“I felt like a woman”: A phenomenological qualitative study of disease-related experiences in Mayer-Rokitansky-Küster-Hauser syndrome (MRKH syndrome)

Abstract

This study aimed to examine the psychosocial problems and their effects experienced by individuals diagnosed with Mayer-Rokitansky-Küster-Hauser syndrome (MRKH syndrome) who had undergone surgical operations. Ten patients who had undergone a McIndoe operation after a MRKH syndrome diagnosis were recruited with a convenience sample. Data collection was conducted at the Department of Obstetrics and Gynecology of a university hospital in Türkiye. This study produced four main themes: (1) Emotional Turmoil Upon Diagnosis, (2) Challenges to Sexual Identity and Intimate Relationships, (3) The Profound Impact of Infertility, and (4) Navigating the Complexities of Surgical Treatment. This study revealed that MRKH syndrome individuals experienced psychological reactions such as shock, resentment, anger, and sadness throughout their journey with the disease, including both before and after undergoing surgical operations. The study sheds light on the psychological needs of individuals (particularly during the initial diagnosis and postoperative period), offering important implications for nurses caring for such individuals.