Invasive medical procedures and autism - trigger warning

Yesterday I had 2 tests.

One is called an 'Oesphageal Manometry' and I found it horrific but managed to survive it and do what was asked.

Whilst the tube was down my throat I was trying not to gag all the time, my eyes were streaming and I was panicking.

Then I had the '24 hour Oesophagael pH test' which was far worse, even though it was meant to be easier, according to the medical professional doing it.

So the tube is put through your nose and down your throat, it's attached to a monitor and you are meant to keep it in for 24 hours to monitor stomach acid.

I knew immediately that I wouldn't be able to tolerate it - I was so aware of it in my throat that I was trying not to gag all the time and when I sat in the car I could feel it moving around.

I was acutely aware of the tube and it made me feel very panicky.

Once I got home I removed it - never again.

This may mean that I won't be able to have an operation to help with stomach acid/chronic cough, as the hospital won't have the results they need.

However, it was simply totally intolerable.

When I have had gastroscopies it's been similar but I know it's for a limited period - they do it as quickly as they can but I gag constantly and they write on my report 'excessive gagging'.

I'm curious as to whether this is because of autism.

I know that we have sensitivities - touch is a major one.

I don't know how others can bear to have this thing in their throat and down their gullet, so is this to do with touch sensitivity internally?

Here's a reminder that I've just read about our sensitivies, but it doesn't talk about invasive procedures:

https://www.autism.org.uk/advice-and-guidance/topics/sensory-differences/sensory-differences/all-audiences

Parents
  • I’m really sorry to hear you had to go through this.

    My dad went through a similar thing many years ago and wouldn’t tolerate it so eventually they agreed to sedate him. I don’t think I could ever agree to such a procedure without sedation, it sounds awful.

    I hope it works out for you and you are okay.

    edit: I think anyone would gag, not just autistics, but I am sure my dad was also autistic.

  • I don’t think I could ever agree to such a procedure without sedation, it sounds awful.

    I had sedation once for a gastroscopy but that's because it was private (on insurance) and it was so much better.

    I've asked for sedation on the NHS but it's never happened.

    I'm OK thanks - I have just returned the instrument of torture to the hospital.

    The worst thing for me was that I was meant to keep the thing in for 24 hours - when you know it's just for a few minutes it makes all the difference.

    I hope it works out for you and you are okay.

    Thank you for your kind words.

Reply
  • I don’t think I could ever agree to such a procedure without sedation, it sounds awful.

    I had sedation once for a gastroscopy but that's because it was private (on insurance) and it was so much better.

    I've asked for sedation on the NHS but it's never happened.

    I'm OK thanks - I have just returned the instrument of torture to the hospital.

    The worst thing for me was that I was meant to keep the thing in for 24 hours - when you know it's just for a few minutes it makes all the difference.

    I hope it works out for you and you are okay.

    Thank you for your kind words.

Children
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