A day in the life: neurogenic urinary retention

As Angelique approached 20, the pelvic pain and gastrointestinal issues that had been part of her life for as long as she could remember became unbearable and eventually led to a diagnosis of neurogenic urinary retention.

Dear Diary

Name: Angelique
Occupation: Health, Safety, Environment and Quality (HSEQ) and Human Resources for the civil construction industry
Condition: Neurogenic urinary retention and gastroparesis
Symptoms: Persistent fatigue, altered pain and sensation, pelvic pain, nausea, bloating, abdominal discomfort, and difficulty maintaining consistent nutrition
Treatment: Sacral nerve stimulation (SNS)

Getting help

I was just 20 years old when my symptoms really began to escalate, although I’ve had pelvic pain and gastrointestinal (digestion) issues for as long as I can remember. What started as something I could push through gradually became harder to ignore, until it progressed to severe urinary retention (unable to empty the bladder).

As things worsened, I required urgent medical attention and was referred for specialist investigations. This eventually led to a diagnosis of neurogenic urinary retention, a condition where the bladder is unable to empty properly because of nervous system dysfunction.

Because my bladder had completely stopped emptying and I had no bladder sensation, catheterisation (emptying your bladder via a tube into your urethra) became necessary very quickly. I initially required an indwelling catheter, which stays in place to drain urine from the bladder.

I later transitioned to intermittent self-catheterisation, which involves inserting and then removing a catheter several times a day to empty the bladder. There wasn’t really an opportunity to trial more conservative treatment options beforehand because of how severe the urinary retention was.

Further investigations

Since receiving the neurogenic urinary retention diagnosis, I have also been diagnosed with gastroparesis, which affects stomach motility (speed at which food moves through the stomach) and causes symptoms such as nausea, feeling full after eating a very small amount of food (early satiety), bloating, abdominal discomfort, and difficulty maintaining consistent nutrition and energy levels.

Together, these symptoms have had a broader impact on my daily functioning, including concentration, stamina, and emotional wellbeing. Managing a condition that affects multiple body systems has required ongoing adjustment, careful pacing, and a strong focus on self-management and medical follow-up.

In addition to bladder dysfunction, I experience a range of symptoms that appear to be neurological and autonomic in nature (automatically controlled by the brain such as heart rate and digestion). These include persistent fatigue, altered pain and sensation and pelvic pain.

There is now growing suspicion that there may be a broader neurological or autonomic condition linking these symptoms together, rather than them being isolated single-organ issues. I’m still having tests and investigations to see if one condition could explain all these symptoms.

My care team

My care has involved a multidisciplinary team including my GP, urologist, gynaecologist, internal medicine specialist, pelvic physiotherapist, continence specialists and nursing staff.

Having a team-based approach has been incredibly important, particularly while navigating diagnosis, symptom management and eventually progressing to sacral nerve stimulation (SNS).

This treatment involves an implantable device that delivers mild electrical impulses to the sacral nerves, which are a group of nerves near the base of your spine that help control your bladder and bowel. The aim is to improve communication between the brain and the bladder when that signalling has been disrupted. For me, it represented a turning point after conservative management options were no longer suitable due to the severity of my condition.

Life before sacral nerve stimulation (SNS)

Before progressing to SNS, a large part of my life revolved around managing symptoms and planning around my bladder. Because I had no bladder sensation and was unable to empty my bladder independently, even simple activities required preparation. Leaving the house meant making sure I had catheters and supplies with me, knowing where bathrooms were located, and constantly thinking ahead about how long I could comfortably be away from home.

At 20 years old, losing that level of independence was incredibly difficult emotionally. I was trying to continue working, exercising and maintaining a normal social life while also navigating hospital admissions, specialist appointments and ongoing investigations. A lot of people only saw the version of me that kept showing up to work or the gym, but behind the scenes there was a huge amount of physical and mental exhaustion involved in maintaining that normality.

By the time SNS was discussed, I felt like I had reached a point where I needed to seriously consider anything that could improve my quality of life.

At the same time, the decision was confronting because it involved surgery and the idea of living with an implanted medical device long-term.

Preparing for the procedure also involved practical adjustments, including taking time away from work, limiting physical activity during recovery and mentally preparing for the possibility that results might not be immediate or guaranteed.

Life after sacral nerve stimulation (SNS)

Despite that uncertainty, SNS ultimately became a major turning point. I’ve regained a significant amount of independence and confidence, and my quality of life has greatly improved.

Things that were previously difficult, like working full days, exercising without interruption, travelling, and even leaving the house without extensive planning have become far more manageable.

The biggest change has probably been the mental relief. Not constantly worrying about bladder management has been just as life changing as the physical improvements,” Angelique told Bridge.

Also in this edition

• Carer of the Year
• Mad about materials
• Finding a group to support you
• What is neurogenic urinary retention?
• Looking after your bowels in hospital
• Disabilities: talking to your GP about incontinence
• Is health advice from TikTok or ChatGPT better?
• Alcohol and incontinence – what’s the connection?