What you need to know about Fowler's Syndrome

Fowler's Syndrome is a condition that primarily affects young women in their 20s and 30s and it's life-changing at a point women should be embracing life to the fullest. Sadly, only around 30% of GPs know what Fowler's Syndrome is, making it difficult to get a diagnosis while experiencing life-changing symptoms.

What is Fowler's Syndrome?

Fowler's Syndrome is a condition characterised by urinary retention, where we struggle to empty our bladders fully or at all. It's named after Professor Clare Fowler, who first described it in 1985. The condition typically affects women in their 20s and 30s, with the average age of onset being 26

At the heart of Fowler's Syndrome lies a problem with our urethral sphincter - the muscle responsible for keeping us continent. In this condition, the sphincter fails to relax properly, making it difficult or impossible to pass urine normally

Symptoms and Diagnosis

The symptoms of Fowler's Syndrome can vary from person to person. Some of us might experience complete urinary retention, while others may partially empty our bladders but still retain a significant amount of urine

Common signs include:

1. Difficulty or inability to pass urine

2. Reduced sensation of bladder fullness

3. Large bladder capacity

4. Back pain or pain over the bladder

5. Discomfort or burning while passing urine

Diagnosing Fowler's Syndrome can be challenging, as it's a relatively rare condition and many GPs aren't aware of it. Doctors may use various tests, including urodynamic studies and electromyography of the urethral sphincter, to confirm the diagnosis.

Treatment Options

While there's currently no cure for Fowler's Syndrome, several treatment options can help manage the condition:

Sacral Nerve Stimulation (SNS)

This is currently the most effective treatment for Fowler's Syndrome. SNS involves implanting a device that sends mild electrical pulses to the sacral nerves, helping to restore normal bladder function

Intermittent Catheterisation

For those of us with less severe symptoms, using a catheter at regular intervals to empty the bladder can be an effective management strategy.

Botulinum Toxin Injections

Recent studies have shown promising results with high-dose onabotulinumtoxinA injections into the urethral sphincter. This treatment can improve urinary flow and reduce symptoms for some of us.

Living with Fowler's Syndrome

Adapting to life with Fowler's Syndrome can be challenging, but it's important to remember that we're not alone.

Here are some ways to cope if you are newly diagnosed:

Find support

Talking about our experiences with family, friends, or support groups can be incredibly helpful. The Bladder & Bowel Community Support Group is an excellent resource for connecting with others who understand what we're going through.

Maintain your mental wellbeing

Living with a chronic condition can take a toll on our mental health. It's okay to not be okay sometimes. Developing coping strategies and seeking professional help when needed can make a significant difference.

For more information on Fowler's Syndrome, go to https://fowlerssyndrome.co.uk/