Dr. Jennifer Rohn is angry.
As head of the Centre for Urological Biology at University College London, she has spent more than a decade of her career researching urinary tract infections. She knows there are more than 400 million UTIs each year, almost all of them occurring in people with vaginas – yet Dr. Rohn says treatment, testing, and overall understanding of UTIs remains lacking and outdated.
The antibiotics that medical professionals have always relied on to treat UTIs may not be as effective anymore, she says, due to antimicrobial resistance – bacteria and microbes evolving to fight the drugs designed to kill them. The method of running a urine test for a UTI results in false negatives too often, with far too many people testing negative when they actually do have a UTI. What’s worse, Dr. Rohn says little progress has been made likely because of who UTIs are most likely to affect.
“A hundred years since we discovered antibiotics, we still don't have another therapy,” Dr. Rohn, PhD, said at a speech on Ada Lovelace Day, a celebration of women’s achievements in STEM. “It's been 70 years and we still don't have a better diagnostic for UTIs and many UTIs are missed. Why is this? I think it's a problem because this is primarily a disease of women.”
Studies have shown time and time again how often women's pain gets overlooked in the medical realm. They’ve found that healthcare providers frequently recommend psychological treatment to women rather than taking their symptoms as serious as the may men’s. They’ve found that women have to wait longer to receive pain medication than men. “Women's pain is undervalued and under-appreciated. Women's symptoms are dismissed, and research into women's diseases are underfunded,” Dr. Rohn tells Teen Vogue.
What that means when it comes to UTI treatment and funding for UTI research – an infection more than half of all women will contract at some point in their lives, with anywhere from 20-40% of those women experiencing recurrent episodes – is millions of patients having to learn to advocate for themselves. “It's not perceived as being a very serious thing,” Dr. Rohn says.
But for many, it is quite serious. Melissa Kramer lived with the constant pain of recurrent UTIs for five years. Her urine tests kept coming back negative, and her doctors kept prescribing her antibiotics, which she says wreaked havoc on her gut health and caused her to contract chronic yeast infections. “You don’t have any options,” Kramer says. “There was no better testing I could do, no other treatments I could try. So you're just going around and around in circles, being told that this is it for you for the rest of your life.”
Since forming the community advocacy group, Live UTI Free, Kramer has met countless others who have had their lives upended because of chronic UTIs. Some cannot get out of bed because the pain is so debilitating. Others have trouble keeping a regular job, having to always run to the restroom. “It's the second-most common reason for the prescription of antibiotics, yet so little has been done about it,” Kramer says.
Previously, UTIs were pretty much exclusively thought to be caused by bacteria from an outside source entering the urethra, causing an infection - which is true for a primary infection. But recent research, including Dr. Rohn’s, has shown that a number of bacterial strains are also able to burrow and form pods within the bladder wall before bursting through and ending up in the urine. This could explain why so many urine tests fail in detecting bacteria, as the bacteria is hiding in the bladder wall. It also explains how some patients can take antibiotics to treat a UTI, only for the infection to come back a week later – antibiotics cannot infiltrate the bladder wall and bacteria pod.
But the research of the past few years hasn’t necessarily found its way into all medical training, Dr. Rohn says. In her teaching job at University College London, Dr. Rohn says she has discovered just how little medical students are taught about UTIs. Meanwhile, Live Free UTI has compiled a list of trusted clinicians for patients frustrated with their current treatment – “The main thing that sets them apart is that they acknowledge this as a problem,” Kramer says – but the list consists of only about 250 doctors in a handful of countries, and some are so inundated that they cannot take on any new patients. “It's not cheap for people to travel to see these doctors, and it's still so limited in what people can access,” she says.
Despite the lack of urgency around UTIs, Dr. Rohn and patient advocates like Kramer are optimistic about what the future holds. Dr. Rohn has been able to drum up more interest in her research when she connects it to antimicrobial resistance. “People are realizing that UTI treatment is driving the crisis,” Dr. Rohn says.“When you have 400 million people being treated for UTIs, that's a lot of antibiotics in the system, everywhere.” And with somewhat more attention on UTIs and UTI research, scientists have been able to develop some promising treatments. Dr. Rohn is chief scientific officer of AtoCap, a University College London-backed company that is developing a drug that would allow antibiotics to penetrate the bladder wall to directly fight the bacteria pods – they’re currently in the process of raising the funds to get through clinical trials. Meanwhile, vaccines like Uromune that tackle a few specific strains of bacteria are available in some countries – but only if a patient takes on full responsibility for importing it (Uromune is no longer available in the US after the FDA changed its import regulations).
Beyond anything else, Dr. Rohn is hopeful for the future of UTI treatment and research because of advocacy groups like Live Free UTI. With few other places to turn to, patients have had to bolster each other. While it’s never an ideal situation when patients are forced to advocate for the care they need, in finding each other and joining up to demand proper care, they are pushing for the solutions and research missing in this field. “They're saying, when you go to your doctor, don't take no for an answer,” Dr. Rohn says. It’s a sentiment with which Dr. Rohn is very familiar: “They’re saying, ‘Be angry.’”
