A Perth woman has described the "total destruction" of her life as a mesh implant, intended to treat post-childbirth prolapse, slowly disintegrates inside her.
Women from across Australia are emerging to tell their stories as a Senate inquiry gathers evidence into what Senator Derryn Hinch described as "one of the greatest medical scandals and abuses of mothers in Australia's history".
Stella Channing suffered from pelvic organ prolapse in her late forties after having three children. A surgeon recommended surgery involving a 'small amount of tape' between her rectum and vagina, requiring an overnight stay in hospital and a few weeks off her full-time retail job.
She woke with two bodies of mesh - Johnson & Johnson Ethicon Prolift, now removed from sale - between her rectum and vagina. She was in hospital for eight days.
One week after discharge, the mesh had begun to erode. She began experiencing bleeding, and pain in her buttocks and legs. Her surgeon could not recommend any solution.
She could not go back to work for three months and when she did, she could not stay on her feet. Her employers created a position as a customer service officer, so she could sit on a cushion in the office.
By 14 months after surgery, after dipping for a time, the pain returned full force, in her buttocks, rectum, vagina and thighs. She began experiencing transient ischaemic attacks, or 'mini strokes'.
She was forced to drop work to part-time, then two days a week. She had to leave her job despite her employers' efforts to accommodate her, being unable now to sit down on an office chair.
The mesh had continued to erode and shrink, she said, shrinking her vagina and hardening her rectum, trapping and scarring the pudendal nerves running through the rectum and legs, damaging the flesh and muscles throughout the pelvis.
It was now close to piercing her rectal wall and causing blood poisoning.
She described her feelings in words that echoed those of other mesh-injured women now going public.
"The nerve pain is like petrol burning inside me," she said.
"The raw pain of the erosion is like broken glass in your rectum and vagina. As we speak I am losing blood from my rectum and vagina and the pain is unbearable.
"This has totally destroyed my life.
"It sounds dramatic - and I can only say that it is."
Ms Channing cannot walk around the supermarket without a cane and must lie almost continuously on her side in a hammock-like bed. She cannot pick up her grandchildren, or even play with them.
The memory of her past life mocks the present one. As well as working towards a management position in retail, Ms Channing had been doing certificate courses to qualify as a personal trainer.
"I was a gym junkie. I would exercise every day. I wouldn't even sit till to watch a movie. I was active, busy and social. I was someone who looked after my appearance," she said.
"All that has been stolen. I am financially ruined. I lie down all day. I am isolated. Sometimes I cannot shower because the pain flare will be so great it will take days to recover."
Some days, she tried to pick herself up and give herself a talking to. She would get up, do her hair, put makeup on and go to see her grandchildren.
Afterwards she would be rewarded with pain so unbearable it was like a punishment for her effort.
Ms Channing's older sons and grandchildren felt her absence from their lives keenly, she said, as did her ageing mother, who she couldn't fly to Adelaide to visit.
But she worried most about her youngest child, her 23-year-old daughter who still lives with her.
She brought her daughter up prizing health. The 10-year-old would amuse herself with colouring-in books at the gym waiting for her mother to finish a workout. As she grew older, they began to go together.
Now, her daughter does these rituals alone.
"She feels the burden of looking after me," Ms Channing said.
"The other day she got back from a walk and just said, 'Mum, we should be doing these things together'. I can't go for walks with her, or to the gym, even out to breakfast. So she is missing out on having a mother who is involved in her life.
"I become depressed, hopeless, knowing I must live with this for the rest of my life.
"Some days, I wake up and don't know why I have bothered waking up.
"Sometimes I think it would be better if I just didn't."
The meshes are not designed with removal in mind, so removal is a complex business. No Australian surgeon was trained to do it, Ms Channing said.
Her previous urogynaecologist suggested "having a dig around" and attempting partial removal but it would be too dangerous to attempt to remove the 'arms' of the mesh in her buttocks or groin. It would still be life-threatening surgery and would mean removing her rectum, leaving her with a colostomy.
"It doesn't inspire confidence. I know partial removals make it worse - more scar tissue, more nerve damage. Fortunately I have done my research of women worldwide, because I have been going through this for long enough and I know what will make it worse," Ms Channing said.
"I know you wait for full removal."
One surgeon in America, a country flooded with lawsuits over mesh injuries, has performed thousands of removals, which cannot return women to original health but can at least halt the damage.
But Ms Channing, unable to sit on a plane or buy a ticket on a disability pension, has no hope of going overseas. She can only hope the surgeon will one day travel to Australia as the scandal here grows.
She said she might have already taken her own life were it not for the support of her GP, pain psychologist and occupational therapist, "three strong women" who fight her corner.
But no medical specialist is overseeing her case since the urogynaecologist's offer to "dig around".
Ms Channing is one of more than 200 women to report a mesh-related "adverse event" to the Therapeutic Goods Administration.
The TGA approved use of pelvic mesh in Australia in 2005 following 2002's USA approvals, without clinical trials. It later conceded the approval was "not mature" and lacked rigour.
In 2011 the USA Food and Drug Administration announced serious complications were "not rare" and that the overall increase in serious adverse event reports was cause for concern.
In 2012 Johnson and Johnson notified all regulators they would cease supply globally of their urogynaecological meshes.
But other meshes are still being used.
They are now the subject of a federal Senate Inquiry, whose title "Number of women in Australia who have had transvaginal mesh implants and related matters" highlights the lack of information on how many Australian women have the mesh and how many have complications, thanks to inadequate records of mesh use.
The Project's special report said state health complaint agencies refused to disclose the number of complaints received.
A support group for mesh-injured women, begun with 27 members in 2014, now has nearly 700.
But women experiencing pain and mesh erosion are not told by doctors of this growing community.
"So many women are told to get test after test and don't know the mesh is causing their hip problem, their bleeding, their other complaints," Ms Channing said.
"I don't even want to go and see a new gynaecologist or colorectal surgeon because I just feel it's downplayed, they say you are the only one."
One Perth mother, who preferred not to be named, had vaginal mesh inserted in 2016 to treat prolapse but has since experienced further vaginal and rectal prolapses, severe bowel problems and vaginal bleeding.
She had very recent surgery to remove an eroding portion of mesh that had burrowed through the wall of her vagina, and the bleeding has stopped, but doctors failed to tell her there was a current Senate inquiry she could give evidence to, or that she could report an adverse event to the TGA.
"I have been struggling to try to get help. I have obviously Googled it and I am aware of the problems in America and I saw also the people in Australia," she said.
"But no one had told me about this. It has always been minimised.
"It's more like 'everything is perfect and good.'
"I was told it was no problems, a stitch hadn't healed, that it was the tiniest bit of mesh coming through and they were pleased with the results.
"I just don't know. You don't have any choice but to trust them to sort out these problems that have been extremely disabling for me. It's quite a horrible area to have a problem in."
Health consumers councils across Australia have united to help host a Facebook Page to ensure women's voices are at the heart of their Senate inquiry submission.
They are running an anonymous survey for women and their families to provide feedback to inform the submission.
In just three weeks 1250 women have completed the survey. Nearly 58 per cent say they have been adversely impacted, citing problems such as chronic incontinence, abdominal pain and pain during intercourse.
One-quarter said the impact had led to a breakdown of their marriage or personal relationships.
???Of those who sought remedial medical assistance, slightly over 10 per cent reported this made things better; 40 reported no difference and 11 per cent that it made matters worse.
The remaining 39 per cent were told that nothing could be done for them.
The page will be active until the submissions deadline of May 31.
