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Column: 'The doctors wouldn’t listen, and why would they? I’m not a doctor'

The healthcare system has failed me. Nobody knows how to treat me, writes Elisha Reilly.

Elisha Reilly Nurse living with chronic pain

I’LL START FROM the 25th March 2013. For a year and a half before this date I had ended up in my GP’s office, the after hour doctors and A&E over half a dozen times in excruciating pain.

Every time I was fobbed off with painkillers and told that because I have IBS it was reflux, constipation gastritis etc. I knew better because I had been living with IBS my entire life and I had no doubt in my mind that this debilitating pain was in no way connected.

But the doctors wouldn’t listen, and why would they, I’m not a doctor. So with a strong dose of Morphine and a prescription for Nexium, I was sent on my way.

Hospital tests

On Thursday morning, the 19th of March, I end up in A&E in agony once again. I’m met by a doctor, told I’m having reflux, given tablets and sent home. By Sunday morning I can’t take the pain anymore so decide to see the out of hours doctor.

She knows it is not reflux, in fact she thinks it’s something completely different, so she sends me to the gynaecology department in the hospital. They do some tests, find nothing, tell me it’s constipation but still send me back to A&E.

I’m seen by the same doctor I saw on Thursday. Now to be fair, he is one of the nicer doctors I’ve met. He now realises the fact that I’m back again so quickly has to mean something more sinister is afoot. So he does some more checks, has yet more blood taken, rechecks the many x-rays I’ve had and decides to get the surgical team involved as he is now considering appendicitis.

Which leads me to the 25th. The surgical team admits me Sunday night, tells me they don’t think it is my appendix at all and don’t expect to find anything wrong but because I’m in so much pain, they’ll go in laparoscopically to have a look. The surgery is done Sunday night.

I wake up hours later, in the early hours of Monday morning. I am told that I had the worst case of appendicitis he had ever seen and he couldn’t believe that the night before I was sitting up in bed chatting to my boyfriend, when I should have been barely conscious.

Could have been avoided if my pain was taken seriously

It turns out my appendix had become gangrenous and had swollen so much it had attached to my ovary. The surgeon had tried to remove it laparoscopically but it would only come out in bits and pieces, and so, he had to convert to open surgery.

He then had to scrape out what was left of my appendix, wash out my abdominal cavity, insert a drain and ensure I was prescribed a multitude of painkillers and two antibiotics because of my high risk of infection. I was kept in hospital for a week. All of this and what has happened since, could have been avoided if my pain had been taken seriously.

After being discharged, I ended up back in A&E, four times in the following weeks, due to uncontrolled pain and violent vomiting, which the antibiotics were causing. After that, I very slowly, started to get my life back on track. Oh something I neglected to mention: I was smack bang in the middle of a four-year nursing degree course while all this was happening. And with assignments due and exams coming up, this wasn’t an ideal situation. But I got through it and carried on.

I was a mature student

Carrying on wasn’t easy though. I was a mature student, working weekends, barely making enough money to pay the rent. I was struggling with mental illness that had also resulted in a hospital stay and I didn’t have family to rely or fall back on (which is a different story for another time). Eventually though the pain started to come back. I couldn’t believe it. That part of my life was over. It had been dealt with. But I was wrong.

It started off with the odd pain every now and then. Nothing to get too concerned about. But then it started getting worse and more frequent and was starting to get in the way of work and college. The hospital visits started again.

I work for eight weeks, two of which I have off for Christmas and New Years, and on the 28th of January 2016 I am deemed unfit for work. The pain is just too bad. So what now? I’m already on a list to see a pain specialist but that’s public sector so who knows how long I’ll have to wait.

I keep going to my doctor. I keep taking the painkillers. I keep resting and I’m slowly going mad from cabin fever, when work steps in. They’ll organise a consultation with their pain specialist. I will have to pay for treatment but it can be done over time and will start when I can afford it.

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I’ve never known anything so difficult. I have been in pain for years. Life was difficult enough when I only had my own thoughts to fight with, but when you add pain, constant pain to that, you start to ask what’s the point? Is life really worth living when this is how you have to live it? I am writing this now on the 21st of May, now out of work again for exactly two months because again the pain is too much.

The healthcare system has failed me

They had to send me to A&E, from work, in excruciating pain again, where I spent more time in hospital, had more tests, only to be told that it is likely the adhesions have come back and this time there’s nothing they can do about it. Surgery causes adhesions, surgery to remove adhesions results in more adhesions. All that’s left is pain management and right now I am still on the public waiting list to see a specialist. It’s a year and a half later.

So what do I do? The healthcare system has failed me. I am sitting here, in pain, barely able to look after myself, two months before my 31st birthday. I’m not able to work and am contemplating giving up a job I spent four years working for because nobody can give me answers. Nobody knows how to treat me.

It’s been left up to me to figure out how to get my life back or just accept it the way it is. I have been failed by the system I am trying so hard to get back to.

Elisha Reilly is 30 years old. She graduated as a general nurse two years ago and had been working as a theatre scrub nurse.

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About the author:

Elisha Reilly  / Nurse living with chronic pain

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