Sexual quality of life in young gynaecological cancer survivors: a qualitative study

PURPOSE: The impact of cancer diagnosis and treatment on sexual quality of life (SQoL) is a significant and often neglected issue in the treatment and survivorship period of young gynaecological cancer survivors (YGCS). This study sought to explore women’s lived experiences to understand how to protect and improve SQoL. METHODS: A qualitative study with women aged 18–45 and pre- or perimenopausal at diagnosis (n = 15). A thematic analysis was performed in NVivo. Participants also completed a pre-interview questionnaire and The Female Sexual Distress Scale-Revised (FSDS-R). RESULTS: YGCS experienced high psychosexual distress. Notably, seven themes were identified: adjustment, confidence, fear, loss, shame, trauma, and communication. Gynaecological cancer (GC) treatment interfered with everyday life and had a long-term impact on mental, physical, and emotional health, with many reporting an altered sense of self, body image and sexual identity. Single women felt vulnerable in new relationships, while partnered women reported low sexual desire and guilt about sexual difficulties. Open communication, emotional intimacy, and an acceptance of the ‘new normal’ buffered the trauma of cancer and were vital to relationship satisfaction. Lastly, absent, or blunt patient-clinician communication contributed to psychosexual distress. CONCLUSION: GC interferes with sexual function, partner relationships, psychosexual wellbeing, and quality of life. A better understanding of the lived experiences of YGCS can help healthcare providers to adopt a holistic, patient-centric, and multidisciplinary approach to SQoL. YGCS want psychosexual communication and support, across all stages of treatment and care. Healthcare providers should initiate and normalise conversations on the impact of treatment on SQoL. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11136-023-03386-1.