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This month, the NHS website finally recognised chronic UTIs as a condition after years of campaigning from the Chronic Urinary Tract Infection Campaign (CUTIC) and Bladder Health UK. PRUDE spoke to three women about why the NHS hasn’t gone far enough.
For many, the pain of a urinary tract infection (UTI) is second to none. The feeling of peeing tiny but deadly knives, emergency trips to grotty public toilets with unlockable doors. Not to mention the seawater taste of a cystitis solution, given out to patients to relieve symptoms.
UTIs are common among people with vaginas, and sex often has a role in causing them, with bacteria travelling into the urethra from the anus or other outside sources. Because of this, women are told to pee immediately after sex. It is drilled into them that by doing this, they will avoid the pain of the dreaded UTI by dispelling any bacteria from the urinary tract.
While all genders can experience UTIs, urethras are shorter in those with vulvas, so the distance for bacteria to travel up the urinary tract is less than for those with penises – making those with vaginas much more susceptible.
Although painful, UTIs are, for most, over in a matter of days with the help of a short course of antibiotics. However, chronic UTI sufferers must live with the daily effects of this untreatable condition, all the while being gaslighted by doctors who often don’t understand the condition.
“Within a day or two [of having a UTI] I’d be throwing up, not being able to get out of bed, hallucinating,” says Helena*, a 23-year-old graphic designer. Helena is one of 1.7 million women aged 18+ in the UK who suffer from chronic UTIs. Despite this, the condition has only been recognised by the NHS website two weeks ago.
For some, a chronic UTI can mean regularly having infections – up to twice a month – while for others it can be ongoing, lasting for years at a time.
“My first ever UTI was when I was like six-months-old,” Helena says. “I got them when I was a baby quite regularly, and then I didn’t have one for years until I was 16.”
The UTIs in her teenage years often progressed quickly, starting with the extreme symptoms of peeing blood, back pain and a high temperature. Within days she would be throwing up and hallucinating with a particularly bad kidney infection.
In her earlier twenties she even had to rely on her boyfriend to look after her. “I had to depend on him to do basic things. I was only 22,” she says. “He would give me paracetamol, help me into a bath and try to make me eat as well because I had no appetite.” On top of this, her partner would often feel guilt, as sex caused her to develop a new UTI every time.
Her worst UTI experience was when one went untreated and developed into septicaemia. “I genuinely don’t remember that first week of [being in hospital],” she says. “I thought I was in a room by myself, I was seeing weird things, I thought the nurses were playing table tennis and I was in a leisure centre.”
“They progressed so quickly because they were slipping through the cracks — doctors weren’t getting [me] antibiotics quick enough. Every single time I went to the GP to get it tested, it came back saying I didn’t have a UTI.”
This is an all too common danger for patients: the Chronic Urinary Tract Infection Campaign (CUTIC)’s website reported that the MSU culture test (one of the most common tests for UTIs that tests the mid-stream urine) “misses up to 90 per cent of patients with a chronic UTI”. Not only does this mean prolonged discomfort for the patient, but it can make the UTI a lot more serious.
CUTIC Director Carolyn Andrew says: “Doctors don’t know what to do. They see a woman who is distressed, they do the tests, which come back negative, so they say, ‘you’re very upset by it. Let me give you something to change that.’ We even have people who are being put on antidepressants. There’s no recognition of the fact that they have an infection embedded into the wall of the bladder. It’s the old ‘hysterical woman syndrome’.”
Thanks to CUTIC and Bladder Health UK’s campaigning, as of last week, the NHS website now mentions on the cystitis page that regular UTIs can be a sign of a “chronic bladder infection” which may not show up in tests, or be improved by antibiotics.
Carolyn adds, “The recognition is really vital because now, GPs will not turn around to women who say, ‘I think I might have a chronic UTI’ and say they don’t exist. Because that’s what’s been happening.”
She suffered from UTIs on-and-off for 10 years. “I went through the mill of having been told that I had interstitial cystitis and I should accept that it was incurable.”
Medications gave her “horrendous” side effects: blurred vision, dry skin and mouth, even causing her to have a fit on one occasion. Carolyn begged her GP to do something. He gave her a low dose of antidepressants which helped relieve the pain, and after three-and-a-half years of high dosage antibiotic treatment prescribed by a chronic UTI specialist, she was eventually able to get her life back together.
During this process, the lower urinary tract symptom clinic at the Whittington hospital was in danger of being closed, so Carolyn and other local sufferers got together to form a campaign group which eventually saved it.
But the group didn’t stop there. They set up a not-for-profit group which became CUTIC, with the mission of helping those suffering from chronic urine infections through the information on their website, and continued campaigns.
Long-time UTI sufferer Christina Warner agrees the NHS still has a long way to go, particularly in how they view chronic UTIs. She says, “The number of times I’ve described to doctors, ‘Yeah, I’m passing out when I go for a wee because the pain is so intense.’ They’ll be like ‘oh, just put a hot water bottle down there, take some cranberry juice. But recurring UTIs is above and beyond the worst pain I’ve ever had. I’ve been begging to just die.”
She tells PRUDE there is a preconceived idea that UTIs are caused by sex, even in the medical community.
“I found with male doctors, they will want to know a lot about your sexual history when inquiring about a UTI.” she says. “But if I’m a teenager or a young girl, it has nothing to do with sexual activity.”
Christina is also one of many who has struggled with the limited medication available on the NHS – she was put on antibiotics for a full year as a preventative measure.
“The NHS should definitely advise the full spectrum of remedies available,” she explains. “Antibiotics are there to cure a bacterial infection, so why are we being prescribed them to prevent it?”
For some, like Carolyn, ongoing UTI pain gradually went away over time, but not without a long and painful battle. Others aren’t so lucky.
“I know that I’ve got scarring inside my bladder from the infections,” says Christina, “But knowing some people have come forward and said, ‘I’ve lost my grandma, my sister, my mom to bladder cancer because she had recurring UTIs. I just think to myself ‘God that could have been me.’”
For more information on chronic UTIs, visit CUTIC.
*Names have been changed to protect identity.
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