science of us

The Wild, Necessary World of Online Advice for UTI Pain

Ever since I can remember, my mother warned me not to sit on cold surfaces. “That’s how you get a bladder infection!” she’d holler if I dared sit down on a rock, shooing me aside to put something down to prevent me from “catching a chill.” I didn’t really understand the drama at the time, but the look on my mother’s face drilled the message into me. Even now, I can’t sit on anything cold for more than a minute before I hear my mother’s voice in my head, prompting me to stand up.

Despite my mother’s best, if misguided, efforts, eventually I got a urinary tract infection, anyway. I was 26, and at first, I didn’t realize what was happening. I had no idea it could be so painful it would leave me gasping, rocking back and forth on the floor. Panicking, I went to the emergency room — it was the middle of the night, and I was peeing dark red blood, like something out of a horror film. I was too shocked to feel sheepish when the doctor diagnosed me in ten seconds flat: “It’s just a UTI.”

This pain, anxiety and hassle will be familiar to many: UTIs account for over 8 million doctor visits in the U.S. every year, costing $1.6 billion to treat. Causing mild to severe pain along with a constant and urgent need to urinate, this is among the most common bacterial infections that people suffer from, according to the Centers for Disease Control and Prevention.

Over half of all women will experience at least one UTI in their life. Most of those women will be treated with antibiotics, the standard UTI remedy. But 20 to 30 percent of these women experience recurrent UTIs, leaving many desperate to find a cure that stops the UTIs from coming back. That was my thinking two years ago, when I was taking antibiotics on a nearly monthly basis, desperate to break the cycle. But how can you find help when your doctors dismiss you? After all, it’s “just a UTI.”

My mother may not have been able to save me from ever getting UTIs. But advice like hers, I soon found, would prove invaluable after all. Because when modern medicine fails us, women help each other.

As my mother demonstrated to me all those years ago, there has always been a backchannel of UTI advice, some of it more reliable than others. These days, the internet has turned this local network into a global conversation. I had my first discussions about UTI prevention with friends and family, but it wasn’t until I spent a night googling, unable to sleep through the pain, that I started finding the answers that I credit with last year being slightly better than the one before — and why I believe this year will be even better still.

While there is a notable minority of men who suffer, this is primarily a female issue: The female urethra is shorter than the male, providing an easier path for infection-causing bacteria. The gendered nature of UTIs isn’t helpful in the quest to find a cure, as women’s pain is often taken less seriously. Studies have shown that doctors of both genders are less likely to give women painkillers and make them wait longer for treatment, and that some doctors may even believe that women have a “natural capacity to endure pain.” This means that women (or any person with a female anatomy) will not only have to be their own advocates, but also become experts in what they can do, and what they can take, to reduce the frequency of their UTIs. Many of them will find those answers from each other.

The internet is full of groups and chats — found across Reddit, Facebook, blogs like LiveUTIfree.com and the odd Yahoo! Answers — where people talk about their experiences with UTIs. And there is genuine help to be found in these backchannels, tried and true home remedies that really work. “I always took cranberry pills, as they seemed to work if I took them early enough,” said Janet, who suffered recurring UTIs for five years. Janet may be onto something. Currently, the most scientifically promising alternative UTI treatments are probiotics (especially lactobacilli — the bladder isn’t actually sterile), d-mannose (a nutritional sugar that binds to bacteria), and cranberry (certain pills only, and not juice as it’s too diluted).

And yet there is reason to be skeptical here, too; lots of the stuff that gets touted around as a potential cure has little or no scientific backing whatsoever. The doctors I’ve spoken to have all said the same thing: Proceed with caution. While alternative treatments may seem promising, they have yet to be subjected to proper scientific study. This means we cannot say for sure whether they work, nor even if they are safe. Anecdotal evidence aside, this is the reason most doctors are so reluctant to suggest anything that’s not part of the official treatment protocol.

The internet forums have no such qualms, however. Changing your diet is common advice, as well as avoiding alcohol, spicy foods, caffeine, chocolate, and artificial sweeteners. Scented soaps and washing powder, synthetic underwear, and having a sex partner with poor hygiene also gets short shrift on these forums, along with spermicidal lubricants, the contraceptive pill, sugar, candida overgrowth, lack of exercise, dehydration, and, of course, the generic “stress.” If it sounds extreme, so are some of the stories. There are people who say they’ve been forced to quit their jobs due to a severe form of UTI pain called interstitial cystitis. Is it any wonder they’re willing to try everything to get their lives back?

“I tried eating massive spoonfuls of coconut oil once, because I’d heard it was antibacterial. I tried corn silk tea and cream of tartar. I went through every internet forum and did everything I could think of to stop getting UTIs. It was ridiculous,” said Juliet, as she describes the year she had nine UTIs. “You’re at the edge of your seat waiting for it to happen again. … I read all the [internet] comments — what people had tried, what their grandmothers had done, but it wasn’t conclusive at all. It astounds me that there’s no better way.”

Juliet eventually went to a urologist, who put her on a prophylactic antibiotic for two months. But many women get stuck in that same waiting period Juliet found herself in: Unless the pain is too severe, many doctors advise otherwise healthy people to wait and see before taking antibiotics, as sometimes the body can clear an infection on its own. It’s during this window that people start doing desperate things to avoid a full-blown UTI. A sleepless night’s reading of subreddits dedicated to UTIs led me to people who said they’d tried apple cider vinegar, olive leaf extract, boric acid, sodium citrate, anti-fungal herbs, large doses of vitamins and minerals, pau d’arco, uva-ursi, colloidal silver, grapefruit seed extract, and a host of other supplements that are untested, and also, unregulated.

Yet once you’ve tried something, and it works, you stick with it, often whether it has the blessing of scientific evidence or not. Recently, Juliet got a UTI again — her first in four years — while visiting a small town where she couldn’t get her go-to home remedies, D-mannose and oregano oil. “In desperation, I actually ate an entire bowl of oregano,” said Juliet. She laughs about it now, but the infection ended up traveling to her kidneys. “Until you’ve had a UTI, you don’t realize how many people are chronic sufferers. … It’s such a horrible feeling, and people who don’t have them don’t understand what you’re going through.”

The definition of recurrent UTIs is two within a six month period, or three in a year, said Dr. Kimberly Cooper, a urologist at Columbia University Medical Center in New York. If the UTIs keep coming back this often, the patient should be referred to a specialist for more thorough checks, but the health-care system isn’t necessarily set up to ensure this happens. “Many doctors are very short on time. It’s a lot easier to give somebody an antibiotic than to have [a longer] discussion,” said Cooper, adding that many non-specialists may not know enough about UTIs, or they’re not comfortable talking about it.

As a urologist, Cooper is keen to help patients get to the bottom of their problem. This starts with ensuring there’s nothing anatomically wrong, before looking at behaviors and supplements. “Although there is no scientific data that proves that behavioral interventions work, I can tell you anecdotally in my practice it makes a big difference for a lot of patients,” she said, pointing out that some women don’t drink enough water and go too long between bathroom breaks.

Doctors often can’t or won’t recommend supplements due to lack of hard evidence, which means they usually stick to behavioral suggestions that sufferers will have heard a million times, like “wipe front to back” and “pee after sex.” But some supplements do get Cooper’s approval. “I am a big advocate of cranberry supplements on a daily basis,” she said. The studies on cranberry are mixed, because there are so many products available and not all of them work. Cranberry supplements often don’t have enough of the active ingredient proanthocyanidin — you need to take 36 milligrams for it to be effective. “There are also patients who swear by d-mannose. As with cranberry, there’s a lot of mixed [scientific] results, but anecdotally if it works for the patient, I think that’s terrific,” said Cooper.

The problem is that it’s not always clear what, precisely, is causing the recurrent UTI. Because there isn’t always one culprit; sometimes, UTI-like symptoms are caused by other things, such as muscle problems in the area, hormone imbalances, or when frequent antibiotic use has messed up the body’s microbiome. “The pelvis contains three different systems — bladder, uterus or prostate, and colon. There could be multiple things happening which contribute to those symptoms,” said Dr. Rachel Gelman, a physical therapist at the Pelvic Health and Rehabilitation Center in San Francisco.

While Gelman understands the urge to reach out to fellow sufferers to find something that might work, she warns against trying supplements indiscriminately. “In today’s culture we are obsessed with the one pill — the one thing that can cure everything,” she said. “But the body is a lot more complicated than that.” Usually there’s more than one thing going on, which means the problems can be tricky to identify. Gelman recommends finding a doctor who wants to help, and be prepared to endure some trial and error. “It will need some detective work,” she added.

In the end, I’ve been one of the lucky ones. Antibiotics have worked on my acute UTIs, and while not everything I tried worked, the alternative remedies I’ve landed on seem to be reducing the number of recurrences. (Maybe it’s a placebo, but the thing about placebos is that they often work.) Since starting a strict regimen of d-mannose and some heavy-duty probiotics, I haven’t had a UTI in over six months. I also follow all the conventional advice, and take a multivitamin for good measure. I have no hard evidence that any of it is actually working, but what I know is that I’m doing a lot better. You need a hefty dose of skepticism when venturing out on the internet for medical advice, but I’ve been surprised to learn just how much of that advice aligns with promising scientific discovery. No doctor has ever mentioned any of this to me — it all came from the backchannel.

The Wild, Necessary World of Online Advice for UTI Pain