Breaking the silence on bladder and sexual dysfunction 

When I was a fellow, still navigating the complexities of multiple sclerosis and learning how to best care for those affected by it, I met Emily, a patient who had been living with MS for a decade. During a routine “Review of Systems,” I delved into areas often overlooked, asking about her bladder and sexual health. Emily paused, then quietly admitted, “No one has ever really asked me about that.” Her response stunned me. 10 years into her diagnosis, these critical aspects of life had remained unexplored in her conversations with healthcare professionals. 

As we continued, I asked more directly, “Have you been having accidents?”  

Emily said she wore incontinence pads daily. “I wasn’t sure if this was related to my MS or just because I’m a 42-year-old woman,” she said. Reflecting on her words, I realized how isolated and alone she must have felt, managing this “secret” without support, and unsure if it was even connected to her neurological condition. 

This experience underscored a crucial lesson for me early on: as clinicians, we’re not just dealing with the pathophysiology of the disease; we’re caring for individuals whose symptoms affect every aspect of their lives. Addressing sensitive issues like bladder and sexual dysfunction isn’t just about symptom collection; it’s about connecting on a human level and demonstrating to our patients that their overall well-being genuinely matters. 

Despite the frequent occurrence of bladder and sexual symptoms in many neurological disorders, these issues often go unaddressed, hidden in silence stemming from embarrassment or the mistaken belief that they lie outside the scope of neurology.  This reflects a broader need for neurologists to foster an environment where intimate concerns can be discussed openly and without judgment. By engaging in these conversations, we demonstrate to our patients that their overall well-being is of paramount importance to us. 

So, why aren’t these conversations happening during our regular assessments?  Often, it’s because we’re unsure how to begin, fear making our patients uncomfortable, or simply don’t have the time. However, we cannot afford to shy away from these topics—they’re too essential to our patients’ quality of life. They depend on us to lead these conversations, and it’s our responsibility to ensure they feel seen, heard and cared for in all aspects of their health. Here are a few practical tips: 

1. Initiate conversations early.

Make it a routine practice to address potential impacts on bladder and sexual function early in the disease process, once the diagnosis is established, to foster open and ongoing communication.

2. Normalize sensitive topics.

Use language normalizing these symptoms reinforces that they’re common and medically relevant. Explicitly mention symptoms like incontinence and erectile dysfunction, explaining to patients that these are common issues that can be managed medically.

3. Educate and reassure.

Equip yourself with knowledge about these often-ignored complications of diseases like MS and share this with your patients. Let them know that their experiences are valid and manageable.

4. Encourage ongoing dialogue.

Make it clear to your patients that their journey is a shared one; regular check-ins on sensitive health topics can foster a supportive environment.

5. Document thoroughly. 

Ensure all discussions are documented in detail, which can help in tracking symptoms over time and making informed treatment decisions. 

Our work as healthcare professionals extends beyond choosing the most appropriate disease-modifying therapy. It includes acknowledging and addressing the silent burdens our patients carry. By fostering a culture of open communication about these sensitive topics, we can transform the patient experience, providing not just medical care but also much-needed compassion and understanding. Let’s focus on more than just managing the disease; let’s support the whole person living with it. 

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.