At 25, Andy began experiencing sharp bladder pain following urination, initially attributed by his physician to a mild urinary tract infection or bladder spasm. Over the next year, he developed persistent perineal pain and noticed a lump in the tissue between his scrotum and anus. A urologist diagnosed him with atypical Peyronie’s disease, a condition characterized by the formation of plaques beneath the skin of the penis that can cause pain and deformity during erections. Despite the diagnosis, Andy’s symptoms persisted, driving him to over 100 medical consultations across multiple specialties, including urology, gastroenterology, psychology, and rheumatology.

Repeated imaging and tests, including MRI scans involving the injection of Caverject to induce erections for better vascular assessment, ruled out cancer but failed to offer a definitive explanation for his ongoing pain. Andy’s doctor at one point suggested his condition reflected a “phenotype for chronic pain” and encouraged alternative approaches, including reading a book on mindfulness, which did little to alleviate his distress. Over the years, Andy endured constant pain, psychological strain, and growing frustration as treatments such as antidepressants, beta-blockers, acupuncture, and psychotherapy proved ineffective.

Between 2004 and 2010, Andy’s pain intensified, prompting consideration of surgical removal of the lumps, but medical advice strongly discouraged the procedure. Despite these challenges, he maintained a career as a software engineer, founded businesses, and raised a family. However, his condition led him to seek further medical help in 2014 after selling his company and acquiring private health insurance.

Weight loss, intermittent diarrhea, and persistent discomfort eventually prompted a referral to consultant gastroenterologist Tom Creed in Bristol. Creed’s examination uncovered subtle inflammation in the rectum and a biopsy revealed granulomas—clusters of immune cells indicative of chronic inflammation. When Creed asked about travel history, Andy recalled a gap year almost three decades earlier in Tanzania, during which he frequently swam in Lake Tanganyika.

Based on this history and medical findings, Creed suspected schistosomiasis, a parasitic infection caused by blood flukes commonly found in sub-Saharan Africa. Blood tests confirmed the diagnosis. Schistosomiasis occurs when the parasitic worms’ eggs infiltrate tissues, causing inflammation, scarring, and potentially severe complications such as kidney failure and bladder cancer. Consultant physician Mike Brown of the Hospital for Tropical Diseases in London explained that the worms can aberrantly inhabit the genital tract, leading to chronic pelvic pain. Though the parasites are treatable with praziquantel, tissue damage from eggs remains a lingering issue.

Andy’s diagnosis explained nearly 30 years of unexplained symptoms, including what had been previously misdiagnosed as malaria during his initial infection. Following treatment, his antibody levels declined, symptoms of malaise and headaches receded, and he gained weight, though pelvic pain persists along with an elevated risk of bladder cancer.

Now 51 and living in Bristol, Andy underscores the challenges patients face when confronted with little-known tropical diseases in non-endemic countries. While schistosomiasis affects millions worldwide, particularly in Africa where the World Health Organization estimates over 90% of those needing treatment reside, the condition remains largely unfamiliar in developed nations.

“In terms of hardship, this all pales in comparison to battling against the misapprehension that I was suffering from an imaginary condition,” Andy reflected. He hopes his experience will increase awareness of schistosomiasis and the importance of considering travel history in diagnosing persistent, unexplained symptoms.