Stories

The secret sting of cystitis

Cystitis is more than just an uncomfortable bladder infection. Sufferers also endure sexism, shame, and stigma from medical professionals. Agnes Arnold-Forster explores how these issues in modern medicine meet through her own experience, and how victims find solace in each other.

Words by Dr Agnes Arnold-Forster|artwork by Mari Fouz

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Mixed media collage of a woman holding the torso of a female statue as she sheds a tear.  In the background behind the woman is a bed of leaves.  The image has been created from colourised black and white assets using orange yellow and green tones, and sits on a teal background.
The secret sting of cystitis. © Mari Fouz for Wellcome Collection.

The first signs of cystitis are imperceptible unless, after many years of repeated infection, you are hypervigilant of your own body and its need to pee. For me the initial indicator is a subtle feeling of dissatisfaction after going to the toilet, as though you haven’t quite completed the task you set out to do. In my experience, by the time it hurts, I’ve left it too late.

I call my GP to make an appointment. There’s the inevitable, “Have you tried cranberry juice?” and, “Mild discomfort can usually be cleared up by over-the-counter remedies.” I have had cystitis every three to six months since I was fifteen. By now I know what does and does not work.

I spend an embarrassing few minutes trying to pee in a plastic cup in a waiting-room toilet before smuggling the vial past prying, other-patient eyes back to the doctor’s office. They test it and confirm that I have successfully identified my condition.

After all these years, I not only know that I need antibiotics, but I know which type. The one that they initially try to prescribe makes me sick, the other is ineffective. I leave with the correct prescription in hand.

This is, however, my best-case scenario. It’s what happens when I’m at home when I feel the first twinge, when I can get a timely appointment, and when I have encountered a semi-sympathetic doctor. This best-case scenario is, however, rare.

Instead, cystitis – for me and many others – exposes the flaws in the doctor-patient relationship and reveals how difficult it is for patients, and particularly women, trans and non-binary people, to be taken seriously on the subject of their own bodies.

Mixed media collage of a Greco-Roman figure of a woman being examined by a doctor.  The woman is sitting, partly cloaked, and showing part of her torso as she leans backwards.  On her lap is a large flower. The image has been created from colourised black and white assets using orange, blue and green tones, and sits on a yellow background where the floor has been painted with watercolour.
The secret sting of cystitis. © Mari Fouz for Wellcome Collection.

“Cystitis exposes the flaws in the doctor-patient relationship and reveals how difficult it is for patients to be taken seriously on the subject of their own bodies.”

Misconceptions of mild inconvenience

Cystitis is a common urinary tract infection (UTI) – inflammation of the bladder usually caused by bacteria. A quarter of women in the UK will get one at some point in their life. Many of those will have multiple, and some will have recurrent or chronic afflictions.

Despite its prevalence, cystitis is a slippery beast. It can be difficult to accurately diagnose, and many people will spend frustrating hours at the GP insisting on a biological cause for their pain and discomfort, and demanding appropriate care and attention.

It also comes in a variety of forms. From the transient infection, treated by antibiotics, to the long-standing suffering caused by interstitial cystitis – a chronic condition that has the same symptoms as cystitis but without identifiable infection. Despite its mundanity – or perhaps because of it – cystitis is a place where multiple issues of modern medicine meet.

The everyday nature of cystitis means that doctors can struggle to take it seriously. They subconsciously slot it into the category of “mild inconvenience” rather than the chronic, painful and life-altering affliction it can be.

When I sought out people happy to talk about their experience of cystitis via social media, I was inundated with responses. My inbox filled with stories of intense pain, deep shame and professional indifference.

Lottie told me about her experience with interstitial cystitis. She has had it for three years: “I’ve had such an awful time with doctors dismissing my pain – it took SO long to even get a referral to a urologist.” After going to her GP over 20 times in less than a year, she was finally diagnosed and underwent surgery to alleviate her symptoms. However, even after being referred, she still had to contend with medical mistrust, with doctors telling her it was all “in her head”.

Mixed media collage of three naked women inspecting a large white flower.  The image has been created using a mix of assets and uses white, yellow, red and green tones, sitting on a blood orange background.
The secret sting of cystitis. © Mari Fouz for Wellcome Collection.

“When I sought out people happy to talk about their experience of cystitis, I was inundated with stories of intense pain, deep shame and professional indifference.”

Patients are made to feel that they are in some way to blame for repeated infections and chastised for not peeing after sex.

The honeymooner’s disease

Cystitis often acts in tandem with other maladies seen as peculiarly ‘female’. It works in shifts, taking turns with yeast infections to make people’s lives miserable. It can be exacerbated by hormonal birth control and often interacts weirdly with pregnancy and the menstrual cycle. There is also something gender-inflected in the way that doctors dismiss the self-diagnosis of those who come seeking their help.

When Mollie went to see her GP, she offered up her own assessment: “I have cystitis.” The doctor responded, “It is not for you to diagnose.” The GP scolded her for seeking antibiotics. I’ve experienced similar hostile gatekeeping around the prescriptions I know I need.

Cystitis is simultaneously a medical condition – one that can only be known and identified by trained healthcare professional – and a minor inconvenience, to be treated at home and without taking up scarce medical resources. Like so many medical things associated with genitals, it also carries with it the trappings of shame and stigma.

It is the ‘honeymooner’s’ or ‘bride’s’ disease – something acquired during sex, if not from sex. Doctors associate cystitis with promiscuity. Patients are made to feel that they are in some way to blame for repeated infections and chastised for not peeing after sex (a method that doesn’t even always work).

Mixed media collage of four women dancing whilst holding their long dresses away from their feet.  Two of the figures are dancing on a large flowers, whilst a third central figure is standing inside a large bowl.  The image has been created from colourised black and white assets using orange, blue, yellow and purple, and sits on a green background.
The secret sting of cystitis. © Mari Fouz for Wellcome Collection.

“Sufferers find solace in each other, sharing tips, tricks, and the names of compassionate doctors and nurses.”

Finding solace in each other

As with other maladies that predominantly affect women, trans men and non-binary people, sufferers seek support from those outside the medical professions and look for non-traditional remedies – staying away from GPs even when in severe pain.

Sophie described how, in her second year of university, cystitis “ruined her life”. She had eight bouts in the span of six months, and after terrible experiences at the GP and in A&E, tried something else. She went off her birth control and started taking a plant-based treatment, D-mannose, which seemed to work.

Sufferers find solace in each other, sharing tips, tricks, and the names of compassionate doctors and nurses. This informal network does, of course, mean that many people will be left in the dark. Steph said in response to my call for experiences: “It’s good to know that I’m not alone.”

Cystitis is many things. It is painful, embarrassing, frustrating and isolating. It is also exhausting. So many people I spoke to attested to the wearying war of attrition they had fought over the past months and years.

Chronic and recurrent conditions should not be an endless battle, but since they are, we need allies. And in my experience, the best allies are not doctors or nurses, but each other. Other people with similar conditions, seeking similar solutions.

About the contributors

Photograph of Dr Agnes Arnold-Forster

Dr Agnes Arnold-Forster

Author

@agnesjuliet on Twitter

Dr Agnes Arnold-Forster is a writer and historian of healthcare, work and the emotions. She is the author of ‘The Cancer Problem’ and is currently working on a Wellcome Trust-funded project called ‘Healthy Scepticism’, which explores mistrust in medicine both past and present.

Photograph of Mari Fouz

Mari Fouz

Illustrator

Mari Fouz is an illustrator and graphic designer from Barcelona. Having worked for many years in the newspaper graphic-design sector, Mari is currently dedicated to illustration and teaching. Mari works with both collage and traditional illustration techniques, and her work is mostly published in press and editorial. Mari has been published in the Guardian, the Washington Post, the Wall Street Journal and Time, among many others.