Linnea Dunne investigates living with UTIs and Interstitial Cystitis
As a waitress prone to urinary tract infections, I used to sympathise with the women who ordered cranberry juice. I knew what it meant. We all did. We used to laugh at it with a wink and a nod, “Wild night, eh?” And we weren’t referring to a wild night of drinking. Although I do recall at one stage making cranberry juice my preferred vodka mixer of choice, sort of like a precaution. I also have a very vivid memory of knocking back an Amoxicillin with a White Russian in one of Stockholm’s indie music venues at least once. You’re not meant to drink when on antibiotics, of course, but when you get a UTI every month or two there comes a point when you stop caring.
UTIs are the second most common type of infection, with 50% of women experiencing them at least once. “The urethra is approximately 4.5-5cm long, which allows bacteria to easily make their way to the bladder and cause cystitis. The short distance from the anus to the urethra also explains why women are generally at higher risk of UTI than men,” explains GP Caoimhe Hartley.
“For female babies, the fact that the urethra and anus are so near each other increases the risk of gut bacteria infecting the bladder and urinary tract. For young women, becoming sexually active can also coincide with increased frequency of UTIs,” she continues. “Women are also at higher risk of developing urine infections in pregnancy, and there is some evidence that there may be a genetic predisposition to developing them.”
When I asked about UTIs on social media, my inbox flooded with hand-up emojis. “I suffered with them for about ten years,” said one woman. “Maybe five times a year?” said another, who promised to get back to me with a more detailed account before messaging me again a couple of weeks later, saying “I got a bit delayed because, guess what – I got another UTI!”
So half of all women experience them sooner or later, suffering symptoms including having to pee more often, a sensation of needing to go but only passing small amounts of urine, pain with urination, and occasionally blood with urination. But what strikes me is the huge amount of people who, like me, seem to have been suffering from recurrent UTIs. “It’s something I’ve lived with since I was five,” a woman by the name Sarah* tells me. “There were discussions about it potentially being because I would resist going to the toilet when I needed to, which personally I don’t remember doing. Now, as an adult, I just feel like they were clutching at straws for an answer.”
She recalls a medical test when she was eight or nine, when she had to drink brightly coloured fluid and stand up weeing in front of at least eight medical staff while they scanned her. “It will always be etched in my memory. I remember sobbing while I had to stand there – mainly because of the embarrassment, and also because they never really properly explained anything to me.”
Sarah had numerous procedures after that, including bladder and kidney scans, and in school she carried a letter from the hospital stating that she had to be allowed to go to the toilet whenever she needed to. The infections died down a little during her teenage years, but when she became sexually active, they came back with a vengeance until, one time, she put off going to the doctor and ended up in hospital as a result. “The pain took over my lower body and I couldn’t even bend to get into the car,” she recalls. “But at the hospital that time, I got more answers than I’d ever had.”
After a number of ultrasound scans, Sarah was informed that there was scarring on her left kidney, likely as a result of the childhood UTIs not being treated effectively. “It felt like a relief, to be honest,” she says about finally getting some answers. But between increasingly painful periods that required heavy pain killers and regular courses of antibiotics, she says she felt like her female organs had failed her.
According to the HSE, patients with recurrent UTIs, which is defined as two or more UTIs in the last six months or three or more in a year, should be offered a specialist opinion. Once other conditions with similar symptoms – including some STIs, post-menopausal vaginal atrophy, thrush, vulvodynia and certain skin conditions of the vulva – have been ruled out, patients should be given advice on behavioural measures before they’re offered antibiotics. Why? Because repeat or long-term use of this medication carries risks such as liver damage, pulmonary fibrosis, and antibiotic resistance – something the patient, holds the HSE, should always be warned about.
That younger version of me with the White Russian at the gig had never heard about antibiotic resistance, that much I know. Ally*, the woman who didn’t get back to me for weeks because of yet another UTI, has heard of it – but she’s been reassured it’s not an issue. “We know it’ll head straight for a pelvic inflammatory disease or onto my kidneys if I don’t get the treatment. Instead, we vary the kind of antibiotics as often as possible. One doctor also reassured me that it’s not the individual that gets resistant, it’s the bacteria themselves – so I’m somewhat safe to go on them when needed,” she tells me. “Whether this is true or not, I don’t know.”
Sarah, who finally found some relief in the strongest form of one specific brand of antibiotics, was devastated when her GP refused to prescribe it to her again after about ten UTIs in a year and a half – but it was never explicitly explained to her why. “Maybe she felt my body was building up tolerance to them?” she reflects.
For Maura*, who says she’s always been prone to UTIs, things went from bad to worse about four years ago. “I contracted one where the symptoms of dreadful frequency, urgency and shooting pains persisted long after the antibiotic course was completed. I returned to my GP several times and was told this was post-infection inflammation, which would clear in time. But that was not the case,” she says.
The symptoms kept coming and going, and eventually she was housebound, going to the loo every ten minutes, barely functioning. “I couldn’t work, walk any distance, lead any semblance of a normal life. I was told repeatedly there was no infection, and my GP suggested my symptoms were anxiety-related – but having been prone to UTIs all my life, I knew I had a UTI.”
It was when Maura was finally referred to a urologist that she was told about Interstitial Cystitis. “I was told that IC was likely a life-long condition that I would basically have to live with,” she says. Dr Hartley describes it as a collection of symptoms that reflect a chronic condition of the bladder, causing persistent and unpleasant sensations. “A urine culture test, looking for bacteria in the urine, will be negative in Interstitial Cystitis, whereas in the case of a UTI, a urine sample would usually show more white cells, sometimes red blood cells, and the growth of bacteria,” she explains.
Maura went off to do some reading and came across London Professor James Malone-Lee, who disputes IC as a valid diagnosis. “He states that traditional methods of UTI testing – dipsticks and cultures – are not fit for purpose and miss a large percentage of testing. His clinic diagnoses infection based on symptoms, examining a fresh sample of urine underneath a microscope for white blood cells and epithelial cells,” she explains. “I made my way over to the clinic, where I was listened to and diagnosed with a chronic, embedded UTI.”
The Professor’s theory – that bacteria during a chronic UTI can hide in the bladder’s lining, where it can’t be detected by the traditional, ‘gold standard’ urine sample – is gaining traction. One study, for example, showed dipstick tests to pick up on bacterial growth in fewer than 10% of patients who could be diagnosed with more sensitive testing methods, and a growing number of professional associations are speaking out on the limitations of traditional testing for UTIs.
But what about treatment and the fear or antimicrobial resistance, as the academics call it? Maura was put on a long-term, high-dose antibiotic, and now, 18 months later, she is “immeasurably better,” she says. This is a protocol Prof. Malone-Lee has proven works – and concerns about antibiotic resistance are met with the argument that it is in fact short-term, low-dose courses that are leading such a development, as the infections are not fully and properly treated.
For Carly*, a mother of two who used to get UTIs all the time and got “a rake of the same antibiotics”, it was the recommendation of a ten-day course of a specific brand of antibiotics that put an end to the suffering. “Poof! Haven’t had one since!” she says, laughing and adding that it remains to be seen whether or not that was coincidental, what with her youngest child being very small still and sex and alcohol having been among the key triggers for her previously.
Julie*, who’s been suffering from recurring UTIs for a decade or so, describes the way she deals with another bout by rote: “Cystopurin from the pharmacy, two-day course of six sachets, three to be taken each day; increase fluids, reduce or cut out caffeine and alcohol – and if that doesn’t work, get antibiotics from a doctor.” She’s had three ultrasound scans of her bladders and kidneys. Her problems are ongoing.
The advice is similar wherever you look: rest, drink plenty of water, void after intercourse (that’s pee after the ride for you and me) – all the things Julie said. Also “wipe from front to back, and avoid spermicides,” says Dr Hartley, adding that peri- or postmenopausal women experiencing vaginal dryness should consider treatment with low-dose, local, vaginal oestrogen, and ongoing bladder symptoms such as incontinence or difficulty emptying fully should be investigated further.
Yet, as someone who made sugar-free cranberry juice a part of my diet, was always very thorough with the voiding, so to speak, and changed the kinds of clothes and underwear I wore just to minimise the risk of yet another bout of what felt like constantly weeing barbed wire – and who still had to put up with the experience many times a year all throughout my childhood, teens and early twenties – it’s hard not to find the lifestyle-adjustments pill a hard one to swallow.
“I genuinely feel like it’s something I’m going to have to live with for the rest of my life,” says Sarah. “It’s just about finding ways to live with it without it taking over entirely. It affected my confidence so much growing up, and I’ve always felt like the ‘only one’. I know now it’s a common thing, but there’s still some sort of shame about it.” Maura’s verdict is a tad harsher: “It’s a medical scandal that so many women are fobbed off with an IC diagnosis when the tests being used to rule out infection are unfit for purpose,” she says.
With the World Health Organization claiming that 65% of UTIs are caused by a type of bacteria that’s resistant to the very antibiotic most commonly used to treat them, I’m not sure what the solution is. I’ll accept that refraining from popping penicillin with a glass of White Russian is most likely not it. Maybe a long, hard look at our reliance on dipsticks is part of it. So far, we’re left with more questions than answers – but I guess as women, at least we’re used to that.
*All names have been replaced in order for the women to remain anonymous.