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Symptoms of Fowler’s Syndrome

Many of the symptoms of Fowler’s Syndrome are caused by an inability to empty the urine that is stored in the bladder.

The severity of symptoms varies from person to person. Some women experience complete retention. Others experience partial urination with a residual amount of urine left in the bladder.

Some women may experience back pain, suprapubic pain (pain over the bladder) or dysuria (discomfort/burning whilst passing urine) due the urinary infections that retention can cause.

The most common signs and symptoms in people with Fowler’s Syndrome are below. These features may differ from person to person and the list does not yet include every symptom or feature that has been described in this condition.


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.


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.


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 of Fowler’s Syndrome

The cause of Fowler’s Syndrome is not known and is still the subject of research.
A poorly relaxing or spasming sphincter (the band of muscle that is found at the exit of the bladder) is thought to cause increased urethral activity. This in turn inhibits the bladder leading to poor bladder sensation and detrusor underactivity. What causes this muscle to spasm is unknown.Fowler’s Syndrome is seen more frequently in women who have had a surgical procedure, childbirth, opiate exposure or a sudden medical condition, such as an infection or illness.
A high proportion of patients also have polycystic ovaries, endometriosis, or other gynaecological conditions, potentially suggesting an as-yet undiscovered hormonal cause for the condition.


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 always 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.

The exact number of people with Fowler’s Syndrome is unknown.  One study estimated that Fowler’s Syndrome is the cause of the inability to empty the bladder in about 0.3% of cases.

In another study the incidence quoted is 0.2 per 100,000 – equivalent to 2 in a million women.

Assuming that the UK population is about 70 million, this approximates to 70 new diagnoses per year in the UK. If we also assume that the typical patient has the condition from age 20 to 80, there could be potentially 8400 people with the condition at any one time in the UK



Fowler’s Syndrome is difficult to diagnose, but many women with Fowler’s Syndrome have abnormal electrical activity on a specialised test called concentric needle electromyography. (EMG)

This abnormal form of electrical activity signifies Fowler’s Syndrome. This is the ‘Gold standard’ in Fowler’s diagnostic testing.

It is somewhat uncomfortable since a needle must be used to record from the sphincter and the test requires specialist expertise and equipment. Other tests that may be carried out which indicate the diagnosis is likely include flow rate, residual volume bladder scanning, urethral pressure profile and ultrasound sphincter volume. These tests depend on whether you pass urine.

Diagnostic Tests


Sphincter Electromyogram (EMG). This is the gold standard test for Fowler’s Syndrome, With the patient lying on their back, local anaesthetic is injected into the sphincter region. A small needle is then used to take recordings from the sphincter. The area from which the needle takes the recording is very small (1mm³). It is sometimes quite a complex and tricky test.

Characteristic waveforms and sounds can be identified using this technique. The abnormality in Fowler’s Syndrome is a complex repetitive discharge and decelerating bursts, but to the non-specialist, it is the sound of ‘helicopters’ and ‘whales’.

This test is uncomfortable and carried out only in a few centres worldwide since it requires a special interest in urology and neurophysiology.

Ultrasound Sphincter Volume Measurement

The volume of the urethral sphincter is measured using ultrasound. A small probe is placed in the vagina, and the sphincter is identified. Measurements are taken and the volume calculated. It can be a little uncomfortable on insertion of the probe, but once the sphincter is found, most patients do not find it too bothersome. An overactive sphincter may enlarge due to continuous ‘muscle activity’.

Urethral pressure profile

Whilst you lie on your back, a catheter is inserted into the urethra and saline is infused slowly through the catheter. The catheter is then withdrawn and re-inserted into the bladder six times, whilst the pressure of the urethral sphincter is measured. This test gives information on how much pressure is generated by the sphincter, and thus how overactive the muscle is.


This test, sometimes also called “cytometry”, is more useful if you cannot pass urine and involves placing two small catheters (tubes), one in the bladder and one in the rectum (back passage). The bladder is slowly filled with saline (salt water) and is monitored for any irregular spasms. Once the bladder is full, you are asked to pass urine with the catheters in. This gives information on what pressure the bladder muscle generates for a particular urine flow rate.
This test takes 30-40 minutes and may cause discomfort on insertion of the catheters. Once the catheters are inserted, it is less uncomfortable.

Flow Rate

If you can pass urine, you sit on special lavatory that measures the speed of your stream and how long it takes you to pass urine. The computer measures the flow rate of urine. It then draws a graph. We can use this to see if your stream is interrupted and the severity. The test is easy to perform and is totally non-invasive.


Treatments for Fowler’s Syndrome are being researched and developed.

There are several different treatment options, though some have limited results and may not be suitable for all patients.

Often patients have a poor urine stream but can still void almost normally. In these patients, your urology department will monitor your residual volume. If these volumes are low, no intervention is necessary.

Those in complete retention may be candidates for sacral nerve stimulation, which is the only treatment shown to restore voiding. This procedure requires major efforts by the patient, is expensive, often troubled by operative difficulties and cannot be regarded as a “good fix”.

The patients with the most severe symptoms sometimes benefit from either the removal of the bladder and creation of a stoma or the use of the appendix to create an alternative route for emptying the bladder.

Botox is currently being investigated as a treatment option.

Treatment Options


Some patients have a large residual volume which gives rise to urinary infections and a large bladder. These patients can sometimes be helped by regular clean intermittent catheterisation. 

Intermittent self-catheterisation (ISC) is the process where a patient inserts a small, thin catheter up through their urethra and into their bladder to drain the bladder of urine. Some patients may need to do this every time they need to empty their bladder and others will be encouraged to just perform ISC before going to bed to ensure their bladder is fully emptied. 

Once the bladder is empty, the catheter is removed and safely disposed of. Each time you need to empty your bladder, you will use a new, sterile catheter. 

A member of the urology team at your hospital will teach you how to self-catheterise safely and will be able to support any questions or complications you may have. Most people get used to self-catheterising relatively quickly, however there are some tips that can help those who continue to struggle with it, such as:

  • Lying down and collecting the urine in a container 
  • Putting your foot up on the edge of the bath or on the toilet seat
  • Bending your knees/squatting

It important to note than a significant proportion of women with Fowler’s Syndrome may have difficulty with catheterization, and may better tolerate a silicone catheter

Urethral Dilation

Urethral dilation is a procedure where the urethra is gently stretched by using either a rubber or metal tube. An abnormal narrowing of the urethra (also known as a stricture) can cause poor urine flow or the struggle to fully empty the bladder. Although urethral dilation can help patients with Fowler’s Syndrome, they usually require other forms of treatment either alongside this procedure, or following the procedure if the benefits of having it done did not last very long.


(Also known as sacral nerve stimulation – SNS)

Often referred to as a ‘bladder pacemaker’, sacral neuromodulation is an implanted system (or medical device) that can improve bladder function by sending electrical signals to the sacral nerves that control your bladder. The device is inserted into the lower part of your spine/back and is made up of a wire and a battery.
Sacral neuromodulation takes part in two stages:

The first stage involves a temporary wire being placed around the sacral nerve in the lower back (around the tailbone) with an external battery worn on a belt. The trial is around 4-6 weeks (varies by hospital) and if this is deemed successful stage two can be performed.

Stage two involves the wire and battery being implanted under the skin and depending on the type of implant used, can last anywhere between 3-15 years before needing to be replaced.


A suprapubic catheter (SPC) is a catheter inserted into the bladder via the lower abdomen. These catheters are held in place with a balloon (the same as a urethral catheter) and can usually be changed every 12 weeks. Some patients require their SPC to be changed more frequently, but this will be decided by your urologist. Catheter changes are usually uncomfortable but are over very quickly and therefore most patients can tolerate the changes being done awake, without the use of pain medication. In rare cases, these catheter changes may need to be performed with the use of stronger pain medications or under sedation or general anesthetic. The catheters can either be connected to a urine drainage bag worn on the leg, around the abdomen or can be connected to a bigger ‘night bag’. Patients can also use a flip-flo valve that is connected to the end of the catheter. When the valve is opened, the urine can be drained into the toilet and therefore there is no need to be connected to a urine bag throughout the day.


A mitrofanoff procedure is a form of urinary diversion. The purpose of the mitrofanoff procedure is to form a man-made channel between the bladder and abdominal wall to allow intermittent self-catheterisation to take place, to drain the bladder, through the abdomen instead of urethrally. Often, a mitrofanoff channel is created using the appendix, but when this is not possible part of the small bowel, large bowel or fallopian tube can be used instead.

One end of the channel is tunneled into the wall of the bladder to create a valve that acts as a continent mechanism and the other end is passed through the abdominal wall to create a small stoma where the catheters can be passed to empty the bladder. It is recommended that a patient with a mitrofanoff channel empties their bladder at least 4-6 times a day.
The mitrofanoff can be situated either in the belly button (umbilicus) or on the right hand side of the lower abdomen.
People often opt for the mitrofanoff procedure as there is no need to have a catheter permanently in place or to be attached to a urine drainage bag, although at times this may be recommended.


A urostomy is a type of stoma and another form of urinary diversion. A small section of bowel is used to form the conduit (new exit or route) and the remaining bowel is reconnected for its normal function. Your kidneys produce urine, which travels down the ureters. The ureters are stitched into the conduit. One end of the conduit is closed and the open end is brought out onto the abdominal wall to form the stoma. During the urostomy procedure, stents will be placed into the kidneys via the ureters to assist free drainage of urine until the healing process has taken place. The stents can either fall out, or will be removed approximately 10 days after surgery if needed. Patients with a urostomy stoma will need to use and regularly change bags to collect the urine in. This can be emptied throughout the day into a toilet.

Bladder Botox

Botulinum toxin, or Botox, has been used for many years in patients with overactive bladders and other medical conditions. Recently, it has been investigated in small numbers of Fowler’s Syndrome patients and shown to improve bladder emptying and reduce bothersome symptoms. The Botox is injected directly into the sphincter with local anesthetic and can be done in clinic, or can be done in hospital under general anesthetic. Further research is required, and as Botox wears off after 3-9 months, repeat treatments are likely to be necessary.

Co-existing conditions

Ehlers Danlos Syndrome (EDS)

In a study of women with Ehlers Danlos urinary complications were the most frequently reported symptoms. Specific complications included stress, urge, nocturnal urinary incontinence (UI), recurrent urinary tract infections (UTIs), bladder outlet obstruction, bladder pain, dysuria, haematuria, urinary retention, and voiding dysfunction.

Pain as a primary complaint of those with Ehlers Danlos was reported. Vulvodynia, vestibulodynia, dyspareunia, and generalised pelvic pain were also reported. A study of 386 women with hEDS found that over 60% reported dyspareunia.

The study said

“The urogenital system and pelvic region contain many collagen-rich tissues including the bladder, uterus, and pelvic ligaments, increasing the concern for related complications in those with EDS. While there has been some recognition of this clinically, particularly in the field of obstetrics, little information is available on the prevalence, types, or outcomes associated with the urogenital complications of EDS more broadly.

Problems with the genital mucosa were also reported, including vaginal dryness, spontaneous genital skin fissures, genital edema, genital lacerations and bleeding after intercourse, perineal tearing during medical treatment, and recurrent vaginal infections. Berglund and Björck found in a sample of 250 women with EDS, 67% reported genital mucosal problems, while Sorokin et al reported 25% of women with EDS had vaginal dryness and 8.5% had post-coital bleeding. In two case reports, such bleeding required emergency medical care.”

Fowler’s and PCOS

Studies have maintained that up to 50% of women with Fowler’s Syndrome also have Polycystic Ovarian Syndrome.

In a 2015 study researchers found that there was a higher incidence of endometriosis, PCOS and subfertility versus the general population for Fowler’s Syndrome. The incidence of menstrual abnormalities and ovarian cysts was similar in both groups.