Living in limbo: Meanings of living with fecal incontinence as narrated by women after treatment for pelvic cancer

ABSTRACT Purpose After pelvic radiotherapy, individuals suffer from loose stools and defecation urgency, often resulting in fecal incontinence (FI). Women who have been treated for pelvic cancer report FI as one of the most troubling symptoms, yet they avoid seeking healthcare due to shame and stigmatization. There is a lack of knowledge concerning women’s lived experiences of FI in daily life after pelvic radiotherapy. The objective was to illuminate meanings of living with FI among women previously treated with radiotherapy for gynecological or rectal cancer. Method Interviews were performed with ten women, treated with pelvic radiotherapy. Data were analyzed with phenomenological-hermeneutic method. Results Living with FI, was illuminated by one overarching main theme: Living in Limbo, consisting of two themes (including three sub-themes each): Living in uncertainty and Wanting to take part in life. Conclusion Living with FI means that life is no longer the same as before the disease and treatment. The new life is lived in limbo, which means a daily struggle with insecurity because of the lack of control over one’s body. It is also a struggle to take part in life, keep one’s human dignity intact, experience meaning in life and can be and do what one wants.