Vaginal mesh left me in agonising pain. When will women’s health be taken seriously? | Kath Sansom

In the 21st century it is hard to imagine women being maimed in a surgery with risks that they are not being properly warned about.

This, however, is the reality of vaginal mesh. A net-like implant, it is used to treat incontinence or prolapse, conditions that have often, but not always, been caused by childbirth. Between 2006 and 2016, more than 92,000 women in England have been treated with a polypropylene surgical material that is either inserted as a vaginal tape or a mesh patch.

Women are told they are going for a simple, low-risk operation that takes just 20 minutes.

But there is, in fact, the potential for this operation to leave them using a wheelchair or walking with sticks, with leg pain so bad it feels like intense toothache, constant urinary infections that burn and sting, and having to self-catheterise. Some suffer intense inflammation in sensitive tissues which means they lose their sex lives, and the mesh can slice through vaginal walls, urethras or cut into their bladder.

Problems can emerge quickly, or begin years after implantation.

I set up the support page Sling the Mesh on Facebook two years ago, in June 2015, just 10 weeks after I had a mesh implant to treat incontinence from childbirth. The pain in my legs and feet was so intense, along with burning pains in my vagina – like being cut with a cheese wire – that I knew something was terribly wrong.

When I told my surgeon of the pain I was suffering I was ignored. He told me I must have a slipped disc.

I had walked into the operating theatre as one of the fittest mothers in her 40s you could wish to meet – a keen high-board diver, mountain biker and boxer – and emerged a physical wreck. When I searched online I discovered women worldwide suffering similar problems. All were being ignored, not only by their surgeons but also by the media.

Perhaps this will change now that 800 women are suing the NHS and manufacturers of the implants. These women have all suffered serious complications, however the government watchdog, the Medicines and Healthcare Products Regulatory Agency (MHRA), still says the benefits of this operation outweigh the risks. We know from leaked minutes of a meeting between the MHRA and NHS England in October last year that they are keen to “avoid media attention” over the scandal. It doesn’t seem to be working. Last week, after I appeared on the Victoria Derbyshire show on the BBC to discuss the issue, 200 women joined Sling the Mesh within 24 hours.

This week I was contacted by a lawyer for advice. His client faces having her leg amputated as a result of her mesh implant migrating and causing repeated infections. On the same day three women joined Sling the Mesh; all had lost their bladder because of a simple operation to fix an embarrassing problem. Yes, you read that correctly. Women on support pages globally are losing bladders and bowels, and I estimate more than half the women on my page have lost their sex life.

The majority are told the symptoms they experience after the implant are a mystery. Without the internet we would never have realised that we were not alone.

Some surgeons deny they are putting in a mesh implant when queried by patients, instead calling it a tape or gauze. Or they deny it is plastic. “It is polypropylene” came the earnest reply from a surgeon to one woman earlier this year. (Polypropylene is, of course, plastic.)

The NHS and MHRA say the risk of complications with these operations is 1-3% but a report in the journal Nature by nine leading medics puts that risk at 15%. In the US the Food and Drug Administration recently released figures that said the trocar hooks used to implant the mesh cause injuries for up to 39% of women having a prolapse mesh and 29% of women having a mesh inserted for incontinence.

These aren’t the only problems. Mesh can be fine for years then suddenly shrink or degrade. This happens because the material is not inert – it can change inside the body. Years after implantation it can shrink, twist, harbour infection, go brittle or degrade. Unlike drugs, which have to go through a strict set of three trials, mesh has been approved for use according to a system called substantial equivalence, which means a product can be passed on the basis that there is already something else like it on the market.

Women tell me time and again about how their surgeon told them the risks were very low. Some risks, such as loss of sex life, had not even been highlighted to them, or if they had it was with a quick nod to the medical word dyspareunia (meaning difficult or painful sexual intercourse) and given no further discussion. This is in spite of a Supreme Court ruling in 2015 which stated all surgeons must give reasonable and transparent information to patients about the risks of any procedure.

It is not mandatory for surgeons to report problems to any database and there is no national register, so in truth nobody knows the true scale of this. All I can see as a patient campaigner is women experiencing chronic pain while in many cases surgeons deny the problem has anything to do with their operation. Some go back and forth for up to 10 years before their problems are properly recognised and addressed.

Given the complications, why are so many of these operations still being carried out? One answer seems obvious. Inserting a mesh implant takes 20 minutes as a day procedure under general anaesthetic compared to three hours and up to a four-night stay for traditional surgeries which include the Burch colposuspension (a hitch and stitch) or the autologous sling which uses a piece of muscle from a patient’s stomach wall to make a sling.

It is easy to see that vaginal mesh provides a cost-effective fix.

The traditional fixes have risks, as all surgery does, but the old-fashioned methods do not carry the risk of a piece of plastic shrinking inside the body, cutting into delicate tissues or causing allergic foreign body reactions.

The all-party parliamentary group into women’s health was formed this year to press for women to be treated with dignity and respect. Despite this, some women with the implant feel they are “going mad” after being told there is “nothing wrong”, despite years of painful symptoms, they say. Unlike other devices such as hip or breast implants, mesh embeds into the tissue and is designed to be a permanent implant. Removing it is like trying to get chewing gum out of matted hair.

When undergoing this surgery it is Russian roulette as to whether it will be successful or not. Is that a risk worth taking with a woman’s health?

Vaginal mesh left me in agonising pain. When will women’s health be taken seriously? | Kath Sansom

NHS and medical watchdog tried to suppress scandal over vaginal mesh implants

NHS bosses and the watchdog that oversees medical devices tried to limit public exposure of the scandal over vaginal mesh implants that have harmed hundreds of women.

Minutes of a meeting held in October 2016 show that NHS England and the Medicines and Healthcare Products Regulatory Agency agreed to “avoid media attention” over the implants, despite the fact they were seeking to encourage patients to report any complications.

The document, obtained by the Press Association, records an agreement to “take the press element out” of the “yellow card” campaign to record adverse reactions experienced by vaginal mesh patients, suggesting that it could be folded into a wider effort, “of which mesh is one element, to avoid media attention on mesh”.

The apparent cooperation between NHS England and the MHRA to minimise media focus on the debilitating problems increasingly associated with the implants appears to breach the NHS’s duty – reiterated regularly by health secretary Jeremy Hunt – to be open and transparent over patient safety failings.

NHS England and the Department of Health both refused to comment on the minutes of the meeting.

One possible reason for the NHS to want to limit exposure of the issuecould be to reduce the number of potential lawsuits faced by the health service.

More than 800 women are suing the NHS and the manufacturers of vaginal mesh implants after suffering serious complications, it emerged this week. Some women reported that implants had cut into their vaginas, with one woman saying she was left in so much pain that she considered suicide. Others have been left unable to walk or have sex, according to the BBC.

Vaginal mesh implants are used to treat incontinence after childbirth or pelvic organ prolapse, where the womb or bladder bulge against the walls of the vagina. Between 2006 and 2016, more than 11,000 women in England were given the implants to treat prolapse or incontinence, NHS data shows.

Around 11%-12% of users have reported problems, while lawsuits in the US have already seen around $ 2bn (£1.5bn) paid to affected women.

Campaigners say that hundreds more women have come forward after learning of the group planning to sue.

Kath Sansom, who runs the campaigning website and Facebook group Sling the Mesh, says the number of women contacting her has risen from a few people a day to more than 200 in the past 24 hours.

“It’s always the same story,” she said. “There are so many women who were told it was just them, that they were a one-off. They can’t believe there are others out there. So many people are told it’s back pain, endometriosis, gall bladder pain, scar tissue. And so many of them accept it, you trust medical professionals.”

Data from the MHRA, which has been looking at the issue since 2011 following complaints from women, shows more than 1,000 adverse incidents have been reported in the past five years.

Despite the problems that have emerged the MHRA insists that the best current evidence supports the continued use of the implants to resolve health conditions that could themselves cause serious distress to patients.

A report into the issue from a working party led by NHS England admits there is a huge lack of data on complications from the devices. Published studies on mesh implants do “not tell the whole story” and there are gaps in NHS knowledge about their safety, it added.

NHS and medical watchdog tried to suppress scandal over vaginal mesh implants

What"s your experience of vaginal mesh implants?

More than 800 women are suing the NHS and the manufacturers of vaginal mesh implants after suffering serious complications.

Some women reported that the implants – used to treat incontinence after childbirth or pelvic organ prolapse, where the womb or bladder bulge against the walls of the vagina – had cut into their vaginas. One woman said she was left in so much pain that she considered suicide. Others have been left unable to walk or have sex, according to the BBC.

The medical regulator has said that the best current evidence supports the continued use of mesh implants to resolve health conditions that could themselves cause serious distress to patients.

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What"s your experience of vaginal mesh implants?