My Neurogenic Bladder: Learning to live with what I can’t control

“The bladder is far too oversized; you will need to self-catheterize four to six times a day.” My new Obsetritian said gently as I tried to understand what was happening. This new information was presented to me months before I received an official diagnosis of a neurogenic bladder. “Will I be better soon? Maybe in a few months? A year? Can my bladder go back to normal size?” I asked, desperately searching for hope as I felt my eyes well up with hot tears. “No, unfortunately, this will be a life-long condition. The bladder won’t be able to shrink to a normal size.” Tears rushed down my cheeks as I let out a quiet sob; my new Obsetritian gently handed me some Kleenex to dry my tear-stained face. 

“There is a Urologist in Toronto who may be able to help by offering an implanted device that will send mild electric impulses to stimulate the nerves that control your bladder. Some patients have had success with this!” She said as she compassionately looked at my now bright red face. “Yes, I think I would,” I said sheepishly. When I got home from the medical appointment, I felt my lower abdomen swelling. Ah, the one indicator I had to tell me that my bladder was wildly full. “Self-catheterization is easy; it shouldn’t cause any pain.” The words rang in my head as I tried to place the catheter into my urethra and avoid the sheering pain that it caused. But once again, I was unsuccessful at preventing the agonizing hot knife feeling that shot through my urethra as I placed the catheter. I could only complete this by laying flat on my back. I couldn’t self-catheterize over the toilet like I had been advised to do.  

My Neurogenic Bladder: Getting a Diagnosis

I felt my abdomen decrease in size, and the stiff feeling in my lower abdomen disappeared. I looked down at the container I was using to catch the urine. “1,700cc,” I said to myself as I poured it into the toilet. Remembering every time that the average bladder should only hold 300-500cc, mine consistently went well over 1,000. How is one supposed to live a normal life when they have to do self-catheterization 4-6x a day… I wondered again and again. 

Many months before the official diagnosis of a neurogenic bladder, I made my way to see the well-known urologist, who I was assured could help me with this miracle-working nerve stimulator. There, I sat in his dingy, cold office as he asked me questions about my health. “How many times are you self-catheterizing a day?” He asked. “Between 4-6 times,” I answered, wondering why he couldn’t just look at the referral sent to him with notes about what was going on. “And how much urine do you catch when you do this?” “Anywhere from 800 – 1,800cc,” I answered. He looked at me in disbelief. “We have to do kidney function testing then. You should not retain that much urine; your kidneys are in jeopardy.” He said as he took more notes. 

“Why did this happen to me? How did I go from doing fine to having an oversized bladder following a hysterectomy?” I asked, desperate for answers. I didn’t get a response. Just a shoulder shrug. Why could no one give me answers? Why was this happening to my bladder? “Is there a way you could repair the bladder? And make it so it isn’t oversized?”

He just looked at me like I was another number that was asking too many questions. “There is no way to repair your bladder now that it is oversized. You will come here for testing to see if the Sacral Nerve Stimulation (SNS) will work for you. My office will contact you with a time for kidney function and nerve testing appointments.” He shut my file abruptly with a “case closed” motion. I walked out of that busy hospital feeling more overwhelmed than I had when I went in, wondering why. Why was my bladder failing me? What caused this nightmare? Why is there no way to repair my bladder? 

The Official Diagnosis: A Severe Underactive Neurogenic Bladder

Fast-forward four months, one severe abscess and infection in my urethra, a hospital stay for antibiotic treatment, living with a Foley catheter, being told I was no longer a candidate for the Sacral Nerve Stimulation, and wondering how I was going to move forward. I met with another urologist who finally told me what was going on. A neurogenic bladder which was caused by the hysterectomy. Something they don’t warn you about when they go over the “what ifs” list before any surgery. Yet, it can be a known complication of abdominal surgery. Why did it take multiple specialists, tests, obstetricians, and Urologists to finally be told what was wrong with me? 

No one deserves to suffer for over a year and a half following a hysterectomy or any other abdominal surgery. This sort of diagnosis could have been given so much earlier, and treatment could have been implemented to ensure the bladder didn’t become oversized and I didn’t end up with my kidneys suffering damage. Regardless of the countless questions, “Why did no one help me sooner?” That were circulating in my mind; I felt some kind of relief to have a Urologist explain a Neurogenic Bladder, pinpoint it to the hysterectomy and apologize for the neglect I experienced for far too long. 

I’d Never Heard of a Neurogenic Bladder

A Neurogenic Bladder was a term I had never heard in my life. Yet, it’s a condition that affects millions of people worldwide. This condition is typically associated with medical conditions like Spina bifida, Multiple sclerosis, Parkinsonism, stroke, spinal cord injuries, and a small percentage of abdominal surgeries. So, why would those undergoing abdominal surgeries not be better warned about this serious complication? Why are more surgeons and obstetricians who do abdominal surgeries like Hysterectomies not actively looking for the apparent signs following surgery? Like when I was utterly ignored following my hysterectomy when I was unable to feel the sensation that I needed to pee, and when I was unable to fully empty my bladder when I would sit on the toilet in pain for what felt like hours. 

What is a Neurogenic Bladder? 

A Neurogenic Bladder is a condition that happens when the nerves that control the bladder are damaged or not functioning properly. Because of this, it disrupts the way the brain, spinal cord and bladder communicate, which leads to problems with storing and releasing urine. 

For me, knowledge is everything. When I developed Severe Preeclampsia during my final pregnancy, I was overwhelmed by being unable to understand what was happening to my body. When you get a diagnosis, they often use these medical terms without going in-depth into what it is and why it’s happening. So, if you’ve recently received a diagnosis like “Neurogenic Bladder,” here’s some information to help you understand.

How the Bladder is Supposed to Work: 

A healthy bladder works through a very complex system of nerve signals between your brain, spinal cord and the bladder muscles. It’s supposed to operate like this: 

1. Filling Phase: The bladder slowly fills with urine, and the nerves signal the brain that it’s getting full. 
2. Holding Phase: The bladder muscles stay relaxed while the sphincter muscles that control urine flow stay closed. 
3. Emptying Phase: When you use the toilet to empty the bladder, the brain will signal to the bladder muscles that they need to contract and push urine out while the sphincter muscles relax. 

What Happens With a Neurogenic Bladder: 

When your nerve signals that control the bladder are disrupted due to injury, disease or sugery, it can cause: 

• An Overactive Bladder (Spastic Bladder): With an overactive bladder, the bladder contracts too often, which leads to frequent urination, urgency and sometimes incontinence (bladder leakage).  
• Underactive Bladder (Flaccid Bladder): The bladder muscles can’t contract properly, making it difficult to urinate, leading to urine retention (holding in too much urine). 
• Mixed Dysfunction: Some people end up experiencing both overactive and underactive bladder symptoms at different times. 

Common Symptoms of a Neurogenic Bladder: 

• Frequent urination (more than 8 times a day). 
• Urgent need to urinate but difficulty emptying the bladder. 
• Incontinence (leaking urine). 
• Urinary Retention (not being able to fully empty the bladder). 
• Not feeling the sensation that your bladder is full and you need to empty it. 
• Recurring urinary tract infections (UTIs) due to retained urine. 

What Causes a Neurogenic Bladder? 

• Neurological Diseases: Conditions like Multiple Sclerosis (MS) cause 40-90% of patients to experience a Neurogenic Bladder, while 37-72% of patients with Parkinsonism are affected by a Neurogenic Bladder, and  61% of young adults with spina bifida experience urinary incontinence. Additionally, some people who experience long-term diabetes develop nerve damage (diabetic neuropathy), which also affects bladder function.
• Spinal Cord Injuries: Damage to the spinal cord from accidents, falls, or medical conditions can cut off communication with the bladder muscles. 
• Pelvic Surgeries (Including Hysterectomy): Surgery on the pelvic area, such as a hysterectomy (removal of the uterus), can sometimes damage the nerves that control the bladder, leading to neurogenic bladder. 

What are the Treatment Options for a Neurogenic Bladder? 

As with many other conditions, the treatment for a Neurogenic Bladder depends on the severity of symptoms you are experiencing, as well as the type of dysfunction (overactive or underactive bladder) and the underlying cause. The goal is to improve function, prevent infections and maintain kidney health. 

Treatment For an Overactive Neurogenic Bladder (Spastic or Hyperreflexic Bladder)

This type of Neurogenic Bladder Means Your bladder contracts far too often and too strongly, which leads to urgency, frequency and incontinence. 

Treatment for Moderate Cases: 

For this type of Neurogenic Bladder, lifestyle and behavioural therapies can help and include: 

• Bladder Training (scheduled peeing) 
• Pelvic Floor Therapy (Kegal exercises) 
• Avoiding Caffeine, alcohol, and spicy foods 

Some Medications Can Help Mild to Moderate Cases of Neurogenic Bladder,  Such As: 

• Anticholinergics (Oxybutynin, Toyterodine, Solifenacin): These all aim to relax the bladder muscles which should help to reduce urgency. 
• Beta-3 Agonists (Merabergron, Vibegron): These can help increase bladder capacity and reduce sudden urges. 

Treatment for Severe Cases of Overactive Neurogenic Bladder: 

• Botox Injections: These can be injected into the bladder muscle to reduce overactivity. The effects of these injections usually last about six months. 
• Sacral Nerve Stimulation (SNS): As I talked about earlier in this blog, SNS is a small device that can be implanted near the sacral nerve to regulate bladder contractions. 
• There are also some surgery options available for severe cases of overactive neurogenic bladder. 

Treatment for an Underactive Neurogenic Bladder (Flaccid or Areflexic Bladder): 

This type of Neurogenic bladder happens when the bladder doesn’t contract properly, which leads to urine retention, difficulty urinating and an increased risk of infections. This is the type of Neurogenic Bladder that I have following the Hysterectomy.

Ways to Treat a Mild to Moderate Cases of an Underactive Neurogenic Bladder: 

• Lifestyle and Behavioral Therapies:
  • Double voiding (this is when you try to urinate again after your first attempt): I attempted this, but my bladder was too far gone. However, some people have great success with this if their Neurogenic Bladder is in the mild to moderate case. 
  • Increased hydration to prevent infections, think: “Flushing your bladder out.” 
• Medications:
  • Cholinergic Agents (Bethanechol): This helps stimulate bladder contractions in some cases. 
  • Alpha Blockers (Tamulosin, Doxazosin): These can help with relaxing the bladder neck and improve urine flow. 

Treatment for Severe Cases of Underactive Neurogenic Bladder: 

Catheterization Methods for Severe Cases of Underactive Neurogenic Bladder:

• Intermittent Self-Catheterization (CIC): You can use a sterile catheter multiple times a day to empty the bladder. This was the first line of treatment that they tried for me when my bladder was too far gone. 
• Indwelling Foley Catheter: A tube that remains in the bladder through the Urethra to continuously drain urine. I had to have a Foley Catheter for four months, and it really did come with some major issues like bleeding, irritation, and pain. 
• Suprapubic catheter (SPC): This is a surgically placed catheter that is inserted through the lower abdomen to drain urine directly from the bladder, bypassing the urethra. This is often the preferred option for long-term management of a Severe Underactive Neurogenic Bladder. As someone who has had Intermittent Self-Catheterization, the Indwelling Foley Catheter, and now the Suprapubic Catheter,  I would say they all come with their positives and negatives. Each person will tolerate different methods because every body and urinary system is unique. 

Surgical Treatments for Severe Cases of Underactive Bladder: 

• Urinary Diversion (Ileal Conduit or Urostomy): If the bladder is not able to function (like mine), urine is diverted to a stoma in the abdomen. This is a risky surgery, but after recovery, many patients report having a better quality of life. 
• Bladder Augmentation (Cystoplasty): If the bladder doesn’t appear to have the ability to contract, a section of the intestine may be added to increase volume and reduce retention. 
• Artificial Urinary Sphincter (AUS): This is a surgically implanted device that allows control over urine release. 

Each surgery comes with its own set of risks. The simple fact that I had a hysterectomy to reduce symptoms of Endometriosis and get me on track for living a life without pain, but it turned out to be the surgery that utterly destroyed my health, makes me very hesitant to jump into another surgical option. My thinking is: If I was a part of the small percentage of people that end up with a Severe Neurogenic Bladder, what could happen if they did an extreme surgery like one of these? 

Ultimately, It’s Your Body. Therefore, you should choose the treatment option that is BEST for You.

Throughout this painful process, I’ve learned that I have a right to seek the treatment option that is best for me. Many medical professionals aren’t even clear about what a neurogenic bladder is. Therefore, doing my research and not being afraid to ask medical professionals who are experts on this condition is essential to my well-being. I can’t go back in time and say no to the Hysterectomy or demand help sooner. But I can learn about this condition that I can’t control. The more knowledge I gain about what I’m experiencing, the more I can take control of my health and my life. 

Disclaimer: I am not a medical professional. This blog is based on my personal experiences living with a severe case of underactive neurogenic bladder, including my journey with Foley catheterization, self-catheterization, and a suprapubic catheter. Every individual’s condition is unique, and what worked for me may not be suitable for others.

If you are experiencing bladder issues, difficulty urinating, chronic infections, or symptoms following abdominal surgery (including hysterectomy), please consult your healthcare provider as soon as possible. Prompt medical attention can help prevent complications and ensure you receive the right treatment for your condition.