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Lesley Hughes submission of 27 June 2021

PE1865/T - Suspend all surgical mesh and fixation devices

In September 2017 I attended hospital for insertion of mesh to repair a groin hernia.

I was not informed of the consequences and that chronic pain would become unbearable and feel like someone stabbing me in the groin and leave me unable to walk use a wheelchair. Nor was I informed that I would develop extreme fatigue, having to spend a large part of my day lying down. I have difficulty concentrating, my memory has been affected and I was unable to return to work.

All of this may sound unbelievable and even to me I can’t understand how a simple procedure can results in such a catastrophic decline in my health and have the detrimental affect it has had on my life and that of my family and friends.

After the operation, I eventually returned to work. However, it became difficult, I was finding that my overall health seemed to be deteriorating. I struggled to walk as pain seemed to be more frequent and severe.

I took some holidays, thinking rest would be the answer and tried again. The situation did not change and pain become unbearable, I was at a loss to know why and contacted NHS 24 for advice, also visiting my GP frequently looking for an explanation, they prescribed painkillers and signed me off work.

I tried on a further 2 occasions to return to work, each time leaving me in incredible pain and unable to walk.

I saw the surgeon who performed the operation, he was unable to understand why I was having so much pain and disability, explained that he was not a hernia expert so not able to advise me and referred me for CT and MRI scans, but no answers here, was also referred to chronic pain clinic, they referred me to pain management. I felt like a nuisance and was passed around the NHS, sometimes with the medical staff just looking at me, not answering my questions as though they had no clue or were fed up with me pestering them.

The painkillers did not offer relief nor enable me to be mobile, I tried everything suggested to me by NHS.

I spent the next 10 months trying to fix myself, researching on line, joining Facebook to speak to others who are suffering the same pain and worse. I felt completely reliant on and grateful to other people’s advice due to their own unfortunate similar story of mesh pain and removal.

Where is the care pathway? Where is the urgent medical advice? Where is the knowledge and experience amongst NHS?

I was then referred to a hernia expert.

During my consultation, he offered to remove the mesh for me, I was delighted with this initially but became concerned about the operation following a letter I received from him described how during this he would cut two of my nerves, I was also unable to find anyone else he had operated on to provide positive feedback.

Realising that this operation involved such risk, I took advice from other people on Facebook who had been through mesh removal and booked a private consultation in London with a mesh removal surgeon.

He informed me that he could remove the mesh, had done so many times and this would be a very careful operation without further damage or cutting of nerves.

Following this I had mesh removal surgery in London. This was not a decision taken lightly by myself and family as the cost was high, but I would rather be in financial debt and take the chance that I may improve than risk further health deterioration.

After the removal, I was informed that my body had suffered a gross inflammatory reaction to the mesh, that it had curled up, moved from the original position and stuck firmly to my pubic bone, it had to be chiselled off and was a difficult operation.

I am deeply aggrieved by my experience, I was not informed of the extent of potential consequences, nor was I taken care of when I desperately needed help and support. I have been disgusted and exhausted by the lack of experience and support around.

I think it will continue to affect me for the rest of my life and likely lead to an early retirement with reduced income and less quality of life.

I have continued mobility problems, try to manage pain, fatigue and the stress and emotion that comes along with health decline. I was a strong person and now I feel quite vulnerable. My life is very restricted and my future a more depressing place rather than a life to look forward to, I have uncertainty, worry and pain. I am still trying to pay off the debt of the operation, hoping to do so to allow me to retire and potentially get some relief from the increased pain going to work causes me.