Chronic UTI sufferer, 23, tells how 5-year battle to find treatment left her housebound and needing morphine – iNews

It took Lexi Kelly-Hunt five and a half years to get a diagnosis for Chronic UTI. (Photo: Lexi Kelly-Hunt)

A young woman has revealed how a five-and-a-half year battle to get treatment for a chronic urinary tract infection left her with nerve damage, struggling to leave the house and on morphine for pain relief.

It comes after i revealed yesterday that thousands of women were living with life-changing chronic urinary tract infections that can last for months or even years due to failures in treatment and testing.

Lexi Kelly Hunt, 23, from Liverpool said she began suffering from UTI symptoms when she was around 16 or 17 years old and experienced ten episodes in just two years. Her battle to find the right treatment left her struggling to exercise or go for a walk and once saw her hospitalised on morphine.

When visiting her GP, Ms Kelly-Hunt said her concerns were dismissed and she was instead repeatedly told to wash herself more thoroughly.

She said she underwent ultrasound examinations, cystoscopies and visits to gynaecologists but was not offered a blood test or urology appointment for three years. Ms Kelly-Hunt also described being laughed at or belittled by medical professionals.

Instead, Ms Kelly-Hunt was told to try herbal remedies and pain management group classes and offered invasive bladder wash treatment.

My GP said I should make sure I was cleaning myself, when I said I do, they said I might be too clean, Ms Kelly-Hunt told i. I had two CT scans, but they couldnt find anything. They discharged me with nothing, and just said, deal with it basically.

She claims a gynaecologist she was referred to by her GP laughed at her for coming to an appointment, saying she did not have a gynaecological issue and was cheeky for getting a referral. Ms Kelly-Hunt said a pain specialist also told her he thought the pain was in her head.

It was medical gaslighting, she said.

When coronavirus hit, Ms Kelly Hunt was not able to access any support for a year. In August 2020, she ended up in agony, with paramedics treating her on gas and air before administering a morphine drip in her own bed.

They took me to hospital and did nothing. I was only there for four hours. I was given a box of antibiotics and that was that, she said.

Following this particular trip to hospital, she sought private care, booking an appointment at a specialist UTI clinic on in London which she found through a community of sufferers online.

I was reluctant to go, its a lot of money and I thought, why do I have to go private? But I booked an appointment and went to see them in October. They took one urine sample, and within half an hour I got a diagnosis. None of these invasive tests, and they said all my symptoms were characteristic of a chronic UTI where its not visible because its become embedded in your bladder. All the specialists do is take a sample fresh, put it under the microscope slides. Thats it.

With an accurate diagnosis and a course of long-term antibiotics from the clinic, Ms Kelly-Hunt said she has got her life back.

I have flares up and down, but overall Im in full time work, I can exercise and go for a walk, she said.

But the treatment is costly, with private health insurers unwilling to cover chronic conditions meaning Ms Kelly Hunt has to pay for her consultations herself, plus trips from Liverpool to London.

She said she does not know how long she will require treatment for is hoping to start coming off the antibiotics by the new year.

Thousands of women are suffering with life-changing chronic urinary tract infections (UTIs) that can last for months or even years due to failures in diagnosis and treatment,irevealed yesterday.

Specialists say the infections, which often begin as an acute bout of cystitis, can occur when bacteria become embedded within the bladder wall and become difficult to treat with short courses of antibiotics.

For many patients who develop a UTI, their experience is extremely painful but short-lived. But doctors say that for thousands of others, a one-off acute attackturns into a chronic infection that dominates their lives.

Aniinvestigation has found that outdated testing methods can lead to up to 50 per cent of infections being missed and some women undergo unnecessary, painful invasive treatments after being misdiagnosed with an incurable condition called interstitial cystitis following referral to a urologist.

Specialists say the condition can be life crushing and that patients are being let down by the dipsticks tests used to detect urinary tract infections andshort three-day courses of antibiotics in NHS primary care.

Chronic UTI is not a universally accepted diagnosis but there are specialists within the UK who are treating for the condition, including an NHS clinic run by the Whittington Hospital in London.

Urinary tract infections typically occur when bacteria enter the urinary tract through the urethra and begin to multiply in the bladder.

Symptoms can include bladder and pelvic pain, the constant urge to urinate and pain or a burning sensation while peeing.

Guidelines from the National Institute for Health and Care Excellence (NICE) for acute and complex UTI treatment recommend that patients with suspected recurrent UTIs are investigated or treated for the illness even if the dipstick is negative.

NICE guidelines also recommend that a urine culture sample should be sent for all women experiencing recurrent UTIs for further investigation, regardless of the result of the dipstick test.

Chronic UTI specialists and patients recognise that many caring GPs are bound by the NICE guidelines and argue that there should be a wider overhaul of the way they are advised to test and treat for UTI in women.

Theres a whole mental health aspect, you question yourself. Are you making it up? Are you being dramatic? Other people do too; are you sick again? Now I know I have a chronic illness.

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.

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Chronic UTI sufferer, 23, tells how 5-year battle to find treatment left her housebound and needing morphine - iNews