What you need to know about Fowler's Syndrome (FS)

It is a common misconception that bladder challenges only affect the elderly, but a rare condition known as Fowler's Syndrome can be a cause of bladder failure in young women. The condition affects around two per million women and can be life changing. The sudden inability to pass urine often comes without warning, with no known cause and can be a distressing and frightening experience.

What is Fowler's Syndrome?

The condition was first described by Dr Clare Fowler in 1985. It is a condition that makes passing urine difficult or complete bladder emptying impossible, leading to urinary retention. This is due to the nerves controlling the muscle at the bladder neck not working as they should. Instead of the muscles relaxing to allow the passing of urine they stay tightly closed.

What are the symptoms of Fowler's Syndrome?

The main symptom which would prompt someone to seek medical attention the sudden inability to pass urine. Other symptoms might be frequent urges to pass urine, and a growing discomfort or pain in the lower back, or low tummy region or frequent urinary tract infections.

Who does it affect?

Fowler's Syndrome only affects women, or those assigned/appearing female at birth, and is commonly found in those who are in their 20’s and 30’s and is sometimes called Chronic Idiopathic Urinary Retention (CIUR). It is important for young women who experience bladder symptoms to seek advice promptly and be referred to a urologist or specialist medical team.

How do you get Fowler's Syndrome?

At present there is no known cause of what causes the condition, research is continuing to determine a cause. It is known to develop after childbirth or surgical procedure, and half of sufferers also have polycystic ovary syndrome (PCOS)

What treatment is available?

Fowlers is a long-term condition and although there is currently no cure there are effective ways to manage it. Investigations to confirm a diagnosis are important in the first instance.

Initial treatment is to relieve the retention of urine, empty the bladder and relieve the pain. This may be firstly by an Indwelling Urinary Catheter; longer term management may be Intermittent Self Catheterisation (ISC) which will allow safe emptying of the bladder at regular intervals throughout the day. Some patients may opt for a Suprapubic Catheter or Sacral Nerve Stimulation (SNS). Options will depend on the individual and should be discussed with the specialist doctors or nurses.

Where do get additional support?

Being diagnosed with Fowlers Syndrome may be overwhelming both physically and emotionally, but support is available. Fowler's Syndrome UK (FSUK) www.fowlerssyndrome.co.uk is a charity offering advice and information and is an excellent resource for women and their support network.

You are not alone, support is available, and it is important to seek the right help.