Mesh survivors warn women – just say no to doctors

Lizzy Ford and Marion Garland to go with operation story at the BGH.

Lizzy Ford and Marion Garland to go with operation story at the BGH.

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Outwardly, Marion Garland and Lizzy Ford appear to be happy-go-lucky, quick to laugh and very healthy ladies.

However, because of an operation which they underwent to fix an embarrassing problem, they have been left with life-changing symptoms, coping with pain 24/7. It affects their work, their leisure pursuits and their relationships with their families.

Lizzy Ford who's operation at the BGH is the subject of a story by Kevin Janiak.

Lizzy Ford who's operation at the BGH is the subject of a story by Kevin Janiak.

And they have one mission. To make sure no more women go through what they have had to.

Marion, 51, from Galashiels, and Lizzy, 52, from Innerleithen, went to their GPs due to incontinence, which stemmed from a bladder prolapse.

They were both passed on to the BGH, where they underwent an operation in which tape, or transvaginal mesh, would be implanted to permanently fix the problem.

However, they say they were not fully warned of all possible side-effects.

Marion Garland to go with operation story at the BGH.

Marion Garland to go with operation story at the BGH.

And, for the two Borders ladies, this was only the start of their problems. They say the polypropylene mesh started a foreign body reaction – a response of biological tissue to any foreign material in the tissue – which left them in terrible pain.

Lizzy, who was the first of the two to go through the operation, said: “Five and a half years down the line, my life has changed. I’m not the same person. I have chronic pain every day.

“I’ve had to give up my work, I’ve had to give up my social life (I was a biker). I’m now using two sticks and a mobility scooter and a walker. I’m 52 years old and I feel like I’m in the body of an 80-year-old.

“The operation wasn’t even a success, I’m still on medication, so I’m actually worse than I was.”

When Lizzy reported the pain after her operation, she was told there was nothing wrong with the tape.

She said: “I got sent to see a psychiatrist and it was all made out that the pain was in my head and it had nothing to do with the mesh whatsoever.

I was told nobody else had ever suffered any side-effects from this operation ... I was the only one.”

Lizzy learned to live with her pain, but fell upon a story in a national paper about ladies who were taking their fight against mesh implants to the Scottish Parliament.

She said: “As I read their stories and got in contact with Scottish Mesh Survivors, it turns out that I’m just one of many.

“In a way, it’s an amazing experience to be able to know that I’m not on my own now. And that has actually saved my life, knowing I’m not on my own.”

Through Scottish Mesh Survivors, Lizzy met Marion, who was also told by her consultant that she, too, was the only one who suffered side-effects.

Marion asked her consultant questions regarding the mesh implants before she agreed to the operation.

She said: “I was reassured big time, I was told it was a ‘Gold Standard’ operation.

“I had the operation on December 14, 2011. From the moment they stood me up, I had horrendous pain. I actually thought they had dislocated my hip at one point, the pain was so bad.

“But the nurses told me that it’s just a little bit of pain and you think that you’re being a crybaby, and if others are suffering like this, maybe it’s just the way it is until it gets better,

“So you convince yourself it’s just you. I’ve never felt pain like that in my life, but had to tell myself it’s just me.”

However, by Christmas Day, the pain had got so bad, she was out of bed for only three hours.

She said: “On Boxing Day, my husband took me into A&E. They told me it was period pain. I left quite angry, dragging my left leg and in pain. My own GP, whom I went to as soon as they opened after the holiday, examined me. She found blood in my urine and my pelvic region inflamed. I was put on two extremely strong antibiotics and she arranged to get me an emergency appointment with my consultant.

“The day before this meeting, something burst inside of me. Excruciating pain that I could not describe ... for 10 minutes I could not move, talk or even breathe properly.

“But that evening was the first time since the operation that I could sit down. I had hoped this was the start of getting better and told my consultant all this the next day.

“He agreed that was probably the case and that my tape was fine. I told him about dragging my leg, but I was assured that I would be healing now.

“But by the end of January 2012 I was back begging him to take it out. My left leg, hip and groin were absolute agony. I could not walk, sleep or do anything normal and my husband and children had to take care of me.”

The surgeon offered to trim the mesh, but Marion, who had found out more about the mesh on the internet, refused.

She said: “I had Googled mesh problems, especially in the small hours when sleep was impossible. What I found horrified me. I grew to understand that if problems were apparent so soon, the mesh should be taken out in one piece if possible.

“If mesh is cut or trimmed its fibres start to degenerate much quicker, travelling into the body and causing further problems and as there are now two ends, these can irritate and cut tissue.

“No-one understood my pain. My doctors didn’t understand how I was in so much pain, my surgeon wouldn’t listen, my family were just looking at me because I looked the same, but inside, I was a mess.

“I was in constant pain, 24/7, and I couldn’t sleep. Even to this day, I need to put pillows between my knees when I sleep, because if my knees touch, I get a shooting pain, because the mesh is nipping my insides.

“It’s no way to live. My life is not the same, I used to go hillwalking with my husband, I can’t do this now. I have to seriously think about what I’m doing each day, because the tiredness, the leg pain, the internal pain ... you have to try to adapt your life to it.

The hardest thing is that moment when you know you are never going to be the person you were, and that is a horrific moment. If I had been knocked over by a bus, I would have accepted it better.”

Both ladies are now telling their story to ensure women can be made aware of the dangers.

Marion said: “If you are going through the operation, ask if they are putting polypropylene into you. If they are, say no.

“This is plastic. It hardens, it shrinks, it starts to give off chemicals inside your body.

“They don’t want to call it mesh or tape any more, they are midurethral slings – just a fancy name for what is an oil industry by-product.”

“A slightly longer operation can be done using your own tissue and there is no foreign body reaction. “If I had done this, I’d have been fine, even if the operation hadn’t worked. If it had failed, I could have tried it again, I wouldn’t be in any pain, I wouldn’t have foreign-body reactions, I wouldn’t be sitting here worried that I am going to develop rheumatoid arthritis, fibromyalgia, lupus, or any such auto-immune disease. The only perfect mesh for the human body is your own tissue.

“If there are women in the Scottish Borders who have had this incontinence operation and they are worried in any way, if they have any questions they want to ask, they should get in touch with Scottish Mesh Survivors.

“I don’t know what the future holds for me, but with this still in me, it’s not going to be healthy. I’m not healthy.

“If I get to retirement age, I think I’ll be doing quite well.”

Marion is considering an operation to remove the mesh. But, understandably, she is scared.

She said: “I’m terrified of this operation. I need it out, but I know how bad it is afterwards.

“They make it sound like they are taking out a ribbon, it’s not. They have to take out a swathe of your insides when they take out this tape. You can be left in worse pain than you were before the operation.

“And you have to wait until you heal to see if they can do another operation to fix the original problem.

“It’s not guaranteed.

“I have to think about it, financially, workwise and family-wise.

“It’s a big decision.”