Emily May loved nothing more than a refreshing early morning swim on a deserted beach. ‘I used to go down there with my friends at 6am on summer mornings when no one else was around,’ she says.
Those idyllic days from less than a decade ago, when Emily was a promising fashion design student in Cornwall, are now a distant memory.
Since then Emily’s life has been wrecked. She has been left unable to go out to work or become pregnant, she says, because of damage following a series of botched operations that put Britain’s health regulators to shame.
She has been left with a stoma — a hole in her stomach to divert bodily waste into a plastic bag attached to her body — and also has a grotesque complication meaning up to eight inches of her bowel regularly falls out of her body through this same hole.
The only way to deal with it is to lie on her back and wait for gravity to funnel it back inside. She has to spend much of the day lying down.
When she had the operation Emily, now 30, did not know this was a procedure generally performed on elderly people with limited life expectancy, or that there are few studies showing the performance of the plastic mesh implanted in the body — or the long-term consequences of the surgery in patients as young as her.
Without a surgical miracle to repair the damage she has suffered, her dreams of motherhood — or, indeed, any sort of normal life — have been shattered.
She is among a group of patients to have complained of crippling pain after they received implantable surgical mesh to treat bowel problems.
The material used is the same as the controversial gynaecological mesh used to repair post-childbirth urinary incontinence. In some women this material has fragmented and ‘migrated’, leaving many in permanent, agonising pain.
For many years Good Health was a lone media voice raising the distasteful issue of botched repairs with vaginal mesh on women damaged by childbirth.
Our campaigning finally helped compel the Government to investigate the scandal. Its inquiry began in February 2018 under the leadership of former health minister Baroness Julia Cumberlege and is still ongoing.
Meanwhile a surgeon called Tony Dixon, working in Bristol, was dismissed by his health trust earlier this year following an investigation into botched bowel mesh operations on up to 143 patients, owing to a combination of problems with the mesh material and inappropriate surgery.
Most of the patients — who were being treated for prolapse — have been left crippled and at least 90 are taking legal action.
Members from the Pelvic Floor Society of specialist surgeons apparently assured Baroness Cumberlege they were already doing everything possible to ensure no other patients were exposed to risk.
Now Good Health has discovered that very young women, including a girl of 15, have been channelled — in some cases without proper consent, it’s alleged — into disastrous and probably unnecessary surgical mesh repairs for problems of constipation.
Emily’s story is particularly awful. ‘In about 2014 I started suffering very bad constipation that was really affecting my life,’ she says. ‘I was told I had a condition called internal rectal prolapse, where the bowel telescopes in on itself [i.e. collapses in on itself].
‘The only way to treat it was with a keyhole operation called laparoscopic ventral mesh rectopexy [LVMR], where they insert a kind of artificial mesh which is attached to the base of your spine with metal clips and holds everything back in its normal place. I was referred to specialist surgeon Ian Lindsey for NHS treatment.’
Unbeknown to Emily, Oxfordshire Clinical Commissioning Group had already announced, in July 2012, that it would no longer fund LVMR because of a ‘lack of evidence of long-term clinical and cost effectiveness’.
Emily, a freelance fashion designer who lives with her husband in Faringdon, Oxfordshire, was told the procedure she needed was only available privately.
She borrowed £6,000 from her father and had the mesh operation with Mr Lindsey in March 2015. She says it was immediately clear the procedure had gone badly wrong.
As well as being in agonising pain, Emily remained unable to walk properly or use a loo. Within weeks she says she felt the mesh and the clips that had fixed it to the base of her spine had come adrift inside her body.
‘I went for the follow-up and they said everything would settle down,’ she says. ‘They discharged me and said I had had a good result — but I was in the worst pain.
‘I tried to go back to work but I just couldn’t do it. I was sick and exhausted all the time and commuting 90 minutes twice a day, so I handed in my notice.
‘I went back to see Mr Lindsey —again, privately — after six months and told him I was still in pain and couldn’t go to the loo properly.’
The surgeon said he would need to repeat the operation. Desperate for relief, Emily went under the knife again in December 2015.
‘Afterwards, Mr Lindsey said the 20cm mesh had moved and rolled up like a cigarette, but he didn’t, or couldn’t, take it out,’ says Emily. ‘He said it would dissolve over time and he just put a second mesh in.’
But her bowel function worsened and she ended up in A&E, having not gone to the loo properly for months.
‘Mr Lindsey said I needed an ileostomy to divert the bowel contents through the stomach wall into a stoma bag,’ says Emily. ‘The idea was that it was a temporary solution before I went to see his “expert revisional colleague” Mr Dixon.
‘After having the stoma, I was in hospital for three weeks. I lost 2½ st and was very unwell and very scared. I was being sick all the time as the stoma didn’t work immediately.’
Luckily, it started working after a few weeks, in time for her wedding. ‘The stoma relieved the pressure on my stomach but I was very weak. I ended the day crying,’ she says.
‘I just felt I wasn’t myself any more. We never even made it to the hotel we had booked for our wedding night.’
Soon after, Emily suffered a further complication when up to eight inches of her bowel, now permanently damaged from the two operations, began to fall out through the hole in her stomach.
Emily says Mr Lindsey twice referred her to his Bristol colleague Mr Dixon, and she had to pay £200 a time to see him privately because she was told there would be an indefinite wait for a NHS appointment.
Mr Dixon was suspended before carrying out any revision surgery. Emily has since had a series of repairs to the malfunctioning stoma and been admitted to A&E with blockages of the stoma.
‘We only had our honeymoon this year, in Greece,’ she says. ‘It was the first time I had been abroad since all this happened. I managed to get into the water twice but I didn’t swim.
‘I’ve since been told by other doctors my problems could have been treated with conservative, non-surgical measures — but it’s too late for that now.
‘I wanted to have children but carrying a pregnancy and giving birth with these health problems is potentially dangerous for me. Mesh removal is too risky to attempt, but without doing that they can’t reverse the stoma — which is also very risky.
‘I wrote to the hospital and asked if they had reported the problems with the defective mesh to the Medicines and Healthcare products Regulatory Agency (MHRA). They said all correspondence must come through my solicitor.
‘Last year my MP, Ed Vaizey, wrote to them on my behalf and they confirmed they had not reported to the MHRA the fact that the mesh had detached and rolled up. I’ve no idea what the future holds for me.’
Sharron Mahony, 51, a mother of two from Daventry, Northants, who works from home as a marketing consultant, is similarly affected. She has had to have £40,000 worth of private treatment to repair damage she says was caused by Mr Lindsey, and is having to sell her house to pay for it.
‘I had slight incontinence problems ever since the birth of my second child in 1997 and was referred to Mr Lindsey in 2009,’ says Sharron. ‘He said I had a grade four prolapse, which is as bad as it gets without the whole lot falling out of your body.
‘I was so pleased he was going to fix me. I totally bought into him and completely trusted him to perform the LVMR surgery I needed.
He never spoke to me about the possibility of more conservative measures. Nothing else but mesh would work, he said.
‘I was very vulnerable at the time. My marriage had failed and I was starting a new relationship. I thought he [Mr Lindsey] was my hero and he was going to fix me.
‘The operation was done in May 2010 via keyhole incisions into the abdomen. They separate the bowel from the vaginal wall and put mesh between them, and then staple the mesh to the sacrum (base of the spine) to support the rectum.
‘I was out of hospital the next day, but the incontinence was not cured and I had sharp shooting pains up my insides.
‘He said it was a bowel spasm that was perfectly normal. But I would have to get down on all fours and breathe out as if I was having a baby. It was agony and it definitely wasn’t normal. The ongoing pain is now less of a problem than everything else.
‘Over the years I developed more and more problems — anaemia, rheumatism, fatigue and dry eyes, then my throat became so dry it would close up. Now, I know it was the mesh causing my immune system to attack itself.
‘I finally had it removed in a complicated private operation in London in December last year. The surgeons found no LVMR had been performed and there was no evidence of a prolapse at all. In fact, the mesh had been put in a different place.
‘Ten months on from my repair surgery and gradually getting better, I realise I consented to a procedure I didn’t need to fix a problem I didn’t have.’
It was only in June last year, after publicity over the complaints by Mr Dixon’s patients, that the National Institute for Health and Care Excellence (NICE) issued guidance.
‘Current evidence on the safety of [LVMR] is limited in quality,’ it said. ‘Therefore, this procedure should only be used with special arrangements for clinical governance, consent and audit or research.’
Good Health has been contacted by eight of at least 22 women claiming they have been injured by Mr Lindsey and who have formed an online support group. At least five of them, including Emily and Sharron, have confirmed they have complained to the General Medical Council, which regulates doctors.
The GMC has declined to investigate Mr Lindsey’s practice but a spokesman would not say why, nor how many complaints it has had
The Pelvic Floor Society said that while the complications can be ‘very serious’, a ‘relatively small number’ of patients are affected, and stopping doing the operation would mean a much greater number being denied ‘potentially life-changing surgery’.
The LVMR mesh surgery register is voluntary. Only 95 surgeons have signed up to it, despite there being 749 specialist bowel surgeons who can do this op in the UK.
Linda Millband, of Thompsons Solicitors, is representing ten of the women taking legal action. ‘In addition to botched surgery, there’s evidence of the implanted surgical mesh causing additional damage and the wrong type of material being used,’ she says.
‘These mesh operations have been done without considering non-surgical solutions first and without patients being warned they would be unable to give birth normally, or in some cases even conceive.’ Some claims could be worth £250,000.
Kath Sansom of the pressure group Sling the Mesh for women with vaginal mesh problems, says almost one in five of her 8,000 members have suffered from rectal or hernia mesh.
She adds: ‘These patients are suffering the same life-altering complications but their voices are not being heard.’
Mr Lindsey did not respond for comment. Oxford University Hospitals Trust said it knew of only three GMC complaints against Mr Lindsey, ‘all of which were closed by the GMC with no further action recommended. There are no outstanding GMC complaints.’
It also said the LVMR procedure had been on offer in Oxford between 2003 and 2012 but the spokesman could not say how many had been done or how many had gone wrong.