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April 15th 2019

Medical Negligence

Campaigning mother details ‘painful reality’ of vaginal mesh implants in You Tube diary

Josie Robinson

Josie Robinson

Senior Solicitor, Clinical Negligence

Campaigning mother details ‘painful reality’ of vaginal mesh implants in You Tube diary

A mother-of-three has launched a video diary describing how the controversial vaginal mesh implant – which is used to treat women with complications after childbirth - left her at ‘breaking point’ due to being left in constant pain and discomfort.

A mother-of-three has launched a video diary describing how the controversial vaginal mesh implant – which is used to treat women with complications after childbirth – left her at ‘breaking point’ due to being left in constant pain and discomfort.

Ceri Baker, 43, of Dartmoor, Devon, hopes her You Tube channel, ‘Vaginal Mesh Story Time’ can play an influential role in eventually seeing the implants banned from use worldwide.

But first she hopes her story will ensure thousands more women do not choose to have the procedure in the wake of a decision by the National Institute of Health and Care Excellence (NICE) to issue new guidelines paving the way for the implants to be used again.

It follows a temporary ban put in place last year over health concerns, and Mrs Baker says the new guidance is ‘devastating for mesh injured women who have been campaigning to protect others’, and fears for future generations.

Now, she hopes her story – in which she says she tries to ‘capture the depth of the mesh scandal in an entertaining, informative and educational way’ – will help inform women when making decisions over which course to take when dealing with complications after childbirth.

Ceri is currently taking legal action relating to her suffering, and is being represented by Hudgell Solicitors with regards to the treatment she received and the impact the vaginal mesh implant has had on her life.

A key issue being investigated on her behalf is the level of information provided to her, something she discusses in her video diary.

Ceri says she was assured by her surgeon that ‘a simple 45 minute procedure’ would ‘change her life forever’, bringing an end to stress urinary incontinence.

She describes how the implant, which she had in March 2017,  left her unable to sit comfortably, unable to do any of the physical activities and hobbies she always previously enjoyed with her children, and unable to have sex with her husband of 20 years, Pete, without it being ‘extremely painful’.

“This procedure was sold to me by the NHS as a small, minimally invasive procedure to relieve the stress urinary incontinence which I had developed since having my three children,” Ceri explains.

“It was something I did because I was leaking daily and it was annoying and embarrassing, especially when it came to running, carrying shopping and dancing on a night out. I was so bad I stopped having fun, but it caused no pain at all and I could in fact lead a perfectly ‘normal’ life, so long as I planned ahead.

“My surgeon said to me ‘this operation changes women’s lives’, and it did, dramatically for the worse. I was left in constant pain. It never went away. The nerve pain was so severe that I needed to take strong nerve blocking medication to function in any normal capacity.

“I was back and forth to my GP and the surgeon, and had steroid injections twice under general anaesthesia. It never got any better and I was even considering having a hysterectomy.

“Then, in January of this year I suffered a huge nerve reaction. Since then I haven’t walked for more than 30 minutes and have not been able to sit comfortably. It was then I started making the You Tube videos. I felt I had reached breaking point as I couldn’t sit at my desk to work and I felt constantly exhausted, and like I was being gradually poisoned.

“My physical and mental health were plummeting away and I realised it would never get better without having the mesh removed. I thought of the thousands of people I had read about in the same position as me and decided to share my story and shout out for all the other women whose lives had been destroyed.”

Ceri, a Special Educational Needs Coordinator and a Dyslexia specialist, fears that thousands of women like herself will have opted for vaginal mesh surgery having ‘not been warned fully of the potential consequences’, and that the new guidelines issued by NICE will now influence many to ‘take the risk’.

She added: “My surgeon told me that I’d be back on my bike after weeks. He said that if there were any minor issues it would be resolved quickly. He never actually told me what the true risks were.

“I only found out what the risks for me were two years later when I saw a letter the surgeon had sent to my GP at the time. It said we had discussed the success rate and reoperation risks together with the risk of pelvic organ damage, chronic pain, dyspareunia (difficult or painful sexual intercourse), mesh erosion and rejection, but that I still wished to proceed. This was simply not true at all.

“If any person, without a life-threatening condition, was offered that selection box of possible outcomes, would they wish to proceed? I wouldn’t. I would not have risked all of that for dry knickers.

“I fear now that with these new guidelines women will think it has been given the all clear, and that surgeons can’t get it wrong. They can. Listen to the women who have been there and are suffering. Don’t take the risk.”

Legal case investigating lack of information provided over risk of injury

Ceri’s solicitor, Josie Robinson, says she feels a lack of clear understanding of the risks remains an issue, and that she was surprised to see NICE recommend the use of implants again, ahead of the conclusion of an Independent Medicines and Medical Devices Safety Review into their use.

The Department of Health and Social Care and NHS England agreed to immediately suspend their use last July after the review heard from many women about the ‘life-changing’ and ‘life-threatening injuries’ they had suffered.

Baroness Cumberlege, who is leading the review, said that a number of conditions must be met before the use of vaginal mesh could again be considered safe – conditions she says have not yet been met and will not be for ‘some considerable time.

Mrs Robinson said: “Consent and full understanding of the risks is imperative in every surgical procedure, and it is certainly Ceri’s case, and that of other women we are currently representing, that this consent and understanding was not in place with regard to vaginal mesh implants.

“Given that the medical devices safety review is still to be concluded it is both surprising and concerning to see guidance being issued to suggest it is safe to use again. Ceri’s story is similar to so many other women in that her health suffered extremely after having a mesh implant fitted.

“We feel people should be held accountable for this suffering, particularly in cases where other options for treatment could and should have been explored.”

‘I needed mesh removed to save myself – now I am heading into the unknown’

The mesh implants are designed to be permanent and during the first weeks after surgery become embedded in the surrounding tissue to provide better pelvic support. This means surgeons and doctors have to weigh up the risk of damage to nerves and nearby organs, including the bladder and bowel, before agreeing to their removal.

Ceri says removal was the only hope for her to envisage returning to ‘any form of normality’, but had to fund it herself.

“The NHS waiting time for referral, scans and surgery was looking likely to be over a year away, which is quite frankly a disgrace given the damage they have done to me,” she said.

“I paid for privately in order to save myself. If I waited a year it is very likely I would have been unable to work or lead anywhere near a normal life.

“Now post removal I am unable to do anything at all physically and we have had to cancel yet another family holiday. I will need three to six months off work to recover and have been told it will be up to two years for full nerve and muscle recovery.

“I am completely exhausted and maintaining good mental health is extremely challenging, especially as I am usually super active physically and mentally.

“My main sadness as a mother is that I am losing precious time with my children again that I can never get back or ever be compensated for.

“Since becoming unmanageably unwell with my mesh injury I have joined many support groups online and seen that thousands of women are campaigning from all over the world for their voices to be heard and for vaginal mesh to be banned.

“The current lifting of the ban by the recent NICE guidelines is devastating for all mesh injured women and for future generations of women. They are clearly not hearing the reality of trying to live with mesh injury.

“Although my injury is significant and life-changing, I feel I have got off lightly. Many women are fully housebound and have lost everything.

“The NHS still isn’t responding quickly to the plight of these desperately ill women or coming forward to find them and give them a clear plan of intervention with real care and time plans for removal, and further corrective surgery.

“Instead, desperately ill women all over the UK are being left to fight this whole battle for themselves. They are not being offered scans with immediacy, or at all, which is the best way to identify the location of the mesh and whether it is currently damaging organs and potentially nerves.

“Women are repeatedly seeking out and paying privately for scans – often carried out at NHS hospitals – at the cost of hundreds of pounds to confirm their own injury and to know where their health stands.

“I will now recover into the ‘new me’ – whatever that may be. I just don’t know, I am heading into the unknown and hoping that I can rebuild now that the toxic and debilitating mesh is out of me. It would be great to be the person I was years ago, who loved fun and activities like cycling and dancing.

“The impact on family life has been enormous. After implant surgery we had to cancel a family holiday we had waited for two years for as I couldn’t sit comfortably for months, then of course things got worse. I have missed out on doing things with my children.

“My personal mission has become about creating these homemade videos to inspire women to take back their power and reclaim their bodies and sexuality, which in most mesh injured women, has been lost.

“I also want to demonstrate the wider loss to the whole community when it comes to mesh injury. Sadly, mesh injured women will never be the same. They have lost so very much and their bodies are damaged and altered forever.”

Visit Ceri’s You Tube page and watch her video diaries here: https://www.youtube.com/channel/UCRGUo-BinFS9zEaHa6X5fgg

 

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