Interstitial cystitis (IC) is a chronic bladder condition that mimics many of the symptoms of UTIs, bladder and/or urethra irritation, frequent urination, and a constant feeling like you have to pee but it may not be caused by an infection.
Over half of women get a urinary tract infection (UTI) at some point in their lives, but even more experience symptoms of one. Sometimes, people will have all the telltale signs of a UTI, a constant urge to pee even when nothing’s in there, burning while peeing, and/or pain in the bladder but their urine cultures will come up negative. Does this mean you have a UTI that’s just not showing up on tests, or does it point toward a different health issue? It turns out those are both possibilities.
1. A UTI That The Test Isn’t Detecting
One possibility is that you really do have a UTI. Standard urine cultures don’t always detect them. One 2017 study in Clinical Microbiology and Infectionfound that one in five women with UTI symptoms had negative results on the standard tests, but almost all these women had UTIs according to the more sensitive quantitative polymerase chain reaction (qPCR) test.
“Standard urine cultures test for specific types of bacteria, but many women will have infections that are not able to be grown in these cultures,” Rice says. “Another possible reason for a false negative test (no bacteria grown) is that often, the test requires a certain number of bacteria to be grown in culture. For instance, if someone has just urinated prior to leaving a sample and there is not a sufficient quantity of urine built up in the next voided sample, it is possible for a standard urine culture to report negative findings.” A false negative can also occur if you’ve already taken antibiotics, so make sure not to do that.
If you think you might have a UTI that’s not being detected, your doctor may be able to do a PCR laboratory test, Rice says. Jennifer Linehan, MD, urologist and associate professor of urology and urologic oncology at the John Wayne Cancer Institute at Providence Saint John’s Health Center in Santa Monica, tells Bustle that another type of test called Next-Generation Sequencing (NGS) is even more accurate.
Even then, it may not always be clear what your results mean because doctors don’t fully understand which bacteria do and don’t belong in the urine, Linehan says. Not all bacteria are problematic; some are healthy bacteria that get into the sample from the vagina, and others are just part of the urinary microbiome. So, the presence of bacteria doesn’t necessarily mean you have a UTI. Your doctor should be able to help you interpret the results, or you may even want to consult multiple doctors.
2. Urethra Irritation From Intercourse
“I have many patients with urethritis after intercourse who believe they have UTIs, but when I culture before and after, the cultures are negative,” Rice says. People sometimes even call the UTI-like symptoms you can get from intercourse “honeymoon cystitis.” If this is what you’re dealing with, the symptoms should go away within a few days without antibiotics. “Often, if I prescribe natural supplements and bladder pain relief medications, the symptoms are limited to less than 24 hours,” Rice says.
3. Interstitial Cystitis
Interstitial cystitis (IC) is a chronic bladder condition that mimics many of the symptoms of UTIs — bladder and/or urethra irritation, frequent urination, and a constant feeling like you have to pee — but it may not be caused by an infection. It’s unknown what causes it, and the causes are different for different patients. Some have visible damage to the bladder lining that appears to be causing the discomfort, but others don’t.
“There are many working theories including an autoimmune component, chronic inflammation, and even neurologic causes, but currently there is no one hallmark cause and effect for this diagnosis,” Rice says. “Interstitial cystitis/bladder pain syndrome is generally a diagnosis of exclusion unless patients have very textbook symptoms. This means when everything else including infection and anatomical conditions are ruled out, then I start to consider IC as a diagnosis. I will find that many patients who come to me with a diagnosis of IC/BPS simply have not had an adequate history, physical, or workup performed.”
Interstitial cystitis has a number of treatments, including dietary changes, medications, and procedures like bladder instillations.
4. An STI
Some STIs like gonorrhea and chlamydia cause symptoms like frequent urination and bladder pain that can be confused with a UTI, family medicine doctor Sheryl Recinos, MD, tells Bustle. You should be able to rule these out or in pretty easily by getting an RNA-based test, she says.
5. Bladder Hypersensitivity
Some people develop UTI-like symptoms in response to bladder irritants, like caffeine, spicy foods, and citrus foods, because their bladders are hypersensitive, Linehan says. You can test for bladder hypersensitivity with a urodynamics test, where the bladder is filled with a very small amount of fluid. “If the patient reports that they have to urinate when only a small amount is in the bladder, that is hypersensitivity,” Linehan says. Often, this problem will go away simply through dietary changes.
6. Lyme Disease
Many doctors who treat Lyme Disease have been noticing symptoms like frequent urination and bladder pain in their patients. “I always found a number of my [Lyme] patients had been having IC issues,” internist, epidemiologist, and Lyme expert Daniel Cameron, MD, MPH, tells Bustle. “I would send them to urologists or gynecologists, but it would clear up when I treated the Lyme disease.”
This could be happening for a number of reasons: Lyme bacteria can get into the bladder, they can trap other bacteria in the bladder, and they can infect parts of the nervous system that innervate the bladder. Because Lyme disease is a fast-growing epidemic, it’s reasonable to bring it up with your doctor if you’re having bladder symptoms, according to the Interstitial Cystitis Network. Lyme testing is not straightforward, so make sure you consult a Lyme-literate doctor who’s paying attention to more than just your blood test results.
7. Pelvic Floor Dysfunction
Pelvic floor dysfunction is improper positioning of your pelvic floor muscles, which surround your bladder, bowels, and reproductive organs. If the muscles around your bladder are too tight, this can lead to bladder or urethral pain and/or frequent urination.
Sometimes, the dysfunction comes from having had a UTI in the past, Stephanie Prendergast, CEO and co-founder of the Pelvic Health and Rehabilitation Center, tells Bustle. “A UTI is a painful visceral experience which causes pelvic floor muscle tightening in response to the pain,” she says. “Sometimes the muscles do not relax after the UTI is treated with antibiotics, especially if the person has had a number of infections in a short period of time.” You can see a pelvic floor physical therapist to get evaluated and treated for pelvic floor dysfunction.
If UTIs go untreated, they’ll often clear out on their own, but sometimes, they can make their way up to the kidneys, and a kidney infection requires immediate attention, Linehan says. If you begin to experience signs of a kidney infection, like blood in your urine, fever, or back pain, talk to your doctor right away.