Lois Rogers

Journalist and Communicator

Horror stories of post baby op that can ruin lives

Health

http://www.dailymail.co.uk/news/article-4575510/Your-horror-stories-post-baby-op-ruin-lives.html#ixzz4jtMkMvvU

  • Women have been damaged by a mesh to treat post-childbirth incontinence
  • It causes a variety of side-effects including crippling pain and infection
  •  Yet the NHS has continued to give the implant a clean bill of health
  • Here, some of the many who’ve contacted us tell their stories

 

Women damaged by a mesh designed to treat post-childbirth incontinence have finally been offered a glimmer of hope after enduring years of misery. As Good Health has repeatedly reported, many have suffered as the plastic mesh disintegrated into fragments which slice like cheesewire into surrounding flesh, causing crippling pain and infection, worsened incontinence, difficulty walking and, for some, the end of their sex lives.

Yet despite all this, the NHS has continued to give the implant a clean bill of health. And then earlier this year, a Scottish Government investigation rejected calls for the material to be banned.

But following growing anger about the report — including concerns that data showing the meshes often go wrong wasn’t properly included — the report is to be reviewed, the Scottish health minister Shona Robison has announced. It’s a move that gives hope to victims south of the border, too.

‘This review should reveal the first investigation was a total whitewash, which hid relevant data,’ said Kath Sansom of the English pressure group Sling The Mesh, which has almost 2,000 members, many of whom are taking legal action.

‘A complete ban on its use would have to come from the Medicines and Healthcare Products Regulatory Agency in London, but the Scottish Government can suspend the use of the mesh in Scotland. If it does that, NHS England would have to do something similar.’

The mesh, also known as tension-free vaginal tape (TVT) is meant to support pelvic organs to treat post-childbirth incontinence or prolapse. While it has helped some women, for others it’s proved disastrous.

Studies in The Lancet and in Nature have reported that up to one in six women suffer problems within two years of receiving the mesh. Other studies have shown even higher complication rates.

Campaigners said data drawing attention to the failure rate were concealed in annexes or published elsewhere, so the March review appeared without them. One entire critical chapter said to be the work of Wael Agur, a specialist urogynaecologist from Glasgow University, isn’t in the final document.

Dr Agur, who resigned from the committee collating the data shortly before publication, declined to comment. The chairman, Dr Lesley Wilkie, who also resigned last autumn, refused to say why.

In addition to calling for a ban on new operations, the campaigners want a central register to monitor patients, as some are affected a decade or more after the surgery.

Marcus Drake, a professor of physiological urology at Bristol University, who is unconnected with any Government review, acknowledges more needs to be done to establish the number of cases where the tape breaks up, but he also believes in the right hands, the surgery can be very successful.

‘Most women seem to get on well with this type of surgery,’ he said. ‘But I advise women considering it to weigh everything up. Unless the severity of your symptoms is truly affecting your life, tell your surgeon you don’t want surgery.’

Sohier Elneil, a gynaecologist at University College Hospital, London, who specialises in removing the fragmented mesh, says she sees up to 20 patients a month: ‘This is a big problem. Women have not been informed of the consequences of having this material implanted.’

Crucially for the NHS, the mesh is substantially cheaper than the colposuspension tissue repair operation it replaced.

The tissue repair, which involves stitching the neck of the bladder to surrounding structures, is a highly skilled operation, while the tape can be inserted in a procedure taking just 20 minutes. One NHS report calculated the cost saving at £377 per patient. Critics say the high complication rate associated with the tape cancels out such savings.

NHS England has been conducting its own safety review for more than three years: a spokesman insisted a report would be published later this year.

That will be little comfort to those living with the effects of the surgery. Here, some of the many who’ve contacted us tell their stories …

IT’S KILLED MY SEX LIFE AT JUST 41

Kate Langley, 41, a former childminder from Pevensey, East Sussex, is married to Daniel, a kitchen fitter; they have two children, Joshua, 15, and Jessica, seven. Kate had the surgery in October 2012 and has been taken to hospital 53 times, admitted for up to 12 days at a time.

Sometimes the pain has been so bad it’s as if my insides were being ripped apart. I had so many scans and investigations which showed nothing: I now know that the mesh is only visible on a translabial ultrasound scan.

Two months after my operation I even had my gallbladder removed as doctors thought it might be the problem, but it did nothing to ease the pain: likewise my hysterectomy in October 2014.

When my specialist first suggested TVT surgery I’d got to the stage where I had to wear incontinence pads so I thought: ‘Great! I can get back to normal life.’

But four days afterwards, I was readmitted with agonising pains. I was in and out of hospital over the coming weeks, always in crippling agony. The ongoing discomfort made it difficult for me to walk.

A couple of years after surgery, I also began suffering with urinary tract infections every few months.

Two-and-a-half years after the op I had to give up my childminding business, due to spending so much time in hospital. They didn’t discover the problem was the mesh until April 2015 — that September, rather than have a long wait to have it removed on the NHS, I saw a private surgeon my wonderful extended family paid for: I was told the mesh had torn into my bladder, urethra and a main nerve.

But even now that most of it’s out — it couldn’t all be removed as it was so embedded — they think I will always have pain.

My sex life has ended and I’m only 41, so that puts a strain on our marriage. My not working hasn’t helped either as we’re in debt.

Still, I’m incredibly lucky because my husband loves me.

In April last year, I had the old-fashioned colposuspension surgery to fix my incontinence. Although I still have pain, I haven’t needed to be rushed to hospital. That’s at least something — and I hope to be able to start working from home again soon.

I’ve still got a small piece of mesh so close to a main artery it’s too dangerous to remove. This really hits home just how dangerous this mesh is: When it goes wrong, it goes horrifically wrong.

I HAVE TO USE A WHEELCHAIR

Lisa Woodrow, 53, a mother of two adult sons and a former sales and marketing manager from Thetford, in Norfolk, had the surgery five years ago.

I remember joking with my partner, Tim, that I’d be ‘like a new woman’ after the operation. In fact the changes in me would all be very much for the worse.

Since I’d had children, in my early 20s, I’d suffered from leaks, which could be embarrassing, and I had to wear incontinence pads. I also had a prolapsed uterus so sex could be uncomfortable. When I heard about TVT, I didn’t hesitate. But soon after the surgery it was clear something was very wrong. I had constant pain in my left side until May 2015 when it was finally removed, and bled for a year.

It was difficult to walk and I had repeated urinary tract infections. My job was very demanding, and involved a lot of travel, so I had to give it up, and I haven’t worked for almost two years now.

One morning 3½ years after the surgery, I collapsed in pain and had to be rushed to hospital.

I was in hospital for six weeks — no one could tell me what was wrong. I then paid to see a private urogynaecologist, who said the mesh had cut through tissue in my vaginal wall and urethra.

I wept at finally having an explanation: because no other doctor I’d seen could explain it, I’d begun to think I must be going mad.

Shortly after my collapse my partner told me he didn’t love me and, in a way, I couldn’t blame him: we couldn’t make love and I sat like a zombie in my wheelchair most of the time.

By that stage I’d lost almost everything and it was unbearable: In January 2016, I went as far as writing a suicide note. But my family mean the world to me, so I couldn’t go through with it.

After I had the mesh removed last year, my pain levels went down. However, I need a wheelchair if I have to walk further than 25 yards and my incontinence is now even worse and I am in constant pain.

The mesh surgery is the worst thing that’s ever happened to me.

‘MENOPAUSE’ WAS DUE TO THE MESH

Karen Murrell, 49, a school administrator and divorced mother of two lives in Rainham, Essex. She had her mesh fitted seven years ago.

The first sign something was wrong came when my husband and I made love a month after the op.

He felt something sharp and said: ‘Oh my God, have you had teeth put up there?’ I went back to my consultant who cut off a bit of the tape that was ‘poking through’.

Over the next couple of years, I developed constant back and leg pain; then I started suffering dizziness, like I was going to pass out. Every few months, I’d get a urinary tract infection.

I put it down to getting older. But one morning last December I was in such intense pain I went to hospital: a doctor found more tape poking through into my vagina.

The mesh was removed by a specialist last month and she told me it was infected, covered in pus. She thinks I’ve had the infection since the op — that explains why I’d often wake up sweating, something I put down to the menopause. I now feel much better. I’m one of the lucky ones, some women have been left disabled.

MY DOCTOR SAID THAT THE TERRIBLE PAIN WAS JUST IN MY MIND 

Cynthia O’Neil, 69, a retired secretary, is divorced with three grown-up children and lives in Yorkshire. She was fitted with a mesh implant in October 2009.

When my gynaecologist patted me on the shoulder and said: ‘I think your problems are all psychological,’ I felt so angry. I’d been living with what felt like broken glass digging into me for two years. How dare he say I was imagining it!

I’d first been to see him after suddenly developing problems emptying my bladder in January 2009. He diagnosed a bladder prolapse. After physiotherapy didn’t work, he suggested a ‘sling’ operation using a plastic mesh to support my bladder. He said I wouldn’t know it was there.

The surgery proved to be a big mistake — the pain afterwards was terrible; sometimes I was doubled over with it. Intercourse became impossible because it was too painful and I was totally uninterested. My partner and I split up in 2012. For four years after the operation I went back to my gynaecologist about the pain, but he was very dismissive and said it wasn’t related to the mesh.

Then when he found a piece of mesh protruding into my vaginal wall he said he would remove it there and then: to my horror he put my feet in stirrups and with no anaesthetic put scissors in my vagina to trim the mesh. It felt every bit as bad as it sounds. I went back again a few weeks later and this was when he said my problems must be psychological.

So I went to see a urogynaecologist in October 2013. She found three more pieces of mesh had broken off —‘eroded’.

The next month I had the left side of the mesh and three pieces of eroded mesh removed.

This only provided temporary relief, but when I asked if the rest of the mesh could be removed the surgeon said she’d need to perform it with a bowel surgeon because I might need a colostomy. I wasn’t prepared to take that risk, so now I’m just left with taking painkillers.

It’s made me feel very depressed and isolated. I could have put up with my original bladder problem — I wish I’d left well alone.

This has been a nightmare. The past six years of my life have just passed me by.

I feel very let down by the NHS. I just want some acknowledgement that these devices cause more harm than good.

Interviews by HELEN CARROLL and JO WATERS

 

 

Written by Lois Rogers