To feel completely TRAUMATISED by this hospital experience

[Needaholidayasap]

3 weeks ago I attended hospital for an endoscopy. I was prepared and completely unfazed at the thought of it. I opted for throat numbing spray but no sedation or drugs to knock me out; I thought I could handle it and that it would be over before I knew it. I’m usually fearless and calm. The team were happy with this and said lots of people go without sedation.

it was absolutely horrific. I was trying to follow their instructions and swallow and remember to breath, but as soon as the camera went down my throat I completely freaked out and became hysterical, including trying to grab the camera to remove it. They removed it and we took a break to help me calm down and they stressed the importance of not pulling it out.

We tried it again; I panicked but managed to swallow the camera, but as soon as tube and camera were in my stomach I freaked out again. I remember hysterically crying and begging them to take it out, and simultaneously wretching and heaving (but bringing nothing up) and having very painful burps. It felt like forever but it was probably only a couple of minutes! I was almost screaming for them to get it out of me (between my tears, heaves and burps!) and I couldn’t understand why they didn’t. I suppose by that point it was easier just to continue the examination and i understand they can’t just rip the camera straight out, but it was the most terrifying experience of my life. I’m not an anxious person and I rarely panic, and I knew I could breath and talk, but I felt like I was being choked to death and my brain sent me ballistic. I vaguely remember trying to pull out the camera out again but I presume they stopped me as I wasn’t able to.

After they took it out I was shaking, sobbing and my heart rate was 170ish. I remember feeling the room spin and having a rush of emotions- mainly terror and embarrassment. I understand why they couldn’t just take it straight out, but I will never, ever get over the horrible panicked feeling that I was being choked to death.

The endoscopy team were absolutely fantastic and I’m not in anyway criticising them. I don’t know why I reacted this way as I’m usually fearless and totally calm, but I feel mortified by it. Will I have been seen as a ‘’nightmare patient’’ by them? I hate causing any sort of difficulty or disturbance.

Also, is it normal to still be affected from it 3 weeks later? Obviously I’m not crying about it everyday, but it keeps popping into my head about how frightened I felt and I’ve had some nightmares too. An endoscopy is a routine procedure so is it abnormal for me to still feel so affected by it when it was 3 weeks ago? Does anyone have any advice for me to get over this?

You poor thing, my type of feeding tube is place via an endoscopy. I manage all other medical procedures well, not this. Even with sedation I don't tolerate it, but thankfully only have hazy memories but staff have told me it's common for patients to panic. They now do it under general anesthesia for me. It makes me feel pathetic. Unfortunately every different hospital I attend always wants me to try without & because I feel embarrassed I do, just to have it repeated a number of days later when they can find a GA slot.

Give it a little longer to recover, keep reminding yourself that it is over now, you got through it & hopefully the memories will fade, mine did.

I had one about 3/4 weeks ago too and chose to be sedated so it was ok.

As I was waiting to leave they were rescheduling with a women who had not been sedated and they were unable to complete the procedure as she had been unable to tolerate it.

I thought at the time “blimey there is no way I’d have got through it just with the throat numbing spray”
so please don’t be hard on yourself.

the throat numbing spray pre sedation was the worst bit for me as the sensation of not being able to swallow was awful.

Haha there’s always one.

So because you just got on with it, no one else is allowed to have a different reaction to you? You sound like a loser

After reading this thread I do not understand why sedation is not recommended for the majority of people for this procedure. Obviously if there is a very sound medical reason for not having sedation - fair enough - but cannot help but feel people aren't encouraged to opt for sedation because of the additional cost and the fact they wouldn't be able to do so many procedures in a shift.

@TillyTheTeddy

Yes I mean a proper GA. I've had light sedation for a colonoscopy and I can assure you it did not knock me out. It was still very unpleasant but I managed to struggle on to the end. I drew the line when they told me I needed an endoscopy.

Maybe they were stingy on the sedation doses for me? Other people seem to have similar experiences!

I don't know why they encourage people to do this procedure without sedation.
I opted without and didn't get the camera much further than my tonsils before I stopped it and walked out.
Any cost savings must be lost on wasted appointments like mine.

Sorry OP it sounds a nightmare, I hope you feel better soon.

I was actually going to start a thread funnily enough (I don't want to hijack so will start a new one if that's better) but there seems to be knowledgeable/experienced people here - please could I ask a question? I have been told I have to have one of these and a colonoscopy too. Due to previous rape/sexual assault there is absolutely no way I could have this done even with sedation (in fact I think being semi aware/half conscious would be worse for me). I've not seen the specialist yet but the GP who has made the referral said I won't be allowed a GA as I'm epileptic. The GP was also an absolute twat and has made me more worried about disclosing this to the specialist.

I have a high pain threshold and have given birth without pain relief, so it's not that aspect that worries me. I don't want to hear about "womaning up" or it's worth the "discomfort" for your health etc please, I know there is no way I can have this done whilst awake or semi awake.

I had a colonoscopy and initially opted for gas and air. Managed to tolerate until they tried to go around the bend at which point I shouted out and the Dr said STOP and give her sedation. They did, it was still unpleasant but I somehow managed to get through it.

If you can't have a GA then I'm really not sure what the options are I'm afraid. I never knew that it wasn't a possibility if you're epileptic though, what is the reason for that? Or are they just trying to fob you off?!

I think I would have reacted in much the same way OP - and I'm also normally pretty brave and stoic! I have always had a fear of not being able to breathe (not even joking, stems from reading a horror book with a particularly nasty scene), I'm not even sure I could have that procedure done.

I had a colonoscopy recently - with sedation - and I cried I was so frightened. In the end it didn't actually hurt (me - I get others might have pain) and the results were there was no issue, thankfully.

No one wins a prize for not having pain relief.

I've never been in a situation where I needed a GA @GrandRapids
so was unaware of it. The GP may have been trying to fob me off, he was so unpleasant and dismissive I wish I'd never said anything and it's really put me off asking at the next appointment.

I've tried gas and air whilst having a bone reset but couldn't bear that either, I can't cope with feeling semi conscious and feeling pain, I'd rather just do without. It really did fucking hurt though! They did let DH stay with me which helped, but I don't think that would be an option here. I know he would be a support as I trust him and he makes me feel more secure, if that makes sense, but I don't think it would be enough. I also don't think it would be fair for him to watch me struggle with something like this, it would be distressing for him too I imagine.

Omg that sounds horrendous. Definitely worth asking for a second opinion re GA though. I mean what would happen if you needed a really serious operation?!

I'm a SaLT and I used to train medical and Speech students - I have had a number of endoscopies and nasendoscopies (camera via nostril)with just the numbing spray, and some without even that so that my the students could see what was happening in the larynx and below. It's not pleasant, but I got used to it. I found nasendocopy less traumatic - I have a very strong gag reflex and would heave until the camera got to a certain point. I've also been trained to carry out endoscopies/nasendoscopies on others.

I think it's completely reasonable to feel as you did - in fact it is a survival mechanism. Any foreign body entering your larynx like this is a potential choking hazard, especially when you are unable to either swallow it or cough it up. Please don't worry about your reaction - the team won't be phased at all and will know how to treat you the next time (if there is a next time - hopefully not).

My boss used to demonstrate on himself if I or another mug another therapist wasn't available. Never tried that, though, and nor would I want to . . . 😬

I totally sympathise OP that really sounds awful and no one can prepare you for something you haven't experienced (however I bet you now wish you had posted a thread asking for advice BEFORE the procedure!). I'm sure those of us reading are grateful for the heads up!
I think it will fade in time like the memory of pain, I wimped out of a smear recently and had to return a few weeks later and go to a different clinic as the pain was too bad to tolerate.
There don't appear to be many people who were fine with just the local anaesthetic spray so that tells you all you need to know.
Hope they managed to get the samples or look they needed at least.

I had one without sedation because they told me that they wouldn’t be able to discuss it with me afterwards if I had sedation and would have to wait for a follow up appointment. The second time, at a different hospital I opted for sedation as the first experience had been horrific. It was an absolute doddle and they discussed the findings (hiatus hernia) after I had come round and had a cup of tea.

I am not surprised you feel traumatised. It sounds like a terrifying experience. Your feelings are absolutely legitimate and understandable. xxx

Re the sedation. It really only temporarily knocks you out for a few seconds then relaxes you. I chatted to the nurse who was assisting all the way through a colonoscopy. It certainly wasn’t a feeling of being half awake.
However, the amnesia post op means I remember very little discomfort.
It is ok to have a GA when you have epilepsy, I would discuss it with the consultant.

I understand. I was supposed to have a brain MRI but I'm claustrophobic and panicked as soon as I got into the machine. I couldn't put myself through it. 4 months later it still hasn't been done. I tried to refer myself to a place with an upright scanner but I feel like I've had a brick wall put in front of me and nobody is responding to any messages.

You've got through the procedure. Be proud of yourself for that.

I had one 10 years ago and to this day it is the single most horrific medical procedure I have had and I recently gave birth!!

I also didn't have the sedation but could hear the person before me having an endoscopy WITH sedation and it sounded just as horrific. I asked if my partner could come in to comfort me (hold my hand) and they said no and then I had to close my eyes to prevent myself from watching my insides shown on the large screen in front of me. To this day I can still feel the initial sensation of the tube going into my throat and then snaking through my stomach. You are not alone!

OP I can completely understand and sympathise.
i had an endoscopy almost 20 years ago WITH sedation.
I ‘came round’ in the middle of the procedure when the camera was in / going down. Felt like I couldn’t breathe at all. Massively panicked but due to the sedation I felt like I was paralysed. Couldn’t move arms or legs. Couldn’t speak or make much sound other than horrible gagging but felt fully awake.
The sensation of the tube being in felt absolutely horrific and like I was going to choke / not be able to breathe.
I remember they were trying to say calm down and breathe through your nose but I just couldn’t but couldn’t move to get the tube out either.
I had nightmares about it afterwards. Kept bursting into tears in the following days. Had a sore throat from it and every time I swollowed it took me back.
I can still vividly remember it now.
I was told by family members who had sedation for it that I wouldn’t remember it and would just wake up at the end. Not true in my case at all.
Would never ever have another one unless under GA.

I am the same as the majority of you here. I had sedation and still fought and tried to get up and pull the tube etc. Mine was a bronchoscopy, during mine one lung started to collapse which was awful as I suddenly couldn't breathe. I was advised to have a GA if I need another.
I feel for you, OP. Just reading your experience and others here has stressed me!

@Lanareyrey she has not been diagnosed with ptsd which is a complex diagnosis.

op they are bloody horrible. I had sedation and can remember bits. I just had to keep saying to myself it’s better to get the all clear (they suspected ulcer) than have an untreated potentially dangerous condition.

Please don't beat yourself up OP. This sounds horrible. I have never had one but I would have to have the sedation, you were very brave to try without and it didn't work for you - no shame in that. Can you repeat the test under sedation. Please don't worry, health care staff have seen it all before. Even people crying and hyperventilating over a simple blood test - so what you went through was far worse!

I want to give you a massive hug, @RosJ

I’m sorry this happened to you OP. Completely reasonable to feel violated, they are violating, literally, and horrible.

I’ve had two and both were without sedation, so clearly I am a glutton for punishment. I chose not to have sedation as I hated the idea of being out of it in a medical setting and didn’t have anyone to go with me. I also had to walk there and back to the hospital the second time which was three miles each way and then look after the small kids when I got home so just for practical reasons.

I don’t think about the procedure much but I do have panic attacks thinking about dentists, I currently have toothache but I’m too scared of needing dental work to go and get it seen, I can feel my heart rate rocket just thinking about it. Be kind to yourself, you did nothing wrong, it was just awful and awful things can linger in the mind.

I am sorry to hear of OP and other people's traumatic experiences with endoscopies. I am terrified of anything going down my throat (apart from food and drink lol) so when I needed one I was not a happy bunny.

When I was with the consultant I asked about sedation. He said absolutely, unless there are contra indications he gives it to everyone, makes it easier for both practitioner and patient. I had throat spray, midazolam and fentanyl. I just remember them putting a mouth guard in and woke up in recovery. I had colonoscopy a week later, and same sedation. It worked brilliantly, and there is absolutely no way I would put myself through such procedures without sedation, EVER. I am not a martyr and believe the easy way is the best way.

I know some do it drug free due to committments they must fulfil on the day, but quite honestly I would just cancel everything and get the job done in the twilight zone!

Consultant has asked if I would take the Pill Cam for the next one in a years time. You just swallow a pill and it has a camera that does the job that the tube down the throat. Sounds good. If I go for it I'll let you know.

www.nbt.nhs.uk/our-services/a-z-services/endoscopy/endoscopy-patient-information/what-capsule-endoscopy