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.

Have sedation no question. I have had 2 one with and one without, my gag reflex isn't great but with sedation I didn't know anything about it. I woke up and it was done.

I got through it the first time without sedation, because like you, I was told a numbing spray would help, but it was very difficult, even with a great team and I tried to pull the tube out.

Given your history I wouldn't even attempt it without it.

They can knock you out for the procedure. Can you ask them about that? I've had a couple. They knock me out and I wake up feeling super relaxed and peaceful.

Sedation is the answer. I'm quite brave about musical procedures but after having one done with just the numbing spray I said never again! Colonoscopy was fine with or without sedation but if you're having it all done same day, just go for the sedation and it'll be fine.

I have to have them every couple years and with the throat numbing spray it just makes it easier to go in but not completely numb if that makes sense but given your concerns, have the sedation and you will be fine. I usually just do the spray but ive heard with sedation its a breeze and some dont even remember it.

Even without sedation it doesnt take long at all.

Sedation. I’ve had one without and one with. Never ever ever would have it without again.

I was similar to you , utterly terrified. I was offered a small amount of sedation so I was still awake but sort of unaware. I can’t say it was something I’d rush to do again, if necessary I would though because it was really not as awful as I’d expected and over very quickly . I did gag a little but without stating the obvious they really know what they’re doing. Good Luck , I promise the thought of it is way worse than the actual reality.

I also have severe anxiety and panic attacks. I was given a higher dose of the sedation.

I was awake - you are aware of what's going on, but you're in sort of a dream-like state. And I was absolutely fine.

I promise you it will be ok. Just make sure you are honest with them how anxious you are. Trust me, it's in their best interests as well as yours for you to be as relaxed as possible so they will do all they can to help.

You've got this.

It sounds like they haven't even offered you sedation. When I had my first upper endoscopy, the leaflet they gave me was very unsubtly pushing unsedated endoscopy, saying how it can be uncomfortable but most people manage just fine with throat spray only so why are you even making such a fuss you whinging pussy, do you think the NHS is made of money and resources to pander to your selfishness and lack of fortitude, blah blah "some discomfort" blah blah. The only bit in the whole leaflet that hinted at how distressing it can be was the part where they mentioned that staff might "gently restrain" you. Er, no thanks. Oh, and the blink-and-you'll-miss-it stuff about bite guards and risk of breaking your dental work.

Anything that's so "uncomfortable" that ordinary sensible members of the public who know they need an important medical procedure will suddenly start fighting the medical staff and have to be restrained is, in my opinion, "uncomfortable" enough to merit sedation. People in many other countries mostly seem to think it's bizarre and barbaric that in the UK upper endoscopy is routinely given without sedation.

And although I've read the odd account by people saying that for them, unsedated upper endoscopy really was just uncomfortable, I've rarely seen anyone say they chose to have a second one unsedated, too. [Edit: Though I see that a PP said she has them unsedated every couple of years, so obviously such people do exist!] Plus, even if 75%, 80%, 85% of people are genuinely okay with unsedated upper endoscopy, I wouldn't want to take the risk of being one of the sizeable chunk of people who find it really distressing. The thing that finally decided me was my dad, a doctor who's been present during many of these kinds of investigations, telling me flat that I should just get the sedation, no matter how inconvenient.

If you can possibly get sedation, please get sedation. I don't remember my first one at all, but on my second endoscopy, my sedation didn't work well (I have some resistance to the drugs they use because of my medical history) and it was extremely unpleasant. But without the drugs it would've been unbearable. Even so, if they want me to have another one at some point, I'm not sure I'll be able to face it, even with sedation. Effective management of pain and discomfort isn't just a luxury — a distressing medical experience can affect your future ability to access healthcare.

You need to call them back, explain your trauma history (you don't have to go into detail, just mention than you had some medical trauma) and ask for sedation.

A distressing medical experience can affect your future ability to access healthcare.

Um… as you well know, obviously!

I agree with Catza that if they're reluctant to give sedation (and if there's no medical reason you can't have it), you should call and explain that you have a legitimate medical reason to require sedation for this kind of procedure over and above the fact that, IMO, nobody should be expected to have an unsedated upper endoscopy unless they medically have to, or they actively choose to.

People in many other countries mostly seem to think it's bizarre and barbaric that in the UK upper endoscopy is routinely given without sedation.

To be fair, it varies a lot by country, and some countries are even less likely to offer sedation than the UK, while many of the countries that use it most are English-speaking countries other than the UK (Canada, Australia, USA), so on English-speaking parts of the internet, the picture is a little skewed.

As others have said ask for sedation; but also check if your appointment is in an NHS clinic or a private clinic, as the sedation protocols are sometimes different. In a private clinic you might just be given some fentanyl, and it doesn't properly put you to sleep.

I recently had this procedure with just the numbing spray. It was not pleasant but not so bad that I would ask for sedation if there is a next time. Breathing is not affected at all surprisingly and the spray suppresses the gag reflex. I think the key thing is to try and not tense up - easier said than done! If you are worried though then ask for sedation - you don’t need to overstress yourself. Hope all goes ok for you.

I had one a few months back and went with sedation and it was really stress free. I have a small jaw that dislocates really easily so I was keen not to fight the procedure and tense up but worried about feeling out of control. I had throat spray and then the last thing I heard was the consultant saying "I'm just injecting the Fentanyl in" and my last thought was "hmm..Fentanyl - this should be nice" and then I woke up. It was all over, my mouth was empty of any equipment and I had no pain at all. I can only describe it as being switched off like a tv remote in that I was switched off and then switched back on. The Fentanyl made me quite relaxed for the next few hours and I had no bruising or soreness at all.

Crikey, have sedation!

I’m pretty sure they use midazolam - it doesn’t put you to sleep like a general anaesthetic, but it makes you feel bloody lovely!

I’ve had it for dental work (terrible phobia) - can’t really remember much about it apart from feeling very nice.

Sedation OP. I have a similar fear. I had to go for one and they sedated me. You come round similar to like when you're under a general anaesthetic, don't remember a thing. It's like I just woke up after the procedure even though I was apparently awake through it. They give you drugs that stop you being able to form memories and you don't remember a thing.

Personally im glad they offer the option for both as I hate the idea of sedation. The throat spray certainly isnt fun but weirdly of the two options, thats my go to each time. What I dont like is how the NHS seem to almost push the throat spray as the only option so some feel like this is the option they should take.

Do not allow them to do this with just numbing spray ! It does next to nothing.

Insist on proper sedation - midazolam wasn’t enough for me and they couldn’t complete the procedure.

Propofol is much better but requires and anaesthetist - which costs money so the NHS may be reluctant to offer this. I paid privately to ensure I wouldn’t be fobbed off the second time.

Had one last Wednesday with sedation and throat spray and it was okay. It only lasts 6 minutes. They explain step by step what happens so no surprises. You can breathe through nose and mouth the whole time and can't feel anything in your stomach so there's no pain. They pump a bit of air in so you'll do some very satisfying burps while it's going on. They diagnosed me with gastritis and a hiatus hernia so although I was nervous I'm very glad I went through with it. Meds prescribed since for reflux etc mean I'm pain free for first time in years. Good luck!

I panicked like mad and did not like the throat spray but had opted for the sedation and I am glad I did. I kind of went under just as I was about to have a panic attack from the throat spray.
I remember being completely out of it but hearing at one point the surgeon chap saying can you try and hold the air in!! Hilarious…how do you hold air in an open balloon?? Ha ha!!
so…all in all it was actually ok. I worried far more than I needed to which is quite normal for me. Best of luck

I had throat spray and sedation. There was no issue over it. I think it was assumed that most people opt for sedation. I think you do need someone to collect you afterwards though. I think they should discuss it with you when you arrange the appointment. Good luck x

One word - sedation.

Proper sedation is key and not the weak "drowsy" stuff where it stops the patient remembering it after but they remain fully aware during the event as any nurse will tell you. Another option to consider if you go private is having a nasal endoscopy where you sit up and they feed a smaller unit up through your nose which is obviously painful but in a different way that doesn't feel like choking and you can still talk (there are youtube videos of this procedure being done on live TV!)

Sedation. They will do it but try & convince you 'you'll be fine' without cos it's cheaper for them.

But absolutely fuck that! You just be dead clear with them that you NEED sedation no ifs nor buts.

Plenty will tell you they've been fine without anything & that's true & great for them but don't be swayed.

I've had both gastro & colon without fwiw & will not ever do gastro without sedation again & it's due to the fear exactly as you describe, nothing to do with pain.

Have the sedation & there's nothing for you to worry about :)

Absolutely, you should be able to choose what's right for you (assuming the clinicians believe they can safely and successfully carry out the procedure that way).