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.

No Better – Review Stapled Hemorrhoidopexy. Honest/Blunt.

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

South African Women Be Careful

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…

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.

Nooooooo

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.

About the New NHS Telephone Consultations…

Get comfy, this is not an exciting read. It’s personal and very boring. I have some good points, I think. It’s a hard time for many of us, if not all of us and those of us with mental health problems are finding it hard to get any kind of advice.

I have two people I trust. They both suggest different things. I am at a loss with this one. This isn’t about my mental health it’s about my physical health but it’s impact on my mind is tangible.

During the covid19 pandemic the NHS has been going ahead with the implementation of digital consultations. They have basically worked out that they don’t actually need to see the patients they can treat them on the phone or by email.

Why have actual patients at all really? Just use our NHS numbers and bill the Trust anyhow? I feel like a used car being bumped between garages until my red warning light goes on. I hope to God that not everybody’s care is like mine.

I have had several of these ‘consultations’ now and quite frankly they could be better and feel like they are a waste of my time – they could be useful but unless doctors do them properly there is no point other than the pay load for the doctor or getting medicines prescribed ( I appreciated that when I had a virus in my eyes in the Spring).

One of my conditions is lung disease…it was diagnosed in my late thirties by a shadow on the lung seen on an x ray taken at Watford General in 2009 but I’d been suffering with vomiting, fainting, and heavy mucous and digestive problems since seven years old, intermittently.

I got diagnosed when I was sent private to the BMI Harrow 2008 for my bladder and they saw cysts throughout my other organs. I told my GP and then I was sent for the chest x-ray as my rib cage, at the back, hurt. I had a large lipoma there and it was removed in case it was causing pain, but it was nothing sinister and the pain persisted.

My NHS treatment has been reasonable. I was attending a Watford General clinic, their Thoracic department of Respiratory Medicine every six months to see a doctor there called Flip (not real name). They’ve done some gas exchange tests and learnt I’ve around one third of my lung capacity left but that was some years ago.

Flip is nice and friendly but not very attentive to my condition and wellbeing…like he does seem to care but often forgets he has seen me. He has twice written to my GP saying I didn’t turn up for clinic when I had.

I always have someone with me. So, it was all witnessed that I had attended, I’ve never missed an appointment with him but have several letters saying so. So, he seems like a good doctor but old and perhaps a little distracted generally? He’s very likable.

We are in the middle of a pandemic with Covid19 so my appointment for the end of September this year was cancelled, by letter, from the Thoracic dept. at Watford General. I didn’t mind. Nothing can be done for me, so it is just me and the doc touching base so to speak. He has seen me go through many changes over the last decade.

It was surprised when I got a call from a consultant based at another hospital. She introduced herself as Dr Thingmabob (not her real name) based at St Mary’s, London. She knew all about me and obviously had my notes so although I should have questioned why my case had been moved to her, I didn’t. I think I was in shock as I wasn’t expecting the call. I assume it’s because of the pandemic.

It is a queer thing though. I get frightened when they move me about. I worry that they’ve lost me or will get me muddled with someone else. I have previously complained about the A & E dept. at Watford General denying that they had a Thoracic medicine dept.

The staff told me it was all in my head as there was no record of my chest condition in my notes and no respiratory dept. at their hospital in April 2019. I digress. All this stuff does not help. Unfortunately, there is another Samantha Harris with my date of birth living in my town. Poor woman, we actually worked at the same David Lloyd gym once. I wonder if she suffers from being confused with me.

Doctor Thingamabob was friendly but didn’t do the basics. She didn’t ask after my health or current medication. It has been one year since I last saw the service. Where did she get her information on me from? Her main interest seemed to be to get me to stop taking HRT.

A lot happens in a year. Should Doctors be making decisions on old notes they have from ‘lord knows’ before calling the patient? They ought to know how bad the NHS computer system is at collating the information on one particular patient. They use it every day.

I told her I had already stopped taking HRT. It had been advised by the breast cancer clinic after getting breast pain diagnosed as cysts seen with breast scan taken at St Albans City Hospital in early 2019 – part of West Herts Hospitals NHS Trust – should be on my notes too…I’m not sure what she can see.

Dr Thingamabob was not going to listen to me…she continued to tell me that HRT makes my lung condition worse. I told her I’d stopped taking the hormones over ten months ago. I thought that she had finally accepted this when she asked me if I had any daughters. (YEP)

We spoke a little about my daughter’s lung issues although she never asked about my daughter’s gynae issues or I could I have told her she has polycystic ovaries. Digressing, sorry. But if this was her interest than surely this be an obvious path of questioning?

I brought her back to my case by questioning her about the three different diagnosis’s I had for my lungs over the years. I pointed out that docs said cysts in my lungs at BMI Harrow, but it was changed to Bullous Lungs at Watford then to Emphysema last year, as I told the consultant I’d started smoking.

Whilst on the phone she said that she was reviewing my CT scan of my lungs and said that it was cysts, and she would like me to have a blood test for LAM as that too can be make worse by HRT. I told her again I was no longer on HRT – I was getting a little annoyed at this obsession with HRT. We said goodbye to each other, and I put down the phone thinking ‘what was that?’.

I should point out usually my blood pressure and weight are taken by the clinic. These are obviously not able to be taken on the phone so she couldn’t see I am still losing weight. I still have the cough which I mentioned to Flip last year when I saw him. It is now very annoying and hard to go anywhere as everyone stares at me. Bloody covid19!

Being that I’ve had my cough since April 2019 it’s more than likely a ‘smokers cough’. It is a very embarrassing thing to have right now. It would be really nice to have a course of steroids or antibiotics to get rid, but it will never happen…or even better to be able to give up smoking without it hurting too much or making my MVP jump.

Oh, I’m very cynical. I’m thankful to have found the acetylcysteine and use it whenever the lungs are really congested. Thank you, Amazon International. I’m thankful for the mugwort which I SMOKE as well as drink as a tea. These things have genuinely helped me.

In my country it’s illegal to get acetylcysteine without NHS prescription and it is not licenced for use with lung conditions. It is not possible to buy steroids or antibiotics or antivirals from the chemist without a GP prescription. Many people look at our system and think it’s great. It’s not. It’s a denial of medical health products and being at the mercy of selfish doctors.

The consultation was pleasant. I mentioned to my daughter that the consultant was very interested in her lungs, more than mine as she still has a womb. Then I forgot it. At the beginning of this week I got a letter from the consultant headed up from West Herts Hospitals NHS Trust…not from St. Mary’s.

The letter tells my GP that she would like me to have this LAM test as I’m on HRT and it will be making my condition worse. She also put in a blood test form which requests the VEGF Ab Test and scrawls across it ‘send it out if needed’ as she doesn’t know if the hospital has the test facility.

There is something else which she has done that confused me. She writes, within the letter, that she has reviewed my CT abdomen scan and notes it is free of cysts on the kidneys…

As she didn’t do this (looking at the scan) on the phone to me, I’ve no idea which CT abdomen scan she is referring to. However, I’m pleased that she notified my GP of the absence. It seems unlikely that I have LAM because of this statement.

Being that she states, in the letter, that the LAM test is needed as it is ‘relevant because she is on HRT’, one has to wonder how relevant the test is because that I am NOT.

I have mental health issues. I’m finding it harder and harder to trust the medical services. There is no cure for LAM, and should the test be positive I would need to transfer to Nottingham to attend a LAM clinic – it says so in the letter. That is extremely far.

I’m very tired, fed up and in an increasing amount of pain with my groin and this fecking TVT mesh. Yep my chest does hurts, I’m air hungry constantly and I’m coughing. It doesn’t take a genius to know I’ve got a bad set of lungs.

And, yes, I have had a cough for over a year and am I’m in so much pain that I cannot rest my arms against my torso and have been for over a decade this is not mentioned on any letter. It’s frustrating.

However, the NHS treatments have historically been different inhalers and contraptions for delivering medicine into the lungs. They tend to make it worse or have side effects which I cannot live with. I’m never sure what the medicines are supposed to do.

One crushing, swirling capsule gadget made my throat so sore I could barely speak (and I like to sing). Also, singing is good for the lungs. And to be encouraged. Yet, as there was no follow up to report on my usage of the medication, do they know this. How could they? It’s also such a waste.

I now have this part of the letter here which I will write word for word what she has put under diagnosis. This is a therapeutic process for me to decide whether I go for the LAM test.

Diagnosis:

  1. Previously labelled cystic lung disease with some upper cystic changes and overlap emphysema
  2. Ongoing smoker
  3. History of Ehlers Danlos syndrome – type 3 with persistent chest pains, breathlessness.
  4. On HRT (post-menopausal syndrome) but of concern if LAM present.
  5. Cyclical vomiting syndrome.

No mention of my groin issues with the TVT mesh or Stapled rectum operations…note this is very common in my communications with hospitals. They choose what they wish to note, ignore what they do not want to note, or what they are not interested in.

If she’d asked me, I could have told her I still cannot sit down comfortably and am on fentanyl pain patches and that these help with the ongoing rib/chest pain too. The night sweats are still very bad.

Which to me, makes any cohort study I may be included in, invalid as our notes are made up of bits of information not the whole story. What is relevant or not is only admissible if the doctor can see it or asks the patient what their symptoms are and lists them in the follow up letter.

Not listed, not suffering from…

It should be also be noted that I have a crossover type of EDS with classical features. My collagen is not normal. However, it is the persistent pain and breathlessness being listed under EDS rather than the lung condition which is curious.

EDS has dislocated my joints and been responsible for persistent pain in my feet, hands and joints generally since I was fifteen years old. I also have Gout in both big toes upon walking or movement.

Also, unknown, to this doctor, as she didn’t ask, I’ve not had an episode of Cyclical vomiting since I started a new medication called Cyclizine whenever the nausea starts. It’s been great. Almost six months. This was a GP intervention and has stopped the visits from the nurse completely.

It’s worrying isn’t it?

What kind of consultation is it when the doc is only interested in their agenda?

If anyone did actually read this far, thanks. Any advice appreciated.

In my heart of hearts, I don’t want the blood test, if I’m honest, – as I don’t see the point (and the hospital don’t do it so I would need to believe that WG would send it on somewhere). I assume I have to have the blood test at Watford General as there is no information in the letter regarding this.

I have my groin to deal with. Preferring to keep trips outside, drama and fuss at a minimum makes things easier for me and is helping me to cope…this isn’t helping, thinking I’ll have to travel hundreds of miles to see someone for an hour and then go again. I already have to travel hundreds of miles to see someone about the mesh removal.

However, I have mental health issues and trust is a massive factor in this. Am I being stupid?

I researched the doctor and I kid you not when I tell you she is listed at almost every hospital NHS and private hospital in the area as a respiratory consultant apart from at Watford General. Why did they tell me it was cancelled and then this doc call? Why was she so intent on making me come off HRT? Is this the way all consultations are going to go now?

Why didn’t she ask me how I was and what medication I was on now?

Do I go for the LAM test?

Will it go against me, for future treatment or consultations, if I don’t?

Thanks for reading.

Johnson, Johnson And Johnson.

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…

The Menopause – Blunt Adult View

Menopause – What is the point? This article is my personal relationship view and own body issues with ‘the change’ and I will talk about how it makes me feel sexually, emotionally, physically and mentally. I am going to discuss my fantasy sex life so if you are easily offended you shouldn’t read.

The list of ‘side effects’ which are linked to the menopause are bordering on stupid and could go on for pages so I’m going to concentrate on the main ones which affect me, mainly, of sexual appetite, sexual performance, foggy thoughts, hot flashes and night sweats

How many women go through the change without so called side effects? And can we really call them side effects when it is evident, they happen most of the time?

I’m fifty-one and have been going through the change now for four or five years.

It started, for me, with vomiting. Constant vomiting. I had that for two years.

It was then noted that my ovaries had probably shut down my womb had been previously removed so I didn’t have periods to stop and I was put on HRT.

I was on HRT for two years until I started getting breasts cysts and then advised to come off the HRT by the breast cancer clinic. My symptoms returned almost immediately. My concentrated work flow decreased. My anxiety increased. But the breast cysts did go…

The night sweats have returned with vengeance. The hot flashes and flushes are a real bind too. I now have Cyclizine on prescription for the nausea.

I got to thinking about the purpose of these hot flashes and flushes. The human body doesn’t generally do things unless they are necessary.

Why do millions of women still suffer from these things and would there be an evolutionary reason as to why these two symptoms, especially, are so prominent.

For myself I have not really lost my sex drive, but I have lost the ability to have the energy to do anything about it. In my fantasy head I’m attending the local dogging site regularly and doing trains of men one after the other.

The men I fantasise about are generally strangers. They are usually imagined as overweight and possessing small penises that cum quickly. I fantasise that I am filled with their cum and they are queuing to do me. Then perhaps there is a clean up guy who licks me until I cum then I’m open for business again attending my queue.

Gang bangs were never my thing and I’m pretty sure I wouldn’t want the reality as some guy with a huge cock who takes ages is bound to join the queue and my pain level would interfere with the pleasure journey. Be assured that Grannie is not about to go dogging.

I have a TVT which makes certain types of intercourse and sex very painful. The fact that the mesh interferes with my fantasy sex life as well as my actual sex life is sad and something perhaps one day the medical profession could look into? However, for the moment, this is the sex life that I have. One where I am wanting and unable to scratch.

Hot flashes. A sudden hot feeling from head to toe. This makes me feel ill and like I am about to pass out unless I completely get naked. I literally have to strip off every time it happens so that I don’t pass out (I have mitral valve of the heart). I live and work from home and live alone so this is not a problem – unless a neighbour calls without phoning!

Evolutionally, it feels like my ovaries are making themselves known and felt, like they are screaming “hey we’re still here, we’re still useful, come and fertilise us!” My skin is bright red like a beetroot so kind of ‘beacon like’. Red is usually a sex switch colour in mammals after all.

The same could be said for the flushes, full on sweat from head to toe. They happen mainly at night time for me. A time when people are thinking about love (and sleep). The moistness wakes me up. I’ve often perspired from head to toe and the bed sheets are drenched, the duvet is drenched, and the pillows and mattress are drenched. Again, the only way out is to get completely naked and uncover myself.

In order to get back to sleep I have a system of towels, dry blankets and a dry sofa which help me get through each night.

Not the environment for a sexual relationship but I do feel incredibly horny whilst sweating…

Trying to find any research is remarkably hard. Afterall I am a woman and all women go through the change so why isn’t there any research? We are half of the world’s total population at any one time. Why are these things called side effects? Surely, they are just effects of the change?

Also, why is it a blanket HRT treatment with zero look at what is actually lacking hormone wise? Transgender patients get a better service from the National Health Service. Women who still want to feel like themselves are the bottom of the pile it seems.

I’d love to know if other women are horny like me or if perhaps this is a side effect of the TVT? Everything I read tells me I should be getting drier down there…not so. Everything I read tells me that my sex drive will lessen…. not so. So, what is going on?

From the male’s point of view sexually a woman who has gone through the change can have sex without a condom and without fear of getting pregnant but why would women still want to have sex when they can longer get pregnant? Does this mean that women’s sexual organs are useful and necessary beyond the child rearing? Is this why it is denied constantly? Or am I a ‘one off’…?

As a woman gets older the vagina gets narrower. It can often get less wet, perhaps this is why I fantasise about lots of cum, as it would lubricate proceedings…? However, I’m still as wet as I was when I was a teenager, so I don’t fantasise about cum because I need it to lubricate…it’s more than that, much more primal. The cum represents ‘want’.

For me, I do not like a big cock or even the thought of a big cock (remember I don’t have a womb). I don’t need it and it is the sperm which excites me. The feeling of being wanted so much a man is willing to give me his life juice, men cumming super-fast is more exciting as it means he couldn’t control his want for me (in my fantasy).

This is probably the reason so many women join dating sites for an ego stroke and then leave. Women, well I certainly do, need to feel wanted. If my man isn’t dry humping me at every opportunity, I think he’s looking elsewhere.

This leads me to the emotional side of not being fertile. Knowing younger women have more to give, are more beautiful and youthful and that I am going into ‘crone’ stage is depressing. Many of us adopt the name ‘Grandma’ during this period of our lives and the change is more than physical. I’m not a bitter crone but many of my friends are and I cannot bare their company as they sit bitching about those younger. I stay in, a lot.

I spend the day (when I’m not ripping my clothes off) thinking about men and trying to remember what I was doing. I’m writing three books, all on the same fictional theme, and the organisational skills necessary are complicated and unique to my project. I get so confused that I have weeks between being able to write anything conjoined. Choosing to concentrate on shorter easier to accomplish articles seems to be how I cope. I need to feel productive.

Creative frustration is the outcome. I can create constantly, I do but much remains unpublished as it is ‘Bernard Manning Style’ poetry, angry and personal. It is not the complicated building of characters and chapters towards my books…my future, my way out of my TVT situation. I need money to get the removal and recovery treatment. So, not being able to be as productive as I was is an internal torment.

Piles of unpublishable material, ideas for the books, chapters and bits of the storyline for the books lie in different places around the flat, on different formats, laptops, books scraps of paper and every time I go to collate them, I freeze. I often think I need a manager, but I cannot afford a manager. I need myself as I was but that is not possible. That person has gone but her ambition still remains.

Alarms are needed for my memory. If I place something in the oven or start running a bath, I must also grab the digital alarm, put a time upon it and take it with me in my pocket or near where I am settled. This way when the alarm goes off and/ or forget it I will eventually realise that I have the alarm on me for a reason and go and investigate why I have it. This system helps me hugely as before I was always burning my dinner and overrunning the bath.

It is certainly motivation and management for long tasks that I struggle with most. Procrastination is obviously the problem but that comes from fear of failure and I don’t fear failure I am confident, so this frustrates me more and possibly adds to the brain fog as it adds to my anxiousness.

I am considering looking for another lover and am wondering how to word the advert to avoid the obvious physical properties. Something along the lines of Menopausal Woman Needs Man with High Libido and Small Cock would do but seems a little forward for Grandma.

Thanks for reading.

Bladder Pain Iron Claw – Poem

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.

Caught In The Net – Poem

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)

Mesh Days – Poem

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.

 

 

 

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/

Recovered To Discover The World on Lockdown Because of CoVid19

Blimey gov!!! What on earth happened? I get a little sick and then come out of hibernation to discover the rest of the world has gone into hibernation for their health.

It seems that the corona virus has taken the whole world by storm and we will be feeling the affects one way or another for some time. I’d like to say welcome to my world…but I wouldn’t really mean it. My world is hard. As you will soon see, staying at home all the time isn’t all that great.

Bored…? You have no idea. But perhaps you have. Regardless, this is my little rant and moan about my own personal situation over the last couple of months which stopped me from really blogging. I did do something productive but I’ll share that another time.

In December 2019/January 2020 I got what my GP called a nova virus…I was vomiting, with a high temperature, sore throat and had problems breathing with pain in my chest. I was prescribed antibiotics but was unable to take them as the ones the GP had prescribed were a type I was allergic too and I decided to ride it out.

Just left with a cough and chest pain I then carried on going to my hospital appointments. I had some terrible urodynamic tests at Oxford’s John Radcliffe hospital. They are looking into my TVT mesh bladder and groin problems. The nature of the tests gave me a bladder infection which I was trying to fight off without antibiotics.

At around the same time my gout started playing up in my toes and my GP put me on Allopurinol. However, the pain increased into my left hip and leg..so the GP gave me Naproxen.  I felt worse and eventually started vomiting again with increased chest pain and bladder pain.

After days of vomiting,  a district nurse came out to give me an anti-sickness jab – unfortunately it had to go into the painful hip. In the nurses defence I don’t have any other site other than my buttocks where there is enough flesh to jab without hitting bone. Perhaps I should have forgone the injection as I continued to vomit regardless.

Then I came out in a small but nasty looking rash over the injection site. It was red and raised and very painful. It was diagnosed as Shingles by a GP the next working day.

There is a known reaction to the drug Allopurinol. It’s called an Allopurinol rash…it mainly affects black and south asian people according to the pharma leaflet. It is a red rash which blisters and can go over the eyes. Apparently docs should be careful giving it to people with immune response problems. However, I am white with Ehlers Danlos and mesh immune issues which are denied by NHS so Shingles it is.

The rash was just on my left buttock. It blistered within 48 hours. I was started on anti viral medication that day – to which I am very thankful for. The next day a rash appeared over my right eye and gave me trouble for a few days. The GP called me and explained that should it get worse I would have to go into hospital…I made up my mind not to call the GP again.

There was two days when my sight was blurred and I admit to be slightly worried but I sat in darkness and didn’t do anything too stressful on the eyes to rest them.

Last week it cleared up enough for me to think about restocking my empty kitchen…as having shingles in my eye I wasn’t allowed out or have any vulnerable visitors. I generally do all my shopping online as I am a wheelchair user and find shopping very difficult, especially when you have a lot to get.

I head to my trusty Sainsbury’s grocery online account…there are no delivery slots. I complained and asked what the purpose of my delivery pass at £20 a month was.

Sainsbury’s responded to me and said I would be able to shop today… as I was to be given priority…only when I attempted to do this it wasn’t possible and the helpline just told me it’s too busy to help.

This is a shame as I not only do my shopping online but I also do my neighbour’s, who is also disabled and housebound. I wasn’t concerned too much but now I am starting to get concerned. There is much lip service to disabled people but I can see no actual help or assistance.

On top of this I have to get my PIP form into the government this week – the government is looking to stop my disabled payments. Although it’s not due to run out until June they wanted to know in January if anything had changed….I was too ill to fill it in then so I asked for an extension…then I got shingles…now I’m out of time.

I’ve checked online and they’ve (gov) said they really need this form so I’m hoping someone will be able to pop it in the post for me as I’m supposed to stay in…you’d think the government would give disabled people a break during a time like this and allow us to photograph it and send it via email or do it over the phone but no.

So here we are. The grandchildren are sill poorly and both still on cough suppressants. My daughter has been diagnosed with pleurisy but is a healthcare worker so is already back at work after five days off. They didn’t test any of us for anything.

Good luck to everyone, especially those caring for the sick or keeping the country they live in running in another way, I salute you, and I hope to be back writing, regular like, soon.

 

 

Mesh, Not Counting the Costs.

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/