Surviving Hernia Mesh

It was September 22nd, 2016 when I underwent an inguinal hernia repair at a Brisbane public hospital.

I remember laying in the hospital bed in pretty severe pain waiting to go for this surgery that was suppose to be a quick one day surgery.

I didn’t know exactly what was being done until the surgeon approached me and told me that he will be using a piece of mesh, and placing it over where the hernia was. I had recently had a gall bladder removal, so when he started telling me the risks, they all sounded familiar, and then he mentioned long term chronic pain as being a risk of the procedure, and he must have seen the look on my face as I paused, and then he reassured me that the risks were very low, less than 1%, and I joked with him that you’d have to be very unlucky for that to happen then, and brushed it off after he told me that it is the latest mesh on the market, it is the Gold Standard in hernia repairs, and there is very little chance of the hernia reoccurring, and basically sold the mesh to me like it was a new car.

Little did I know that by signing that consent on the spiel that the surgeon gave me, and believing that I was in safe hands, and that my hernia would be fixed, that when I woke, that the next 4 yours of my life would be what I describe as being “Legally Medically Tortured”, and I was led to believe that I was unlucky enough to be in that 1%, and learning later that the Parietex Composite mesh had never had any human trials, and is still being mass marketed around the world to this day.

From the moment I opened my eyes after the surgery, my right hand went straight for a feel of where I had been operated on, and something just wasn’t feeling right, like there was a weight there, under the skin in my lower left abdomen.

The surgery was said to have been successful, and the pain I had, I was assuming was from the surgery, and the doctors said that the pain should settle as I heal., and it is really difficult to describe how it feels unless you have experienced it, and it might be different for everyone, but for me, it was like having a piece of pipe or something similar, pushing from the inside out, against my body tissue and skin. I later learnt that it was a tack.

The pain itself, it was very different, and there is nothing I can compare it to, because it is not like having a broken arm, twisted ankle, headache, kicking a toe, or being sliced, or even recovering from surgery can’t describe it. The pain was kind of like a Chinese burn, but from the inside, and felt continuously bruised, like someone giving a dead arm, but in my lower left stomach, which is where I was holding all of the time.

Weeks turned into months, I couldn’t walk properly, I couldn’t bend, turn my body, I couldn’t even wash dishes, because the movements were just too painful, and if I did try, I would have increased pain for about a week. I was waking up sick, I lost my appetite, and I was also still feeling this weird burning, kind of dull stabbing pain which seemed to ease, especially when I held it up while walking, it was like I was holding it in place.

From 22nd of September 2016, when I had the initial surgery to 18th of May 2017, I had numerous tests, scans, and 11 visits to the Emergency department via ambulance, and a lot of the time having to find my own way home. I walked out plenty of times and having to find my own way home because all I kept getting from the doctors was sorry, there is nothing they can do as nothing was ever showing up abnormal on their tests or scans, so I had no idea what was wrong with me at that point, but I was beginning to believe that it had to be the mesh.

On the 18th of May, 2017, a 2nd procedure, a diagnostic laparoscopy was performed, because the surgeons believed that the tack that was used to hold the mesh in place was causing the pain that I was experiencing, however no tack was observed, so in other words, the surgeon couldn’t find the tack, but had observed adhesions, which they believed could be a source of the pain.

By the time that procedure occurred, I had presented 11 times to emergency, and I was on extremely heavy duty pain medications such as Endone, Targin, Morphine patches and strong anti depressants, and my healing from this surgery is pretty foggy, and I thought the pain may had gone, and I only had the pain from the surgery, but it must’ve been just numb, because the pain returned, and when I mentioned it to my mother, who had become my carer told me I have been holding it, moaning and groaning in pain the whole time since the surgery, so maybe the amount of medications I was on was affecting even what I remember. It wasn’t until the post operative appointment that I remember acknowledging that it was the same pain, because up til then, I was bedridden, resting, and recovering from the surgery, so I didn’t get much exercise.

At the post op appointment I told the doctor I saw that I thought the pain had gone but it hadn’t, and he left the room, then returned a couple of minutes later telling me that they were sorry, but there was nothing more that they could do for me surgically, and said that they would be recommending I be referred to the Persistent Pain Clinic to manage my pain.

Up to this point, I believed that I was the only person in Australia going through this. I had done some googling, and I found others in other countries were going through the same from hernia repairs, and then one night I was watching a tv show called The Project, and on it were these people talking about their horrible experiences with hernia mesh, and one guy named Marc, and everything he was saying was exactly the same symptoms I was experiencing, and he had also started a support group on Facebook, so I wrote down the link, and I jumped straight on and joined his group, and became one of the main participants as I shared my story every day, I shared what I was feeling, what I was learning as I dug deeper into mesh, and supporting others that were going through the same thing I was, and to see how many people are actually affected, it was just shocking. I was both relieved, and saddened at the same time to learn that I wasn’t the only one suffering this horrible fate from a piece of plastic, and when I learnt through my medical records I had a Parietex Composite mesh, I also learnt others in the group including Marc, had the Parietex mesh too

The Emergency room was becoming like my 2nd home, I felt like a cash cow for the medical system, with me being in hospital nearly every weekend. I believe I have a strong pain tolerance, but what I was experiencing was beyond anything anyone could imagine... The amount of times I had to refrain from getting violent towards staff, and hobbering out because I was sick of being in so much pain, and it was like nobody wanted to help me, like my case was too hard.

For nearly a year I avoided the hospitals, and I was just coping, and I did hit rock bottom not far from here. On 28/8/2018 I was clinically diagnosed with Major Depressive Disorder of a Moderate severity, with anxious distress. I was basically bedridden, the government expected me to look for work when I couldn’t even move most days, I was struggling to get disability support because chronic pain wasn’t recognised as a disability, I was dependant on my family for everything, when I was use to being independent before this hernia repair, and now I had trouble picking up a piece of paper if I dropped it. So I wasn’t in a good place in my mind, and with the surgeon telling me earlier that there was nothing more that could be done surgically, and get use to living with the pain, I wasn’t sure if I could make it, and then Centrelink told me that I needed to go back to the hospital and get it in writing that there was nothing further that could be done, and then I should be eligible for disability support, but when I met with the surgeon, he told me that he’d been speaking with his colleagues and they believe that it is the tack causing the pain, and that they wanted to try removing it again.... I said that they couldn’t find it last time, but he said they had another idea on how to find the tack, and I asked if he is going to remove the tack, why doesn’t he just remove the mesh, and he said there is nothing wrong with the mesh, but he strongly believed that removing the tack is my only hope of relief, or get the letter saying nothing more could be done, so I could get disability support approved, and I obviously chose an opportunity for relief.

The tack removal surgery was done on 11th of March 2019. It didn’t go so well either. The healing was great, not lots of scarring, but now I had an itchy sensation like ants crawling inside me, on top of where the pain. I returned as usual for the post op appointment, where I informed them of the new crawling ant feeling, and still had the pain, and he apologised saying that he had hoped that the tack removal worked, but now there is nothing more that could be done surgically, and I asked, why doesn’t he just remove the mesh, because the mesh is causing the pain, and he told me that there was nothing wrong with the mesh, and that no surgeon would remove it for me, so I might as well get use to living with the pain.

I have no idea how long it was before I was able to see the Pain Specialists, but it took forever and multiple complaints to my doctor, who was also getting frustrated that I was being left in this pain. I got to the point that I didn’t want to be here anymore, because the the whole experience was so draining, and I felt like I was existing so the pain could exist.

When I did get to the pain clinic, they prescribed me Physeptone, which is a Methadone tablet for the treatment of long term chronic pain, and which I believe it also led to me being refused medical treatment twice by the same emergency surgeon and being treated like a heroin addict after a drugs. This mistreatment also added to my trauma, and I think I might have PTSD from having the threat of being arrested for refusing to leave hospital grounds, while I was being discharged while I was still in the same pain I presented with.

After being discharged, and given up on, I fell into a pretty deep depression, I spent days in my room, and then it took my brother to come and ask me what am I doing, it looks like I am just sitting there waiting to die, and being honest, I was so lost, I didn’t know what I was going to do, and I learnt I could get the mesh removed, but it would cost about $13,000, and I didn’t have that, and that made me feel worthless, and felt that the hospital did this to me, they should be paying for this removal, and I went back to my doctor and asked him for a referral to a different hospital, and different surgical team for mesh removal. I have a friend who was a surgeons assistant, and she told me that they cannot keep doing this to me, I have a right to a quality of life, and by leaving the mesh in there, they were refusing me of that right, so she coached me on what to say to the next surgeon that had so that no matter what, he won’t have any choice but to respect my request.

During all this, I have met wonderful people like Justine who is President and founder of Mesh Injured Australia and who also led me to consulting with one of Australia’s top groin pain specialists and the initial consult was a teleconsult, and he had ordered some tests for me, and a nerve injection to rule out nerve damage. I met with the public surgeon that I was referred to, and I said everything right, and although he tried avoiding surgery by contacting the pain clinic while I’m there, I told him that they cannot help me, and I won’t last another year with the mesh in me. I had lost over 30kg’s, I looked like a cancer patient knocking on deaths door. The words I told the surgeon was the facts... I’d had an exploratory surgery, a tack removal, which is what made the symptoms heaps worse, and the nerve injection which gave no relief, and I am well aware of the risks of more pain, but I am still willing to sign the consent because with the mesh in me, I have no quality of life. He agreed to do the removal, I signed the consent, went to the waiting room, then he approached me a 2nd time and tried convincing me not to go ahead with the surgery, because he doesn’t believe he could fix what was wrong with me, and might make me worse. I told him I couldn’t get much worse, and I convinced him that I wanted the surgery, even against his advice.

While waiting on that surgery, my daughter drove me to Sydney to see the specialist. He did a proper full examination on me, and told me that the mesh needed to come out, so I had confusion why the surgeons in my home state were telling me there was nothing wrong with the mesh, and get use to living with the pain, to a specialist saying it needs to come out.

I had the mesh removed in December 2019, and the first 2 weeks were horrible, but from the moment I woke from the surgery, I just knew that the mesh gone, and I feel blessed, and so grateful and proud of myself for never giving up, because I know I was dying, and nobody was helping me, and I had to stand up and fight to save my own life.

It is about 18 months post removal, and it has been a rollercoaster of a recovery.

The first 2 weeks, the pain was torturous, even the slightest cough, sneeze, hiccup, would hurt like crazy, nut the 3rd week I was walking around, and I felt a lot better, like the surgery had worked, then about a month after the removal, I was parked, with my seatbelt on, and a car had reversed out of a driveway, and straight into me, and that put me back into my wheelie walker for 9 months before I felt comfortable to walk through shops without it. I was 2 months out of the walker again when I got rear ended on the highway, and that set everything off again, so instead of the average of 2 years to heal from mesh removal, it is going to take me a bit longer I think.

Well with everything I have been through and with what I have learnt about mesh, and how mesh is approved, I have started lobbying with politicians that are in positions where they are able to help me prevent the same thing happening to others.

I started writing to my local Member of Parliament representatives, and I received a phone call back saying that the health minister should be made aware of this, and that they were passing it to someone. The following day I received a phone call from a representative of a Federal Senator, and he told me that he read my story and couldn’t believe what he had read, and that he wanted to help me make things right.

With what I went through, I discovered flaws in our health care system, that seems to be the same all over the world as for how patients with hernia mesh complications, our symptoms are being ignored, and we are being left to suffer in silence.

First the world heard about all the complications that hundreds of thousands of women were suffering from pelvic mesh complications, and they were ignored for years, and it ends up being those who have been injured that stand up and advocate for so the same thing doesn’t continue happening to others.

If I hadn’t been so traumatised by what I went through, with nearly 30 trips to the emergency department over 3.5 years, and nothing ever coming up on the scans or blood tests, x-ray, ultrasound or mri, at one stage I was told by a doctor that he believed that I had a very rare condition of chronic pain with no obvious cause.

Well all this has led me to becoming a member of my local Labor Party branch where I happen to be part of the Queensland Justice Minister and Attorney General, and who better than these people to help me with creating the changes we need.

People want to know why they should follow me, well it is like this... After my experience and nearly dying, I am now lobbying for all mesh injured to change the structure of both our health system, and how the TGA approves high risk implantable medical devices.

We wrongly assume that when we go for surgery, that if it is going into our bodies, that the medical device being used has undergone proper clinical trials to prove it is safe and does what it is described to do, and to be well informed of all the risks associated with using mesh in the human body.

What I have learnt is that mesh is a multi trillion dollar business, and in the US, hernia mesh is categorised as a low risk implantable device, which means that there are no human or clinical trials done with these newer hernia meshes. Mainly because manufacturers are taking advantage of an approval process called 510k, which allows manufacturers to design and produce any product similar to something already approved and introduce to the global market without ever being tested. When the FDA receives enough complaints about a product, they order the product to undergo clinical trials, and then the manufacturer voluntarily withdraws that product, and re-introduces another in it’s place, and when the FDA receives enough data to order clinical trials on the newer product, that again is withdrawn voluntarily, and the circle continues, while 100’s of 1,000’s of people are being injured from these medical devices, the companies are raking in billions of dollars. One company went to court and paid out 300 million dollars in compensation, and that might seem a lot, but the revenue from that one mesh product was 600 Billion dollars, and that is just one device.

The EU has reclassified hernia mesh to be a high risk device, and there they introduced laws that hernia mesh manufacturers cannot sell their mesh unless they can show human trials. In Australia, hernia mesh was also re-classified a high risk device, but unfortunately we are still using mesh that has never been tested on humans, which is why I believe there are so many people having adverse effects, mainly constant, debilitating chronic groin pain.

Until the FDA toughens their testing of implantable medical devices, especially with medical devices that are meant to be permanent implants, the amount of injuries and deaths are going to continue to rise. All implantable medical devices in my opinion, should undergo clinical and human trials before companies flood the medical industry with them.

From the 2018 Senate inquiry into pelvic mesh, support clinics were recommended and set up for women around Australia with pelvic mesh complications. I am now petitioning for those support clinics to be extended to include hernia mesh and other mesh injured. I am also petitioning for a register to be created for hernia mesh in Australia, and I will be asking that all hernia mesh have human trials before being sold in Australian hospitals, and both those petitions will be presented to state and federal parliaments in the coming weeks

Our health care is important, and so is our quality of life, and until you have lost everything, you don’t realise how much we actually take for granted, even walking, we take for granted, but now I have some quality of life back, I want to make a difference, and I cannot turn my back on this. If you join any hernia mesh support groups, you’ll be both saddened and angry that this is allowed to happen, and it’s not like nobody knows it is happening, the documentary on Netflix called The Bleeding Edge is an example of medical devices passed through the 510k loophole have turned out, because it isn’t just mesh, it’s hip and knee replacements and many other devices that we assume is safe and has been fully tested, and even our health professionals, most are unaware of this loophole, and believe that if it has FDA approval, that it is safe to use, and I am sure if they knew that the device they are using is part of pending class actions, or that it’s never had clinical testing, a good doctor would put down his tools.

This has gone on too long, and our numbers have grown immensely, and our stories and our voices will be heard, and I pray those CEO’s responsible for putting these products on the market knowing that people were going to be injured by them. That is a deliberate assault on the people, all for profit, not to save lives, and we need to come together to stop this happening in your country and state. I am only one person, and I still live with chronic pain, and depend on my walker to mobilise, and on disability, but I am doing my best to create Mesh Awareness, as well as prevent others suffering something so horrible.

Looking back, I believe now that the crawling ant feeling was actually the mesh slowly separating from my body tissue, as the mesh is designed so that our body tissue grows through it, but removing the tack, it obviously triggered something, and one of the last visits to Emergency before the removal, I was in the most pain I had been in, and this surgeon I believe was judging me because I was on methadone, and my records say that I was on the methadone program.

I was in that much pain for several hours, that I cried myself dry. It took 4 lots of fentanyl to get the pain under control, and a nurse beside me tapping my hand telling me everything will be okay, and that was until the surgeon stuck his head in and said he was discharging me straight after the other doctor had just me that he believed my medication wasn’t working anymore and I believed that should have made me a priority because there was nothing stronger than the methadone tablets, and being kicked out when all I wanted was help was torturous, and I had even told the surgeon that by discharging me, he is torturing me, because that meant when the fentanyl wore off, I would be in that same pain again, and he said, well that’s all the medication I am getting from them, so I might as well pack my stuff and go, and I did, because I didn’t want to get arrested for trying to get medical help, and I returned home, bedridden in that same intense pain until I had the removal. Nobody should be treated this way. I was made to feel like my pains were wasting their time, like I didn’t have better things I’d rather do than sit in hospital, and the thing that sucked, is that they did this to me and made me feel like it was my fault I was in so much pain, or like it must be in my head, because nothing showed on any tests or scans, so I must be lying.

Mesh Injured men and women around the world need your support, and for changes to happen, we need people to read and share our stories.

I didn’t enter just to win this competition, but it would be great to know that it caught people’s attention and awareness was spread, and someone decided to do more research before trusting that the surgeons know all about the device they are using.

This is a real life event, and it changed me forever, and it isn’t just me that is bedridden, there are too many people in the position I was, and now I have got some quality of life back, I want to make it count, and Mesh Awareness is key for changes and saving lives.