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
  • Debbie, I'm sorry to read you had to suffer that particular procedure, I don't think I could have tolerated it. 

    Maybe our autism could make us more apprehensive than others; however, I'm sure all patients would struggle with that one.

    I hope things improve for you,

    Ben

Reply
  • Debbie, I'm sorry to read you had to suffer that particular procedure, I don't think I could have tolerated it. 

    Maybe our autism could make us more apprehensive than others; however, I'm sure all patients would struggle with that one.

    I hope things improve for you,

    Ben

Children