Vasculitis UK


Hello everyone, today's procedure didn't go as well as I hoped. I had a major panic attack entering the room

I was given the numbing throat spray which made me wretch & unable to swallow I also opted for sedation,

I tried multiple times to swallow the tube, but due to my gag reflux persistent choking, & pulling out the tube I was unable to continue with the procedure.

In recovery I was made aware that I was fighting the nurses, pulling out the tube a number of times, I tried 6 times but it was unsuccessful.

I do have a letter in which it states that due my extreme level of anxiety, & safety of myself & staff it would be better to perform another Gastroscopy under GENERAL anaesthetic otherwise I will not be able to undergo it again.

I feel a little bit upset I did try to swallow it, was the biggest challenge ever! I'm more traumatised than anything, plus I didn't get to find out what was really going on inside my stomach & large bowel!

I'm awaiting to see my specialist tomorrow at QEBH at the ENT combined clinic.. let see how this appointment goes.. 🤞🏻

16 Replies

You poor thing ....I think it's inhuman! There is no way I could go through it without proper sedation.

I wish you luck ...but please remind them before you go in and when you are actually in op room that you remind them again!

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Thank you Shella, I had a horrific endoscopy experience back in 2004 & I stated due to that a general anaesthetic would be better for me. So yesterday despite being standardly sedated it just wasn't enough for me. But yes I will remind them next time that being put under is the only way forward x


Thats a horrible experience for you. Just try and put it behind you and concentrate on tomorrow. Good luck

Love jo


Thank you so much Johanna, I Will do my best to shove it to the back of my mind. Today is very important as I might get some results or possibly a diagnosis xx


Well done for trying Laura when your anxiety levels were obviously so high. It was very brave of you. I'm sorry it was so traumatic. Sounds like a general anaesthetic is the way to go. Hope it happens soon for you.

Good luck with today's appointments, look forward to hearing how you get on X


Hey Ludo,

THANK YOU! For saying that 🤧that brings an immense amount of comfort.

My mum was very disappointed in me, as soon as my boyfriend & I got home she was angry that I didn't manage it. Which upset me quite a bit, I did try so many times!! Despite having a standard sedation I think I needed a higher dose. I didn't get along with the throat spray I just kept gagging. 😷

Yes a general is the only way, better for everyone as well, & plus they could have a proper look & take biopsies.

I'm seeing Lorraine today at the ENT clinic. Not sure how or if I can manage the tube up my nose but I'll give it a go.

Wouldn't it be great if they could do the both under General at the same time ?!

I'll let you know how I get on later x


Hats off for you giving it a very good try.

I am so with you regarding anxiety re gastroscopy. I can't believe from what you've said previously that they didn't just op for sedation. Been a wasted time on all accounts and now pushed your anxiety up another notch or more likely two. For the sake of some Midazalam.

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Thanks so much Cambs13! When I hear some words of appreciation & support it means the world so thank you x

I had sedation 3mg of Midazalam but I don't think it was given enough time to work, possibly it wasn't strong enough!! I was given that last time, It was very rushed & I struggled badly. Despite my panic attack through the procedure I did try my absolute best to swallow the tube, I know they were getting agitated!

Prior to going in for the procedure all the nurses knew of my horrific past experience in 2004, they were made aware of my chronic panic attacks & fear, I was crying & shaking, I felt exhausted before going in. But they did say I could have a heavy sedation & wrote it down on a piece of paper to hand to the endoscopist..

I felt very relieved & happy about it..

But when I entered the room I asked if that was ok & she said no a standard dose would be fine.. & that was it 🤢😭😩💀

Felt sorry for my poor ticker it was in my throat! X


I was offered a general anasthetic for this procedure and boy, do I wish I had taken it. I had the throat spray but it felt much stronger long after the procedure was finished so I feel it should have been left a while to take effect...I then had to be forcibly held down while an enormous tube was forced down. It really felt like an assault and I was really quite shaky for some time afterwards. INSIST on an anasthetic


Sarahdollygirl that sounds as horrific as mine !! I really really feel for you, & can imagine the trauma it bought long after !

I have to have a nasal endoscopy today but I think my details from yesterday will indicate how phobic & anxious I really am.

My hands were red & blotchy when I was in recovery.

So I was aware that I was held down.

I'm just reading the report & it states this


Unfortunately, she couldn't tolerate the intubation & constantly pulling the tube out. I had to abandon the procedure for the safety of the patient and staff. She had sedation and throat spray. Please review, I don't think she will tolerate the procedure with sedation and there is no point to try again,

General is the way I can get answers. X


Be strong but be adamant - they would not treat animals in this way I can't believe they even try .....

I have had quite a few over the years and always wake up when it's over which is best for you and the doctors!!

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Hi Laura

Sorry that you had such a rough ride. But, like others have said, you gave it a very good try. And I speak as someone who just cancelled the barium swallow Im meant to be having!

Hope the leg has healed up ok?

btw, the consultant has diagnosed me with two autoimmune conditions, and thinks that APS or sclereoderma could be the third. But he said that he didnt think I had vasculitis. So, I guess Im a bit of an impostor here.

hope the other tests go smoothly.

best wishes


Hi Laura, Don't start beating yourself up, about not completing the procedure as we know how difficult it is. The nose tube as you may now be aware is not so bad. We the conditions the we all suffer from what ever one you have it is not easy, days can be very challenging . We pick ourselfs up, and start again. We are here !! Kind Regards Lorraine


Hi Laura how did your Bham appointment with Lorraine and ENT go today?


Hi Laura, your Gastroscopy message was only emailed to me this morning. I wish I had received it a day ago because I too had a Gastroscopy Monday (31st July 2017) just gone. Words can not explain the pain I went through but it showed truly it showed. I didn't feel or think it would be that bad but then again I didn't know what to expect all I knew is that I couldn't be put to sleep because I had no one to take me home, so I was given another option, numb my throat. When I got there, after speaking with the nurse it sounded like a simple and easy procedure but when I sow the size of the camera my fears came flooding in, couldn't prepare myself. The whole procedure was a 5min nightmare. The more it went down the unpleasant it was, then to be told there is nothing wrong and it was all stress related. I felt more alone because I had no one to hold my hand or wipe my tears. I cried and cried and cried and cried some more. My landlord have made my life a living hell because of their actions, so am sorry to hear your experience but to know that you have several conditions which need for you to do this and to know you have to do it again in the near future. You have now the experience of two (general anaesthetic back in 2004) and you know now what's best for you. All I can say I hope they find a cure for you because either a sleep or not it is not pleasant, it truly is traumatic to the body and mind and not forgetting traumatising.

Kind regards,



I'm reeling with disbelief reading this ! Imagine being held down by ANYONE never mind during a difficult medical procedure!!!

It gives me a panic attack even thinking of it 😱 Are our services at such a stretch they need to rush through a procedure before a local anaesthetic has even taken effect ! Makes me mad !

I've lung problems so I avoid a 'general' but I need an endoscopy- I've PA (antibodies confirmed) and such bad acid reflux I've opted to have it done to see what's happening in there. I've tried all dietary adjustments to no avail. I've had hpylori which hasn't cleared up so I'm concerned about future dodgy Parietal cells cooking away in there ....who knows ???

I've actually had a trans oesophageal echo with no anaesthetic or sedation and the consultant was fantastic ! I was the talk of the ward 😏 It was done to diagnose a PFO (patent foramen ovale aka hole in the heart) It was very small so we elected to leave well alone. The camera however was far from small but it was only going down as far as my heart so I can only imagine the discomfort going right down to stomach level ! I know I'll retch as my gag reflex is ridiculously bad. My anxiety levels can be pretty acute so I guess a 'general' is the way to go

I've tolerated a 'general' for brain surgery - what could be worse ..... an endoscopy without a 'general' I guess !!!

It does make me very cross when the staff minimise your pain/stress/discomfort/anxiety etc etc . I know it's a job they do every day but every patient/person is not the same. I wonder would they want to swap places !!!

Good luck with all your appointments and a hug sent for comfort 🤗


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