'Betrayed by my body': The taboo health issue women are talking about on social media

"The impact goes far beyond what people understand - we're talking about pain, urgency, sleepless nights and missing out on your life," Adrianne tells her roughly 8,000 followers in a video on TikTok.

For nearly five years, Adrianne has lived with a chronic urinary tract infection (UTI) - a condition it took her two years to get a diagnosis for.

In that time she was wrongly told it was colon cancer, Crohn's disease or even that her partner must have been cheating and had given her a sexually transmitted infection.

What started as one UTI in 2022 became 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," says Adrianne, who works in digital marketing in London.

The 29-year-old was eventually diagnosed privately with a chronic UTI - something experts estimate could affect up to 1.7 million women in the UK, external. Men and children are also affected.

Adrianne is not alone in sharing her story and coping mechanisms on social media to fight the stigma surrounding UTIs.

A quick search on Tiktok or Instagram shows hundreds of posts of women of all ages talking about the reality of living with 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," said Adrianne, saying her posts have had a "really positive response".

"It's very validating."

'Debilitating' symptoms

A chronic UTI, which has no official medical definition, is an infection with persistent symptoms - even after a standard course of antibiotics. It can be caused by bacteria entering the lining of your bladder.

The condition can be unpredictable, but at its worst is "completely debilitating", says Adrianne, describing "the most excruciating abdominal pain, like shooting, spasming pain."

"You need a wee all the time, but it's like weeing lava."

"It's a very claustrophobic feeling, of I'm trapped in this body that is betraying me and is in pain," she adds.

Even on a good day she struggles to leave the house as she worries about having a flare-up.

While sending a urine sample to the lab remains the gold standard to diagnose a UTI, "false negatives" can often occur, says Professor Chris Harding, a consultant urologist at Newcastle upon Tyne Hospitals NHS Foundation Trust.

Another hurdle is the significant crossover between chronic UTIs and other conditions such as painful bladder syndrome, chronic pelvic pain and endometriosis, says Magda Kujawa, a consultant urologist at Stockport NHS Foundation Trust.

Adrianne says she felt "dismissed" by doctors while trying to get a diagnosis, and frustrated at repeatedly being given advice around hygiene and hydration, while her symptoms persisted.

Both experts say health professionals should listen to the patient's story to understand whether symptoms amount to a recurrent or chronic condition or something else entirely.

Since she started posting online, Adrianne has received messages from other young women who worry they are "dirty" and "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 adds.

Demystifying the condition

Laura Von Müllen, 26, has also been diagnosed with a chronic UTI and documents her experience on TikTok.

She says her symptoms "really badly" impacted university, and became particularly difficult to manage when she started working. She now works remotely from Kent doing social media management.

As well as urinary symptoms, Laura says she also 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.

Laura also feels there is still a lot of misconception around UTIs. "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 experience will help 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 both Harding and Kujawa warn that while social media can be a useful resource, there is the risk of coming across misinformation and harmful advice, including "hacks" that could cause more harm.