Guest post by Beverley Burrows
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, the stress urinary incontinence reappeared, and I also had ongoing urinary tract infections, especially after sexual intercourse. My GP suggested the infections were due to me not being clean, and that I should shower before and after sexual intercourse.
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 many 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 a TVT- O, which is another mesh procedure, or to have Botox injections which are injected into the bladder. I opted for the Botox, and went on to have the injections four times in six years.
I 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 he commented that it was “unusual” not to know the reason why. The treatment for my pain was powerful opioid drugs, and I was told that I would “have to live with the pain”.
I became 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 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 I for my eleven years of illness.
I joined the Sling The Mesh Facebook group and chatted with other members whose symptoms were very similar to mine. I learnt that mesh is polypropylene plastic – the same material used to make certain drinks bottles. 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.
This is also why I will be taking part in protests happening in Manchester and London on Thursday 9 May 2019. We are 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 is 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.
Mesh Lives Matter protests will take place on Thursday 9 May 2019 in the following locations:
LONDON: Outside University College London Hospital (UCLH), noon-2pm
MANCHESTER: Outside Hilton Deansgate, 8-9.30am
More information from the Mesh Lives Matter Facebook event:
In 2019 it is unacceptable that women have to fight to be heard when it comes to their health.
We still face a misogynistic medical community who treat women as 2nd class citizens. Women are often not listened to, patronised, or their suffering is down played.
Patient experience in campaign group Sling The Mesh, an advocacy group supporting women harmed by vaginal mesh, shows that medics often blame women’s suffering on psychological issues or neurosis.
This is not good enough. Gender bias in medicine must become a thing of the past.
We are rallying to protest that surgeon Suzy Elneil’s mesh removal service has been stopped with no warning. She has been helping women injured from mesh implants since 2005.
We are also rallying against new NICE healthcare guidelines that pave the way for our daughters and grand daughters to be harmed by pelvic mesh.