Terrified of endoscopy

I’m a nurse and had exactly the same experience! They couldn’t complete the procedure and had to abandon. I was a bit out of it but was very much still aware, can still remember everything and I had midazolam and throat spray.

I have been told sedation can make people panic though as it’s like someone coming towards you and forcibly doing something when you’ve had a few drinks, it just made me feel drunk. I had a mouth guard and the nurse kept telling me to sink into the pillow and they told me once it’s passed the throat it’s fine but I tried to relax and shut my eyes but it was like gagging coming from my stomach which is the only way I can describe it. Afterwards my mouth was bleeding I guess from the force of gagging. I wouldn’t want to put anyone off as it’s necessary but I myself couldn’t do it again without something more. I even did a placement in endoscopy when I was studying so I don’t know if that made it worse for me as I had 6 weeks there seeing constant endoscopies and colonoscopies

Not that I know of - I am just very sensitive to anything anywhere near my neck/throat - I can’t even tolerate a scarf or polo neck.

When I had propofol it wasn’t a full GA but closer to that than the midazopam sedation was I believe.

@Fraggeek I walked to the supermarket after mine

@Waltzers I too have the fear of not being able to swallow! That’s why I freaked out so much after they gave me the numbing spray, I had a full blown panic attack and couldn’t stop crying. When I go to the dentist I tell them beforehand and say that if I raise my hand, please can they stop so I can swallow.

omg I'm glad it wasn't just me, although obviously awful that you had to go through that too. I've had 3 endoscopies in the past. the first was private with a colonoscopy and I didnt feel a thing. they used 10ug of fentanyl and 5ug of midazolam and I didnt feel anything. the second time I have no idea what sedation they used but they had to stop as I couldn't tolerate it and the sedation did nothing to stop my gag reflex. it was horrific. worse than childbirth. I was so scared going into my third procedure last week under a different nhs trust. I warned them how I hadn't tolerated it before. said I need the full 5ug dose of midazolam but they only used 4ug and 5ug of fentanyl. Yet again they couldn't take any biopsies for my erosive gastritis and had to stop the procedure. One of the nurses said ill have to have it under general next time.

Are you hypermobile at all? I am. I've read it can affect how sedatives work. they can be less effective which rings true from those procedures and when I've had numbing cream that doesn't work.

I'm in Australia and had mine on Thursday, was put to sleep for it as is standard here. The lovely Japanese anaesthetist told me how lucky I was because he had his in Japan where it's spray only. I said you'd have to tie me to the bed to do it that way! I have a horrendous gag reflex, I also have a terrible fear associated with not being able to swallow when I want to (dental trauma from teens) so the thought of a tube down my throat makes me panic!

Once I was home it completely knocked me out for about 3 hours.
I was in recovery with several other women who had sedation and although we were told we'd have to wait an hour after the procedure before we could leave, I was there the longest due to my blood pressure being low (which it is normally 🙄) and I was the last one to leave after 40 mins. Maybe they do a lower dose at my hospital 🤷

in addition to being terrified, I was really disappointed because I’d previously heard how wonderful it felt to be on midazolam.

I wish this had been the case for me. The sedation affects everyone differently and unfortunately it had little affect on me 😔

Yes, very recently.
I had the throat spray and midazolam. I was very awake and aware the entire time unfortunately.

I have had midazolam sedation twice and have zero memory- on top of that I actually slept through it- my lovely dentist who I trust implicitly told me this and I have no reason to disbelieve him!

Oh mine yesterday diagnosed gastritis as well. The Endoscopy also found Crohns ulcers but no surprise as I've had it 30 years.

Well done on no sedation! That was the only thing that got me through my fear. It has however left me feeling totally crap for over 24 hrs now.

I'd still take the sedation again though op. Especially with how worried you are.

The nurses with me were also as lovely as yours Kitkat. Makes a world of difference doesn't it.

I had one yesterday…..no sedation ……I was scared….won’t lie….but it was ok…..sprayed banana flavoured numbing spray to me throat….put me in recovery position….put a mouth guard in…..then asked me to swallow….I gagged a bit but it was in very quick……then I had a bit of a panic thinking I couldn’t breathe….and it’s a bit uncomfortable but I just did deep breathing….. there is one nurse who just focusing on encouraging and reassuring you….the worst bit was when the scope goes into top of duodenum , the. They turn it so camera sees the other side coming back up…..that twist of the scope was 😱…..the HCA took my hand and I squeezed her hand very tightly 😁…..they tooka biopsies …for h pylori …..didn’t feel a thing…..it was all done in less than 5 mins…taken to recovery to sit in a chair to ensure your swallow returns…,given tea and biscuits….,, a nurse came out with the reports…..told it’s gastritis ( inflammation of stomach) and no evidence of any cancer seen and reassured….15 mins later on my way home…..no sore throat at all

That was exactly my experience!

Regarding the throat spray….ive had worse bottles of house wine!

have You had this procedure?

@Rumors1 hope you're feeling ok, at this point weds I was petrified too. You will be ok though.

The nurse said 90% of people have sedation and it wasn't even questioned. Just, "do you want sedation?" "Yes please" "Great, no problem"

I still have no memory of it at all, apart from the numbing spray being disgusting and feeling like a lump in your throat.

Let me know how you get on

Thankfully there are alternatives to the NHS but only to the few who can afford them.

Ive said up thread- I had one with the sedative and fentanyl and it wasn’t enough - the procedure couldn’t be completed. I knew it wouldn’t work and I tried to tell them but noooo they were insistent it would be just fine. This was private not NHS. They knew better you see.

After that I didn’t trust them anymore and paid to go elsewhere for proper strong sedation - propofol - with an anaesthetist present.

No more problems. I’ve had 2 that way now - including an additional procedure while I was under. Still no more problems.

Never again will I let them convince me that their sedative is enough.

I have had it done and didn’t even opt for the numbing spray. It was very very hard as you can’t breathe the usual way and it’s deeply uncomfortable and unpleasant. My throat was so sore for days afterwards. I could even feel when they took the biopsy from my stomach lining but I didn’t have the same background as the OP. I will have to go for another one at some stage and will do it without sedation but that’s my tolerance levels. There’s other things that I find painful that other people don’t.

But I’d recommend that the OP insist on sedation with her fears even if the staff do their best to help you with the procedure (and the staff that helped me were excellent). All I can say is that when my daughter had stomach issues they didn’t make her have one as she’s still a child as I would have insisted on sedation for her otherwise.

I had to take my glasses off, because you’re lying on your side. I also felt very uncomfortable without them, and it meant I couldn’t see the screen - not sure if I wanted to or not, but I didn’t have the chance. The literature I got said they’d ask you to take hearing aids out, but thankfully this wasn’t the case for me.

I did have a really lovely nurse who talked to me all the way through it, but that only made it marginally better.

I couldn't do it even with sedation, screamed the place down.

Ask for sedation. I've had 2 without and the second one was worse than the first for some reason. Its not nice at all and I couldn't wait for it to be over.

That was exactly my experience….having another next week and am (mostly) unconcerned.

Speaking of a feeling of control, something to be aware of for people who wear strong glasses is that the fact you're not allowed to wear them during the procedure might affect your psychological experience. (When it comes to contact lenses, I've had a quick look online and while it seems to vary depending on the place and the procedure, I think people often seem to be allowed to keep them in.)

It does mention "no glasses" (among other things) in the leaflet, but it can't tell you how you'll actually feel in that situation, if you wear strong glasses that you'll need to take off. Of course, some people are going to be fine with it, but for me at least, being without my glasses is disconcerting in itself, let alone in a situation like an endoscopy.

I always feel profoundly vulnerable without them anyway — unable to see what's happening, or anticipate what people are about to do. I don't even understand speech as well, especially if the person has an accent I'm not used to, because I can't see people's faces, let alone mouth movements. With my glasses off, anything more than 8cm from my eyes is a chaotic blur. I can't tell what anyone around me is doing — all I see is giant blaring lights, a few human-sized blobs floating in and out of existence, and if my head is turned to the side, probably the weave of the fabric that my head is resting on.

My vision with glasses is fine, and I only take them off to sleep, so I'm no better equipped for this situation than any other sighted person with no experience of navigating the world with limited vision (though I admit that don't know how much having that experience actually helps). Both times I've had an endoscopy, I've tried to explain that I can hardly see anything, and asked them to please talk through what they're doing, but it doesn't help much with the feelings of loss of control and vulnerability.

TBH I'm not sure the endoscopy teams (or anyone else really) always fully realise just how poor it's possible for someone's uncorrected vision to be, when they see perfectly normally with glasses on. Or how scary and disempowering being without your glasses can feel, if people suddenly touch you or do things to you and you couldn't see it coming. (I mean, even just knowing that my glasses aren't within arm's reach and safe from damage is anxiety-inducing for me…)

And even if they do realise and understand how little I can see, and try to talk through as much as they can, they can't fix the fundamental problem that having unpleasant things done to you when you can't see anything that's going on can be pretty unsettling.

I was zonked too, and it was called "light sedation".