Usually, when you have symptoms of a urinary tract infection (UTI), the process is simple: You go to the doctor, pee into a cup, and get a prescription for antibiotics. But sometimes, UTIs are more complicated. Not all of them show up in standard urine cultures, and when they aren't caught, they can linger for weeks, months, or even years.
"Chronic UTIs are not uncommon and can last for months at times," Chirag Shah, MD, emergency medicine physician and co-founder of Accesa Labs, tells Bustle. "UTIs can be missed on standard tests because urine lab tests are not 100 percent accurate. Also, a lab test can come back negative if the right test is not performed."
"Most people, usually women, struggle to ever achieve a proper diagnosis once they fail standard UTI dipstick and culture tests designed for acute UTI," Andrea Sherwin, Chronic UTI Australia spokesperson, tells Bustle. "A common outcome for someone with a chronic UTI is, after many months or even years of symptoms, to be misdiagnosed with an incurable urinary syndrome like interstitial cystitis, painful bladder syndrome, and overactive bladder syndrome."
Many people with chronic UTIs endure "months, and more often years, of not being taken seriously by doctors and have given up on receiving any real help at all from the medical profession," says Sherwin. "Symptoms vary between individuals, but in general, these women live with debilitating bladder and pelvic pain and burning and constant urinary frequency and urgency. If left untreated, which is sadly usually the case, chronic UTI ruins lives, relationships, self-conﬁdence, and the ability to work, be sexually intimate, and manage families."
Chronic UTIs have been very poorly understood and largely ignored up to the present, but fortunately, we're coming out of the dark ages. Here are some things we know about chronic UTIs so far, according to experts.
They're Often Misdiagnosed
Because usual testing methods don't detect them, people with chronic UTIs often get diagnosed with syndromes like interstitial cystitis and overactive bladder. These diagnoses can be devastating because they're considered incurable (though symptoms can be alleviated), says Sherwin.
"We think the first steps in addressing chronic UTI is acknowledging it as a real condition, recognizing UTI dipsticks and standard urine culture testing is grossly insensitive, and giving patients the benefit of the doubt when they report UTI symptoms but return negative test results," she says.
They Require Treatment
"We see people whose lives are devastated by chronic recalcitrant bladder pain and recurrent cystitis. Many cannot work, travel, have sex, participate in social activity, and live a normal family life," says Malone-Lee. Not treating a bladder infection is also dangerous because it can get up to the kidneys. So, if you have symptoms of a chronic UTI and aren't getting answers (or are getting dismissive responses from doctors), find someone who listens and offers a proactive treatment plan.
Usual UTI Treatments May Not Work
In those with chronic UTIs, the bacteria invade the lining of the bladder and stop dividing, making them difficult to target with antibiotics, says Malone-Lee.
"The situation is akin to weed seeds in the garden," he says. "When the situation is congenial, these weeds will sprout and grow. A weed spray (antibiotic) will kill off this growth, but there remain resistant seeds waiting to come out when the circumstances are ripe."
Malone-Lee treats chronic UTIs with a combination of the urinary disinfectant Methenamine and a first-generation, narrow spectrum, urinary antibiotic. "We then withdraw treatment by a process of trial and error until the patients can manage without the antibiotic first, and then the methenamine," he says. However, it's best to talk to your healthcare providers about the best treatment option for you.
If you suspect you might have a chronic UTI, Wolfe recommends seeing a urologist who specializes in chronic UTIs and other chronic urinary disorders. Don't give up until you find a doctor who takes you seriously and puts together a treatment plan that works.