Rapid Deterioration of Neurogenic Bladder in Late 20s – Urethra Nearly Obstructed
Hello everyone, I’m a woman in my late twenties from the USA, and I'm currently at a standstill with my bladder complications. To provide a bit of background, I am dealing with multiple health challenges: Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome, chronic migraines, Spondylolisthesis, neurogenic bladder, and there’s a suspicion of an occult tethered cord (OTC). My urinary issues have persisted since I was just three years old. However, all structural assessments have come back normal—there are no strictures, stones, or other anatomical blockages. My urologist has attributed my condition to neurogenic bladder and is quite concerned that OTC might be contributing to my symptoms. Currently, I am facing some pressing issues: - I am struggling to urinate, managing only a few drops at a time. - My urethra is so constricted that it is nearly impossible to visualize or insert a catheter without significant discomfort, and not due to any strictures. - The pain from retention is becoming increasingly unbearable. - Although my urologist advised me to visit the emergency room, I’m left wondering what they could do if even catheter insertion proves difficult. I have a forthcoming appointment with a spine surgeon (I met with a neurosurgeon last week), yet I can't shake the feeling that my condition is worsening. The prospect of the ER feels futile, but the pain from retention is severe, and I worry about my bladder's ability to cope with this situation. What should I do in the interim? I am feeling frightened and utterly drained. Any guidance or shared experiences would be immensely appreciated.
Answers (1)
9/10/2025, 11:40:54 AM
OpenHealth AI
I'm truly sorry to hear about the challenges you're facing. Your concerns regarding bladder function and pain are valid, and it's understandable to feel frightened and drained given your situation. Let’s break down what you can do next in this difficult time.
Main Points:
- Immediate Management of Urinary Retention: Focus on relieving retention and managing discomfort.
- Monitor Symptoms Closely: Keep track of changes to inform your healthcare team.
- Prepare for Upcoming Appointments: Gather information that may be helpful for your specialists.
Explanation:
With your history of neurogenic bladder and the complications you’re experiencing, it’s critical to address the immediate issue of urinary retention. The pain and difficulty with urination suggest that you may need further intervention, as this could lead to more severe complications. While your appointments with specialists are on the horizon, addressing your discomfort in the meantime is a priority.
Next Steps:
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Use Warm Compresses: Applying a warm compress to your lower abdomen may help to relax the area and provide some relief from the discomfort of retention.
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Hydration: Ensure you continue to drink water, as staying hydrated is essential to maintain urinary function even if urination is difficult.
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Attempt Gentle Self-Catheterization: If you have been taught how to self-catheterize, you may try doing so very gently. If it is too painful, it’s better to stop. Avoid any forceful attempts that could cause further irritation.
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Pain Management: Over-the-counter pain relievers (if you can take them and they are not contraindicated for your other conditions) can help manage your discomfort. Always ensure they are safe considering your existing health issues.
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Document Symptoms: Keep a detailed record of your urinary patterns, the severity of your pain, and any other symptoms. This can be very helpful for your upcoming consultations.
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Emergency Room Consideration: If your pain escalates, or if you become unable to urinate completely and start experiencing fever, chills, or severe abdominal pain, going to the emergency room may be necessary despite your concerns. They might be able to provide interventions like catheterization or pain relief that could help while you await further specialist care.
Emphasize Your Concerns in Appointments:
When you meet with your spine surgeon, be sure to express your current challenges with urinary retention and pain. They may have new insights or interventions that could help alleviate your symptoms.
Remember, you are not alone in this, and it’s important to continue advocating for your health. If you need any more support or tips along the way, please ask. Take care, and I hope for a solution that brings you relief soon.
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