Terrified of endoscopy. Advice please

[Bbq1]

I have posted in AIBU to reach more eple.

I am currently into my third week signed off work. I am very unwell with abdominal issues and having had cancer in the past, I'm deemed high risk.
The hospital has given me an appointment with the consultant early November. I cannot imagine how I am going to cope until then as i am in pain for much of the day and not eating or sleeping well. The reason for the consultant appointment is tu discuss having a endoscopy with GA. They attempted the procedure 3 times year before last. First and second time i was hysterical so they couldn't do it. The third time I was double sedated and ended up (i was told afterwards) attempting to climb off the trolley and tear the tube away so they couldn't do it. Instead of waiting until November they have offered me a 4 th attempt with the endoscopy before then (no GA). I need to take it but I'm terrified it will be the same as the other attempts. I don't understand how despite double sedation I was awful at the last attempt. I have an extremely strong gag reflex, poor swallow plus the thought of somebody coming at me to put a tube down is horrific. If i could do it myself it would be easier.

Please please give me your tips on how to get through this if you have had one successfully . It was very frightening to hear about my behaviour last time when I had zero memory. Please help .

Oh, poor you. I had my first one a couple of months ago, and can understand your revulsion! I couldn't be sedated because there was no-one to collect me, so I had the throat spray and they gave me gas & air. I assume it helped, but it was a horrible experience - god knows what it's like without chemical support 😬

I vomited and cried all the way through. They said it was okay to puke ("just let it out") but they did seem a bit shocked by the amount of gagging & puking. Still, they got their photos.

My advice, such as it is, is that it's all over in five minutes. I kept that thought in my mind: in a few minutes I'll be all safe in that comfy recovery chair. It doesn't kill you or leave you injured, it doesn't even hurt a lot, it's just really fucking unpleasant.

It could be better for you to have very light sedation rather than a sledgehammer dose.

When I had some heavy root canal treatment, I had hypnotherapy beforehand. If I could still afford that, I'd have done it before the endoscopy as well - might you try it? Alongside a shot of Valium, there's a good chance you'll get through it with ... well, maybe not equanimity, but it will be over quickly!

Thank you so much for replying. I'm glad you got through it. You're so right about the 5 minute thing and i need it doing urgently. It's like I've built it up in my mind so much because the first three times were so awful. So humiliating watching people successfully come and go while I'm in recovery for nothing. You mentioned less sedation and funnily enough a nurse has mentioned that to me. She said maybe i was given so much it just completely removed all my inhibitions. So i cam mention that to them. Hypnotherapy has crossed my mind so might be worth looking into
Thanks again, i really appreciate your advice and hearing about others experiences.

Aw, I'm sorry that you suffered so badly on the previous occasions. To be honest, I don't know how you can possibly undergo this procedure again without GA, given your experiences.

I had one about 15 years ago with just the throat spray and very nearly lost it and wanted to pull out the scope - but I somehow managed to keep control and all went well. I'm a nurse and would have felt I'd let the side down - crazy I know!

I'm claustrophobic and hate to be restrained in any way, gag very easily, and would never have this done again without sedation, but you've had sedation and it wasn't enough so I think GA is the only way.

I do not tolerate sedation, I get angry and try to get up, shouting obscenities 🤦‍♀️ you can feel everything and you get confused, it's horrible.

I managed colonoscopy with none - it was awful but lasted a few minutes and then I went home! Not sure if I could do endoscopy without, I'd probably wait for GA. Do you feel like you'd manage without sedation? You'd feel more in control I think but it probably does hurt 😬

You're right.
After i left a message saying I would have another go a nurse called this afternoon and said they weren't prepared to put me through it again as it had been so traumatic for me. I'm due to see the consultant now with a view to him organising the GA. It's good to know you understand d as a nurse. I tend to think nurses are fine with everything but you're only human. Sorry it wasn't easy for you

The only way I survived having one was with a GA.
I completely understand your terror

Don’t feel bad OP. I had a gastroscopy and it was horrific. The nurse had to sit on me to keep me safe as I was writhing and struggling.

I would never have one again without GA. 💐

Awful isn't it, double sedation really stripped me of ny inhibitions. I tried without sedation the first time and just sat there sobbing and shaking like a child. Embarrassing but It's such a genuine fear. I'm relieved that they say ga is the only solution now.

Glad you're going to get the care you need, OP 💐

I always have it done with a propofol and it's great. What sedation did you have previously?

Thank you @GGarlicGrace and everyone else for your lovely kind and supportive words. It's reassuring to know i am not alone in my abject terror of the procedure although I am sorry others have suffered.

Glad you're going to have it under GA
Hope all goes well

I've had 2, first one tube went down my throat which was awful. 2nd time they put it down my nose which was more bearable

I’ve had many many endoscopies. To start with I had to have them without sedation as no one to collect me. The first one was the worst as they took so many biopsies. I cried when they told me I had to do it again without sedation. The next ones I had I was told I handled them very well without sedation but I still dislike them. These days I have sedation but my blood pressure is always through the roof before the procedure. Good luck with yours, pleased that you managed to find a plan that suits you.

Just have the GA love. Why put yourself through it if you don’t need to?

I got the nurse to show me the camera before my endoscopyy. I’d imagined it would be GIGANTIC but it was a really thin tube, about the width of my little finger. That really put my mind at rest and I had the procedure without sedation.

a lovely nurse held my hand and talked me through the whole thing. I was gagging and burping like a maniac, and the biopsies weren’t painless, but it was far less traumatic than I’d expected.

I’ve had cameras in every hold now 😂 without sedation, and I think the bum was the worst. That’s so uncomfortable.

Go with the GA & don't feel bad about doing it. I have had an endo once, with just the throat spray & reassurance that everyone does it like that & it's just a bit uncomfortable.

Like fuck!! They got it done but fuck me it was traumatic, just reading your post my heart did a couple of panicky flips. I had to be held down too, I felt like I'd been assaulted afterwards. My nephew had one a while after & I just said 'don't be The Big Man, you take the anaesthetic, that's it.'

Take the GA & do not feel an ounce of shame!

Thank you, i am def going down the ga route now. There are some shocking stories here. Shame they can't offer ga routinely for everyone.

Why can't they give you propofol for this? It's the perfect sedation for this. I can't tolerate opioids, so have propofol for these types of procedures. I am in the USA, so maybe it's not an option in the UK. It's pretty standardly available here.

Same. I just had an endoscopy recently and I don’t remember a thing!

Extremely easy. I also get propofol for colonoscopies and they are always without any issues.

Good luck OP I hope you get answers soon.

It's so bizarre to me. It's such a violating procedure & sure some ppl are fine but some really are not & frankly it pisses me off that ppl like you end up feeling guilt & shame for reacting in a perfectly natural way to what is being done to you. It's not even about the pain (I've a very high threshold) is more than that, something brutal & torturous - and you're helpless
You're DEFINITELY not alone & definitely shouldn't feel ashamed. You're just advocating for yourself 👏

Really glad you're going to have the GA, hope all the outcomes are positive & now the decision is made you've nothing to worry about over the actual procedure.

I’m an expert at having gastroscopies . Ive had them every 2 years for the last 24 years . They always give me a light sedation . It’s like a twilight sedation or something like that . It puts me right out . Next thing they call my name , I’m wide awake and I enjoy a tea and sandwich they supply . It’s nothing like a big general anaesthetic . Get that type of sedation .

I feel for you, I've had 12 endoscopies over the last 19 years (had gallstones, gallbladder removed and ever since then I get reccurant biliary colic and have a dysfunctional sphincter of oddi). Never been put to sleep for one, usually a bit of the "banana" throat spray (banana my arse, it tastes like what I imagine licking the inside of a AA battery is like) and some good ole Medazolam to make me woozy. The last few I did without anything except the throat spray before cause I just wanted home quicker.

Best one was when they put the donut thing in my mouth (to stop you biting down on the camera tube as they pass it and damaging your teeth and the equipment) and I somehow managed to projectile puke THROUGH that all over the anaesthetist's balls. To make it worse, I know and work with him a lot so was weirdly awkward but not as bad as it would have been if I didn't know him (I work in obstetrics so often see him on shift to site an epidural/come to theatre with a patient). He still laughs every time we see each other. 10 years later he still hasn't let me live it down.

It's a horrible procedure though. Even after all the ones i have had, I still get anxious before it cause I know that overwhelming vulnerable feeling is coming while it happens.

I’d had around 20, including 10 ERCP’s due to a pancreas disease. Ask for propofonal (might have spelt wrong), you won’t wake up with that. It’s horrible when not properly sedated and I refuse to put myself through that anymore

It's really not about "pain" per se. I have a very high threshold for pain and get all my dental work done without any anesthetic, but would not be able to tolerate a camera going down my throat and need propofol for that. It's very personal the reaction and varies from person to person. Please don't let them shame you into doing something that doesn't work for you.