So this is my story so far. I’ll start from the date 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 the A&E over half a dozen times in excruciating pain. Every time I had been fobbed off with painkillers being 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.
On Thursday morning, the 19th of March, I end up in the 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 the 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, by the consultant surgeon. It is here 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.
It turns out my appendix had become gangrenous and had swollen so much they 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, I think four times in the following weeks, due to uncontrolled pain and violent vomiting, which the antibiotics were the cause of. 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.
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. Almost exactly two years later I was back in the A&E. The 7th of March, the 2nd of April, 30th of April, 19th of June, 22nd and 29th of July, 28th of August. Every date a trip to the hospital, every date one test after another. And what did they find? Nothing, yet again. So it was assumed that the surgery I’d had two years previously had resulted in adhesions. Fairly common. So it was decided to go in laparoscopically to remove them. Different team, different hospital, more faith as these were people I had worked with.
But this time, I never recover from the pain. From the minute I wake up in the recovery room on the 23rd of October, when it takes every painkiller the anaesthetist can give me just to get me down to the day ward, I am in pain. The surgery itself went fine. No surprises that they found my abdomen riddled with adhesions but they found a cyst on my ovary while they were in there. The pain was manageable enough to go home. At least that’s what I told them to get out of there. No way I was staying in again. But that was a mistake because yet again, on the 3rd of November, where do I end up? A&E of course.
This time they assume it’s because of the cyst but scans show that that has looked after itself. So post surgical pain it is, and painkillers will keep me off their doorstep. And a planned two weeks off from my new job in a new town to recover from my surgery has turned in to six weeks. And the 39 hours I had been contracted for has been reduced to 10-15. So back to work I go on the 1st week of December thinking it will only be a matter of time before I get back to normal. I just have to ease myself in. Wrong 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, 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. Anything to get me back to work.
So that’s what I do. On the 3rd of March I’m given the injection. A block for the pain. I have to give it time to see if it works and while it doesn’t get rid of the pain, again it’s manageable so I get in touch with Occupational health and I’m back to work, still part-time on light lists on the 21st of March. To start with things are going well. I have good days and bad. I have to learn not to overwork myself. I have to learn my bodies limitations. And I am not happy with how limited I am but at least I’m back to work. Work and life continues. Some days I work a five hour day and have to take to the bed when I get home, other days are not so bad. As time moves on I push myself to do more bit by bit and by August 22nd it is decided to trial me on longer days, more hours and heavier lists. Keeping in mind the pain is always still there, throbbing in the background to some extent. Turns out that trial didn’t last too long because on the 20th of October I was back for another block. A stronger, more potent one, that will work better and will last longer. Only it makes the pain worse. I’m in bits. I can’t go back to work again so I go to my GP. I get put on medication. It helps. The pain reduces. Not goes away, never goes away but enough to keep working. That’s all I want to do.
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 question more; 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.
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 as of right now I am still on the public waiting list to see a specialist. 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, not able to work, 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.