To be terrified of an endoscopy...

[ShartOfGold]

Now I certainly know it's not the worst procedure to have done, far from it... but I'm absolutely shitting myself.
I need to have one done on Monday....

Anyone here had one done? Is it as bad as I'm imagining?

Another whose had one and telling you not to worry. I had a sedative injection before hand and a throat numbing spray. I'm one of those people who gag when I clean my back teeth, so I was a bit worried. I don't know for sure if the person doing mine could see when I was in the verge of gagging/coughing, but periodically be would tell me to cough gently. That seemed to work.

Good luck

OP are there other ways to test for it? Also, what happens if you are found to have it?

I'm asking because I recently had a battery of tests - which I should have refused, it was all stress related because my dad got ill and died - at the start of it, he was ill and I knew everything was stress related but stupidly went along with my doctor.

short version - they ended up testing me for everything under the sun and it added to the stress, came to nothing and then they marked me down as needing more tests - sorry I'm ranting... I have actually had to tell them I'm not having any more tests. Funnily enough my physical health is fine now I'm not rushing between hospital and hospice.

anyway, so, if the test is for something that can be diagnosed without an invasive test, or for something that doesn't require medication any way, you can say no. I have been utterly stunned at what they seem prepared to do in search of something that (in my case) would have needed altered diet and no meds anyway.

OP, i think you have to not drink/and or eat for a few hours beforehand. Check that out before Monday.

You won't suffocate - you also have a nose to breathe through ! Most endoscopy departments work like a conveyor belt, they do so many a day. The one I attended was really slick, but the staff were so kind and caring you still felt like an individual. They know people are anxious, they'll help you. The nurse was with me the whole way through, with her hand on my arm, checking all the time, watching, and letting me know what was happening.

I had one down the throat 20 years ago. Was done under sedation and I was out of it and felt nothing

I don't think they normally do it there and then. You see the consultant, discuss it and then get put on a waiting list if you agree to it.

Dd has it done recently, also for coeliac. She said it was ok, she had sedation but says she can remember it all. She was certainly awake when she back out the room and seemed very with it still.

If you have mild sedation you’ll barely know it happened :)

I have had both and opted for sedation with the endoscopy. I woke up after it had finished! I wasnt going to have sedation but they were running 3.5 hours late and I was so agitated the doctor said I had to have it any way! I could hardly argue with a tube down my throat.

The colonoscopy, the pre-op treatment was far worse than the procedure which you take at home. I had sedation but for some reason I suddenly came round and the staff said they could not give me any more. I could feel the camera going round all the twists and turns and it felt like burning rather than pain. They apologised for the procedure and length of time it took afterwards, but it wasnt any more than uncomfortable.

Good luck op. Do opt for sedation particularly as you are anxious.

You can download a patient information leaflet about the proceedure. I would recommend sedation. The sedation really makes you very relaxed. Make sure someone collects you and takes you home

I just looked up coeliac

would a diagnosis mean going gluten free?

why not do that first before the unpleasantness of this procedure?

Thank you everyone, I truly appreciate it.

@Grace212 there's no other way of testing for it. Unless you have a particular type of skin rash (which I don't) then they can do a skin biopsy instead.

I've already had the blood test for it which came back positive and 'strongly indicates' coeliac according to my gp.

There's no medications that can treat it, it's purely changing diet. Cutting out all gluten.

I am tempted to swerve the endoscopy and just see if changing my diet helps but the doctors are quite insistent on wanting a definitive diagnosis... which is why I'm in such a tizz, I really don't want to have it done 😭

It's already been 3 months since I had my blood test... I can't see them making me wait any longer for the testing so I'm guessing it will actually be done on Monday. But I'm very confused as to why I've not been told to fast etc.

@Grace212 very sorry to hear you had to endure so many unnecessary procedures

@Grace212 you can't cut out gluten before having the tests done as it can give a false negative result

I don't think they normally do it there and then. You see the consultant, discuss it and then get put on a waiting list if you agree to it

I didnt see anyone before hand. It was done the day of my appointment.

I have no idea why my previous post is all in bold 🤔

@Redglitter were you told to fast beforehand?

I got a letter with an appt, then a phone call with a nurse where we discussed sedation options.

I opted for no sedation but really really wish I had gone for it. Some people tolerate the endoscopy really well with no discomfort. I am NOT one of those people.

I would honestly take the sedation if offered.

I had one last year. Was utterly terrified, shaking with fear. No sedation at that clinic, just the throat spray.

You know what? It was OK.

The throat spray was very effective, I barely felt a thing swallowing the tube. No pain, no problems breathing at all.

It was uncomfortable during the rest of the procedure, and I could not help retching, but the nurse held me in a gentle, reassuring hug, stroked me and encouraged me. I was lying on my left side. The nurse was behind me.

Removing the tube felt weird, but was quite painless.

The throat spray made my voice a little weak, but I had no problem talking afterwards. It wore off within 30mins and I was able to have a drink.

I burped for hours after! They pump air into your stomach - very strange sensation.

If I have to have another I shall not be afraid. It's no more than unpleasant. It's not painful and does not affect breathing at all.

I hope this reassures you. I'm a dreadful gagger at the dentist, really feel like I can't breathe sometimes. But, truly and honestly, the endoscopy was no more than unpleasant.

OP yes the doctors are very insistent

I'm back at the GP on Monday for what I call my "sanity check" - I have depression and anxiety - and I'm girding myself for the conversation about the other stuff.

THEY want a definitive diagnosis via tests. That doesn't mean that you have to endure this if the only solution is changing your diet.

I realised they weren't going to quit with me when one set of tests led to another and another and another...then the specialist said to me that he was very surprised by the referral and clearly it was stress. it sounds mad, but now 2 months after dad died I can say clearly to the doctor that I have no physical issues - and the tests do confirm this but I remain pissed off that i agreed to them in the first place.

it's your body and your treatment. There is no way I'd have an endoscopy just to be told to go on a gluten free diet. If you want to refuse you have every right. It's not like they are looking for a condition that must be proved by a procedure because then they'd put you on medication and have to be sure of it or some such.

a few colleagues have had unnecessary invasive procedures, get a group of people together talking about it and it's pretty shocking. Then when someone actually needs one, it takes weeks - awful.

I’ve had one and honestly you will be ok.

I wanted to be sedated but was one of the last people for the clinic that day. The Consultant asked if we could try with just the spray and if I struggled or felt I couldn’t cope he would stop and they would sedate.
Well being honest by the time they had the tube in I just thought get it over with and suck it up.

It would’ve been easier had I been sedated as it wasn’t particularly pleasant (although not at all painful and didn’t feel suffocating at all, but I did gag a lot! Although strangely felt like I could breathe fine the whole time) the recovery would’ve been a lot longer had I been sedated whereas I was able to get up and walk out straight away past all the others sleeping off the sedative which was a massive bonus for me.

I had a lovely nurse hold my hand and talk soothingly the whole way though. She was really calming so once I realised I could still breathe ok I calmed right down (although still kept gagging)

I think it helps to remember everyone gags, you won’t be sick and it’s absolutely fine to gag. You will still be able to breathe and it doesn’t hurt at all. It’s over relatively quickly and if it makes you more comfortable you could have a sedative and know nothing about it all but I can promise you, you will be fine without one.

@ShartofGold I had a colonoscopy at the same appt so had to fast for 24 hours. So unfortunately couldnt tell you if fasting for endoscopy was needed. Sorry

I recently had one in September. I too was dreading it as I have the worst gag reflex ever. I chose not to have sedation as I just wanted to be able to leave the hospital straight away.

They spray your tongue and the back of your throat with a numbing spray first so that you don't feel the endoscope go down. I honestly have the worst gag reflex (I gag just brushing my teeth sometimes!) but I didn't feel it until he told me to swallow to allow him to pass through my oesophagus into my stomach easily. That did make me gag a little bit it was very short.

The worst part for me is when they were inside but it wasn't painful at all and I could breathe (the tube isn't big enough to obstruct your breath in) I could feel it moving around inside me and it was just a little uncomfortable but there was no pain at all.

You'll have a nurse with you at all times and they are brilliant and there to distract you. Once down, the endoscope is only inside you for couple of minutes and it's over with before you know it. It's not a procedure I would like to repeat in a hurry but it wasn't as bad as I was expecting.

Sorry if that's a little too much info - I really wanted some honest info before mine but I couldn't find any. I was told that they don't fully sedate you for the procedure though, more just make you light headed and less aware of what is going on.

Thank you everyone!

@ChocolateAddict93 thanks for sharing your experience! Very glad to hear you didn't find it too bad.
Feeling a bit braver now... with the odd wave of terror

I'm terrible for swallowing though (badum tish)

I've only recently learnt to swallow paracetamol without crushing it first 🙈
God I must sound pathetic.

In my experience, Chocolate post sums it up perfectly. The thought is so much worse than the reality. They wouldn't put a tube down your throat that left you unable to breathe - promise ! If you still feel really anxious just decide now that you'll go for the sedation. You'll need a lift home and to allow more time but you'll be aware of little or nothing.

It's all a reflex OP. They'll talk you through every step, what to expect, what to feel - you can do this.

Yes and I had it without sedative. You NEED to have a sedative. Honestly it’s fine......but you NEED the sedative

I panic about EVERYTHING, even the dentist. The second they put the Sedation in I just melted into bliss. Deffo get a ride home if you can!