A Banbridge woman who suffered 12 years of pain after having a vaginal mesh implant fitted is leading the fight for a moratorium on the use of the devices in Northern Ireland.
Drawing on her own painful experience, Jackie Harvey has set up an online support group to offer help and advice to local women about mesh implants, and raise awareness about the complications associated with them.
The implants are used by surgeons in an operation to treat pelvic organ prolapse and urinary incontinence, which can be common after childbirth. But following reports of many women being left in agonising pain, there have been calls for the procedure to be banned, or at least suspended until the long-term safety of the implants can be evaluated.
At the age of 36, a gynaecologist recommended that Jackie have a vaginal mesh implant fitted as a way of alleviating the urinary incontinence problem she’d been left with after having her second child.
In March 2005 she underwent surgery and it worked well. She recovered quickly, but unfortunately the plastic implant soon started to cause her problems.
“After a year or two I noticed the tops of my legs were getting really painful and stiff and I just thought I must be getting old, though I was only 38 at the time,” she explained.
“I went to doctors various times about the pain in my legs and got x-rays, but they didn’t really show anything. In 2009 I stopped doing any sort of impact exercise. I couldn’t run. I couldn’t really walk very far without getting pain in my legs, my feet and hips. I kept going back to the doctor and nothing was showing. In 2013 I was really struggling and I went to rheumatologist who told me that I didn’t have arthritis. I went to an orthopaedic consultant who told me he couldn’t see anything wrong with me. And then by 2015 I had seen an article online where a woman called Kath Sansom had started a campaign group called ‘Sling The Mesh’ and she was suffering from very similar complications to me, and it was just like a lightbulb going off in my head - this was 10 years after I’d had it put in.”
Jackie, who claims she wasn’t told about the risks so couldn’t make an informed decision about getting the implant, says the pain she suffered as a result of the device ruined 12 years of her life.
“It had a really detrimental impact on my life. I was struggling to walk and I was in pain and exhausted every single day of my life. I felt about 90. I was stiff, sore and I just felt ill. For me to go to a doctor and my issues not to be recognised or accepted was just horrendous.”
Jackie was referred to a gynaecologist who told her the implant wasn’t causing her problems, but she refused to accept that was the case. She decided she had no other option but to challenge the doctor’s findings, and eventually had to pay for specialist treatment in England.
The 49-year-old office worker had a scan in London which showed that her implant was in the wrong place and was causing her pain. She finally underwent surgery at a hospital in Oxford in March this year to have her mesh removed.
“As soon as I woke up the difference was amazing,” she said. “I’m still not perfect, but I’m an awful lot better than I was.”
Through the UK-wide ‘Sling The Mesh’ group, Jackie heard many stories of women from Northern Ireland who are suffering similar problems to those she experienced. So, in a bid to help them, she decided to set up her own local support group on Facebook, and it already has around 200 members.
“This is a repeated story across the UK, not just in Northern Ireland,” she continued. “These ladies are going to their surgeons and they are being told ‘It’s not the mesh that’s causing your problems’, or ‘It’s all in your head’. It’s almost like they’re reading off a script.
“These women are in pain, some of them are constantly getting infections, others are on antibiotics every day.
“Their lives are a misery, they have no sex lives, their marriages have broken down, some have lost their jobs, they can’t enjoy their life, it’s just horrendous. That’s what spurred me on to push for some sort of recognition that there is an issue in Northern Ireland and something has to be done.”
While the NHS says “the majority of women treated with mesh respond well to the treatment”, it acknowledges that “the Medicines & Healthcare products Regulatory Agency (MHRA) has received reports of complications associated with vaginal meshes - mostly regarding persistent pain, sexual problems, mesh exposure through vaginal tissues and occasionally injury to nearby organs, such as the bladder or bowel.”
Jackie, who was the first woman to report her implant to the Northern Ireland Adverse Incident Centre at Stormont, is campaigning for the use of vaginal mesh implants to be suspended.
“In Scotland there was a moratorium put on the use of mesh in 2014, by the Scottish government, and it doesn’t make sense that in the rest of the UK women aren’t afforded the same protection,” she said.
“We want the use of mesh suspended whilst there is a review ongoing. We want the same protection that they have in Scotland. We also want a national register to register how many mesh complications there actually are.
“So many women are being left traumatised by this. They are going to doctors for help and are just basically being fobbed off. It’s appalling. I hear the same story day in, day out from women looking for help and there’s nobody there to help them. Where do these women go for help? They are being left on the scrapheap and that’s just heartbreaking.”
Jackie is urging women who need help and advice about vaginal mesh implants to contact her via her Facebook page ‘TVT(O) POP Mesh Problems N Ireland’ or by email: firstname.lastname@example.org