Adrianne, a 29-year-old digital marketer in London, has spent nearly five years living with a chronic urinary tract infection (UTI) - and two of those years just trying to get someone to diagnose it. Along the way, she was told it might be colon cancer, Crohn's disease, or, in a particularly helpful twist, that her partner must be cheating and had passed on an STI. "The impact goes far beyond what people understand - we're talking about pain, urgency, sleepless nights and missing out on your life," she tells her roughly 8,000 TikTok followers.
What began as a single UTI in 2022 morphed into a debilitating cycle. "It has completely stripped me of everything: being able to work properly, my relationships, my friendships, going out, being able to have a normal social life," she says. She was eventually diagnosed privately with a chronic UTI - a condition experts estimate could affect up to 1.7 million women in the UK. Men and children are affected too, because bacteria are equal-opportunity inconveniences.
Adrianne is far from alone in taking to social media to fight the stigma. A quick scroll through TikTok or Instagram surfaces hundreds of posts from women of all ages describing the reality of recurrent and chronic UTIs. "I felt incredibly nervous to put myself out there, but there's now this community of people who can share tips with each other, and understand each other," she says, noting the "really positive response" her posts have received.
A chronic UTI has no official medical definition, which is convenient for anyone hoping to avoid pinning it down. It's an infection with persistent symptoms even after a standard course of antibiotics, often caused by bacteria entering the bladder lining. At its worst, Adrianne describes "the most excruciating abdominal pain, like shooting, spasming pain." And the bathroom situation? "You need a wee all the time, but it's like weeing lava." She adds: "It's a very claustrophobic feeling, of I'm trapped in this body that is betraying me and is in pain." Even on a good day, leaving the house is a gamble on whether a flare-up will ruin the outing.
Diagnosis is its own obstacle course. Sending a urine sample to the lab remains the gold standard, but "false negatives" can often occur, says Professor Chris Harding, a consultant urologist at Newcastle upon Tyne Hospitals NHS Foundation Trust. There's also significant crossover between chronic UTIs and conditions like painful bladder syndrome, chronic pelvic pain and endometriosis, says Magda Kujawa, a consultant urologist at Stockport NHS Foundation Trust - because why have one confusing diagnosis when you could have several?
Adrianne says she felt "dismissed" by doctors while seeking a diagnosis, and frustrated at repeatedly being given advice about hygiene and hydration while her symptoms persisted. Both experts agree health professionals should listen to the patient's story to determine whether symptoms amount to a recurrent or chronic condition - or something else entirely. A radical notion: listening.
Since she started posting, Adrianne has received messages from young women worried they are "dirty" or "not taking care of themselves," or that there is "something wrong with them." "There's definitely still a lot of stigma around why people get them (UTIs), and it all just comes back to education. We're not taught about them at school," she says.
Laura Von Müllen, 26, also documents her chronic UTI on TikTok. Her symptoms "really badly" impacted university and became particularly difficult when she started working; she now works remotely from Kent doing social media management. Beyond urinary symptoms, she experiences heart palpitations and panic attacks. "People don't understand, they think it's just a UTI and that it'll clear within three days, but I've still got mine two years later," she says. She's also fielded the classic: "People have said to me: who have you been sleeping with then? When that's not the case."
Adrianne and Laura hope more women sharing their experiences will demystify the condition. Harding agrees, adding that "the more we can talk about these conditions, the more people will present to appropriate specialists and get the right treatment." But he and Kujawa warn that social media, while useful, carries risks of misinformation and harmful advice - including "hacks" that could make things worse. "I've seen women on social media sitting in baths of disinfectant, all because they were convinced that they were dirty, and that's why they were getting infections. And actually, that just made things ten times worse," Kujawa says.
While Adrianne and Laura's symptoms are improving, they describe it as a "long road to recovery." Meanwhile, chronic UTIs have also made an MP "feel like a drug user," and a new test could cut wait times for UTI diagnosis - two developments that suggest the establishment might finally be catching up to TikTok.