Mesh Down Under founder Carmel Berry. Photo: Supplied / Paul C Schrader
A woman who was told "a bit of ribbon" would be inserted in her says she never knew it was mesh - or the long term implications it would have on her.
The Ministry of Health's call for a pause the use of surgical mesh to treat stress urinary incontinence was "long overdue", Mesh Down Under founder Carmel Berry said, but also validating that the concerns of many injured patients was being taken seriously.
The use of mesh has been controversial after hundreds of women suffered irreversible complications that left them with severe or chronic pain.
Director-General of Health Dr Diana Sarfati said the Surgical Mesh Roundtable had been investigating a pause since earlier this year.
She called for a temporary halt to mesh use, effective from Wednesday, to allow steps to be put in place to reduce the harms linked to the procedure.
Steps include implementing a registry to monitor patients post surgery, a detailed, informed consent process, that ensures that women have a good understanding of all the different options available to them, the establishment of multidisciplinary teams to help establish the best treatment options and a credentialing process, to ensure the surgeons performing the procedure are able to do so safely.
Berry told Morning Report the pause was something that her advocacy group had been asking for for a long time.
"[It's] taken a long time for everyone to see what we are trying to say" - Carmel Berry
"It is also quite exciting and validating that the director-general has seen the evidence that was collated and made this call, so it's good."
It was hard to know what had taken so long, she said. The United Kingdom had banned vaginal mesh surgery in 2018 and Berry thought it would be the "catalyst" for New Zealand to follow suit - but that did not happen.
"[It's] taken a long time for everyone to see what we are trying to say."
Berry said she was not informed "at all" about the potential risks involved when she had her surgery.
"'We're just going to pop a bit of ribbon inside you', I think are the words I was told.
"I didn't know it was mesh, I didn't know the risks, I didn't know the lifelong, life changing situation or complications - it was just 'this is what we do'. That's what happened to me."
Berry said the pause was a good start - and it would take time for evidence to be collated and for the Surgical Mesh Roundtable group to put the necessary steps in place that it may never come back.
She acknowledged the surgery did work for some women - but there was no real knowledge of the long-term impacts.
Some women in her group of more than 1000 had said the surgery was fine for them for up to 20 years - but as they got older, complications began that could be related to the mesh.
The Ministry of Health said the temporary ban would not be lifted until the measures were introduced to reduce the harms associated with the insertion of mesh - expected to occur within 12 months Photo: 123RF
Pause could be up to one year
Manatū Hauora chief medical officer Dr Joe Bourne told Morning Report the steps being put in place to ensure medical professionals were confident the mesh surgery could start up again would be done over the next 12 months.
Bourne said the ministry was working closely to identify the number of women currently waiting for the surgery - believed to be around 90.
"But there are a range of factors that need to be in place that will provide us with assurance that it is safe to lift the pause" - Joe Bourne
He appreciated there could be people unsettled with the news of the pause - and said it was working to make sure they all got an appointment with their medical team to discuss their options moving forward.
"But there are a range of factors that need to be in place that will provide us with assurance that it is safe to lift the pause."
Bourne said the ministry acknowledged there was complications that could occur with using the mesh and he appreciated the input from people who had been injured by it in the past.
It was important to hear of the harm caused to some women by the procedure so the ministry could do all things possible to eliminate preventable harm, he said.
"Technically, it's a complex procedure to undertake. We believe that there is no inherent problem with the mesh itself, but it is really important that the right patients select it so they really understand what is the best option is for them which may or may not be surgery at all.
"And then it's a case of the technical expertise being right to insert the mesh, and then the appropriate follow-up afterwards. So there are a number of factors that are all equally important."
Bourne said the ministry was also reaching out to anyone who had had the surgery recently in case of concern.
He said they should be reassured that they would have a "far better" understanding of potential complications - but should reach out to their medical team if they needed further information.
"For the women waiting, stress urinary incontinence is incredibly disabling for many people, and there are other options available."
But for the future, Bourne said: "We are confident that the processes we are going to put in place will enable us" to prevent many more injuries once the pause is lifted.
Stress urinary incontinence 'a wicked problem'
The Royal Australian and New Zealand College of Obstetricians and Gynaecologists was standing behind the decision - but hoped the pause will be lifted as soon as possible.
It has advised its members to comply while procedures for training and credentialing are improved.
College spokesperson Dr Sue Fleming told Morning Report the "pain and suffering" of those who have experienced complications with the use of surgical mesh needed to be acknowledged.
"The pause provides an opportunity to really strengthen our focus on the quality systems we that know will improve outcomes."
Fleming said the UK ban in 2018 - which is ongoing - was certainly not wanted in New Zealand.
"We need to remember that stress urinary incontinence is a wicked problem and there's not yet a single perfect solution to treatment."
The profession, as a whole, believed surgical mesh had an important place in treatment and this pause would help strengthen that, she said.
Multiple women share similar story
Taranaki woman Valerie Roughton burst into tears at the news, relieved patients like her were finally being heard. Complications from her treatment forced her to quit her job as a nurse after suffering autoimmune symptoms.
"Joint pain, back pain to the extent where I was spending days lying in bed crying. I've developed patches of psoriasis, have ongoing nausea and I have repeated UTIs (urinary tract infection) like I'm talking about one every six weeks," Roughton said.
Roughton is calling for a long- term study into the affects on all surgical mesh patients.
Mesh Down Under co-founder Patricia Sullivan has been fighting for the suspension of surgical mesh for a decade. She had an implant 2008 and suffered a chronic infection caused by the surgical mesh eroding.
She said it had been hard to get surgeons to take women's health problems seriously.
"Women have been gaslit and lied to about to this, just absolutely shocking and i'm so excited that finally this pause is in place for everybody to step back, take a breathe and say 'no more damage'," Sullivan said
Marie Bird said the mesh made it difficult to pass urine and led to recurring infections.
But despite a request from her doctor, ACC declined to accept her claim have it removed for six years. Since she was not in a position to pay to have it done, she fought constant infections and moved to using a catheter full-time.
It was not until she caught the issue being discussed in the news and began to search for women with similar experiences that she began to realise she was not alone.
"It was really good to know that there was more people out there and I wasn't going crazy, all these things were actually happening to my body," Bird said.
Sally Walker created a petition last year calling for its suspension.
She had mesh implanted in 2009 but 10 operations later, she had her bladder removed and her vagina sewn closed to save her life.
She said it was important to keep fighting for other women, including those in their 20s.
A slow response in New Zealand compared to countries overseas could come down to lack of awareness, she said.
"When you're told it's all in your head you hibernate away, when you're wetting yourself day in and day out you stay at home and the story wasn't out there. When my story was published it brought an awful lot of women out because they found the courage to do it and it took one person to make everybody aware."
Some of the steps to reduce harm in the procedure include introducing a registry to monitor patients post-surgery and a detailed consent process.
Nicola Jordan said this would have made a difference for her.
"No one knows that you exist and nobody believes that anything happened to you because there's no record, so having a record is a good idea. Having it credential is a good idea, mine was put in too tight, twisted and into my hip. You don't get compensation for anything like that a lot of the time," Jordan said.