Life

Why Online UTI and Endometriosis Communities Are a Godsend for Many Women

A woman in pain looking at a computer screen.
Sometimes, the web is the only place women can find validation for their pain.
fizkes/Thinkstock.com

One of the first pieces of medical advice most doctors give is not to Google your symptoms. With a whole host of symptom checkers sponsored by WebMD, AARP, Mayo Clinic and more out there, it’s never been easier for someone with an internet connection and an unexplained tingling in their fingers to diagnose themselves with anything from multiple sclerosis to Parkinson’s. So it makes sense that medical professionals prefer for their patients to avoid working themselves into an existential crisis and just come into the office. But two recent pieces complicate the idea that all digital symptom sleuthing and commiseration is one and the same.

The first, written by Jessica Furseth for The Cut, meditates on the “wild, necessary world of online advice for UTI Pain”—a condition that is overwhelmingly experienced by women, but easily dismissed by doctors as a common, passing phenomenon, even as 20 to 30 percent of women with UTIs get them over and over again, effectively rendering the usual single-course antibiotic treatment useless. “The gendered nature of UTIs isn’t helpful in the quest to find a cure, as women’s pain is often taken less seriously,” Furseth writes. “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.” She explains how online forums like Reddit and blogs like LiveUTIfree.com provide backchannels of advice to fill in the gaps where the medical establishment can’t—or won’t. They provide a space where the pain and anxiety of frequent UTIs are validated and given the weight and sympathy that they deserve.

The second is an interview with Abby Norman, author of “Ask Me About My Uterus: A Quest To Make Doctors Believe in Women’s Pain,” in which she decodes the fraught relationship between doctors and patients that leads to women—and the pain they experience—not being taken seriously. “Ask Me About My Uterus” takes readers through Norman’s journey to finally being diagnosed with endometriosis and the lengths she had to go through to get doctor’s to finally hear her—including dropping out of college to work in a hospital and scouring through medical literature on her lunchtime. And even after that, she still found herself being dismissed by her doctors. “It was downright unacceptable when I tried to assert that I might have information that was relevant, or I wanted to ask for a clarification, or I wanted to reject something they were offering me,” she says. “Those instances would not only impact my ongoing relationship with that doctor, but would end up in my medical record.”

For women in Norman’s shoes—about one in ten women suffer from endometriosis—without access to a medical library, other stories of dismissed pain on online forums can be their first encounter with someone telling them that what they’re experiencing isn’t imaginary. The internet community created by these forums provides a lifeline through the four to ten years it often takes to receive a diagnosis of endometriosis—and for the years of no known cure afterwards. While WebMD and the abundance of resources out there that serve as tools for self-diagnosis can at times do more harm than good, supportive communities like those Furseth and Norman describe can be crucial outlets for needs that aren’t being met by the medical establishment, needs that are overwhelmingly felt by women—especially women of color, whose pain consistently goes unrecognized and untreated by doctors. These forums and the homespun cures they prescribe will and should continue until health professionals recognize their failings and acknowledge that sometimes, the patient may actually know her own body better than the practitioner.