Living with MS means coping with a complex mix of symptoms that can affect both physical and emotional well-being. These include sensitive topics such as sexual health and bladder or bowel problems – issues that are not always discussed openly but are incredibly important for quality of life. Recent research and initiatives are shedding light on these areas and offering new insights and practical solutions for better care.
In this summary of topics presented at ECTRIMS 2024, I look at the results of five recent studies addressing
- sexual health in MS, highlighting its connection to mood, fatigue and overall quality of life;
- Bladder and bowel dysfunction, which is common but often overlooked, and how early treatment can make a big difference.
- Innovative approaches to care, including new training programs for healthcare professionals that aim to improve support for people with MS.
You’ll gain insights into how to address these challenges. Whether it’s talking to your doctor about symptoms, exploring new treatment options, or just knowing you’re not alone, this post is designed to empower and support you on your MS journey.
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Table of Contents
1. Sexual Dysfunction in Patients with Multiple Sclerosis in an Algeria Cohort
by Dr. Ali Khermache et. al
Living with MS often means dealing with a wide range of symptoms, from physical challenges to changes in sensation and mood. One area that can be particularly sensitive but is very important is sexual health. This study from Algeria set out to explore how common sexual dysfunction is among people with MS and to look at some of the other factors that may contribute, like anxiety and fatigue. This research provides helpful insights, especially if you’re experiencing any of these issues and wondering how common they might be or how best to address them.
What Was the Study About?
This study included 147 people with MS (101 women and 46 men) who were asked about different areas of their health, such as levels of depression, anxiety, fatigue, and sexual function. Using established questionnaires, the researchers aimed to find out how often sexual dysfunction occurs among people with MS and how it might relate to other common MS symptoms.
Key Findings: Sexual Health and MS Symptoms
- High Prevalence of Sexual Dysfunction: Many participants reported issues with sexual function, which is in line with other MS studies.
- Links to Other Symptoms: The study found that depression, anxiety, and fatigue were closely linked with sexual dysfunction. In other words, people who had higher levels of these symptoms were more likely to experience issues in their sexual health.
- Physical vs. Psychological Impact: While physical changes in MS can directly impact sexual health, this study also highlighted the importance of psychological factors like mood and mental well-being.
Why Is This Relevant?
Understanding how MS affects sexual health is crucial because it’s a topic that is sometimes overlooked. This study helps by showing that sexual dysfunction in MS is not unusual and is often linked to other common MS symptoms like depression and fatigue. By acknowledging these connections, healthcare providers can offer more holistic, supportive care that addresses both the physical and emotional aspects of MS.
How Reliable Is This Study?
In terms of reliability, this study used questionnaires and statistical tests to draw its conclusions, which provides a moderate level of evidence (in Cochrane levels, observational studies like this are valuable but not as definitive as randomized trials). However, the large sample size and thorough approach make the findings meaningful, especially for understanding common experiences among MS patients.
What Does This Mean for You?
If you’re dealing with sexual health concerns related to MS, this research is a reminder that you’re not alone, and these issues are common. Addressing factors like fatigue, anxiety, and depression may help improve sexual health as well. Bringing up these topics with your healthcare provider can open the door to treatments or lifestyle changes that could make a real difference.
Takeaway
Sexual health is an important part of quality of life, and while MS may bring challenges in this area, there are ways to manage and improve these symptoms. If you’re experiencing similar concerns, consider discussing them with your healthcare provider, who can help you explore options tailored to your needs. Remember, caring for your overall well-being—including mental health—can have positive effects across all areas of life, including intimacy.
2. The importance of investigating sexual and sphincter disorders in people with multiple sclerosis: evaluation of their association with clinical features and impact on quality of life.
by Chiara Redemagni et. al
The research focuses on how common sexual and sphincter (bladder and bowel) issues are for people with MS, and how these problems impact quality of life. Researchers looked at 286 people with MS (both men and women) and examined their experiences with sexual and sphincter function. They found that these issues are quite common even for those with low levels of disability, and both types of issues seem to strongly impact quality of life.
Key Takeaways:
- High Prevalence: Sexual and sphincter issues are widespread among people with MS, regardless of their level of physical disability.
- Quality of Life Impact: Both types of dysfunction significantly affect quality of life, making these areas important to address for overall well-being.
- Gender Differences & Higher Risk: There’s evidence that people with higher disability levels and women may experience these issues more often, although both men and women are affected.
- Complex Relationships: Researchers found connections between various measures, like physical and mental quality of life scores and specific sexual and sphincter function scores, suggesting these issues may stem from shared physical changes in the body due to MS.
Reliability of Findings
This study uses observational data and questionnaires, which are valuable but sit in the middle range of reliability on the Cochrane scale. While it’s not as definitive as a controlled clinical trial, it still offers meaningful insights that can help guide further research and support practical solutions.
What Does This Mean for You?
If you’re dealing with sexual or bladder/bowel issues, know that you’re not alone, and these symptoms are common in MS. Addressing them openly with your healthcare provider could lead to improvements in your quality of life. These findings underline the importance of recognizing and managing these issues, which may often go overlooked but are essential for maintaining both physical and emotional well-being.
3. An Absence of Pelvic Floor Physical Therapy Referrals in MS Patients Experiencing Bladder Dysfunction
by Assistant Professor Valerie Block et. al
Understanding Bladder Health in MS: Why It Matters and What You Can Do
Bladder issues are common for people with MS—up to 80% of MS patients report symptoms like urgency, frequency, or difficulty holding urine. These issues can impact your daily life, reducing your mobility, and adding to your overall disease burden. But there are treatments that can help manage these symptoms.
What Did This Study Look At?
This study explored how often bladder dysfunction was reported by patients with MS and how frequently it was treated. Interestingly, they found a big gap between the number of people reporting bladder issues and those receiving targeted therapies like PFPT (pelvic floor physical therapy). Despite its benefits, PFPT referrals were rarely documented in medical records, showing a potential area for improvement.
Key Findings
- Bladder Problems Are Under-Documented: While many patients reported issues, only a small percentage received specific treatments.
- PFPT Is Underutilized: PFPT is a non-invasive, effective treatment that’s backed by evidence, yet was rarely recommended.
- Age and Disability Matter: The study found that older patients and those with higher disability scores were more likely to report bladder dysfunction, highlighting the importance of personalized care.
Why This Is Important
For MS patients, addressing bladder health can improve quality of life significantly. While this study is observational (meaning it’s based on reviewing data rather than a controlled experiment), its findings point to a real gap in care that can be improved upon. In research terms, this type of study is at a moderate level of reliability, which means the findings are useful but more research could further strengthen the recommendations.
What You Can Do
If you’re experiencing bladder issues, talk to your healthcare provider about all your options, including PFPT. This approach could provide relief and help manage symptoms more effectively. Remember, you have options and advocating for treatments like PFPT can be a step toward improving your quality of life with MS.
4. Bladder and bowel problems significantly affect well-being in individuals with multiple sclerosis - a cross-sectional study
by Sabrina Islamoska et. al
Living with multiple sclerosis (MS) often comes with unique challenges, and bladder and bowel issues are common but often overlooked. These problems can significantly affect your quality of life if not properly managed. Thankfully, research is shedding light on how we can address these issues to improve well-being.
What Did the Study Look At?
This study surveyed 1,872 people with MS from several European countries. It aimed to understand how bladder and bowel problems impact well-being and how early management could make a difference. Participants answered questions about their bladder and bowel health and their overall quality of life, which was measured using a widely recognized tool called the WHO-5 Well-Being Index.
Key Findings
Bladder and Bowel Problems Are Common:
- 53% of participants reported bladder problems.
- 29% reported bowel issues.
- 24% experienced both.
Timing Matters:
- About 50% of those with bladder issues were diagnosed within the first year of experiencing symptoms.
- However, many lived with these problems for a long time before receiving the help they needed.
Impact on Well-Being:
- People with both bladder and bowel problems were over 3 times more likely to report lower well-being compared to those without these issues.
- Bladder problems alone increased the likelihood of lower well-being by 2.64 times.
What Does This Mean for You?
If you’re dealing with bladder or bowel problems, know that you’re not alone—and help is available. These issues are common in MS, but addressing them early can make a big difference in how you feel day to day. The study highlights the importance of bringing up these symptoms with your healthcare team so you can get the right support and treatment.
How Reliable Is This Study?
This was a cross-sectional study, which means it took a snapshot of people’s experiences at a single point in time. On the Cochrane evidence scale, this type of study provides moderate-level evidence—it’s not as definitive as a clinical trial but still offers valuable insights. The large number of participants and the use of a validated well-being index add credibility to the findings.
What Can You Do?
Talk to Your Doctor:
- Don’t hesitate to bring up bladder and bowel issues during your appointments. These are treatable, and early intervention can improve your quality of life.
Explore Management Options:
- There are many ways to manage these problems, from physical therapy and dietary changes to medications or assistive devices. Your healthcare provider can help you find what works best for you.
Focus on Well-Being:
- Taking control of bladder and bowel symptoms isn’t just about physical comfort—it’s about improving your overall sense of well-being and helping you live a fuller, more confident life.
Takeaway
This study shows that bladder and bowel issues are a significant but manageable part of MS. Addressing them early can help you feel more in control and improve your overall quality of life. Remember, your healthcare team is there to support you, so don’t hesitate to ask for help.
5. Creating high quality bite size training for Multiple sclerosis (MS) bladder and bowel. An international initiative to enhance awareness of bladder and bowel care in patients with MS
by Michelle Amanda Hogan-Tricks et. al
If you’ve ever felt that bladder or bowel issues in MS aren’t discussed enough or well-managed, you’re not alone. Many healthcare professionals (HCPs) feel unsure about how best to approach these topics, which can sometimes lead to gaps in care. The good news? A new international initiative is helping change that by providing specialized training for HCPs to improve their understanding and confidence in managing bladder and bowel problems in MS.
What Was This Project About?
The aim of this project was simple: to provide healthcare professionals with bite-sized, easy-to-access training that helps them better understand bladder and bowel care for people with MS. By improving their knowledge and confidence, they can provide better, more effective care to patients like you.
The training covered nine key topics, all broken down into short, 20-minute sessions that make learning quick and manageable. The sessions included topics like:
- Understanding MS and how it affects the bladder and bowel.
- The role of healthcare providers in managing these issues.
- Bladder and bowel care strategies for MS.
How Did It Work?
The project involved a global team of experts who collaborated to design the training, making sure it was easy to follow and relevant for healthcare providers. They used videos and interactive modules to explain complex topics in a straightforward way. The training also emphasized real-life scenarios, so HCPs could better understand the challenges MS patients face.
Healthcare professionals could select the topics most relevant to their role, complete the training online, and receive a certificate as proof of their learning.
What Were the Results?
The program launched in 2023 in the UK, France, Denmark, and the Netherlands. By September 2024:
- Over 211 HCPs had completed the training in France and Denmark.
- In the UK, more than 345 HCPs had completed the training.
Feedback has been overwhelmingly positive. Healthcare professionals reported feeling much more confident in discussing and managing bladder and bowel issues after completing the training. As one nurse put it, the training was “a real eye-opener” and “highly relevant for improving patient care.”
Why Is This Important for You?
Bladder and bowel issues are often difficult to talk about, but they are an essential part of managing MS and maintaining quality of life. This training equips healthcare professionals with the knowledge they need to provide better support. That means more open conversations and better-tailored care for you.
How Reliable Is This Project?
While this isn’t a clinical trial, the educational initiative is based on expert consensus and extensive collaboration with specialists in MS care. On the Cochrane scale, this would fall under expert opinion, which is still valuable but not as definitive as experimental studies. However, the practical feedback from HCPs shows it’s making a real difference in care.
Takeaway
This training program is a step forward in improving the care of MS-related bladder and bowel problems. By helping healthcare professionals become more knowledgeable and confident, it ensures you get the support you deserve. If you’re struggling with these issues, know that there’s growing awareness and tools available to make your journey smoother. Don’t hesitate to discuss these topics with your healthcare team—they’re ready to help!
Please don’t be shy. Talk about all your symptoms and get help. Your quality of life is at stake, and there are many options available, so there is likely to be support for your individual problem.
See you soon and try to make the best out of your life,
Nele
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