In 2015, Jessica Price, 35, an Air Force veteran in Illinois, started experiencing urinary tract infection symptoms, including an unrelenting urge to urinate and bladder pain. But standard testing kept coming back negative. Based on her symptoms and the negative tests, doctors told Price she had interstitial cystitis, an incurable syndrome of unknown cause and suggested several invasive procedures that only worsened her pain.
“I was on more medications than I can remember, none of which helped and some which made the symptoms worse,” she said. “The urologists told me things such as, ‘This is just like having blue or brown eyes; you were destined to have it.’ ”
But when a nurse practitioner turned to a new type of test that used DNA analysis of her urine, she found bacteria that was abnormal, and Price began two years of antibiotics that finally brought her relief.
Urinary tract infections are one of the most common ailments women encounter, with at least 40% to 60% getting one during their lifetime, according to the National Institutes of Health. Usually, they’re diagnosed with a dipstick analysis — in which a doctor dips a plastic stick into a urine sample to check it for signs of bacteria. In most people, a course of antibiotics resolves the problem. But for some people, like Price, the agony persists even when testing shows nothing, and the pain and urgency become chronic.
Chronic urinary tract infection (UTI) is not a universally accepted diagnosis, but James Malone-Lee, Emeritus Professor of Medicine at University College London, believes most people diagnosed with interstitial cystitis, also known as bladder pain syndrome, actually have chronic UTIs.
The National Institute of Diabetes and Digestive and Kidney Diseases said the condition may affect between 3 million and 8 million women and between 1 million and 4 million men in the U.S.
Though there is no standard treatment for such cases, David Kaufman, a New York urologist, said he believes new tests could help many people get diagnosed and treated.
“I think the failure … to diagnose these patients definitively with chronic, low-grade infections is a result of the inability of [the standard] two- to three-day commercial cultures to identify the infection. This will hopefully soon change as labs begin using molecular systems to identify microbial DNA and RNA in urine,” Kaufman said. “I do think the DNA sequencing testing is going to be a game-changer.”
Part of the problem with standard UTI culture tests, which came into use in the 1950s, is that they can grow bacteria for only 24 to 48 hours, he said. This means infections caused by small amounts of bacteria may not grow enough for doctors to detect them. While Kaufman doesn’t use DNA tests because they’re not yet licensed by New York, he uses another new test called liquid broth cultures, which lets bacteria grow for eight days.
“Dipsticks and cultures are being advocated in protocols and guidelines all over the world, so those guidelines are hopelessly deficient,” Malone-Lee said. “It is women who pay the price being denied treatment and told that they do not have a UTI when they do have a UTI.”
A 2017 study of 306 women published in Clinical Microbiology and Infection found that one in five women with UTI symptoms had negative results on the standard tests, yet a DNA analysis test found E. coli, a bacteria known to cause UTIs, in 96 percent of the symptomatic women’s urine.
Sheela Swamy, University College London obstetrician and gynecologist, has calculated that patients suffered on average 6.4 years before coming to her chronic UTI clinic.
Many experts believe doctors should entertain chronic UTIs as a possibility before using IC as a diagnosis.