Before I start this post I must make mention of the terror attack in Manchester last night. I literally welled up when I turned the telly on this morning at the thought of the grieving families who have lost their precious children, and the survivors who will have to live with horrendous blast injuries for the rest of their lives not to mention the psychological trauma. I have no idea what the terrorists hope to achieve. It’s not like the entire United Kingdom is suddenly going to go “OK, we’ll all become radical Muslims” now is it? And let’s not forget that Manchester is a multi-cultural city with a large Muslim population and the concert was filled with brown children as well as white. There is no faith which supports taking a life and even if there were it wouldn’t advocate taking the lives of others with the same faith. The world’s literally gone mad.
So, yesterday was
torture endoscopy day. I wasn’t allowed anything to eat past 8am and eventually went 11 hours without food. I was only allowed water until 12 noon, so went without a drink for 5 hours. This is not good for someone who drinks like a fish just to stay upright and eats every 3 hours or she feels like she’s going to pass out, and driving 60 miles in that state probably wasn’t all that safe!
I went on my own to the Hospital as these days I have no-one to go with me. It’s fine and I’m used to it. My Dad did offer, but it’s more stressful trying to keep my eye on his wanderings and keep him entertained than it is to go alone, plus I don’t trust his driving despite the fact he recently re-passed his test.
Three days before, I’d had a phone call from a nurse who went over all my health questions with me on the phone. Despite this, on arrival at the endoscopy suite I was taken into a room and asked all the same questions – why, exactly, and what a bloody waste of NHS money. Having arrived at the hospital I had been told by the nurse on the phone to report to Reception, but they didn’t even take my name and just told me to go and sit in the Endoscopy centre – the system is a shambles. I then sat in the waiting room for the next 1½ hours for reasons I couldn’t work out.
I was told I was having the procedure done by Debbie, the endoscopy nurse, but was eventually called in by a youngish man, who told me he was the endoscopy doctor – why they’d swapped me I have no clue. He was vile. Truly. He took me to the tiniest room on the planet, then said
“so, you have Ehlers-Danlos! Can you do party tricks?”
I was taken aback and stuttered “erm, well I used to be able to but am too old now”.
“You’re not old!” he exclaims.
Me, starting to get irritated “as you age you stiffen up, and anyway doing party tricks damages your joints so isn’t recommended.”
Him: “Have you had children?”
What the fuck has that go to do with anything? “No.”
Him: “Oh, cos I was wondering if they just popped out like shelling peas” he grinned.
Fuck off you dumb ass. You’re making light of a disease which causes me untold daily pain and has wrecked my life.
Him: “Can I ask you a question? What’s your life been like?”
I’m totally flummoxed by this and reply “in what way?”
Him: “Well, how has it affected you?”
I know from his attitude he doesn’t give a fuck how my life has been affected and I have no idea why he’s asking. I just want to have my endoscopy because I’m terrified I’m going to have anaphylaxis and die. So I reply “I developed M.E. after having meningitis, was bedridden for a decade and nearly died, so although having EDS is shit at least I can function which in my world is brilliant.”
Him: “What do you mean M.E.?”
Me: “I also have M.E.”
Him: “What does M.E. stand for?”
Me: “Myalgic encephalomyelitis”
Him: “Just checking you knew.”
Me in my head: “fuck off you weird twat. As if I wouldn’t know the name of the disease which nearly killed me and has decimated my life for over 2 decades.
Him: “You also have mast cell activation disorder.”
Me: “I do.”
Him: “Is that confirmed or just probable?”
Me: “It’s mostly only ever ‘probable’ in the UK because we don’t have access to the tests we have in the States to confirm diagnosis.”
Him, laughing: “we have in the States?”
Me: getting pissed now. “We don’t have access to the tests they have in the States.” I’m anxious, exhausted, ill, dehydrated and haven’t eaten for hours.
Him: “Rights, let’s go.” Then, as we’re heading up the corridor to have the procedure “you do know this can cause perforation and infection don’t you?”
Me: “Thanks for that, it’s not like I wasn’t already nervous”
Him: “Well I have to tell you these things”
Me: “Not 30 seconds before you do it you don’t.”
In contrast, the two nurses were absolutely lovely. Before we got started, though, I asked the doctor if he could do some biopsies to be tested for mast cells as I think they might be causing my issues. To cut a long, shitty conversation short, in which I’m made to feel like a hypocrondriac who has made her disease up, he says no. In fact, the entire procedure took less than 3 minutes – he went in, had a look around, and came out again. No biopsies of any description, not even of my pre-existing 11 polyps which haven’t been checked for cancer for 5 years. What a waste of time.
For anyone who hasn’t had an endoscopy before I have to say this: it’s one of the worst things I’ve ever had done, and I’ve had a shit load of stuff done over the years. I’m allergic to sedation, so can’t have it. Instead they spray your throat with local anaesthetic, which makes it burn and then makes your entire oesophagus numb and feel swollen like when you have lidocaine at the dentist. Swallowing is really weird and you feel like your throat is paralysed. They lay you down on your left side and put a bite guard-type thing in your mouth with a hole in for the endoscope, which is a flexible plastic pipe with a light on the end. It feels about a foot wide but is probably only about half a centimetre. The lovely nurse rubbed my back and held my hand as the camera was inserted, but trust me when I say they have to be brutal to get it past your voice box area and you gag like your life depends on it, literally feeling like you’re choking, and your instinct is to try and pull it back out and to stop you doing that is the real reason why the nurse holds your hand 😉 It does feel like you can’t breathe with the tube in your oesophagus but of course you can – you really have to focus though, battling against panic, and breathe deeply in and out through your nose. There’s another brutal shove, with gagging, choking and coughing as they get it through your diaphragm and into your stomach where you can feel it moving around. It’s not painful but very very weird and uncomfortable. Another brutal push and more gagging as it goes into your duodenum, where again you can feel it moving around. And the whole time you feel like you can’t breathe and are choking to death. Lovely.
My first endoscopy took about 20 minutes as they took pictures and loads of biopsy samples, but as I said earlier this time he was in and out within minutes. Lots more gagging, coughing and choking as the scope comes out and it’s all over. Thank God.
Apparently all is fine. I have a tiny hiatus hernia not even worth mentioning and no inflammation. How I can’t have inflammation is beyond me, being as though I have acid burning my oesophagus every day of my life and have had for several years now, but according to Speedy Gonzales everything was “plum normal”. I fucking hated him.
Knowing my throat swelled last time I was fully expecting to be kept an eye on for at least half an hour, maybe longer, afterwards but no such luck. I got up off the bed and was out the endoscopy suite literally 30 seconds after he took the scope out. I did ask “what happens if my throat swells like last time?” as I was being escorted out the door and he just said “see a doctor”. Thanks for that when my local cottage hospital doesn’t even have doctors on staff out of hours.
Luckily there was no significant swelling this time – it was such a relief. I did spend the night feeling like I had the worst case of tonsillitis ever, swallowing past razor blades, and my throat is still really sore this morning but I managed to eat some soft food (mashed potato and carrots with salmon) for tea.
The Doctor did say that being as though all appeared ‘normal’ he wants me to go back for an ultrasound on my gallbladder so I’m now waiting for an appointment about that. I then have to see the Gastroenterologist, who usually sees patients before all this stuff is done but wanted me to have the tests first so he had the results, which I can understand but if I’d seen him first he could have ordered the mast cell biopsies *sigh*.
I’m fairly sure I know what my pain is all about, but as usual Doctors don’t listen to me and aren’t willing to do the necessary investigations. If it’s not something typical, like a hernia or an ulcer, they’re flummoxed and not interested in investigating further. If the Gastroenterologist fobs me off I’m going to ask if it’s possible to be referred to an EDS specialist, ie Qasim Aziz down in London – I’ll probably be told no but it’s worth a try.
I’m tired, bruised and disillusioned this morning but at least it’s over with and I survived unscathed 🙂 My advice for anyone else having an endoscopy would be this: if you can, have the sedation. You apparently can still feel the procedure but it’s not half as traumatic as having it done fully conscious!