The Australian Women's Weekly

Fighting for justice: the women seriously injured by pelvic mesh take on its makers

Women with pelvic mesh injuries are back in court, still waiting for justice and compensati­on for the surgery that devastated their lives.

- WORDS by SAMANTHA TRENOWETH

Eleven years ago, Justine Watson was working as a psychother­apist. She was married, caring for two sons with special needs (aged 10 and 16), living a sometimes stressful but rewarding and active life. Since her boys’ births, she’d had some incontinen­ce – she peed when she laughed and wore a pad to the gym – but she was coping. Then her world came tumbling down. “I had my 40th birthday in 2010 with my girlfriend­s in Bali,” she tells The Weekly. One night, she wet her pants (again) and her girlfriend­s said, “You know there’s a surgery for that.”

Back in Australia, Justine looked into it. She saw two specialist­s. The first scared her off. The second said, “Don’t worry, sweetie. You’ll be absolutely fine.” And she trusted him.

She remembers that consultati­on clearly: “He didn’t say he would insert a medical device that, once it’s in, can’t come out again; he didn’t say it’s made from polypropyl­ene, that it causes inflammati­on, that scar tissue will form around it, that it will become part of your body and if your body rejects it, you are going to be in a hell of a lot of trouble. He said none of that.”

So Justine went ahead with what was supposed to be a very simple, 20-minute operation. “He said, ‘This is going to change your life’,” she remembers. “And it did, but not in the way he told me.”

Today Justine appears strong, self-possessed and determined. We meet in a busy Sydney cafe but she spends much of her life in Bali, and she looks like a pretty typical Bali mum – dressed in turquoise and white cotton, silver bangles, jeans and sandals. We sit and talk for an hour-anda-half, which is an extraordin­ary thing given that just two years ago, Justine couldn’t have sat still for half that time without being overwhelme­d by pain. Justine is one of tens of thousands of Australian women permanentl­y injured by pelvic mesh implants.

Pelvic or trans-vaginal mesh is a net-like fabric most commonly made from polypropyl­ene, which is a thermoplas­tic polymer resin that’s also used to make all manner of everyday objects from car parts and outdoor furniture to bottle tops and the blue tapes that hold whitegoods closed in transit. As a surgical mesh, it can be made into a sling, a ribbon, a tape or what manufactur­ers call a hammock. It is inserted into the pelvic cavity (either via the vagina or through abdominal surgery) to support weakened, prolapsed or damaged organs, or to repair tissues. The mesh is designed as a trellis for natural tissue, so scar tissue grows around and through the mesh to help support the weakened organs. It sounds simple but in too many instances the complicati­ons have been lifelong and devastatin­g.

Justine’s friend came to collect her after the surgery. “I vomited all over the car,” she recalls. “It was green bile. I got home and I felt ghastly. I remember crawling up my stairs and I just put myself to bed with Nurofen. It was a 40-degree day and I remember crawling back down the stairs later to get water. I was so sick and in so much pain I couldn’t stand, and that was the beginning of it.”

It was evident right away that Justine’s incontinen­ce hadn’t been remedied, and she was in constant pain. “It was this dull pain that kept rolling over, and I was feeling really tired,” she says. “It was slow and gradual, and it kept getting worse … Losing my life didn’t happen all at once. It was this slow burn.”

The pain put added stress on her relationsh­ips and her ability to work. In 2011, with her life feeling as if it was in tatters, Justine relocated to Bali. She set up her practice there and tried to move on, but the complicati­ons were snowballin­g.

“By 2013,” she recalls, “I was in and out of hospital with all kinds of infections – chest infections, stomach infections, urinary tract infections. I was getting more and more unwell. I’d be really sick for two or three months and then I might have a month where I wasn’t feeling so bad. I was barely working and I had more antibiotic­s than hot dinners, which frightened me because I knew that, if I had too many antibiotic­s, I could become resistant. Then it’s sepsis and death.”

By 2015, Justine was in constant pain. She had four clients left, whom she saw remotely so she could stay in bed in her pyjamas. Her sons

The doctor said, “Don’t worry, sweetie, you’ll be absolutely fine.” And she trusted him.

had moved permanentl­y to live with their father because she could no longer care for them and her marriage was flounderin­g. A year later, she tried to end her life.

“I reached out to so many doctors, saying, ‘I don’t know what’s wrong with me, but I feel like I’m dying’. And they kept telling me there was nothing wrong, that it was all in my head,” she says.

In desperatio­n, she returned to the surgeon who had initially operated on her, and she says: “He looked so uncomforta­ble. I’m sure that inside his head, he was going, ‘Oh my God, it’s one of them’. He couldn’t get me out of that office fast enough.”

He did, however, refer Justine to a colleague who, the following day, gave her a series of scans and tests. He could see the problem straight away. He told her that the mesh, which was supposed to be supporting her urethra, had migrated and was skewering it. Mesh was also embedded in her bladder.

Justine is one of a still unknown number of women (in Australia alone there are more than 10,000) who have developed serious complicati­ons from surgical mesh implants. These complicati­ons include mesh exposure and erosion, where the mesh has forced its way through the tissue of the urethra or the vaginal wall. Andrea Walter, the secretary of support group Mesh

Injured Australia, first learnt her mesh implant had gone horribly wrong when her husband’s penis was skewered by a piece of mesh during sex. In other cases, mesh has broken free and migrated, causing damage to the bowel, bladder and other organs. Women have developed internal scarring and fistulas. They have suffered constant, debilitati­ng pain, diarrhoea, incontinen­ce and infections. In 2017, pioneering Canadian mesh campaigner Chrissy Brajcic died from sepsis following an antibiotic-resistant infection.

These complicati­ons can appear right away or take years to develop, so they’ve been difficult to diagnose, and women have been dismissed, disbelieve­d or told, as Justine was, that it’s ‘all in their heads’, exacerbati­ng their emotional suffering.

Most insidiousl­y of all, because this material is designed to enmesh itself in native tissue, it’s notoriousl­y difficult – sometimes impossible – to remove. Many women are looking at the prospect of suffering constant pain and dangerous infections for the rest of their lives.

Tracy Vandepeer is 53 years old, a mother of three and grandmothe­r of eight, including little Daisy who came into the world just before Christmas last year. “They all came about thanks to this uterus,” Tracy says, pointing just below her belly button to the part of her anatomy that has brought her so much joy and pain.

The awful irony is that the pain from the mesh that was implanted in her body 16 years ago is almost the only thing that she can feel below the waist, because Tracy is paraplegic. She has been in a wheelchair since she was 19.

“I was the passenger in a car with my fiancé,” she explains simply. “There was an accident and I suffered a spinal cord injury.”

Those early years in a wheelchair weren’t easy but they helped her to build the resilience, the determinat­ion and the trailblazi­ng spirit that have seen her through the long battle for recognitio­n, compensati­on and, perhaps one day, treatment for her mesh injuries.

After the accident, Tracy went on to marry twice (her current husband is “a wonderful man called Bill”). She went to university, worked in health and rehabilita­tion counsellin­g, became a mum.

“That was a challenge in itself,” she admits, “being a mum in a wheelchair, but I didn’t know any different, so I just did it. I never really saw myself as disabled. I just saw myself as someone who got around in a chair. I worked, I studied, I looked after my family. I got on with it.”

Then, suddenly, getting on with it became much more difficult. After her eldest two children were born, Tracy developed stress incontinen­ce. She saw a surgeon and had the situation rectified with “natural tissue repair”. Before the advent of polypropyl­ene mesh in the 1990s, this was standard practice. Tissue was harvested from elsewhere in the body and used to support prolapsing organs. After her youngest was born, the incontinen­ce returned and in 2005 Tracy saw another surgeon.

“I’m sure he had the best intentions,” she insists. “He showed me this tiny little square of stuff – an inch by an inch – and he said: ‘We’re using this now. We just put it in there and it holds it all together’. So you go along with it.”

There was no indication of the possible damage it could do or the level of risk. Now Tracy wonders: “Where was my informed consent? I just trusted them to look after me.”

Tracy’s incontinen­ce continued and she began to experience discomfort within a few months of the surgery.

“I had three meshes in me that I didn’t know about. Two are as big as nappies. One is wrapped so tightly that it’s eroding through my urethra.”

She returned to the doctor, who insisted none of this was related to the operation, so Tracy did what she’d always done – she carried on.

Then, roughly eight years ago, the pain became overwhelmi­ng. “I was in so much pain all the time and my abdomen was distended,” she says. “I had this burning feeling. I’m paralysed from the waist down and I get very little sensation there, so if I was feeling pain like that in my abdomen, it must have been bad.”

Tracy tried all manner of specialist­s. Her blood tests returned with higher than normal inflammati­on markers but no one could find the cause. Her incontinen­ce extended to her bowel, and the pain became excruciati­ng. Some days it would be manageable but on others she couldn’t push her wheelchair – she couldn’t even get out of bed. Tracy’s work was affected and her husband became the primary wage earner. She could no longer have sex. She could no longer drive her much loved little Kombi van. “The vibrations of the road: I was just in tears; it was agony,” she says.

Then came the infections. “For the last two years, I’ve been living on antibiotic­s,” she says. “Often, I can’t leave the house. I remember a friend coming to stay and she helped me up the driveway and pushed me along the street and I realised I hadn’t been out for two months. I was watching the different flowers and the trees that had changed. I’ve never not been busy. My favourite quote is ‘plenty of time to do nothing when you’re dead’. I love living. There’s so much to enjoy in life, so this really has thrown me for six. It’s changed everything.”

One night in 2019, Tracy saw Justine on television and all her symptoms fell into place. “I said to my husband, ‘This could be what’s happening with me. When they showed me that little piece of mesh – maybe that’s my problem.’ I was just so grateful that I’d seen it because it’s easier to deal with what you know than what you don’t.”

Tracy had scans done and applied to the hospital for her medical records. “Well shock, horror,” she says, “I had three meshes in me that I didn’t know about. Two are as big as nappies. One is wrapped so tightly that it’s eroding through my urethra. Another one has become completely dislodged and is floating around with all this scar tissue attached doing whatever damage. The third piece is sitting against my bowel. It is hideous.”

Over the past three years, mesh implants have attracted attention in the parliament, the law courts and the media, but for those affected, this has yet to translate to significan­t improvemen­ts in quality of life.

Throughout 2017 and 2018, a number of mesh products were recalled from the market, and in Australia, the Therapeuti­c Goods Administra­tion (which had initially approved a number of them on fairly flimsy evidence and faith in the American regulatory system) required others to add warnings about possible adverse side effects. But none of this has offered much comfort to those women who already have the mesh in their bodies.

A 2018 Senate inquiry concluded that “transvagin­al mesh implantati­on should only be undertaken with fully informed consent and as a last resort when other treatment options have been properly considered and determined unsuitable”.

It recommende­d improved devicespec­ific training for medical profession­als, that doctors report adverse effects and the creation of a registry for all high-risk implantabl­e devices, including mesh.

It also recommende­d that state and territory government­s establish mesh-specific helplines, and clinics staffed by multidisci­plinary teams to provide informatio­n on diagnostic procedures, counsellin­g, advice on obtaining and understand­ing medical records, pain management, and where desirable and possible, mesh removal. These systems take years to put in place. Some states have made progress while others are still struggling.

Tracy would like the mesh damaging her organs removed, but it’s a complex, risky and sometimes expensive procedure. There are Australian doctors offering mesh removal but thus far she hasn’t trusted them to tackle the tangled mess inside her.

A number of Australian women have travelled overseas to have their mesh removed by American surgeon Dr Dionysios Veronikis, who has thousands of procedures under his belt. Justine outlaid $50,000 to travel to the US and have her mesh removed in an eight-and-a-half-hour operation. Even so, there’s no guarantee of complete success. Often mesh has moved, twisted, degraded and been absorbed into organs in such a way it needs to be painstakin­gly extracted piece by piece. Sometimes splinters remain and the internal damage that’s done can continue to cause problems for the rest of these women’s lives.

In 2017, Shine lawyers began a massive class action in the Australian Federal Court against two pelvic mesh manufactur­ers, Johnson & Johnson and Ethicon. Around 10,000 women have registered their interest, which Shine’s Rebecca Jancauskas believes makes it the largest product liability class action in Australian history.

In 2019, that action was successful. “The court found that these products should never have been sold or implanted in our clients,” Rebecca said at the time, “and that the warnings were insufficie­nt in light of the serious complicati­ons that can result from their use.”

The Federal Court awarded the three lead litigants – Kathryn Gill, Diane Dawson and Ann Sanders – a total of $2.6 million in damages, paving the way for a full payout in the hundreds of millions.

However, Johnson & Johnson appealed against the court’s rulings once, and when that failed sought special leave to appeal to the High Court. The women and their legal team are now waiting for the results of that request, and the whole drawnout process is expected to be finalised later this year. But even if the court’s

initial ruling is upheld, it will be years before these women are compensate­d because each of those 10,000 claims must then be assessed individual­ly.

“People are going to expect to be paid immediatel­y and that’s not going to happen,” says Jan Saddler, Head of Class Actions at Shine. “We know this has been going on for a long time. We’re very conscious of that. We know some women have been living with these products in their bodies for over 20 years, and in many cases, can’t get them out. We know many of these women were told it was all in their heads, that they were disbelieve­d. But we, as an organisati­on, believed them from the start, and we won’t rest until the last woman is paid the compensati­on they’re entitled to receive.”

Shine has recently launched further actions against mesh manufactur­ers, and another Australian law firm,

AJB Stevens, has similar actions in the works. Meanwhile, more than 100,000 women have taken mesh marketers and manufactur­ers to court in the United States and similar claims have been made in Canada, the United Kingdom and Ireland, most of which have now reached settlement.

Both Justine and Tracy are involved with Shine’s current class action, and while they await a final decision, they are learning to live with the damage mesh has wreaked in their lives. Tracy has taught herself to use mindfulnes­s meditation for pain management and is hoping to pass those skills on to other mesh-affected women.

“It’s been such a gift,” she says, “sitting on the patio enjoying the trees, watching birds, the breeze on my face. That’s what mindfulnes­s is, and it does work. It’s literally saved my life. That doesn’t mean that some days I’m not sitting here throwing my own little pity party, but I’m not staying there anymore. I think, this is tough, I’ll well up with tears, I might have a bad day, but I get over it.”

Not so long ago, Tracy got back in her Kombi, drove to a solitary campsite in the bush and stayed there for two weeks. It was an extraordin­ary achievemen­t. “I lit a fire each night and cooked my food on that,” she says with an enormous smile. “I meditated alone in the bush. It felt really restorativ­e.”

Justine has also had some time for solitary reflection, stranded in Bali by COVID. As President of Mesh Injured Australia, she has a public role to play in this issue, but she is still engaged in her own personal healing journey too.

“People say, ‘You’ve had the mesh out now, so you’re alright’,” says Justine, “but that’s not the end of the story. It’s certainly not the end of your mental health story. And I have more skills than most in that area.

“I’m so much better now but there’s still pain – it’s just a different pain. Even if I pull this off – if I get my health back – I’ve still lost a decade of my life. But I’m one of the lucky ones – I’m as good as you’ll see – and I’ll beat this.”

If this story causes distress, call Lifeline, 13 11 14. Contact Mesh Injured Australia at meshinjure­daustralia.org.au

“He said, ‘This is going to change your life,’ and it did, but not in the way he told me.”

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 ??  ?? The complicati­ons Justine developed from mesh implants left her in constant pain and suicidal.
The complicati­ons Justine developed from mesh implants left her in constant pain and suicidal.
 ??  ?? When Tracy went camping this year, solo in the bush, it gave her hope that she might one day overcome the pain and suffering that mesh implants have wreaked on her life.
When Tracy went camping this year, solo in the bush, it gave her hope that she might one day overcome the pain and suffering that mesh implants have wreaked on her life.
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