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Donna's story.
In 2005 I had a huge bulging (prolapse) of the vagina, I knew what it was as I'd had the same during the pregnancy of my first child Staci back in 1986.
 
I was working and living in Christchurch at the time (2005).  I went and seen my GP about this who referred me through the public system to see a Gynaecologist as I don't have medical insurance.
 
Having received the letter stating the wait time was nine months before I would be seen by a gynaecologist at Chch Womens I then decided to pay myself and have a private consult with a urogynaecologist that did surgery at Chch Womens Hospital.
 
I went and saw Dr Sharon English. From the examination it was confirmed I had a cystocele, rectocele,genuine sphincter incompetence and vault prolapse. She said it would take two surgeons to fix the problems I had.  The other surgeon would be Dr Dianne Poad who worked solely for Canterbury District Health Board at that time.
 
I was then put on the waiting list at Chch Womens Hospital.
 
I was called up for surgery in July 2005. The surgery being Rectus sheath sling colposuspension abdominal sacral colpopexy with gynaecare mesh.
 
Looking back now I was pretty naive about it all. I'd had a prolapse before and having had it all fixed up in 1995 with a hysterectomy I guessed these two surgeons knew what they were doing. Having spoken with both Sharon English and Dianne Poad at pre admission they talked a lot of medical jargon and talked briefly about "mesh". I recall Dianne Poad saying they would make me a "new woman, no questions asked”. After all, they reassured me, they dealt with women having these same problems as me day in and day out.
 
Surgery went ahead and I was in hospital for 5 days. 
 
I left hospital having to self catheterise as I couldn't void (pee) at all.  I also left with a date for a six week check up.
 
My family was in the process of shifting to the North Island at this time.  My man had already left Christchurch and was in the North Island. Staci had just had my first grandchild and had moved out of home.  My son Hamish was still at home and attending High School. 
I had no energy or interest in packing up house to shift.  A dear friend took my youngest daughter Sarah (then aged 12) under her wing for me so I could hurry up and get better.  During this time Sarah called me from my friends house early one morning (7amish) saying she was sick.  Although not meant to be driving the ‘mother instinct’ kicked in and I went and picked her up and brought her home to bed with Mum.
 
That afternoon with just Sarah and I at home while attempting to change the sheets on the bed I realised how sick Sarah really was.  The few spots on her foot told it all.  She had meningococcal disease!!!!
 
Sarah ended up in Christchurch Hospital. She hated it and didn't understand how sick her mum was. She would call out in the night wanting me.
 
It was at this time that I realised how major the surgery was that I had just had 2 weeks previously.  Not being able to look after my baby girl when all she wanted was her mum really pulled at my heartstrings.
 
Sarah and I ended up living in bed for the next two weeks.  We kept each other company and propped each other up.
 
By the time my six week check up came round the whole house was packed up and we were ready for our move.
 
At the six week checkup I still was not being able to void in the usual way and preferred to self catheterise so my bladder was emptied fully.
I was told after surgery everyones body sends mixed messages and I would eventually return to voiding normally. Also my urine had a strange smell about it, almost a chemical smell. 
My belly button also smelt horribly. Both my urine and belly button would settle down over time I was told.
 
Once we settled in the North Island I found a GP and got all my medical records transferred.      
 
Time passed and in 2006 after having this surgery to make me a "new woman"  I was still having to suck in to void and to stop the flow I pushed. Remember, this was my body sending mixed messages!!!  I wasn't normal.  Normal people push to void and suck in to stop, not me, I was arse about face so to speak.
 
I went to my new GP about this who then referred me urgently to Dr Michael Holmes at Waikato Hospital. I saw him a number of times and after doing urodynamics 3 times and fluid/urine charts for him he decided to do a cystoscopy and uretheral dilation.
 
This was done in 2006 and made no difference whatsoever to the way I had to void. It was found that there was a fibrous band obstructing the urethra at the bladder neck.
Mr Holmes was not happy at all. On many occasions he told me to shift back to Christchurch!
 
At this time I was beginning to experience pain in my left buttock and down my left leg so this became a priority over my voiding dysfunction. 
 
Over the next two years I went and seen a number of Orthopedic Surgeons who couldn't give me any answers for this pain I was feeling.  I had xrays, blood tests, MRI, I even had a bone marrow test done as one of the blood tests came back with unusually high protein levels.
I was diagnosed with MGUS (Monoclonal Gammopathy of Undetermined Significance). There’s no cure for this but yearly blood and urine tests are needed to keep an eye on protein levels.
 
By this time my family and I had shifted to Auckland and I'd learnt to live with not being to void in the usual way and took anti inflammatories with codeine when my left side pain was at high levels. Therefore I accepted my body was always going to be the way it was.
 
Jump to June 2012.  I began having UTI after UTI and the disgusting smell returned in my belly button. Urine being almost dark brown and malodorous and I began feeling extremely ill. 
I am a checkout supervisor at a busy supermarket therefore on my feet all day and having to run to the toilet more often made my job pretty unpleasant. I began regular visits to my GP for these infections and had numerous days off work. When was this going to end????
 
October 2012 I read Carmel Berry’s story in The New Zealand Herald (bless her)..  It was only at this time did "The Mesh" all come flooding back in my head.
 
Still with UTI I made contact with Carmel. She shared her experiences on the Mesh Mill I was then able to get the wheels in motion to get my mesh, voiding dysfunction, and left side pain in the medical arena again.  
After all the pain I’d experienced on my left side I never ever associated to my mesh surgery and obviously none of the Orthopedic Surgeons I’d seen did either. Thank you Carmel from the bottom of my heart xx.I then went to my GP in October and completed an ACC claim form and was referred to a Gynaecologist through the public system.  Once again because of the wait time I chose to pay myself and went and saw Dr Paul Macpherson (also Carmel’s surgeon).
 
December 2012 with all my previous medical records in hand I met Paul Macpherson.  With Carmel’s help I was well prepared for this consult..  "Please listen to me"  "Please help me".  He listened! He sympathised! He gave me answers!He confirmed mesh erosion and the sling being too tight. He talked in depth with me what he would like to do to get me back on track again.  At this time he put me down on the public system waiting list to have (the first of two surgeries) release/remove of the sling. Also took a swab of my stinky belly button.
 
The results of the Umbilical showed a growth of Pseudomonas.  A perscription of Gentamycin cleared this up within 2 days and now when the smell returns 2 drops of vinegar clears it up immediately.
 
From December 2012 I've had monthly urine tests which have all returned showing high levels of E Coli.  I'm slowly working my way through different antibiotics to bring these levels down and currently on 400mg Norfloxacin taking 1 tablet each night.
 
March 2013 after what felt like a lifetime ACC accepted my claim for a Treatment Injury (caused by mesh erosion).  I am absolutely stoked.
 
Part Two: May 2014

12 months have now passed and what a year its been!!!

Had surgery to release the fascia sling in May 2013.  Within 2 hours of having surgery I knew it hadn't corrected my problem of having to pee in reverse mode, I was gutted.

That night when the operating surgeon came bedside he suggested I should consider attending physio to correct MY POOR VOIDING TECHIQUES that I had developed since initial surgery in 2005.  Like it was all my fault!!!
For the 4 weeks leading up to my 1st physio appointment I had really bad numb bum, pain down my leg and a real dragging feeling.  Felt like everything was falling out my vagina.  Not nice.
First physio visit was centred around the numb bum and leg pain that was peaking at high levels.  I had always had this pain from initial surgery in 2005 but because it had thrown my pain levels off the scale I was told it was possibly because of the way I was positioned for the recent surgery I had just had.  Moving along to the voiding dysfunction, first exercise I was given was pelvic floor exercise (suck in my muscles as hard as I could).  Yeah good one, I peed myself didn't I!!  That was the end of my physio sessions. 
Feeling disheartened that I still wasn't being listened to with having to pee in reverse mode I made contact with another surgeon that referred me to a urologist in Wellington.  Acc wouldn't fund this but I decided to move forward and make the trip at my own expense.  The day before my appointment in Wellington there was a huge earthquake in Wellington, that was the end of that appointment for me.
June 2013 I began taking Gabepantin for pain, although not good for the brain it works wonders for the pain.
July 2013 I completely stopped being able to pee on my own,  I began self catheterising and continue to do so today.  
I returned to work just 2 days a week at the end of July.  I still get huge UTI's and even traces of blood in my urine but soldier on the best I can.  To the operating surgeon I became a 'mystery' and he was 'at a loss' as to what was going on with me so off I went to see a neurologist in October 2013 who referred me for an MRI.  
Results of this came back showing I have disc bulge at L5 and S1 and a small cyst on my ovary.  Naturally the disc bulges are being blamed for the leg pain and numb bum and nothing was seen directly to be causing my voiding dysfunction. By this time it was January 2014, I was referred to another urogynaecologist for another opinion.  First appointment with this surgeon was March 2014, since being seen by this surgeon I have had a translabial ultrasound, and another MRI.  I have been seen through the public system for the disc bulges.  For the appointment with the orthopaedic surgeon I took a lot of research that I had printed out that suggests sacrocolpopexy surgery (the surgery I had in 2005) can indeed cause disc bulges because of where the mesh is sutured to but the orthopaedic surgeron would not be swayed by any of the research notes I put to him.  Grrrrrrrrr. 
 I have been offered a Epidural steroid injection into the spine to relieve the pain.  Im not really keen on this so for now I am seeing a chiropractor twice a week.  I have found strapping an ice pack on my lower spine for 50 minutes twice a day does in fact relieve the pain. 
The funding has just been approved for me to have surgery paid by ACC.  I am scheduled for surgery early June to remove the full sling that's been implanted since 2005.  I continue to work regularly 2 days a week although occasionally the UTI's are so bad I can hardly put one foot in front of the other, I have to admit defeat and don't work at all..  Im still living on Gabepantin Naproxin and good ole Panadol.  I truly don't want another year like the past 12 months and so I have my hopes up really high that this surgery is going to fix me once and for all. 
Donna.
Another brave person speaks out... "Being one of the 389 cases that have been accepted and wishing that I had known about the risks involved at the time, I would never have had this operation.

The only risks that I was made aware of before my surgery was that the surgery may not work, this is completely different to now having to live every day in pain.

I would strongly suggest to anyone who is contemplating surgery using mesh, to not even think about it!

I would really like to know who the ten surgeons are in NZ that are qualified to be doing the procedure and why other surgeons are performing mesh operations without the proper training. I am now terrified of having another operation to fix the problem in case it makes it worse!" shared here WITH PERMISSION AND MANY THANKS.
This is Catie’s story.

I am very lucky that I am feeling so well now, it has been a long journey for me.

My mesh was apparently fitted perfectly.  About two years later I became aware that it was rotting and eroding inside me.   I had pain and discharge.  

My GP suggested that I must have an STD.  Of course I didn’t but never the less I was prescribed many courses of metronidazole and it is a shitty antibiotic with awful side effects.

I was elated when after 2 years it was discovered that the mesh was rotting and causing the discharge.  I finally had an answer.

It took another year before I could get the mesh removed.  I had the first reversal surgery in March 2011. It took 5 hours on the operating table plus one and half hours in the recovery room. .The surgery was ghastly because the mesh was so "stuck" on in bits and the surgeon had a lot of difficulty getting it out.

I have recently had my third and hopefully final surgery in August 2012. I had a good “clean out”, including a d & c procedure.   Finally there is no revolting discharge and I have no pain.

I’ve had a month off work but I anticipate another 12 to 18 months till I will be fully recovered. 

I was a triathlete; but now I have become sedentary.  I am finding it extremely difficult to get going again. But I am a very positive person and I know eventually I will get back into my triathlons.

My surgeon has been wonderful, and is in no way to blame for my issues.

This is Helens story.

“I am one of the ladies who have been affected by bladder mesh, mine eroded, I bled, pressure on bladder causing bladder infection like symptoms of which I kept going to Drs, extreme pain on intercourse and trouble on sitting with something sticking into me.

I have written 3 times to Health minister and so far have not had an answer, I have written to my specialist in Christchurch 2 times to as as to why I was not told about the dangers and risks, especially me as I have leukaemia and I am vulnerable to infections and even when I had it trimmed back, I was still not offered it to be taken out and still not warned of the dangers. I have not even had my email acknowledged. They have known since before 2000.

I emailed a gyno in Hamilton who does not use them and he told me they embed into the bladder and can take up to 12hours in operations to get it out.

In New Zealand, women cannot get anything for pain and suffering although mine has been accepted by ACC. It’s wrong.

The medical council wording says that Drs must also explain risks and had I known what I know now, I would never have it done.

I shifted to Australia in August and had it trimmed in June and still he never told me knowing my situation.

I wrote an in-depth email to Tony Ryall again yesterday and told him if he does not answer me I will contact Campbell live.

His receptionist replied stating that he had asked the ministry of health to look into it.

The minister has asked the Health Dept for some answers on this as I got an email back this morning and I told him how unfair it is for the women who are suffering pain that has affected their life now and yet can’t sue anyone. Nor get any kind of compensation.

I sent another email to say that this was urgent and while we were waiting other women would continue to be injured as there was no control in NZ and that specialists in NZ had to warn patients of all the risks it carried with it and That I looked forward to an urgent reply.

IT WAS A SHORT EMAIL REPLYING TO MINE OF WHICH I CC A COPY TO JOHN KEY.  AS I HAD ALREADY SEND 3 PREVIOUS ONES WHICH I DID NOT GET AN ANSWER AND TOLD TONY RYALL UNLESS I HEARD FROM HIM I WILL BE CONTACTING CAMPBELL LIVE. SO I JUST DELETED IT

I have emailed my specialist twice to ask why he did not tell me of the dangers of this mesh in the 3 times I visited him to have it in and when it eroded and pierced me he still had not warned me and you guessed it I have not had any reply from him and yet he knew when he

put it in I had leukaemia and I carry a high risk of infection and still last year and this year when I went back to him still with leukaemia, he still did not tell me or the blood specialist about any risk with these things.

I am sitting on a time bomb for me, when I can sit, and yet there are a high risk of complications getting it out especially for me and that is why I am very hot under the collar and for me I am worse now and it never helped not even in the beginning.”

MORE STORIES SOON...