The key facts
- 29-year-old Adrienne from London spent two years seeking a diagnosis of chronic UTI; she was wrongly suspected of having bowel cancer, Crohn's disease and an STI.
- Experts estimate up to 1.7 million women affected in the UK; men and children also suffer.
- Doctors support openness but warn about harmful 'hacks', such as baths with disinfectant.
Personal experience and stigma
Adrienne, 29, who works in digital marketing in London, has lived with a chronic urinary tract infection (UTI) for almost five years, and it took two years to get a diagnosis. During that time she was wrongly told she might have bowel cancer, Crohn's disease, or that a partner might have passed on a sexually transmitted infection. She talks about her illness to her roughly 8,000 TikTok followers: 'It all started with one UTI in 2022 and turned into an exhausting cycle,' she says, noting that the illness cost her a full-time job, relationships and a social life. On her worst days, she says, there is 'agonising abdominal pain, shooting, cramping', and urination feels 'like lava'.
Scale of the problem and diagnostic difficulties
Chronic UTI has no official medical definition; it is an infection with persisting symptoms even after a standard course of antibiotics, caused by bacteria penetrating the bladder lining. Experts estimate that up to 1.7 million women in the UK may suffer from it; men and children are also affected. Professor Chris Harding, a urologist at Newcastle upon Tyne Hospitals NHS Foundation Trust, notes that with the gold standard of diagnosis — a urine test — 'false negatives' are often encountered. Magda Kujawa, a urologist at Stockport NHS Foundation Trust, adds that there is significant overlap between chronic UTIs, interstitial cystitis, chronic pelvic pain and endometriosis. Both experts believe doctors should listen carefully to the patient's history. Adrienne says she felt 'brushed off' by doctors, receiving only advice on hygiene and fluid intake.
Other stories and the role of social media
Laura von Mullen, 26, from Kent, who also has a diagnosis of chronic UTI, runs a TikTok about her experience. She says the symptoms affected her university studies and work 'very strongly'; she now works remotely in SMM. Besides urological symptoms, she experiences palpitations and panic attacks. 'People don't understand: they think it's just a UTI and it will pass in three days, but I've had it for two years,' she says. She also encounters misconceptions: 'People ask: who did you sleep with? Even though that's not the case.' A search on TikTok and Instagram shows hundreds of posts by women of different ages about living with recurrent and chronic UTIs. Adrienne notes that she was nervous at first, but has now found a community where people share advice, and calls it an 'affirming' experience. Harding agrees: 'The more we talk about these conditions, the more people will go to the right specialists and get the correct treatment.'
Doctors' warnings
Harding and Kujawa warn that, despite the benefits of social media, there is a risk of encountering misinformation and harmful advice, including 'hacks' that can cause harm. Kujawa gives an example: 'I have seen women sitting in baths with disinfectant because they were convinced they were dirty and therefore getting infected. And it only made things ten times worse.' Adrienne adds that stigma around the causes of UTIs persists, and it all comes down to education: 'We are not taught about them at school.' Both women's symptoms are improving, but, in their words, it is 'a long road to recovery'.
Adrianne says her chronic UTI has impacted her physically and mentally
Laura says not knowing when or how she would get better left her feeling
