In a promising move forward for many sufferers, chronic UTIs have been recognised by the National Institute for Health and Care Excellence (NICE) as a distinct condition, validating the pain of many.
But the condition remains a huge symptom of the gender health gap, due to the higher proportion of women suffering from chronic UTIs. While bodies of all genders suffer from urinary tract infections, women get them up to 30 times more often than men do.
On top of this inequality, those that seek treatment are faced with ineffective testing and medical misogyny. The situation has been previously described as a “cultural normalisation of female pain”.
“UTI affects mainly females and as such is seen as a ‘female condition’ and is frequently dismissed as ‘hysteria’, ‘imagination’ or merely ‘malingering’,” Carolyn Andrew, director of patient advocacy group Chronic Urinary Tract Infection Campaign (CUTIC) tells GLAMOUR.
“Test results can show negative for many patients and current medical practice does not look further than the outdated, ineffective tests which are now over 70 years old.”
It’s been announced that we’ll soon be given more access to UTI treatment over the counter, without the need for a GP appointment, due to strain on the NHS. Also, the NICE review has acknowledged issues with testing, diagnosis and treatment of chronic UTIs. But we deserve more, and better.
GLAMOUR spoke to Sarah, who is in her late 30s but has been suffering from UTIs since childhood, and chronic infections for the last two years.
I have suffered from recurrent UTIs since I was 5 years old.
I remember as a child, my mum had got me ready for bed and I'd been complaining of tummy pain and my belly was very swollen. I also felt shivery and nauseous. I vividly remember going to the loo before bed and the pain was horrific: it burned like hell fire when I passed urine.
I was so young, it was incredibly hard to eloquently explain to my mum what was wrong, so all I could muster at this age was: “Mum I've had a hot wee and it really hurts.”
My condition eventually became chronic in June 2021 – for the first time in my life, my UTI symptoms did not respond to the antibiotic treatment, and I was plunged into a living dystopia of relentless agony and suffering.
What it's like to be a victim of the gender health gap.
The symptoms were endless, including shivering, fever, vomiting, deep internal pain that felt like someone scraping down an exposed nerve and pelvic pain that felt like I was prolapsing.
From the age of five, I have felt medical misogyny keenly in the way I’ve been treated for my UTIs. The first male doctor I visited with symptoms trivialised my condition and sent me away with a recommendation to drink lemon barley water and to use Canesten cream!
Obviously my symptoms did not subside, and I was back and forth to the doctors as a result. In the past, doctors have refused to give me antibiotics, claiming that the dipstick test was negative, despite me sobbing in agony and begging them to listen to my symptoms.
Edward Kass, the man that pioneered the dipstick test, told the NHS at the time that the test was not fit for purpose in detecting lower UTIs, yet his advice was not heeded. This is yet another form of medical misogyny at play – his advice is ignored because women's health and pain do not matter.
Nearly every doctor I saw was male and they treated me in a condescending way, often trivialising my pain or gaslighting me into thinking it's all in my head. I’ve never experienced compassion or support with my chronic UTI, instead you are treated with derision and made to feel like a burden and cruelly dismissed – like you are worthless.
Often, I would try and vocalise my pain and begin explaining my symptoms, only to be rudely interrupted and told my dipstick was negative and told to go home and take paracetamol – which has no effect on the pain whatsoever – a tube of smarties would have the same impact on the pain.
There’s no denying the bias and gender inequality in how UTIs are treated. My father suffered a UTI many years ago and was instantly granted a two-week course of antibiotics without any form of testing – he was believed without question. Yet when I contacted my doctor with the same issue, I was dismissed and met with one barrier after another and often not granted the medication I desperately needed.
As a woman, I am also not granted the same quantity of antibiotics. Most women are limited to a three-day course, which is simply a drop in the ocean and not sufficient to clear the infection completely, hence causing re-occurrence.
Many doctors have also tried to convince me that my symptoms could be STI related, but that simply was not the case, and it is not the case for the majority of us. This is yet another way the medical profession gaslights you, trying to manipulate you into believing that you did something wrong, that you caused your own pain. It leaves me incandescent with rage. I hate that we are so powerless against this deeply entrenched misogyny that is clearly still rife within the NHS.
The medical profession is incredibly biased when it comes to treating women, and we are made to feel like second class citizens. We are stereotyped as being fragile, soft, hysterical – and not listened to or treated with the same respect and attention as our male counterparts.
It is barbaric that a condition as painful and debilitating as this is so horrifically trivialised. I strongly feel that if this condition affected men and women equally, there would have been a cure years ago.
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I was referred to the pain clinic in my local NHS trust, and attended an appointment last year. The male pain specialist referred to my reproductive region as a swamp of nerves and told me to “grieve for my old life and accept my new life with all its limitations.” He trivialised my condition and condescendingly suggested that I take up crocheting and other hobbies I could pursue from the sofa, as the pain was so bad I was housebound. He offered little in terms of hope and simply made me feel completely futile.
Their utter negligence and lack of sensitivity to my emotional state led me to feel suicidal. I will never forget the cold, harsh words that came spouting from his condescending mouth. It's so cruel and unnecessary. If any of these male doctors were to experience the pain of this condition, I truly believe they would hang their heads in shame at how deeply they have let us down.
Before my illness became chronic, I had a zest for life and tried to live as full a life as possible. I was a social butterfly, loved travelling and put my all into growing my career and relationship.
Sadly, my life is now unrecognisable: my relationship ended, I no longer am able to socialise from the relentless pain, so spend much of my time isolated and housebound. I have had to step away from my career and pursue more flexible working roles, as I physically can no longer do the job I love. People underestimate the true cost of relentless pain – it wears you down and then impacts your mental health.
Since becoming chronically ill, I have felt my own mental health deteriorate. I look out of the window and see people running, laughing, enjoying life to the full and I feel completely alienated from society. My life no longer has colour, happiness or excitement. Instead, it is filled with constant alarms to take various medications and supplements, appointments and pain.
I miss going to the gym and having the freedom to be spontaneous and just jet off for the weekend. I can no longer make plans – thus have nothing to look forward to or nothing to motivate me.
For things to improve for us, medical guidelines need to change, and the use of dipstick testing as the Gold Standard of testing for UTIs must be banned, as it has been proven that they miss at least 60% of infections.
Medical schools also need to ensure that chronic UTIs are placed on the curriculum, and a good chunk of time is allocated to learning and researching this condition, so that young doctors coming through the education system are better equipped to support UTI sufferers.
The NHS has overlooked and underfunded women’s health for years. This condition needs extensive research, so that scientists can go on to hopefully identify causation and then find a pain medication/ treatment to either manage or cure this condition effectively.
Above all, the Government needs to approve more funding into research and support organisations such as CUTIC in their campaigns. And there needs to be a culture shift in the NHS – medical misogyny needs stamping out.
As a chronic UTI sufferer, all I want is my life back: we shouldn't have to live such an unfulfilled life with the extreme limitations we face.
