THEY STOOD IN the cold outside Leinster House, huddled together with the rain pelting down on them. For many of the members of Mesh Survivors Ireland, the road to the Dáil has been a long one and on the way they have suffered pain and stress, been brushed aside and ignored.
Thousands of women across the world have suffered complications after having a vaginal mesh device implanted. These devices, made with polypropylene – a type of plastic – are used in surgeries to address stress urinary incontinence and pelvic prolapse, conditions women can suffer after natural childbirth.
Each of the women in the support group, which was established in October last year, believed they were the only ones who had suffered in this way after these procedures until they saw the global media coverage as the scandal broke in the US, Australia, New Zealand and then the UK. TheJournal.ie began an investigation into the scale of the problem in Ireland in September last year and now over 100 women have come forward.
Protesting outside, accompanied by her husband Darren, Lesley-Anne Stephens told TheJournal.ie she was just 36 when she had her operation, which was to address stress incontinence. Now, at 39 she has to use a walking stick for support.
Her incontinence was so bad she said she would “drench” herself when she got out of her car, but if she could go back she still would not get the procedure.
“As it is I’m incontinent and in pain,” she explained. “We were told this was my fix, that this was going to change my life for the better.”
She has had two partial removal procedures, but still has some of the mesh tape inside her. The device is designed in such a way that the tissue around it grows into the tape so it can act as a support for the bladder wall.
This, however, makes it extremely difficult to fully remove without causing damage to the internal tissue and other organs around it.
“There is another piece of mesh sticking out through my skin – I can feel it. I can’t spend any time with my husband, I can’t lift our girls, I can’t walk very far. I can’t drink at all – it goes straight through me.
“I know it sounds silly, but I had cereal one morning with a small bit of milk on it and I went to the toilet 56 times between nine in the morning and three in the day and I was exhausted. You can’t go anywhere if you’re going to take a little drink.”
“It’s very difficult to hear a five-year-old making comments about where we should and shouldn’t go,” her husband Darren added.
Things that we would have done in the past automatically, to hear your five-year-old say ‘We can’t go there because there’s lots of steps and it’ll be difficult for Mam”, that’s very difficult. It’s had an impact on every aspect of Lesley-Anne’s life and her family life, her friends, every aspect of who she is.
‘Suffering in silence’
After the protest, inside Leinster House, TDs were given a chance to learn about the issue.
They heard from Sinn Féin’s Louise O’Reilly, who had earlier raised the topic with the Taoiseach, Melanie Power, a solicitor representing many of the women affected, and Margaret Byrne, who suffered complications after her surgery, as well as two experts.
Power, who set up the support group Mesh Survivors Ireland said women who experienced complications have “suffered in silence for far too long”. More than 100 Irish woman who consider themselves as being mesh injured have contacted her and she said they had been “butchered” by the device, adding that she did not use that term lightly.
The Chief Medical Officer is currently compiling a report on the issue, but Power said the HSE needs to conduct an audit to make it clear how many women have had these procedures and how many have experienced complications.
She said the reality for some of these women now is a reliance on disability allowance, a cocktail of medication, the loss of their sex life, relationship breakdowns, depression, isolation and suicide attempts.
‘Traumatic’
Margaret Byrne, who shared her story with TheJournal.ie last year, spoke at the presentation. She underwent one of these operations in 2000 as a treatment for stress incontinence.
She told TDs that she first realised something had gone wrong with the operation when she and her husband resumed sexual relations.
There was an audible gasp from those listening to Byrne when she told them there was “something sticking there, cutting my husband” and that it “had a sharp edge”.
She eventually had a procedure to remove the device, but she went through three years of procedures before that, which she said she found traumatic.
“I can still see the lights overhead in the theatre.”
One woman told TDs she had been a private patient and had to pay €40,000 for two procedures to remove the mesh.
Another woman from Belfast said she had been examined a number of times in Northern Ireland and doctors had found no issue, but when she had the same examination in London, she was told she had significant vaginal scarring.
In testimonies from other women, read out by Melanie Power, they reported chronic urinary tract infections, chronic pain and erosion into their bladders, urethras and vaginal walls. One woman said she was on so many opiates for the pain she became addicted at the age of 64.
Another, similar to Margaret Byrne, said her husband had been “physically injured by the device” during intercourse.
‘Pressure from industry’
The striking personal stories were followed up by presentations from two experts. The first was a consultant from Scotland called Dr Wael Agur who himself had done mesh procedures over a five-year period. He stopped in 2014 due to concerns he had about the risks, which he believes outweigh the benefits.
He told TDs he had a junior doctor conduct research about all of the patients he had worked on between 2009 and 2014 and showed them an email on the screen that this doctor sent him halfway through.
She told him the patients either had no complications or “neverending ones”.
Agur believes there was “huge pressure from industry” to move away from the old standard of procedures, which did not involve the use of any devices and therefore did not make any money for manufacturers.
In Scotland, the number of operations for stress incontinence doubled after the use of mesh tape became the gold standard.
This, he said, was not as a result of more women suffering stress incontinence – surgeons started offering the procedure to women who had mild incontinence or just urinary urgency.
Agur said many doctors who performed these procedures did not link up complications afterwards such as chronic pain or issues with sexual intercourse after the surgeries because the instructions from manufacturers did not list them as risks.
He finished by telling TDs he could understand why clinicians did not want to be seen to take a step backwards by reverting back to the old procedures. However, he said there is “always something you can do” if the patient has complications with non-mesh operations.
“With mesh, it can be irreversible and there is little we can do.”
Trinity College Professor David Taylor was the second expert to speak on the issue. He has been researching these procedures and he said one study, which looked at outcomes from over 11,000 patients who had operations for prolapse found there was a failure rate of 10%.
He believes there may be as many as 1,000 women in Ireland suffering from mesh erosion issues.
Taylor said he can not find any piece of research where someone has taken a piece of mesh that has failed and been removed from a patient to test it. There are strict procedures around medical devices that fail, he said, and he said the HSE should be enforcing these.
Sympathy and concern
Speaking in the Dáil on the issue today, Taoiseach Leo Varadkar said his “sympathy and concern” goes to any patient suffering from complications.
“I absolutely expect that the HSE and the Department of Health will consider this matter based on evidence and not just evidence from this State. As is the norm in any kind of medical issue, one examines peer-reviewed international evidence as well as domestic evidence and take them together,” he said in response to a question from Sinn Féin’s Louise O’Reilly.
In health care, one will always find evidence going one way and then evidence going the other way. It is therefore necessary to take all the evidence together to see which of it is peer-reviewed and strongest and make a judgment based on that.
“Any response from the Government, the HSE and the Department of Health will be compassionate and understanding and respectful of the pain and suffering of anyone who is enduring complications as a result of an operation. Further, any actions taken by government will have to be guided by best clinical advice from the experts in the field and it will have to be evidence-based.”
If you’ve been affected by this issue, we want to hear your story. Get in touch at michelle@thejournal.ie.
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