Many women do not seek early treatment for pelvic organ prolapse due to confusion and a lack of awareness around the condition’s symptoms – and feelings of shame and embarrassment – according to new research.
The study, led by the Nursing, Midwifery and Allied Health Professions Research Unit (NMAHP-RU) at the University of Stirling, also found that a lack of awareness among GPs, their dismissive responses to women’s symptoms and a lack of proactive care further contributed to delays in diagnosis and treatment of prolapse.
Pelvic organ prolapse is very common – affecting about 40 per cent of women over 40 years of age. It occurs when pelvic organs – the bladder, bowel or womb – descend into the vagina, causing distressing symptoms that adversely affect quality of life.
The condition often causes pain and discomfort, incontinence, sexual difficulties and psychological distress. Conservative treatments – such as physiotherapy, pessaries and lifestyle changes – can be effective if prolapse is detected early, before needing surgical repair.
Dr Purva Abhyankar, a lecturer at the University of Stirling who led the new study, said: “As part of our research, we conducted focus groups with women receiving prolapse care across three UK regions. This provided a valuable insight into women’s experiences of care and identified important gaps in the care and services offered to patients with prolapse.
“We found that women’s own confusion and lack of awareness around prolapse symptoms, coupled with feelings of shame and embarrassment, prevented them from seeking early help for symptoms.
“Even when they did seek assistance from their local doctor, symptoms were often dismissed as being ‘not too bad’ or a ‘bit loose’. Women reported that they were ‘not taken seriously’ until their symptoms became more severe.
“By the time prolapse was suspected and a specialist referral made, the condition had progressed to the extent that surgery was the only viable option left.”
Lecturer, University of Stirling
The study highlights a need for greater awareness and education among women, as well as healthcare professionals about prolapse and its treatment. Women presenting with prolapse symptoms need to be listened to by healthcare professionals, offered better information about treatment choices, and supported to make a decision that is right for them.
The study – involving the NMAHP-RU unit at Glasgow Caledonian University, the University of Leicester and NHS Greater Glasgow and Clyde – involved four focus groups with a total of 22 women who have received prolapse care through urogynaecology services across three NHS UK regions.
Women were asked about their experiences of living with prolapse and of interacting with health professionals when seeking help for symptoms, receiving a diagnosis, making treatment decisions, undergoing treatments, and follow-up care. They were also asked about their thoughts on improving services and care in future to meet the needs of women.
The team found that women received little or no choice in terms of prolapse treatment and had little involvement in decision-making. Health professionals often influenced treatment decisions by the way they outlined the available options and there was little or no discussion around the pros and cons of certain treatments, women’s lived experience of prolapse, and experience of any prior treatments.
In addition, the study found that women regarded the process of undergoing different prolapse treatments – such as pelvic floor muscle training (PFMT), vaginal pessaries, or surgery – as one of trial and error. Physiotherapy-based treatments, including PFMT, were valued by women as it helped them to regain control over their symptoms, improving their quality of life.
Dr Abhyankar said: “Our findings echo women’s experiences from across the world – including Europe, America and Asia – but also provide new evidence and unique insights into their experiences of involvement in decisions around diagnosis and treatment.
“The study highlights a need for greater awareness and education among women, as well as healthcare professionals about prolapse and its treatment. Women presenting with prolapse symptoms need to be listened to by healthcare professionals, offered better information about treatment choices, and supported to make a decision that is right for them.
“We hope our research will provide a foundation for designing and improving health services in the UK and internationally.”
The research, Women’s experiences of receiving care for pelvic organ prolapse: a qualitative study, is published in BMC Women’s Health. It forms part of the larger PROPEL study, funded by the National Institute for Health Research (NIHR) and led by Principal Investigator Professor Margaret Maxwell, Director of NMAHP-RU at Stirling.