At 79, Pearl Oakley worries she is doomed to spend the rest of her life in pain and housebound as a result of an operation she had 20 years ago for incontinence going horribly wrong.
Christine Doppelt, who is 76, lives in constant fear of the return of the searing agony she endured for years after a similar surgical catastrophe. She found an NHS specialist who was able to help her, but he has since moved to Singapore.
Jackie Harvey has only avoided Pearl and Christine’s fate after spending £7,000 on expert private surgery.
Helen, who has graced the pages of Tatler magazine but spoke to Good Health on condition of anonymity, is half way through an extensive series of even more costly private surgery to repair the same problem.
These four are just some of the more than 6,000 women left maimed or crippled by the use of plastic mesh implants — introduced as a cheap operation for those with incontinence or prolapse.
After almost a decade of campaigning by Good Health, the NHS has admitted the material can ‘migrate’ and disintegrate, becoming embedded in tissue.
Last July, it said that the tape should not be used for urinary incontinence.
NICE issued new guidance last week saying that mesh should still be an option for women who have not responded to non-surgical measures for stress incontinence but that they ‘should be fully informed of the risks’.
The guidelines now recommend, too, that women with ‘suspected or confirmed mesh-related complications’ should be investigated by consultants in centres specialising in treating these issues.
But there has been no coordinated effort, as yet, to train surgeons in how to remove the mesh without causing further damage. It is complex surgery and there are concerns about the procedures some women are being offered.
‘Although a number of specialist surgeons have developed expertise in the technique, opinions vary about who has the correct skills and which doctors’ organisations should provide mesh removal training and who should validate it,’ says Mohammed Belal, a consultant urological surgeon at University Hospitals Birmingham NHS Foundation Trust.
In the meantime, thousands of women damaged by the mesh have little idea where to turn for help.
Up to one in four women experiences injuries to pelvic organs during childbirth. While most recover, thousands go on to suffer lifelong incontinence.
In the past, this was treated with skilled and complex procedures using the woman’s own tissue to construct a ‘sling’ to support the womb or bladder.
Plastic mesh tape was introduced 30 years ago by the NHS as a cheap alternative, but there was little testing of its long-term safety before it was put on the market.
Although there are no records of the number of women who have had it, they are believed to number more than 100,000.
Many have had no problems with the implant, but in others the tape has moved and disintegrated, its tiny razor-like fragments slicing into muscles or nerves, piercing the vagina, bladder and bowel.
As well as pain and incontinence, some women have suffered such severe damage to nerves that they struggle to walk.
Until Good Health began reporting these damaged women’s problems, doctors routinely dismissed their complaints.
Jackie Harvey, 50, a mother of two, runs a support group for 600 other affected women in Northern Ireland
Pearl, a twice-divorced mother of four, who is a retired auxiliary nurse from Himley, West Midlands, says she has been in ‘constant agony’ for years.
‘This mesh has curtailed and dominated my life,’ she says. ‘I had three of them implanted, one on top of the other, about 18 months apart. The first one was inserted in about 1989, when the product was in its infancy. Frankly, I think I was used as a guinea pig.
‘None of them cured the problem, and all three are still in situ.
‘I’ve been told the mesh has grown into other organs and cannot be removed.
‘I try to keep my problems covered up but I always have to carry spare clothing. I don’t seek out company and I have become quite isolated because I never know when I’m going to be embarrassed.
‘When I said none of them had worked and I was now suffering pain as well as incontinence, the surgeon got impatient with me.’
The only option left for Pearl is a sacral nerve stimulation device — which is similar to a pacemaker and produces an electrical signal to prevent the incontinence.
‘Afterwards, you can’t bend or pick things up off the floor and apparently these gadgets set off alarms in shops and other places,’ says Pearl. ‘I honestly think that at my age I can’t take it.’
Christine, who lives in Fulham, West London, and is a retired psychotherapist, has been similarly incapacitated since she had the mesh inserted in 2002.
‘I have been told it’s far too dangerous to try to take it out,’ she says. ‘I could end up with a colostomy bag, which is not an attractive prospect at all.
‘I have had a huge amount of pain — every time I went to the loo, and constant urinary tract infections from it,’ she says. ‘It turned out the mesh was eroding into my urethra.
‘It was treated by burning or melting bits off the plastic with an internal laser, which has been done four times. The first was ten years ago. I had a second procedure six months later and a third two years after that.
‘Then more bits started to stick into my bladder, and I had a fourth laser treatment five years ago. Now, every time I get a twinge, I worry I’m in for more agony.
‘I found a specialist urogynaecologist at St George’s Hospital in Tooting, South London, who knew how to do the lasering. But he went to Singapore and I worry that if it happens again there will be no one who knows what to do.’
Helen, 54, who has three children and lives in Sussex, says she had the mesh put in ten years ago for stress incontinence.
‘At first it seemed to work, but within six months it moved out of place and I began to have problems going to the loo,’ she says. ‘I started getting urge incontinence, where the bladder goes into a spasm and shoots urine out at high pressure. It was terribly painful because your bladder is trying to expel it faster than it can.
‘I was diagnosed with irritable bladder syndrome and for years I had treatment every six months to stretch my bladder, but the symptoms just got worse.
‘Sex became incredibly painful but I was told that was all down to the menopause.’
Helen finally went to see a specialist who discovered the mesh was strangling the ureter where it goes into the bladder.
‘On the ultrasound, it looked like a grape — so swollen that it was about to burst,’ she says.
‘And some of the tape was sticking into my vagina, which was why sex was painful.
‘I had swelling round my ankles, wrists and face; my ankles looked as if they were broken. This was because the urine was being pushed back into my kidneys and causing inflammation and fluid retention.
‘The surgeon said he would take out all the tape, which would get rid of the pain, but that the incontinence would return because my bladder wouldn’t be strong enough to contain the urine.’ The surgeon explained he would then use some of her labia to replace the tape.
‘I had the first operation and it was a huge success — the pain has completely gone and I look as if I have lost half a stone,’ says Helen. ‘At the moment my bladder can’t hold more than a teacup of urine — but at least I’m not in pain and it doesn’t come shooting out.’
Jackie, 50, a civil servant and mother-of-two who lives in Banbridge, Co. Down, Northern Ireland, set up an Irish branch of the women’s pressure group Sling The Mesh in 2016. Within three years her network grew from 50 to 600.
Jackie had the mesh implanted after giving birth in 2005.
‘It worked fantastically with no side-effects for seven years, then it began to deteriorate and I was in terrible pain,’ she says.
In 2015, she went back to the surgeon — but ‘she refused to believe it was the cause of my pain and said my problems were nothing to do with the mesh’.
Jackie then paid £800 for an ultrasound scan which showed the mesh was in the wrong place — but still, she says, she wasn’t believed. When a rheumatologist diagnosed her with fibromyalgia — a condition characterised by
widespread pain — she was put on a waiting list to see a specialist. But it was the same specialist who’d already told her there was nothing wrong with her.
‘There was no point waiting to see someone who was almost certain to turn me away again,’ she says. ‘I had a life to live and I wanted to live it.’
Last year, Jackie paid £7,000 to have the mesh removed privately by Natalia Price, a surgeon who also works in the NHS in Oxford and who’d been recommended by other patients.
‘Although it was instant relief from the pain, I’m now getting nerve problems with my back and legs,’ she says.
Helen is due to have an expert pelvic repair with the old-fashioned stitching method, using the patient’s own tissue. However, the introduction of the mesh means very few gynaecologists or urologists now have the specialist skills required for this intricate surgery.
More than 6,000 women have come forward via the Sling The Mesh pressure group complaining of damage from implanted surgical mesh.
In July, the NHS agreed to suspend the use of mesh for incontinence but the British Society of Urogynaecology, which represents most of the surgeons using the mesh, then issued a statement claiming 95 per cent of mesh implant operations were problem free.
As things stand, NHS England is still meant to be deciding on the criteria for specialist mesh removal centres.
However, some senior doctors predict that the consultation — which may result in as few as five recognised centres — will lead to a turf war as specialists bicker over who has the right to the jobs and the lucrative NHS contracts.
Meanwhile, a subgroup of the Royal College of Obstetricians and Gynaecologists (RCOG) has circulated a list of 25 centres where there are urogynaecological surgeons.
But in a letter sent to the centres last July, David Richmond, president of the RCOG, warned: ‘Being on the list does not endorse competency but merely compliance with correct personnel and agreement to correct processes.’ Mr Belal suggests there are still going to be long waiting lists.
‘The repairs using the women’s own tissue do not always work, and because of the introduction of the mesh, we now don’t have a sufficient body of people able to do the treatment,’ he says
Kath Sansom, who runs Sling The Mesh, said: ‘We want a national standalone centre where doctors have the right skills and training, and patients can feel safe.
‘At the moment, there are only five specialists in the country who we think have the necessary expertise and we would recommend. We want to see a programme where these surgeons are used to train others.’