Agony of the forgotten mesh victims: New battle for patients with lives ruined by implants for bowel problems
Jacqui Shaw used to be the life and soul of the party. Even a hysterectomy in 2001 aged 32, after having two sons, didn’t slow her down.
She bounced back — running after her boys, Dan, now 28, and Sam, 24, and having fun with her beautician colleagues.
Those days are long gone. Jacqui, now 54, finds it hard to walk upstairs or do tasks such as ironing, and has pain all over her body 24/7, like a ‘blanket of fog that never lifts’.
A trip out near her home in Stoke-on-Trent with husband Mark, 54, who runs a window frame business, leaves her in agony for days.
‘My life is totally different from how it used to be,’ she says. ‘Before lockdown, if we went out with friends and everyone got up to dance, it would kill me as I knew I couldn’t because it would cause me too much pain.’
Jacqui, now 54, finds it hard to walk upstairs or do tasks such as ironing, and has pain all over her body 24/7, like a ‘blanket of fog that never lifts’
Jacqui’s life has been blighted by two operations — one in September 2008 and the other in January 2009 — to fix a post-childbirth bowel prolapse, or enterocele.
The first, a laparoscopic ventral mesh rectopexy (LVMR), involved putting flexible mesh along the rectum and attaching it to the base of the spine with metal pins, to raise the bowel and hold it in place — ‘like a sling’.
This was followed by a STARR (stapled transanal rectal resection) procedure, in which a stapler-like device cuts away the slack in the rectal wall.
But in 2016, after her prolapse re-occurred, scans showed the upper section of the polyester mesh had rolled over and hardened so it looked ‘like a brandy snap’. The lower section was also hardening.
Jacqui had the mesh partially removed in 2016 — and likens what remains inside her to a ‘ticking time bomb’.
‘I don’t know when the mesh is going to get so hard it will erode completely through the walls of my rectum,’ she says.
‘It’s already starting to happen, and protrudes into the vaginal vault which causes deep period-like pain.’
Jacqui had the mesh partially removed in 2016 — and likens what remains inside her to a ‘ticking time bomb’
Austin Obichere, a consultant colorectal surgeon in London, says, in some cases, the ‘mesh incorporates with the rectal wall and you find one composite combination of the mesh and the rectum’.
‘The mesh can also erode tissue from the rectum to the vaginal wall and create a passage such that these women are passing poo into their vaginas. It’s extremely distressing for them. The complications of mesh rectopexy can be extremely serious.’
Surgical mesh — also known as tension-free vaginal tape (TVT) or transobturator tape (TOT)— was widely used in the 2000s to treat pelvic organ prolapse, urinary incontinence and rectal prolapse.
But its use has been mired in controversy, with some women suffering terrible pain, chronic infection and nerve damage as the implants disintegrate inside them, slicing into the soft tissue they were meant to hold in place.
Following pressure from campaigners, backed by Good Health, vaginal mesh operations were suspended in 2018 in England and, last July, an independent review by former junior health minister Baroness Julia Cumberlege recommended the establishment of seven specialist regional mesh centres to ‘provide comprehensive treatment, care and advice for those affected by implanted mesh’.
Crucially for Jacqui, Baroness Cumberlege suggested the centres could treat ventral rectopexy patients alongside those who’d had the more common vaginal mesh surgery. However, Good Health can reveal that while seven have been running since April 1, they are solely for those with mesh inserted for urinary incontinence and vaginal prolapse.
Labour MP Emma Hardy, co-chair of the All-Party Parliamentary Group on Surgical Mesh, says ‘rectopexy mesh-injured patients are the forgotten mesh victims’.
Jacqui’s problems began after ventouse deliveries of both her sons (in 1992 and 1996) led to a vaginal prolapse and hysterectomy in 2001. In 2007, she developed a bulge in the perineum area which caused bowel problems.
Her GP referred her to a consultant who referred her on to a surgeon. ‘I just felt really lucky the surgeon would be able to fix me,’ she says. ‘I was told the surgery would be gold standard.’
But when Jacqui woke from her operation, the bulge was still there. The surgeon recommended ‘a tweak’, and four months later she had the STARR procedure.
‘The operation was successful in that the bulge was gone,’ says Jacqui. ‘I’d been warned I might have some urgency to have a bowel movement, but it lasted 24/7. It took about 12 months to settle to a point where I knew how to manage the urges.’
Over the next four years, Jacqui began to suffer the same symptoms many women who had TVT mesh report — pins and needles, numbness in limbs and back pain.
Her underactive thyroid symptoms also worsened — ‘everything was falling apart,’ she says. But it wasn’t until her prolapse returned, six years after her last operation, that alarm bells started to ring.
She saw her consultant, who confirmed the mesh had failed and offered to add a new mesh. But this meant, says Jacqui, ‘I’d have to sign to say I accepted I may wake up with a stoma’. This is an opening in the abdomen to allow faeces to be diverted into a colostomy bag.
Suspecting all her unexplained symptoms might be mesh-related, Jacqui turned to the internet, finding Sling the Mesh, a support and pressure group for women with mesh complications, and read about consultant urogynaecologist Sohier Elneil, and saw her for a second opinion in London.
After an internal investigation Ms Elneil told Jacqui that the top part of the mesh ‘was rolled up and rock hard’. Jacqui adds: ‘It was on my right-hand side, where I had a huge pulling pain that made me walk with a stoop.
‘She said it looked like the mesh had been inadvertently stapled into the rectum and anus during the STARR procedure.’ Removing the mesh would mean cutting out the rectum. The mesh had also stuck to her right ovary, fallopian tube and bladder. ‘I was shell-shocked,’ says Jacqui.
Ms Elneil removed some mesh, which helped alleviate the pulling sensation, but it couldn’t all be taken out without risking the need for a stoma. Four years on, Jacqui is still in daily pain and on painkillers.
‘The bulge is still there and the only way to get rid of it is to have the rest of my mesh removed,’ she says. ‘I’d lose what is left of my rectum and end up with a permanent stoma. I’m terrified when I go to the loo and my sex life is non-existent.’
The complication rate for vaginal and pelvic mesh is estimated to be 9.8 per cent. But when it comes to rectal mesh operations, no one knows exactly how many operations have been carried out or the complication rate.
In 2019, the Healthcare Quality Improvement Partnership, an independent body that aims to improve health outcomes, estimated that 750 mesh rectopexies, which were never banned, have been carried out each year in the UK since the late 2000s.
The Pelvic Floor Society of surgeons puts the rectopexy mesh complication rate at 1 per cent, but campaigners think it’s higher.
Kath Sansom, of Sling the Mesh, says: ‘All mesh is bad, but with most types they have a vague idea of insertion rates; but with rectopexy not at all.
‘Sling the Mesh fought to have rectopexies included in the review, but now they are saying rectopexy can’t be part of the specialist centres. To know these women have no hope is upsetting.’
Ms Elneil, adds: ‘The advantage of the specialist mesh centres is that they have the colorectal surgeon, the urogynaecologist, the urologist, the chronic pain specialist, the physiotherapist.
‘Mesh rectopexy patients present such complex, myriad symptoms, so they need all those people to help them.’
Jacqui is furious she cannot get help from a new specialist centre.
‘My mesh is eroding and it’s crippling, but I am now in limbo.’
An NHS spokesman said: ‘NHS England commissions services for women for mesh removal related to vaginal and urinary prolapse and is currently considering the commissioning of care and support for people who experience complications in the use of mesh in rectopexy.’
Medical metaphors
Turns of phrase that have scientific truth. This week: Positive outlook
People who are more open and agreeable might have a different ability to process visual information, according to research carried out in 2017 by Melbourne University in Australia.
Volunteers were asked to fill out a personality questionnaire before taking a visual test involving swapping looking at a red image with one eye, then a green image with the other. The exercise usually leads to the viewer seeing one image that flips between red and green, as your brain can only understand one image at a time.
But the scientists found that the participants who were more open in the personality quiz were better able to see the patchwork effect — possibly indicating they have more flexible brains, reported the Journal of Research in Personality.
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