Oh my UTI: Everything you need to know about Urinary Tract Infections and how to battle through
Suzanne Harrington is one of the many women who suffer from Urinary Tract Infection. She breaks the code of silence on this painful and debilitating condition in the hope of encouraging better treatment
One of the few subjects with less conversational appeal than the urinary tract is the urinary tract when it goes wrong.
While we are happy to talk about the female undercarriage in relation to sex, pregnancy or birth, when it’s about wee, we’d really rather not — especially if it involves wee-related dysfunction.
With younger women, we assume urinary tract infection (UTI) is sex-related (yet UTI, formerly known as the “honeymoon syndrome”, is about as romantic as a broken leg). With older women, we tend not to even have a medical term beyond generalised ‘bladder problems’, with the inference of stress incontinence, urgent trips to the loo, and the utter terror of becoming an Old Lady Who Smells Of Wee.
It’s mostly a female thing. The ratio of women to men who suffer from UTI is 8 to 1, with between 50pc and 60pc of women having at least one bout of it during their lifetime; of this 50-60pc, around one fifth of women will suffer recurrence several times a year. When we get UTI symptoms — the urge to frequently urinate, a painful burning sensation during urination, lower abdomen pain, cloudy urine, blood in the urine — we are advised to drink plenty of fluids, take a two-day course of over-the-counter potassium citrate powder, and drink cranberry juice. Oh, and avoid tight clothes, perfumed bubble bath and sex. The inference is that we have somehow brought it upon ourselves, by having too much sex and not drinking enough water. Or wearing thongs. The reality is that sex does very often cause UTI, because even though the urinary tract is sterile, bacteria can make its way in from the perianal region during sex — which is why ‘post-coital voiding’ (having a pee after sex) is advised.
But why does chronic UTI still even exist, rather than being consigned to a historical list of extinct conditions like scurvy and small pox? Why, when it is recurrent, is it so difficult to treat? And why does it become recurrent in the first place?
Professor James Malone-Lee is emeritus professor of medicine at University College London and an expert on UTI. Yet even after 37 years of bladder-related clinical research, working with all age groups and genders, he says he still doesn’t know exactly what causes the condition.
“There’s a great deal we don’t understand,” he tells me, adding that in chronic cases, “patients suffer appallingly — they can’t work, they can’t have sex, it’s hugely disruptive.”
By the time patients reach his clinic at a north London hospital, they will have been suffering for an average of six years; some patients can have recurrent UTI up to eight times a year. Yet 40pc of his patients have been told that their symptoms are psychosomatic — that the pain, fever, discomfort and distress are imaginary. This makes Professor Malone-Lee very cross indeed, (he calls it “grossly insensitive cod-Freudian outright nonsense”) and infuriates actual sufferers so much that they have started a campaign in the UK, the Chronic Urinary Tract Infection Campaign (www.cutic.co.uk) So what exactly are they campaigning for? Free cranberry juice for all?
Sadly no, because cranberry juice doesn’t work. It’s too dilute. What Cutic is campaigning for is a change in the testing, diagnostics and treatment of long-term recurrent UTI. Basically, the pee on a stick test we do at the doctor’s surgery has not been updated since the 1950s, and while commonly accepted as the gold standard UTI diagnostic tool, Prof Malone-Lee says it has never been properly validated. More importantly, it doesn’t work.
Dipstick and midstream urine (MSU) tests at the GP miss at least 50pc of bacterial infections — which means that women are often treated with a variety of inappropriate medicines and procedures, or told that the symptoms are caused by something else (stress, inflammation, nerve or muscle issues). Invasive, ineffectual treatments such as instillations, cystoscopies, or urodynamics studies are undertaken, to little or no effect, and patients can be incorrectly diagnosed with interstitial cystitis, painful bladder syndrome, urethral syndrome or an overactive bladder, when what they really have is undetected chronic UTI. They are offered painkillers and anti-depressants, and told, in a manner of speaking, to live with it.
“Doctors are seeing patients presenting with UTIs, and using diagnostic tests that don’t work,” says Prof Malone-Lee. “The patient goes to the doctor, describes the symptoms, but if the test shows negative [for UTI bacteria], the doctor says that there is not an infection. The patient is sent home to drink plenty of fluids, only to return to the doctor with worsening symptoms, but the urine is diluted from the extra fluids and so the infection remains undetected. If the patient is given antibiotics, there is a 30pc failure rate.”
All too often, according to the Cutic campaign, these diagnostic tests disregard the white blood cells in a patient’s urine, often a tell-tale sign of infection.
Research by microbiologist Scott Hultgren, at the Washington University of St Louis, found that microbes in UTI can invade the bladder wall, and once inside, they stop dividing — making them impervious to antibiotics. And this is before you ever consider the grave concerns around antibiotic resistance; when the UTI bacteria form biofilms in the bladder, this makes them extremely resistant to antibiotics and cannot generally be cured by the 3-14 day courses that GPs can prescribe, or the six months of low-dose antibiotics offered by some urologists. Once Prof Malone-Lee has correctly diagnosed a chronic UTI, he uses long-term antibiotics and ‘cleanses’ the urine with the preventative substance methenamine hippurate, marketed as Hiprex. This makes the urine acidic, which apparently deters the growth of bacteria.
Cutic is campaigning for new research and better diagnostics, and the recognition that living with chronic UTI is painful and debilitating. While there are fewer men who suffer, Prof Malone-Lee says that his male patients have terrible symptoms — painful ejaculation, and feelings of isolation as it is generally considered a ‘woman’s problem’. Even children can get it, but the most common demographic are women over the age of 55.
Obviously, not all people who suffer from UTI are going to have their lives blighted by it. Many cases resolve themselves, before the bacteria ever embeds itself in the bladder wall; for many, those sachets from the pharmacy can do the trick. Otherwise, what do you do — take a vow of celibacy?
No thanks. Instead, those of us prone to UTI take precautions — as well as post-coital voiding, we take D-Mannose, a supplement that closely resembles glucose which ‘sticks’ to E-coli (the most common bacteria that cause infection), causing it to be ‘rinsed out’ when we pee, rather than hanging around the urinary tract.
Also, fresh lemon juice, once metabolised, alkalises urine (although not blood) — I get through a dozen lemons a week, which seems to help with the burning sensation during an infection. I also avoid alcohol totally, and sugar as much as possible.
Perhaps the greatest issue faced both by UTI sufferers and stress incontinence sufferers — two conditions that involve women and wee — is our reluctance to speak openly about them. Last year, after my urethra was detached from my kidney during routine surgery, I had sudden onset urinary incontinence, which lasted for about a month until I was successfully repaired via more surgery.
During this time, I encountered Tena Lady — adult incontinence wear — for the first (and hopefully last) time, and was horrified at (a) how expensive these products are and (b) how they are on sale pretty much everywhere, from pharmacies and supermarkets to corner shops. This suggests that thousands of women are silently paying through the nose for incontinence wear, rather than having the problem dealt with effectively. Again, embarrassment remains a major debilitating factor — and the lack of impetus within the medical profession to address such a commonplace but horrid condition. When a friend of mine recently refused a go on our trampoline, it was, she explained reluctantly, because she would pee herself if she did. Ever since she had her second child, this has been the case, she said. She tries to avoid sneezing too, or laughing too hard. Imagine if this condition affected mostly men.
While people like Cutic and Professor Malone-Lee do their best to raise awareness of women and non-life threatening urinary related conditions, the fact remains that we do still largely suffer in silence. This needs to change, as does the entire approach to dealing with UTI and related symptoms, starting with ineffective diagnostics all the way to learning to speak up about ongoing pee-related problems in a loud, clear voice. And we are the lucky ones, with our access to medical care and antibiotics. What about women in the developing world who cannot access treatment at all?