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.

Total coincidence but my partner had exactly this today (endoscopy and colonoscopy). As we don't live in the UK but are in Europe, here's their experience:

1. The time from getting the initial referral to the actual appointment was about 5 weeks - this is through the normal public healthcare service;
2. When they went to collect the fluid mix (to be taken before the colonoscopy) they expected to just pick up the mix from the hospital and take it home. Instead, despite just walking in and asking for the stuff (i.e. with no appointment) they were given a 20 minute walk through with the Consultant who explained everything in detail and answered any questions, and who stated that sedation is standard;
3. Today I dropped them off at 09.45. and picked them up again at 12.00 (patients cannot drive and need to be collected by a "reliable person" - which I clearly qualified as);
4. The procedure itself took less than an hour - fully sedated and asleep - and was followed by 40 minutes in a recovery room, then a 20 minute consultation to discuss what had been seen on the scopes.
5. Overall no discomfort other than the initial injection of the sedation. The 24-hour fasting and drinking the pre-colonoscopy gunk and the resultant "cleansing" was probably worse than the actual procedure.

I'm the same. I hate anything medical and am frightened of panicking / choking. Also very scared of sedation.
I had a endoscopy with no numbing spray or sedation and I was absolutely fine.

Had a gastroscopy today! It really wasn't bad at all. They put a numbing spray in the throat, then they sedate you. Over in 10 mins

My local hospital offers the nasal endoscopy. There is no sedation with this and apparently it is much less likely to make you gag than the traditional endoscopy, so it is worth asking about it.
I found the throat spray very unpleasant as I wasn't warned beforehand about it and thought I was just getting sedation.

I'm unfortunate enough to be very sensitive (in a bad way) to most anaesthesia - but I'm REALLY allergic to midazolam and get dystonia as a result.

I had the procedure with nothing, not even the local because of my previous reactions to fentanyl, propofol, morphine, lidocaine etc - and my reactions are varied and crazy, something to do with my blood brain barrier. The actual entering of the tube into the throat wasn't pleasant but the moving of the scope round my small bowel was really painful. So if you are okay to have sedation insist on it. Advocate for yourself because this is HCP's bread and butter and I think they forget that it's quite a big thing for patients.

I agree with all others regarding sedation. I had one a few months back and opted to just have the throat numbing spray. That was definitely a mistake, it didnt hurt, but it was very, very uncomfortable. I kept gagging, and it was just very unpleasant, probably worse than giving birth all though over much faster. If I needed another, I'd 100% go for sedation.

OP please insist in sedation. If you are told you can't have it speak to PALS and complain. Or if you can afford, go private. Having an endoscopy without sedation is a terrible idea for anyone and for you, having gone through previous medical trauma, it would be horrific

Ive had both endo and colonoscopy twice. I had them on the same day. First time was in 2015 and then the second time last year. I didn’t opt for sedation on either occasions as I had young children and didn’t want to be out of it, just wanted to be able to to go home straight after without having or wait around in a hospital and then wait to be collected and feeling rough afterwards. It’s not the most pleasant experience whatsoever but I just closed my eyes and let my mind wonder on other things as a distraction technique. The numbing spray they used did help prevent me gagging as the tube went down the throat. Surprisingly the endo was more tolerable than the colonoscopy as it didn’t last as long and you just feel some prodding but it’s a great relief when the tube comes out. The colonoscopy lasted a lot longer and it felt quite uncomfortable at times. I did open my eyes at various points in the procedure and I could see the camera on the screen. It took some biopsies and got rid of some polyps thankfully at the same time.

so in all it depends on how far you can tolerate a fairly invasive procedure and your body will try and fight it which is why I closed my eyes. I remember at the time thinking when is this going to end so if my circumstances were different I would probably be tempted to have sedation although I think that would freak me out a bit as I remember having sedation at the dentists when I was about 8 years old having a baby tooth taken out and I woke up being carried out into the waiting room and I wouldn’t stop crying for the rest of the day. This was the mid 80s so times have changed since then!

I've had both twice, and unsedated both times by choice. It was the right choice for me but I always recommend people strongly consider sedation if it's suitable, because while not painful (for me) they're not pleasant.

Please try not to worry about it too much and good luck.

Like many other POs have said, sedation is your friend here. I had 6 endoscopies last year, the first one the nurse convinced me to just have the numbing spray & that I'd be fine & recovery would be much quicker. It was not fine & subsequently I had sedation for each of the next 5! They can be quite persuasive so just stand your ground. Good luck!

I've had two with just the throat spray and one with sedation. I was totally aware of what was happening at the time with the sedation, I just didn't remember it afterwards.

I've had two of them, they are uncomfortable but necessary for the right treatment. I got mild sedation both times, so I knew what was happening but I was chilled enough to cope with it, alongside the numbing spray.

@Rumors1 call them back and make sure you say that you want proper sedation not just the spray. I've had the procedure you're having with proper sedation which was fine and then just a gastroscopy with the numbing spray and it was a lot more unpleasant.

Definitely have sedation - you won't know anything about it, then. Sometimes hospitals try to dissuade people from having it because it means you stay in the hospital for a couple more hours but sod that - you must advocate for yourself. Don't worry, honestly it will be fine with sedation.

My mum's exactly like you. She was having problems with reflux so needed an endoscopy. She's always had a terrible phobia of choking. She hates even having a cold because she gets catarrh in her throat and hates that feeling. She always has a very narrow oesophagus which just increases her fear of having anything in her throat.
She was a nervous wreck in the days before her endoscopy. As she went in the nurse made some terrible joke about the procedure saying "Welcome to the torture chamber". By this point my mum almost passed out!
Anyway, she had sedation and was absolutely fine!! No problem at all. It was over before she knew it. She said she'd happily do it again.

Everyone told me mine would be fine as I was having sedation. It wasn't - it was awful. It was the worst procedure I have ever had, counting open surgery. It was a mistake to believe the 'you''ll be fine' crew. I would advise you to be prepared for the worst, OP, and then if it isn't as bad as you expect that will be a bonus.

When I went for it, the doctor then consultant both said "oh you'll definitely want sedation", as long as you have someone to pick you up it's fine. I thought they would try to persuade me to have numbing spray only, but it was the opposite. Went in thinking "oh dear I will remember this, what's he setting up there by my head, wait I'm back in my little room again - oh I feel woozy". Wore off really by the time I got home, slightly sore throat and some acid reflux. No need to over-think and be all brave about it, just tell them you have issues and want sedation.

Another vote for sedation! I had an endoscopy with throat spray 30 years ago and wouldn't do it again. Endoscopy last month with sedation was amazing!

Thank you for the responses, they were really helpful. I called them back, it wasnt for a date for the procedure but to refer me to a private clinic to get it done. It will likely be done in a few weeks. She said I will be offered sedation (midazolam), I will definitely take it. Dreading it still but will have to figure a way to get through it.

You just go in a sort of auto pilot when it comes to it I think. Nurses are always lovely in these situations to get you through, I have had them hold me hand before just to feel like I am not alone (had cataract surgery and was petrified) they are used to people being very anxious and just know how to sooth you. I promise you will be fine.

I'm so sorry you went through that Sethara. Did the sedation not work properly?

Op I have both next week too. I also am petrified despite having countless ops and procedures like this for 20 years.

The fear is natural. I know I won't sleep the night before and already feel sick that it's only a week today til it's time.

But the sedation really does make you more relaxed and it also has the effect on me that I barely remember anything. That's the only thing getting me through.

Good luck. We've got this! 💐

I have had two, privately, full sedation. They offer both ways, but I was minded to take the sedation. Really easy, and don't remember anything. Had a lovely meal when I woke up. It's more expensive, but worth it. The NHS should also offer this option. Don't to be bullied into substandard care.

@justfornow1 best of luck, will you let me know how you get on please?
Thanks again everyone, great to hear your stories x

I have similar issues to you around my throat. I had IV midazolam sedation but it didn't work, not even in the slightest. I had the spray, couldn't feel my throat or swallow which was bad enough, and when they started to insert the tube (hose!) I had a full-blown panic attack on the table. They arranged for me to have one under propofol which they said should put me properly under.

The last thing I remember is being told my eyes would start to feel heavy, and then the next thing I knew I was pissed off because someone was trying to wake me from a lovely sleep in the recovery room.

Other people I know who've had them have said the midazolam completely knocked them out, but for me I didn't feel any effect at all. It's different for everyone. If the sedation doesn't work for you there are other options.

Edit: seems @Sethera had the same (non) experience with the sedation!