‘My bladder felt like it had glass inside it’: Urinary tract problems can be easily treatable but, as model Scarlett Howard discovered, they can last for years… and left her feeling suicidal
Every Wednesday, 27-year-old radio presenter and model Scarlett Howard undergoes a painful procedure to inject a cocktail of drugs directly into her bladder
Every Wednesday, 27-year-old radio presenter and model Scarlett Howard undergoes a painful procedure to inject a cocktail of drugs directly into her bladder.
The treatment, known as a bladder instillation, involves inserting a plastic tube (a catheter) into her bladder, allowing liquid medication — both antibiotics and anti-inflammatory drugs — to be pumped in, to reduce pain and inflammation.
Not only is the procedure unpleasant, it is also expensive. It costs £500 a time (a price which her medical insurance does not fully cover) at a private clinic in London — and she has already had 12 treatments this year.
But Scarlett believes she has no other option after suffering from a type of chronic urinary tract infection (UTI) known as an ’embedded UTI’ for more than five years.
‘It feels like a knife is being stuck inside me,’ she says. ‘But this treatment is all that helps the excruciating pain of a UTI that I just can’t get rid of.
‘The condition has meant I’ve been unable to work at times, and relationships are hard because sex is too painful. I’m on antidepressants and there have been times when I’ve been suicidal.
‘I’ve spent more than £30,000 on my treatment, including instillations, scans and tests, because the NHS waiting list is so long. It scares me that I could be living like this for the rest of my life.’
Scarlett, who lives in Essex, is one of an estimated 1.6 million women in the UK who are living with an infection which comes under the umbrella term ‘interstitial cystitis’ (IC). A recent study suggests a similar number of men could be affected, too.
The exact cause of IC is not known but it starts like a normal UTI, when bacteria get into the urine and infect the urinary tract, causing symptoms such as a sudden, strong urge to urinate, waking up in the night to go to the loo and pelvic pain.
But, while most UTIs either disappear on their own or after a course of antibiotics, some UTIs keep coming back.
Scarlett, who lives in Essex, is one of an estimated 1.6 million women in the UK who are living with an infection which comes under the umbrella term ‘interstitial cystitis’ (IC)
‘Over time, the bacteria causing the infection move from the urine and into the cells of the bladder wall, where they are protected from antibiotics and so become harder to kill,’ explains Professor Vikram Khullar, a consultant obstetrician and gynaecologist at St Mary’s Hospital, London, who specialises in bladder problems in women.
‘This causes the bladder cells to become inflamed and leads to even more pain.’
This type of embedded UTI affects around ten per cent of people who develop a UTI, he says. It’s a condition that can be treated successfully if women are given the correct tests and medication.
However, women may miss out on prompt treatment because the dipstick tests, offered by GPs, often don’t detect UTIs at all, as they only pick up the body’s immune reaction to an infection rather than the actual pathogens causing the infection, says Professor Khullar.
It is therefore vital that women with symptoms are investigated at an early stage using urine cultures, where labs grow the bacteria found in urine so that the correct antibiotic is prescribed.
‘If a standard UTI is left undetected, some women will develop a painful bladder or chronic UTI, which is much more difficult to treat and can have a life-changing impact on those affected,’ says Professor Khullar.
Scarlett’s first experience of a UTI was in her late teens when she became sexually active. This caused an extreme burning sensation and the urge to urinate every ten minutes, but cleared up with the antibiotic nitrofurantoin.
Around 80 per cent of UTIs are thought to be caused by sexual activity, but other causes (for women) include wiping from back to front, the use of diaphragm contraceptive or wearing very tight clothing which can put pressure on the bladder.
It was in 2015 that Scarlett, then in her early 20s, suffered a UTI that would change her life.
‘I was travelling and waited until I got home two weeks later before I saw my own GP,’ she says. ‘That’s a decision I regret now.
‘My GP gave me a three-day course of nitrofurantoin, but my symptoms came creeping back. And, to my shock, a dipstick test said I had no infection.’
Professor Khullar stresses it is important that women are diagnosed within ten days of the onset of symptoms so that antibiotics are started as soon as possible.
‘Delaying treatment can cause the bacteria to multiply or travel further into the bladder,’ he says.
Under NICE guidelines, women are offered a three-day course of antibiotics for a UTI (for men it is 14 days), but often this is not long enough to kill off the infection.
‘There is evidence that up to ten per cent of the population needs a longer course of antibiotics — up to 14 days,’ says Professor Khullar.
Despite Scarlett’s negative test result, her GP referred her to a urologist, but there was an eight-week wait for an appointment and her symptoms worsened.
‘I was in so much pain that I was sleeping in 20-minute blocks on my bathroom floor so I could be closer to the loo,’ she recalls.
‘I couldn’t wear underwear or tight clothes because it was so painful, and I had to turn work down as I had to stay by the loo.
‘I was exhausted and would cry in agony. My bladder felt like it had glass in it. It got to the point where I would think: if I’m not cured, I’m going to kill myself.’
Tests showed Scarlett’s bladder was inflamed and she was diagnosed with interstitial cystitis, which she was told was incurable.
‘I couldn’t believe what I was hearing, because there was no way I could live like this,’ she says.
‘The doctor mentioned lifestyle changes such as not smoking or drinking, but I don’t smoke and I’d drunk nothing but water for three months.’
The following year, further private tests provided some answers. Rather than interstitial cystitis, Scarlett was diagnosed with an embedded UTI. The good news was that this could be improved with antibiotics.
At this point, Scarlett, by now being treated privately, was put on a long-term, high-dose course of nitrofurantoin. She took four tablets a day and, in six months, her symptoms had halved.
Unfortunately, she developed another acute UTI in 2019 after meeting a new partner, and this time the bacteria was resistant to nitrofurantoin.
Even worse, tests revealed that the inner wall of her bladder was totally eroded, leaving the nerves exposed to the acid in her urine which was causing the debilitating pain.
It is for this that Scarlett now has the bladder instillations — to coat the damaged lining and offer a temporary protective barrier from irritation from urine.
Alternative remedies
Pharmacist Gemma Fromage reveals the other uses for everyday products: Epsom salt for sleep.
Epsom salt is popular for many ailments and is made up of magnesium sulfate, a chemical compound many people lack due to their diet.
The most popular use for Epsom salt is dissolving it in a bath, where it releases magnesium and sulfate, which are absorbed through your skin.
This provides the magnesium and sulfates needed for multiple body functions. A study in Physiological Reviews confirmed that magnesium is needed by the brain to help produce neurotransmitters (chemical messengers) that reduce stress and help induce sleep, and therefore adequate levels of magnesium in the body are essential.
A review in Food and Nutrition Research also showed that magnesium may promote sleep by helping the body to produce melatonin.
‘I’m back on the high-dose oral antibiotics and have already been admitted to hospital twice this year for IV antibiotics because the infections have not responded to the oral ones,’ she says.
‘But it worries me that if I’m living like this now, and the condition is incurable, what will it be like when I’m older?’
Scarlett says she’d also like to have children in the future but she’d be scared to give birth in case that causes another infection.
She belongs to a Facebook support group with more than 5,000 women, and some men, who are all living with this condition.
‘One lady is 80 and has suffered with it for 50 years and I really don’t know how she’s coped,’ says Scarlett. ‘People want to end their lives because of it.
‘Some of the men say they feel like cutting off their genitals to get rid of the pain.
‘All I want to do now is try to prevent others from delaying their diagnosis and make sure they receive the correct treatment.
‘When a root cause of the pain or inflammation can’t be found, it’s common for urologists to diagnose incurable IC.
But, in cases like mine, where an embedded UTI has been diagnosed, the infection can be improved by antibiotics.
‘The incurable IC diagnosis is outdated and is failing patients.’
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