"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.

People with a permanent stoma described embodied and relational disruptions to sexual wellbeing, including altered body image, stoma-related concerns, and fear of partner rejection.

• This was the first of three interrelated themes identified through reflexive thematic analysis.
• The sample was 25 adults with a permanent stoma (17 female, 8 male; aged 21-59 years) from the UK, Ireland, North America, and Australia.
• Semi-structured telephone interviews were audio-recorded and transcribed verbatim; they were conducted between September 2023 and March 2024.

Participants experienced structural silence and stigma in care, with limited or absent professional discussions about sexual wellbeing and unmet informational needs.

• This was the second theme identified.
• A lack of timely, relevant, and accessible information, along with perceived discomfort among healthcare professionals, contributed to distress, stigma, and isolation.

Participants advocated reframing sexual wellbeing as a legitimate domain of care, calling for tailored, patient-centered support.

• This was the third theme identified.
• Participants wanted support that addressed their individual needs rather than being absent or generic.

Participants understood sexual wellbeing as extending beyond sexual function to include emotional, relational, and identity-related dimensions.

• This contrasts with existing research, which has largely focused on sexual dysfunction.
• The findings point to the importance of psycho-emotional and relational aspects of sexuality in stoma care.

Sexual wellbeing is a neglected component of stoma care, which leads to unmet needs and negatively affects adaptation to living with a stoma.

• Stoma surgery is often lifesaving, but adjustment can involve significant physical, psychological, and relational challenges.
• The authors call for a shift beyond dysfunction-focused models to holistic, patient-centered approaches.

The authors recommend integrating sexual wellbeing into routine stoma care through proactive, normalized discussions, multidisciplinary support, and patient-informed resources.

• Resources should reflect the lived experiences of people with a stoma and meet their informational needs.

The study has strengths and limitations related to its sample.

• Strengths: an international sample and rich qualitative data on the psycho-emotional dimensions of sexual wellbeing.
• Limitations: a predominantly female Western sample, missing ethnicity data, and limited urostomy representation.
• Participants were recruited via a prior international online survey, and only English speakers were included.