Every week, radio presenter and model Scarlett Howard, 27, undergoes a painful procedure in which a plastic tube is inserted into her bladder and antibiotics and anti-inflammatory drugs are pumped in.
"It feels like a knife is being stuck inside me," she says. "But it’s the only thing that stops the excruciating pain of a urinary tract infection (UTI) that I’ve had for at least five years.
"I’ve been unable to work at times, and relationships are hard because sex is too painful.
"I’m on antidepressants and at one point I was suicidal. I’ve spent over £30,000 on treatment because the NHS waiting list is so long. It scares me that I could be living like this for the rest of my life."
Howard, from Essex, is one of an estimated 1.6 million women in the UK living with a bladder condition which comes under the umbrella term ‘interstitial cystitis’ (IC) and in her case, it was caused by chronic infection. A recent study suggests a similar number of men could be affected too.
A case of IC can start 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 and pelvic pain.
But while most UTIs disappear on their own or after a course of antibiotics, some keep coming back. This type of ‘embedded’ condition affects around 10% of people with a UTI but can be treated successfully if women are given the correct tests and medication.
Like many women, Howard’s first UTI started when she became sexually active in her late teens. Around 80% of UTIs are thought to be caused by sexual activity, but other causes (for women) include wiping from ‘back to front’ or using the diaphragm contraceptive.
But in 2015 Howard, 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 GP," she says. "I regret that delay now because it made my condition worse.
"My GP gave me antibiotics but my symptoms came back and the standard dipstick urine test performed said I had no infection – but I know now that these tests are not accurate with embedded UTIs."
Watch: 7 things everyone should to know about UTIs
Despite Howard’s negative test result, her GP referred her to a urologist.
"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. My bladder felt like it had glass in it and I would think: if I’m not cured, I’m going to kill myself."
Further tests showed Howard’s bladder was inflamed and she was diagnosed with interstitial cystitis, which she was told was incurable. But thankfully, more tests showed that Howard was diagnosed with an embedded UTI which could be improved with antibiotics.
Howard decided to go private and was put on a long-term, high-dose course of antibiotics. In six months, her symptoms halved.
Unfortunately, Howard developed another acute UTI in 2019 after meeting a new partner, and this time the bacteria was resistant to her antibiotic.
Tests also 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 Howard now has the painful weekly treatment to coat the damaged lining and offer a temporary protective barrier from irritation from urine.
"I’m back on the high-dose oral antibiotics and have already been admitted to hospital twice recently 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?
"All I want to do now is try to prevent others from delaying their diagnosis like I did and make sure they receive the correct treatment.
"They need to insist on further tests if the standard urine tests says negative because they might just have an embedded UTI like me which can be treated, if not cured."
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