Only 30% of GPs know about Fowler’s syndrome: here’s what it is and how to recognise it

Dani Coombe

Founder & CEO, Fowler’s Syndrome UK

Fowler’s syndrome is a life-changing and currently almost untreatable bladder condition that causes partial or full urinary retention. It solely affects women and is stigmatised, under-researched and under-funded.

When I stopped being able to pass urine, it took 18 months to get a diagnosis. I was in so much pain that I thought my life was over. I was eventually diagnosed in 2016 with Fowler’s syndrome, a poorly understood bladder condition affecting up to 20,000 women in the UK.

Stigmatised Fowler’s syndrome ruining women’s lives

Women with Fowler’s syndrome have a dysfunction of the muscles that let urine out of the bladder. As a result, many use a permanent or intermittent bladder catheter or have surgery to be able to pass urine.

Fowler’s syndrome is commonly associated with pain, and 85% say their life has been severely affected. Standard camera tests, scans and other tests are usually normal. However, there is a lack of research and resources.

A survey of over 250 women with Fowler’s
syndrome found that most had experienced
stigma in relation to their condition.

An estimated 75% are told it’s a result of anxiety

I was lucky in terms of my treatment for Fowler’s because the average wait between first symptoms and diagnosis is four years. A survey of over 250 women with Fowler’s syndrome found that most had experienced stigma in relation to their condition. For instance, Elle Adams, Fowler’s Syndrome UK’s ambassador, was told that she was ‘just an anxious young girl’ by a urologist before her diagnosis.

Changing the clinical landscape

Now, I am on a mission to change things for women with Fowler’s. In 2021, I started the first and only charity for the condition, Fowler’s Syndrome UK (FSUK), which has the support of a multidisciplinary medical board. FSUK has obtained funding to set up a patient helpline and run national support groups, but much more is needed.

The lifetime cost to the NHS of Fowler’s syndrome is over a quarter of a million pounds per person. We badly need more research to find out why women lose their ability to use their bladders and to develop better treatments.