the negative impact of this disease on many aspects of life (7). Specifically, the authors found that women with endometriosis encountered a multitude of problems including infertility, difficulty in maintaining intimate relationships (both emotional and physical) with their partners, psychological distress, negative emotions that could lead to suicidal ideation, low sense of self, low productivity at work, increased absenteeism, poor academic performance, social isolation, and low quality of life (7).

In Israel, the recognition and management of endometriosis have received growing attention at both policy and societal levels in recent years. The Israeli Ministry of Health has launched several initiatives aimed at raising awareness and improving the diagnosis of endometriosis through public health campaigns, with a focus on early detection and patient education (8). In this context, Wertheimer and colleagues (9) found that the average delay in diagnosing endometriosis in Israel is 11.2 years, which can be divided into two phases. The first phase involves an average delay of 4.6 years from the onset of symptoms to the point of reporting them to a medical professional, while the second phase includes an average delay of 6.6 years from the initial reporting to receiving a formal diagnosis. Their study also revealed that younger women experienced shorter diagnostic delays. Notably, only about 42% of the women reported that a medical professional was the first to raise the suspicion of endometriosis. The remaining women became aware of the possibility of endometriosis through media exposure, the activities of associations, independent online research, or conversations with acquaintances (9). Today, endometriosis is included in the basket of health services provided under national health insurance, offering more comprehensive and accessible treatment options for affected women (10).

In addition to endometriosis's impact on the woman's life, it also has an impact on the woman's partner's life. The negative emotions that have been reported among patients' partners include depression, anxiety, helplessness, frustration, worry, and anger (11–13). Additionally, partners of women with endometriosis have reported negative effects on their sex life (i.e., lack of communication about sexuality, sexual dysfunction, avoidance of sexual intercourse), intimacy, and the couple's relationship (14, 15).

Moreover, as endometriosis is a shared experience within the couple (16), several researchers have explored dyadic relations and marital satisfaction in the context of endometriosis (15–18). For example, Facchin and colleagues (17) revealed that women who perceived their partner as being more interested and actively involved in the management of their endometriosis (for instance by accompanying them to medical visits) reported greater relational satisfaction and better dyadic coping.

Considering the impact of endometriosis on both spouses, it is important to recognize that Israel's cultural landscape is heavily shaped by traditional values and societal expectations surrounding marriage, family, and procreation (19). There is a particularly strong emphasis on family life and childbearing, with significant social pressure on couples to have children soon after marriage (20). This cultural expectation often intensifies the emotional and psychological distress experienced by women diagnosed with endometriosis, who may already be struggling with issues related to infertility and intimacy (21). Partners may also feel an increased sense of responsibility to support their spouses, reflecting cultural notions of marital solidarity and traditional gender roles (13).

Taken together, it seems clear that endometriosis is a physically and mentally debilitating disease, with high emotional costs for both patients and partners (18). However, less is known about patients' and partners' pre-diagnosis experience, and whether the pre-diagnosis period impacts the acceptance of the diagnosis as well as the post–diagnosis period. Based on the Biopsychosocial Model (22), which emphasizes the complex interactions between biological, psychological, and social factors in understanding health and illness, we aimed to explore the experience of patients and their partners throughout their endometriosis “journey”—from pre-diagnosis, to receiving the diagnosis, to post-diagnosis management. By adopting this model, our study acknowledges that the experience of endometriosis extends beyond physical symptoms, impacting intimate relationships, self-identity, and social participation (23). Gaining a deeper understanding of the experiences of both couple members will provide professionals in the field with knowledge regarding the design of suitable interventions addressing both patients' and partners' needs.

In this study we used a qualitative-phenomenological approach (24), exploring participants' experiences with endometriosis so as to understand the phenomenon. This approach allows researchers to gain a rich understanding of the interviewees and uncover meaningful insights about the complex phenomenon under study (25). By focusing on participants’ lived experiences, phenomenological inquiry seeks to capture the essence of how individuals perceive and make sense of their condition, providing depth and context to their emotional and relational responses (25).

This section presents three key themes from interviews with women diagnosed with endometriosis and their partners. These themes explore the emotional, physical, and relational challenges experienced across the pre-diagnosis, diagnosis, and post-diagnosis stages, highlighting the impact of endometriosis on both individuals and their relationships.

In this study we explored the individual coping within the dyad and dyadic experience of women with endometriosis as well as that of their partners in their journey of coping with the disease, from pre-diagnosis to receiving the diagnosis to post-diagnosis. The findings revealed that endometriosis has a profound impact not only on the women diagnosed but also on their partners and the couple as a whole. The diagnosis process and subsequent coping strategies are intertwined with emotional, relational, and societal factors, shaping how both partners experience and respond to the condition. The findings underscore the multifaceted nature of coping with endometriosis, which aligns with Engel's Biopsychosocial Model (22). This model posits that health and illness are influenced not just by biological factors but also by psychological and social dimensions. In this context, the coping mechanisms observed in both women with endometriosis and their partners illustrate the interconnected nature of emotional, relational, and societal factors in shaping responses to this chronic condition. This study highlights the need to view endometriosis as a shared experience within relationships, where both individual and dyadic coping mechanisms play crucial roles in navigating the challenges posed by the disease.

In the first theme, ‘Relationship in the shadow of uncertainty’: Coping with health symptoms prior to the formal endometriosis diagnosis”, the women presented a range of coping mechanisms, from detachment and handling their health symptoms on their own to recognizing the significance of collaboratively (i.e., with their partners), addressing the symptoms and their impacts. This duality between individualism and interdependence brought with it a spectrum of emotions, ranging from guilt and shame to feelings of acceptance and understanding that coping with these uniquely female symptoms needed to be a shared experience. In addition, the first theme's findings point to the long and painful road that the women and their partners had to travel in order to receive a formal diagnosis. Indeed, previous studies have shown the complexity of receiving a diagnosis of endometriosis (33, 34). The findings of the current study reinforce these earlier findings by showing that there are also emotional and marital implications resulting from the mere seeking of an accurate diagnosis. Pre-diagnosis, the current study participants experienced feelings of uncertainty and stress. According to several previous studies, stress in couple relationships is no longer conceptualized as an individual phenomenon but rather as a dyadic stressor (35, 36). Dyadic coping entails mutual involvement of both partners: providing and receiving support from each other and engaging in joint problem-solving activities and shared emotion regulation (37). In line with this notion, Bodenmann (35) coined the term “we-ness”, referring to the function of dyadic coping as enhancing mutual trust and intimacy, mutual attachment and commitment. In this context, the Biopsychosocial Model (22) suggests that emotional responses to health symptoms are not solely individual experiences but are also shaped by interpersonal and social dynamics. This highlights the importance of viewing the pre-diagnosis coping efforts within the broader context of the couple's relationship and the societal expectations surrounding gendered experiences of health. Yet in our study, some of the women preferred, during the pre-diagnosis phase, to cope with their symptoms individually, within the context of the relationship, rather than engaging in joint coping as a couple.

The second theme, “Coping together or alone when receiving the endometriosis diagnosis”, demonstrated how meaningful the presence of a partner during the diagnosis process was, as this presence enabled both partners to offer each other mutual support and also allowed the male partner to understand the meaning and consequences of the disease. Indeed, endometriosis is not solely a female disease; it also affects the partner in various ways, such as in terms of intimacy, fertility, and overall quality of life (38, 39). The presence of a partner during the diagnosis process can help alleviate some of the stress and anxiety associated with the disease and can facilitate open and honest communication about the disease's impact on the relationship.

The significance of mutual support during the diagnosis aligns with the Biopsychosocial Model's emphasis on the role of social and relational factors in health outcomes (22). The model helps elucidate how the presence of a partner not only provides emotional and instrumental support but also contributes to understanding the psychological burden of the diagnosis and the challenges in maintaining intimacy and communication in the face of a chronic illness like endometriosis.

Our findings also indicated that some couples struggled with a kind of tension between hiding their feelings upon receiving the diagnosis (so as to appear strong in the face of it) and revealing their true emotions/fears to their partner. This internal pressure and conflict between hiding vs. revealing feelings/fears may be related to societal expectations of how individuals should respond to a medical diagnosis, particularly as it pertains to gender roles and expectations. Studies have shown that gendered expectations can influence how individuals cope with illness and how they express their emotions [e.g., (40)]. Specifically, women are often expected to express their emotions more freely than men, who may be socialized to suppress their emotions and appear strong and stoic in the face of adversity.

In this context, the concept of “strength” as it applies to men can be further explored. Societal expectations often frame men as the 'strong figure' in relationships, responsible for providing support and maintaining composure. This notion was reflected in the coping strategies seen in our study, where men often emphasized rationality and technical approaches to understanding the diagnosis and managing their partner's health. These coping mechanisms align with existing research, which shows that men tend to use problem-solving and emotionally distanced approaches as a way of maintaining control in the face of stress (41). Such approaches, while seen as manifestations of strength, may also limit emotional expression, contributing to feelings of isolation within the couple dynamic (42).

Indeed, such notions may apply to the findings of the current study, in which couples felt pressure to hide their emotions and appear strong in front of their partners, and this was particularly the case for the men. However, hiding emotions and appearing strong may not always be helpful in coping with the emotional impact of a diagnosis, as it may lead to feelings of isolation and lack of support (43).

The third theme, ‘The day after the diagnosis’: Moving between adversity and growth”, highlights the dialectical lens, viewing the adversity that accompanies the endometriosis diagnosis and the personal/couple growth as potentially coexisting phenomena. Specifically, both members of the couple reported that initially they felt relief that the disease finally had a name, particularly as it took so long to receive a diagnosis. The women hoped that now their medical treatment would be accurately targeted, and that their partners would be better able to support/understand them. However, when the exact meaning of the disease became clear to both couple members, and they became more informed, their distress became apparent once again: Women had to deal with anxiety, depression, and low self-esteem pertaining to the various implications of their diagnosis, and their partners had to deal with hopelessness and difficulty in relieving their partners' pain. In this context, Missmer and colleagues (44) found that the most frequent symptoms that negatively affected various areas of the lives of women diagnosed with endometriosis, including their intimate relationships, were pelvic pain apart from menstruation, painful menstruation, and painful sexual intercourse.

Distress and concern about fertility, in light of the endometriosis diagnosis, also emerged among both couple members. Indeed, women with a history of endometriosis have twice the risk of infertility compared with women without a history of endometriosis (45). In this regard, Moradi and colleagues (46) indicated that the worrying about the possibility of infertility adds to the burden of endometriosis, and negatively affects psychological health, marital relationships, and social interactions, and causes feelings of stigmatization and hopelessness. Thus, it was not surprising that once the symptoms received the “endometriosis” label, dealing with fertility became a cause for additional distress. Nevertheless, some of the positive impacts of receiving the diagnosis – namely, personal and couple growth – also became clear. Women showed self-efficacy in terms of finding tailored and personalized treatments, in addition to standard care, and handling the medical setting in a more effective way. Their partners indicated that finally having a diagnosis strengthened their ability to communicate with their partner, as well as the intimate relationship itself. Our findings echo previous findings (13) regarding men's descriptions of how they live with their partners' endometriosis. The researchers of that study stressed several positive impacts including the development of a supportive approach to the partner which strengthened the relationship, becoming a more sympathetic person and a better partner, and being closer to the partner. These results suggest the possibility of posttraumatic growth (PTG), which is defined as the positive psychological change experienced as a result of a struggle with highly challenging life circumstances (47). In this regard, Marki and colleagues (48) revealed, via the use of focus groups with women who had a confirmed endometriosis diagnosis, that despite many difficulties and problems, women described positive impacts on their life, such as peace, patience, openness, personality development, and gratitude, after they had accepted the diagnosis.

The coexistence of adversity and growth within couples coping with endometriosis reflects the Biopsychosocial Model's framework (22), which recognizes that psychological resilience and adaptation are influenced by an interplay of biological challenges (e.g., physical symptoms), psychological responses (e.g., depression, anxiety), and social support structures (e.g., relational dynamics). This integrated perspective can help explain the potential for posttraumatic growth despite the substantial physical and emotional burdens posed by endometriosis.

The current study had a few limitations. First, the sample was composed mainly of heterosexual couples, with limited variability in socioeconomic status. Additionally, the study did not collect relevant demographic characteristics such as nationality, religion, levels of religiosity, or geographic distribution, which may have impacted the participants' experiences and the generalizability of the findings. Second, the endometriosis-specific information (e.g., disease stage/grading, confirmed diagnosis) was self-reported and not clinically confirmed. Third, most of the study's interviewers were members of the Endo Israel Community Association. Thus, their personal experience of both having the disease and conducting the interviews must be taken into consideration. We would recommend, going forward, that additional experiences among both endometriosis patients and their partners in a more heterogeneous sample be examined.