Summary
A study published in the International Journal of MS Care examined experiences with bladder and bowel symptoms in MS. The study identified three key themes: the impact of symptoms on quality of life, barriers to accessing care, and strategies used to manage symptoms. The findings highlight important gaps in education, communication, and access to treatments that can support bladder and bowel care for people with MS.
Background
Bladder and bowel symptoms are common in MS. They can affect daily life in many ways, including physical comfort, emotional well-being, independence and social activities.
Managing bladder and bowel symptoms with MS can be complex, and getting the right support can make a big difference. Care may require a team of specialists, including neurologists, urologists, gastroenterologists, continence nurses and pelvic floor physiotherapists. However, access to this type of specialized care is not always consistent, leaving many people living with MS struggling to get the care and support they need.
Although support and treatment options are available, bladder and bowel symptoms are not always discussed during MS appointments. Some people living with MS may feel uncomfortable bringing up these concerns, and healthcare providers may not always be aware of symptoms unless they are discussed during appointments. These findings highlight the importance of including bladder and bowel health as part of ongoing MS care.
In this study, researchers reviewed a total of 14 studies, involving 211 people living with MS and 44 healthcare providers, to better understand experiences with bladder and bowel care and identify factors that influence access to appropriate support and care.
Results
The researchers identified three key themes:
Impact on quality of life:
Bladder and bowel symptoms can have a significant impact on daily life. Across the studies, people described changing their routines, limiting activities, and staying close to a bathroom because of concerns about urgency, accidents, embarrassment and stigma connected to these symptoms. These challenges made it harder for people to stay active and connect with others through social activities.
Barriers to accessing care:
The study also identified challenges for both individuals and healthcare providers. Some individuals felt uncomfortable discussing symptoms, they were not sure if changes in bladder or bowel function were related to their MS, or there was uncertainty about available treatment options. Healthcare providers reported challenges like limited time for appointments, gaps in knowledge and training, and when to refer people to pelvic floor physiotherapists or other healthcare professionals with expertise in bladder and bowel management.
Symptom management strategies:
Many people relied on self-management approaches to cope with symptoms, like choosing activities or locations with nearby toilets. The study found that many people were not aware of the treatments and support options available to them, including pelvic floor physiotherapy, and the need for improved education and referrals to specialized care.
Impact
This study highlights the importance of making bladder and bowel health a routine part of MS care. Open conversations between people living with MS and their healthcare teams may help recognize symptoms earlier and connect people with support that can improve quality of life.
The findings also show that more research is needed to improve awareness, education and access to bladder and bowel care for people living with MS.
Read Bladder Problems in MS and Bowel Health for more information.
Reference: Van Valkenburgh L, Poinski-McCoy S, et al. Lived Experiences of Bladder and Bowel Dysfunction for People With Multiple Sclerosis and Their Providers: A Qualitative Meta-Synthesis. International Journal of MS Care. 2026.