Thousands suffer in silence

  • Mesh Report does not look into mesh safety.
  • At least one in 11 women have complications.
  • Hundreds more suffer in silence as six in ten surgeons don’t log problems.
  • Women who go to doctors or outpatients are not logged in mesh risk statistics.
  • More than 126,000 mesh tape implants used in England alone in last decade.
  • More than 4,800 mesh tape implants have been removed and 1,200 adverse events logged in England in the past decade but because of under-reporting, the real figure will be much higher.
  • Pelvic mesh been used in NHS for 20 years.
  • Patient reps and leading mesh removal surgeon not invited to mesh report meetings for 18 months.

Women are outraged after realising the NHS never intended to investigate mesh implant safety despite undertaking a three-year mesh review costing thousands of pounds.

A long-awaited report was never given funding to look at the mesh product itself. The review began in 2014 and involved experts and patient representatives. It only commissioned to look at patient leaflets, under-reporting and how to deal with women who suffer mesh complications.

Labour MP Owen Smith, who has set up an All Party Parliamentary Group into mesh, said: “Mesh-injured women will be deeply disappointed by the outcomes of the final NHS England review, which seems to have made little progress since its interim report came out over a year ago.

“This was an opportunity for the NHS to take a lead and recommend a pause in the use of mesh until we know precisely how many women have been adversely affected by the product. Instead, they appear content to allow mesh to be widely used despite growing, international concerns about its potential ill effects.

“The only people pleased with this report will be the medical device companies who marketed mesh so diligently and who now fear mass litigation. Many companies have already taken their mesh products off the market, that alone should tell us something is not right with these devices.”

Surgeon Wael Agur said: “If we cannot obtain accurate figures on the true risks in real life, we cannot continue offering these procedures in the future. The UK mesh group did not plan to comment on safety of mesh procedures in comparison to the alternatives. Recording these procedures on a national database and reporting adverse events to watchdogs must be made mandatory.”

Kath Sansom, of campaign group Sling The Mesh, said: “They might as well park an ambulance at the bottom of a cliff and wait for women to fall in. They should have looked at product safety, not at ways to fix women once things have gone wrong.

“How can a major study of mesh not look at mesh safety. It is a whitewash. The NHS paid lip service to patient reps. Mesh implants are the only operation done blind, using large hooks to put in plastic that can then shrink, twist or degrade inside the body. But nobody has explored that.

“We want a full investigation and audit into how many women are suffering from mesh implants. While that takes place, we want a mesh suspension. We want a national register and NICE to urgently bring its SUI guidelines forward from 2019.”

Life-changing pain

David Golten, partner and head of litigation at City law firm Wedlake Bell, leading the group legal action for Sling The Mesh, said: “The suffering of women affected by surgical mesh implants is immense. They live not only with life-changing pain, but they also have to accept they will never again be the people they once were. The emotional impact of that for them and their families is appalling, and all for an operation that was supposed to improve their quality of life.

“We are putting together a team of leading legal experts from around the globe to represent these women to make sure they receive the redress they deserve.”

Surgeon Suzy Elneil, of UCLH, said: “The complexity of mesh surgery, no matter where it is placed, is not in the putting it in-situ, but in the preparation of the patient. This includes taking a proper history, investigating appropriately, instituting non-invasive measures such as physiotherapy, and offering the patient options of all available therapies. All of this requires informed consent, including the pros and cons of every procedure being discussed at length.

“In addition, should complications arise, there should be a defined pathway of care. But, above all the patient must be listened to and supported by us in the profession. To do otherwise would be harmful at all levels.”

Retired surgeon John Osborne said: “Undoubtedly many women have been helped by the TVT operation, but the complication rate seems to have been under-reported. My feeling is too many women have had this procedure as a quick fix when the symptoms did not justify the risk.”

Jemima Williams of Welsh Mesh Survivors said: “Wales has been ignored for years. This is the tip of a huge global iceberg that needs to be addressed now. Mesh should be suspended until an investigation is made into the adverse effects. No other life should be destroyed.”

Jackie Harvey of Northern Irish mesh support group, said: “Over 200 mesh-injured women in Northern Ireland have joined the local support group within the past four weeks. Heartbreaking stories of going to seek help with pain and infection only for many of them to be fobbed off or told they are the only one. The realisation is now dawning that they are unlikely to get the treatment they need in Northern Ireland, so are increasingly turning to England and choosing to pay for private treatment by mesh complication experts there.”

Scottish Mesh Survivors said: “Patients should not have had to campaign for years to highlight the suffering mesh implants have caused and to get basic safety measures in place. It is no longer acceptable for surgeons to assume that if a device has made it onto an NHS shelf it is safe.

“We have been let down badly by pro-mesh health professionals who cannot fix us when serious complications occur, and we have been let down by the MHRA who regurgitates the claim that the ‘benefit [of mesh] outweighs the risk’ without having necessary data to back up this up.

“We need the Government to step up to the mark and take responsibility for what is arguably the biggest health scandal ever and stop these procedures now!”

Resignations

Four of seven patient reps resigned from the NHS review as they claimed they were not listened to and were not invited to meetings for the past 18 months.
Teresa Hughes said: “This final report was made without patient members being on the oversight group and having no input. We were treated disgustingly, no communication for months.”
 
Jill Lott, patient rep who resigned, said: “We were nothing but a pawn to allow them to say patients were part of the process.”
 
Ann Boni said: “Patients were invited to these meetings as a box-ticking, lip service exercise on behalf of NHS England and the Department of Health. We have been treated as little more than an annoyance. They failed to listen to us.”
 
Ingrid Hardacre said: “While I welcome the much-needed addition of giving GPs more information, including 18 mesh specialists centres, this report has changed nothing, as it is till pro-mesh. Patients will continued to be harmed by dangerous, blind mesh procedures.”

‘Key areas of action’

A spokesman for NHS England said the interim report “recognised three key areas of action and made recommendations on what should be done to tackle them”.

It said: “These focused on improving clinical quality and practice to achieve good outcomes consistently, better data and information, and informed consent. It has not been NHS England’s role to set the direction of the work: the expertise and experience in this field lie with the clinicians and patients.

“The working group’s role has been to identify issues causing concern in the treatment of SUI and POP, particularly surrounding use of mesh devices, and make recommendations to the health system to address them.”

For the mesh report, the NHS commissioned and provided funds to look at:

  • Encouraging surgeons to report problems. Six in 10 don’t.
  • New patient information leaflets.
  • How to deal with women suffering. Within that 16 hospitals in England and Scotland have become specialist mesh problem centres. There are none in Wales or Northern Ireland. Surgeons at some centres have no comprehensive mesh removal experience and many are known to have told women they are mystery mesh patients.

The NHS relies on NICE guidelines into mesh. However, the last major review of incontinence mesh was 2013. It was revised in 2015. The next major review is 2019. For prolapse mesh, a study, called PROSPECT, shows there are no benefits to using mesh and carries risk for at least one in ten women.

Watchdog body the MHRA said the mesh causes serious complications for a minority of women, but it remains an effective treatment option. It said the benefits of vaginal mesh implants outweigh the risks.

Some of the English group patient reps resigned due to not being listened to. They were made oversight members 18 months ago and have not been invited to any meetings in that time.

The Guardian reported the MHRA tried to limit media attention on mesh.

Westminster meeting

Members of Sling the Mesh held a packed meeting with Mr Smith on July 18 in Parliament where women and their families wept as they gave harrowing accounts of traumatic complications suffered from mesh implants.

At the meeting Carl Heneghan, professor of evidence-based medicine at Oxford University, said mesh was like the thalidomide scandal – except with that you could see the injuries. With mesh, problems are hidden.

Politicians in Scotland called for a suspension of mesh use in 2014; however the material is still widely used in England, Wales and Northern Ireland.

Alison Wright from Brighton, East Sussex

Mum of two Alison Wright,  52,  is on strong painkillers and sleeps for up to 14 hours a day as it is the only way she gets any real relief.from the constant pain she suffers after having a polypropylene mesh sling implant.

Alison Wright.
Alison Wright.

“I wish I had been asked some basic questions before having the operation in the first place,” she said.

“My body’s strong foreign body response might have been predicted if I had been asked more questions about allergies.

“I have allergies to synthetic clothes. I am allergic to hair dye, nickel, plasters and have sensitive skin.

“Surely that would be a sign that I might have a reaction to the plastic mesh. I think there should be more studies carried out on women like myself to find out more about the side effects – a lot more research is needed I believe.

Warning women

“Polypropylene is known to go brittle in bodies over time so it shouldn’t be used. If I can stop another woman going through what I have suffered in the past five years – then this has got to be worth it,” said Alison.

Alison had a ‘simple’ procedure to cure a common but embarrassing women’s problem when she  had a TVTO operation to fix stress incontinence, after being told by her surgeon that it was the latest and best way to solve the problem. That was in 2012.

Alison, who has two grown up children, damaged her pelvis in a fluke accident which saw her drop through a floor in 2008, damaging her pelvic floor and hip, when she fell astride the iron grate that had dislodged as she walked over it.

Four years later she was becoming more and more incontinent and felt something needed to be done.

The pain she suffered at the time of the accident is comparable to the pain she now suffers on a daily basis since having the operation, which included sutures to support her prolapsed uterus and a TVTO mesh implant to lift her urethra.

“The pain after the operation was terrible, it was mostly in my left buttock where the surgeon had attached my uterus to a ligament attached to my sacrum, with sutures.

Intense pain

On a positive side my continence was good, but I was in constant intense pain and I had a constant discharge, but no infection,” said Alison.

Two years later, after going backwards and forwards to consultants, her surgeon agreed to remove sutures.

“I couldn’t believe it when I saw what had been taken out of my body it was about 10cm long – not what you expect when you hear the word sutures or stitches,” said Alison.

Unfortunately that did not solve the problem as one suture was left in and Alison had a further operation in 2015 to remove that.

“Basically my body was rejecting these foreign bodies that had been put inside me. When the final suture was removed it felt wonderful, there was no longer any pain in my buttock.

Sex life lost

But unfortunately the tape used in the TVTO operation started to cut through and Alison could feel it just under her urethra.

“The tape’s sharp edges made having sex impossible,” she said.

“My GP referred me to another consultant in Eastbourne. Initially, he couldn’t feel anything, until I pointed him in the right direction – then he couldn’t believe he had missed it.

“He booked me in straight away to remove the middle section of the TVTO in October last year, and it has been both brilliant and terrible.

“I am still continent – even when I sneeze – but I now have a lot of pain deep in my right groin.

“I am hoping it is a fragment remaining in the vaginal section that is causing this new pain, as this can be corrected.

“Removing the last bits of tape from each side of my groin has high risks, so I want to be sure it is essential before I go ahead with that. They want to me to go to Cambridge for that tricky operation.”

 

 

Lisa Woodrow from Thetford, Norfolk

“I joked that this operation would make me feel like a new woman. It has. It left me in a wheelchair for 18 months where I couldn’t walk.

Lisa Woodrow with her son.
Lisa Woodrow with her son.

“Now I’ve had the mesh removed my legs shake badly and I need a stick to support me,” said 53 year old Lisa.

“I’ve gone from loving dancing, doing karate, swimming, long walks to a shell of the woman I once was.

“I had to give up my successful business supplying hotels with accessories, sell my house and now live in rented accommodation on benefits. I’m registered disabled.

“I have gone from being an outward, social, high flying professional, in a relationship to a broken woman.

“I’ve had to learn to walk again with a heel-toe step. The pain is so bad I’m on the highest dose of daily pain relieving drugs, I’m a legal drug addict.

“That’s the new woman I am and the MHRA still say the benefits outweigh the risks.”

Lisa had TVT mesh inserted in November 2012 to fix a problem of uterus prolapse and mild incontinence after ventouse childbirth to her two sons, now 30 and 32. Immediately after the operation, she said it felt like she had been stitched up too tightly on the left side.

“I found it difficult to empty my bowel, had recurrent water infections and for several months found sitting without cushions difficult, as it was like it was pulling underneath,” she said.

Lost relationship

“I also found intercourse with my then partner difficult. We have since split because of all the complications I have had with mesh.

“When I went for my three month checkup I was seen by a nurse, not my consultant and told the operation was a success, even though I complained of so many problems.

“I was told the pain was scar tissue and that it could take a long time to heal and for sex use a cream from the doctor.

“I started to get spasms in my legs, and saw a neurologist as they wanted to rule out MS. I was given the all clear. But still got spasms, then started to get a pain radiating through by hip/groin area.

By the time it got to May 2015 things got worse.

Lost use of legs

Lisa Woodrow in her wheelchair.
Lisa Woodrow in her wheelchair.

“I woke after a restless night with pain but when I went to get out of bed, I couldn’t stand.

“After six weeks in hospital doctors told me it was a slipped disk (an MRI proved this incorrect) or that my lower spine may have narrowed (again proved incorrect), I was put on vast amounts of drugs.

“When I tried to walk my legs shook. I begged my doctors to refer me to a gynaecologist that specialised in mesh, but this proved difficult.

“In February 2016 I saw removal specialist Ms Elneil in London.

“After an internal it was explained my mesh had eroded through my vagina.

“When it was removed it was found the mesh had been incorrectly inserted.

“Since having it removed, my legs feel like they have been freed and I can now sit comfortably, but the nerve pain can keep me in bed for days.

Need walking stick for support

“I feel a lot better but am only able to walk short distances with a stick. Anything too far and I need to take my wheelchair out

“I am now waiting for further surgery to remove further mesh from behind my pubic bone, and then have a colposuspension – the traditional surgical fix – as I am now fully incontinent.

“Training of GPs and hospital doctors and nurses in mesh complication awareness is a MUST.

“My dad saw Kath Sansom of Sling The Mesh talking on the television and shouted look! That’s your story!

Lisa Woodrow - the party girl before a mesh operation ruined her life
Lisa Woodrow – the party girl before a mesh operation ruined her life.

“If it hadn’t been for that and me then finding the support of the women on the Facebook group, I don’t believe I would ever have got the operation that I so needed.

“Because of how I was treated by my GP, in particular, I almost started to believe the pain may indeed, be in my head.

“I was a fun loving party girl before a TVT mesh implant robbed me of the life I once knew.”

Jackie Dee from Banbridge, Northern Ireland

Within two months of getting a mesh implant, Jackie developed psoriasis on her scalp, ears and nails which she had to bathe daily in prescription steroid ointment – 12 years later, within a week of having the mesh removed by a specialist surgeon in Oxford,, the psoriasis cleared.

Jackie Dee.
Jackie Dee.

“Gradually the pain in my legs and groin intensified, my thighs felt like somebody had pulled and punched them. I used to go to spinning classes but had to stop as not only were my legs sore but I couldn’t sit on a bike saddle, I then couldn’t sit comfortably on a chair.

Jackie said: “At the time I never made the connection that the mesh could be making me sick but slowly my health began to go downhill.

“We are ticking time bombs for massive health issues. The mesh can be fine for years and then, as if from nowhere, cause huge health problems.

“X-rays showed nothing was wrong, but I began getting stiff. It became difficult to bend down to put on my shoes, I could no longer kneel.

“Then it progressed so I could no longer run. By 2012 everything got really painful, calf muscles hurt constantly and my feet were like intense toothache. I was sent to a rheumatologist, then a podiatrist who made me special insoles that cost a fortune. They made no difference.

“The pain was dreadful, by this stage I knew something was seriously wrong

“Having a mesh operation was the worst decision of my life. Suffering leaks after babies is one of those health problems you don’t really talk about with friends and family and certainly never at work,” said Jackie, a mother of two teenage sons.

“Like so many mums after childbirth, I would sneeze or laugh and get leaks, but it gradually got worse,” she said.

‘I trusted him completely’

However, her decision to have the operation to fix it was to turn life on its head. It is called a simple fix to an embarrassing women’s problem – incontinence or prolapse – often suffered after childbirth.

It is experienced at some stage of 1 in 3 women’s lives and the problem is on the rise among younger women who haven’t had babies due to an increase in popularity of high-impact exercise classes and long-distance running that put intense pressure on the pelvic floor.

Jackie said: “I went on a firm’s team building day and while we were kayaking had a leaking accident. That made my mind up to go and see my obstetrician, the man who delivered my babies.

“When he offered this quick fix for busy working mums like me, I jumped at it, I trusted him completely.

Quick fix for busy working mums

“It sounded so much better than weeks or months of physiotherapy and better than the old fashioned traditional surgery fix that had a much longer recovery time.

“I was not told of any long term risk, just that this was the gold standard treatment, so I had it done.”

“Then I stumbled on a national newspaper article about Sling The Mesh campaign in England and I made the connection. A woman the same age as me suffering all the same pain as me from a TVT mesh, I couldn’t believe it.

“Years of my life were miserable and my family thought I was being dramatic, finally I realised I was not alone. I was angry. Nobody warned me of these risks.”

Facebook support

Jackie, who was diagnosed with fibromyalgia in 2016 – a common health issue subsequently suffered by mesh implanted women – ended up setting up her own Facebook support group called Northern Irish TVT, TVTO, Hernia and Prolapse Mesh Victims – the same surgical mesh material is used for hernia repairs and can cause problems of pain and erosion.

She said: “Some days I feel so powerless, women are coming to my Facebook support page in chronic pain looking for help yet I know their consultant will not refer them to England for mesh removal else it will open the floodgates to many more women.

“There are no removal experts surgeons in Northern Ireland to help these poor women. This operation needs stopping  before hundreds more are maimed.

“Women should be given physiotherapy or traditional surgery fixes, not implanted with plastic mesh – it is Russian Roulette if you suffer.

““There are studies that show the plastic mesh is not inert. It can change inside your body. it can shrink, twist or degrade.. Imagine that inside the most delicate area of your body. No wonder women are in so much pain.”

  • Women from Northern Ireland cannot routinely be referred via NHS for specialist treatment in other parts of UK. It can only be done after they have been to see a consultant and only then on their request can they put a patient’s case to a Multi Disciplinary Team for a decision via Extra Contractual Referral System. In other words – it is very difficult, Jackie said.

Belinda Bibby from Kelsall, Chester

Belinda Bibby is one of thousands of women who find after giving birth that their pelvic floor is weakened – and after five children it is hardly surprising.

Belinda Bibby.
Bellinda Bibby.

She was told the TVT mesh tape sling would revolutionise her life so she could exercise and go about her daily life without any worries.

So in 2005 she went for it. As a busy working mum running her own business she said it was great for the first six months.

However, her decision to have a TVT mesh operation was to be the worst decision of her life.

She said the pain and complications were so bad that: “I felt like cracking up at times. The medical profession need to know the seriousness of adverse side effects, GPs and nurses in doctor’s surgeries need to know how bad this operation can be.

”Around 1 in 3 women’ suffer leaks at some point  and the problem is on the rise among younger women who haven’t had babies, due to the popularity of high impact exercise classes and long distance running that put intense pressure on the pelvic floor.

The operation fits a mesh sling to support weakened muscles. More than 100,000 women have had it done on the NHS in the last decade.

Belinda said: “The mesh sling fixed the leaks and life was good, however, my health slowly began going downhill.

“After six months the sling failed and then I started suffering horrendous auto immune reactions.

“I had fatigue, severe unexplained headaches, swelling and stiffness in my hands.

Liver readings dangerously high

“My liver readings became so dangerously high from the severe sensitivity reaction to the mesh that I was unable to take even paracetamol or antibiotics for the pains, infections and inflammation within my body.

“For the last year of having the sling inside me I had to have my liver checked every two weeks.”

Belinda explained: “I suffered with oedema, spots, boils and abscesses that would come up all over my body and leak pus, and I had a strange purple rash on my face and up to five asthma attacks a day at its worst.

Things got so bad she found a specialist, one of only a handful in the UK, who can safely remove the plastic mesh sling and in January 2015 she had it taken out.

“I had severe stomach inflammation and I lost the hearing in my right ear as well as experiencing a clicky jaw for no apparent reason.

“After mesh was removed my health completely returned to normal. There are ‘no words’ to describe how good it feels.

“I can walk without my body aching, be it my joints or muscles, from head to my feet. I suffered for nine years.

“I’m living proof that women can get auto immune reactions to the TVT sling which is made of polypropylene.”

She has since had two traditional surgery fixes in a bid to fix her incontinence – the latest one has worked although she is now suffering infections.

Plastic sling regret

But she said: “At least with traditional surgery there are no side effects of plastic mesh.

“I wish I had been given proper guidance from my surgeon so that I had the traditional surgical fix in the first place.

“I endured years of not getting any help with all my symptoms, because no one knows of the adverse effects of the TVT,” she said. “I had to do all my own research on the internet.

Stiffness in my feet upon getting out of bed first thing in the morning about 6 months after insertion of the TVT, (inflammatory arthritis in my feet) since gone, also the stress incontinence slowly returning too about 6 months later besides stiffness in my hands, fybromyalgia brain fog, urgency to go the toilet unable to sit down to pee, more and more frequently getting unexplained UTIs.

I was told it’s all in my head,  or was told I was getting older or you’re on the change. Then I found information from a site on the internet, then joined a forum to get help to find a doctor to help remove the TVT mesh tape.

“Once inserted it’s designed never to come back out and is like trying to get chewing gum out of matted hair.”

Karen Murrell from Rainham, Essex

Karen Murrell.

Karen, a school welfare officer, said: “Within a month of this operation it felt like Id got a set of teeth inside me, the sharp pain was unbearable.

Karen Murrell.
Karen Murrell.

“I was so fit, always in different exercise groups, weightlifting, step classes, yoga, I did the moonwalk for charity. Now it’s painful to walk more than a few hundred yards. I can’t walk fast, never mind run.

Fifty-year-old Karen, who has a 21-year-old daughter and a 14-year-old son, said her life was turned on its head because of a 20-minute day case operation, a “simple” fix to an embarrassing women’s problem – incontinence or prolapse – often suffered after childbirth.

Around 1 in 3 women get it at some point in their lives and the problem is on the rise among younger women due to the popularity of high-impact exercise classes and long-distance running that put intense pressure on the pelvic floor.

The operation fits a mesh sling to support weakened muscles and 13,000 women get it done on the NHS every year.

“After my second son I started wetting a bit, like a lot of mums I got on with it and ignored it but gradually it got worse,” Karen said.

“I went to my GP and was referred to hospital where they offered this operation, they said it might not work, or might damage my bladder, I may want to go to the toilet more. They said the word erosion but I had no idea what it meant and didn’t query it as the surgeon didn’t seem concerned.

“They said the worst that could happen is it wouldn’t work.

“I had no idea this operation was done blind – it is the only operation where a surgeon uses guesswork.

“I had no idea they were putting in a piece of plastic mesh and no idea it was permanent. I thought it was some kind of body friendly material or could be taken out if I didn’t get on with it.”

Permanent implant

So in 2009, Karen signed up for the TVT mesh sling but within months the plastic had cut through her vaginal walls .

“That that is what they mean by erosion. A piece of it was trimmed away but the pain never went away and a few years later it cut through again and now it is difficult to go to the toilet.

“Over the years my legs hurt to exercise, so I stopped exercising.

“I was a self employed hairdresser but switched to being a healthcare assistant at a hospital, but I couldn’t do the shifts as it hurt my legs too much, so yet again switched jobs to a school welfare officer.

“It feels like somebody has put concrete in my shoes, my calves and thighs are like somebody has punched them and my legs have heavy toothache. It is liked somebody ripped my life away from me.

“I blamed hormones, age, I never thought about the mesh, until I found a support group called Sling The Mesh and found loads of other women suffering the same things as me.

“My GP knew nothing about mesh problems but referred me straight away to a removal specialist called Suzy Elneil in London. I’m due to have it removed on April 12.

“I’m angry about what’s happened to me .  I just want to try to get my life back.”

Kate Langley from Pevensey Bay, Eastbourne

“Before the mesh sling, I was a happy, healthy mum of two children. I had my own business as a registered childminder, but I had to give it up as I’d collapse in agony and became unreliable.

Kate Langley.
Kate Langley.

“I tried to work in a preschool, but I had to give that up too. If I do too much, it triggers the pain attacks, so I’m now at home.

“I’ve lost all my confidence, I suffer from anxiety and I’m covered in psoriasis, probably due to the stress of it all.

“We have got into debt relying on my husband’s salary to support us. I can’t walk far because of the pain, so I’ve put on a lot of weight too, which makes me miserable.

“I always try to appear happy and positive to others, but inside I spend my time in fear at the thought of my children not having a mum any more.

“I have virtually no sex life either, due to pain caused by all the surgery. I’m lucky to have such a kind husband who supports me.

“I want to warn all new mums to please try natural solutions before going under the knife for what is called the ‘gold standard’ fix for incontinence.

“How I wish I had steered well clear of surgery and instead concentrated on my pelvic floor exercises after my children Josh,  14, and Jessica,  8, were born, like French women do.

New mums in France

“In France, 20 sessions of gynaecology physiotherapy are offered to all mums after they give birth.

“In it they learn to do their Kegel exercises properly, so the problem is stopped before it gets out of hand. In tailored sessions, a tiny probe is inserted, and women squeeze as characters pop up on a computer screen – a bit like Pac-Man for your privates!

“But in England we mums are not so lucky, and the Kegel exercise advice is largely ignored, as it is not something that is widely discussed at the new mum stage.

“I was told this surgical fix would be the answer to my leaks, so in 2012 I had what is called a TVTO mesh bladder sling inserted.

“From the start I had severe abdominal pain. Doctors put it down to endometriosis, but really the pain baffled them, and a few months later they removed my gallbladder as they thought it was gallstones.

“It was like childbirth contractions with shooting pelvic pain. The agony coursed through my body, so in 2014 I had a hysterectomy.

“It didn’t fix it. I confused the medics. Some days I would collapse on the floor. I felt like my inside was being ripped in half. I’ve had more than 50 hospital admissions now, many of them in an ambulance and needing Entonox, morphine or ketamine.

Mesh cut through my vagina

“Nobody knew what was happening to me until I went to a different hospital, where a doctor discovered the plastic mesh, with edges as sharp as a razor blade, had eroded through my vagina.

“So in I went again for another operation to remove a tiny bit of mesh that had protruded through. A week later, however, the trips to A&E began again as pain consumed me.

“Finally doctors realised that the mesh tape sling was sitting in the wrong position and I needed to find a specialist.

“There are only a handful of surgeons in the world who can remove mesh slings when things go wrong, and I was lucky enough to be referred to Suzi Elneil in London, who said the mesh sling was pinching a major nerve called the obturator.

“It was also sitting in the wrong position inside me. By now I was in agony when I urinated. Every so often my leg would go weak and I had a limp.

“My family clubbed together to pay for the surgery privately to remove the sling. Pieces of the plastic had eroded into my urethra, bladder and obturator nerve. It was such a mess that the surgeon had to reconstruct my urethra.

By now I needed daily doses of strong nerve-blocking drugs. Thankfully I found an online Facebook support group called Sling The Mesh, where I connected with other women, also suffering mesh problems, who understood the agonising pain of when this operation goes wrong.

“Last year I had another operation to take out my ovaries and have a procedure called a Burch Colposuspension (like a hitch and stitch), which is the traditional surgical method of fixing incontinence.

Mesh is now close to main artery

“However, in the following weeks, a scan showed that there was still a piece of mesh under my pelvic arch in an extremely difficult-to-operate-on position.

“It is close to a main artery, so leaving it in could pose a real risk. It also means I will continue to get infections and pain. If I choose to go ahead it will be life-risking surgery.

“I’m terrified about having this final piece of mesh taken out, but I’m also terrified of leaving it in.

 

“To all new mums I say please don’t fix those embarrassing moments with mesh sling surgery. I wish to God I could press a rewind button so I could stop myself making the worst mistake of my life.”

 

Kate writes for Juno magazine:

The dangers of a day case operation to fix incontinence
By Kate Langley
 
The wait is over, you got through childbirth and as you gaze adoringly at your baby sleeping in their cot, coping on minimum sleep,  the last thing on your mind is wetting yourself.
But for one in three women the pressure put on pelvic floor muscles by pregnancy and childbirth can be a recipe for oops moments when you sneeze, laugh or jump on the trampoline with the children.
As weeks, months and years pass many women manage to restore their pelvic floor  but for a third of mums the problem slowly gets worse until before you know it you are a  Tena lady
We laugh it off – squeeze before you sneeze  – but for some, like me, you decide to fix it.
However, I want to warn all new mums – please choose natural solutions before going under the knife for what is called the gold standard  fix for incontinence.
The surgery is a 20 minute day case procedure. Surgeons insert a mesh bladder sling to shore everything up . It is given to 13,000 women a year in the UK on the NHS – but the risks are not explained properly to patients.
How I wish I had steered well clear of surgery and instead concentrated on my Kegel exercises after my lovely children (Josh, 14, and Jessica, 8) were born, like French women do..
In France sessions of gynaecology physiotherapy are offered as standard to all mums after giving birth. In it they learn to do their Kegel exercises properly so the problem is stopped before it gets out of hand. In tailored sessions a tiny probe is inserted and women squeeze as characters pop up on a computer screen – a bit like Pacman for your privates!
But in England us mums are not so lucky and the Kegel exercise advice is largely ignored as it is not something that is widely discussed at the new mum stage.
 I was told this surgical fix would be the answer to my life’s leaks prayers and  in 2012 I had what is called a TVTO mesh bladder sling inserted.
From the start I had severe abdominal pain. Doctors put it down to endometriosis but really the pain baffled them and a few months later they removed my gallbladder as they thought the agonising pain was gallstones –it was like childbirth contractions with shooting pelvic pain.
But still the pain coursed through my body, so in 2014 I was given a hysterectomy.
The pain raged on.  I had confused the medics  Some days I would collapse on the floor. It felt like my insides were being ripped in half.
 I’ve had nearly 50 hospital admissions now, many of them  in an ambulance needing entonox, morphine or ketamine.
 Nobody knew what was happening to me until I went to a different hospital where a doctor discovered the plastic mesh, with edges as sharp as a razor blade, had eroded through my vagina.
So in I went again for another operation to remove a tiny bit of mesh that had protruded through.
A week later, however,  the trips to A&E began again as pain consumed me.
Finally doctors realised the mesh tape sling was sitting in the wrong position and  I needed to find a specialist.
There are only a handful of surgeons in the world who can remove mesh slings when things go wrong and I was lucky enough to be referred to Suzi Elneil in London who said the mesh sling was pinching a major nerve called the obturator . It was also sitting in the wrong position inside me.
By now I was in agony when I urinated. Every so often my leg would  go weak and I had a limp.
My family clubbed together to pay for the surgery privately to remove the sling. Pieces of the plastic had eroded into my urethra, bladder and obturator nerve.
It was such a mess the surgeon had to reconstruct my urethra.
By now I needed daily doses of strong nerve blocking drugs. Thankfully I found an online Facebook support group called Sling the Mesh where I connected with other women, also suffering mesh problems, who understood the agonising pain of when this operation goes wrong.
Last year I had another operation to take out my ovaries and have a fix called a Burch Colposuspension– like a hitch and stitch – the traditional surgical method of fixing incontinence.
However, in the following weeks, as the pain continued, a scan showed there was still a piece of mesh under my pelvic arch in an extremely difficult to operate on position. It is close to a main artery so leaving it in could pose a real risk. It also means I will continue to get infections and pain.  If I choose to go ahead it will be life risking surgery.
I’m terrified about having this final piece of mesh taken out but I’m also terrified of leaving it in.
Before the mesh sling I was a happy healthy mum of two children.
I had my own business as a registered childminder but have had to give up as  I’d collapse in agony and became unreliable.
I tried to work in a preschool but had to give that up too.
If I do too much it triggers the pain attacks so I’m now at home.
 I’ve lost all my confidence, I suffer from anxiety and I’m covered in psoriasis, probably due to the stress of it all.
I can’t work so we have got into debt relying on my husband’s salary to support us.
 I can’t walk far because of the pain so I’ve put on a lot of weight too which  makes me miserable.
 I always try to appear happy and positive to others but inside I spend my time in fear of the thought of my children not having a mum anymore.
 I have virtually no sex life either due to pain caused by all the surgery. I’m lucky to have such a kind husband who supports me.
So to all new mums I would say please don’t fix those embarrassing moments with mesh sling surgery.
I wish to God I could press a rewind button so I could stop myself making the worst mistake of my life.
As you gaze adoringly at your gorgeous new baby, please remember to do your Kegels. You can go to your GP and ask to be referred to the local specialist gynaecology physio team. Put it on your to do list – alongside buying nappies, baby shampoo and trying to get a decent night’s sleep.

 

Lynne Sharman from Reading, Berkshire

“I was told this was the best thing since sliced bread, give me a new lease of life. It did that alright. My legs hurt terribly, some days I can barely trudge out, intimacy became difficult due to pain. It has had a huge emotional impact on me.

Lynne Sharman.
Lynne Sharman.

“I have more good days than bad since mesh removal but it’s so frustrating. It would be easy to shut yourself away and do nothing as sometimes it takes a real effort to force yourself out when you are in pain.

“For the joy of doing things you love, however, you get on and just accept you will suffer afterwards.

“It has been a physical and an emotional battle.

“I wanted to be able to have fun with my grandchildren, jump on the trampoline, lift them up, laugh, all those day to day things without worrying about leaks so went ahead and had the operation at the start of 2011 – it was the worst decision of my life.

Lynne, who has three grown up children and five grandchildren, used to do voluntary counselling after undergoing all the training and says her knowledge has helped her to learn to accept her new life – a new normal.

But she added: “The emotional impact this operation can have on a woman is devastating.

“I have been maimed in surgery with risks that I was never warned about.

“If I had known this could happen I would never have had it done.”

Lynne had a TVT in 2011. It is supposed to be a day case procedure but she woke in agony and ended up spending three days in hospital instead of being discharged the same day.

“The consultant told me it was nothing to do with the mesh implant. he told me it was because I had drank too much water and my bladder was pulling on my stitches.

“Ridiculous explanation looking back on it but I trusted him at the time.

“He told me to go home and rest and that things would settle down.

“He said tightening would ease off but it never did. It was like something was pulling and not letting go, like a contraction sensation.

“Eight months after the operation I managed a holiday in India that had already been booked way before the mesh implant but I spent many evenings in bed, it should have been a wonderful experience but really I just battled to get through it.

“By the end of 2011 I looked online and found I was not alone. I was horrified to see so many other suffering.”

Two operations

Lynne had part of the mesh removed in 2012 and the rest removed in a second operation in 2013.

She said: “At first i felt better then I started to go downhill. I now have regular myofascial physiotherapy to help release nerves and tissue and that helps.

“But this is not the life I planned. I was told nothing of the risks of this operation, nothing of potential life altering pain. It needs stopping.”

Around 1 in 3 women’ suffer at some point in their lives and the problem is on the rise among younger women who haven’t had babies. This is due to an increase in the popularity of high impact exercise classes and long distance running that put intense pressure on the pelvic floor.

The operation fits a mesh sling to support weakened muscles and nearly 100,000 women have had it done on the NHS in the last decade.

Pamela Kemp from Wokingham, Berkshire

“I am in a pain and in a nappy day and night because the operation didn’t even work,” said Pamela, who cares for her 81 year old husband Stan.

Pamela Kemp.
Pamela Kemp.

“So I have all of this extra pain and health problems for nothing, I wish I had known about the old fashioned traditional surgical fixes and demanded that, rather than trust my surgeon when he said mesh sling tapes were the gold standard fix.

“I had a TVT in 2003 and since then have never been able to walk about without a pad, it is uncomfortable, degrading, it didn’t even work yet the problems I’ve had from the plastic mesh sling that was put inside me have not stopped.”

Pamela has suffered urinary tract infections on and off for the 14 years since having mesh implanted and says she is now immune to two types of antibiotics and needs stronger doses to get rid of them.
“I never suffered UTIs before,” she said.

Eroded into urethra

“I had pains and as time went on it eroded into my urethra and under general anaesthetic my surgeon said they did something to fix it”.

“Things got gradually worse then I had a bulbous cherry lump on one side of my labia, a nurse at my surgery gave steroid cream but of course that didn’t work, so I was so referred to a gynaecologist to remove it.

“The thing split open, he had to cut deeper and went Oh My God I can’t believe it, and he pulled out five inches of my mesh tape. It was covered in flesh and it smelt rotten, it was horrible.

“He sent it away for tests. After reading the result of the clinical investigation I insisted on a translabial scan.

“A couple of weeks later my surgeon agreed to the scan, where he claimed the mesh was gone but I know mesh remains as the tape put in is way longer than five inches.

“Since that I have not suffered a UTI, however what I do have is terrible pain in my groin and down my legs, I’m on tramadol and amitryptiline for life which doesn’t get rid of the pain, it only dulls it.

“I have also developed fibromyalgia. I joined a Facebook support group called Sling The Mesh and I see many women on there who develop that since mesh.

Terrible for young mums

“It is terrible, I’m 74 and a carer for my ill husband, but I feel sorry for the young girls on the support group. They come on suffering incredible pain, infections, their lives ruined and yet they still have to care for young children. It must be really difficult for them.

“This needs stopping before more are injured.

“The surgeons and the NHS are not listening to us. How many more young healthy women are going to be hurt?

“It’s unfair, I feel so angry, it is bad enough for me – I’m a pensioner – but my heart breaks for all of the young ones who have years ahead of them on strong pain killers to try to cope with their new life.”

Around 1 in 3 women’ suffer at some point in their lives and the problem is on the rise among younger women who haven’t had babies. This is due to an increase in the popularity of high impact exercise classes and long distance running that put intense pressure on the pelvic floor.

The operation fits a mesh sling to support weakened muscles and nearly 100,000 women have had it done on the NHS in the last decade.

However, when it goes wrong the results can be catastrophic for women.

Dawn Martin from Waterlooville, Portsmouth

This is not living it is existing, nurse tells of excruciating pain since having the TVT operation.

A nurse practitioner  has been left in excruciating pain from the TVT operation which she says was the worst decision of her life. “I want to stop others suffering what I am going through because quite frankly it is hell,” said mum-of-four Dawn Martin from Waterlooville, Portsmouth.

Sadly her tale is typical of thousands of women across the globe who have trusted the medical profession when they have offered what they say is a minimally invasive procedure, a quick and simple operation with low risks and few complications.

She said: “TVT surgery has pretty much replaced the old open surgery for stress incontinence called colposuspension. This is because it’s cheaper as it is minimally invasive and can be carried out as day surgery.

“I don’t think anyone believed it could go so terribly wrong so what they’ve saved in ‘hospital stay’ costs they’ve lost to litigation!

Problems from day one

“I do believe my body has been trying to reject the tape since day one.

“Not only do I suffer intense pain but skin rashes, wheezing, rhinitis,  thrombophlebitis, worsening of pre existing asthma and extreme fatigue. The cocktail of opiate drugs given to me to control the pain caused an anaphylactic type reaction on induction of anesthesia and subsequent respiratory arrest which left me in the intensive care unit.

“The need to self catheterise until the tape was divided has caused me recurrent urinary tract infections with painful urethral and abdominal spasms. Despite being newly wed sex is virtually non existent!

“My role as a Nurse Practitioner should be non judgmental and unbiased. As Florence Nightingale said ‘ the very first requirement in a hospital is that it should do no harm.

“I tell all women who are referred for management of stress incontinence to thoroughly research mesh before agreeing to it. It’s not the quick cheap fix everyone thought it would be and it should be considered irreversible because in many instances the damage it causes is irreversible.”

She had the TVT inserted in March 2014 and as soon as she woke up she knew something was wrong.

Pain rang alarm bells

“The pain was beyond words, I’ve had plenty of operations in my time so know how it feels to come round after a procedure but this pain was something different, it rang alarm bells.”

By June the shooting and burning pains in her pelvis and pubic bone region was so intense she urged her consultant to help.

She was on Gabapentin nerve blocker medication and morphine patches to cope. In June 2014 she went back on the operating table to have the tape cut as it was believed it was either too tight or had shrunk – shrinkage is a common problem with the tape.

However, she went into respiratory arrest due to the cocktail of opiate drug given to her to control the pain so in July she went back into theatre and this time the surgeon divided the tape.

“At first my symptoms disappeared, I felt much better and finally I had relief. I married for the second time in August and all seemed well,” she said.

But within three months the searing, intense pain was back, but this time worse.

anonymous-woman-001

“I have gone from bubbly, happy, confident to taking one day at a time, I am in massive pain and feel unwell all of the time.

“I manage to work as it is the best thing for me. I love my job, it keeps my mind busy plus my work colleagues are a source of amazing support, without then I don’t know what I would do.

“But the reality is I can’t plan anything as I don’t know how I will be from one day to the next. I get by each day and get into bed early in pain, take co codamol to knock me out and then start over again the next day.

Pain takes away life as you once knew it

“It isn’t living, the pain has taken away life as I knew it and every day I live with the regret that I put myself in for an operation to cure stress urinary incontinence and have ended up with no quality of life.”

“I’m 100% convinced this sling also sets up a sensitivity reaction in women. Along with pain I have weird skin rashes and burning. – it is emotionally and physically draining.”

Dawn had the remnants of her mesh tape taken out by removal specialist Natalia Price in September 2015 but still suffers pain and interstitial cystitis.

“It never really goes away,” she said.