"Gastro Endoscopy and Emetophobia"

I had a gastro endoscopy at Golden Jubilee hospital last week, and would like to share my experience. For context, I have Emetophobia.

My appointment was made only two weeks in advance. I assumed the procedure would be vaguely similar to a nasal endoscopy I’d had before. This was performed by one doctor in an office, the wire was thin and tolerable, and my throat was numbed. I did not receive the letter with information in the mail beforehand, so had no reason to think otherwise.

I was asked if I would like sedation in a phone call a few days beforehand. I said no as I would require someone to come with me. They also asked if I had received the letter, and I said no.

At the hospital, I was asked if I had received the booklet in the mail, which I had not. I was not offered a chance to read the booklet. The doctor arrived. They described the procedure, with the tube and numbing spray, emphasising it would be uncomfortable and not nice. They allowed me plenty of time to ask questions.

At this point I was nervous. I stressed to both the nurses and doctor I have a strong gag reflex, emetophobia, and was afraid of gagging/retching. The doctor said it might feel like I couldn’t breathe. A different doctor would be performing the procedure, and I was reassured they would be made aware. They checked again if I wanted sedation, but as I didn’t have anyone with me, I said no. They did not mention the strong possibility of gagging/retching. I still believed the tube would be thin and the spray would numb my entire throat. I signed consent.

There were more people than I had expected in the room (approximately 8), which was overwhelming. The other doctor introduced themselves and I once again shared my fears. I was given the numbing spray. The mouthguard was strapped on. The tube was not thin. I started to panic, but felt at this point it was too late to say anything.

I gagged around the tube straight away. I was horrified. Nobody had told me this might happen, I thought it would all be numbed. Maybe it was implied or assumed obvious. I thought something was going terribly wrong. I was told to try and breathe through it.

When the tube was in my stomach, the urge to gag did not going away, and I realised I would have to withstand it for an unknown time. I was terrified. I attempted to ask ‘how long?’ around the tube, but understandably was unintelligible and no-one responded.

I knew I could stop the procedure by lifting my arm. To be honest, my sole focus was on trying and failing not to retch. I remember desperately waiting for it to be over. When the tube was removed (with more retching) and it was finally done, I felt distraught. I do remember being asked if I was alright, and saying ‘no.’

I broke down in tears in the recovery room. The reality was far worse than described. Everything I had been afraid of had happened. I felt traumatised and violated. I was shocked that I had been allowed to go in unwarned and unsedated. A very kind nurse comforted me, and told me I had been brave.

The nonchalance with which the aftermath was treated was confusing. The doctor did not come to follow up. Given my reaction on the table, I thought it warranted one. The nurses were all lovely. I was given tissues, a hug, some tea, and the results of the endoscopy, then sent on my way.

A week later, I am still struggling to process. The emetophobia aspect left me traumatised and with intense regret. I am frequently reliving it. I have daily bouts of anxiety and crying, and have sought therapy. I’m mad at myself for not doing my own research on what to expect. In hindsight, it seems obvious I should have asked if I would retch. I thought I had advocated for myself and asked the right questions. I never expected the procedure to be pleasant. But I feel I went in unprepared, without the relevant information to give fully informed consent. From my perspective, it felt like not much was done to prevent the distress I experienced, and no accountability was taken afterwards.

After some googling I found the mailed booklet I was supposed to receive, which did in fact mention gagging. It sounds trivial, but reading that would have disabused me of some assumptions, and I could have planned accordingly. I also believe the sedation option was underplayed over the phone.

At the hospital, I feel my emetophobia was not taken seriously. I desperately wish I had changed my mind and chosen sedation at a later date. Looking back, it feels like the details were undersold in an effort to not scare me. I don’t believe any of this was intentional. I appreciate there is a fine line to walk between giving information and not scaring the patient, but retching seems relevant. I feel unheard.

I know this all sounds very dramatic, and I’m sorry. I went back and forth about whether to send this. I have been embarrassed about my reaction. People have endoscopies all the time, most without issues. To the endoscopy doctors it must seem an overreaction. However, I’ve realised I need to attempt some sort of closure, which has led me here.

I’d like to stress that despite my experience, the team at the hospital were very kind. I see lots of positive comments on this website, and they are well deserved. I’d like to thank them for getting me through the procedure safely. I believe there was some sort of conference on when I was there, where doctors were observing others do endoscopies. I hope sharing my experience can help others in the future.