Calls for better support for transvaginal mesh survivors
Women who have undergone transvaginal mesh surgery are suffering chronic to debilitating pain and need better support to deal with the physical, mental and social consequences of the surgery, a study has found.
The study, conducted by the Health and Social Care Alliance Scotland, has led to calls for the Scottish Government to set up a stakeholder participation group and better psychological services where needed.
The Alliance team engaged with 46 women from across Scotland who all shared their experience of living with complications following transvaginal mesh surgery and the impact these complications have had on their lives.
In the report, titled My Life, My Experience, the women shared how the surgery and complications had impacted their physical and mental health, relationships, finances and confidence in healthcare systems.
“My physical, emotional and mental health has been impacted. I can’t go out and I feel stuck inside,” one woman said, in the report.
Another said: “It’s like having a cancer in a way – it’s hard having a foreign body in you that you just want out.”
“I feel this has taken 10 to 20 years off my life and that doesn’t feel good. My kids could do with their mum a bit longer,” said a third respondent.
All women involved said they had experienced more than one symptom that was mesh related, some women reported experiencing two or three symptoms and others 18 symptoms.
Pain in the legs, groin, abdomen and back was reported by more than 30 of the women, ranging from chronic to severe and debilitating pain.
Urinary tract infections were reported by 14 women, two of which developed sepsis as a result. Twenty-one women had transvaginal mesh surgery as a result of urinary incontinence, and of these ten said they continued to suffer from this after the surgery.
Neuropathic symptoms were the third highest complication, with 11 women describing a loss of sensation, tingling, limb weakness and “twitchy legs”. Bowel control issues were also common, with ten women saying they lived with reduced bowel control and in some cases incontinence.
Aside from the physical complications, many women said they had experienced depression, anxiety, and a loss of self-worth. They also discussed how the surgery had negatively impacted their relationships, friendships and finances.
Asked to consider what would be a “good outcome or them moving forward”, most of the women reported a strong desire that they did not want anyone else to go through what they had experienced and “a sincere hope that lessons would be learned and access to services improved”.
The women recommended: there should be “full removal of mesh for those who still wished it”; a permanent ban on transvaginal mesh implants in Scotland; recognition of the impact the mesh has had on their lives; “clear and co-ordinated care pathways” and easier access to services; awareness of mesh-related complications among healthcare professionals; improved communication between primary and secondary care and “to be symptom free and able to return to normal life”.
Alliance director Irene Oldfather thanked the women for sharing their stories and said the body trusts “that there is a desire for ongoing involvement with those with lived experience”.
“We recommend the setting up of a stakeholder participation group to monitor future pathways for women with complications and stress incontinence,” she said.
The Alliance also recommended support groups be established at local levels and a more formal national group be set up. It found consideration should be given to “different mechanisms as to how women can be supported to achieve optimum health and wellbeing” and for “person-centred approaches to be put in place and evident involving a range of allied health professionals and others such as community link workers and/or psychological services where necessary and appropriate".
The report was submitted to the Scottish Government today.
First Minister Nicola Sturgeon met with campaigners this morning in Glasgow.
“I am absolutely committed and determined that we will do everything possible to get these women the treatment and the care that they need, but also that we take steps to answer any questions that they have about their past treatment,” Sturgeon said, after the meeting.
“A wide range of issues have been raised today and I’ve given them a commitment that systematically, one by one, we will work through them.”
In September last year, chief medical officer Catherine Calderwood wrote to health boards to "immediately halt" the procedure after the implant was listed as a factor in the death of a woman in West Lothian.
The procedure had been suspended in Scotland for four years while a safety review was carried out, and then a subsequent review into the process of the first review was launched after it was branded an industry-led ‘whitewash’.
Another 500 women had undergone the procedure before the ban, despite warning of severe complications in some cases.