Tag Archives: mesh

English Writing, Health, mental health, mesh, poem, united kingdom

Bank Holiday Weekend? – poem

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I didn’t even know it was bank holiday weekend

One lives through the day and then it all blends

What stops me from going?

I’ve never been in so much pain yet had so much to live for.

I feel so miserable.

To a depth

I’d never have thought it possible.

Pain stops,

DROps

Plops

Soul is left,

berift,

adrift,

Listening to lives being lived.

End.

By Samantha unextraordinarybint Harris on 27th August 2021 Watford, Herts, UK.

Too depressed to even write what going on. Still no referral for TVT mesh removal or care/treatment.

Disabled/Differently Abled, Health, lung and heart disease, mesh, right to healthcare, united kingdom, womens rights

No Better – Review Stapled Hemorrhoidopexy. Honest/Blunt.

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A week ago I had my appointment at NHS colorectal specialist regarding my butt pain.

This is now the third hospital I’ve been seen for looking into this. I wish they’d share medical records… I’m reminded of how, last decade, I used to go from hospital to hospital over the bladder pain. Then I read an article which told me it could be the TVT polypropylene mesh.

I read through the doctors letters that I had and saw that it was being mentioned as okay when I wasn’t really aware that this was what they were looking at.

Each consultant said the same thing “no erosion of the TVT”. I know now that there is no possible way they could have seen this by these investigations and each one of them lied.

Taking you back to 2005 when I had an Hysterectomy for Endometriosis because of night sweats and crippling pain. I was discharged from the ward six days after my surgery without clearing my bowels. I was re-admitted five days later having still not cleared my bowels.

Four years after that I am having a Stapled Hemorrhoidopexy, which I am unaware is a new procedure. The story of getting to that point is a whole book of horrors for another day.

I wake after the Stapled Hemorrhoidopexy in what the medical profession disgustingly call “exquisite pain”. That is not the correct term. The correct term would be horrific pain that will never be forgotten, worse than child birth. I woke screaming like a banshee. There was nothing exquisite about it. Sick sacks.

If you look up Stapled Hemorrhoidopexy, the gumph will tell you it is a painless, minimal invasive procedure and that you will be back to work the next day. It is not true. Far from it. This is a cut and shunt that you will be lucky to be standing up comfortably the next week, let alone the next day.

It definitely doesn’t suit everyone and if you have Ehlers Danlos like myself I would recommend not having it and demanding the older technique with biological material and a gentle hand. A huge mechanical stapler being shoved up your arse is not easy to recover from.

I have not yet found out what they used to fix the cut, the surgeon told me it was a ‘composite ring’. I am in the process of getting my medical records because of the TVT Mesh case I am trying to bring against the NHS, I am trying to find what this ‘composite ring’ is made of…because of my butt pain whilst I’m there.

It’s been eleven years since I had the Stapled Hemroidplexy to correct my evacuation problems. It didn’t work. It never worked and now it’s incredibly painful and has been for a few years – getting worse as time goes by.

Care is bad for women patients in the NHS. Since closing the women’s hospitals we have to travel hundreds of miles. I’m in so much pain, it is incredibly hard to to travel to several different areas of the country for what is essentially an inch difference on my body.

Common sense seems to have left the building and thousands of people are left on benefits because of operations and procedures like this…it costs the government and the tax payer millions.

During my recent (Dec 2020) consultation I was not asked my history…we didn’t have time. My kind doctor told me that my upper and lower abdominal CT Scan, poo sample and blood results had all came back normal.

To me, that is instantly worrying. They’d done a chest CT too… I have bullous lung disease, or cystic lungs…clearly visible on a scan if any one looks at it. At stage four I have a heavy shadow on my right lung unavoidable to any eye let alone a trained eye of a radiographer.

As a patient being told that they can find nothing wrong when you are unable to sit down during the consultation is an unpleasant situation. I had no option but to have the poor consultant physically examine me. She would be sure to feel the rectroentrocele (or something) to show that I am not mental.

There is no understatement when I say it really fecking hurt.

Like last year at Watford General, it was very difficult and upsetting.

More painful was her finding something, checking with me that it hurt, and then pushing on it…the pressure made my heart flip and my ears pop. I tried to go through the wall on the other side of the bench to get away from her soul pressing finger.

The doctor handed me a wipe and some tissues. Getting dressed I wondered what she had found and how on earth I was going to get through Christmas in so much pain.

The doc has told me I am in pelvic spasm and given me some cream to use until I see her again early next year. I will let you know how it goes. I’m due to see her again in February 2021 – unless we are still in covid19 lockdown and it’s cancelled.

Thanks for reading.

Poor guy.https://www.researchgate.net/publication/51172093_Hemoperitoneum_as_severe_and_unusual_complication_in_the_stapler_recto-anopexy_for_hemorrhoidal_prolapse_Case_report

Adult, Disabled/Differently Abled, Ethics, Health, mesh, real pagans, right to healthcare, sex, womens rights

South African Women Be Careful

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We know the media do their own things these days and news isn’t what it was. The mesh scandal was quickly swallowed up by covid19 news here in the UK.

The TVT polypropylene – the vaginal sort. It is dangerous and pharma are now going to push it at other countries. In order to make you want it they may tell you it’s worked really well here, it hasn’t.

And I found this…

https://www.medicalbrief.co.za/archives/sa-specialists-argue-bladder-sling-surgery-despite-nice-ban-recommendation/
LIARS

The ban is in place for a reason. You are not being denied something that is good. It was not licenced in your country because it isn’t safe. PR companies will be writing articles saying how wonderful it is. Terms like ‘gold standard’ will be used and they will claim only a tiny percentage suffer side effects.

We have fought long and hard to be listened to in our countries. Many of us are maimed and more of us cannot have sex comfortably, if at all. Plus, we still have the wee problem.

The same firm who makes them, Johnson and Johnson, advertise constantly on our TVs to sell us the pads to clear up after our bladders. Ironic.

However, we organised, we’ve realised that many of us had untreated bugs in our bladder before the operations and that was partly responsible for the loss of control.

Rather than sort this out they claim it’s our physiological makeup and surgically attempt to fix us.

It is always down to the individual but a life without sex is pretty grim. The Gynaes here have dismissed us for decades with comment like “you can still do anal”. (Not everyone likes anal).

Stay safe and please do not believe everything the pharma tells you. Look to traditional methods.

There is an old surgical method which was used for centuries which doesn’t involve shoving plastic in your pelvic region. A couple of stitches in the right place. Could be done with cameras etc still. Do not let them put plastic inside you. It makes you feel ill.

Thanks for reading.

End of today’s rant.

Ehlers Danlos Syndrome, Health, home, mental health, mesh, right to healthcare, united kingdom

Nooooooo

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I was told in 2009 that my lungs would collapse in two years – so everything is gravy to me…

However, there are some things which happen in my life that, although terrible at face value may serve as a lesson of some sort to someone. This story is not for the faint hearted or the weak stomached. If you retch at the thought of poo, this true story will hurt so just stop reading.

I don’t want to be responsible for ruining your day. Don’t say I didn’t warn you.

Today is one of those days, the incident which happened a few hours ago is a life changing event. That is, I’m so grossed out I am having issues sharing. This is my reality and it’s VERY real so it’s happening.

Sharing helps me to come to terms with the adjustment of increasing disability and the loss I feel. Plus, you must laugh at yourself otherwise you are really lost to the dark side of life.

I awoke feeling knackered from a unrestorative sleep. I padded around the flat trying to stand up straight – this happens to all of us, eventually – and I let the dog out. I make my very weak coffee attend the bathroom, feed the dog, and watch some videos on YouTube.

It’s a slow morning. The weather is grey with streaks of light coming through, a beautiful, normal day.

Bruiser (the dog) has recently become a house guest (again) and we are getting on famously. He was sleeping on the floor when I got up to scribble something down – a popular pastime of mine – and I as I walked across the room, I let out some wind. Quite normal you’d think, although a little embarrassing.

However, a piece of poo flew out of me and down my trouser bottoms so fast, it hardly had time to register, before Bruiser jumped up and ate it. I managed to scream, “noooo”. But it was gone.

Two things.

One is that I’m mortified. The expelling of bowel contents without one’s prior knowledge is a shock. This could be because of the TVT mesh and Stapled Hemroidplexy which I stupidly agreed to. Regardless, this will take some getting used to.

The second is the dog. He ate my poo. He came up to me afterwards for a cuddle. ‘was not happening as I couldn’t look at him. I still can’t, if I’m honest lol. Will our relationship ever be the same?

It took me two hours to stop crying. Two hours. My top was drenched. I then started laughing. This could be the start of a symbolic relationship. I mean I pick up his poo and place it in a bag to bin it. Perhaps he could follow me around and clean up after me? It would save me a fortune in adult nappies (tears again).

I live in a built-up area and the law states one must do this ‘poo picking’. Most dog owners take this responsibility seriously but do not like to discuss it. It occurred to me that perhaps he is returning the favor? However, if this were the case surely, he could eat his own and save me the bother of picking it up at all?

Once I had stopped crying and made an appointment for the doctor, I thought I’d call my daughter and gross her out too… After all, it is a time of ‘sharing is caring’. I did prepare her, before telling her, but that didn’t stop her hand drawing up across her mouth in shock…

After retching some, she laughed and told me not to worry about it. Apparently, this was one of the reasons they had a lock on the babies’ nappy bin.

So, what does this teach us? It certainly has taught me not to rely on wind just being wind.

Thanks for reading.

Climate Change, Disabled/Differently Abled, Fossil Fuels, Health, mens rights, mesh, news, policy and allocation of funds in uk, politics, right to healthcare, united kingdom, womens rights

Johnson, Johnson And Johnson.

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https://www.theguardian.com/society/2017/dec/12/doctors-not-told-full-risk-vaginal-mesh-implants-bbc-panorama

The above article may be two years old but this is the same firm, Johnson & Johnson, our Government, led by Boris Johnson, has trusted to make the covid19 vaccine. The firm which tricked doctors and patients into accepting plastic polymer implants has been awarded more money.

https://www.dailymail.co.uk/news/article-8626619/UK-buys-potential-COVID-19-vaccines-J-J-Novavax.html

https://indianexpress.com/article/explained/covid-19-coronavirus-vaccine-update-october-14-6725217/

You could not make it up. Johnson & Johnson are a well known pharma company. They have a good name. They made it through marketing and advertising. My consultant, and others within the NHS, got monetary kickbacks from them for using their products.

The products were unsafe and many, myself included, are waiting for the complicated removal of their products to start. My surgery is continually and frustratingly postponed for one reason or another, time and time again. My recovery will take a long time once it actually starts.

The mesh, made from polypropylene, was not checked for engineering coefficients with the human body. It still hasn’t been. Yet, the medical profession are still using it to fix hernias. The current restrictions on pelvic implantation do not go far enough and the NHS decided against an outright ban.

Many mesh injury stories are not covered in the media. Thousands of men and women have been injured by this device first designed and marketed by Johnson & Johnson. Docs are using other mesh polymers like sticking plasters and ignoring the side effects. It’s a ticking time bomb.

The Government’s in bed with two of the biggest players on our globe. Pharma and Oil.

However, fossil fuel companies don’t want you looking at this 2.8 billion dollar plastic medical market in a bad light, it’s bad for investment. So, in a smoke and mirrors move, they fund the ‘clean the ocean of plastic’ campaign and use the media to attack drinking straws to tire you of the subject of plastic altogether. It works, I’m fed up of plastic talk.

TV and media is saturated with news stories of climate change and recycling written by paid PR.

The United Kingdom of the British Isles banned plastic drinking straws in England in April 2019. Yes, it is actually now illegal to buy or sell them here. I break the law regularly by asking people to bring some back with them when they go abroad…sshh.

It should be noted that no one has died as a direct result of an altercation with a plastic straw nor has any injury or damage been inflicted by one.

Zero straw companies have been taken to court for damages.

The same cannot be said for medical mesh.

The same cannot be said for Johnson & Johnson.

As a woman I’ve never felt so imprisoned. I was in medical lockdown for four years before the rest of the world was with covid19! Imprisoned by mesh and what it has done to my mobility and health.

Thanks to covid19; I am one among billions, locked safely in our homes, waiting with baited breath for news from doctors, from pharma companies and our governments.

Now my jailer’s are Johnson, Johnson & Johnson.

Obviously, with a J&J’s polymer device festering, painfully inside my abdomen I’m not going to feel great but what a slap in the face it was to hear that J & J received funding to make a covid19 vaccine after what they done to me.

Earlier this year Matt Hancock stood in front of cameras and apologised to me. He said the NHS and the government owe mesh victims a massive apology. And, then that was that. Forgive me, but that is not enough. No where near it. The fucking audacity of the man. I want this plastic shit out of me. I don’t think its too much to ask. I’ve been very patient.

“Money over morality.” That should really be the medical professions moto, or perhaps the more truthful, “Please be wary of us, we do harm” should be signposted outside every NHS Trust.

Before Johnson and Johnson are allowed to create more victims with these trials and tests on NHS patients for covid19 vaccines, surely some priority should be given to quantify and try to rectify the damage done to those of us already here through their other products?

How can a multinational company be allowed to operate against humanity and the planet’s environmental interests in the UK without any restriction? And how can they be given government funding after it’s be proven that they have done harm to patients by putting profits before safety?

Lots of questions and no answers for me. I just see all the greed and fully expect their gluttony will overcome them before any scruples will.

Ah, the drinking straws. Our gov banned them outright in such a short time regardless of the call from the disabled. It’s amazing what a so called democratic society’s government can do if they want.

They don’t want to look at plastics in medicine…it’s worth too much money. Banning the straws was a token gesture against plastic. Giving the money to J&J for the covid19 vaccine proves that NHS patients will continue to be the guinae pigs they have been for years.

What a shit show.

Thanks for reading…

Climate Change, Energy, Family, Fossil Fuels, Health, home, poem, real pagans, unextraordinarybint, united kingdom, writing

I’m The Problem? Poem.

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I throw away plastic but am unable to make it

I wear synthetic clothes that I am unable to weave

I eat food that comes in plastic packing as I cannot farm

I heat myself with a source of power that I do not produce

I’m told that plastic is bad, constantly by media

And I believe it…I have it within my body and hate it.

So, how about stop making it?

Only the fossil fuel industry can.

Why lecture me to throw away less plastics?

I will. As soon as there is a new plan.

End

By Samantha Unextraordinarybint Harris

Ethics, Health, mesh, poem, policy and allocation of funds in uk, real pagans, right to healthcare, womens rights

Bladder Pain Iron Claw – Poem

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Bladder Pain Iron Claw

Often asked to describe bladder pain
Pain is subjective
None is the same

Right now, this second, it feels like
I’m clamped in an iron claw
It holds me with a vice like grip
One pincher on my belly button sits
My pubic bone caught within
The pincher on the other side
Catches my buttocks and all that resides
Sits, tightly, thobbing painfully inside.

I can sit
I can stand
I can walk a bit
But, the vice is felt for every movement of it.

It feels like I have iron pants on
With screws at every side
Perhaps someone, somewhere
Has a voodoo doll of my hide.

The End.
By Samantha “unextraordinarybint” Harris. Written 24th September 2020. Watford, Herts. UK.

I have TVT bladder mesh. I’m awaiting removal…it’s a long road.

Climate Change, Disabled/Differently Abled, English Writing, Ethics, Fossil Fuels, Health, mens rights, mental health, mesh, news, poem, right to healthcare, sex, unextraordinarybint, united kingdom, womens rights

Caught In The Net – Poem

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Caught in the Net – Polypropylene Mesh

My anger today will not go away
It is so hard to live
Every movement a reminder of what they did

People assume choice

They only listen to their same voice

Paint me with the colours that they know

Advice to look outside

Oh, that wondrous place,

The one I would reside?

Have you ever considered it’s not my wish to hide?

In my mind I glide across the countryside

My feet barely touching meadows grass

As I breathe in deep of green and wooded forests

I jump the trickling streams,

Wandering in leafy, brambled, brackened dreams

I miss

That I can see but no longer touch

The things that I love so much

I close my eyes to remember the smells,

The feeling of air on my skin

The prickle of sweaty regret begins…

The anger wells inside, that stupid trust

On which I had relied…

Taken from the forest of extremes

Where humans do good things.

Yes, they took from me.

They’re crooks who take liberty.

From Thalidomide to HIV

Between the Witz family and the Public Health Authority

They maime us

They kill us

With impunity

In perpetuity

Because victims you will not see

The End

20th August 2020 by Samantha Harris (unextraordinarybint)

Disabled/Differently Abled, Family, Health, home, mesh, poem, unextraordinarybint, united kingdom

Mesh Days – Poem

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I hear the wind

It reminds me of outside

The outside I can see

But cannot be.

It reminds me of friends

Of times gone past

When I danced, socialized

And had a laugh.

 

I breathe in deeply

Try to remember the smells.

The greens, the scents, the stares, the charged air

Walking out in tottering shoes to forget my blues

Between trees, hedgerows and lamp posts

Listening to the cacophony

Query that I heard them at the time

Straining I hear them, I do not see them but

It’s not beyond memory in this history of mine.

 

I watch and check

My envy grows

Fairweather friends

That now I do not know

Their absence long adjusted to

Looking back, it’s what I would do.

 

Friends can’t deal with my selfish greed, my need to be ill.

I can suck the air out of a room in a moment with my sharp tongue

Thankful words stop where thought begun.

For this reason, I stay in bed

So, my evilness can’t be spread

Out of my heart and into my throat

One escape one moment and all would be lost

They would see mediocracy, at my cost.

Me

Not the graceful lady portrayed

But the evil woman, betrayed.

 

Pain and anger blow outside

Bash against my grace

The mirror shows lines

My heart feels the disgrace

I want to shout

Leave me alone, go find someone else

But, immediately feel guilty

Wishing this on someone else isn’t me

There’re no words where I could make people see

The simple truth is that mesh took my life away from me.

 

I’m listening out for different sounds.

I’ll explain it to you

The intercom will buzz, I’ll get a little excited pain because

My meals on wheels is due.

It will be delivered hot and appreciation I will show.

The meal will sit on the side all day and

Tomorrow into the bin will go.

 

The wind blows and gusts, howls past my block

Reminding me anew,

“Cheer up, smile, turn up the charm, there’s still some fight in you”

The slicing pain as I move reminds that I must attend

The sting, the pain, the wipe again, twenty or more times a day

Pain on pin movement, on moving legs this or that way.

Tedious as life could be

Breathe in, be calm, ground myself again.

The wind blows and the rain lashes against the pane.

 

My delusions tell me to “Eat like a bird.”

Wellbeing, they have never heard

What do you do when soul continues to grow?

When you feel wings trying to show?

I look at my dinner, that I managed to plate

There’s still warmth and nutrition

It’s not too late!

I put down my pen, I try again.

I choke on the food.

The tears fall down my face.

Well, that’s ingratitude,

And my hatred starts all over again, not displaced.

 

I stare out the window, searching for the sun.

Calm myself, ground myself

Breathe in the sounds that are near

Life continues outside, this brings me some cheer.

I force down some mouthfuls, with the aid of weak coffee and a smoke

Deal with my own wind and convince myself, I can cope.

 

The day suddenly gets better

A call from my daughter

Can she visit? Would I let her?

The smile that you can’t see is wider than the distance between you and me!

My granddaughter with her will come

And a better antidepressant there is none!

So goodbye dear misery, for today

My life just blew a wonderful way.

 

Ah, discomfort and pain slide insecurity in

Will she be upset that Nanny isn’t better yet?

Oh, delightfully we will play

A new pair of shoes she comes to show me today.

 

I wait eagerly, the knock the on door

To see her bright eyes, smiling as before

A cuddle and a greeting I will get

They haven’t invented a pill yet

That gives you the happiness of love

It’s paid for in heartache in the family abode

It comes back in spades when you least expect

Overwhelms me, yet,

I’ll never take love for granted

My loss had to be done but

Love given out cannot replace wrong

My disgrace is mine and mine alone.

 

I wait for the doorbell, I can hear the lift

I wonder if it who I think it is.

Soon I will hear her laughter

Soon I’ll hear her steps

Soon I’ll get a hug from the best granddaughter yet!

 

How soon the hours do fly past

One, two maybe more, it’s hard to tell

We had a blast

“I’ll miss you loads,” she says

As off to the lift she yells.

My daughter and my eyes do meet

An animated, chatter journey home, her treat.

I press the memory firmly to my heart,

Close the door with blown kisses,

Now, my lonely afternoon starts.

 

The end.

 

By Samantha unextraordinarybint Harris. Written 27th July 2020 at home in Watford, Herts. UK.

 

 

 

Health, lung and heart disease, mental health, mesh, poem, right to healthcare, unextraordinarybint, united kingdom, womens rights

Ashamed of Myself

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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/

Disabled/Differently Abled, Health, mesh, policy and allocation of funds in uk

Mesh, Not Counting the Costs.

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This week I attended the John Radcliffe Hospital in Oxford, England. I gratefully drove the hour or so there from my home in Watford, I queued for forty five minutes to gain entry into their car park and was awarded with an early consultation with surgical Gynaecologist, Dr Natalie Price.

Now, I had been warned that Doctor Price was pro mesh and wouldn’t remove mesh unless it was a private affair or patients meet the strict NHS removal criteria. This being that the plastic needs to be physically cutting through your organs in what is termed as ‘mesh erosion’ and the doctors need to be able to see it.

Knowing this and being an NHS patient I decided to arrive prepared. I entered my long awaited consultation armed with a statement of my patient journey. I also had all the letters which the statement alluded to. My aim was to show that since the TVT implantation I have had bladder pain and infection and that it has taken over my life.

I didn’t want to be accused to having just heard about mesh issues and was ‘jumping on the bandwagon’ because of media insurance claim cases. As I just want my life back and only have the NHS to help me I must tread carefully.

One of the major problems with the NHS Health Care System is that hospitals are not able to see what medical data another hospital has on you or view your GP notes. Patients have to give their own history and list what they have already had investigated within the fifteen minute time slot.

To save time during the consultation and to ensure I didn’t miss anything out (I was anxious and bound to babble) I listed the journey my bladder has already taken…it resembled War&Peace and was edited to the basics to ensure it could be read. I’ll put it at the end of this blog piece.

Of course to keep it simple I didn’t correlate it with my loss of earnings, social status, self esteem and emotional health. I didn’t even correlate it with change of professions to suit the illness as it’s progressed. I didn’t list the music I no longer play with my band. I didn’t list the boyfriends I’d lost because I couldn’t leave the house or ride them like I used to.

I also felt I shouldn’t mention the problems one has attempting to claim disability or the problems I’ve had finding a pad to wear that doesn’t cause outer cysts or how much the itching distracts me whenever I’m trying to have a conversation.

The additional pain in my legs or back was not mentioned as I know this could be attributed to other illnesses I have in Elhers Danlos – although I’m pretty sure that the numbness in my arms and legs will improve when I can walk again.

Tempted I didn’t add up the costs of all the medical intervention I’ve had to look into my bladder against them just admitting the TVT could be a problem at the start and giving me the colpolspension required. After all the TVT was preferred because it saved two hours surgery time…although already known to cause problems.

I couldn’t fault Dr Natalie Price. I liked her demeanour and her attempt to get me to measure my expectations of what could be done on the NHS. I wish I wasn’t poor. From what I understand it would cost in the region of £50,000 to have done privately.

Dr Price examined me and felt that I do have mesh erosion but it must be definite and she must convince the other surgeons that my life would be improved by having it removed as often a patient is ‘worse off’ after TVT removal. I asked her what ‘worse off ‘ would look like.  I realise that was unfair of me.

So, now more waiting for the wheels of the NHS to move to organise scans and another cystoscopy at Oxford for me.

For those of you reading this with no previous knowledge of TVT mesh it is a polypropylene plastic which is used instead of organic material in surgery.

Thanks for reading.

Below is long and boring list of the doctors and hospitals involved so far.

This is my current mesh journey:

May 2004 My Rheumatologist, Prof. Graham from University College Hospital London, wrote to Mr Hextal to request a colposuspension (regular operation used to help women with bladder prolapse, usually after childbirth).

August 2004 Mr Hextal performed cystoscopy (under General Anaesthesia) and laser treatment for endometriosis and to look at the inside of the bladder.

In April 2005 under General Anaesthesia a Hysterectomy was performed and TVT implanted by Mr Hextal at Watford General Hospital but is based at St Albans City Hospital. I woke up after surgery with a very tight sensation across my groin and complained. An ultrasound scan of my bladder was done on the ward before discharge, it showed incomplete emptying. I was given antibiotics and assured things would settle.

June 2005 At my follow up with Mr Hextal I saw a registrar who dismissed my pelvic pain, bladder pain and my assertion that my clitoris did not the same as it did by telling me, ‘It all looks very pretty down there.’ This made me suffer in silence for a while.

GP refers me as I keep getting urinary tract infections and blood in my urine.
February 2007  I see the urodynamic nurse under Mr Hextal at St. Albans City Hospital.
April 2007. I see gynaecology at St. Albans for bladder and groin pain, they suggest physiotherapy. I undertake physiotherapy.

My Rheumatologist writes to Mr Hextal asking for information on my Gynaecological operation because of my continued bladder and pelvic pain. Prof Graham doesn’t mince his words and suggests that the operation Mr Hextal has done has failed.

June 2007. I see gynaecology Mr Hextal St. Albans City Hospital and they suggest Soliferacin or Oxybutynin for continual bladder pain and difficulty in urinating. I continue with physiotherapy.

August 2008. I have cystoscopy under General Anaesthesia at Watford General Hospital to investigate the bladder pain and blood in my urine. Mr Hextal is unable to find the cause of my bladder pain or inflammation. I am put on antibiotics long term.

September 2008. I have scan of bladder US Urinary tract (for blood in urine and pain) –  I’m told that all is okay. GP tells me that I can be treated privately by a college who specialises in bladder complaints at the Spire Bushey Hospital.
GP refers me to Bushey Spire Hospital – Mrs M Rushton, bladder specialist.

January 2009 Cystoscopy and bladder massage to stop the bladder from being in spasm and calm it down, I was told this would relive the tension I felt – as my bladder had gotten into a ‘bad cycle’. This actually worked for months.

December 2009 – UTIs continue although still on antibiotics and bladder pain, problems with urination and more.

January 2010 Referred by GP to The Clementine Churchill Hospital in Harrow, London. I saw Dr Agarwal for bladder pain with blood in urine – only now no infection was being found. Another cystoscopy and bladder biopsy. Dr Agarwal diagnoses me with Interstitial Cystitis and gives me diet sheets to follow to help my symptoms.

Thankful to have some answers I followed the diet sheets religiously, but they do not help much, and symptoms continue.

September 2011. I have a scan of Abdomen and US transvaginal scan at Hillingdon – GP request because of constant UTIs, blood in urine and pelvic pain. I’m given Diazepam in attempt to calm the bladder down. I’m told everything is fine no cause of bladder pain.

February 2012 My GP referred me back to Mr Hextal at St. Albans City Hospital/Hemel Hempstead. 
However, at that time because I felt they were not listening to me, I asked to be referred elsewhere so GP referred me to Prof. Linda Cardozo MD at Kings College Hospital, London for bladder investigations.
August 2012 – November 2013
Prof. Linda Cardozo organised for me to have US transvaginal scans, physio, diet help and urodynamics tests. I saw a range of professionals and had a cystoscopy under General Anaesthetic and bladder biopsy.

The results can only be viewed with suspicion as Prof. Cardozo describes a  womb with no sign of mesh erosion. I cannot comment on whether she could see mesh erosion but I do know that a hysterectomy does remove the womb permanently.

No cause could be found for blood in urine or my bladder pain at Kings College Hospital. Although Specialist Physiotherapist, Janet O’Toole and the Urogynaecology Nurse Rose Orako both felt that my symptoms did not correlate with Interstitial Cystitis still no one mentioned that the mesh could be the problem.

April 2014 First cycle of Cyclic Vomiting Syndrome found me with antibiotic sensitive ecoli in my bladder on admission to Watford General hospital. Under the endocrine dept my bladder issues then became secondary to weight loss, jaw and ear pain, gout, rectum dysfunction and vomiting with major chest pain/lung disease. *I decide to take myself off the antibiotics – they weren’t helping me keep clear of infection and I needed to decrease my medication and opiate use.

March 2015. GP referred me back to The Clementine Churchill Hospital in Harrow to investigate ongoing bladder pain, blood in urine, outbreak of nasty cysts and insane outer vaginal itching with no cause. I was under the care of Mr Kamal Iskandar who was able to prescribe Lidocaine gel for the itching.

Unfortunately, I was found to be too poorly to be operated on at this hospital as they have no A&E and I was referred back to St Albans in November 2017 after another US transvaginal scan at request of GP in November 2015 and further UTIs.

I was released from Watford General to the care of University College Hospital London to investigate from March 2016 to Sept 2018 I was under Dr Natalia Zarate-Lopez. It was felt that my constipation could be contributing to my bladder issues. My bowel was  investigated, Dyssynergia and slow transit diagnosed and bowel retaining undertaken. Blood is found in my bowel movements and urine.

November 2017. Under Mr Hextal at St. Albans City Hospital I had more urodynamics tests under Nurse led Gynae Clinic. A cystoscopy under spinal anaesthetic, cyst removal and biopsy showed no real reason for bladder pain but again showed inflammation.

November 2018 Mr Hextal performed laparoscopy under spinal anaesthetic to check the TVT but no erosion could be seen of my bladder as the TVT couldn’t be seen, my ovaries had cysts on so he was able to operate on these.

April 2019 After an attempt at installations of medication directly into the bladder (very, very painful) and more urodynamic tests, at a consultation with Mr Hextal, I provided evidence that my Rheumatologist had requested another operation other than the TVT with the hysterectomy (back in 2004) and that the problems I’d had ever since could and should have been attributed to the TVT. Dr Hextal referred me to Oxford.

January 2020 Dr Natalie Price at the John Radcliffe Hospital in Oxford. To start investigations into the bladder issues I am having and will look into whether the mesh can now be removed.

 

https://secure.avaaz.org/en/community_petitions/World_Health_Organization_medical_devices_World_wide_inquiry_about_the_safety_of_medical_mesh/

 

Ethics, Fossil Fuels, Health, unextraordinarybint

Planting Plastic Rather Than Pigs. Article on Clinical Judgement/Religious Choice.

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There is a huge and growing problem in our healthcare systems. It is the same problem which is troubling our planet = plastic rubbish. Whilst plastic does have many great uses it often replaced other materials which did the job and had the benefit of not being bad for the planet.

So why did we change?

For support and information, a Facebook group called Slingthemesh has sprung up. Through that group the stories of humans dealing with this tragedy are heart-breaking. Bizarrely, one sentence is being continually said over and over by the surgeons as the reason for the mesh.

Following, in bold, italics, is the sentence.

“But they used to use pig skin.”

Mmmm not only pig skin, but hemp, cotton, flax …for hundreds of years, hundreds.

https://www.medibank.com.au/livebetter/be-magazine/wellbeing/the-history-of-the-suture/

It’s taken me far too long to realise that the surgical stitch, which was made from organic material, which worked, was changed to experimenting with different types of plastic stitches, mesh and skin grafts etc. for some reason…was it because using pigs are not kosher or Islamic? Or was it because plastic is another use for fossil fuels as plastics are derived from oil?  

Now let that sink in for a moment or two. I have faith the medical profession are here for our benefit…but if something isn’t broke why fix it. This is not a doctor or consultant bashing…I’ve realised you are just as ‘in the dark’ as patients.

It is not an overestimation to say that tens of thousand of humans have been maimed and are attempting to cope with the affects of plastic inside them. Some maybe still actually unaware, dealing with their pain alone, being told it’s nothing to do with the implants- perhaps even their doctors do not know their patients have been implanted.

https://www.newscientist.com/article/mg23931940-300-the-inside-story-of-the-vaginal-mesh-scandal-from-top-removal-surgeon/

Back in the 1990’s western medicine was at the top of its game regarding surgical procedures. They were using key hole surgery and looking at different ways to minimalize recovery times and improve outcomes for many patients.

The United Kingdom, Europe and America were doing great things in medicine and attempting to sell their expertise to other cultured countries in order to improve outcomes for more people across the globe.

Recently, they have had success – Kings College Hospital in Saudi Arabia, the sister hospital for the one in our own capital Kings College London – is a shining beacon of healthcare for Saudi Arabia. I’ve been able to find out how much the NHS is receiving for this hospital, but I hope it’s substantial.

This collaboration did not happen overnight. Such teamwork and sponsorship cannot be garnered so quickly. There are many obstacles and one of which must have been the use of pig skin as the Muslim faith – to which Saudi Arabia has much of its laws entwined with – forbids the use of pig. *I only use Muslims as an example as many religions have restrictions towards animal material see further down a full list.

It seems remarkable that a push towards plastic has been so severe in medical practises yet so hardened against so much in our normal daily use – look how fast plastic straws disappeared. When we want to and are motivated, we can achieve.

Yet my conversation with a gentleman this morning who is desperate to get his surgeon to use pig skin or cat gut for his stitches and hernia fix rather than plastic mesh and stitches again, makes me realise we are really up against a massive ignorance of the problems that plastic causes.

I feel that religion has been used to push plastics into us. Not by the religious people themselves, no, but by the Fossil Fuel companies because ultimately, they are the ones which profit…and one must always follow the money. Plastics come from Fossil Fuels.

This is a paper regarding a questionnaire asking about the use of animal materials in medical procedures. It is with concerned with all faiths and their hesitancy regarding certain materials. It should be noted that the conclusion did not consider that 100% of the participants agreed to religiously banned materials being used if their life depended on it…

The List.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4220589/

Conversations are happening in consultations involving people’s lives every hour of every day. At some point someone should say something…surely? There are law suits going on every day but the information is not being given to patients. I’m often concerned that the doctors and surgeons are not kept abreast of the negative impact of plastics they are recommending or insisting on.

Let’s be clear here, the plastic in medical devices industry is worth $33billion now a year. These are very important and influential companies.

However, shouldn’t non-religious people have a choice? You could argue that environmentalists should have something to say but often they include animal rights activists, so it becomes a more complicated issue. Personally I wasn’t given a choice and now face more surgery to remove the plastic. Along with others.

https://www.grandviewresearch.com/press-release/global-medical-plastics-market

https://www.drugwatch.com/manufacturers/johnson-and-johnson/ – This where J&J are called America’s most popular lawbreaker.

Our health, all of us, is reliant on our doctors and surgeons.

They in turn rely on the research – is it time for there to be a Government investigation into the use of plastics within our medical health providers? I think it is. And not one headed by industry lackeys.

In this historical time of transparency I feel that the end user – the patient – has a right to know they have plastic going into them and the real affects of that choice.

More research should be gathered from victims – there are thousands of us ready to tell our stories but the medical profession is deaf to us unless we are taking them to court but who wants to do that to the NHS? Informed consent should mean so.

https://www.medicalplasticsnews.com/news/medical-devices/mesh-devices-may-be-to-blame-for-autoimmune-symptoms/

Thank you for reading. I’d appreciate any comments on this, especially errors and mistakes.

Disabled/Differently Abled, English Writing, mesh, sex

Meshed, Mad and Horny.

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Fancy Someone and Disabled with Mesh? Me Too.

I have a smile on my face. I feel younger. I’m pretty sure it’s because I found I want to be close to someone. We’ll meet again soon and there will be no doubts, no strained small talk because I bit the bullet and straight up told him, I couldn’t get him off my mind.

It was a huge risk. I don’t like rejection, but he’d gone out of his way, just for me, so I had an idea I was putting feelings in the right place. Now, however I’m thinking that telling him was the easy bit. I’m thinking should I actually consider involving someone one in my misery.

Fantasy, of course, is one thing and reality another. When you embark on a new sexual relationship the ideal would be to do so in wild abandonment, to throw caution to the wind and let our bodies take us where they will. But already, I am worrying…

Several conflictions now in my mind. The least of which is the TVT mesh medical device implant. The mesh was put into me before the medical establishment really understood the female anatomy (2005) and sensations are hit and miss. This is hard to describe to doctors who just don’t understand female orgasm or its role. For instance, I told my gynae I had lost feeling in my rosebud and he said,

“Oh no, it’s fine. It all looks very pretty down there.”

There isn’t much you can really say to that is there? This is like only having a cheese knife for soup. You may decide you are not hungry after all. After many hospital appointments and different treatments, I’m now waiting a removal specialist although I am not on any list as a list doesn’t exist.

The manifestation of the mesh’s impact itself in my life is more than annoying and usually very painful. Imagine, if you could, having a piece of serrated tape threaded through your genitals to your spine and then back again. That is what the surgeons did to my poor fan.

There are days when I cannot think of anything else other than my groin. If I stand up straight, it pulls across my bladder, if I sit down it pulls across the top of my pubic bone. As I walk it, I feel it most, it moves in sawing motion through my insides and squeezes my bladder painfully.

The movement happens without me thinking about anything arousing so imagine that going on down there when sexy thoughts start. It’s tormenting. My brain is now on the desperate longing stage. I’m longing to smell him and touch the skin beneath his clothes. I want to lie in the smelly warmth of our mutual want and kiss every millimetre of his manly frame. I’d like to worship his essence…

So now I’m tending to shift around quite a bit in my seat, moving my weight from one side to another. I do this in an attempt to take the sensation away, just to give me a break from it. If it were a penis, I suspect it could be like having the life sucked out of you by someone with sharp teeth when you are also desperate for a pee. It may be nice at first but claws after a while and quickly becomes unbearable.

Whilst I am desperate to jump on my new adventure and ride to wonderland, I am also very aware that medically I’m not allowed to ride a bicycle let alone a man. Previously I’ve only been able to achieve unison in missionary position and disengagement was both dicey and painful. This plays on my mind.

Of course, I know, in my grown up, adult world, that I can discuss all this with my prospective lover. I know he will understand and be mindful of me. I do have faith we’ll find a way around my insecurities because intimacy does make me feel great. Life has few free pleasures. I’m determined to enjoy the flesh to flesh experience for what it is, joyful.

I’m determined to be close to another. I need and deserve it. Note to self, not to sound too desperate. I realise that someone permanently by my side, fighting my corner and supporting me is a fantasy, but a kiss and a cuddle isn’t too much to hope for. As a woman I need to feel wanted and needed…I believe men feel this need too. It is a human need and one I cannot live without.

Regardless of the emotional and physical pain I’m looking forward to getting to know my new lover. He has already given me hope and a real feeling of security by just being in my life. Yes, I’m still scared of what the future holds for me but now there is a slither of excitement running through my day and nights. Who wouldn’t want that?

This plastic mesh embedded in me, bleeding its carcinogenic poisons into my body, has taken so much from me I cannot allow it to take passion too. I think about the future scared but now there is something unknown, something enriching for me on my horizon. A man 😉

Disabled/Differently Abled, Equality, Health, mental health, policy and allocation of funds in uk, womens rights

Chastity 2019 NHS England Stylie

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The Tension Vaginal Tape or otherwise known as fashionablefaithgroups answer to chastity in the 21st century. How have these gynaecologist been allowed to get away with charity status and no taxes as well as damaging the patients?

I would like to applaud NHS England’s stand on chastity in the United Kingdom. It managed, without one protest, to stop thousands of women in the UK having sex.

Women on a ‘sex ban’ because of the TVT have no option but to conform. Their partners and themselves get damaged by intercourse. What kind of Government allows it’s healthcare service to do this to it’s women. This tape is torment, I hate mine, it stops me doing so many things, walking in th woods is very sorely missed.

What kind of Government would do this indeed. Perhaps a government which has been lining it’s pockets whilst in parliament rather than working for it’s constituents? This seems to be the unwritten law for politicians. Once in office they don’t do anything for normal folk.

Thousands of women have been fitted with TVT, men and women have suffered through the Starr program. These kind of experimental treatments is not what the NHS was supposed to be for. We should not have been used as lab rats for surgeries which had not been performed on humans before. It’s wrong. And now to belittle patients is worse.

What has happened the NHS??? When are the Government going to do something? DNA samples taken without permission, treatments given according to new and bizarre medical evidence. We are heading back towards the dark ages but will it end when we leave Europe or get worse?

I’m real scared it is going to get worse.

real pagans

NHS Magic – The Re-appearing Womb.

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The UK Government is denying there is a problem with their systems. I would suggest that it spends some time listening. Twenty years of pain and eleven operations to ‘investigate’ mysterious bladder pain, when they know it’s the system.

Disabled/Differently Abled, Health, lung and heart disease, mesh, policy and allocation of funds in uk, right to healthcare, unextraordinarybint, united kingdom, womens rights

Oh, I Could Strangle a Dolphin!

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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.