Andy L. was a 19-year-old philosophy student at the University of Southampton, in England, when he first experienced a general malaise that left him with persistent headaches and feeling like he had a constant hangover.
A visit to the university’s health clinic yielded a normal blood test; the doctor suggested Andy’s ailments were due to a bumpy transition to university life.
But even after another normal blood test nine months later, the malaise continued. Then anxiety set in. After a panic attack, Andy returned to the doctor, who was now more emphatic that the problem was psychological. Andy was not convinced. After graduation, he hitchhiked from Britain to Ethiopia, a trip that gave him confidence he could function even as his health deteriorated.
At age 25 he began experiencing jabbing pain in his bladder after urinating. A physician said it was probably a mild urinary tract infection or, perhaps, a bladder spasm. Drink plenty of water, the doctor advised.
The following year, Andy awoke with pain in his perineum, the area that extends from the base of the scrotum to the anus, and he felt a lump deep in the tissue. His general practitioner sent him to a urologist, who diagnosed Andy with “atypical Peyronie’s disease,” a condition where plaques — sometimes painful — form in the deeper tissues under the skin of the penis, causing it to bend during erections.
The diagnosis came as a relief at the time: “I thought: ‘Oh, good, something they can give a name to,” said Andy, who spoke on the condition of partial anonymity given the sensitive nature of his medical condition.
That relief would not last. Follow-up tests over the years involved MRIs using Caverject, a drug injection into the penis that induces an erection so clinicians can assess vascular function and more clearly view the anatomy.
“It was an unpleasant experience,” Andy said. “Walking around the hospital and then in the MRI machine for 45 minutes with an erection.”
Still, the test ruled out cancer. But Andy knew his various symptoms did not fully align with Peyronie’s, partly because his pain was constant.
That was just the start of Andy’s medical odyssey — a sometimes surreal quest that led him to more than 100 doctor appointments that included urologists, gastroenterologists, psychologists, and rheumatologists. He also saw an andrologist focusing on men’s reproductive health, sexual function, and urology problems.
His physical symptoms — and extensive medical research — left him certain something biological was wrong. But the medical establishment often disagreed, leaving him questioning his own sanity and wondering if he was doomed to a life of unrelenting pain even while building a successful career and family.
“I have the feeling that I am made up of two people traveling in different directions,” he wrote in his journal. “The person who feels ill and alone, and the person with some momentum behind them.”
Constant pain
Despite the pain, Andy’s life went on. He worked as a software engineer at the BBC, where he met his future wife. The couple had three children. During this period, from about 2004 to 2010, Andy said he experienced perineal pain “all the time.”
It grew so intolerable that Andy asked his doctor about the viability of cutting out the aching lumps in his perineum. His doctor strongly advised against it.
In 2010, he saw yet another urologist. This doctor’s note described Andy’s “constant pain … which feels like someone is pulling … his penis with a wire.” In response, the urologist told Andy it was time to stop fixating on his condition.
“I strongly reassured him he does not have a serious medical condition, i.e. cancer, however, clearly he has a debilitating problem because he is very preoccupied with it,” the doctor wrote, adding that Andy had “a phenotype for chronic pain.” Finally, the doctor suggested a book on alternative healing called Teach Us to Sit Still — which, the clinician noted, he had never read.
Further demoralized, Andy did not see another specialist for five years. He began running, which offered distraction, and threw himself into work, including leading a digital consultancy and building an analytics business with his brother. He started drinking wine every night to sleep.
In 2014, he sold his analytics company and, with new private medical insurance, “embarked on another fruitless expedition” for a diagnosis. He also tried a range of treatments — various antidepressants, psychotherapy, beta-blockers, acupuncture, and a pain clinic — with little or no success. He saw a new urologist who said his condition “can’t be Peyronie’s,” but additional specialists could not find anything conclusive.
Andy grew so weary of feeling ill with no explanation he remembers thinking, “How long can I go on?”
A simple question
Then Andy began losing weight — about 14 pounds in a few months — and experienced intermittent diarrhea. He was referred to Tom Creed, a consultant gastroenterologist in Bristol.
Creed said it was clear Andy had been “traumatized” both by his painful symptoms and his experience in the medical system. “Nobody was really listening to him, and it struck me from the get-go that this was a genuine story, and he was really struggling,” Creed said.
Creed ordered a colonoscopy, which he described as “very unexciting” until the end, when a bit of low-grade inflammation in the rectum caught his eye.
“I thought, ‘it doesn’t look quite right,’” so he removed a tissue sample for biopsy. The pathologist identified something curious: a granuloma in the rectum — a foreign body surrounded by inflammatory cells.
That’s when Creed asked Andy a question no doctor ever had: “Have you traveled anywhere exotic?”
It turned out he had: nearly 30 years ago Andy spent a gap year teaching in Tanzania, where he washed and swam every day in Lake Tanganyika.
“That was the moment the penny dropped for me,” Creed said. He remembered something from medical school and, thinking it was a long shot, sent the tissue off for another test and ordered blood work to look for antibodies that could confirm a rare condition he had never seen in a patient.
Results validated Creed’s hunch: Andy had been suffering from schistosomiasis, a disease caused by parasitic worms, for nearly three decades.
“Suddenly [there was] a unifying diagnosis,” Creed said.
Schistosomiasis is a “neglected tropical disease,” according to the World Health Organization, most prevalent in sub-Saharan Africa, where parasitic worms live in certain freshwater snails that inhabit lakes and rivers. The worms infect people by burrowing into human skin as larvae, then traveling through veins into the bloodstream. There, they pair up, migrate to the liver, bowels, or bladder, and adult females start pumping out eggs — hundreds of them — which can lodge in various organ tissues, triggering an immune response. Humans pee or poop the eggs back into the water, where the cycle begins again.
Andy had urogenital schistosomiasis, said one of his doctors, Mike Brown, a consultant physician at the Hospital for Tropical Diseases in London. In this disease, worms can take a “wrong turn” and wind up in the genital tract, where they can get trapped in the tissue and cause the kind of pelvic pain Andy experienced, Brown said. If left untreated, the eggs continue to penetrate the tissue lining, causing inflammation and scarring that can result in kidney failure, bladder cancer, and infertility in women. Brown said that adult worms can survive for 30 years or more and continue to produce inflammation-triggering eggs.
When Andy got the phone call confirming the diagnosis, he was stunned. At 47 years old, he could finally see the path of his illness. He remembered a diagnosis of malaria in 1993 while he was living in Tanzania and spiked a 102 degree fever. The malaria test was negative, but the doctor insisted, “What else could it be?” This, Andy now believes, was most likely the acute phase of schistosomiasis.
“When Creed called, he thought he was giving me bad news, but I was over the moon,” Andy said. “Having a diagnosis overruled any feeling of unease about the parasites living inside of me.”
Following treatment with the drug praziquantel, the high level of antibodies in Andy’s blood decreased. “It’s an easy parasite to kill with the drugs,” said Brown, the tropical disease doctor. But even though the worms are dead, eggs already in the tissue remain and can cause ongoing problems.
For Andy, now 51 and a tech consultant living with his family in Bristol, that means continued pelvic pain and a higher risk of bladder cancer, among other issues. But his headaches and malaise are gone, and he gained back the weight he had lost. “In terms of hardship, this all pales in comparison to battling against the misapprehension that I was suffering from an imaginary condition.”
These days, Andy just wants to raise awareness about the disease to prevent others from suffering.
“What happened to me happens to countless people in Africa,” he said.
Indeed, the WHO estimates that more than 93% of people requiring treatment for the illness live in Africa.
“Hundreds of thousands die every year, often from organ failure or bladder cancer. Many more are subjected to chronic illness,” Andy said.
“But despite its prevalence,” he said, “schistosomiasis is a disease that most people in the developed world have never heard of.”
Rachel Zimmerman is a journalist and writer based in Cambridge, Massachusetts. Her book “Us, After: A Memoir of Love and Suicide” was published in 2024.
