Most of us, use the restroom is an effortless way, there is an urge to pee and so it is an easy, unconscious act. For 27-year-old Anna Gray from Bath, England, such a simple function was an impossible task—a task that defined her life for six long years! Diagnosed with Fowler's Syndrome, a rare and painful urinary disorder, Anna has spent more than a half-dozen years having to use catheters just to empty her bladder.Anna's health emergency started in November 2018 when she was hospitalized with a severe kidney infection—brought on by not being able to urinate for several days. Physicians initially thought it was an isolated incident. But when her bladder had to be drained of almost two liters of urine and the issue continued, it was evident this was no typical infection.Just weeks after that, another hospitalization uncovered something disturbing: Anna's bladder was not functioning at all. After invasive procedures, the reason still eluded her. Specialists eventually diagnosed her with Fowler's Syndrome—a condition so uncommon, even seasoned urologists had encountered only a handful of cases."I was informed there was nothing further that could be done," Anna remembered in an interview. "I couldn't comprehend how it could occur to me."By 2020, after years of repeated infections and hospital stays, Anna was fitted with a suprapubic catheter—a tube inserted through her belly directly into her bladder. The catheter empties urine into a collection bag, which she has to empty several times a day."Coming to terms with this being my life now was really hard," she said. "There were mental health issues. I was in the hospital last year for depression."In January 2024, Anna developed sepsis around her catheter site—a life-threatening complication that led to three weeks in intensive care. Yet despite the setbacks, she refuses to hide her condition.“I wear shorts, tops—you can see the bag. It doesn’t bother me. People ask questions, and I’m fine with that.”Because of the paucity of her condition, Anna first felt extremely isolated. "I felt like I was the only person in the world experiencing this," she said. But that ended when she learned about online support groups for Fowler's Syndrome patients."Meeting others who understood was life-altering. I finally didn't feel alone," said Anna.Community support has become a lifeline for so many with chronic illnesses, especially those such as Anna whose conditions are under-recognized or misunderstood by the public and even the medical community.Anna summed up, "I'm learning to live with it. I want people to know they're not alone. Even with a condition like this, life can still be full."What is Fowler's Syndrome?Initially identified in 1985, Fowler's Syndrome is an uncommon etiology of urinary retention in females, generally aged between 20 and 30 years. Fowler's Syndrome affects the urethral sphincter—the muscle that controls the release of urine—making the muscle remain constricted, even when the bladder is full. This leads to a lack of ability to urinate spontaneously.In contrast to most other causes of urinary retention, Fowler's Syndrome is not associated with neurological disease. It may come on suddenly in some cases with no apparent cause. In others, it may follow surgery or delivery.Symptoms of Fowler's SyndromeSymptoms differ from patient to patient. Some may be able to urinate but not completely empty the bladder, while others—such as Anna—are completely retained. With the filling of the bladder, severe pain and frequent infection ensue. Many women experience recurring cystitis, kidney infections, and constant pain.What Causes Fowler's Syndrome?To this point, the true cause of Fowler's Syndrome has not been discovered. Scientists are still trying to determine why the urethral sphincter does not relax. Some speculations include hormonal connections, particularly because approximately 50% of patients also suffer from polycystic ovaries, yet no cause has been determined.The syndrome could develop spontaneously or after surgery—most often gynecological or urological—or after delivery. Without an established cure, symptom management becomes the main priority.Treatment for Fowler's SyndromeTreatment of Fowler's Syndrome depends on severity.Mild Cases: Patients with the ability to urinate partially might only require monitoring to assess residual bladder volume.Moderate Cases: Those with high residual volumes might need intermittent self-catheterization several times a day to avoid infection and bladder damage.Severe Cases: In complete retention cases, patients can be considered for sacral nerve stimulation—a treatment involving the use of electrical pulses to stimulate nerves and return bladder function. This is still the only treatment with hope of restoring natural urination in some patients.