Although over 60 percent of women and other people with vaginas will experience a urinary tract infection (UTI) in their lifetime, nearly a quarter of them will be failed by their primary carers, resulting in misdiagnoses, invasive procedures and chronic illnesses.
A short film, The UTI Documentary, created by healthcare historian Dr. Agnes Arnold-Forster, and filmmakers Rita Conry and Gemma Duncan, offers a glimpse into a conversation between women of different ages with lived-experience of chronic and recurrent UTIs.
These include Liz, 30, whose experiences weren’t taken seriously until she was hospitalised and sought medical attention from a private specialist; Sophie, 22, who had back to back UTIs for six months when she was a student and Rime, 28, whose experience of being passed around from GP to A&E and back again has led to a deep distrust in the UK’s healthcare system and spending double the price on prescription for antibiotics purchased online.
Arnold-Forster is unsurprised by their treatment. “I changed my title to ‘Dr.’ at my GP’s office and it made such a big difference,” she says, “which is obviously like a terrible indictment of how doctors treat people normally.”
The main hope for their documentary is to get a conversation going about the difficulties that those living with chronic conditions – namely UTIs – face in the healthcare system. Here, Arnold-Forster and three other chronic UTI sufferers featured in the documentary offer up the advice they would give to themselves at the beginning of their journeys.
FORM YOUR OWN COMMUNITY
Throughout history, Arnold-Forster says that building up communities has been a common way to learn more about and seek support for a chronic illness. “Where mainstream medicine failed, [women] have had to rely on each other,” she says. “Even if that doesn't provide clinical relief, a solution or a cure, at least what it does do is build a support network and emotional community that allows them to cope with something that's otherwise unresolvable.”
Other contributors, like Liz, whose mother Jill also features in the documentary, recommends reaching out to those closest to you. “When I started talking to my friends, my mum and my family about this, I suddenly realised I wasn't alone,’ says Liz. “So just talk, because I think people think it's an embarrassing thing and it's not. It’s private to some extent, but so many of us go through this.”
It was a similar case for Sophie, who found one of her close friends through speaking openly about UTIs. “I was in a women and non-binary students college, so lots of people had UTIs because it’s so common,” she explains. “I'd never really talked to her, but she was saying ‘Oh, my God, I have another UTI’ and I was like, you’ve got to try D-mannose [a dietary supplement thought to ease symptoms].”
NOT ALL ADVICE WORKS
Although most of the advice given by health professionals, like “pee after sex”, “drink more water” or “try cranberry juice” can be beneficial for the odd UTI, it’s relatively useless for chronic sufferers.
Sophie says it puts the responsibility onto those who are suffering: “I don't know which other illnesses you feel like you can avoid just by your own sheer will. Usually no one makes you feel like it's your fault, but with UTIs they definitely do.”
Instead, most women interviewed in the documentary found most of their useful information on antibiotics dosages, supplements and home remedies through forums and other online communities. Liz warns that you have to be selective about what you try out: “A lot of the home remedies may numb the symptoms for a while,” she says. “But they're not clearing up the infection side and that can then lead to chronic UTI.”
TRACK YOUR SYMPTOMS
Rime’s distrust of healthcare professionals has led to being hyper-vigilant about her own UTI symptoms so that she can pre-empt when she will need help without relying on her GP.
“I would say everyone should figure out a pattern in their UTIs. Notice the trends and consistencies, and document when you start experiencing each symptom,” she says. “A lot of it is going to be trial and error, so it’s important, especially because at first, you're going to have to depend on GPs and the medical industry to help you figure out what's gonna work.”
Although there’s no cheat code for making sure your GP takes your chronic UTI seriously, Arnold-Forster says it’s important to be prepared before your appointment.
“The thing to do is to go in armed with evidence to make sure that you know exactly what you're talking about and you can speak in terms that they will understand, even if that means doing a lot of research yourself,” she says. “Another thing that's really crucial is that a lot of people in the UK don't realise that you are allowed to seek a second opinion. If your GP isn't taking you seriously, you are completely entitled to ask to speak to someone else. Just because you're not paying for it doesn't mean that you're not entitled to good care.”
The UTI Documentary will be released as part of the Healthy Scepticism film festival from the 24th to 26th of September.