The Mail on Sunday

First drug to reverse cause of bladder pain

- By Martyn Halle and Sally Wardle

IT IS a common bladder condition that can trigger agonising pain ‘like a paper cut inside the body’.

And now, NHS patients with severe symptoms are to be offered a first-of-a-kind drug that could end their distress.

As many as 400,000 people in the UK are thought to have bladder pain syndrome – also known as interstiti­al cystitis.

The exact cause of the chronic i l l ness, which mainly affects women, is not clear. But it results in intense pain in the pelvis and frequent, sudden urges to urinate – which can leave patients needing the toilet up to 60 times a day.

In some people, the lining of the bladder – the sac where urine is stored, within the pelvis – becomes inflamed, stiff, scarred or covered in ulcer-like growths.

Symptoms can come and go in waves, but there is no cure. And unlike bacterial cystitis – a common infection that affects the urethra and bladder – antibiotic­s do not work.

Many patients try multiple treatments before finally getting some relief. However, others will continue to suffer from discomfort and pain.

Now, a new drug, has been recommende­d for use on the NHS by the National Institute for Health and Care Excellence – or NICE.

The pill – first developed 40 years ago to break up blood clots – is believed to repair the damaged lining of the bladder.

This protects the delicate tissue and nerves underneath from irritating substances in the urine and prevents the onset of symptoms.

Pentosan polysulpha­te, sold under the brand name Elmiron, will be available to patients from next month. It is specifical­ly for sufferers who have haemorrhag­es in the bladder, or patches of inflammati­on – known as Hunner’s lesions – and who have not responded to standard oral treatments.

Jonathan Goddard, a consultant urologist at Leicester Royal Infirmary, who gave evidence to NICE in support of Elmiron, says: ‘This is a chronic condition and difficult to treat. Elmiron is effective and well- tolerated, and should be an available option.’

Most people are first affected by bladder pain syndrome in their 30s or 40s but only ten per cent of sufferers – roughly 40,000 patients – go to their doctor for help.

Penny Grimwood, 72, from Guildford in Surrey, was first diagnosed with interstiti­al cystitis in 2012, after two years of severe bladder pain.

About a year later, doctors realised she had Hunner’s lesions on the wall of her bladder.

‘The best way of describing it is if you squeeze lemon juice into an open cut,’ she said. ‘With a cut you can wash away the cause, but when it’s inside of you and in several places in your bladder there is no relief.’

Penny was referred to a specialist at Leciester Royal Infirmary – about 30 miles from her home at the time – who had permission to prescribe Elmiron. She noticed a reduction in pain – helped further by the surgical removal of the ulcers.

‘I still have to be careful what I eat and drink – as acid can irritate the bladder,’ she says. ‘But my life has become so much more bearable.’

NICE was unable to recommend Elmiron for use on the NHS earlier this year – but has since struck a deal with the manufactur­er which makes it cost-effective.

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