Lois Rogers for the Daily Mail

Release time: 18:12 EST, November 1, 2021 | Update time: November 2, 2021 06:00 EST

What happened to us was indigenous, institutionalized female genital mutilation," said Mary Rodato, 63, from Kettering, Northamptonshire, a mother of three and a university researcher.

"This is a systemic failure in health and care, and it is completely avoidable."

What Mary is referring to is the complications caused by the implantation of surgical nets. The operation is designed to treat women’s postpartum pelvic injuries. When the material breaks down in their bodies and cuts into the tissues, this has caused thousands of people to be severely disabled, resulting in a series of destructive effects. Symptoms include pain, difficulty walking, and sexual dysfunction.

An eight-year "good health" campaign made the issue officially recognized, leading to the establishment of a government investigation under the leadership of Baroness Julia Cumberlege, the former Conservative Minister of Health.

What is happening to us is indigenous, institutionalized female genital mutilation," said Mary Lodato, 63, from Kettering, Northamptonshire, a mother of three and a university student. researcher.

Although the survey report was released in July 2020, some of its key recommendations have not yet been implemented, leaving thousands of women suffering and unable to obtain the help they need.

In April this year, seven NHS mesh removal specialist clinics are planned to open in London, Cambridge, Manchester, Newcastle, Nottingham, Sheffield and Leicester.

These will be equipped with a multidisciplinary team-including specialist surgeons, physicians, imaging specialists, nurses, pain specialists, physical therapists and clinical psychologists-to cover the management of all pelvic network complications.

But the women affected claimed that the shortage of experts meant that only two were in operation-University College Hospital in London and Southmead Hospital in Bristol (not on the original list).

They also said that it is extremely difficult to refer to one of these new centers, and even if they do, the waiting time can be as long as several years.

"For the doctor who treated us initially, these operations were no big deal-but for us, it was a catastrophic loss of work, family life and intimacy," Mary said.

What Mary is referring to is the complications caused by the implantation of surgical nets. The operation is designed to treat women's postpartum pelvic injuries. When the material breaks down in their bodies and cuts into the tissues, this has caused thousands of people to be severely disabled, resulting in a series of destructive effects. Symptoms include pain, difficulty walking, and sexual dysfunction

"Getting any help is a terrible battle. It is not only the medical profession but the government that is at fault. They did nothing."

Mary's story is familiar to the nearly 10,000 women who joined the anti-mesh organization called Sling the Mesh and many other support organizations.

After the birth of her son and two daughters (now 44, 41 and 35 years old), she developed mild urinary incontinence. In 2006, when she was 47 years old, Mary underwent surgery and inserted a net-like product called TVT (transvaginal tape), which is a type of plastic, different from the string bags used to pack oranges and other products.

TVT is designed to be sutured to the abdominal wall as a sling to support the bladder and relieve urinary incontinence. 

Although many women benefit, in thousands of cases, plastic is broken down in the patient's body. Baroness Cumberlege’s report found that the mesh was under-tested, its use was poorly regulated, and the surgeons who used it were often under-trained.

Mary said: "If I knew what this grid was, I would never own it, but the operation was sold to me as if it had nothing, and the success rate was 95% to 99%. It was fine at the beginning. , But about five years later, I fell into extreme pain.

"In April 2017, my daughter sent me an article about Grid from the Daily Mail and said,'Isn't this something you own?'.

"I suddenly understood, that's why I can't participate in anything with my family. I have five grandchildren, but I can't participate in it. I have been very tired, and there is a terrible tingling in the groin, so I can't walk. Already. To the point where I don't want to live anymore.

She added: “I have met many general practitioners and kept asking them if my question is related to TVT. They kept saying they were not.

In 2017, after reading this article, I insisted on seeing a gynecologist. At first he said it was not TVT. But when he checked me, he exclaimed: "Oh my God, I can feel it."

“My husband died of myeloma in 2017; he was only 52 years old,” said 55-year-old Sonia Browne, a senior bank executive from Romford in East London. There are four daughters. Her problem started in 2007, and when the grid was inserted, it gradually got worse. "I often lie in bed, very sick and very painful, so much so that my youngest daughter thought I would walk like her father

'But he said there was nothing he could do. This was beyond his expertise, so he introduced me to his superiors. But when I met the second gynecologist in December 2017, his attitude was,'Don't believe everything you see in the newspaper, what do you want me to do? '

'At that time I had read about the Sling the Mesh group and I wanted to be referred to a urologist who knows how to surgically remove the mesh when it is broken and embedded in the soft tissue.

"But my GP would not recommend me; we almost have a standing line. She said that the grid should stay in the body, no matter what it is doing, it won’t come out. It’s just such a battle. I’m often Fired and was told it was depression, and it was all in my mind.

In December 2017, Mary booked a private consultation with Sohier Elneil, a consultant urogynaecological surgeon at University College Hospital London (UCLH), who leads one of the only operating mesh clinics in the country, the London Integrated Mesh Centre.

"They are very sympathetic and supportive," Mary said. "They agreed to accept me as an NHS patient and said they would write to my GP. I was finally relieved that someone heard me. I went back to the GP and told her.

'Shortly after that, there was a BBC panorama program about the grid, and when I went back to see my GP, she apologized. She said that she had watched the documentary and understood.

'Since then, she has been very supportive. Finally I was on the right path. I still have a long way to go, including surgery, but this is the beginning.

Since then, thanks to the UCLH team, Mary has performed three complex operations to remove as many meshes as possible.

She is still in permanent pain, but can now walk for up to 40 minutes, which she thinks is a breakthrough. "I can tolerate this level of pain," she said. "I can't stand the pain before."

Many other patients told similar stories about how the UCLH team saved them.

“My husband died of myeloma in 2017; he was only 52 years old,” said 55-year-old Sonia Browne, a senior bank executive from Romford in East London. There are four daughters. Her problem started in 2007, and when the grid was inserted, it gradually got worse.

"I often lie in bed, very sick, and so painful that my youngest daughter thinks I will go down like her father.

"When I was checked at UCLH, someone asked me how I walked with the grid damaged so badly.

"Since I installed the grid, I have seen dozens of doctors. But this is the first time someone listens to me and understands." The only thing I can do is not to cry.

"I removed the mesh in July of this year. It has entered my nerves, vagina, tendons and muscles. They had to rebuild my vagina and I stayed in the operating room for four hours.

“I’m far from the previous state of Grid, but I’m 100% better than before. I have a three-year-old grandson, I can only accompany him to the park, and I can’t before the operation.

June Faircloth is another lucky person receiving treatment at UCLH. The 50-year-old mother of two children from Clarkton, Essex, and a former civil servant implanted the grid about 14 years ago

The London Integrated Network Center represents a personal victory for Ms. Elneil, who has learned many surgical skills to repair injuries to African teenage mothers after childbirth.

Since she saw her first patient being disabled by this material in 2007, she has been working hard to raise awareness of the grid problem.

"For a long time, I thought I saw all women being damaged by this material, so I had a wrong understanding of the severity of the problem," she said. 'In the end it became clear that this was not the case. By 2018, at UCLH, we will receive a large number of 30 or 40 patient referrals to us every month.

"Although UCLH itself has always supported me to become an outcast of some doctors because I have raised concerns about these materials, I am still, but if no one in the medical profession has said:'Women are telling the truth, they are suffering, and we need Support them, "It is much harder for them to get Cumberlege review and NHS England participation. "

June Faircloth is another lucky person receiving treatment at UCLH. The 50-year-old mother of two children and a former civil servant from Clarkton, Essex, implanted the grid about 14 years ago.

She is actually a patient representative of the NHS "Pelvic Floor Oversight Group" (PFOG), but learned from the Cumberlege report that although this started in August 2019, it actually continued the "previously established stakeholder group" Work" grid.

"They have been in this group for 12 years," June said. "It was given a different name, so it didn't seem to last long. In fact, they knew these problems had existed for many years.

"At a recent working group meeting, we were told that they knew in 2007 that one in ten patients with reticulum would have complications," she recalled.

"That's really high-if I knew it, I would never have it. We now know from research that about three or four out of ten people have problems. We think there have been at least 250,000 in total since the 1990s NHS surgery, so we are studying at least 25,000 women with complications.

At the same time, people continue to feel frustrated that Cumberlege's recommendations have not been implemented.

"The report says that the tragic and often heart-wrenching stories we hear from women suffering from mesh complications will leave a lasting impression on me and my team. This is true," Baron Camberley The lady told the "Health" magazine.

"Even though the review was completed more than a year ago, we still hear that women are in a desperate situation, suffering terrible pain, unable to work, not even able to take care of their children, and do not know where to seek help." This is simply a tragedy. . Even more so, because it can be avoided.

She added: “One of our nine main recommendations is to set up a dedicated mesh removal center by the NHS so that women can get the care and support they need. Not only surgical care, but also physical therapy and mental health support. , Pain management, etc. I was encouraged to see NHS England respond by planning to establish eight such centers.

A spokesperson for NHS England told Good Health: “All seven [sic] specialist centers are open, properly staffed and treated patients. The NHS has also introduced training and guidance for primary care teams to facilitate referrals and Help ensure people get the care they need.

However, Baroness Cumberlege believes that these centers are far from open: "I will meet with senior NHS England officials soon and will seek the latest developments. It is vital that these specialist centers are all open, fully functional and available. Used by women in need.

'They need to provide a consistently high standard of care for all eight people. We cannot have a grid removal center that lacks the correct expertise and understanding, or has insufficient resources or poor results. Women would never believe in these centers.

"It is also important that these centers not repeat past mistakes. They need to track the results of the resection, not only whether the resection itself was successful, but also the postoperative experience of each woman. The results and experience reported by the patient must be valid The cornerstone of measurement results.

'The operating surgeon also needs to agree on the safest and most effective way to remove the mesh. This can be complicated. I know that there is no consensus on how to best negotiate, for example, whether a complete resection or a partial resection is best for women, and what constitutes a complete resection.

"These aspects are confusing and worrying for women-the surgeons at these expert centers and the broader team have a responsibility to reach a consensus so that women have a clear understanding of what is involved."

Kath Sansom, 54, from Cambridgeshire, established Sling the Mesh after suffering a mesh-related injury and still experiencing chronic pain. Her group now has 9,100 members.

"Some of these women have suffered terrible, life-changing injuries at the hands of surgeons who are now identified as potential leaders of the reticulated center and should be experts in repairing them-but as far as we know, most People have not received additional expertise or training," she said.

"Last May, we were promised to meet with the NHS to discuss what women wanted from the mesh center, but this never happened.

"Our concern is that surgeons do not have the expertise in microsurgery to extract the tiny fragments of this plastic, which can cause nerve damage, chronic severe pain and infection.

"We still have a long way to go before we can properly help the thousands of women who have been hurt by these things."

For decades, people have been concerned about the weak regulatory approval mechanism for surgical instruments in the UK, including defective artificial hip joints and breast implants.

Following a recommendation in the Cumberlege report, the Drugs and Healthcare Products Regulatory Agency has just begun a ten-week public consultation to give people a say in establishing a new regulatory framework to improve the way equipment is evaluated before it is put into use. The market, and post-market surveillance to monitor emerging issues.

At present, the use of surgical mesh is "suspended", but it is still being promoted in other parts of the world. In addition to the difficulty of starting and running the grid removal center, the struggle of activists to prevent its use seems far from over.

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