When we think about bladder health and urological conditions, the most common things that come to mind are things like UTI’s or incontinence. But there’s a much rarer condition that affects women (or those afab) – one that is often misunderstood, misdiagnosed, and far too frequently completely overlooked – Fowler’s Syndrome. Despite being something that is fairly unknown, Fowler’s can have a huge impact on quality of life, leading to physical pain, emotional distress and isolation. 

What is Fowler’s Syndrome? 

Fowler’s Syndrome is a urological condition that is characterised by the inability to pass urine normally. This is because the urethral sphincter (the muscle that controls the release of urine from the bladder) doesn’t relax like it should. It is a condition that mainly affects young women – especially those in their 20’s and 30’s. The exact cause is still unknown as well, and this only adds to the complexity and challenges of diagnosing and treating the condition. 

The main symptom is urinary retention – the inability to empty the bladder properly. This is a spectrum with some people having mild difficulty in emptying their bladder, to other’s who are completely unable to empty their bladder without medical intervention. Many who have the condition will have to use a catheter to empty their bladder – either one that is permanently in situ, or by using intermittent catheter’s. Speaking from experience, both of these can be physically uncomfortable (and at times painful) and emotionally distressing. 

Other symptoms can include: 

• Chronic pelvic pain  

• Recurrent UTI infections (the incomplete emptying of the bladder, or the presence of a catheter, leads to a higher risk of infections) 

• Lack of feeling in the bladder (I personally have next to no bladder sensation, even when I am totally at capacity) 

• Difficulty starting to urinate (even when the urge is strong)  

• A weak or slow urine stream 

Diagnosing Fowler’s Syndrome is challenging. Because it is so rare, many healthcare professionals are not familiar with it and this can lead to misdiagnosis or delayed diagnosis. Women with the condition undergo multiple tests, including urodynamic testing which assess how well the bladder and urethra are functioning. One of the key symptoms (that is diagnosed by EMG – the gold standard test) is abnormally high urethral sphincter pressure, which prevents normal bladder function. 

Living with Fowler’s Syndrome 

Living with Fowler’s is not just a physical challenge, but an emotional one too. The daily discomfort and pain, needing a catheter, and frequent hospital and doctors appointments have a huge impact on mental health. Many women diagnosed with Fowler’s struggle with anxiety and depression as they navigate a condition that is not well understood, even by medical professionals (the consultant I was under after my diagnosis had never heard of Fowler’s and I was the first patient in the hospital to be experiencing the condition – it’s kind of scary looking back!) 

There is also the challenge of explaining what Fowler’s Syndrome is to others. Because of its rarity, many friends, family, and doctors may not grasp what the person is going through. Those with the condition often have to become their own advocates, pushing for proper diagnosis and treatment options. I’m so fortunate to have the most amazing, understanding friends and family around me – I wouldn’t have gotten through the last 5 years without them in my corner. 

Treatment Options 

There is no cure for Fowler’s, but there are treatments that can help people manage the symptoms. The most common one is using a catheter to empty the bladder. As previously mentioned, this can either be through a catheter that is permanently in situ, or one that is used intermittently.  

Another option is sacral neuromodulation – this involves implanting a device to stimulate the nerves controlling the bladder. This has shown promise in reducing symptoms for some, but it’s not suitable and does come with risks. It is thought to be less effective for those who are in complete urine retention. 

Medications that relax the urethral sphincter or address underlying issues like chronic pain or mental health struggles may also be part of the treatment plan. However, because the symptoms are so individualistic and complex, finding the right combination of medications can take a lot of time. 

Finally, there are surgical options but these are both huge undertakings. A mitrofanoff is a catheterisable channel that is on the patient’s abdomen that they then pass a catheter through to empty the bladder (or neo-bladder if one is created). A urostomy is where the urinary tract is diverted completely so urine drains from the kidneys to a stoma bag. 

Why awareness matters 

Fowler’s is rare, but for those affected it is a life-changing condition that definitely deserves more attention. Increased awareness can lead to earlier diagnosis, better treatment options and more research into potential treatment options and underlying causes. 

Women with Fowler’s need to know they are not alone. They deserve understanding, support, and compassionate care. And I won’t shut up until everyone affected feels understood and supported through their journey. 

All my love,

Anna x