My Mesh Mess

The best way I can tell you about what happened to me is to paste a letter I have written to the Minister of Health. It's detailed, and graphic, but it has to be so everyone knows the facts. I am asking for donations of approx $5000. This will cover installation of a new shower cubicle repairs to waste pipes, the removal of the defunct electric hot water system, and the fitting of gas hot water.

Dear Sir/Madam

I write to bring your attention to my extremely unjust and unfair position after a routine operation went horribly wrong on 1st July, 2012.

Since being disabled & failed by the surgeon who operated on me, I have been completely disadvantaged by ACC legislation.

I ask you to please, read this letter thoroughly, and advise me as to how I can continue to live a productive, meaningful life, and prepare for my future in the aftermath of this absolute debacle.

Before the operation, I had hopes and dreams. My husband and I had a plan. I was a productive, financially contributing and happy member of my family, with a bright outlook on my future, retirement, and life in general. I worked hard to improve my life and ensure my future would be comfortable. Now, I am left on the ‘scrap heap’, through no fault of my own, with completely inadequate compensation, acknowledgement or validation.

In mid 2011, I had to leave work due to a medical condition known as Andometrosis. My menstrual periods were heavy & painful, and compounded by fibroids in my uterus.

My job entailed looking after a man made wetlands where effluent was treated through a series of ponds, then pumped out onto a farm as fertiliser. The site I was working at was remote, and only had minimal sanitation available. There was a portable chemical toilet, and nowhere to dispose of my necessary sanitary items, or keep myself clean in a dignified way. The pain had become almost unmanageable, and as a result, I had to resign.

Previous to this position, I had been working in the earthmoving industry, operating bulldozers and dump trucks, and previous to that position, had worked in the roading industry. I have been self supporting most of my life, and have never had a problem finding work.

My doctor had referred me into the public system for a hysterectomy to rid me of the condition, and allow me to return to work, unimpeded by pain and constant bleeding.

Unfortunately, the waiting list was long and the time frame for getting the operation would leave us at a financial disadvantage. I made an appointment to see a specialist privately, in the hope he may expedite the operation, allowing me to return to work and not be solely dependent on my husband. This did not eventuate, and through a series of incidents, my husband and I ended up moving to Westport, to a better place of employment for him, that enabled us to meet our financial obligations.

Shortly after arriving on the West Coast, I contacted my specialist in Christchurch, told him we had moved again, and he wrote to the WCDHB asking for me to be seen there.

I was elated to receive an appointment shortly after. The surgeon could not perform my operation sooner rather than later as he was going back to France for his 3 months off, so passed me onto his colleague, who was available to perform the surgery in June, 2012.

The surgery date was made, and I looked forward to having my life back again.

An overseas surgeon contracted to the WCDHB performed the hysterectomy & inserted a surgical mesh device called a TVT-O to relieve my mild urinary incontinence. AT NO TIME was I alerted to the risks of surgical mesh, or advised of the many failures of it. Nor was I told that a similar procedure could be done using my own body tissue instead of a foreign implant.

Waking after surgery, in absolute agony and panic, I knew something was not ‘right’. I had an incomprehensible need to urinate, despite being catheterised. Screaming in pain, and crying out ‘what’s wrong with me’, I was ‘tut tutted’ by an elderly nurse, who told me it was ‘all in my head’. I had loss of sensation in my upper legs, and they felt cold, ‘asleep’ and weak.

Over the next few days I would be seen by several doctors, and none could find the source of the pain. I could not urinate properly, and had severe pain in my pelvic area.

I was discharged from Grey Hospital with some very hefty pain killers, still not happy with my condition.

I returned to Westport, unable to empty my bladder completely, and had several admissions to Buller Hospital, and visits to my GP, in pain, and unable to pass urine. Appointments were made for me to see other surgeons, who concluded the TVT-O had been inserted too tightly and needed to be ‘cut’ to release my bladder. The TVT-O could also be felt protruding from my vaginal wall and as one doctor described it, ’was like a tight guitar string’. None of those surgeons wanted to attempt releasing the TVT-O, as they did not use the device themselves, and did not consider themselves qualified to do so.

I had to wait for the French surgeon to come back from his sabbatical in France, to release it himself.

For months, I suffered through agony, the inability to urinate, and bladder infections.

Upon his return from France, the surgeon made an appointment to ‘excise’ the TVT-O during day surgery in October 2012.

Immediately after the TVT-O was ‘cut‘, I urinated freely, a little TOO freely. I had no control over my pelvic floor muscles, and became completely incontinent of urine.

I had gone from a wee drop when I coughed (pre hysterectomy) to not voiding properly at all,(post hysterectomy) then to complete incontinence. I also had a constant need to defecate, my bowel always felt full, no matter how many times I excreted faeces. At times, I had to insert my fingers into my vagina to ’push back’ the bulge to aid faecal waste to travel down to my anus. I was depressed, bewildered and frightened. I did not want continual visits to surgeons and doctors, and I had very little faith in their ability, and tried to handle ‘my lot’ as best I could. I attempted to resume a social life, but after urinating myself at a friends birthday dinner, confined myself to home to save embarrassment. I began to manage my fluid intake, almost to a point of dehydration, so I could cope with everyday life.

After the recommended time, my husband and I attempted to resume our sex life.

This was not only excruciating, but impossible. The TVT-O had eroded through my vaginal wall and felt like ‘barbed wire’. I had developed a huge bulge in the back wall of my vagina. This was full of faeces, the reason I always felt the need to defecate. I did not have this ’bulge’ prior to the excising of the TVT-O. During this time, any and every attempt to return to some semblance of ‘normality’ was foiled by the failings of the surgeon and the device.

At this time, and after lengthy discussion with my husband, we decided that we needed to move back to Canterbury to have my medical issues resolved. I had absolutely no faith in the services closest to me, and was petrified at the thought of them being my only option.

There was no other choice but to drag my family away from a happy, and prosperous place, to meet my medical needs. This caused even more financial strain on my family.

On our return to Canterbury, I made an appointment with my old GP, and asked him to help me make a claim to ACC for my medical injury.

I then made an appointment with my original specialist, at my own expense, to try and decipher the mess that was inside of me and try to find a way to rectify it.

My original specialist was my best option. I felt he would know what was ‘wrong’ as he had seen me pre hysterectomy and was aware of my physical condition before I was injured.

He described the failure of the TVT-O, and what he felt had happened when the TVT-O was excised. He told me that when the TVT-O had been inserted too tightly, it had, in effect, imbedded itself into my tissue and ‘held everything up’. When the TVT-O had to be excised, subsequently, everything ‘fell down’ again.

I cried. I knew I would need another operation to resolve the mess I was in, and was full of apprehension.

He made an appointment for me to see a urologist for ‘urodynamics’ to ascertain the severity of the injury.

It was decided that I needed a rectus facial sling to try and hold my pelvic floor up again, and the surgical mesh device had to be removed as much as possible.

My vaginal walls also needed repair, along with the vault.

This was major surgery. I was absolutely frightened, very uncertain, and completely loathed to have to put my faith into a profession that had maimed me so severely.

Remedial surgery was scheduled for mid November, 2013.

At this time, ACC had identified and agreed to cover three medical injuries.

Nerve damage to my groin, causing pain and loss of sensation in my thighs, a ‘closed’ bladder injury, and cover for my inability resume ‘normal’ sexual activity. ACC also acknowledged and accepted that the TVT-O had eroded into my vaginal walls.

A rectus facia sling was made to hold up by pelvic floor, repairs to my vaginal walls, vault and excision of as much of the TVT-O as possible.

I woke from the remedial operation, in pain, groggy, but very relieved it was ‘all over’.

One of my surgeons came to see me and told me they had excised as much of the TVT-O as possible. At my request, a piece of the TVT-O had been ‘saved’, so I could see what it looked like. It was hideous. My bloodied flesh was imbedded into it. It looked like rotten meat, entwined in a pinkish string. (Picture uploaded)

The day after surgery, my catheter was removed, and I tried to urinate naturally. This was an apprehensive time, as my bladder was still not emptying properly, and due to the seriousness of the operation, I could not tell if there was an improvement or not. I hoped that with time, there would be, and when I had healed, life would return to normal.

This was not to be.

Husband collected me 4 days after surgery, and attempted to take me home. I was still not voiding of urine properly, and the trip from Christchurch to Ashburton took almost two hours. I had to stop at every available toilet to try and urinate, releasing about 30 mls of urine each time.. The pain was excruciating. I was unsure whether this was due to the car ride, infection or post operative pain.

After arriving at home, I went to bed. I slept for a few hours and woke in agony. I tried to urinate, to no avail. Husband drove me to Ashburton Hospital, where a catheter was inserted and I voided my bladder of over a litre of urine.

It was decided that the catheter should be left in for a period of two weeks, until I had recuperated/healed enough to try urinating again.

I had several problems with the catheter. It irritated me, caused pain, and I had to have the District Nurses come several times to re insert/replace the catheter.

Approximately one month after surgery, the catheter was removed for good. At this time I had seen the urology nurse on two occasions, who had advised me to urinate standing up. This was to become the only way I could effectively empty my bladder. I was advised that I could go into urinary retention at any time and needed to learn to self catheterise should this situation arise.

To this day, I cannot urinate sitting down. I have to disrobe from the waist down, and straddle the pan to completely empty my bladder. I have no real sensation that my bladder is full, and am only alerted to the need to urinate by pain.

I have never, and never will, have the same level of sensation in my legs again. I cannot sit or stand for more than 15 mins, and do not notice scratches/cuts/grazes to my thighs as a result. Driving is limited. I manage to drive myself to town for doctor’s appointments, grocery shopping, and other domestic chores. After sitting for longer than 15 mins, I have trouble standing, my groin ‘locks up’, and I am unable to straighten up. Walking is wobbly until the pain in my groin subsides. I suffer from chronic pain in my groin and thighs.

My life at present is unmanageable. I cannot help or assist my family in a financial capacity. This has affected not only my mental health, but my relationship with my husband. I am completely dependent on him for my basic human needs and am incapable of contributing to our future. The pressure of my financial dependency and the unfairness of our situation, has, and continues to, take its toll. When we married, (2010) I was working, had savings, and together we had a bright and comfortable future planned. Now he has to work every waking moment to keep us afloat. I am wracked with guilt, feel completely useless, and ‘on the scrap heap’.

In June 2014, I applied for, and was successful in getting a job as a cleaner/tea lady at our local Talley’s Plant. This was light work, and something I felt I was capable of doing. After two shifts I had no option but to resign. The pain in my legs was unbearable.

This injury has taken from me everything I was, everything I dreamed of being, doing and becoming.

It has taken from me my independence, my ability to financially contribute to my marriage and my future. It has also robbed my husband of any pleasures he may have afforded before I became totally dependent on his pay cheque.

My every waking moment is spent worrying about what will become of me, what this is doing to my family.

I still have 20 years until retirement. I can no longer contribute to savings for my twilight years, and it is completely unfair to expect my husband to struggle to keep me.

I am currently seeking treatment for the deterioration mental health via the public system. I asked ACC for help with my psychological condition and was referred to my GP and the public system for help as ACC have so few psychologists under contract it would take months to see an approved physician. ACC now tell me I will have to repeat the whole process when they can find an approved psychologist to ‘deal’ with me. The psychologist I am currently seeing under the public system has been very helpful, and I am thankful to have had the public system as back up.

.This happened to me. It is black and white. A doctor maimed me. The surgical device failed, both of which have had a major impact on my physical life, and my mental health.

It’s now been three years since this disastrous operation. Three years of dealing with the consequences, the pain, the restrictions, the empty pantry, the no holidays, the money juggling, the moving, the emotional hurt, and feeling of inadequacy, uselessness, and no prospect of any improvement. I fear so much for my future that at times I feel going to sleep and staying asleep would not only end my pain, but free my husband from the incomprehensible and unjust responsibility that he feels. He didn’t do this to me, yet he has to financially sustain me.

When I consented to the hysterectomy, I was filled with joy. Being rid of my defunct and problematic uterus would give me the freedom to live without pain, play sport again, take part fully in activities that would improve and ensure my future.

I did not, for one second, believe that in consenting to routine surgery I would lose my human right to independence, to live my life both jointly and severally alongside my husband, or land me squarely in the lap of completely inadequate legislation.

I have been completely devalued.

I am a victim not only of medical misadventure, but legislation that is completely discriminatory.

My situation is not just about the pain and suffering inflicted on me. It’s about my loss of independence, dignity, prospects and future, and my decaying health. It’s about heartbreak and grief, not only for the person I was, but for the hardship and dependency inflicted on my spouse. There is no enjoyment in my life anymore. I am a piece of junk, broken, defunct and left to scrape through life as best I can.

It’s wrong. It’s criminal, and it has completely devastated me.

Please find below links to media reports about my case.

During this whole situation I did not sit down and do nothing.

For 2 years, I volunteered for New Zealand Nuclear Test Veteran's Assn, researching 551 RNZN Sailors that were sent to Christmas Island Nuclear Tests, and organised awareness campaigns for them. Last year, I propagated and gave away 6000 bee friendly plants to raise awareness of the plight that bees face and their increasing mortality. Both of these projects helped me to keep some form of sanity and a feeling of worthiness.

It's very hard to go from being someone who was full of life, to someone who has no prospects.

http://www.odt.co.nz/news/national/278944/patient-injured-grey-hospital

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11150175

http://www.guardianonline.co.nz/news/jens-a-lady-on-a-mission/