Living with adenomyosis and involuntary childlessness: a qualitative interview study

BACKGROUND: Adenomyosis is a chronic gynecological condition associated with pain, abnormal uterine bleeding, and impaired fertility. However, little is known about the psychosocial experiences and coping strategies of individuals with adenomyosis and involuntary childlessness. This study aimed to explore their experiences, perceived psychological burden, and coping strategies, while additionally incorporating the perspectives of gynecological specialists. METHODS: This qualitative interview study included 20 individuals with a medically documented diagnosis of adenomyosis recruited across three German-speaking countries as well as five specialists in obstetrics and gynecology practicing in Germany. Semi-structured online interviews addressed diagnostic and healthcare experiences, information needs, psychological burden, and coping strategies. Data were analyzed using qualitative content analysis with summarizing and structuring approaches, complemented by thematic-descriptive analysis. RESULTS: Participants described prolonged pathways to diagnosis, including experiences of misdiagnosis and perceived medical invalidation, as well as fragmented care, insufficient information, and limited psychosocial support. They reported substantial psychosocial burden in the context of chronic symptoms and involuntary childlessness. Coping strategies included self-care, boundary-setting, social support, stable relationships, psychotherapy, peer exchange, and maintaining a positive mindset. Feeling taken seriously by healthcare professionals and receiving a diagnosis were frequently described as important experiences in the coping process. Specialists provided complementary perspectives and reported structural barriers, including limited consultation time and insufficient reimbursement. Concomitant or suspected endometriosis was documented in a substantial proportion of participants, limiting the attribution of reported symptoms and burden specifically to adenomyosis. CONCLUSION: The study shows that individuals with adenomyosis and involuntary childlessness experience prolonged diagnostic delays, fragmented care, and significant psychosocial burden, underscoring the need for holistic, patient-centered care that integrates medical, psychosocial, and reproductive health needs. Given the qualitative and diagnostically heterogeneous sample, these findings should be considered hypothesis-generating and warrant further evaluation in larger, more diverse studies.