Experiences of incontinence and pelvic floor muscle training after gynaecologic cancer treatment

The purpose of the present study is to describe how gynaecological cancer survivors (GCS) experience incontinence in relation to quality of life, their possibilities for physical activity and exercise and their perceptions and experiences of pelvic floor muscle training. This qualitative interview content analysis study included 13 women (48-82 age) with urinary (n = 10) or faecal (n = 3) incontinence after radiation therapy (n = 2), surgery (n = 5) and surgery and radiation therapy (n = 6) for gynaecological cancer, 0.5-21 years ago. Symptoms related to incontinence and restrictions in daily activities reduced physical quality of life. Emotions related to incontinence reduced psychological quality of life and social and existential quality of life, due to restrictions in activity and feelings of exclusion. Practical and mental strategies for maintaining quality of life were described, such as always bringing a change of clothes and accepting the situation. Possibilities for sexual and physical activity as well as exercise were also restricted by incontinence. The women had little or no experience of pelvic floor muscle training but have a positive attitude towards trying it. They also described a lack of information about the risk of incontinence. The women were willing to spend both money and time on an effective treatment for their incontinence. Nine out of 10 were willing to spend at least 7 h a week. GCS experienced that incontinence reduced quality of life and limited possibilities for sexual and physical activity as well as exercise. Coping strategies, both practical and emotional, facilitated living with incontinence. The women had a positive attitude towards pelvic floor muscle training. Lack of information had a negative impact on their way of dealing with the situation.Funding Agencies|Swedish Cancer Society; Kamprad Family Foundation for Entrepreneurship, Research and Charity; Linkoping University; Region Ostergotland; FORSS (The Research Council of Southeast Sweden)