Hypothesis / aims of study
Female Genital Mutilation/Cutting (FGM/C) has been carried out on 230 million girls and women worldwide according to UNICEF’s 2024 global assessment — an increase of 30 million compared with the estimate published eight years ago (1). The ICS White Paper spotlighted a focus on eradiction, education and, for pelvic health specialists, appropriate management of those affected (2). While clinical sequelae of FGM, including urinary and bowel symptoms, are documented, there is limited understanding of the lived experiences, impact, and unmet needs of women with urinary incontinence post-FGM/C (3).
Engagement with UK Somali women, a country with high FGM/C prevalence, revealed bladder symptoms as a recurring concern, prompting this preliminary qualitative study. Here we examined the lived experiences of women with FGM/C and urinary incontinence to identify unmet needs and to explore if knowledge gaps pose considerations for healthcare provision and research topics.
Study design, materials and methods
Women aged ≥18 years with self reported FGM/C and urinary incontinence participated in semi structured qualitative interviews conducted by a researcher embedded in the relevant communities. Trauma informed study materials were developed, and trusted community leaders supported recruitment. Interviews were transcribed verbatim and analysed inductively to identify emerging themes.
Results
Fifteen Somali women participated in interviews lasting 60 minutes on average. Women were aged between 35 and 52. Urinary urgency, increased daytime urinary frequency and nocturia were commonly reported alongside predominantly stress urinary incontinence. Women described physical, psychological and social impacts of incontinence that are well recognised, alongside detriments that are specific to their cultural practices:
“I don’t stay out long. I plan where I’m going.”
“I often miss my prayers because I don’t feel clean.”
Stigma, normalisation of symptoms, and limited disclosure to family or healthcare professionals were described:
“[I have] not gone to the GP before, because I thought it was normal.”
“I believed only old people suffer from incontinence not young people.”
Coping strategies included fluid restriction, journey planning, and pelvic floor exercises. Limited access to culturally appropriate information was highlighted:
“British GPs don't understand, no knowledge, no clue.”
“Medical field is not educated enough in the field of FGM”
“The emphasis is on the prevention of FGM rather than supporting women who have already experienced it.”
“GP's often don't know what FGM services are available.”
“…lots of experience of doctors, who don't know what to do.”
Appropriateness of existing management was also questioned:
“I feel numb after trying the exercise - I can't feel if the exercise is having any effect.”
“I’ve tried medicines but it hasn’t helped much”.
Interpretation of results
Well documented impacts of urinary incontinence were reported but specific considerations for women who have experienced FGM/C emerged during this study. Women report a lack of awareness that their symptoms can be treated and avoidance of disclosure due to cultural expectations. Service provision, when sought, fails to provide care that is informed in the context of FGM/C. Little is also known about the efficacy of evidence based strategies in women who have experienced FGM/C.
Concluding message
FGM/C is a global issue and little is known about its association with incontinence and its wider impact. Women affected by FGM/C have described additional barriers to continence care, including low awareness of treatable symptoms, cultural pressures limiting disclosure. specific cultural impacts on daily life, and services that lack cultural and trauma informed competence. Evidence on the effectiveness of interventions for those with altered anatomy is scarce, highlighting the need for targeted research and more responsive, culturally appropriate care pathways.