Tag: TVT mesh

So, Still Nothing. TVT mesh saga.

Through frustration and tears I write but couldn’t feel less like writing.

Sounds coming from outside remind me of lives being lived to the fullest whilst I painfully pace the length of the flat to stop my muscles from wasting completely.

In April 2020 the health minister kindly apologised to Polypropylene mesh implant sufferers and promised our care would change. For some people, it has. They’ve been referred to removal clinics and have made a recovery.

Unfortunately, some of us, are falling through NHS guidelines and our GPs seem unable to get us on the correct pathway for treatment. It has now been three years since my implanting surgeon recommended my implanted TVT be removed.

In the past year my dedicated GP has referred me out and seen me returned back to her by three Gynae consultants. I’m so grateful that she continues to understand my concerns and push for me.

I suppose, like any bad conservation job, it’s difficult to find someone afterwards to sort out a satisfactory outcome. The hold up is simply put. There is a shortage of surgeons to remove the mesh.

I’m tired of being in pain. I’m tired of being tired. I’m bored at a level no one understands. I’m frustrated beyond what I thought was possible and I see no end.

What do I see? I see a future of dealing with it.

And, I am starting, just starting to do it.

Before, I was clinging on to recovery and getting my life back again. I’m realising and adapting in my mind to the real fact that I am going to be stuck like this; sat accessorized in adult nappies, lording it around trying to look hot in a wheelchair.

Tears sting my eyes when I say I didn’t deserve this. But, none of us did. The guy who came to the hospital to get his hernia repair, the woman who got her bladder fixed or myself who got the TVT mesh implanted during a necessary hysterectomy, none of us deserves what’s happened.

Of course, in this life no one promised me a life without pain. One isn’t born feeling fantastic. In fact it’s the complete opposite isn’t it? From our first tooth cutting into tender baby gums to our last poop being forced out of a dry arse; life is full of pain.

It’s different when the pain is not experienced by everyone. I’m obviously conflicted on this as essentially, no one promised me life would not have pain.

I suppose I’m saying I need to start getting out, using the wheelchair if I need to, and living my life again regardless of the TVT. There is zero point in waiting for removal as the health services have more important people to deal with.

So, it’s still me and my TVT.

Thanks for reading.

Blimey. Looks like I’m stuck with the TVT mesh.

The last few months have been hard. As hard as the last few years? Maybe not. Probably because my expectation level has dropped to 0.01 above zero.

Those that read my blog will know I had a vaginal polypropylene mesh tape implanted in me during a hysterectomy for Endometriosis. I thought it was, and I was told, it was, an inert material designed to hold my bladder up like a sling which would help with the stress incontinence they said I had.

When I woke up from the surgery in 2005 I felt an intense painful tension across my pubis…which I still have. It feels like I need a wee urgently and feels like something is cutting into me.

It feels like cystitis. I moaned about it since..the implanting surgeon gave me medication to ‘relax’ my bladder…as all they could find in my wee samples was blood, just a small amount.

The medication didn’t work and so ensued a fifteen year investigation as to the cause of this blood, pain and urgency. My GP referring me here there and everywhere to try and find the cause. Me becoming sicker and sicker.

I’ve done tons of physio. I’ve done diet restriction, addition and subtraction. I kept a food diary for two years. I kept an activity diary. I analysed every part of my life….and changed it. Including my work – several times – as everything I did seemed to irritate my groin. I did this for years. I eventually became exceptionally ill and was put on an NHS palliative care program.

My daughter got involved, together, through research we found that the TVT mesh that I’d had implanted in 2005 had left women with the symptoms I was complaining of. But, the kicker was, the longer it was left in situ the harder, almost impossible, it was to remove.

It was not designed to be moved.

It was designed to cause a ‘healing’ response from the surrounding tissue and build a tissue mass within my pelvic cavity. It was this mass which would then, in theory, hold the bladder in place. The TVT mesh’s rough edges were designed to irritate and cause the foreign body reaction which hurts us.

So, my lawyer contacted me yesterday to say until I have a doctor who admits my pain is caused by the TVT I have no case. Fifteen years of investigations and lies amount to nothing but exactly what they are.

I think the cost should be counted. I’m sat at home, on full disability, I’m 52 years old.

I was working full time. I’d retrained to become an electrician to be more physical and left modelling behind – I could no longer stand up in the shoes and it got me no where. Nothing worked.

I don’t complain about not being able to walk as I do have Ehlers Danlos but is this is being used as an excuse not to treat me? I got referred by my implanting surgeon for ‘consideration of removal of TVT’ in 2018 after I presented him with evidence of my continued ignored symptoms since 2005.

I’m no closer to removal now than I was in 2018. Further away really, as the removal specialist to which I was referred left the NHS soon after I saw her in Oxford 2019 (with my evidence) and then the hospital discharged me last month as they said they don’t have funds for TVT removal.

I was hoping to get somewhere with lawyers to go private as I know the government is refunding women who have done this. It seems discriminatory that us poor people reliant on the NHS are being pushed to the back of the queue and, as it appears in my case at least, still ignored.

So, no pay out. No removal as yet…Having been discharged from Oxford I’m not even with a consultant gynaecologist. It looks like I’ll be holding on to this torture device for a while longer.

Yeah, I know Matt Hancock apologised to all of us but he just says the right thing for the camera.

Thanks for reading.

On a good note I did submit my first book to a literary agent. At least I can think straight again.

The Problem with Shagging Sheep.

Comments on the medical device TVT mesh.

There is some talk of TVT mesh implants and how they have ruined women’s lives around the globe, but not enough, in my opinion, as it’s a scandal.

It’s development is interesting. The TVT’s inventor piloted the initial study on sheep. Unfortunately, the gentleman died but his work was continued…He worked for Johnson & Johnson. They recognised the monetary value in a product which would cause problems for life…and also supply Tena lady.

TVT is a questionable treatment for an ‘out of control’ bladder after childbirth and it was promoted as ‘the gold standard solution’.

It was designed to be implanted for life. Essentially it is a long tape placed around the bladder. It replaced existing operations and saved an hour in theatre.

It’s made from polypropylene plastic mesh – the same material the marine life have problems with.

The TVT is wrapped, blindly with needles, around the outside of the vagina, under the bladder and through the pelvic bone – if you are lucky the surgeons will miss your skene gland, rectum and clitoris.

It ought to be mentioned, originally it was designed for ‘awake’ patients so the tension could be adjusted.

I want to go back to the pilot though. I’m assuming that they used the TVT mesh on sheep who’d previously given birth AND who accidentally wet themselves. I pity the research student whose job it was to find suitable candidates for study.

How many days were really spent finding pissy sheep?

A problem with TVT mesh, is as the plastic gets older it shrinks. It can make penetrative sex difficult/impossible and generally it causes severe pain as your other organs move against it.

How did they research the sexual element with sheep? Assuming they bothered.

And then, how would the researchers extrapolate the data? I’m thinking all the comforting cups of tea in China will not get a sheep talking. And, were the sheep checked afterwards to see if they were still dribbling? Did they put smelling salts under their noses to induce a sneeze?

There is also the bipedal thing…I know it’s small but surely an important factor?

How could they check if the sheep could lift something? A sheep has never worked in it’s life.

Whatever, I await removal.

Thanks for reading.

Edited to add cartoon and to say coincidence or not (day after I posted this piece) the media have covered many personal stories as news regarding mesh implants. But they are muddying the waters by suggesting these implants are biological. They are not all mesh is synthetic or synthetic based polypropylene. Also,, there is some suggestion that the implants have just not been fitted correctly…no, it is more than that so all these pieces people are being fed in the media have been bent out of shape to stop the blame falling at the medical devices doorstep – where it firmly belongs.

 

Hard

Is that Samantha Harris?

Yes.

I’m the consultant who took over your case last year.

Oh, hello.

Sorry, it’s taken so long to get back to you.

‘pleasantries’

Bombshell

The hospital can no longer perform the surgery to remove the TVT mesh. We were unable to secure funding.

Yes, we do have the expertise to remove TVT mesh by laparoscopy.

No, the clinic which has been funded doesn’t have the expertise.

I’m sorry Ms Harris.

Yes, I will write to your GP who will need to refer you to the removal clinic.

Bye.

Thank you Doctor. Bye.

Summing up as I can’t write about this. It hurts too much.

Thursday is the Day – journal entry

So, I went for my CT scan at Luton hospital last week. The whole thing was utterly exhausting, and it was hard for me to keep things in perspective. I did get through it, I remained polite, I got my scan and left. This coming Thursday I will return to Luton Hospital and find out whether there is something sinister or not.

I find things difficult at the best of times but getting around during the covid19 pandemic is in league of its own, one needs a degree in logistics. To be frank, I’m in so much pain, the drive itself was a chore and I was pleased to arrive in plenty of time and find the disabled carpark fairly easily.

Because I use a wheelchair and/or a trolley seat (a mobility aid which means I can walk a bit and then sit for a bit) I had the foresight to call the hospital to check where I had to go. The information they had sent through the post didn’t include anything for disabled people. I wanted to make sure the scanning dept. was okay with me not having the blood test for the kidney function, as I wasn’t having the contrast.

The lady who spoke to me on the phone was really helpful and assured me that they always see people on time so not to arrive early, else I’d be waiting in the cold and that it was fine about the dye, I didn’t have to had the contrast.

The journey went well, I did arrive early in the carpark and thought it wise see the scanner zone and check out its location. Good job I plan for bad luck as it took me ten minutes to get out of the carpark.

I was not happy. You cannot imagine the pain I am in when I stand up. I have a walking stick and a light weight frame on wheels which pulls out into a seat. I walked around the disabled carpark, twice. I then pulled out my seat and sat down. A white van was parked near me. I could see someone sat in the driver’s seat. I stare at the windscreen.
The window of it starts winding down and a man puts his head out of the driver’s side. He shouts across to me,

“You okay love?”

“Not really,” I reply. “Am I expected to jump this fence to get into the hospital? Where’s the exit?”

He laughed.

Yeah, very funny, I thought, as I was barely keeping the tears at bay. He pointed towards the wooden builder’s hording wall just in front of us and said,

“It’s on the other side of that. Just go around to the right there, around the corner and you’ll see it.”

I thanked him, gave him a smile which hopefully did not say you fucking arsehole for watching me for what seemed like an eternity, stood up with the aid of my stick and pulled my trolley around the white painted hoarding and, yes, I found the exit of the carpark and finally, into the hospital.

How hard would it have been to put a sign there?

It was then a further ten minute journey for me of walking, sitting, walking to get to the zone where the scanner was. I arrived at 9.25am for my 9.30am appointment. The weather temperature was three degrees according to my car. I was glad to be wrapped up and was feeling smug that I had a flask of tea in the car for when I returned to it. My heart was proper pounding in my chest from the effort, but I was pleased I’d not used my wheelchair as it had all been up hill.

I had my mask on. I’ve got a black fabric one as I have lung disease and need to breathe. Since I was little, I’ve covered my mouth in the cold. It hurts less when you breathe in through a scarf or big fluffy collar or cowl. I don’t mind wearing the mask but when I walk, I cough. Nothing clears the pathway faster, like Moses parting the sea as I walked through the hospital grounds, people crossed over the road rather than walk near me.

I found the area where I needed to be as a kindly man could see I was lost and struggling. He pointed out that I was really close, and but for the lack of signs I would have known.
The kindness of strangers is something I’ve come to rely on since becoming sick. I’m thankful that as a tall person I used to help people out when I was able. As a tall person you are obliged to help out shorter people or people in wheelchairs, it’s part of the ‘tall people’s’ code.

Arriving in Area D…the CT scanner. I realized that it was directly opposite Area C, which is the children department. When I say opposite, I mean the CT Scanner door was approximately two metres from the entrance to the children’s hospital.
I only point it out as they were queuing to get in and I had to wait amongst them.

Social distancing rules have seen the hospital remove seats and benches, so I was pleased with my trolley seat and tried to position myself so that when I coughed, I was facing the scanning unit rather than the pathway. I heard several envious comments about my seat.

I feel it is an ill thought out plan to keep people waiting in the same area where sick children are also waiting. It was impossible to social distance. In order to get their temperatures checked before being allowed into the hospital this queue was being pushed passed by people leaving the hospital too.

Also, it is wrong to make people stand in the cold when there is a respiratory illness going around.

Getting temperatures checked before being allowed INTO the hospital. There are too many things wrong with this…I mean the point of coming to the hospital is that you are ill.

I listened as one by one the parents were told that only one of them could attend by the side of their sick child whilst being made to stand next to strangers coughing. There was one nurse on checking them in and she was doing a cracking job at moving the queue along. I cannot blame the staff, but surely common sense would suggest this queuing does not meet the anti-transmission guidelines.

As per a sign’s instruction, I knocked on the scanner unit’s door and waited. Nothing happened so I waited until exactly 9.30am and knocked again. A serious looking man put his head around the door and asked my name. I inwardly cringed as I feverishly hoped someone else would be in there and I’m not alone with him but keep my anxiousness under control smile and give my name. He doesn’t smile back, nods acknowledgement, repeats my name and closes the door again.

A few minutes later he opened it again and tells me that they have a patient in, and it shouldn’t be much longer. Then he squeezed passed me to go get a cup of tea. I will never know whether it was for him or the patient. I did feel that when he passed me with his warm cup of tea, he had a proper smug look on his face.

This is the perceived racism I feel when faced with some health staff since the attack, stuff I didn’t notice before but now take more personally. The sly looks. The extra waiting. The not smiling back when you smile at them. I’m more wary now, that is sad. I used to just accept it but now I cannot help but question if I am waiting longer because of my name or something else I cannot control.

I was coughing pretty much constantly by the time they opened the door, and the patient came out. I was in at 9.50am and was not in a great frame of mind. The tea man introduced himself, as the radiographer and then started to question my unsuitability claim for the contrast dye.

Back in March 2019 I had an MRI and I had contrast. It was awful and the burning didn’t stop for a month. A blood test, taken in A&E in April, showed my kidneys were showing signs of damage. The doctor told me to stop drinking alcohol rather than listen to me (and my daughter) that it was the contrast dye. I don’t drink alcohol. Not all white people like it. It is water usually in my wine glass so that I look like I’m joining in.

I did my own research and found out that people who have undergone lots of surgical procedures may not be suitable for the dye. The burning I was feeling was at the areas where they’d cut into my body at previous occasions and operations. The ions in the dye tend to group together in these areas which can cause burning sensations and pain. I don’t know why it affects the kidneys.

The MRI scan last year had taken over an hour and I’d eventually asked for it to finish as I couldn’t lie on the bench any longer. The report came back as everything okay. They didn’t note my lung disease, the TVT mesh, my leaky heart valve or the rectum staples. The only thing they noted was that I didn’t have a womb, but my referral letter had said I’d had a hysterectomy.

I thought they’d gotten me muddled with another patient, but this was all at Watford last year, now I was at Luton. Different time, different location and hopefully a different outcome.

I hand Mr tea radiographer man, the forms which they’d sent me. These are forms giving consent for use of the dye and for consent for the images to be used in research and the blood request forms.

He looked a bit annoyed.

On the forms I’d written I consented for diagnostic purposes only and not the contrast injection as I have a compromised immune response issue adding it is not suitable for me. And I signed it.

Clearly, I wanted the normal CT scan and as I had already phoned up them about it, I didn’t see why I needed to justify it again to an arrogant radiographer who obviously thought I was doing it just to annoy him. He came around from behind his glass screen.

“Who said you can’t have the contrast?”

“I did” was my response and I went on to tell him what had happened, but he waved his hand at me and went back to his little booth…he shouted,

“Which hospital did you have the MRI at?”

I replied and then watched him call Watford General. I look at him and I’m thinking…WTF. If he thinks for a moment, he can bully me into something which I know will hurt me he is sadly mistaken, and I start putting my coat back on.

I can hear him on the phone…”yeah, Samantha Harris, says she had a reaction to the dye….”

I catch the eye of the female nurse helping him. I tell her silently mouthing the words…”I’m going to go now as I’m not having the dye.”

I start to stand up as he isn’t listening…he is not listening to me at all. I’ve not had the blood tests to show that my kidneys are fine for the contrast dye. I’d had this at WGH, and it had come back okay. It obviously was not okay otherwise my kidneys would not have looked like a heavy drinkers a month after the scan.

He marches over to me and gives me the forms, releasing them just before I get my hand to them.

“You may as well have these back then.” He states as they fall down on floor near my feet.

He returns to the glass screen booth and the nurse introduces herself and helps me get up on the bench. I coughed a lot. I managed to lie still for the few seconds it takes to take the scan. I’m told I can go home as soon as I am dressed.

I make my way back to the car. I pour myself a cup of tea and cry. I then realise I’ve forgotten to get all the blood tests the consultant wanted done. I cry a bit more. I’m too tired to go back into the hospital, I drive home carefully and fall asleep until the next day.

I almost cried when the blood clinic nurse put the needle in my arm for the blood tests. It was nothing to do with her technique, it’s obviously me.

I think this shows that I am a baby. My pain threshold must be exceptionally low to be almost on the ceiling for a little blood being taken.

To me, this has to be a good sign.
Now it’s a waiting game.

I find out on Thursday afternoon what the colorectal consultant thinks about my sore behind…she is called Dr Brown. Bless her.

Ashamed of Myself

Today, and yesterday my thoughts have slipped

Suicide and thinking about it

Thoughts started sliding last week

The Oxford doctors called and told me I’m weak

Postponed my mesh removal surgery again

My lung disease has drawn a line

They’ll look at my case in four months time

 

Because of covid19 I must wait again

Regardless of my lack of life

Regardless of the pain

In four months time

I’ll still have lung disease

Corona virus will still be around

It will be the winter months

And again, I’ll be bound.

 

So yes, ‘Hooray’, the report came out

‘At last!’ Us victims do shout…

Matt Hancock apparently apologised

For all the doctors and healthcare’s lies

‘Sorry,’ they say, for not listening to me

The NHS is ‘sorry’ for my sixteen years of misery

Nothing changes though

I’m still Johnson & Johnson’s

Cash cow for eternity.

 

How clever of a nasty cosmetic firm

To make my bladder burn

To be able to sell me a pad?

Just switch on the TV to see the ads

Telling me incontinence

Can be ‘pretty’…

Who are they trying to kid?

They should be made to sort it.

 

I shouldn’t be in terrible pain

I shouldn’t be thinking, ‘how do I get through the day?’

I should be able to have a sexual thought

I should be able to walk

Embarrassed to let everybody know

When outside, I’m distraught

My mind is capable of one thought

Where is the nearest place I can go?

 

So yes, I’m ashamed to say

Been thinking about ending it

Today

Pain and disappointment

Stretch out long, before me

I search for someone to support me

Toss and turn all night

Vomit all day

This is not life’s way

I will NOT give in to it

I just needed to communicate

To stop me walking

Towards the gate.

 

Thankfully I have poetry, but is it going to be enough?

 

The end.

Sorry, this is very depressing but I had to do something to relieve what I am feeling.

By Samantha “unextraordinarybint” Harris

TVT mesh victim.

https://news.sky.com/story/nhs-must-apologise-for-dismissing-pelvic-mesh-and-anti-epilepsy-drug-patients-suffering-review-finds-12023175

https://www.bbc.co.uk/news/uk-wales-53323780

https://slingthemesh.wordpress.com/media-news-updates/

Top London Hospital Admits Patient Safety is at Risk.

Kings College Hospital is putting the safety of some of it’s patients at risk. Safeguarding patients should be at the forefront of hospital policy. KCH are admitting to having lost control, in part, by being unable to investigate historical cases.

I have been waiting for an investigation into what happened to me during a routine operation at Denmark House, London.

Here is the response I am getting…

Thank you for your email. I have escalated this to the General Manager. This was initially forwarded to the Service Manager. We were waiting for advice from the consultants as confirmed by the Service Manager.

I am unable to log your complaint formally as this is over 12months – please refer to our complaints procedure. Therefore the way forward is advice from our Service Managers and the Division.

It’s polite, for sure, but it never goes anywhere. Saying that there isn’t a complaints procedure for me to follow as it’s over 12 months is not responsible.

Put as briefly as I can, after theatre I had a major problem with the oxygen mask where I almost lost my life. I complained. It happened on the 12th December 2012. I also asked some questions regarding the other patients who were lying, in gowns, sleeping next to me in the freezing corridor.

Then, last year, I requested a copy of the letter the consultant wrote to my obviously inadequate GP. This urogynaecological consultant said my womb and cervix (removed by hysterectomy at another hospital previously) were fine and not eroded by the TVT mesh.

Outraged, I complained again and asked them to re-investigate the attack on me and investigate the operation. I did it as soon as I found out. Now it’s been a year since I started asking Kings College Hospital London again.

So if you or a loved one are booked into London College Hospital, be very cautious of how you are being looked after. I have written a partial account on my blog for you, but basically I woke in the cold corridor – supposedly in ‘Recovery’ and had an ugly incident with staff and oxygen mask.

So, there is two incidents or situations for them to investigate, the oxygen mask attack in recovery and the surgical operation to view the TVT mesh, I was put under General Anaesthetic for, they couldn’t have done it as the womb cannot regenerate.

As yet, I have not named the consultant online but I feel that the hospital, in it’s refusal to take this seriously and respond in a reasonable amount of time, is leaving me little option but to name them. I know that the consultant is aware of the situation as I called them.

Incidentally, when I did call the consultant… In the truly demonic style of the arrogant doctor, they advised me to get my GP to refer me to them. After so many years of suffering, which could have been cut short by this consultant doing their job, I found myself slamming down the phone.

In 2012, this consultant concluded the mesh was not the reason why I couldn’t have sex. It was not the reason that I was in continual groin pain or had blood in my urine… As a result, I was sent for physio, the physiotherapy I was given was not appropriate and it snapped the TVT mesh completely and I am now spending a lot of my time in a wheelchair.

I am awaiting removal of the TVT mesh – it’s seven years later, now 2019. That is seven years of my life. Four of which have been spent on benefits as I can not work consistently well enough to support myself financially.

The NHS consultant who lied and cheated me continues to get their £70,000 a year tax free plus the other benefits – Johnson and Johnson flew the consultants out to Las Vegas, as a bonus for installing the TVTs…I digress sorry…brain fog.

So, as I said, I called the consultant, their arrogant and dismissive response was to get my GP to refer me to them… Obviously I am not going to do that. So, I find myself waiting, I am now waiting for the investigation into my care at King College Hospital but I’m not holding my breath.

I’m also waiting for the mesh to be removed…the NHS quick to put it in and poison me and deny they are doing so. Unfortunately, not so fast to remedy their mistakes.

I will continue to share as I suspect I am not the only patient suffering because of the mesh or Kings College Hospital.