“ You don’t know what it’s like until you live with it :” A qualitative study on experiences of sexual wellbeing after permanent ostomy formation
Simona Fourie, Lucy Jane Johnstone, Sara MaAbstract
Background
The impact of stoma formation on sexual wellbeing (SWB) remains underexplored. While stoma surgery is often lifesaving, adjustment can involve significant physical, psychological, and relational challenges. Existing research has largely focused on sexual dysfunction, with less attention to the broader, multidimensional nature of SWB that includes psycho-emotional aspects.
Aim
The study aimed to explore the lived experiences of individuals with a permanent stoma in relation to their SWB and associated healthcare.
Methods
English-speaking adults with a permanent stoma were recruited via a prior international online survey. Semi-structured telephone interviews were conducted between September 2023 and March 2024. Interviews were audio-recorded, transcribed verbatim, and analyzed using reflexive thematic analysis.
Results
Twenty-five participants, F = 17 M = 8 (aged 21-59 years) from the UK, Ireland, North America, and Australia were included. Three interrelated themes were identified: (1) embodied and relational disruptions to SWB, including altered body image, stoma-related concerns, and fear of partner rejection; (2) structural silence and stigma in care, characterized by limited or absent professional discussions and unmet informational needs; and (3) the need to reframe SWB as a legitimate domain of care, with participants advocating for tailored, patient-centered support. Across accounts, participants described SWB as extending beyond sexual function to encompass emotional, relational, and identity-related dimensions. A lack of timely, relevant, and accessible information, alongside perceived discomfort among healthcare professionals, contributed to feelings of distress, stigma, and isolation.
Clinical Implications
Findings highlight the need to integrate SWB into routine stoma care through proactive, normalized discussions and multidisciplinary support, underpinned by patient-informed resources. This study highlights the importance of addressing psycho-emotional and relational aspects of sexuality within stoma care practice.
Strenghts and Limitations
The study strenghts include its international sample and rich qualitative data, offering insights into the psycho-emotional diemnsions of sexual wellbeing, while limitations include a predominantly female Western sample, missing ethnicity data and limited urostomy representation.
Conclusion
SWB is a neglected component of stoma care, leading to unmet needs and a negative impact on adapting to living with a stoma. Addressing SWB requires a shift beyond dysfunction-focused models toward holistic, patient-centered approaches that reflect the lived experiences of individuals living with a stoma and meet their informational needs.