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Severely, severely scared about standard procedure

(55 Posts)
whimperinginacorner Thu 15-Nov-12 15:49:36

Just putting this out there because I am so scared I frankly don't know what to do with myself (honestly not exaggerating) and need help/collective wisdom of Mumsnet/coping strategies.

I know I need a large kick up the arse but I have delayed having an endoscopy/colonoscopy since October 2010 out of extreme fear.

Since then the symptoms have got worse (I have many of the symptoms of cancer of the oesophagus and am convinced I have it. My father died of it. My cousin is currently dying of it sad. And in addition to nausea, regurgitation/acid reflux, I can now feel something at the back of my throat and a fortnight ago, spotted a creamy white patch or lump behind my right tonsil.)

So I have made another appointment (in 10 days time) to discuss the above and already have a space booked for the endoscopy/colonoscopy at the beginning of December, but despite the fact that the fear of not knowing is almost approaching the same level of fear about the procedure, I honestly don't know if I can go ahead with the latter.

If this was the history of someone else I would be screaming at them "of course you must go and have it done you nutter" but I am so terrified at the thought of having a tube put down my throat that I am currently a gibbering wreck; I don't seem to be able to focus on anything else and am almost paralysed with fear - can't function normally. Just making the appointments on the phone caused extreme nausea, shaking, sweating. How on earth am I going to get through the actual thing?

whimperinginacorner Thu 15-Nov-12 15:51:20

Sorry. Have just re-read the above and know it comes across as dreadfully self-indulgent, particularly given the things other Mumsnetters are going through with severely ill dc etc. But I don't seem to be able to help it.

Need some coping strategies. Please.

TheLightPassenger Thu 15-Nov-12 15:54:41

Sorry to hear about your father and cousin. I have no personal experience of these procedures, but would suggest you discuss your fears with your GP (if they are supportive in general) or the department who has referred you for the scope, so you can talk through what, if any, sedation options might be appropriate, or whether you could take valium before the procedure.

Best wishes

TheAccidentalExhibitionist Thu 15-Nov-12 16:05:46

Ah I understand your fears whimpering.
I'm due to have an endoscopy to check whether I have a stomach ulcer. The country that I live in uses a self refer system, have I called and booked it in? Have I bollocks! I'm far too scared and in the meantime life is utterly miserable with stomach pain.
Can someone come along and slap us both please?

quietlysuggests Thu 15-Nov-12 16:15:09

oh wimpering you do not sound self indulgent at all. You sound terrified. Because you think you have cancer and you really dont want to find out your brain has created this tremendous fear of the scopy.
You have options
A) try to fully tackle the fear, talk to your GP and ask for a couple of sessions with a psychologist etc to tackle the panic
B) ask a loved one to force you. Get them to book you in, to go with you, to sit and hold your hand, to talk for you, to request extra medication etc. Get them to be strong on your behalf.
C) tackle the fear yourself. Get a relaxation CD, something with breathing exercises, perhaps read Susan Jeffries Feel theFear book, and give yourself a reasonable deadline to make the appointments -say 3 weeks.

But above all - tell your GP that you have gone for the scope and tel them why. Make sure someone is watching out for you.

(By the way, with un treated oesophageal cancer, and a 2 year history, by now you would be very emaciated indeed. If you are not, it is much more likely that you have chronic reflux. Which is better of course. But untreated, this can cause the very thing you so fear. So please go check.)

kenanddreary Thu 15-Nov-12 16:20:32

I just want to add to the very good advice above that you can be sedated for these procedures and then you honestly won't be aware of what is happening. Sedation is extremely effective and will certainly relax you. I would highly recommend that you ask for this.

MrsB74 Thu 15-Nov-12 16:21:08

I have had an endoscopy, actually thinking about it I've had two! On both occassions they knocked me out as I was not keen (to put it mildly) on the idea of being awake for it. I think it was a sedative rather than general anaesthetic if I remember correctly, but regardless I was blissfully unaware of what was going on. Just go and get it over with, it'll be nowhere near as bad as you think. I promise. x

whimperinginacorner Thu 15-Nov-12 17:08:12

Oh thank you everyone for taking the trouble to post!! You are all really kind!!

Quietlysuggests thank you so much for the suggestions - all of which make huge sense. I think I might go for all three!!

I'm very very fortunate to already have (b) covered - dh - who can happily always be relied upon in these sorts of situations smile and I very much like the idea of a relaxation CD. Think I will research and buy one on-line tonight. And I will ask around about seeing someone with a view to getting through this very specific procedure. It would be good to have extra support because it's not the sort of things I want to bang on about to friends particularly. Thank you again.

And btw - that is the one bit of hope that I am clinging on to atm - the fact that I am far from emaciated and actually need to go on a diet but find it quite hard to lose weight!! I know about the risk of Barrett's oesophagus though due to family history. I know I need to take it seriously.

With regard to the fear - I think you are right that I am terrified about finding out the truth. But I am also very afraid -specifically - of choking/being in a situation where I am not in control/the tube down the throat thing. Although I admit to being a bit of a worry wart in general - I am not remotely afraid in other situations like (a) having a caesarean (b) having injections in to my eye (c) riding a horse at 25 miles an hour!! I've always been anxious about the dentist or the doctor using a tongue compressor and have v. sensitive gag reflex which causes me to panic out of all proportion to the situation (my head know this but my body still reacts ifyswim).

Thank you Lightpassenger I am definitely going to have sedation for the procedure - no hope of it otherwise!! Really take my hat off to people who go through it without. Will ask about valium before procedure when I go to the preparatory appt - although I don't think anything taken orally will work as you have to drink loads of thick white stuff that clears out your system beforehand ifyswim.

TheAccidentalExhibitionist so lovely to hear from someone in the same position but sorry that you are living with such discomfort! (I live abroad too.) It's obviously fate you came on here today. Go on. Make the appointment! You can do it! Purleeeasseee. Then we can whimper on here together!! grin

greatresult Thu 15-Nov-12 17:09:01

OK--I work in a clinical setting and know exactly what drugs they use to sedate you. You will be "floating" and will have no memory of the procedure at all. The hospital will see your level of fear every day. Thank goodness we live in modern times with access to these drugs. The thought of these things is ALWAYS worse than reality. Please be reassured by that.

whimperinginacorner Thu 15-Nov-12 17:12:02

xposts

Thank you MrsB74 I know you speak the truth - I know the dread is worse than the fear. I know it intellectually that is - I just need to get that message through to my whimpering, trembling, perspiring sympathetic nervous system!! grin Must get a grip!!

Kenanddreary yes, as mentioned above - am definitely opting for sedation. I think the consultant mentioned last time that it is the 'date rape' drug they use ...and he also explained that I wouldn't remember any of it. I wonder if you are aware at the time though ....??

jalopy Thu 15-Nov-12 17:14:22

Whimper, you sound very anxious and stressed. Try to make the appointment and ask for a big slug of sedation. The worry about the procedure is so much worse than the actual procedure, believe me.

As for the small white lump in your tonsil bed. Do you think that it just clogged up food (tonsilliths or tonsil stones)?

Even making the appointment will be one big hurdle. Carry on posting and we can hold your virtual hand on the lead up to the procedures.

trickynicky Thu 15-Nov-12 17:15:45

I can COMPLETELY understand your fear as I had exactly the same about 3 weeks ago before I had to have an endoscopy. I was ABSOLUTELY terrified! I have to tell you in all honesty, that it was really fine. I insisted on sedation and despite the fact that I was literally shaking whilst waiting to go in, I can honestly say I remember nothing at all about it. I woke up and walked out about an hour later with no memory of it and a slight sore throat. Waiting is usually done in a large ward with several people in it going for the same thing and everyone coped fine. Please do not put this off - I really promise you that you it is not as bad as it all sounds. No-one could be as petrified as I was and afterwards, I just realised that i'd built up the whole procedure in my mind - convincing myself I would choke, gag, panic - not a bit of it - honestly.
Hope this helps a bit!

whimperinginacorner Thu 15-Nov-12 17:16:07

Thank you greatresult not sure I like the idea of floating (don't like any 'out of control' sensation - never drink to excess because of that for example) but you are dead right about being grateful for these modern drugs/procedures. The consultant himself is very reassuring and experienced - it will be in his private clinic (live in a country where this is standard) so even more relaxing than a hospital. Unless something goes wrong that is ... but will make sure I discuss all these fears with him. Thanks for the reassurance! smile

whimperinginacorner Thu 15-Nov-12 17:22:35

Yes Trickynicky that helps A LOT!! Thank you!! And huge respect to you for facing the fear and going through with it. I will definitely be re-reading your post prior to the appointments!! Good to know eveyrone else coped too.

Jalopy you are very kind and hand-holding much appreciated!! (I've never heard of tonsil stones but I guess that is one thing they will investigate.)

Appts are made. Consultation prior to procedure is on Mon 26th and actual procedure Wed Dec 5th. [shivers]

Going to go and do hwk supervision/supper/bath/bed thing now (one hour ahead here) but thank you again everyone for all your support. I'm still scared (it tends to come in waves) but right now I feel a whole lot better for 'talking' to all of you about it.

Thanks again.

I've had one, without sedation. It wasn't my favourite thing to do, but it didn't hurt, it was just very uncomfortable. But I do think you should go for the sedation option since you're so frightened.

jalopy Thu 15-Nov-12 17:27:33

Well done, Whimper.

Try to keep yourself occupied with other nice thoughts over the next couple of weeks. If you feel a bit wobbly about it, post again!

Baffledandbewildered Thu 15-Nov-12 17:37:46

Whimper i know where you are coming from i have a servere phobia of needles and hospitals . I had to have an endoscope for the same reasons as you. Because of my needle phobia i had it done whilst awake!! Not the best idea but i survived.......main reason i think it was not advisable was i kept reaching and wetting my self smile but couldnt tell anyone as i had a tube in my throat haha. It was over quickly and not painful. Be brave and go , just think about me walking out that hospital, as i didnt tell anyone of my predicoment !

mintyneb Thu 15-Nov-12 17:39:28

Whimper, well done for making the appt.

I know exactly where you are coming from although for slightly different reasons. I'm due to have an endoscopy on the 3rd December - it will be my 6th.

I have always gone for sedation but it doesn't seem to work well on me. When I had my last one 2 years ago the consultant asked me afterwards if I remembered anything?! He wants me to have propofol sedation this time which is the heavy duty stuff, just one step down from a ga and has to be given by an anaesthetist.... I will be completely unaware of the procedure which leaves me wondering what on earth I did last time!! Did I punch him or turn into a screaming banshee?!

I really can't cope with the whole gagging thing either but due to complications with a previous endoscopy (a saga in itself) I'm extra worried.

Perhaps we should hold hands together next month!

ChestyNutsRoastingAnOpenFire Thu 15-Nov-12 18:08:36

I had an endoscopy with sedation....remember laying on my side and them putting sedation (midazolam) in and thinking "well it's not doing anything" and then came round in recovery!!

Midazolam is a sedative and amnesiac (makes you forget) its fabulous!

Felt a bit teary after but think it was relief, was fine after that.

You will be fine and you know you have to do it.

<<waggles eyebrows menacingly>>

Whimper, I completely understand how you are feeling about the procedure. I always used to say that any doctor could do anything to me except stick a camera down my throat, I just could not ever handle that. Imagine my horror 2 years ago when I had to have one done. I was stupidly scared and don't mind admitting now that I had about 2 hours sleep during the 3 days leading up to it! I was absolutely terrified but just knew I had to do it (I was feeling really ill at the time). I asked my consultant if they could do anything different, a CT scan, mri or anything but that, or if I could be put to sleep. No, I had to get it done!

On the morning of the procedure I went to the hospital, I was shaking with fear and couldn't even speak to my DP who was with me. He tells me now that I was ashen! I was taken into a room to talk to a nurse who offered me the choice of with or without sedation. Of course I went with it - make sure you do this!!

When I was called in I walked down to the room and got on a bed, the doctor walked in and looked at my heart rate and said 'oh my your heart is beating ten to the dozen'....I told him I was petrified and he told me he could tell that!! Anyway, they spray the back of your throat with something to numb it and then put an injection in your hand for the sedative. I lay on my side and the next thing I remember was burping (I think they had just pulled the camera back out) and being wheeled to a recovery room! I stayed there about 30 mins while they kept checking my BP and then they took me to another room and gave me a cup of tea and a biscuit! They then told me the results.

My throat was a bit sore, nothing major just sore for a day that was all. I honestly couldn't believe how easy it had been and how worked up I had got myself over it. I was actually crying in the car on the way to the hospital on the phone to my mum!!

Please go ahead and have it done, I promise you that you wont even know anything has been down your throat, you won't gag, you won't feel it, you will just have a little sleep for a few minutes and they wake you when its done. I would have another one if I had to and wouldn't be nervous about it at all.

whimperinginacorner Fri 16-Nov-12 09:39:23

Thank you again for yet more responses and apologies for only getting back on here now.

Richteaarecrap (love the nickname btw!) thank you so much for taking the time and trouble to type out your very reassuring post. That really does help hugely and I will definitely be referring to it when the time comes. I feel exactly the same way atm - happy to have anything done to me except that, and of course, sod's law etc, that is exactly what I have to have done!! Really good to know that you wouldn't mind going back to have another.

Chestynuts (another great name!) thanks for the much-needed eyebrow waggling grin!! I will try and shift my focus on the relief I know I will feel afterwards, rather than the procedure itself.

Mintyneb shock at 6 endoscopies!! Poor you! Slightly worried about anaesthetic not working - also that I have recently developed severe allergies to a few things - but will add those points to my list of questions to ask at the consultation beforehand. Definitely up for a bit of mutual hand-holding - thank you - will be back on here before the 3rd to wish you luck!

[Doffs hat to Baffledandbewildered] Crikey - that sounds like a bit of an ordeal - you are really brave to even contemplate having it done without sedation. [Adds worry about peeing oneself to list grin]

Jalopy have planned some lovely creative stuff to do over the next few weeks as it happens and will definitely be coming back on here to whinge vent and shiver share my concerns wink again - thank you!

Longtalljosie another brave person who has shunned sedation. Will definitely be asking for as many drugs as possible smile. Actually, where I live (mainland Europe) I don't think having it without sedation is an option thankfully ...

whimperinginacorner Fri 16-Nov-12 09:41:03

As you can tell, feeling much more chipper about all of this morning, thanks to you lovely lot smile - thanks again

RoxyRobin Fri 16-Nov-12 09:56:32

Oh dear Baffledand bewildered - I'm due to have my third endoscopy in two weeks' time. I've had sedation in the past but thought I might give it a go without on this occasion. Having second thoughts now - not because of the discomfort, but because I don't want to be wetting my knickers.

Perhaps I should go tooled up with Tena.

I'm sure you'll be fine, whimpering - I wasn't aware of anything during mine, and my sore throat wasn't bad enough to stop me giving DH an earful for taking so long to pick me up from the hospital!

lalabaloo Tue 20-Nov-12 10:01:17

You'll be fine, i have had an endoscopy too and was terrified, the night before I nearly refused to go, but it was fine. I didn't have sedation because I was too scared that I would feel awful after, but it was okay. It wasn't fun, but if I had one again I wouldn't have sedation. The thought of it was the worst part. I hope it all goes well for you and you get the all clear

Badvocsanta Tue 20-Nov-12 12:27:35

I had one.
I was petrified.
Had the sedation and i dont remember a thing...was signing up and eating custard creams 10 mins after.

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