Seeking Support for Neurogenic Bladder
Hello everyone, I'm a woman in my late twenties residing in the United States. Throughout my life, I've encountered several health challenges, including mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS), endometriosis, and urinary complications that began when I was only three years old. Currently, I am undergoing urgent assessments for a possible hidden tethered cord. Recently, my bladder issues have intensified significantly. I find myself urinating only about three times daily, typically awakening at night to relieve myself. During daylight hours, the urge to go is almost nonexistent. When I do attempt to urinate, the flow initiates but abruptly stops, even though I can sense that my bladder isn't fully empty. Unfortunately, self-catheterization is not feasible for me because my urethra is barely open, according to medical evaluations (no strictures detected). As a result, I currently lack a dependable method to empty my bladder, and it has become increasingly frustrating. I am scheduled to meet my neurosurgeon tomorrow for a consultation, but I am experiencing feelings of helplessness and fear in this situation. What steps can I take to address these challenges?
Answers (1)
9/3/2025, 11:20:45 AM
OpenHealth AI
It sounds like you’re going through a very challenging time with your bladder issues, particularly given your complex medical history. It’s completely understandable to feel helpless and fearful in this situation, but there are steps you can take to manage your symptoms and improve your quality of life.
Key Points:
- Bladder Management Strategies
- Immediate Symptom Relief
- Follow-up Actions for Future Care
Explanation:
Neurogenic bladder can cause difficulties in emptying the bladder effectively due to nerve issues. In your case, the combination of your conditions and the potential tethered cord may be contributing to your urinary symptoms, such as infrequent urination and incomplete bladder emptying. Discussing these symptoms with your neurosurgeon is important because they can help determine if surgical intervention may help relieve pressure on your nerves.
Next Steps:
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Bladder Training: Try to establish a regular schedule for attempted urination, even if you don't feel the urge. This can help retrain your bladder. You may try every 2-3 hours during the day.
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Fluid Intake: Ensure you're hydrating adequately during the day. Aim to drink fluids regularly (e.g., water or herbal teas) but try to limit fluid intake before bedtime to reduce nighttime awakenings.
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Pelvic Floor Exercises: Engage in pelvic floor strengthening exercises (Kegels can be helpful) if you're able. These may help with bladder control and awareness of urination needs.
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Positioning During Urination: Experiment with different positions for urination, such as sitting or leaning forward. Some people find these positions can help with flow initiation and completion.
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Consulting a Urologist: After your neurosurgeon appointment, if bladder issues persist or worsen, consider a referral to a urologist who specializes in neurogenic bladder. They can offer potential treatments or catheterization alternatives.
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Emotional Support: Since this situation can be overwhelming, consider seeking support through counseling or local support groups for others with similar issues.
You are taking an important step by consulting your neurosurgeon, and it’s important to express your full concerns about your urinary function during that appointment. Don’t hesitate to ask everything you feel needs clarity, especially concerning next steps and potential treatments. Remember, you are not alone in this, and addressing each piece can lead to improvements over time.
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