There is a failure in our medical system. Those living with chronic UTI can tell this story like the back of their hand: a tale of going to the doctor's office with all the symptoms of a UTI only to undergo a single test. Often, this test will come back negative, and the patient, despite usually having all the symptoms of a UTI, will be dismissed and denied treatment. Such a tale can end poorly, with the patient going from doctor to doctor without success or even giving up and accepting the possibility of a dangerous untreated bacterial infection.
Yet what if I told you that despite its common use, this test was widely regarded as highly inaccurate by researchers? You may be familiar with this test, it is the gold standard of UTI treatment as touted by the American Urological Association: the dipstick test. Yet for many living with UTI, the dipstick test is less than satisfactory. Although it carries a whopping 70% inaccuracy rate according to research, the dipstick test is nonetheless used as the baseline for UTI treatment all over the world.
It shouldn’t be a controversial statement to say that patients deserve care, to be taken at their word for their pain. However, the reality couldn’t be further from the truth for many who go to the doctor to seek treatment for UTI. Most people living with UTI will experience doctors outright disregarding them, if not fully doubting their knowledge of their lived experience. This is in part due to the research outpacing what is being taught in medical education. The lagging of actual practice behind research is but one issue with how our healthcare system treats those with recurrent UTI. Here at UTI Health Alliance, we hope to foster better awareness about some flaws in UTI healthcare.
Patient failure by healthcare professionals
For those experiencing chronic UTI, doctors’ insufficient understanding of UTI and even unprofessional behavior can be the norm. In a Chronic UTI Australia study, patients reported being told insensitive comments by doctors, such as to “sit on the toilet longer,” or “practice better hygiene.” Most offensive is that many patients are told in a degrading manner to “wipe from front to back.” Some patients even received crass and unprofessional comments about their sexual lives.
While recurrent UTI is a well-documented medical condition, doctors have been known to shrug off patients’ pain, contributing their UTI instead to mental health issues. These doctors will tell patients to seek therapy, to do yoga, or to simply accept a lifetime of pain without treatment. Similarly, doctors may refuse to acknowledge the existence of a UTI within patients at all. One patient approached UTI Health Alliance with a strikingly similar story. Penelope said, “I immediately knew I had developed an infection, but when I went to the doctor’s office, they told me the test came back negative and that I did not have anything wrong with my bladder. In fact, I was asked multiple times if I was drinking enough water, or simply stressed out.” For patients, it can be an exhausting gamble trying to find a doctor who will believe their experience.
Lack of knowledge among professionals
A frequent and frustrating reality that many patients report is that many health professionals know very little about recurrent UTI. An example of this is the doctors' lack of awareness of the widely acknowledged diagnostic errors with the “gold-standard” dipstick test. On this matter, Chronic UTI Australia reported that 92% of these women had a negative test result, but only 39% of women with a negative result were informed of the diagnostic flaws with the testing. Jennifer, who reached out to UTI Health Alliance, shared that “I had begun to dread going to doctors for my symptoms because I knew my urine tests were going to be negative (eventually, they always were) and more and more in recent years I’d had to argue to get even short-course antibiotics to try to knock the infections back.”
Many of those living with UTI will go to the doctor’s office with more knowledge about their condition than trained medical professionals. When living with a condition that doctors regularly dismiss, patients instead turn to doing their research about chronic UTI. While this can empower and educate the patient about their options, they as a result encounter doctors who are less informed about current research into UTI than they are. We as patients are seeing research fail to filter down into medical school and doctor’s practices, and that is inevitably discouraging.
Misogyny in UTI treatment
There is an elephant in the room regarding the treatment of recurrent UTI: statistically, UTI is much more likely to happen to women and those born with female anatomy than anyone else. While ideally, this wouldn’t affect the way doctors treat women with UTI, the fact is many women living with UTI will experience blatant misogyny in the doctors’ office. Seen as a “women’s issue,” those living with UTI will be dismissed, ignored, or shrugged off by the doctors who should be helping them. The statistics reflect this reality as well. One study showed that 40% of women going to the doctors for UTI have been told they were being “overdramatic,” and that 45% of women with UTI were told that their symptoms were simply “part of being a woman.”
This behavior is unacceptable in any kind of medical profession, but because UTI primarily occurs in women, misogyny runs rampant in the doctors’ office. Disregarded and with no one to turn to, frustration is a natural conclusion. One woman involved in this study, Louise, at 42, stated that “I felt like they saw it as ‘women’s pain’ – something to be dismissed and minimized.” While this is but a single quote, the sentiment is echoed among many patients.
Hope for change
It can be hard not to get discouraged in the face of all of this misinformation. While doctors are not at fault for being taught outdated information about UTI, clinics nonetheless continue to use outdated diagnostic methods, resulting in many infections going untreated. However, there is hope too. More advanced testing now exists and can be requested in place of the dipstick test. Moreso, you as the patient have the lived expertise on your body and symptoms and that deserves to be heard. On our website, we have a guide for questions to ask your doctor and yourself to prepare for your appointment. While research must begin to reach the doctors’ offices, you as a patient always have the power of your voice and autonomy. With our voices together, we can create change and advocate for better, more accurate treatment of chronic UTI.