You have to fight for your right (to be diagnosed) : part two

Way back when I was 22, I started getting these weird stomach pains. It would feel like my stomach was tight like a balloon, but there would be no bloating. The only thing that helped was to put pressure on it, and wait it out. It hardly ever happened, maybe 3 times a year, and a few years later the pains just stopped. I put it down to eating badly, as the pains had disappeared as my diet became better.

When I was 28, I started noticing little stabbing pains in my stomach. Once again, I thought it must be diet related, so I tried to eat better, do more exercise, and waited for them to go away. Only they didn't go away.

Shortly after my 29th birthday, the pains started to get much worse. As if someone was coming up to me and stabbing me in the side at regular intervals. I was also suffering from terrible nausea. I went back and forth to the doctor, trying various tablets, and then went to see a stomach specialist. He diagnosed me with constipation and sent me on my way.

By the end of the year, I was in agony. I was in and out of the A&E department and had a stay in hospital around Christmas time. I'd had all kinds of scans, seen two specialists, a surgeon, and had tried various drugs with hideous side-effects.

Through all of this, I had doctors telling me that it might be psychological. After all, there was nothing they could find.

I completely disagreed with that. Yes, I'd had some stressful times at work, but they did not correlate with the times when my pain was at its worst. I was not going to accept that as a diagnosis.

The specialist I was working with, who had tried a few minor surgical procedures on me, was at a complete loss. There was nothing more he could offer. In a last ditch attempt, he sent me on to a colleague, a gynecologist.

They decided it was time to cut me open and have a look inside. It was the only thing left to do. Ultimately, it turned out to be the exact right thing. During that investigative surgery, they found endometriosis, and were able to remove it then and there.

I have to confess I was doubtful that this would cure me. I had so much pain for weeks after the surgery that it seemed like nothing had changed. But then came a day when I woke up pain free. And I was pain free all day. And then I woke up pain free the next day.

I still have a few niggling pains, just to remind me that my insides are determined to be troublesome, but the life I get to live now is dramatically different from how it would have been if I had not gotten that surgery. Day to day, I could never tell how bad I was going to be. I couldn't make plans, sometimes I could barely make it off the sofa. And what I have learned from my doctors is just how many people live with chronic stomach and abdominal pains.

Whatever illness or condition you might be suffering, if you don't agree with your doctor, if you haven't reached a diagnosis that makes sense, you have to keep going. I'm lucky, I got an easy fix this time, and I know that's not true for everyone, but I was nearly written off as incurable.

Keep going until you get your answer.

You have to fight for your right (to be diagnosed) : part one

Twice I have been in a situation where I have had to convince doctors that I have real physical pain, and that it's not just psychological. I'm not denying that your mental health can affect your physical health, but sometimes there really is just a physical problem that needs correcting.

When I was about 26, I started to get really awful pain in the back of both hips, along the area round about where your kidneys are. I had experienced this sort of pain before, generally in the winter, and it seemed that it was getting worse year on year. I had mostly ignored it. Applied hot water bottles to the area when necessary, took solpadeine, and tried not to exacerbate things.

In the end though, it got so bad that I had to go to the doctor, and they agreed that I should get some x-rays done. Before the x-rays, I met with a hospital doctor, who was dismissive when I tried to explain where the pain was. They basically said that there was no way I could have pain in those areas. But I had my referral and the x-rays went ahead.

Well. It was extremely satisfying to see the proof right there in red. The giant areas of inflammation, exactly where I said the pain was, that showed how my muscles were strained from my hip dyslpasia. It was also a bit shocking, as I had not realised that my condition was so bad.

After I got the proof I needed, I was handed over to a physiotherapist. She taught me specific exercises to do every day to strengthen certain muscles, and she also did some acupuncture to stimulate the muscles and ease the pain. Acupuncture is said to be painless. Well it's as painless as having giant needles stuck in your muscles can be. I also started to swim consistently, every week, something I still do now.

Getting someone to work with me on what I could do to ease my condition made such a big difference. It allowed me to manage my pain, and also allowed me to pursue new sporting activities that I previously would have avoided. I learnt to rollerskate, (I can also skate backwards!), and I took part in two 5k obstacle races. 

I would never say don't listen to a doctor. Mostly they know their stuff. But you know your own body, so don't just take what they say as doctrine either. Don't give up until you get the result that you need.