Grief, adjustment, and acceptance: A qualitative study of mental health, coping, and identity in people with Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH)

Receiving a diagnosis of Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH) presents unique challenges. Little is known about MRKH-related mental health, coping, and identity across the lifespan or the role of positive adaptation in individuals’ experiences of MRKH. Participants completed interviews on mental health, family planning, sexual well-being, relationships, and healthcare experiences. A reflexive thematic analysis approach was used to analyze the data. Three themes represented experiences of living with MRKH: grief, adjustment, and acceptance. Our analysis reconstructed a common pattern across participants’ retrospective accounts, in which experiences of grief were often described in relation to the period following diagnosis, while adjustment and acceptance were frequently reflected in participants’ narratives of living with MRKH. Participants’ experiences of mental health, coping, and identity differed across the three themes. The results suggest that many people with MRKH demonstrate psychological resilience and describe enhanced well-being alongside experiences of grieving, adjustment, and acceptance.