Support please - endoscopy fear

barefoot

Sponsor
I’m having an endoscopy (camera down the throat) on Wednesday. I’ve already arranged to have it under the heaviest sedation possible. It’s meant that I’ve had to wait longer to have the procedure, but I think it’s worth it.

I don’t cope well with doctors/medical procedures (esp invasive ones)

And I don’t like things being in my body.

And I am weirdly phobic about my throat. I can’t hear people touching it. I don’t like touching it myself. I have, for as long as I can remember, have an irrational fear of my throat being cut open and my throat kind of falling out. It’s extremely anxiety-making once I start thinking about it - and then hard to stop.

I’ve been ignoring the endoscopy ever since I told the consultant that I have ptsd, medical stuff is triggering and that it’ll be easier all round if you give me the heaviest sedation possible…and he was very kind and said that he will arrange that. So that’s what’s happening. So, job done on that front…have been avoiding thinking about it ever since. But now it’s happening the day after tomorrow and the anxiety is kicking in and I’m aware I need to wrap my head around it so I’m prepared and not spooked when I get there.

Would usually have a therapy session ahead of a procedure to talk things through and get prepped. But no therapy session as my T has had to take some leave for a family issue.

When my throat anxiety is in overdrive, I clear my throat a lot, gulp a lot and feel like I need pressure on my throat so that it doesn’t feel like it can just drop out. I know this is stupid… I’ve been sitting wearing a neck warmer/snood thing all night so that I can feel some compression, which feels safer. And my wife and I have been ignoring the increasing coughs, throat clearing, funny noises from my throat that kick in sort of compulsory when this gets bad.

I’m now in bed. Still wearing the snood and keeping my chin down so my throat isn’t exposed. Have taken 2 valium.

I’ve written in another thread about thinking about ending therapy. But that aside, I am finding it difficult not having her to talk this through with. She is generally very calming about these things and helps me come up with a plan to feel more in control and less afraid. And she doesn’t make me feel awkward or embarrassed about the compulsive throat noises. So, I miss not having her to help me with this.

J am very worried about having a throat spray. I don’t want my throat to go numb. I don’t want to not feel it. To not be able to swallow. I am in a tearful panic just thinking about it.

I thought if I was having heavy sedation, I wouldn’t get the throat spray. But now, having looked online (worst thing I could probably do!) it looks like I will have both. Throat spray first, then the thing put in my mouth, then the sedation.

Also panicking about the cannula going in. The very thought of it makes me want to run. It’s very triggering. But I have had it recently and, of course, survived!

Because of covid, my wife can only drop me off. She cannot come in and wait with me like she usually does.

I’m in a tizz.

And that’s not even thinking about what they will find.

I wish I wasn’t such a wimp with this stuff.

Anyone who’s had an endoscopy with heavy sedation - any tips? Or any reassuring, positive stories?

Or any tips from anyone about getting the squeamish throat thing under control? I’ve never met anyone who really seems to know what I’m talking about when I talk about my throat phobia/intrusive thoughts about my throat being cut and gaping open. People usually just look at me like I’m mad. I can’t seem to stop it tonight :(
 

Teamwork

MyPTSD Pro
Same or very similar fear. The oddest thing helped me and it was an accident so I did not even plan it the way it happened. My fear was anyone going down the throat and the camera also was a huge trigger. The day before the procedure I accidentally dropped something of great importance to me down a hole in the wall of my bathroom. I phoned a friend who came over with some tools. One of which was a wall camera but he never said that when he took it out to use it to see inside the wall to get the object. I calmly watched the whole thing and was amazed when he retrieved it successfully. Only after he left did I realize that he did an extraction from the wall with a device that I was terrified of. I knew the whole retrieving them item incident was no coincidence and that this happened for a reason. Because of covid I had to do the procedure myself too. What ended up happening was I came up with a strategy of a checklist in my head, so that everything I did became a check box that I mentally checked off. I just said to myself, there that is done, check the next box off. This wasn’t planned but it doid work and I went from one thing to the next. Tell the person my name, wait to be called, get changed etc. I was calm and in the end once they put me out I knew nothing and made it through with no phoni response or memory of it. The doctor knew about it but was less than kind about it. He started attributing my illness to, oh you don’t want anything in your mouth so that is why you are losing weight, having trouble swallowing , does your psychologist know about this? He upset me a lot with his switch from medical to this is all in your head crap. I’m glad yours is reassuring and because of that you will do fine and not remeber it. You just need to get there and start checking each box off knowing, saying your name is an easy box to check off. Wishing you well!
 

barefoot

Sponsor
Thanks @Teamwork - sounds like you created a very positive experience for yourself.

A list is a good idea. I’ve sort of done that in broad terms but getting into each tiny step is probably better, so I’ll do that. Though that itself is quite stressful, isn’t it, because it involves thoroughly thinking it all through. But I guess some stress up front to save a shit storm later is worth it!
 

scout86

MyPTSD Pro
Throat spray first, then the thing put in my mouth, then the sedation.
I could be wrong, but it seems like they'd do the sedation first. Especially because you've already told them you have a phobia.
and helps me come up with a plan to feel more in control and less afraid.
So, what things help you feel more in control?

I don't have this same phobia, but I've got a medical phobia of my own, so I can definitely relate. It's NOT stupid and you're NOT a coward, or any of the other negative things you're probably telling yourself. It's JUST a phobia. Not something you came up with to maliciously complicate the lives of your medical providers. I'm hoping the people you'll be dealing with all understand that, it's been my experience that that helps. I'll be thinking of you and hoping things go well! (Both before and after the procedure.)
 

barefoot

Sponsor
I could be wrong, but it seems like they'd do the sedation first. Especially because you've already told them you have a phobia.
By 'putting the thing in my mouth', I meant a mouth guard thing, not the actual camera. I'm hoping the camera goes in and down after the sedation! But I'm not sure if you need to swallow as the camera goes down? I told the consultant I have PTSD and that doctors and medical procedures are triggering....didn't tell him about my throat phobia because I can't ever think of a way to say that without sounding totally nuts! Perhaps I need to say that when I first see the consultant....I think they do early rounds to see us all before they then start everyone's procedures, so I think I will get a chance to speak to him – and perhaps also the anaesthetist – before the procedure itself.


what things help you feel more in control

Good question.

It's usually things like communicating things ahead of the procedure and advocating for myself. So, I have done some of that already – telling the consultant these things are triggering and insisting on having heavy sedation in theatre, which is not the norm for these procedures. And he has arranged that for me.

I probably need to write down some things I want to say to consultant/anaesthetist/nurses so that I can refer to them in the morning. Being able to speak up and self-advocate has been a big part of work with my T around these things....I tend to freeze and my voice gets hijacked. So, communicating ahead of things is important....but I have to keep myself calm enough to be able to do so. Having a throat numbing spray freaks me out because I won't be able to speak. Which is a bit of a moot point as, under heavy sedation, it's not like I'll be alert and chatty anyway! But the 'not being able to speak' bit is anxiety-making.

I probably need to think about a few things I can take with me that might be calming/distracting. And remember to do some breathing exercises if I get stressed...



It's NOT stupid and you're NOT a coward, or any of the other negative things you're probably telling yourself. It's JUST a phobia. Not something you came up with to maliciously complicate the lives of your medical providers.

Hmm...yes...there are quite a lot of those types of thoughts at the moment...

I'll be thinking of you and hoping things go well!

Thanks :)
 

Friday

Moderator
Anyone who’s had an endoscopy with heavy sedation - any tips? Or any reassuring, positive stories?
The last time I had an endoscopy I was in the ICU. (Perky little flu a few years back).

Wheeled down to the procedure room, sedated, woke back up in my room several hours later.

That simple.

Come to find the procedure itself was quite eventful for the staff… but I was unconscious for the whole thing.

***
Any time I KNOW I’m being sedated? I talk to the anesthesiologist and get a benzo Rx to start the night before. Because I’ve got this wee bit of a great honking big deal set of issues with various aspects of medical anything. They give benzos during the sedation, and writing an advance script -I’m told- helps with their math, in no small part because their patient isn’t having an anxiety attack when they start, so they can use lower/safer doses to achieve the same effect. Every time I talk with the anesthesiologist ahead of time? They get all excited. 🤣 They’re fun people almost as a rule, but they just seem to SPARKLE when they “get to” coordinate in advance. I think, out of all my surgeries, I’ve only ever had one sour puss anesthesiologist? Seriously great group of docs, as a rule.

I also write messages in sharpie on my body (surgeons kid 😉, yes it’s all in the chart, but since I’m out -and bossy- I like to make sure they know YES to 5 point restraints in post-op, NO to versed & hydroxyzine, key allergies, etc.) to various team members. Aaaaaaand slather enough Vaseline on my lips to leave me balmy in the Sahara.

But even “we need to do an endoscopy” and 2 hours later I’m counting backwards from 10? No kicking it with anesthesiologists, no notes to the post op team or surgeon? The only hard part was the waiting for it to happen.
 
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Teamwork

MyPTSD Pro
Thanks @Teamwork - sounds like you created a very positive experience for yourself.

A list is a good idea. I’ve sort of done that in broad terms but getting into each tiny step is probably better, so I’ll do that. Though that itself is quite stressful, isn’t it, because it involves thoroughly thinking it all through. But I guess some stress up front to save a shit storm later is worth it!
I wouldn’t do a list. Just do a check box In your head. so I had to check in, do the covid screen, check, change mask to theirs, check, sanitize hands, check, listen to how to get there instructions check, repeat in my head because I feared getting lost, check, elevator wouldn’t work major anxiety fixed it by asking what to do, praised myself for asking for help and not quitting right then and there. So as you see everything I did I reassured myself, that was easy what’s next. As to throat spray they did not use it, but did put a bite block in which I did not know about then out by it.
 

barefoot

Sponsor
Wheeled down to the procedure room, sedated, woke back up in my room several hours later.

I was unconscious for the whole thing.
This is exactly what I'm hoping for!

I talk to the anesthesiologist and get a benzo Rx to start the night before.
The night before is in a few hours time, so won't be able to speak to them at this point. But I do intend to take a diazepam before I go to bed tonight. I have to be at the hospital at 7am tomorrow, but don't yet know what time the procedure is. If I'm going to have quite a wait, I could speak to the anaesthetist about whether I could take another one (or whether they could give me anything) while I wait, if needed. When I had a colonoscopy under heavy sedation at the same hospital a couple of years ago, they wouldn't allow me to take anything or give me anything like a pre-med on the day while I waited. But we'll see.

They’re fun people almost as a rule
Unfortunately, not my experience at all – perhaps I will be lucky tomorrow!

Aaaaaaand slather enough Vaseline on my lips to leave me balmy in the Sahara.
Good call!

I wouldn’t do a list. Just do a check box In your head
Gosh...I can't hold all that info in my head, esp when under stress! Perhaps I'll just refer to yours :-)

As to throat spray they did not use it, but did put a bite block in which I did not know about then out by it.

Good to know, thanks. The throat spray is actually the thing I'm most stressed about so it will be good to find out asap when I speak to the consultant whether I will even have to have this. If he confirms no, it will probably make the wait a much calmer one.

@Friday – no throat spray for you either?

Thank you both – appreciate you sharing your experiences.
 

Warrior Chicken

MyPTSD Pro
I had an endoscopy a few months ago, have issues with anyone getting anywhere near my throat, and with partial sedation.
One of the methods I used to set myself in the right frame of mind was that I was giving myself an opportunity to address my anxiety and heal from it. Not confronting it only perpetuates it (what I repeated to myself). Because of Covid, I also had to be dropped off and enter the hospital on my own.
I also used a step-by-step check-list idea like @Teamwork, even when I didn't know about the step beforehand - I took it as a goal to complete.....and they were all small steps so I found it manageable.

After the fact I can smile about how many staff walked past my little curtained room before the procedure and noticed me standing on alert like I was ready to bolt. They all informed me that it was ok to sit. I also have trouble advocating for myself, so this was a great opportunity to not do what they said but instead do what made me most comfortable and respond with "I'm ok, I'd prefer to stand"

As for the procedure, I didn't trust that they'd put me out enough so I re-iterated to the Doc that they talk to me about what they're doing before they do it once I'm in the procedure room and it's a good idea for everyone's safety if I'm unaware before they go anywhere near my throat. I wasn't shamed or judged for any of that, the Doc thanked me and said the information allows him and his team to give me the best level of care.

Knowing that I would react poorly if not sedated properly, I made a game of trying to fight the sedation as long as possible. That didn't last long! Lol
I don't remember anything, nor even much for a while after. When I started to regain awareness I was already dressed and my husband was there, it was a pleasant feeling for the rest of the day/evening and I went to bed early.

They did use a bite guard - that's they only thing I had to help them with as far as being conscious.
They did NOT use spray to my knowledge.

I know how difficult it is, and I'm sending you courage and strength. You got this!!
Let us know how it goes.
 
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