Coping with Urinary Incontinence

Neurogenic Bladder

Urinary incontinence is a medical condition characterized by the involuntary loss of urine. While we refer to incontinence as a symptom, it may be considered “secondary to superficial siderosis” because it results from the damage or dysfunction the deposition of iron causes. It can develop in various forms, ranging from a slight leakage to a complete inability to control urination. While this condition can affect individuals of all ages and backgrounds, its occurrence in connection with superficial siderosis (SS) presents unique challenges and considerations.

 Emotional Impact

The experience of urinary incontinence, particularly in the context of SS, can have a profound emotional impact. For younger patients, who may already be grappling with the complexities of a rare diagnosis, the added burden of incontinence can exacerbate feelings of embarrassment, frustration, and isolation. The social stigma often associated with incontinence can further compound these emotions, making open communication and support even more vital.

 Purpose of the Guide

The purpose of this guide is threefold. First, it aims to provide a clear and comprehensive understanding of urinary incontinence within the framework of superficial siderosis. By demystifying the medical jargon and explaining the underlying mechanisms, this guide seeks to empower patients and caregivers with knowledge. Second, this guide acknowledges the emotional toll urinary incontinence can take on patients. It offers empathy and validation, recognizing that the physical symptoms are just one part of a multifaceted experience. Finally, this guide is committed to providing practical solutions and support. Through medical insights, product recommendations, and emotional support strategies, it aspires to equip individuals and their families with the tools to navigate this challenging aspect of living with SS.

Why Urinary Incontinence Occurs in SS

The brain and spinal cord work in harmony to regulate the muscles that control the bladder. In SS, the hemosiderin deposits can interfere with this delicate balance, damaging the nerves that send signals to the bladder. This disruption can lead to losing control over the muscles that retain or release urine, resulting in incontinence.

Types of Incontinence

In the context of SS, urinary incontinence can manifest in several ways, reflecting different underlying issues:

  • Stress Incontinence occurs when physical pressure on the bladder leads to involuntary leakage. In SS, weakened pelvic muscles may contribute to this type of incontinence.
  • Urge Incontinence: Characterized by a sudden and intense urge to urinate, followed by an involuntary loss of urine. This may be linked to nerve damage in SS, affecting the signals between the brain and bladder.
  • Overflow Incontinence occurs when the bladder doesn’t empty, leading to constant dribbling. This may be related to impaired signals from the brain to the bladder muscles in SS.
  • Functional Incontinence: Physical or mental obstacles sometimes prevent timely toilet access. In SS, mobility challenges or cognitive impairments may contribute to this form of incontinence.
  • Mixed Incontinence: A combination of the above types, reflecting the multifaceted nature of SS and its impact on different bodily functions.

Importance of Evaluation and Diagnosis

Understanding and managing urinary incontinence in SS requires a thorough medical evaluation and diagnosis. This process is essential for several reasons:

  • Identifying the Type: Different types of incontinence require different treatments. Proper diagnosis helps in tailoring a personalized treatment plan.
  • Uncovering Underlying Causes: In SS, incontinence may be a sign of progressing neurological damage. Early detection can guide
  • interventions to slow or manage this progression.
  • Emotional Support: A precise diagnosis can alleviate anxiety and uncertainty, providing a foundation for coping strategies and support.
  • A comprehensive evaluation may include a detailed medical history, physical examination, bladder diary, and specialized tests such as urodynamic studies. Collaboration between neurologists, urologists, and other healthcare providers ensures a holistic approach to care.

Practical Advice

 Medical Treatments

Overview of Medical Interventions, Medications, and Therapies

Medical treatments for urinary incontinence in SS may include prescription medications that control bladder muscles, Botox injections to calm overactive muscles, or surgical interventions for severe cases. Physical therapy may also be employed to strengthen the muscles that control urination.

Importance of Consulting with Healthcare Providers

Working closely with healthcare providers who understand SS and urinary incontinence is crucial. They can tailor treatments to individual needs, monitor progress, and make necessary adjustments.

Potential Side Effects and Considerations

Treatments may have side effects, such as dry mouth from certain medications or potential complications from surgery. Understanding these risks and discussing them with healthcare providers is essential.

 Lifestyle Changes

Diet and Fluid Management

Diet and fluid management are vital in controlling urinary incontinence, particularly in SS. The relationship between what we consume and how our bladder behaves is complex, and understanding this connection can lead to significant improvements in managing incontinence.

Managing Fluid Intake

Hydration is essential for overall health, but finding the right balance in fluid intake becomes crucial for those dealing with urinary incontinence. Drinking too little can lead to concentrated urine, which may irritate the bladder and increase the urgency to urinate. Conversely, excessive fluid intake might lead to more frequent urination. A personalized approach, considering factors like body weight, activity level, and specific symptoms, can help determine the optimal fluid intake. Monitoring and adjusting fluid intake throughout the day, avoiding large quantities at once, and reducing intake in the evening can minimize nighttime urination. Water is usually the best choice, as it’s less likely to irritate the bladder. However, individual tolerance to different beverages may vary, and keeping a bladder diary to track fluid intake and corresponding symptoms can provide valuable insights.

 Avoiding Bladder Irritants

Certain substances are known to irritate the bladder, exacerbating incontinence symptoms. Caffeine is a common culprit in coffee, tea, soft drinks, and even chocolate. It has a diuretic effect, increasing urine production and potentially triggering urgency. Alcohol is another substance that can irritate the bladder, as it has diuretic properties. Acidic foods and beverages, spicy foods, and artificial sweeteners may also contribute to bladder irritation in some individuals. Identifying and avoiding these irritants requires awareness and sometimes trial and error. Working with healthcare providers, such as dietitians specializing in urinary health, can provide personalized guidance.

 A Balanced Diet to Prevent Constipation

Constipation can indirectly affect urinary incontinence by putting pressure on the bladder. A fiber-rich diet, including whole grains, fruits, vegetables, and legumes, promotes regular bowel movements and alleviates constipation. Avoiding processed and fatty foods, which can contribute to constipation, and incorporating healthy fats, lean proteins, and probiotics can further support digestive health.

Bladder Training Techniques

Bladder training is a therapeutic approach designed to help individuals regain control over their bladder function, particularly in cases of urinary incontinence. This method involves a systematic and disciplined practice of scheduled urination and a gradual increase in the time intervals between bathroom visits. The ultimate goal is to retrain the bladder muscles, enhancing capacity and control.

 Scheduled Urination

The process begins with establishing a fixed schedule for urination. Initially, this might be as frequent as every hour or two, depending on the individual’s current symptoms and bladder capacity. The key is to adhere to this schedule rigorously, regardless of whether there is an urge to urinate. By doing so, the bladder adapts to a predictable pattern, reducing unexpected cravings and accidental leakage.

Gradually Increasing Time Intervals

Once the initial schedule is comfortably maintained, the next step is gradually extending the time between bathroom visits. This extension might be as small as 15 minutes at a time, slowly working up to a more typical interval of 3 to 4 hours. This gradual increase challenges the bladder to hold more urine for extended periods, strengthening the muscles and increasing capacity.

Retraining the Bladder Muscles

The underlying principle of bladder training is the reeducation of the bladder muscles and the neural pathways that control them. The bladder muscles learn to contract and relax more controlled and coordinated by consistently following the schedule and gradually increasing the intervals. This retraining helps reduce sudden, intense urges that characterize urge incontinence and improves overall bladder function.

Support and Monitoring

Bladder training is not a quick fix but requires patience, persistence, and often professional guidance. Working with healthcare providers such as urologists or physical therapists specializing in pelvic health can provide personalized support and monitoring. Keeping a bladder diary and tracking successes and challenges can be a valuable tool in this process.

Pelvic Floor Exercises and Physical Therapy

Exercises like Kegels strengthen the pelvic floor muscles, enhancing control over urination. Physical therapists specializing in pelvic health can guide these exercises.

While these websites provide valuable information and guidance, individual needs and conditions may vary. Consulting with a healthcare provider, such as a physical therapist specializing in pelvic health, can ensure that Kegel exercises are performed correctly and effectively for your situation.

Product Recommendations

 Incontinence Pads and Underwear

Specialized products designed to absorb leakage, providing comfort and discretion.

  • Depends: Depends offers a wide range of incontinence underwear and pads for both men and women, designed for maximum absorbency and a comfortable fit.
  • Always Discreet: Always Discreet provides incontinence pads and underwear specifically for women, focusing on thin, flexible designs that offer protection and discretion.
  • TENA: TENA specializes in incontinence care products for both genders, with various options ranging from light pads to protective underwear, emphasizing skin health and comfort.

Bed Protection Products

Waterproof mattress covers and bed pads can protect bedding and ease nighttime concerns.

  • SafeRest: SafeRest offers premium waterproof mattress protectors that are hypoallergenic and designed to protect against fluids, allergens, and dust mites.
  • Platinum Care Pads: Platinum Care Pads provide reusable and washable bed pads that absorb liquids and dry the sleeping surface.
  • Luna: Luna’s mattress protectors are known for their waterproof capabilities, breathability, and noiseless fabric, ensuring a comfortable and protected sleep.

 Portable Urinals and Other Assistive Devices

For mobility challenges, portable urinals and other devices can provide convenience and dignity.

  • Carex: Carex offers a range of portable urinals for men and women, designed for leak-proof use, easy cleaning, and travel convenience.
  • Spill-Proof Urinal: The Spill-Proof Urinal brand provides urinals with a unique spill-proof design, ensuring confidence and ease of use, especially for those with limited mobility.
  • Drive Medical: Drive Medical offers various assistive devices, including portable urinals and bedside commodes, focusing on quality, functionality, and support for individuals with mobility challenges.

These brands represent a range of options within each category, catering to different needs, preferences, and budgets. Consulting with healthcare providers or specialists in incontinence care can further guide product selection based on individual requirements.

Emotional Support Strategies

 Coping Mechanisms for Embarrassment and Anxiety

Living with urinary incontinence, particularly in the context of Superficial Siderosis (SS), can lead to feelings of embarrassment and anxiety. Developing coping mechanisms to manage these emotions is essential for overall well-being.

  • Mindfulness: Practicing mindfulness involves staying present and fully engaging with the current moment. Deep breathing and meditation can help individuals connect with their bodies and emotions, reducing anxiety.
  • Positive Self-Talk: Replacing negative thoughts with positive affirmations can shift focus from embarrassment to empowerment. Encouraging self-compassion and recognizing personal strength can build resilience.
  • Focusing on Accomplishments: Celebrating progress, no matter how small, can boost confidence and motivation. Acknowledging achievements in managing symptoms or reaching personal goals can provide a sense of control and accomplishment.

Building a Support System

Having a robust support system is vital for emotional support and encouragement.

  • Family and Friends: Open communication with loved ones about the challenges and needs related to incontinence can foster understanding and empathy. Encouraging family participation in therapy or support groups can enhance this connection.
  • Support Groups: Joining support groups, both in-person and online, can provide a community of individuals who share similar experiences. These groups offer a safe space to share feelings, ask questions, and receive encouragement.
  • Peer Mentoring: Connecting with others who have successfully managed similar challenges can provide inspiration and practical advice.

 Professional Counseling and Therapy Options

Professional counseling and therapy can offer personalized strategies tailored to individual needs.

  • Therapists Specializing in Chronic Illnesses: Finding therapists with expertise in chronic illnesses like SS can provide targeted support. They understand the unique emotional challenges and can offer strategies to manage anxiety, depression, and other mental health concerns.
  • How to Find Specialized Therapists: Many organizations and online platforms focus on chronic illness support. Websites like Psychology Today or the American Psychological Association offer searchable directories to find therapists with specific expertise. Additionally, healthcare providers, support groups, or local mental health organizations may have recommendations.
  • Group Therapy: Participating in therapy groups focusing on chronic illness can provide a sense of community and shared understanding. Group therapy offers a platform to learn from others and develop coping skills in a supportive environment.


Urinary incontinence, particularly in the context of Superficial Siderosis (SS), is a complex and multifaceted challenge that affects many aspects of an individual’s life. This guide has sought to provide a comprehensive understanding of the condition, exploring the underlying causes, various manifestations, and the unique connection between SS and urinary incontinence.

We delved into practical advice, covering medical treatments, lifestyle changes, product recommendations, and emotional support strategies. From understanding the importance of medical evaluation and diagnosis to exploring coping mechanisms for embarrassment and anxiety, we aim to equip you with the tools and knowledge to navigate this journey confidently.

Remember, you are not alone in this. Your strength, resilience, and courage are commendable, and resources, support groups, and professionals are ready to assist you. Embrace the support of family and friends, and don’t hesitate to contact healthcare providers and organizations specializing in SS and urinary incontinence.

We hope this guide has been a valuable resource for you, and we encourage you to reach out with any further questions or support needs. Your well-being is our priority, and we are here to assist you in any way we can. Whether you are an individual living with these challenges or a caregiver supporting a loved one, know that understanding, compassion, and practical solutions are within reach.

 Resources for Further Support

List of Organizations and Support

These organizations offer various resources, from educational materials and self-help tools to support groups and professional connections. They can be valuable assets for individuals, caregivers, and healthcare providers dealing with urinary incontinence.

Show More

Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Back to top button