The UTI Documentary
The UTI Documentary is a Healthy Scepticism film being made by Agnes Arnold-Forster, Rita Maria Conry, and Gemma Duncan. It will be released during the Healthy Scepticism film festival in September.
The UTI Documentary started life as a collaboration between Agnes and Rita, who have been friends since school. In twenty twenty, they set up an instagram page called Self.Xamination, telling feminist stories about medicine, both past and present. In early twenty twenty one, they started creating a film that not only tells the story of women's experiences of UTIs, but also advocates for healthcare change. Gemma joined the project soon after.
Having lived with chronic and recurrent UTIs themselves, Agnes, Rita and Gemma wanted to combine their expertise in story telling, women's health, and filmmaking to reveal the debilitating nature of UTIs, shine a light on the current outdated testing and treatment guidelines, and challenge the tendency of healthcare to see women as unreliable witnesses to their own bodies.
Meet The Team
“I have had cystitis for most of my adult life. This experience has been an education in what it is like to navigate a medical world that is regularly and repeatedly indifferent or hostile to women. For me and so many others, UTIs expose the flaws in the doctor-patient relationship and reveals how difficult it is for people, and particularly women, trans and non-binary people, to be taken seriously on the subject of their own bodies. And, as a historian of gender and healthcare, this film is not just a personal project, but a professional and intellectual one too.”
“I consider myself one of the more fortunate in that I was able to find treatment for a chronic UTI after three and a half years of muddled diagnoses and GPs cancelling my appointments. But three and a half years was enough to completely put a pin in every element of my life. I am completely in awe of women who suffer CUTI and still hold their lives together.”
“In the summer of twenty twenty, I was diagnosed with a chronic UTI after thirteen years of having symptoms but being told there was nothing wrong with me. I understand first hand the psychological and physical impact of not being listened to by medical professionals while living with chronic pain. There is a huge gap in our understanding of UTIs, including the outdated testing. I want this film to reach enough people that the perception and treatment of UTIs changes for the better.”
Meet The Participants
Joanne experienced her first UTI at 17 years old. The symptoms continued for eight years whilst the tests at the doctors came back negative for infection. After a cystoscopy, urologists found inflammation in Joanne’s bladder and diagnosed her with Interstitial Cystitis (IC), a diagnosis of exclusion and deemed incurable. She underwent hydrodistention procedures, one of which gave her sepsis and she had to spend a week in hospital, coming close to death from the overwhelming infection. Feeling there no hope to ending her chronic pain, she considered suicide several times. At the end of the road with primary care, Joanne desperately looked for her own answers and found a private UTI clinic in London. She has been in treatment for four years with this clinic and has seen her symptoms largely disappear. Joanne started an Embedded/Chronic UTI support group on Facebook, which currently stands at 9.7k members, and is growing as more and more people feel failed or marginalised by primary care. Phoebe and Gerogiana have since come on board as Admins.
Phoebe’s first UTI she ever had became chronic when the one-fits-all standardised treatment prescribed to her failed to get rid of the infection. Much like Joanne, IC was a diagnosis Phoebe was given. Treatment options were instillations which she underwent every 3 months for several years. This didn’t resolve her infection and often made her symptoms worse. Morphine was offered to her as a painkiller and was told by NHS specialists that there was nothing else they could do. It was suggested by a nurse that Phoebe should get pregnant as a solution to her Chronic UTI. She is now in treatment at a private UTI clinic in London that recognises Chronic UTI as an infection that has embedded into the lining of her bladder.
When Sophie had a succession of UTIs at university, the responses she received from doctors was that UTI was just part of life for a sexually active student. “Drink more water”, “pee after sex”, and “drink cranberry juice” is all well meaning but overly-simplistic advice that Sophie has heard many times. But it wasn’t until she sought treatment in France, her country of birth, that her entire medical history was taken into account and she was treated beyond this rudimentary layer of guidance. She now takes D-Mannose as a preventative and had not experienced UTI for at least a year - a relatively lengthy time for chronic or recurrent sufferers.
Filmmaker Rime has suffered UTIs since she was a young girl and believes doctors are flippant about issues that predominantly affect women. She feels that the dominant associations between UTI and sex creates stigma around the illness, despite sexual activity being only one of many causes of UTI. Over the years she has received so much debunked advice that she now has a large distrust of doctors and primary care. After all this time living with UTI, she knows exactly which antibiotic and dosage works for her, yet often has to convince general practitioners of her knowledge about her own body.
Georgiana has experienced gas-lighting from primary care to the point where she doubted her own Chronic UTI symptoms and experienced mental health distress as a result. Dipstick analysis will miss at least 60% of UTIs, and mid stream urine cultures will not pick up Chronic UTIs 90% of the time. So for three years Georgiana was told by her doctors that nothing was wrong with her, despite having a raging infection which left her without hope, unable to work and feeling suicidal. Georgiana experienced these symptoms until she attended a private UTI clinic in London, which she is in ongoing care with.
Daughter to Jill, both of whom have a partial duplex system in their kidneys, meaning they are both particularly prone to infections of the urinary tract. During Liz’s teenage years, general practitioners dismissed her infections as superficial and as a common ‘women’s problem’ to live with. It wasn’t until she was hospitalised with an infection that she was told how serious a UTI can be. Ongoing visits to her GP and to walk-in centres felt futile as she was seen by different doctors each time, who often did not take her medical history into account, treated each bout of symptoms as a new infection and sent her away with a short course of antibiotics which never fully got rid of the infection. After being hospitalised Liz was finally given a long enough dose of antibiotics to get rid of a persistent UTI.
During Jill’s fifty years of lived-experience with UTI, she has not seen a change in UTI testing or treatment, and believes the one-size-fits-all approach to UTI treatment is inadequate and problematic. As a result of the menopause and hormonal changes, women also become more prone to UTIs, and Jill feels like her symptoms have been dismissed as commonplace and therefore not taken seriously by doctors and not taken seriously by doctor and health professionals. She has had to insist antibiotics were given to her multiple times and has been told it was normal to see bright red blood in her urine with a UTI. The first time she ever felt listened to properly was when she switched to private care ten years ago, where the consultants were sympathetic and she was finally offered a cystoscopy.