Endoscopy

I'm wondering if anyone help me, I had a endoscopy yesterday and. It was the worst experience of my life, I had three ml of sedation and oxygen tubes in my nose that was all, I felt every single twist and turn I was in so much pain and in years, I had to sit up for them to stop. For the nurse to calm me back down, and for the doctor to say do I want it done or not. So I tried again, and still I wasn't sedated and the sedation hadn't kicked in, still I felt wide awake and still felt everything. I felt them take the samples, I was crying, booking, I couldn't breathe, and I was been sick with they never considered any of this and just wanted to get the job done and the next patient in or so it seemed, it was the worst experience of my life! I already told them I was scared, I don't no what to do about this, is this normal for them to treat me this way? I'm thinking of getting intouch with the hospital

19 Replies

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  • Sophie, I'm so sorry to hear you had such a nasty experience. You were just very unlucky.

    I'm sure the doctor and nurse didn't mean to be unkind. But it was important to get the job done. It sounds as if the sedation just didn't work. Was it an injection in the back of your hand? Maybe the needle wasn't in the vein properly. I'm just guessing.

    Not anywhere near as nasty as your experience, but I once had an injection in my gum to numb a tooth which numbed my eyelid closed instead.

    What is really matters is you've had your endoscopy done.

  • Yes it was in my hand, it was a horrible experience I hope to never have it done again, it's haunting, yes maybe so but I tried sitting up and telling him it hurt and I could feel it I wasn't one bit sedated I'd never been sedated in my life neither have I had this done, but I felt normal and wide awake, I hurd everything that was said, they don't have very nice manners either to be truthfull. Nurses was lovely main doctor just seemed to want to get me in and out, I've never been.scRed of feeling strangled in all my life that's how it felt. Like say first time I couldn't breather and sat up second time. They bazicallyhad to hold me down while I was been sick and chocking, was realy horrible

  • I've had my tooth taken out, I think I'd rather have my eye lid numbed. I've had a back tooth taken out and they haven't numbed it enough, I'd rather have that dine any day, I also felt them take samples to

  • Sophie so sorry to hear you had such a bad experience but remember it can be life saving. I was diagnosed with Barretts oesophagus in 1999 when I had my first endoscopy. This was not a great experience as there was no sedation offered just à throat spray, but I managed.

    I was put on a surveillance programme and had annual endoscopies until 2013 when changes were noted and I was put on 6 monthly surveillance.

    At the second of these a cancer was discovered which was at a very early stage.

    I received excellent treatment at UCHL and after removing the carcinoma using an endoscope I had ablation which removed all the Barretts.

    I am now back on annual surveillance and clear for over 18 months.

    I have had endoscopies with and without sedation, sometimes the sedation doesn't work as well as others. I would certainly raise it with the hospital and try to ensure that if you need another endoscopy you get better sedation.

    I hope the results are good, but if you need more treatment please ensure you get it.

    All the best

    Bob

  • I would say that this is not the norm, certainly not in my experience. I am into double figures with these procedures now, including several stretches of my stomach and throat. On each occasion the last recollection I have is the mouthpiece being placed in my mouth and then me waking up in my bed with absolutely no pain, discomfort or memory recall.

    I stated day one to my surgeon and the others who have done this that I want to be out of it. I make sure that I repeat this on each procedure. I have never once met any resistance to this approach. Indeed on one occasion the doctor commented that they would "whack it all in".

    I do not like the "banana spray"as I can't feel my throat for a few secs before I go out. But that is no big deal as "go out" I do and happy I am to do so.

    I would write to the hospital and explain your alarm at what happened and seek assurances that they will knock you out next time.

  • OMG--that's barbaric! I've had a few endoscopies and have been completely sedated for each one. I would NEVER go back to that hospital or surgeon again if I were you!!!! I would also file a formal complaint!

  • I agree completely with pegcburke. When I first had an endoscope many years ago, I was put out and never knew anything about it. This year they tried the throat spray but I couldn't tolerate the procedure and it was abandoned. The second one, this year, was with anaesthetist present and I went out for the count. I don't intend to have another one without anaesthetic - I will pay privately if I have to! It is a barbaric treatment.

  • Hi Sophie, I was somewhat shocked at your treatment which is similar to my first ever experience of an Endoscopy, this was conducted way back in 1980. I was diagnosed then with Barratts and put on a screening programme which lasted until 2009 when I was diagnosed with cancer and had an oesophagectomy using Ivor Lewis method.

    To put your mind at rest though - during the other 50+ endoscopies I had ( 1 every 6 months) I never received any where near the same kind of treatment and was, on each occasion, 'out of it', as has been said previously.

    I made it plain that I would not go through this process again unless I was completely asleep.

    Every surgeon I saw after the first episode was great and I have nothing bit praise for all of the staff in the endoscopy suite ( I got to know them well ) all I can say is that you probably got the surgeon on a bad day - whilst it does not justify what he said and did it should be remembered that he is only human and they are all under severe pressure to do these almost as though it is a processing line.

    I do feel for you but please do not be put off having these done regularly - even if the result one day is bad news -if it is caught early you can make a very good recovery but not to have them done at all, if you are at risk, is tantamount to playing Russian Roulette with several bullets in the chamber and I never liked the odds of that game.

    best regards

    Ray

  • Hello Sophie, I sympathise utterly with your concern over endoscopies, I had my first one about seventeen years ago and I had a similar experience with two people holding me down whilst the third carried out the procedure it was a nightmare and no one had even mentioned the choice of sedation, just the throat spray.

    About twenty months ago I had to have another endoscopy and that was just as bad, I swore that I would never have another endoscopy, the person who carried out the procedure was just as yours and couldn't have cared less about my discomfort. I came away traumatised and swore that was it, it took me days to get over it. Unfortunately they discovered abnormal cells on the biopsy and I had to be booked in for another three weeks later. I flatly refused to have it done unless I was under a sedative, and as Bruce says I awoke afterwards with no discomfort or trauma.

    The second one confirmed it was cancer and I have since had an IL two part oesophagectomy which was successful.

    Unfortunately whilst I was still in hospital I had to undergo a pyloric stretch which is a very similar procedure, instruments down the throat whilst your gagging and they said they would give me sedation, but when it came to the crunch the Doctor wouldn't give me a sedative and was quite brash and dismissive of my discomfort and I was once again traumatised by it. These people should have to have the same procedures carried out on them and then perhaps they would be a little more sympathetic to the problems ordinary people have with this level of discomfort.

    When I complained afterwards they said that post operation there was so much anesthetic floating around in my system after a fourteen hour operation that if they gave me any more it would probably kill me. I just hope I never have to have it done again!

    So don't think you are on your own with this, there are a lot of us with similar experiences to tell. Just be firm and insist on sedation, and once again as Bruce said above, make sure you keep repeating it to them just to make sure they haven't forgotten.

    Good wishes and the best of luck with everything

    Richard

  • Hi Sophie,

    I am sorry to hear what you went through! Especially since it could now mean that, if you DID have abnormal cells or a cancer diagnosis - now or in the future, you'd be reducing your chances of early detection (which, in turn could lead to a worse outcome) if you decided never to have another done? I totally get that you feel angry - but, on a more practical level, you don't say what the outcome of the Endoscopy was? They should have given you a short report. Is any further action necessary? I felt similar once when, just as they put the scope down, I, involuntarily, pulled it out. The Nurses 'jumped' on me and told me to lie still as it still had to be done. I did the same the second time - not by choice - BUT, because the tumour was too bulky and he couldn't get it down my oesophagus. It did feel like assault - BUT I was really grateful that it was done since I did have advanced Oesophageal Cancer (OC), though, luckily for me, no spread.

    My hospital's instructions advise that the sedation is only enough such that you can still take instructions, i.e. you're woozy but still with it. Yes, you can feel the scope inside you but it shouldn't be painful. Sometimes, depending on how quickly they put the scope down/pull it up, you may burp with trapped air.

    In view of the trauma you experienced, I'm not sure if the following will help?...... I've had 17 endoscopies now with no bother - throat spray only, having learnt to take a couple of swallows just as they're putting the 'scope down the angle at your throat. It means I don't gag. I just stay calm and breathe normally. I didn't complain to PALS - which is your right - as I was so pleased that they could treat me - and grateful I lived to tell the tale.

    As the others have said, it sounds like you didn't have a very sympathetic Endoscopist that day. Do please think twice though, should you NEED to have another - it is most definitely worthwhile/necessary, whatever the result.

    Best wishes to you.

  • I agree with Bruce, Peg and Seagull. I've had four endoscopies. The first time, I didn't have sedation, and it was unpleasant but bearable. The next three times, I did have sedation and knew nothing about it. You should consider making a formal complaint.

  • No, this is not normal. I had an endoscopy in 2014, was sedated, and 'slept' through the procedure. Sounds like you were not treated well. So sorry you had to experience this test, in the manner that you did.

  • You should have been sedated. I've had numerous endoscopes, that's how my cancer was diagnosed. It's disgraceful that you had such an unpleasant experience. Having said that my sister had an endoscopy recently and she had an anaesthetic spray applied to her throat, in went the tube and the who thing was over in 5 minutes. I think it best not to dwell on the negative experience. Yes, write to the hospital and give them objective feedback on your experience. It is important that you stay calm and put this behind you because if you need any future treatment you will keep recalling this negative experience. In future get the procedure done in a hospital or specialised clinic and insist on a mild anaesthetic. I think you had s bad experience but don't let it affect your future treatment should you need any. Hope this helps.

  • It's left me never wanting that again it's horrified me, scared me in fact I was crying all through the procedure and been sick, it's a memorie I will never ever forget the surgeon Leady news was scared stiff, I would never in Ll my life get that done again ever!! That's how horrible it was, I felt everything, I was wide awake as I am now righting this, after procedure I wanted twenty kins and went home as normal, could of walked home n still been ok, I've told my familybutbthey just think I'm been dramatic bit it was realy horrible,

  • Sophie

    I really would urge you to to speak to the consultant(s) and insist in on being sedated, as in knocked out sedated. In that circumstance you are aware of nothing and feel nothing, before during or afterwards.

    My surgeon has been wonderful in listening to what "I" want and how "I" feel. We have just recently discussed this exact procedure as I failed to notice any difference between "sedation"and "anesthetic "?

    He tells me that sedation is akin to a very deep sleep, where you have no awareness but are not actually unconscious.

    I say again. In my experience and that of others on here. With sedation (ask for the full whack) you will have no recollection or pain.

    I see myself as a veteran of this stuff now, to the point where I try to stay awake to a point that I will remember something of the procedure. On every occasion my last recollection is always the nurse asking me to bite the mouthpiece. I then wake perfectly refreshed, have the food offered and get the tube and train home on my own feeling great.

    It is so vital for you and your well being that you speak to the medics and hospital and gain their assurance that they will sedate you. This is not an uncommon ask from patients who have had a poor experience and most consultants are more than happy to accommodate it. It is less stress for them and the theater team if you are asleep.

    Do not allow this experience to define your future.

  • I started a thread about this some time ago. My first 2 endoscopies were done privately (when I had health insurance through work), both with sedation. I was aware of the procedures being carried out but was totally relaxed and I experienced no problems at all. The results showed Barretts Syndrome, which meant two-yearly procedures in the future.

    But the third was carried out on the NHS. I was given sedation (huh!) and the throat spray and I was not at all concerned until the surgeon shoved the tube down. This was totally horrific, the nurses had to hold me down and I was gagging uncontrollably. One nurse suggested some more sedation but the nasty little man said "no, just get on with it". I was really traumatised.

    When I needed the next one I explained to the consultant (a different one, but obviously of the same callous disposition!) that I wanted a decent level of sedation. He said he would only give 3mg, at which point I posted my first thread here.

    I cancelled the procedure, loaded my credit card with £1200, travelled 100 miles to see my original private consultant (we had by this time retired to the coast) and he gave me a GENERAL anaesthetic. Wonderful! I knew absolutely nothing about it. Luckily there had been no significant changes in the oesophagus.

    So I'm saving up for the next private procedure. I don't care what the risks are - no way will I go through that NHS trauma again! If it turns cancerous and I have to go back to the NHS for treatment I'm really not sure whether I will do so.

    So I totally sympathise with you. I hope you can find a solution for next time - as you can see from the replies our experiences are determined by the attitudes and abilities of the medical professionals. The solution must be to withdraw consent unless decent sedation is guaranteed.

  • I had an endoscopy last Thursday and like you could feel absolutely everything. I had sedation and the spray but was aware of the tubes in my throats and could feel them taking the biopsies. I heard everything they were saying and before the endoscopy he warned me that if I tried to pull the tubes out they would immediately stop the procedure so I just lay there silently panicking and daren't move. I heard him say Barrett's and hiatus hernia and told the nurse to get the leaflets and attach to my file, etc. I had one about five years ago at a different hospital and did not remember anything. I was wondering if they give you less sedative to get you out quicker and the next patient in! I am waiting for my biopsy results and I will certainly mention this when I go to my next appointment as I am terrified of having another one and I have to have them yearly now.

  • I am so sorry to read of these horrible experiences .

    Please talk to the hospital - write to the consultant /contact PALS .

    Be clear what you want - that the staff should be kinder /more professional ,that you are reassured that your next endoscopy will be trouble free .

    My first endoscopy was awful ,horrible consultant ,and I suspect the sedation was not long enough acting .Since then I've been at pains - with MUCH nicer staff to explain my fear of a repetition of my first experience .And all has been well .

    Sophie I wonder what sedative you were given ? I think Midazolam is often given and I notice that a few people can react badly to this drug .Wikipedia says

    "In susceptible individuals, midazolam has been known to cause a paradoxical reaction, a well-documented complication with benzodiazepines. When this occurs, the individual may experience anxiety, involuntary movements, aggressive or violent behavior, uncontrollable crying or verbalization, and other similar effects."

    My first endo I had 3.5mg of midazolam .Bad...

    Subsequently 5.0mg of Midazolam + 50mg of Fentanyl. Good...

    It would be good to have a consultant explain sedation for endoscopies - I think a kind of waking sedation is required and that the sedation has to be topped up as necessary as they procede..

  • Hello Sophie,

    I had the endoscopy without sedation and no problems, I wonder if you were very nervous and did not breath as the camera does not block your breathing. Its harder to say than do.

    Please try again with either sedation or spray, good luck it sounds like you were not properly sedated.

    Kind regards & many hugs

    David

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