Coping together: a qualitative exploration of challenges identified by couples living with endometriosis

Persons diagnosed with endometriosis report deleterious effects to their physical, psychological, and relational well-being. While some couples state that these challenges extend beyond the person in pain to also affect their partners, other couples have described positive changes to their lives associated with their ability to adapt to endometriosis. These differential experiences indicate that relational dynamics are involved when coping with a condition like endometriosis, yet there have been few investigations with concurrent inclusion of both members of the couple.

This study investigates the experiences of both partners' coping, addressing their individual perspectives and shared narrative around the management of endometriosis.

Couples coping with endometriosis were recruited as part of a larger, mixed-methods study focused on understanding their lived experience. Persons diagnosed with endometriosis and their partner (N=49 couples) participated together in semi-structured interviews probing challenges, successes, and strategies used to cope with endometriosis. Following an inductive approach to thematic analysis, data underwent iterative comparison of codes by 2 independent coders.

Distinct themes were developed within 2 domains: Shared Challenges and Coping Together. Under Shared Challenges, the themes of Compounded Illness Burden, Psychological Barriers, and Undermined Agency are described. Within Coping Together, couples described Mutual Support and Psychological Resilience, encompassing the importance of learning new physical and psychological and coping strategies, including lifestyle changes, acceptance, and emotional support.

Findings highlight the potential benefits of a relational framework and how partnered coping processes provide support and impact both the person with endometriosis and their partner. Recommendations for clinicians and efforts to develop psychosocial support programs for endometriosis include collaborative, multidisciplinary care models that provide support to patients and partners.