What is Fowler’s Syndrome?
This February, we want to help raise awareness of a little known debilitating chronic condition called Fowler’s Syndrome. Fowler’s Syndrome tends to affect women in their 20s and 30s and results in the failure to empty the bladder and causes extremely painful bladder symptoms and bladder retention.
Fowler’s Syndrome is a relatively ‘new’ illness first described by Professor Clare J Fowler who has spent many years researching and treating young women experiencing urinary issues. Fowler’s Syndrome is caused by an abnormality in the urethral sphincter where it’s unable to relax to allow urine to pass through. This can cause a range of symptoms from a poor urine flow all the way up to complete urinary retention which requires catheterisation or a urostomy. It can also affect the sensation in the bladder with an inability to feel when the bladder starts to feel full until it’s at a capacity where the bladder is overstretched and can cause extreme pain, bladder spasms, burning sensation and can be the cause of recurrent UTIs and kidney infections. In many women, Fowler’s Syndrome can be caused spontaneously by a gynaecological procedure or childbirth, however there is no known exact cause for this condition.
How is Fowler’s Syndrome diagnosed?
One of the most common tests to check for Fowler’s Syndrome is a Urodynamics, which involves one catheter inserted into the bladder and another catheter inserted into the back passage. The bladder is then filled with water slowly and will be monitored to check for any irregular spasms. Once the bladder is filled, you will then be able to ask to pass the urine and they will record the flow and pressure inside the bladder.
Other specialised tests can include a Sphincter Electromyogram. This can only be done by certain trained experts and is usually used if other tests point towards Fowler’s Syndrome. It involves passing a small needle into the urethral sphincter and electromagnetic waves pass through and records the sounds that typify Fowler’s Syndrome.
How is Fowler’s Syndrome treated?
Fowler’s Syndrome is a chronic condition and there is currently no known cure, instead treatment mainly involves making sure that the bladder is able to remain empty to avoid the associated pain and spasms.
Catheterisation is a common way to manage the condition and depending on the severity, this may be intermittent self catheterisation, a technique when you insert a catheter into the urethra several times a day to drain the bladder, or it maybe a more permanent option such a s a suprapubic catheter which is a tube inserted through the belly into the bladder and urine is allowed to drain freely into a catheter bag.
Sacral Nerve Stimulation is a new treatment where an electromagnetic device is inserted near to the spine and this device sends pulses along the nerves that control the bladder. The aim is to stimulate the nerves to improve bladder sensation.
In more extreme circumstance, surgery may be offered to create a urinary diversion such as a urostomy, where a piece of the small bowel is used to create a stoma that is connected directly to the ureters and then drains directly into a urostomy bag which is attached to the stomach.
What do I do if I think I’m experiencing symptoms of Fowler’s Syndrome?
If you speak that you are experiencing any painful bladder symptoms but are still able to pass urine then the first thing to do would be to visit your GP who can refer you to a Urologist for further tests. If you are in extreme pain and unable to pass urine then it’s important to attend your nearest A&E.
Where can I find more information on Fowler’s Syndrome?
You can find further information through the UCL website
Bladder Health UK also has some great information.
B is for Bladder is a great resource if you want to find out more about what living with Fowler’s Syndrome is like. Aoife Madden was diagnosed with Fowler’s in her 20s and blogs her experiences.