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.

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.

@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

have You had this procedure?

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

That was exactly my experience!

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

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 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!

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

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

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

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 🤷

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!

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.

@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.

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.

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

Maybe it's being a nurse thats the common factor then because I am too haha!

Get the sedation. It is usually midazolam which makes you not care about anything being done to you and also makes you forget.

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

I was a cardiac tech, I actually said to the Dr that we used similar equipment for TOEs and I knew there was no way it was going down my throat without sedation.

Maybe they gave me a bit more or added something else into the mix?

Hi, so things didnt go well for me on Saturday. I wasnt too anxious waiting to get it done. I was prepped and waiting for almost 1.5 hours but I did my best to relax in the bed. The nurse told me that most people fall asleep with the sedation and dont remember a thing.

I was wheeled in and once in the room I got a bit tearful. I had two wonderful nurse who were very reassuring and calming and told me I would be fine. I got the throat spray (was nervous about this but the nurse did 3 quick sprays and told me to swallow). She then administered the sedation, told me to turn on my side and put in the mouth guard.
I felt I couldnt breathe properly but she told me to breathe through my nose and that I had nasal oxygen so was fine. I closed my eyes and really tried to relax. I had to keep swallowing which was uncomfortable with the mouth guard in.

The consultant then started to put the tube in but I felt no effects from the sedation or throat spray and I started gagging and choking. I panicked and pulled his arm to remove the tube.
He started to get cross with me and said "I dont know why people consent to these procedures when they are so anxious".

The nurses tried to calm me and said they would give me more sedation. The consultant was pacing at the foot of the bed making me feel under so much pressure.
He waited about a minute after the second dose of sedation before going at it again. I still felt no sedation and immediately started gagging again and panicking.

He again showed his frustration with me and make the same comment again about why consent when I cant go through with it. He said he couldnt do the procedure now and would have to move onto the colonoscopy.

The next thing I knew I was back on the ward. The nurse came in and I asked if he did the endoscopy in the end and she said no. I was very upset and cried for about 45 mins (probably exacerbated by the meds).

I was so upset about the behaviour of the doctor, I cant believe he was so insensitive and unprofessional. The ward manager advised me to make a complaint about him.
The report he drew up said I was very anxious and despite adequate sedation the procedure couldnt be performed.
I said I might have had adequate sedation but I wasnt afforded adequate time to let it take effect. If he had to have awaited a couple more minutes after the second sedation, I would have been asleep.
I have to go back through the referral process again to have it done with propofol.

Just to add I was given midazolam and fentanyl. Not sure if it was M and F together the first time or just M first time and F the second time.

Sorry it didn’t work out op….hope you get sorted with a new referral

I'm really sorry OP. Clearly the sedation wasn't adequate if you were still very anxious what an absolute twat.

I hope your propofol appointment comes through soon. Despite the midazolam having no effect on me, I was completely out with the propofol and knew nothing about it.

If you wish I can recommend the private clinic I went to in London - where they use propofol as standard.

No messing about with sedatives that don’t work. They are also kind and understanding unlike the arsehole you saw - please do complain about him.

Perhaps start with “I don’t know why people go into medicine if they don’t care about patients”.

Very clearly you were not given adequate sedation - had you been the procedure would have gone ahead.

With propofol you won’t know a thing.

Oh my goodness…after al the reassurance we tried to give you as well. I am so sorry that it was such a bad experience- but that wasn’t your fault. It’s the fault of the consultant and lack of patience!!
I hope if you go again it is with a more caring consultant who handles you with a bit of respect. Shame on the one you saw at the weekend.
biggest hugs and still be proud because you tried!!
ps…is there a specific reason for this procedure?