When you get fed up and email Mr Bojo Joh... - Endometriosis UK

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When you get fed up and email Mr Bojo Johnson 🤣

Heloo85 profile image
14 Replies

Mr Johnson,

I’m writing this email in sheer disgust with our NHS and it’s massive failings, that will no doubt, impact the rest of my life!

You see, I have a severe chronic disease called Endometriosis, which left me on 3 monthly follow-ups for the last 4-5 years, with absolutely no point whatsoever, as my consultant LIED to me, and told me my scans were all good, when they wasn’t.

So for 4 years, suffering severe sciatica, struggling to hold down my part time job, because I couldn’t walk. I went to the Drs time and time again! Everyday for 4 years I had to grit my teeth through pain, all while thinking it couldn’t be my Endometriosis because, you see, my scans were clear? Actually, they wasn’t! I was just about to be signed off onto 6 monthly consultations as I’d been fobbed off to ‘pain clinic’ that did absolutely nothing!

Last year my health took a serious decline! I was losing weight for no reason, plagued by rashes and that continued until November when I was hospitalised with Sepsis! I had a Tuba-Ovarian-Abscess! Well actually an Ovarian Abscess because I have no Fallopian Tube on the left side! I was hospitalised in one of your dire hospitals, called Airedale! I spent 5 days on IV antibiotics/fluids and eventually, on someone’s order, 2 weeks of antibiotics, with the notion that I was scanned at 6 week(?) to make sure the infection had gone, meaning if it hadn’t, I would ultimately go 4 weeks with no antibiotics with a severe bacterial infection(?). Funny enough, it hadn’t, my abscess was still on ultrasound come Feb/March 2021, but we’ll get to that as this is a very long and very true story.

My GP at this point did, thankfully, extend my antibiotics by a couple of weeks! Then blank refused more!

So I decided to stay with my consultant in Burnley (BSGE Endometriosis Centre) as I knew I had bowel involvement! You see, when you have bowel involvement and severe Endo, you have to be under BSGE!

So I contacted my consultants secretary around 2 December 2020, the day I was released from hospital, to find out he was off sick, but not to worry, I would go under one of his team members(?). Well things went from bad to worse, they did nothing! I soon passed my 6 weeks rescan date, and eventually got an appointment with this excuse my french, sh*t consultant, who told me, I had had an STI and I now have no mass, or infection(?)

My abscess was a very complex cyst that had abscessed!

So, thinking I’d just had an STI, put me through for a non urgent ultrasound, meaning I would’ve had to wait a further 6 weeks on top of the 6 weeks I’d already waited(?). At this point I was battling anorexia, pain, night sweats, nausea, very unwell!

My pain ramped up that week to pre hospital admission so I phoned my consultant who was now back for antibiotics to be told ‘I did not have a mass or an infection’ because that sh*t Dr I saw a few days earlier had told him so! At this point we are now in Feb 2021! I told him to send me to GAU, who thankfully accepted my request for an appointment. They scanned me there and then, and although smaller, my ovary was still abscessed! I was given antibiotics and tests for cancer, and referred straight to MDT! I was then told I needed a hysterectomy and removal of the ovary, but first I must go for an MRI! Which I did in March.

In hospital November my ovary measured around 5x6cm

Complicated Cyst, Abscessed.

In Feb my ovary measured 3.5cm

Complex Cyst, Abscessed

In March after MRI I was told it was 3cm, and if there ‘was any residual infection I would need a colostomy, because the bowel wall will go with it at surgery). I was put onto Zoladex and just left to get on with it, until they could be arsed to deal with it! Great! Zoladex is a chemical menopause.

So, tmi, but this is exactly what happened, I had a period and become increasing unwell again, losing more weight, more rashes, more pain, no relief, and definitely not better! At this point my GP surgery had already told me to go away, as was messaging to much(?), so I phoned the consultants secretary, and got told I could have HRT(?).

I used common sense and obtained antibiotics by means I won’t discuss, but thankfully, saved my own life!

Like things couldn’t get any worse, after stopping the antibiotics again, all the symptoms quickly returned and worsened!

Plagued with rashes, anorexia, nausea, vomiting, serious faecal impactions, insomnia, night sweats, pain, fatigue which has gone on now on/off for 7 months. No help from GP, other than trying to make out I was just depressed, I secured and paid for a private ultrasound! It turns out, since March, my last MRI, which showed my ovary at 3cm, well it now stands at 2.6cm, meaning it’s lost almost 4mm in size!

A healthy ovary should be 3cm minimum! Mine is far from ‘healthy’ and in fact has now started to calcify! My worry now is that the long-standing infection has now killed my ovary!

I have now, once again, contacted my sh*t GP and sent them the images and I await what they have to say!

I have been tormented for 7 whole months! Refused treatment, refused scans and just been fobbed off with ‘you’re just depressed’. Hopefully my ovary isn’t dying inside of me, or it will mean I am still battling a deadly situation!

If you could respond, I’d be grateful! Because I could’ve easily have died at any point in the last 7 months! And no doubt how much damage this is going to leave me with!

Thanking You

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Heloo85 profile image
Heloo85
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14 Replies
angiecxx profile image
angiecxx

Omg that's absolutely horrendous what you have been through and still are going through!!! You poor thing no wonder you have had a good old rant about it i would too. You definitely definitely need to complain though the proper procedure about your gp and the consultants. Do not let this lie. You keep going until you get the outcome you clearly deserve. Your gp should be ashamed of themselves for treating you so badly. I hope you start to feel a little better soon. Sending you hugs 💛💛x

Heloo85 profile image
Heloo85 in reply to angiecxx

We should all start complaining, maybe then the NHS will stop fobbing people off and start dealing with problems!

I’ll be going to the papers after it’s all finished with! I will be highlighting the struggles women face! We literally have the pee taken out of us! Fobbed off, told it’s all in our heads, it’s normal, go away! Pfft! Had enough! And my GPs have been informed about how unhappy I am with their service! I will never believe a medical ‘professional’ again! Xx

Bethleah profile image
Bethleah

Hi. Let us know how you get on pls. It may be worth putting in individual complaints for each ar****le you have been treated (or not treated) by instead of one complaint. I would also check out Moon Maidens posts as she has complained and may be able to give you some tips. Maybe consider writing to your MP as they have a duty to look into issues they are contacted about ( may depend on who your MP is). You’ll probably get cr** about it’s the covid crisis fault etc. Someone should write a book on how to successfully complain to the nhs. It may be worth talking to a medical lawyer rather ones who take on cases where the nhs has misdiagnosed etc. A lot to think about especially when you are so ill. Good luck xx

Moon_maiden profile image
Moon_maiden

Where did you get the email from. Let us know if you get a response. This is such a horrendous situation. It’s unbelievable that in this day and age the condition is ignored.

🤞

I told GP surgery I’d fill in their form everyday, they referred to another centre who are going to organise MRI, but I think the other consultant has spoken to them. I’ve requested copies of notes since January. But I know they’ve had info, ICO potentially.

CQC pretty sure they’ve contacted hospital who did hysterectomy. There is no getting away from no notes.

🤞 and let us know when you get a response

My crystal ball (kidding) tells me I’ll get some dates for the meeting this week as I saw the other consultant last week. 😂

Heloo85 profile image
Heloo85 in reply to Moon_maiden

boris.johnson.mp@parliament.uk

Get emailing away 🤣! I think everyone should! Why should our lives be made hell because of some idiots that get paid huge amounts of money to do sweet.fa!

I am fuming! I am in pain! I feel sick! Ugh!

Xx

MagicTea profile image
MagicTea

Have you completed the survey run by the dept for health? They’re asking for feedback on women’s health, you could put all this on there. So sorry you’re going though this, it’s almost like a lottery depending where you live is how quick you’re treated!

Jasmin24 profile image
Jasmin24

My heart goes out to you!Stick in a complaint about your GP, lots of ways you can do that. I have been given lots of links by my current GP who I have also complained about. I would also change GP, get all referrals you need done, then more GP

This is my 3rd GP at the moment.

I'm also writing a letter of complaint about my treatment in hospital, while I was admitted in December for adverse reaction, my arrogant consultant, the lies told in notes I can go on an on, practically about every single failure in my treatment. One of the members on this site mentioned writing to the CQC, which I am, as well as the MP, Health ombudsman, anyone that will listen.

I think enough is enough, we have all received no great treatment from our consultants, GP...it needs to change!

I'm forcing myself to go back to work on a phase return until I get a op date, at Birmingham bsge hospital.

Anyways wish you the best, I do hope you get a reply!

Keep us all informed! 😊

Moon_maiden profile image
Moon_maiden in reply to Jasmin24

I did the CQC recently, I think it’s that which prompted the call from complaints to ask if I wanted a meeting with gynae and head of department 😆 if they think they can ‘placate’ me they are wrong 😂As good a surgeon as he is, I’ve completely flummoxed him with my complaint. They aren’t bad people just need a bit of realism of what the patient is dealing with. I did tell them what I’d do.

Jasmin24 profile image
Jasmin24 in reply to Moon_maiden

Yes you did! Your better then CAB, with your advice! I know who ask now 😂

Moon_maiden profile image
Moon_maiden in reply to Jasmin24

Let us know how it goes

Timmer79 profile image
Timmer79

Maybe GPS shouldn't exist...then we could go straight to consultants who actually know what they're talking about!Omg I feel for you Heloo85, what a traumatic experience!!

I do feel its a numbers game these days, GPS seem absolutely useless to chronic illnesses and the pain clinic...don't get me started!! They created a diagnosis for me just by a quick telephone call...ughhhh

There must be a better way for us all

More than happy to sign a petition/email to bojo if you can let me know the email address?

Hope things get less sh1t€, for you soon xx

Heloo85 profile image
Heloo85 in reply to Timmer79

The thing is the consultants are just as bad! They ain’t knowledgeable and just waste your time circulating the same 3 treatments, which just make your life more miserable!

They pretend they’ve done successful surgery for you to later find out they didn’t do half of what you thought they did!

Xx

Moon_maiden profile image
Moon_maiden in reply to Heloo85

Me exactly on the only did half what I expected 🤣 🤦‍♀️

635703 profile image
635703

No.words. I am so so sorry 😢

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