One Woman’s Journey Through Hell

I have always said that mesh is a WORLD issue and I have shared women’s stories from far and wide. This one comes from Great Britain, from a woman who lives in Wales. What makes this more unusual is the fact that her husband is a doctor. I got to know this woman because she is part of a support group and for many years she has suffered in silence and endured the hell alone. Like many women in this position, her family never took this as serious as it was. Her youngest son has never known a mother who lives without pain and yet he and her other children have always known her love, even on her darkest days.

Women are tired of living in silence. They are tired of hearing of more women who injured by mesh with no end in sight. Many now are speaking up and they are a force to be reckoned with. I am proud to share her stories with the world through this blog and I thank her for allowing me to. Now read on.

My Journey Through The Rejection Of A Surgical Mesh Implant.

This is to inform those people that ask…  “What is YOUR Mesh Journey???”….

It is for my beloved family and beautiful friends that live with me here in this country and it is for the many wonderful friends I’ve made in the ‘Mesh World’ from different Support Groups all over the Globe… 

The term ‘Friends’ is not an adequate word to use for this wide group of amazing Men and Women that I’ve had the honour to get to know and love!! …

A small group of them have become closer to me than even some of my family, purely because of the intensely intimate details of our lives that we share and the pain that we bear together, every day and night. A pain so horrific it has driven many to suicide. Some have died due to the complications of this horrendous, evil ‘torture instrument’ called Mesh. Some are condemned to lives of utter misery through severe pain and disability because the Surgical Mesh Manufacturers are not stepping up to plate and financially helping these wonderful, but severely injured people. They will not admit they have made a HUGE mistake. Doctors and Surgeons will not admit there’s a problem because that will leave them vulnerable to legal action. Many are greedy and are still implanting Surgical Mesh because it is faster, cheaper and easier than using your own tissue. 

People in America, Canada, Australia and New Zealand are being told they are not covered by medical insurance to have the life saving surgery they so badly need. There are truly very few surgeons in the world with enough expertise to do Mesh Removal successfully.  

My Band of Warriors are the most AMAZING people I’ve ever ‘met’ and I can honestly say, if it hadn’t been for my love of my family and my love of those Warriors I would have departed this life long ago …. 

My Mesh Journey has been such a long one that it’s easier to document it here and allow anyone interested to read it. I’m sorry if it seems a little muddled at times, but I’ve just returned from yet another hospital appointment, where they’ve ravaged my body once again! – I haven’t stopped shaking yet…

LET ME MAKE THIS CLEAR FROM THE OUT-SET, I HAVE BEEN TOLD THAT THE BREAK-DOWN AND MIGRATION OF SURGICAL MESH WOULD NEVER HAVE HAPPENED IN THIS WAY IF I’D BEEN ABLE TO HAVE IT ALL REMOVED AS SOON AS I HAD BEGUN TO HAVE PROBLEMS… 

IF YOU ARE HAVING PROBLEMS WITH SURGICAL MESH GET IT TAKEN OUT AS SOON AS YOU FIND A REPUTABLE SURGEON …

My journey and time-line of procedures. 

5th April 2002

Combined AbdominalHysterectomy , Sacrocolpopexy and Colposuspension due to severe pain caused by Pelvic Organ Prolapse, Rectocele and Stress Urinary Incontinence. Ethicon Mercilene Surgical Mesh Sling was used. My surgeon, a friend of my husband, said…  

“This is new stuff! -You will be like ‘Wonder Woman’ after this!” …

I had problems with the mesh from the start, which was dismissed. -They denied that it was attributed to the mesh implant. On one occasion when I was very distressed and in pain, I had told the surgeon the pain was giving me nightmares and bringing back memories of something horrible that had happened to me as a small child, they jumped on that as a perfect excuse. They said all of this ‘pain’ was in my head. 

…  At the time my husband agreed with his colleagues -THAT was harder than any pain I’ve dealt with  …   

Early 2003: We went to Dublin for a week-end with close friends. After a short flight from Wales Airport I felt something ‘punch’ through the vaginal wall. I started to bleed. It was the Surgical Mesh.

My surgeon shouted at me …”This has NEVER happened to me before. This is a VERY rare case!” 

Yeah, that’s what we were ALL told! … All of The ‘SPECIAL’ People!!! ….

Early March 2003: I underwent Vaginal vault repair for mesh extrusion and erosion, this was after I was made to wait for weeks! – We even had to ring and remind the surgeon that I was still waiting to be admitted. The Mesh was infected by then and horrendous….

The months went by and I was still in the most excruciating pain. It was like having barbed wire trapped inside my abdomen and private parts, it was just like a cheese grater as though a kettle of boiling water had been poured into my stomach. I went back and forth to the surgeon and he just kept sending me away.- I felt as though I was making a nuisance of myself… I would lose complete control of bladder and bowel …. NO-ONE was listening…

Eventually I went to see another surgeon, he was also a friend of my husband. He examined me and discovered that what I’d been saying was true. The mesh had pulled away from the abdominal wall and was pushing down into the bowel and scraping, scratching and stabbing all of the soft tissue areas. It had caused horrific damage. – Nothing could be seen on X-Ray, CT or Ultra-sound Scan. All of my blood test results were normal. They said I had some sort of inflammatory disease that wasn’t showing up.

He said ” I’m sorry Jem, there’s nothing I can do –  it’s just too dangerous”…  

I wanted to die. I came home and I went to the top of the cliffs every day and just thought… 

” If I throw myself off, it couldn’t be any more painful than it is now…..” 

I must have had a Guardian Angel, because every time I had these thoughts my babies faces came into my mind and thinking of them was the only thing that stopped me from taking a dive over the edge. I dragged myself around. The pain was so severe… I was miserable, horrible and I felt my friends and family were sick of the sight of me – I just wanted to die…

Eventually I went to see my dear surrogate mother, Joyce. I cried hysterically to her and told her I wanted to die. That I couldn’t go on because the pain was so intense and I felt so ill. Ceri, my surrogate sister, came home and into the room …They both held me and hugged me. They rang my husband and told him something had to be done. I was admitted as an emergency and collapsed in the hospital after being examined. I was passed to the oncologist. They thought I had a tumour.  

9th November 2004 

Laparotomy : Incision Umbilicus to Pubic bone. 

Vaginal Repair, Partial removal of Surgical Mesh. I was informed ‘The Mesh had been removed’. I was NOT told that this had been a partial removal…. I was dreadfully ill. 

Months went by, I went back and forth …same old, same old…

They tried to push drugs at me, drugs that sent me ‘loopy -loo’ –  It became a pattern. I would take them and have a reaction, then stop them and go back to clinic. I couldn’t drive and started to lose control of bodily functions. Nothing worked! I was afraid to go on holiday. We’d book and pay for them, I would be ill. We’d cancel and lose the money. We learned in the end to always take out insurance! …

Eventually a Pilonidal Sinus (a little hole ) opened up at the base of my spine. I couldn’t walk. The pain was so bad. Then my bowel started to become obstructed… I was really poorly. 

27th April 2005

Laparotomy : Incision Umbilicus to Pubic bone.

Removalof Surgical Mesh and Oopherectomy. 

I was informed there were ‘sinister changes’to the ovaries and at my age (45 ) it would be safer to remove them. I also had to have a 10 pint blood transfusion after haemorrhage. – I was only informed that ‘There had been some bleeding which was controlled with pressure’ …. 

What they didn’t tell me was that they had lacerated the Iliac Artery and I had haemorrhaged… 

I was very ill after this operation. It took me a long, long time to recover. The wound had not been stapled correctly – there was an opening in the wound about 1″ long. It was a MESS!! – 

It is only in a recent operation with a different surgeon that I was told what had happened. They had stapled the artery and then stapled the bowel, ureter and nerves to the abdominal wall. – They didn’t tell me this!! – Even the letter to my GP just says “There was some bleeding which was controlled with pressure” …The letter to the GP also states ‘The Mesh was removed’ …

They lied to me VERBALLY and they lied by OMMISSION. 

I STILL had problems I could STILL feel Mesh scraping and digging. I was told it was the nerves, I was told it was inflammation. I was told all-sorts of crap, but they wouldn’t admit that the Mesh had only partially been removed …. OR tell me about the stapled artery and bowel…..

The most cruel thing is, that even knowing about the stapled artery, bowel and ureter, they sent me for all kinds of tests. I saw a few different consultants, all of whom treated me as though I was an absolute nuisance. I met with arrogance, I met with ignorance, apathy and one was blatantly rude. 

I had painful examination after examination, usually with a Sigmoidoscope – so, so painful – they couldn’t understand why  …  No-one knew about the staples!

A Colonoscopy – which was abandoned because I was in EXTREME agony.  

Another colonoscopy under general anaesthetic!! …

And BEST of all a Proctogram and sigmoidoscopy – I screamed the place down, but still I said they had to continue in order to find out what was wrong!! …. The sigmoidoscopy had to be abandoned. It was just too painful. As I was leaving that room the doctor said…

 “Jemima you are the bravest woman I’ve ever met!! ”  … Nothing showed up on X-Ray …

Eventually, I decided to try and just cope on my own!! …I felt they were making me worse!!…

Also the psychological and emotional damage was immense- for my family and me.

I refused to have any more operations or tests. A plan was put in place that I used a bowel cleansing regime and just tried to cope with anti-inflammatories and paracetamol. 

I struggled on and then because of a divarication ( a split down the middle of the tummy muscles ) I had a hernia bulging through…It was really painful. I cried and cried. I knew I had to have something drastic done. After long discussions with my husband and my family I decided to go to see a surgeon privately. We researched and we found a wonderful surgeon, an expert in his field. He specialises in repairs and plastic surgery. He is a burns specialist from Morriston Hospital Swansea.

He examined me and decided he could do the repair and ‘tidy up’ my scars.   

March 2007  

Laparotomy – Incision ‘hip to hip’ – Repair of hernia and reconstruction.

I was still going through a lot of pain, but by accident more than by design, I devised a ‘coping’ strategy!

I had a dental abscess after an accident to my tooth whilst on a weekend boating holiday. I was prescribed Metronidazole/ Flagyl … What a turning point!…

Even though I’d had it before – after my operations, I hadn’t realised how effective it had been! –  

Lo and behold, I felt so much better! For the first time in years things had settled enough for me to enjoy my life and enjoy my children. We went on holidays and life was good. 

So I used a schedule of bowel cleansing and Flagyl/Metronidazole every six weeks and I kept things under control.

By 2011 I knew that I was VERY ill again. My bowel was starting to become obstructed, the pain was intense, excruciating. So much so that I started to have ‘absences’ -That’s when the pain is so bad that your brain ‘switches off’ – you have no memory of what you have just done. You wonder where you’ve been…Christmas shopping was the first time I’d noticed this happening. I went to pay for something and the next thing I knew my cards and money had fallen all over the floor. The people all around me had suddenly disappeared  -( paid up and gone!) –  and the shop-keeper asked me did I suffer with ‘petit-mal’- a form of epilepsy. I put it down to the fact that I was so ill and so tired … 

Christmas Eve 2011 –  I went out for lunch – A FAMILY TRADITION !!…

I was in intense pain, I excused myself and went to the toilet. When I came back everyone asked where I’d been! – I had gone for almost an hour. When I lifted my glass to take my first drink, my jacket sleeve was all torn – A 6 inch tear had appeared! –  I had no recollection of how it happened! –  I don’t know to this day!

After Christmas I went to see my GP … The pain  was agonising, my bowel was obstructed, my ureters shut-down. I couldn’t urinate or defacate… AND I had a rectocele. I stood up all of the time through that consultation, I was shaking with the pain, determined I wasn’t going to hospital!! … 

Dr Anna said …”You HAVE to go to see a friend of mine because you can’t go on like this- I’ve known you for a long time now, Mi. I’ve NEVER heard you swear, but you’ve been here for 30 minutes and you’ve said ‘Fuck’ as many as 30 times’!!! … I was seriously ill!

15th March 2012 

Laparoscopic divisionof adhesions to bowel, kidneys and ureters.Removal of Surgical Mesh, Clips, Staples and Screws. Discovery that my bowel,left ureter and the nerve – (I don’t know the name of the nerve ) –  were stapled to the abdominal wall. The appendix was enlarged, stretched and adhered to thebowel and abdominal wall. The surgeon was appalled and took photographs to show us, he couldn’t believe the mess. Looking at the pictures was like looking at an abandoned builders yard.

Things were much better, but still not right. I was still getting infection and terrible pain. As the months went by, my bowel became obstructed and my ureters shut-down AGAIN !! …. I was very ill.

The anaesthetist wouldn’t believe I could be this ill so soon – until they got inside me

13th December 2012
Laparoscopic division of bowel and ureterial adhesions. Discovery of the staples used at the site of laceration to iliac artery – I asked the surgeon had he removed them and he said …

“Mi, its too dangerous to remove them. The artery will be compromised and it could blow at any time. You have to live with it” … Nether myself, nor my GP were ever informed of this laceration and repair.

I had to go to see him a few months ago, I was so ill again… 

I said … “I’m certain I can still feel mesh pushing down below the bladder and scraping the urethra. I’m sure I’m getting little filaments in my urine. It’s so painful”  

He nodded his head and said “Yes, I couldn’t get down below this point. I could have ended up making a hole in the bladder, also the ureters come in at this point. It’s too dangerous! – I want you to see a bowel surgeon … ” 

14th May 2013

So, here I am. I’ve just come back from the Hospital. The new bowel surgeon is a lovely lady… 

She is SO kind….

I still have mesh pushing down and eroding into the vaginal vault. The surgeon could feel it. It’s below the bladder, which has collapsed and glued itself to the surrounding area…  

I’m still having bouts of intense pain. Unable to urinate at times and I can’t drive at times… 

I have to have a shed-load of tests again …. I feel I’m back at the beginning….

I’ll never lose my sense of humour- not for too long OR my insane lust for fun and adventure.

I have the most beloved family and babies all around me. I’m waiting to attend the birth of the baby of my first-born son and his future wife! – I can’t wait! … I expect the call at anytime!! I’m proud to be given this honour and I’m over-whelmed with love

Once is desperation because of the pain, I went to see a psychic. I wanted to find out whether I would ever be out of pain and be able to live a normal life. She said .. ” You are going down a Garden Path, you have to follow it to the end !!”… Duh !!! What a waste of time and money!!

I’m going down the ‘Garden Path’- Stuck in a maze!! -BUT I’ve met some A- MAZE- ING people in my Garden! – That part of my journey I would never want to change, but I wish it wasn’t through the Trial and Tribulation of SURGICAL MESH for the sake of my long-suffering Warriors

This is NEVER going to beat me!  … I will NEVER allow Johnson & Johnson to shut me up, either!…

I’ll still be swinging up-side down – No matter what !! … 

And still I Rise  ( Maya Angelou )
L
ove and Light to ALL that walk here

Back to me.  First I want to make reference to the ‘swinging upside down comment’  This lady was in good physical shape.  At least she was before she went down the path of this journey.  She loved gymnastics and one of her favorite things to do was to hang upside down and swing.  She loves to swim off the shores of her beloved Welsh coast line.  She is far more than mesh.

If you read this and do not have tears in your eyes, then it is because you are not living in mesh hell. Not experiencing the intense pain of a product that MUST be removed by ALL manufacturers. There is no such thing as ‘good’ mesh. Doctors need to stop being schooled by these manufacturers and start speaking out and refuse to use it. Their nice living style is being paid for by the hell they are putting women through and now the word is out, they should be ashamed. It is time to stop this madness. I am sure every woman who lives in her own daily hell is sure to agree.
This woman’s mesh journey continues……………………..


7 Comments

  1. YVONNE TOBYN

    How horrific. I feel so much for this poor lady, I myself am experiencing symptoms which I believe are brought on through my TVT Mesh Implant.
    All woman who are indoubt of their pain should go with their Gut feeling, I am in the process of trying to find Doctor/s who will believe me that my Mesh could be a factor and trying to see a Specialist is proving to be near impossible!

    Reply
    1. lavalinda

      Yvonne, I feel for you and I hope you will eventually get the help you need. Yes we do need to believe in our gut feelings.

      Reply
  2. anne marie conley

    I have tears in my eyes your story is so similar to me keep swinging upside down we will win in the end of the garden maze .XXXXX

    Reply
    1. lavalinda

      Anne I will tell this lady what you said. Unfortunately it is the story of many long term mesh sufferers.

      Reply
  3. Babs

    I had a sling put in 5 months ago and seeing the doc who put this in tomorrow. I’m peeing without warning almost daily and feels like I have period cramping all the time but don’t have as uterus, tubes or cervix anymore. If my doc says everything’s fine tomorrow who else can I see to remove this thing? Oh and I have a foul smell that has been getting worse for 4 weeks now. I’m really scared.

    Reply
    1. lavalinda

      Babs I sent you a message.

      Reply
  4. susan davies

    i had tvt mesh 2011 been in pain ever since had it trimed twice in a year after 5operations in 28 months for prolapse now been told it may have gone in to bladder oncancelation list foreua+cystoscopy excision of mesh +/-colpocleisis its 5years of hell been trying to get something done now i may have to have bladder removed .i will be going in soon im frighted to death because i dont know what damage is done until they go inside

    Reply

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