What is Fowler’s Syndrome?
Fowler’s Syndrome was first described by Professor Clare Fowler in 1985. The condition causes full or partial urinary retention and solely affects women*. The peak age of onset is 26.
The difficulty in passing urine lies in the urethral sphincter (the muscle that keeps you continent). The problem is caused by the sphincter’s failure to relax to allow urine to be passed normally.
Scientific Definition of Fowler’s Syndrome
A condition of chronic urinary retention affecting women, in the absence of urological, gynaecological and neurological causes, and characterised by idiopathic dysfunction of the external urinary sphincter demonstrated by at least one of the following:
- Elevated urethral pressure profile
- Abnormal findings in urethral sphincter electromyography including decelerating bursts
- Evidence for bladder outflow obstruction on video urodynamics testing
- Increased sphincteric volume on imaging
Lay Definition
Fowler’s Syndrome and idiopathic chronic urinary retention are conditions in which women have problems passing urine, due to difficulty relaxing the urinary sphincter and coordinating urination. While these conditions themselves are painless, it can result in the need for a catheter and urinary infections, which can cause pain. It is frequently associated with polycystic ovary disease, endometriosis, opiate administration and other conditions. To confirm the condition and rule out other causes, sufferers are likely to require investigations such as urodynamics, urethral pressure profiling, and EMG studies.
*Women or those born AFAB
About FSUK
Fowler’s Syndrome UK is a registered charity (1196903) that works to raise awareness, promote education and increase research into Fowler’s Syndrome, with the aim of reducing diagnosis time and improving care. As the first charity in the world to exclusively support those with Fowler’s Syndrome or CUIR, FSUK intends to provide resources and support to the Fowler’s Syndrome community.
Currently resources for women with Fowler’s Syndrome are scarce, with the majority of specialists based in limited centres, where there is a significant wait for referral.
FSUK intends to change this landscape, working together with the top urologists, neurologists and other healthcare professionals in the country, as well as with patient experts, our Fowler’s Foxes.
Mission
Fowler’s Syndrome UK’s mission is to ensure women with Fowler’s are diagnosed, treated and cared for in a timely, holistic and multi-faceted approach, across the entirety of the UK.
Vision
Our vision is to change the clinical landscape for women with Fowler’s syndrome
Meet the team
Meet FSUK's ambassador, Elle
Elle is a content creator based in London, and she is living with Fowler’s Syndrome. Elle went into retention in October 2020 and had sacral neuromodulation in January 2023.
You can follow her story on Instagram @ellenextdoor
“Hello, Elle here. Firstly I wanted to say a huge thank you for all of your lovely comments after I was announced as a @fowlerssyndrome ambassador. Thank you for embracing me to represent us Fowlers Foxes 💚
I went into retention in October 2020. I went straight to A&E where an indwelling catheter was inserted and a litre of urine was drained off. I remember so vividly the doctor saying “we can remove the catheter and see if you can go, which we don’t think you’ll be able to. Or you can go home with it in and go to outpatients urology in a couple of weeks”.
It was in the middle of the pandemic and I was all alone, so I did what I always do when I’m scared and unsure of what to do, I called my Mum and asked her what to do…
Read more of Elle's Story
Symptoms
The typical woman who is seen with the condition is in her 20-30s and may infrequently pass urine with an intermittent stream. The normal sensation of urinary urgency expected with a full bladder are not present but as the bladder reaches capacity there may be pain and discomfort, and she finds that she is not able to pass urine. This can happen spontaneously or following an operative procedure (gynaecological, urological or even ENT) or following childbirth.
Symptoms of Fowler’s Syndrome
Inability to urinate
Fowler’s Syndrome may present itself as either full or partial inability to void, or frequent urination with an inability to fully void. Some patients may have to strain to urinate or take a long time to void. Bladder spasms may also be an issue.
Inability to feel the bladder is full
Fowler’s can cause loss of sensation, leading to difficulty in knowing when the bladder is full. This means that some Fowler’s patients are at risk of loss of bladder control, in addition to retention.
Pain
Stomach, bladder and pelvic pain are common side effects of Fowler’s Syndrome. Pain may increase with specific movements and activities. Sexual intercourse can be painful and problematic. Frequent bladder and urinary infections exacerbate and contribute to pain levels.
Infection
Failure to completely empty the bladder puts Fowler’s patients at greater risk of infection. Frequent urinary infections may be a problem for women suffering from Fowlers Syndrome due to the bladder not emptying properly. Some women may also experience back, kidney and suprapubic pain, together with fevers, or blood in the urine. Women with Fowler’s Syndrome are at an increased risk of sepsis due to the infections they suffer. They are also at risk of developing antibiotic resistance due to the frequency with which they need antibiotics.
What usually happens after a woman has first developed Fowler’s Syndrome symptoms?
Classically, the woman presents to the hospital as they have been unable to pass urine for many hours and a catheter (tube that drains the bladder) is inserted, and often over a litre is drained with consequent relief of the pain.
Initial hospital management is carried out by the urology team at the local hospital but if the symptoms do not resolve, the patient maybe referred on.
Causes
Diagnosis
The key diagnostic test for the condition is a Sphincter Electromyogram (EMG). However, this is somewhat uncomfortable since a needle must be used to record from the sphincter and needs specialist expertise and equipment. Other tests that may be carried out which indicate the diagnosis is likely include flow rate, residual volume, urethral pressure profile and ultrasound sphincter volume. These tests depend on whether you pass urine.
Is there a cure?
Treatments
Fowler’s Syndrome is a condition which is slowly being understood. There is no absolute cure for the condition yet. The aim of treatment is to try and ensure bladder emptying.
Bladder function may spontaneously recover in some patients, especially in the group in whom the problems started after childbirth.
In patients with little recovery, it can be a lifelong condition which can cause significant impact to quality of life.
At the National Hospital, we have a specialist team of doctors, nurses and continence advisors to help manage your condition long term. There are various treatments that are used to regain control and overcome the symptoms.
Currently, the treatments for Fowler’s syndrome are being researched and developed. Depending on the severity of the condition, there are various but limited options.
Often patients have a poor urine stream but can still void almost normally. In these patients, we monitor their residual volume. If they are low, no intervention is necessary.
Some patients have a large residual volume which gives rise to urinary infections and a large bladder. These patients are helped by regular clean intermittent catheterisation (putting a sterile catheter into the bladder at regular intervals to empty the bladder).
The most severe patients, those in complete retention may be candidates for sacral nerve stimulation, which is the only treatment shown to restore voiding. However, this requires major efforts by the patient, is expensive, often troubled by operative difficulties and cannot be regarded as a “good fix”.