Tag Archives: vaginal mesh

TVT Mesh Ongoing Saga – journal entry

My backstory:

I had a TVT mesh implant in 2005, during an hysterectomy because of Endometriosis of the womb through NHS England, in United Kingdom. A TVT mesh implant is polypropylene.

Polypropylene is a plastic.

Since being implanted I’ve had continual pain in the area (the groin) and blood in my urine. I have undergone several surgerical investigations which have all stated that the mesh is exactly as it should be and isn’t the issue causing my pain.

I’ve become intermittently incontinent which means I have days when I can hold my bladder and others when I cannot. However, all days are extremely painful – hard to stand up painful.

My daughter came across an article from America (in 2018) which stated thousands of women had been arguing with the makers of the TVT mesh and asking for compensation for injuries. So, since then I’ve been trying to get an NHS doctor or a consultant to talk to me about this.

Could it be the TVT mesh causing my groin and bladder pain?

Initially, when I challenged my implanting surgeon, the response was helpful. After collecting evidence of continual pain and the many (double figures) investigations/consultations/operations for bladder pain over the last sixteen years and showing him, he agreed that there was a possibility of the mesh injury and referred me to a consultant to look into removal of the TVT and he wrote a letter to that end.

That letter was written in 2018, now over three years ago.

I’m still waiting for a referral to a mesh removal clinic.

My day is spent dying to go to the loo. It doesn’t matter if I’ve just been or not, I still urgently need to go. You’ve possibly had a similar experience if you’ve ever had a sexually transmitted disease. Now imagine the mental torture of decades of that feeling. That is the life of women and men who’ve been implanted with this mesh around their privates.

Things which used to work, like diazepam, no longer work to relax the bladder. There is no release from the pain. Light or dark, the pain seers into the hours, intruding and tainting every single day.

The British Health Secretary, Matt Hancock at the time, apologised in April 2020 and insisted that people like myself suffering with this polypropylene mesh inside us should be listened to and promised us the best care from now on.

The past year I’ve been spent hours on the phone attempting to get the mesh removal clinic and my GP surgery to correspond effectively. Trying to save mental anguish, I’ve been marking a fortnight’s appointment with myself, in my diary between calls and trying to forget it inbetween. Not easy, as my bladder is physically constantly reminding me.

And now, quite frankly, I feel like a cash cow.

My GP surgery requested me to sign forms for extra funding. Apparently being implanted with TVT mesh is outside of the NHS normal remit although I was implanted by the NHS. I signed the forms. My GP then insisted I attend a community gynae clinic where they could refer me to the mesh removal clinic as my GP ‘wasn’t allowed’ to do it directly.

I travel to a face-to-face appointment with a consultant who didn’t bother to face me for the five minutes I sat in his company.

Although apologising for dragging me to the clinic and for the ongoing problems I am having accessing help he couldn’t refer me. The reason? His forms weren’t working. I don’t know who he was. No paperwork – as it was organised by text message. I have requested paperwork, twice.

It was a further six weeks before a referral went off from them, although it is not received by the mesh removal clinic at the University College Hospital London as they refused it because it’s incorrectly filled in. I’ve complained, cried and got extremely depressed but that’s all there is.

I’ve no more news to tell. The referral lies somewhere in the London NHS ether. After all, they don’t get paid extra to do their jobs in the NHS do they? I will call them all again next week.

Tortured soul, Watford, UK.

Thank you for reading about this very personal issue I have to deal with. It helps me a great deal writing about it. To me, the medical profession are extremely ignorant and unhelpful in this matter having also refused me mental health help, leaving me this as my coping mechanism.

Oh, I Could Strangle a Dolphin!

They scan sea-life that has been caught in plastic to check for the tumours plastic causes. They remove the plastic which has become entangled around the desperate creature’s bodies.

Scientists carefully remove the tumours before releasing them back into the water to enjoy the world. Thankfully the same marine biologists then monitor the health of the animal to ensure it recovers from the horror and attempt to do it all gently to avoid more trauma.

It is all heart-breaking. The amount of plastic in our environment which has not been disposed of properly. It has found it’s way into our oceans and is harming Earth’s wildlife and our environment.

The oil industry, which plastic is a by product of, move someway in some areas to help with the clean up with donations to ocean preservation charities and such like.

If I were to share a picture of a dolphin with plastic wrapped around it all my friends would share it in a moment because the Brits love animals. The BBC employ a huge posh orchestra to play alongside the programs we are screened for animals.

So why do they leave humans with the plastic inside them? – I am told to stop being dramatic and the medical profession are insisting that any tumours are coincidental. So, yeah, I’d like to strangle a dolphin.

Would that get me some of that media attention? Some attention from my friends and perhaps the doctors? Nope, it would just get me very wet and bloody – and they would probably arrest me for cruelty to animals.

I’d still be left with the plastic in me…and all the things I am not getting used to living with. The no sex for instance… bizarre that the only position we can achieve is the missionary.

The worse one for me is the pads. It’s embarrassing wetting and pooing yourself when you have only just turned 50 years old. Also they are so expensive. My GP could prescribe them but says he can’t. I use the big thick pads and they get used up quickly.

I can see you thinking about the fluffing kittens and gorgeous dolphins already. But this shit is important – pardon the pun. There are men younger than me stuck in the same position because of mesh used for their hernia’s.

Obviously, there is the pain relief. The judgement from everyone. The wheelchair etc. That’s not the half of it though. I’m denied basic rights and services too. Rights which I am entitled to under UN convention and these are all being stomped over.

I am often unable to get my medication – because they don’t have it or it is too expensive. Like nutrition milkshakes because I find it very difficult to eat. Even though nutritionist said I was to have them. At the moment they are unable to get me my HRT and using Brexit as excuse…

I’m in so much pain. I have to beg for pain relief and often prescriptions will run out before you are allowed to get another. Especially with the controlled drugs…pain killers.

They will not prescribe them before you need them. Fair enough. I am on 72 hour patch. I order on Friday. I run out on Monday but the doctor has a three day turnaround on prescriptions so…I can pick up my new patches on the Weds, I could go on.

Often the green sheets say you have been given medication you have not. My scan results are hidden from me – the dolphins and sea-life get more consideration.

I have TVT (put in 2005 plastic) and more painfully, if that were possible, a Stapled Hemorrhroidopexy. I feel ill. It was not the surgery my Rheumatologist requested for me. I already had Ehlers Danlos a serious problem with my collagen.

I use a stick and wheelchair where I can. Media is lying about pay outs…no we are just all dying slowly and painfully. As far as I am aware, at this moment in time not one person in the UK has had any recompense. I’m unsure why they would lie.

Disability awards in the UK. I keep getting temporary awards. Then the government decided to reduced payments. I was able to take my ID from my purse unassisted.

Gratefully I was assigned a support worker for a while to help me through the appeal. The governement then accepted the appeal, just before the appeal court date. They decided to award it but for just 18 months.

As it is tied in with your universal credit and rent payments this is a real tiresome chore.

They now say I have had the support worker for too long. It’s been over a year. I still have not had a referral for the removal of the plastic. I have not had any medical help other than trying really rubbish drugs and some physio therapy which caused the plastic tension vaginal tape to snap within me.

In my borough they have implemented a system called the Single Fraud Prevention Intervention and it only runs on housing benefit claimants. So we have to be proactive to gain our benefits. So for instance, if we don’t turn up for an appointment our benefits are stopped etc. Disabled people are included this program.

The benefit agency does not have disabled parking. I threw up in their staff toilets as their toilets were upstairs and there was no lift for the wheelchair. It was terrible. The staff have agreed that I do not need to attend to the office again.

I have tried to find out how to get an indefinite award but told I’m unlikely to qualify as I don’t have one of the qualifying illnesses but can’t find out what the qualifying illnesses are. Online Government pages says HIV and other serious illnesses like Diabetes are on the list.

I was asked to do a statement regarding my mesh – the plastic inside me. This was it. No dolphins were harmed during the writing of this blog piece.