Millions of women will have suffered a bout of cystitis in their lifetime but for some sufferers these urinary tract infections (UTIs) will persist and become life-changing.
Thousands of women in the UK are living with chronic urinary tract infections that can last for months or even years, an i investigation has found.
Doctors say patients are being let down by testing and treatment failures within primary care prolonging their illness.
Medics say the standard dipstick tests used by GPs can miss up to 50 per cent of infections and that shorter courses of antibiotics, designed to keep antibiotic resistance down, can be inadequate.
If not treated promptly, infections can become chronic, embedded within the wall of the bladder and difficult to treat with short courses of antibiotics, according to experts.
Even though the condition is leaving women bed-bound, dealing with debilitating neurological effects and experiencing pain akin to “a hot kettle mixed in with acid” in the urethra, still they are struggling to find the treatment they need.
i spoke to three women whose lives have been affected by Chronic UTI.
‘Chronic UTI left me bed bound and I was told it was in my head’
Pheobe Allen, 28, lives in London. She has dealt with the symptoms of chronic UTI since the age of 18.
The former retail assistant remembers being “doubled down in pain” at work with the infection, but at the time she did not know what a urinary tract infection was.
She confided in her manager, who sent her to a pharmacy to purchase some potassium citrate cranberry sachets to relieve the pain.
A two-day course of sachets ran into two weeks but the pain persisted. It was then Ms Allen’s mum took her to the GP.
“I was given a three-day course of antibiotics, and that seemed to work,” she told i. “Then about two months later, I got another attack.”
For four years, Ms Allen dealt with “excruciating” recurrences of the UTI — but her doctor could not find any evidence of an infection when they ran tests.
To identify the infection, GPs uses a dipstick test that is sometimes followed by urine culture but specialists argue that this flawed and dated method rarely picks up chronic infection.
“I had my urine sent off to the labs to check what bacteria it contained, but nothing came back.”
Ms Allen was left in “excruciating” pain with repeated flare ups.
“When flaring, it feels like I’m being electrocuted as my bladder spasms,” she said. “Every time I had an attack, the pain would get worse.
“It can feel like I’m peeing hot kettle water mixed in with acid and shards of glass, followed by what feels like ten bee stings deep within the pelvis.
“No painkiller I’ve tried takes that kind of pain away, even morphine.
“One time, I was handed a mental health leaflet, because they thought it was in my head. I was even asked if I was sexually assaulted. I thought, why is no one listening to me?”
Years of fighting the infection with no cure in sight took its toll.
“Every time the infection flared up, I thought I’d caused a brand new infection because of what I’d eaten, what I’d drank, what I’d worn,” she said.
“At some points, my partner felt like he was my carer, and we couldn’t be intimate because of the pain. Of course, that puts a strain on the relationship,” she added.
Still without a diagnosis, Ms Allen spent eight years undergoing invasive bladder instillations that aim to put a protective coating on the walls of the bladder every three months.
But when the treatment was cancelled due to Covid in March 2020, Ms Allen was rendered bed bound.
“By the time I was due for my next treatment I was in that much pain, I couldn’t wash myself, and I had to be lifted into a bath,” she said. “I rang the doctors begging to be treated, but it wasn’t restarted.”
“There was a point where I couldn’t have probably told you my name I was that confused, where I was just riddled with this infection and was just told it was my bladder condition flaring up.
“I’d look in the mirror, and I couldn’t recognise the person staring back at me,” she added.
Desperate to find answers, Ms Allen began googling her symptoms.
“It was then I read an account of someone with chronic UTI. It was a lightbulb moment. Everything she described, I had. I was on the sofa cuddling a hot water bottle, and I started crying.
“Not one professional doctor told me that there’s a clinic in London that treats chronic UTI.”
Ms Allen recalls the day she was diagnosed as “one of the happiest days of my life.”
“I’d been dismissed for so many years. You just think that there’s something wrong with you and they don’t know what it is, so you’ll be stuck forever.
“I was so anxious during my first appointment, I had written down my medical history. The doctor just said, ‘it’s okay, I believe you.’”
Like other patients at the private clinic she attends in London, the 28-year-old has been prescribed a long-term regimen of antibiotics and hiprex, a bladder disinfectant. It could take years for the treatment to eradicate the infection but the results for Ms Allen are already life-changing.
“When I was told it’s not an incurable condition they can treat this and I can actually get better… I had a beacon of hope, at last,” Ms Allen said.
“I’ve returned to work. I’ve even booked a hiking holiday. I can enjoy an alcoholic drink and a coffee, and I can actually eat and drink what I want.”
‘Last year, I had my first normal wee in twelve years’
Rita Conry is 30 and has struggled symptoms of a UTI for 13 years. She experienced her first infection when she was a student living in Leeds.
When she spoke to her GP, Ms Conry said she was repeatedly told nothing was wrong.
The 30-year-old said she has since learned NHS primary care is reliant on a flawed test to diagnose an infection.
“I’d been going to the doctors about cystitis symptoms for two years, and they were saying the test to track a UTI was coming back negative,” she told i.
“I was in pain every day, but I was being told that nothing’s wrong with me,” she added.
On the word of her doctor, Ms Conry tried to ignore the pain.
“I was in bar work at the time, and I’d call in sick sparingly when I really couldn’t cope with the pain and the shift work.
Overwhelmed by the flare-ups, Ms Conry “grew obsessive every time the infection cropped up.”
She said: “I’d say, ‘oh, what have I done now to cause it?’. I cleaned and was consumed by it psychologically.
“One summer, I had a terrible flare where I was crying every day. I couldn’t have sex, and I felt like I was losing my mind. My bladder was spasming.
“I went back to the doctors and asked for a bladder examination (a cystoscopy), and they were reluctant to refer me.
“The third time I went to this doctor she did another dipstick test and said it was negative, and just dismissed me. I just burst into tears. It was then her face changed and she said: ‘is it really ruining your life?’ it was then I told her I just couldn’t live like this any more,” she added.
A cystocopy requires a doctor to put a camera up the urethra, the seat of pain for many chronic UTI suffers.
“There were five people in the room, and I was terrified,” she said. “I couldn’t stop crying.
“Now I’m older I feel really sad for that younger self, who didn’t know how to tell the doctors I was so distressed because they were going to do something so painful, to an area that causes me pain all of the time.”
The invasive procedure yielded no results, with Ms Conry told her bladder was inflamed, and to take painkillers.
After eight years of pain, the 30-year-old was referred to the Whittington Hospital in London, an NHS specialist clinic treating patients with chronic UTI.
“The Whittington is the hospital I was born in, and it’s two miles away from my house,” she said.
“To think, there was this specialist chronic UTI clinic around the corner from my house that I didn’t know about for about 10 years.”
For just over a year, Ms Conry has been on long-term antibiotics and hiprex, a bladder disinfectant. As the infection clears, she will be weaned off the medication, living without a UTI for the first time in her adult life.
“I weed for the first time in twelve years without any pain. I’ve struggled with the antibiotics so I’ve started drinking a probitic with kefir to protect my stomach lining,” she said.
“I’ve spent a lot of my years, unable to have coffee, to drink alcohol, to have sex. It puts you off meeting people, and starting a relationship.”
Reflecting on her experiences Ms Conry has produced a new short film on the subject – The UTI documentary.
The feature, released last Friday, tells the story of sufferers like her whose path to health and wellbeing is frustrated by misdiagnosis, outdated tests, and restrictive treatment guidelines.
She said: “One of the women we interviewed is 67, she’s been getting chronic UTI since she was 17.
“She said GP advice hasn’t changed since then, and she’s still asked if she wipes from back to front.
“She talks about having to take charge of your own body, but how hard that is to do because they are the experts. You don’t want to feel like you are getting laughed at,” she added.
Ms Conry advises anyone struggling to get checked out, adding: “It’s not normal to be in agony every month.”
‘Cats get a longer course of antibiotics than us’
Georgiana Morrar, 30, lives in Cardiff, Wales and said she spent three years living with an undiagnosed chronic UTI.
Ms Morrar said she initially woke up with a hangover over the Christmas holidays and “sensed something was off.”
“I put it down to too many beers the night before, I went to the toilet and it was painful to pee, so I thought I hadn’t drank enough water,” she told i.
“I put it to the back of my mind, but after three or four days, the pain was really bad. I started peeing blood.”
“By the point I visited the GP, my pee was blood orange. I was given a three-day course of antibiotics, and I thought, this isn’t going to work.
“My GP said come back if there was no improvement. Sure, there was improvement, but the pain didn’t completely go away.”
Like other sufferers, Ms Morrar was told her test was negative and she had no signs of an infection.
The pain combined with a lack of diagnosis left the 30-year-old struggling on her own.
“The pain was like a bowling ball of lava sat in my bladder. I could feel it moving when I moved,” she said. “Sometimes, it felt like a cut inside my urethra, almost like a constant sunburn.
“I didn’t only have physical pain, I had neurological symptoms. I felt dizzy all of the time, and I was losing balance. My short term memory was gone.
“I couldn’t focus on work and I was off sick for a month and a half. It was horrible. People would look at me and think that I was fine, but I wasn’t,” she added.
The pain got to such extremes Ms Morrar visited A&E, “pleading” for relief.
“I was just dismissed because my test came back negative, even though I was in agony. They said I was probably just stressed,” she said.
” I thought that I probably had some weird bacteria or virus that no one knows about. I felt like a new, unsolved medical mystery,” she added.
A few months after an A&E visit, Ms Morrar stumbled across a chronic UTI support group on the internet and is now a year and a half into treatment and feels “99 per cent better.”
“Sometimes I get five seconds of symptoms, but I can now live a life where I don’t have to be sick,” she said.
“I can drink coffee, alcohol, walk around… a real difference from wondering if putting too much salt on my food would cause a flare up.”
Ms Morrar warns others struggling that “if your tests are negative but you’re still in pain, it’s not in your head.”
“The reason my UTI continued was because the antibiotic treatment wasn’t long enough,” she said.
“We need a longer course than three days. Cats get a longer course of antibiotics than women,” she said.
“I understand the conversations around antibiotic use but a two-week course of antibiotics is better than enduring three years of pain.
“I know there’s an NHS clinic treating chronic UTI, but the difference will come when the NHS fully recognises the condition,” she added.
An NHS spokesperson said: “The NHS follows clear guidance from NICE on the treatment of UTIs and NHS organisations offer expert-led follow up clinics to both men and women who need them.
“NHS staff are also provided with detailed information and training to ensure that they can provide the best possible treatment to patients.”