Lucie Loves... Health & Wellbeing // My Mum's Mesh Journey Continued: A Blog Post About Women's Troubles
I am sitting here in Surgical Reception at UCLH (University College Hospital London) with my Hubby. I've just been given a 30ml shot of water, which I will be given once an hour before surgery to keep me hydrated, it's not quite a jagerbomb! 🥃
I am having mesh removal today, along with a urethraplasty and a vaginoplasty and repairs. It may not take all of the pain and nerve damage away but I have foreign body reactions to mesh and it is causing inflammation all over my body. My quality of life is terrible, I am off work with pain and I just want to be as well as possible, and I won't be until I get this removed.
I had to see Miss Elneil, the Surgeon and the Anaesthetist and got the all clear to go ahead with surgery, so the waiting begins...
It all began after having 3 children within 5 years (between the age of 19 and 24). I had 3 natural births and had pretty good labours. A year later, I had my 'tubes tied' by tubal ligation. I was 25, and had finished my family. As I no longer needed contraception, my periods returned to being very heavy and painful, as they had been before I had children.
I also developed a little problem – if I coughed, laughed or sneezed I would have a 'wee' accident.
However, I just laughed it off, as lots of women go through this after childbirth. Unfortunately, it was around this time that my periods became a big problem, and I was advised to have a hysterectomy, which I had in 1998. What I was never told, was that once your womb is removed, the bowel and bladder are not as supported, as the three support each other. I was also never told – until 2 weeks ago – was that I should never lift anything heavy again!
I recovered well after the hysterectomy, but my stress incontinence got worse. I had tests and was offered a 'new bladder procedure' that only took 20 mins and involved an overnight stay, as opposed to the old fashioned repair that took longer in theatre, involved a longer hospital stay, and needed less time off work sick.
It was called a TVT (Trans vaginal tension free tape). I was told that it was the gold standard option and that it was like a little 'hammock' or 'sling' that supported the bladder. The Consultant told me that the tape lasted around ten years. I had it done aged 38 in 2004. Immediately after the mesh procedure, I was taking ages to urinate properly and when I needed to go, I needed to go immediately! I told the Surgeon and he said 'that is normal after TVT'.
Within 6 months, I was having recurrent bladder and vaginal infections, and over the years I suffered prolapses - a cystocele and rectocele. I had terrible back and leg pain, and had spinal surgery, but still had back pain afterwards. I saw the same Consultant/Surgeon for around 10 years after I had the TVT with a prolapse, and I asked him if I needed my tape doing again as it was ten years later. He said 'no, your tape is fine', so I left it at that.
Fast forward to April 2017, and with ever increasing ill health and lots of niggling health problems, I saw an article in the Daily Mirror newspaper about Vaginal Mesh, and about The Victoria Derbyshire Show which had just featured vaginal mesh. As I read the article a lightbulb went on in my head and I realised that my TVT 'tape' was actually 'POLYPROPYLENE MESH!
The same PLASTIC used to make cable ties and garden chairs!
It had a link to a facebook group called Sling the Mesh - a vaginal mesh support group started by Kath Sansom, which were trying to get mesh banned and offering advice and support to Ladies affected. I joined them and was horrified at some of the injuries that mesh had caused.
I went straight to see my GP who agreed with me (once I had shown her the symptoms of mesh damage) that all of my ailments were probably due to mesh. I asked her to refer me to Miss Sohier Elneil at UCLH in London, who is a mesh removal specialist. She said she had to talk to my own Surgeon first. He said, 'Mesh is not a problem, but refer her to Miss Elneil'.
I saw Miss Elneil and she referred me to Croydon for a translabial scan to show where the mesh is, and then I saw Miss Elneil again in December 2017. She listed me for removal.
My daughter, Lucie, wearing her Sling the Mesh campaign t-shirt
The Sling the Mesh Group had 800 members in April 2017 when I joined and now has over 5,200.
Women keep joining and saying that their Consultant denies that mesh is causing their symptoms or that they are the first one of their Patients that have had problems. They are so relieved to find Sling the Mesh and realise that they are not going mad, that their symptoms are real.
Mesh is also used for prolapse repairs and hernia repairs and these people are suffering too. All mesh needs banning as it damages the body.
I am sitting here excited and nervous about my removal, but under no illusions that I will be miraculously 'cured' once it is removed.
Removal is a major operation as the mesh can erode and pierce organs, and I will probably always have nerve damage through the way it was inserted in the first place. It was inserted 'blindly' through the nerve-rich vaginal area using metal trocars. The Surgeons can't even see where they are pushing these needles!
My daughter asked me to write this post pre-operation, as she thought it was important to share my own journey with others who are going through the same thing. Read her original blog post on the mesh campaign and my battle with it here. I will write a follow up post once I'm done and we will see if I improve any.
If you have had any mesh implanted and are having problems, please join 'Sling the mesh' on facebook or @meshcampaign on twitter.
It has all of the symptoms of mesh damage (which are too numerous to detail on here) and has fantastic advice and support from people who have had mesh and also had removal surgery.
If I can stop one person having mesh, or at least opting for colposuspension or autologous sling using their own native tissue repairs instead, then I will be happy!
Hopefully 2018, as well as being the year that I get my mesh removed, may be the year that Sling the Mesh carry on campaigning in Parliament and get Mesh banned in the UK, in line with New Zealand which has just totally banned mesh!