Terrified of endoscopy

[Rumors1]

I was referred for a scope last Feb, a week later I got a call from the hospital and I was told it would be about 2/3 months away. I hadnt heard anything since and didnt follow up as I am so scared. I received a voicemail from the hospital this morning from that dept asking me to call back. I imagine its to book me in. I am really worried about getting this done, its one of my big fears.

I suffer from panic attacks around breathing and my throat, im really scared of any choking feeling. I mentioned it to the nurse on the first call and she tried to reassure me saying she would give me a numbing spray and I wouldnt feel anything. The thoughts of a numbing spray makes me panic more as I would be worried about choking and not feeling it.

The procedure is because I am having a lot of reflux and stomach issues, I am on methotrexate which can cause stomach inflammation. I am also due to have a colonoscopy at the same time due to IBS.
The logical part of me knows I should get it done but I feel physically sick at the thoughts of it.
I had my stomach pumped about 30 years ago, I resisted and was held down and the tube forced down my throat, it was a horrific experience and I know is contributing to my fear.
I would love to hear from people in my situation who had it done. I know most people wouldnt like this done but I am talking a different level fear.

I put the endoscopy off as long as I could, went into meltdown when she told me to swallow the tube after the numbing throat spray and they gave me extra sedation on top of what is standard. I got through it.

I reckon I'd be ok with a colonoscopy with nowhere near the anxieties about that...

I'm a bit shocked at the replies here. I'm due a third gastroscopy soon, I've had two before. Just had the numbing spray and was offered gas and air or sedation too. I didn't need either. It was fine, kept breathing slowly and deeply through my nose. The consultant said after the last one that for most people the worry is worse than the procedure. OH has had one too without sedation and was fine.
Now I'm irrationally worrying about my upcoming one and wondering if it depends on the skill of the surgeon.

I think it’s very individual, I have a friend who needs them regularly because he’s got Barrretts oesophagus and he has them without sedative.

If you’ve had two before, I think you’ll be fine. I’ve got a very strong gag reflex - I struggle at the dentist - maybe that’s why I found it difficult.

I worked in endoscopy for several years.

LOTS of people have the same fears as you, understandably. Our gag reflex is there for a reason; to protect us from choking, so naturally, it's going to be difficult to control. You can have throat spray AND sedation. This is usually a benzodiazapine - midazolam. Occasionally I have seen an opiod given alongside or instead of midazolam for a gastroscopy but they are usually used together for colonoscopies.

Sedation isn't for 'knocking you out', that would be a general anaesthetic, which you won't get in an endoscopy unit as they don't have the back up and facilities needed. Instead, it's a 'conscious sedation', so it's a safer way of carrying out the procedure because you will still be able to maintain your airway.

Main things to remember; concentrate on your breathing - this helps with the gag reflex. It's not a painful procedure and it's over and done with in about 5 minutes - super quick! You'll be fine - I've seen WAY more patients complete the procedure than fail, and I've never seen anything 'bad' happen.

It's not a painful procedure

I really disagree - mine was extremely painful.

If it is done under sedation you won't know anything about it. I have dental phobia and had an extraction done under sedation. I remember the dentist putting a cloth over my eyes to protect them from any spray and declaring the tooth to be a piece of cake then nothing. It's really good stuff.

Sedation isn't for 'knocking you out', that would be a general anaesthetic, which you won't get in an endoscopy unit as they don't have the back up and facilities needed.

I had GA in an endoscopy unit. An anaesthetist and another person from their team came in to do it.

I did it without sedation and just the numbing spray as needed to drive and watch my child afterwards and the following day.

OP it’s not pleasant but it’s 5mins, they agreed I could take in my music and I had music playing in my ears the whole time. I practiced breathing techniques before hand with the same set of music. I tapped my fingers and it was over before I knew it!

They should offer you sedation as an option, for me I don’t like feeling out of control so another reason I didn’t opt for it.

@Notmynamerightnow your own personal experience is infinitely more useful and relevant than anyone else's. You've had them and you were fine, so you'll be fine. It's like with smear tests, I absolutely believe that for some women they are awful, but for me personally they are not the tiniest bit painful so the anticipation was worse than the event.

Building on what you said @PigsinBlankets22 , the sedation may not clinically "knock you out", sure, but I have absolutely no memories of what happened. No flashbacks, no dreams, no intrusive thoughts. In terms of my memories I might as well have been knocked out. I say that as a good thing. It was very effective.

I had one a few months ago with no sedations it’s unpleasant but actually not as bad as other things. Yes you will gag but they are careful not to let you choke. I found deep breaths like when you feel sick and punching my tongue anguish my lower back teeth helped. It’s over in 5 minutes.

Ok so based on two people's experiences....it is painful and someone had it under GA in an endoscopy unit 🙄

It's generally not a painful procedure. It can sometimes be classed as uncomfortable.

If you were to have an endoscopy under GA, you'd have to have it prearranged - not just turn up for your gastroscopy, decide you want it under GA, and have it done there and then. Pretty sure the NHS can't pull anaesthetists from surgery every time a patient decides they want GA rather than sedation.

Sedation can offer a lovely side effect of amnesia - there's a good chance you won't remember a thing 😁

This is untrue. It's light sedation. You're awake and aware the whole way through.

I wasn't. I was zonked.

@Rumors1 Hi Op, I just got in. Very long day after 2hrs each way too.

So I had to wait two hours once there atr they were behind which ramped by nerves up but when I got in everyone was lovely.

You have a horrible tasting spray at the vavk of your throat, it makes it feel numb and like a lump is there but there isn't, then they do the sedation and get going.

I remember them putting the mouth guard in and not a single thing until the sedation wore off a bit and I was mid endoscopy.

I promise I was nowhere near as I was panicking about. And I can barely remember anything at the moment, just super groggy.

I'm so glad ifs done and this time Saturday you'll be done too.

Def not agonising as I imagine. Honestly xxx

@Rumors1 and I wsd honestly like you feel beforehand. Absolutely thought I'd fail.

I have a bit of a sore throat but thats it from the gastroscopy xx

In which case you had more than light sedation.

Thanks for the update @justfornow1 and so delighted it went well for you. I hope I have a similar experience.

@Fraggeek my friend had the normal sedation and she said she slept through the whole thing, one minute she was getting the injection, next they were rousing her. She didnt think she had even had it done, said it felt like a second had passed. I expect some people are more sensitive to the sedation.

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

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.

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

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.

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

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 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.