Mesh Lives Matter: Told I would “have to live with the pain”

Dedication: Kath Sansom, founder of Sling The Mesh campaign. Without Kath i would be none the wiser that the pelvic mesh surgery I had in 2006 was the reason for my excruciating chronic pain, lack of mobility and infections.

My life is never going to be how it should be.

My story begins in 2006, I had a TVT mesh implant procedure after many years of suffering with stress urinary incontinence due to the births of my three children. I believed my surgeon when she told me that the procedure was very safe and came with only minor risks that were associated with all surgeries. My surgeon failed to tell me that complications such as giant cell foreign body response, chronic inflammation, painful intercourse, nerve pain and urge incontinence would impair my life forever.

I was a fit and healthy 38 year old women. I was enjoying my life; in fact, life was great! I had a fab hubby and three children, two sons and a daughter, who I was very proud of. I had a job that I loved, working in a secondary school as a learning support teaching assistant, supporting students in lessons.

During my follow up appointment with my doctor, after the mesh surgery, I mentioned that I had been suffering from pelvic pain, pain during intercourse and had developed severe urge incontinence. I was told that I was still healing and needed to give my body more time.

Within a year of having the Mesh surgery the stress urinary incontinence reappeared, and I also had ongoing urinary tract infections, especially after sexual intercourse. My Doctor suggested the infections were due to me not being clean, and that I should shower before and after sexual intercourse. I felt embarrassed and humiliated at what my Doctor had said. I’d never had UTI Infections until after Mesh surgery .

I actually lost count of the number of times I had to attend the Urogynaecology department of my local hospital between 2006 and 2017. It became like a home from home, to such an extent that I was on first name terms with the nurses. When I checked in for appointments I would joke that I was there again!

Over the next few years I had to have numerous urodynamic tests. Two tubes are placed into the bladder, one that tests pressure and the other which enables saline to be pumped into the bladder. Then the bit which I always dreaded the most: a tube up my back passage. It’s just embarrassing, isn’t it? Invasive and slightly humiliating, no matter how nice the doctor or nurse is.

After the tubes were placed, the nurse would take some baseline measurements of my pressures, which were shown on a computer screen. Then she’d ask me to cough whilst standing over an incontinence sheet (coughing, it turned
out, was a key part of the urodynamics!) This proved that my stress incontinence had returned.

In a follow-up appointment the consultant gave me some options, one being more surgery to put in another Mesh product called a TVTO. This would sit on top of the TVT or I was offered Botox injections which are injected into the bladder. Botox is used to treat Overactive bladder symptoms, Urge incontinence and Stress urinary incontinence. I opted for the Botox, and went on to have the injections four times in six years. Each time you have to have a general anaesthetic for the procedure to be performed in an operating theatre.

I also developed excruciating pains in my lower back, hips, groin, legs and feet along with pins and needles, patchy numbness and altered sensation. My GP referred me to see a pain consultant, who diagnosed me with peripheral neuropathy (nerve damage). I was investigated for Multiple sclerosis and a brain tumour. All these tests came back as normal and the Doctor commented that it was “unusual” not to know the reason why I had these symptoms. The treatment for my pain was powerful opioid drugs, and I was told that I would “have to live with the pain”.

I was now unable to do normal things without debilitating pain and fatigue. I dragged myself to work each day, and at the weekends I was bedridden. I was unable to do normal things such as shopping, housework, and walking my dog.

By chance one day I was watching the Victoria Derbyshire television programme and caught a discussion about mesh surgery complications. Kath Sansom, founder of the Sling The Mesh campaign group, was talking about pelvic mesh and the associated complications. This was my lightbulb moment. I realised that this could be the reason for my eleven yearsof pain and illness.

I joined the Sling The Mesh Facebook group whose members now total 7,600 and chatted with other members whose symptoms were very similar to mine. I learnt that mesh is made from polypropylene plastic – the same material used to make drinks bottles and garden furniture. Mesh can attach and slice through organs, causing chronic pain, sepsis, loss of sex life, and even organ failure.

Searching through the group’s files I came across information about a Urogynaecologist called Suzy Elneil, who was helping women with mesh complications. I made an appointment to see Doctor Elneil, which meant traveling 200 miles away from my home. She confirmed my symptoms were probably related to the mesh.

In 2018 I had two mesh removal surgeries, which also included vaginal and urethral repairs due to the damage from the mesh. The surgeries are very complex, as removing the mesh is likened to “removing bubble gum from hair.” After my second removal surgery I became unwell, and spent two days in intensive care, as well as needing to stay in hospital for three weeks to recover.

Due to the mesh damage, I have now been left with lasting pudendal/obturator and femoral nerve damage.

Living with a chronic condition can be debilitating; both physically and mentally. I can feel worthless and a burden to my family, and I have a myriad of intense and long-lasting feelings – everything from exhaustion to fear to guilt because of the demands made on my family.

Building a new life is a challenge, but connecting with other women who are dealing with similar symptoms and struggles eases the loneliness. This is why Sling The Mesh is so important to me; as an admin on the Facebook group I can offer love and support to others. My life has changed direction since Mesh but I tell myself to make the most of it, to live and exist in this very moment, chase my dreams and fight for my happiness.

This is also why I took part in protests in Manchester and London on Thursday 9 May 2019. We were protesting against new health guidelines published in April 2019 by the National Institute for Health and Care Excellence (NICE). We are also fighting to keep open a specialist NHS mesh removal service in London, after it was stopped with no prior warning. Some operations were cancelled by hospital chiefs just days before women were due to receive complex mesh removal surgery – some of whom had waited up to two years for surgery.

Our protest was about standing up for women whose lives have been torn apart by mesh. Manufactures want profit, their prime concern is not the wellbeing of women. We have to stand up for ourselves.

This is not just a UK problem it affects women around the globe.

During July 2018 , Mesh for stress urinary incontinence was suspended in hospitals across England after a Government safety team found its causes life changing and life threatening injuries.
The UK now has a suspension of vaginal Mesh.
In April 2019 the Indian government was considering stopping the sale of pelvic surgical Mesh.
Also in the same month the FDA ordered all manufacturers of surgical Mesh intended for transvaginal repair and prolapse to stop selling and distributing their products.
There are lawsuits in the UK, Canada , US and Australia
More than 100, 000 transvaginal Mesh lawsuits have been filed in the US , with the manufacturer of the most commonly used Mesh, Johnson & Johnson , facing the lawsuits.
The Australian government issued a national apology to women affected by the Vaginal Mesh scandal, acknowledging decades of ” agony and pain”.

Sling the mesh wants Mesh to be banned. If this is not possible then we would like Women to try a range of techniques before Mesh is considered. We recommend a range of non-surgical options first such as lifestyle changes and pelvic floor training.

Sling The Mesh continues to offer support, love and advice to its 7.6k members.
We also welcome ladies and gents who are suffering due to Hernia Mesh.
Many friendships have been forged because of this amazing group.
Empowered women empower ❤ xxx

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Beverley Burrows

I'm married, 51 years of age & have 3 adult children & a 3 year old Grandson. I'm a Learning Support Teaching Assistant at a secondary school.