Agony of men suffering in silence after months with a drainage tube left in their bladder due to prostate op delays

Doubled up in agony from the searing pain in his bladder, Arnie Skelton somehow managed to get himself to A&E.

‘It was four or five hours before I was finally examined by a doctor and in that time I experienced some of the worst pain I’ve ever felt in my life,’ says Arnie, 72, from Stockport, who runs a training and development business.

‘It was excruciating. My bladder was so full that my stomach was sticking out, yet try as I might I just couldn’t pee for about eight hours.

‘I’d taken paracetamol and ibuprofen but it didn’t touch the pain.’

Arnie was suffering from severe urinary retention — which meant he was unable to pass any of the urine stored in his full bladder (a man’s bladder can hold around 1.2 pints).

It was due to a chronic condition, diagnosed in 2018, called benign prostatic hyperplasia (BPH), an age-related problem where the prostate gland gradually becomes enlarged. 

It can then press against the urethra, the tube that carries urine from the bladder to the penis, impeding urine flow, meaning men struggle to pee.

So the relief Arnie felt when doctors drained his bladder by inserting a catheter — a thin plastic tube — via his penis and up into his bladder was ‘just incredible’, he says.

‘It took about four minutes for my bladder to empty and almost instantly I was pain-free,’ says Arnie.

But his euphoria waned when, at a follow-up check a few weeks later, doctors told him he would need to keep the catheter in place — and hooked up to a plastic urine bag strapped to his thigh — until he could have surgery for the underlying BPH, to remove the excess prostate tissue.

Without the surgery and a catheter he could have ongoing attacks, they predicted, warning it could be another 12 to 18 months before he could have the operation on the NHS.

‘I was delighted I could pee again but the thought of putting up with a catheter for that long was completely unacceptable,’ says Arnie.

‘It constantly moves around inside your penis as you move and irritates the foreskin so much that it started to bleed.

‘And after just two weeks of using it I developed a urinary tract infection caused by bacteria from the catheter — and the infection came straight back almost as soon as I finished a course of antibiotics.’

(Urinary retention is much less of a problem in women so they don’t generally use catheters for the same length of time.)

Now some of Britain’s most senior doctors are warning that up to 10,000 men here could be suffering in silence from the physical and mental effects of wearing urinary catheters for months — even years — while they await surgery.

Once a catheter has been inserted into the bladder, it’s held in position by inflating a balloon on the end, while the other end is attached to a bag strapped to the leg and emptied every couple of hours (catheters are changed around every three months).

As well as the embarrassment and discomfort they cause, catheters make sex extremely uncomfortable, almost impossible; disrupt sleep (the fear of dislodging it at night keeps many men awake) and increase the risk of urinary tract infections (due to bacteria lurking on the plastic surface).

In fact, almost one in 20 catheter-related urinary tract infections in men can lead to life-threatening sepsis, when the immune system overreacts to a bug.

The doctors — all specialists in urology — are calling for the NHS to set a new target of 30 days from a catheter being fitted to surgery being completed.

BPH affects half of all men over 50 — it can be treated with drugs that relax bladder muscles or shrink overgrown tissue, but some 25,000 men a year in the UK undergo surgery — either using a laser to destroy the excess prostate tissue, or cutting it away.

Professor Roger Kirby, president of the Royal Society of Medicine and recently retired as one of the UK’s leading prostate surgeons, is one of those calling for change.

He told Good Health: ‘It’s estimated that there are about 10,000 men out there right now with catheters in, waiting for an operation. They’re not seen by the NHS as especially urgent.

‘But if you have a catheter you’re more at risk of urinary tract infections and a small percentage of those lead to sepsis, which can be fatal.’

Professor Kirby has experience of how debilitating catheters can be. ‘I had one for a while a few years ago following prostate cancer surgery. At night I couldn’t sleep because I was so worried I might disconnect the bag and get urine over the mattress and my penis felt sore all day.

‘Meanwhile, you have a bag strapped to your leg full of urine and you worry all the time about infections,’ he says.

‘Many of the men affected don’t like to complain about their situation and just put up with feeling miserable while waiting for surgery — they’re powerless and suffering in silence.’

Richard Hindley, a consultant urologist at Hampshire Hospitals Foundation Trust, says NHS data shows that most men wait an average of 160 days — five to six months for this type of surgery from when they turn up in agony at A&E and have a catheter installed.

Before the Covid pandemic, he says, the average was 90 days. ‘A lot of these men are remarkably stoical about it,’ Mr Hindley told Good Health.

‘It’s not prostate cancer, so they sort of battle on through it having a thoroughly miserable time.

‘But some of them are only in their 50s yet sex is out of the question. It has a huge impact on their psychological wellbeing.’

Mr Hindley and other concerned colleagues recently published a report in the journal Trends in Urology and Men’s Health highlighting the problem, and calling for bladder obstruction surgery to be upgraded to priority level 2 under the system for ranking NHS procedures.

It means they should be completed within a month of doctors ruling surgery is needed. Bladder obstruction in most parts of the country is at priority level 3 — i.e. the target is three months. 

In reality, experts warn, even the current goal is rarely achieved. The report adds that catheter-related infections currently cost the NHS more than £54 m a year to treat.

Adding to the problem, it says long-term use causes the bladder to shrink, through lack of use of the muscles, by more than a third within the first year. Men are then left needing to urinate a lot more often as their bladder holds less.

‘When a man has a catheter, the bladder is just sitting there empty most of the time and so loses its elasticity,’ says Mr Hindley.

Delaying surgery may also result in poorer outcomes, according to a new study in the Journal of Urology by doctors at Massachusetts General Hospital in the U.S..

They tracked more than 17,000 men aged over 40 who had surgery for bladder obstruction caused by BPH: the surgical failure rate — where the operation did not sufficiently ease the blockage — was almost twice as high (33 per cent) in men who had catheters for longer than six months compared with men who didn’t need one or used one only briefly (17 per cent).

Professor Kirby says: ‘There are 7.6 million people awaiting surgery on the NHS and obviously priority goes to cancers that cannot be left too long or life is endangered. But catheters can be life-threatening if they cause infections that lead to sepsis and they also have a massive impact on quality of life.’

Arnie used life savings to pay to have his prostate surgery done privately (for around £10,000) in July this year. ‘I was very lucky that I could afford to go private but I fear many men will have no choice but to bear with it,’ he says.

‘I still have lingering problems because the muscles that control my bladder wasted away during the months it was in. But everything is so much better — I’ll never forget the pain of having a full bladder and not being able to go.’

HOME REMEDIES – DIY treatments that really work

This week: Stretch your foot to ease plantar fasciitis

The painful condition is caused by inflammation to the plantar fascia — the thick tendon at the heel base that acts as a shock absorber — from walking or standing for long periods.

A 2003 study by the University of Rochester in the U.S., published in the journal Bone and Joint Surgery, showed a simple stretch reduced pain even in those who’d had the condition for as long as ten months — and, in a two-year follow-up, 92 per cent of people were still pain-free.

Put your painful foot on the opposite knee. Using the hand on the affected side, hold the foot and pull the toes back toward your shin. Hold for ten seconds, repeat ten times.

‘You cannot perform this stretch too often,’ says Tariq Khan, a consultant podiatrist at University College Hospitals London. ‘But the most important times are first thing in the morning and after a prolonged period of sitting.

DID YOU KNOW?

People with dementia are still able to learn new things despite their illness, according to a study by Linköping University in Sweden.

Ten dementia patients were given tablet computers for the first time in their lives and told to use them as they wished.

They gradually learned to operate them independently and chose activities based on their interests and by collaborating with other patients.

The lead researcher Elias Ingebrand said this debunks commonly held beliefs about dementia and results are valid for other forms of learning, which should be actively encouraged for those with the condition.