A woman’s problem

Kath Sansom cries when she thinks about some of the stories she’s heard over the past five years. There are stories of young mothers left using wheelchairs and walking sticks. There are stories of women who have had their bowels and bladders removed. There are stories of women on all fours screaming in pain while doctors tell them their suffering is imagined.

The stories that haunt Sansom all have one thing in common. They belong to women who have undergone procedures to insert pelvic mesh implants – also known as vaginal mesh.

Used as a surgical option to treat complications from childbirth including prolapse and urinary incontinence, vaginal mesh was introduced in the late nineties as an alternative to more complex and expensive surgical repair.

“There are lots of superb doctors, don’t get me wrong, but there is this culture of misogyny.”

The procedure involves surgeons inserting a plastic mesh product to hold the pelvic organs in place. For some, the surgery has been a success. But thousands of women who have undergone the procedure have been left with life-changing complications including nerve damage, chronic pain and sexual problems. It is those women Sansom has spent the last five years fighting for.

A regional paper journalist accustomed to writing about council meetings and local human interest, Sansom had no idea of the magnitude of the story that would arrive on her lap after she had the vaginal mesh procedure in March 2015.

“I came out in a lot of pain,” she says. “It was supposed to be easy surgery, back at your desk in a week, but a week later I was still in a lot of pain.

“I’m a single parent and at that point I was a freelance journalist so I had no option but to go to work. Even going up one flight of stairs to the office was just too painful. By week two I was still in a lot of pain. I could barely walk my dog. Before the operation I was boxing, mountain biking and doing all these sports, and now I could hardly walk. It just made no sense to me.

“I did a Google search and came across a woman who had written a blog about her story with mesh, and it was my story. It was exactly the same as me.”

Sansom emailed the blogger and the two women spoke on the phone that night. “She told me women were going back to their surgeons and the surgeons were denying the mesh was causing a problem. All these women had been trying to get their voices heard but it was quite embarrassing and it was a taboo subject, so they hadn’t got anywhere.”

Determined to shine a light on the scandal of women’s suffering, Sansom started a Facebook group titled Sling the Mesh. It was then that the stories started flooding in, and five years on the group has more than 8,000 members.

“We’ve got women who have had the mesh slicing through their urethra, so they have had to have a reconstruction or a catheter,” says Sansom. “We’ve got women who have had to have their bowels and bladders removed because
the mesh has sliced into them, so they have been left with a colostomy bag. We’ve got women where the mesh has sliced through their vaginal walls and it has cut their partners when they are having sex.

“We have one women whose mesh managed to migrate and started coming through her thigh and she got necrosis. We have women whose legs shake every time they walk. We have women who are walking with sticks. Too many young, healthy vibrant women were put forward for this operation when they should have tried physiotherapy first.

“I’ve got one woman who had the operation at 26. She now has three young children and is a single parent. She is at her wits’ end trying to bring up three little children on her own in lots of pain, with no help.”

Sansom bursts into tears on the phone. “Just the thought of this woman on her own, struggling,” she says. “Some stories just hit you in the chest and take your breath away, and that’s how I’ve been living for five years now, overseeing that page. Every day it’s like a punch to the guts when a new member comes on and tells their story.”

The stories of physical suffering are hard enough to hear, but the mental anguish caused by the unwillingness of GPs and surgeons to take patients’ concerns seriously is where the scandal takes an even darker turn.

Last month, a review chaired by Baroness Julia Cumberlege found lives have been ruined because officials failed to hear the concerns of women given drugs and procedures that caused them or their babies considerable harm.

The review assessed harrowing details about vaginal mesh, pregnancy test Primodos and epilepsy drug sodium valproate and found too often worries and complaints were dismissed as “women’s problems”.

Vaginal mesh surgery was halted by the government in July 2018 to avoid further risk of life-changing injuries, and the Cumberlege review has warned against pushing innovative treatments without enough long-term monitoring, and criticises manufacturers for being motivated by sales ahead of safety.

But for Sansom, the fight isn’t over. At the heart of the story lies accusations of poor regulation, lack of clinical trials, corruption, cover-ups and conflicts of interest.

“I have lost trust in the medical profession,” says Sansom. “I wish I could say I haven’t, but I have. I’ve read so much scientific evidence that’s flawed, so much evidence that’s biased. I read once that the medical industry is darker than the tobacco industry. I read that at the start of the campaign and thought no, but it is, it’s so dark.

“There’s this culture of denial, but it’s not just denial, it’s defensive. The majority of people who have gone back to their surgeon [to report vaginal mesh complications] have been laughed at. Sometimes the surgeon has put his head on the desk and banged his fist in a mocking way. We had one woman who told her surgeon she’d lost her sex life and his response was: ‘Women over 50 shouldn’t be having sex anyway.’

“There’s definitely deeply entrenched misogyny there and belittling of women and seeing them as silly little creatures who obviously aren’t strong enough. There is lots of that, and that needs to change, but that’s not a system thing – that’s an individual thing, and a societal thing and I have no idea how you even change that. There are lots of superb doctors, don’t get me wrong, but there is this culture of misogyny.”

Baroness Cumberlege’s review is the first step towards justice for those who have been injured, belittled and ignored. But Sansom is still left with the stories of women whose lives have been turned upside down.

“When I was really sad I’d get up early in the morning and drive to the coast and sit with a cup of tea on the beach wall, staring out at the sea, and I would just cry,” she says. “You can’t witness that much human misery without it having a massive impact on you.

“I used to be in touch with a Canadian hernia surgeon who hated mesh and campaigned for most of his career against hernia mesh. We’d often email each other and he was exactly the same. He said it was like fighting the devil and that there would be times where it just hurts your soul. You can’t witness that much human devastation and it not take a toll on you somehow.”