Bladder health and lived experience in MS take centre stage at European Congress

The Multiple Sclerosis International Federation participated in the European Association of Urology (EAU) Congress 2026, one of the world’s leading urology meetings, where patient advocacy is playing an increasingly central role in improving care and outcomes.

During EAU Patient Day, MSIF contributed to the Patient Advocacy Poster Session, highlighting work led by patient organisations to strengthen awareness, support earlier diagnosis, and improve support for people affected by MS. MSIF collaborates with member organisations, healthcare professionals, and partners worldwide to ensure people with MS are better informed, supported, and empowered.

Lydia Makaroff presents a poster at the EAU Congress 2026.

As part of the scientific programme, Lydia Makaroff, Chief Executive of MSIF, delivered a presentation on “Bladder health and lived experience in multiple sclerosis outcome measurement”. Drawing on data from the Global Patient Reported Outcomes for MS (PROMS) initiative, she highlighted that bladder problems are among the most frequently reported issues by people with MS worldwide. The dataset includes responses from more than 5,000 people across 70 countries, with 69% reporting bladder-related challenges.

“The lived experience of people with MS sets out a clear message: bladder symptoms are common in MS, have a major impact on daily life, and remain under-recognised in clinical care and outcome measurement.”
Lydia Makaroff

A central focus of the presentation was the importance of patient-reported outcomes. The PROMS initiative, co-led by MSIF, the Italian MS Society, and the European Charcot Foundation, identifies outcomes that matter most to people living with MS and supports their integration into research and care. Incorporating lived experience into outcome measurement strengthens clinical conversations, enables earlier support, and supports fairer service design.

Bladder dysfunction affects confidence, independence, sleep, work, and social participation. Many people plan their day around access to toilets, avoid leaving home, or experience anxiety and fatigue linked to disrupted sleep. Despite this, symptoms are often invisible, inconsistently assessed, and not routinely discussed in consultations. People report needing to raise the issue themselves, with limited coordinated support across neurology, urology, and community services.

“I always need to know where the nearest bathroom is. It limits everything.”

“Doctors don’t ask me unless I bring it up.”

People living with MS

MSIF also attended in the session “BCLEAR: Shared Decisions, Stronger Care – Addressing Clinician Needs Across Europe”, which brought together clinicians, primary care representatives, and patient advocates. The discussion focused on strengthening shared decision-making across the care pathway. Clear communication, accessible information, and time to process complex information were identified as essential for enabling people to make informed decisions about their care.

A further session, “Living with urinary incontinence as a comorbidity: patient perspectives”, explored an often overlooked issue for people living with MS: urinary continence and its impact on everyday life. The discussion highlighted how continence issues can arise from the condition itself or as a consequence of treatment, and how they affect dignity, independence, and participation.

Speakers emphasised the persistent stigma surrounding urinary symptoms. Many people feel uncomfortable raising these concerns, leading to under-reporting and missed opportunities for support. This underlines the need for healthcare professionals to take a proactive and sensitive approach.

The session also marked the launch of the policy report “Coexisting Conditions: Urinary Incontinence as a Non-Communicable Disease Comorbidity”, developed as part of the Urge to Act initiative led by the European Association of Urology Policy Office. The report highlights that urinary incontinence rarely occurs in isolation and is closely linked with a range of conditions, including neurological disorders, cardiovascular disease, diabetes, mental health conditions, and cancer.

Across Europe, an estimated 55-60 million people live with continence health issues. Despite this, continence care remains under-recognised in healthcare systems and public policy. The report calls for a “continence health in all policies” approach, recognising its cross-cutting impact on long-term conditions and survivorship.

The findings also highlight challenges in neurological conditions, where continence issues are often under-reported due to stigma, lack of clear definitions, and limited assessment tools. These gaps affect both care planning and policy development.

MSIF’s participation at EAU26 reinforces the importance of integrating lived experience perspectives into clinical practice, research, and policy. Addressing urinary continence is essential to improving quality of life for people living with MS, and to ensuring that this aspect of care receives the attention it requires across health systems.