The campaign is calling for: An operation, using mesh implants, with unacceptable risks, to be stopped. The implants are also known as tension free vaginal tape or mesh reinforcement.
And: The Government to tighten up legislation on passing medical devices for use in surgery.
Also: A National Register to track mesh problems.
Meanwhile: Life changing risks to be properly explained to patients before they consent as per Montgomery Ruling guidelines.
Women are calling for an operation with life-changing risks to be suspended across the UK.
The procedure was halted in Scotland in June 2014 but reinstated in March 2017 amid claims of a whitewash independent inquiry.
Local newspaper journalist, Kath Sansom, had the mesh implant operation on the NHS in 2015 which left her with searing leg and groin pain.
After three weeks of sleepless nights in agony, a Google search revealed she was not alone. Thousands globally are suffering. The latest country to introduce vaginal mesh implants is India. Angry at realising she was unwittingly involved in a massive women’s medical disaster, Kath set up Sling The Mesh campaign, officially launched 10 weeks after her operation.
The Facebook group now has more than 1,300 members although there are many other groups across the world – see bottom of page for details. The aim is to raise awareness of the risks of this 20 minute, day case operation. In the UK alone, the tape devices, made of mesh, to fix incontinence, have been given to more than 100,000 women in the last 10 years.
Mesh implants are used to fix incontinence or prolapse, often caused by natural childbirth. High impact training, which puts pressure on the pelvic floor, can also trigger problems. Incontinence is a common problem for high performing athletes. Some suffer from the distressing condition of incontinence or prolapse due to joint hypermobility syndrome, others for no apparent reason, from a young age.
Kath said:: “There are women in wheelchairs or walking with sticks because of this operation. Others with life-altering chronic pain, on cocktails of high dose medication. Many can no longer work, marriages have broken down and all for a 20 minute, day case operation that was supposed to improve their quality of life.
Lost sex lives
“At least half the women in my campaign have lost their sex lives where the mesh has either cut into or inflamed their sensitive tissue. It becomes too painful to try to have personal relationships. Women say they feel as if they have been sexually neutered.
“Overnight I went from a super fit mum of teenagers who did boxing training twice a week, high board diving, swimming, mountain biking and dancing at gigs, to a physical wreck who could just about walk my dog round the park.”
For the incontinence operation a surgeon implants a mesh tape sling.
It is known as a TVT or TVTO which stands for tension free vaginal tape.
It can also be called a transvaginal mesh (TVM) or a mid urethral sling (MUS). It is inserted blindly using a set of hooks known as trocars.
For pelvic organ prolapse, surgeons insert a patch of mesh with arm-like pieces to attach it inside a woman’s body. Again using hooks.
In both cases, vaginal mesh implants are the only type of surgery performed “blind”. Other operations are performed open where a surgeon can see what they are doing, or using key hole techniques and a camera to guide them.
Traditional surgical fixes for incontinence take up to four hours followed by three to four nights in hospital.
One is called the Burch colposuspension, which is like a hitch and stitch.
The other is an autologous sling, which uses muscle from the stomach wall to make a natural sling.
The incontinence mesh operations take 20 minutes as a day case procedure.The money-saving motivation of mesh is real.
Campaigning by Scottish mums Olive McIlroy and Elaine Holmes, along with journalist Marion Scott, led to former Scottish Health Minister Alex Neill calling for a suspension of mesh implants in June 2014.
However, after a three year review, a final report was released on March 27, 2017, which says the suspension is lifted because it claims the implants are safe to use under guidance.
The review’s chairman, a clinician and two patient reps resigned amid whitewash claims.
The Scottish Independent Review was published amid claims of a whitewash because a whole chapter on risks of this operation was omitted.
Plastic can shrink
No information was included on how the plastic polypropylene material can shrink, twist or degrade and leach toxins.
No mention was made of how prolapse mesh has been upgraded to a higher risk device in America nor a report included by the FDA – America’s health watchdog body – which says the trocars (hooks) to implant the mesh can cause injuries for up to 40% of women having prolapse mesh or 30% of women having mesh for incontinence. Read the report here.
No mention was made in the Scottish Independent Review that this is the ONLY surgery performed blind. The plastic mesh tape sling is inserted by guesswork, a bit like touch typing.
Clean contaminated field
There was no mention in the review that the plastic is inserted through the clean, contaminated, surgical field of the vagina. That means an area of good bacteria is invaded by a foreign body – a piece of plastic – where it can harbour bacteria causing lifelong urinary infections.
Lies, damn lies and statistics
The review does not explain the statistics used in a report published in the Lancet in 2016.
The report claims mesh is low risk BUT it uses Hospital Episode Statistics, known as HES data. If a woman presents with a mesh complication to her GP but does not go to hospital for it then she is not included in the HES data. Women given antibiotics for constant water infections or given high doses of pain killers but not referred to hospital, for example, will not be included in the HES.
That means the figures of risk will be VASTLY under reported. Read the flawed study here
Bigger disaster than thalidomide
The mesh has caused so many health problems in Australia that some of the products were de-registered there in November 2014.
The scandal in the 50s and 60s saw babies born with deformed limbs after women were prescribed Thalidomide as a morning sickness drug with devastating complications.
In the USA more than 100,000 lawsuits have been filed from women who have suffered permanent disabilities .
Leading American surgeon Tom Margolis felt so strongly about the TVT product that he wrote to Scottish Parliament urging them to ban the operation, saying the use of the mesh : “Must stop immediately. The complications from this defective surgical theory and defective material far outweigh the potential benefits.”Read the letter:
Orange netting as mesh implant
The TVT mesh is one of many medical devices, including metal on metal hip implants and the disastrous PIP breast implants that used mattress grade silicone, that campaigners say are too easily approved for use.
In January 2015, a team of undercover scientists took a piece of fruit netting, used to package oranges, to a regulatory body in Austria and were on the brink of getting a CE Kitemark approval for it, to prove how lax the system is.
Kath, whose girls are 14 and 20, decided to have a TVT mesh bladder sling after suffering what many mums are left with after childbirth – mild stress urinary incontinence. She was told it was a minimally invasive, relatively low risk, operation taking less than half an hour.
However, she has since found out what she thought was a body-friendly sling is made from polypropylene plastic mesh – the same material used to make drinks bottles .
She said: “The mesh is harsh with rough edges as sharp as a razor blade and feels more like the sort of material you would find on a building site not the type of thing to be put near the most delicate area in a woman’s body.”
Once inserted the mesh takes about four to six weeks to knit into the tissues.
After that it is like trying to get chewing gum out of matted hair.
Unlike other implants, that are relatively easy to be removed if there are problems, vaginal mesh is designed to be permanent. Surgeons can put it in but those same surgeons cannot take it out if a woman presents with complications.
Living a new normal
There are only a few surgeons in the world who can successfully remove it. Kath had her mesh sling removed by Natalia Price in Oxford in October 2015 and although quality of life has improved she is adjusting to a new normal.
She can no longer put impact on her legs. Even the shortest run, skip or jump will put her on pain medication for days. Before mesh she planned to cycle Snowdon’s gruelling Marin Trail. Now she can cycle for about 10 minutes on flat ground before leg pain kicks in.
“I was not told that I may suffer horrible leg and pelvic pains or that I would feel like I was being cut by cheese wire inside my body.
“I was not told that this was a permanent device. Some women are on pain killers for life, suffer bloating from the inflammation and go on to develop auto immune diseases like fibromyalgia.
“There are online support forums across the globe with tales of women suffering and crying out for help. When it goes wrong it goes spectacularly wrong and it is not a risk worth taking.
“Few surgeons give women fully informed consent; risks are not properly explained,” she said. “In the world of mesh removals I’ve had a good recovery compared to many others, but even my health has been compromised. None of us ever go back to what we were.”
Human guinea pigs
Woman are the human guinea pigs for a product that was launched on the market in 1996 having only been tested in a few dogs, sheep and rabbits, who cannot speak of crippling pain or lost sex lives.
Those who support mesh say it is one of the most studied operations in the world.
However, most of those studies are either short term or are run by biased medics, who have previously or still have financial interests within the medical device industry.
Alternatively, they use flawed statistics such as Hospital Episode Statistics (HES).
The HES only record if a woman has been treated for her complications in hospital and does not take into account women suffering pain going back and forth to their GP.
Bias in medical studies unravelled itself in the 2015 Cochrane Review into mesh which looked at 81 different reports.
Out of those 81 , only two were at a low risk of bias. A total of 13 were high risk and the other 66 were unclear.
Jeremy Vine Show
Sling The Mesh featured on The Jeremy Vine Show on BBC Radio 2 for the lunchtime medical slot which was guest hosted by BBC media editor, Amol Rajan, and GP Sarah Jarvis. Monday January 23, 2017 at 1pm. Listen here
When the campaign launched in 2015 it was featured on Sky News with reporter Charlotte Lomas-Farley.
MESH PROBLEMS ARE GLOBAL
AMERICA Dr Raz explains why he will not use mesh implants.
AUSTRALIA Senator Derryn Hinch backs campaigners who are calling for the surgery to stop.
BELGIUM Women have joined forces to fight mesh implants
CANADA Campaigners are desperate for their voices to be head amid a backdrop of legal cases suing for being maimed.
FINLAND Women in a Facebook support group.
ISRAEL The legal cases are ongoing in Israel.
NEW ZEALAND Just one of many women suffering after a mesh implant.
NORTHERN IRELAND Women are fighting to be transferred to England for mesh removal with a specialist who can remove mesh implants if they have complications because nobody in Ireland can do it. So far nobody is listening. to them.
SCOTLAND The eyes of the world are on Scotland where politically they are leading the way by being the first to take the fight to Parliament. An independent review reinstated mesh implants in March 2017 amid claims of a whitewash. Campaigners are now looking into launching a legal challenge.
TO FIND ALL THE GLOBAL MESH SUPPORT GROUPS FOLLOW THIS LINK TO THE PINNED POST ON SLING THE MESH ON FACEBOOK