Wednesday, 23 May 2012

Well, That's Unexpected
About a week ago I started having tests because of a horrible pain I was getting across my lower back, especially on urinating.

I was expecting the best possible result to be a urinary tract infection, and the worst to be lupus nephritis (kidney involvement in lupus).

What I wasn't expecting was that the problem would be a completely different organ all together. I have a bleeding ovarian cyst.  What happens here? I redo the ultrasound in a few weeks.  Hopefully the cyst will resolve itself.  If not, and if it gets really bad, there's an option for surgery.

I've had the surgery before, and am very glad that hospital procedures and methods of surgery have changed a lot in 24 years.

So what has changed? Let's go back to 1988, and I'll tell you a little story. Don't like medical horror stories? Don't read the rest of this post. (Spoiler alert: it does have a happy ending. The heroine survives - and age has made her a lot tougher and more assertive.)

It was June or July 1988.  I was a journalist in Mount Isa, North West Queensland. I had purchased my three-day pass to World Expo 88, and my Greyhound bus ticket to Rockhampton. I'd been going to meet up with some other people in Rocky and we'd all catch a train to Brisbane. I had two more days of work and then I was going. I had just that day given the spare key to my flat to a man I'd dated a couple of times (let's call him "M", he features in the story a bit) so he could feed my cat while I was away. He liked cats and the cat seemed to like him - and she didn't like many people.

All good. I woke up in the morning feeling sick. Feeling guilty, I phoned into work sick, sure that everyone would think I was taking off on my holiday early.  By lunchtime, I was vomiting uncontrollably.  I went to my local GP, who told me I had a touch of food poisoning and go home and drink flat lemonade.

I did as I was told and went home and went back to bed.

In the middle of the night I woke up feeling as if my abdomen had exploded. The pain was the worst I'd ever experienced, and worse than anything I could have imagined.

I barely crawled to the phone. I was going to ring the ambulance, but thought how far away the door was to let them in.  Instead, I called M.

He came around, called the ambulance, and followed the ambulance to the hospital. It was about 3am, and I was so sick I barely knew what was happening. People poked and prodded me.  Somewhere in the midst of it, someone asked if the man who came in with me was my boyfriend. I said "sort of".
By daylight I was in a ward, with a drip in my arm, under observation.  To fill my bladder for an ultrasound, I was given an injection of diuretic, and had two bags of cold saline solution squeezed through my cannula. The pain was excruciating!  The last thing I needed with the pain I already had was a full bladder, and I had to hold it then until the ultrasound person was free.

There were blood tests, and urine tests. No-one told me if they found anything.  About 6pm, I was told I was going for a laparotomy.  No-one told me what a laparotomy actually was.

The last thing I saw as I lost consciousness was the GP who had sent me home with "food poisoning" - he was also an anaesthetist at the hospital - leaning over me saying: "fancy seeing you here." (Later that year, I would discover when covering a court case that this GP was also a pathologist and the Government Medical Officer in Mount Isa at the time. He was everywhere doing everything.)

What I remember from the next 12 hours or so was someone telling me I was in recovery, then being back in my room having nurses clean me up. They were very impressed with the bag M had packed for me for hospital. (He had found the over-night bag I kept packed in case I had to go out of town to cover news stories.) One nurse was saying she'd never seen so much blood.

The next morning M visited, with a heap of "women's" magazines. No news magazines. Nothing I was at all interested in. He told me I'd been bleeding into my stomach.  He knew because he'd given permission for the surgery, and they'd explained it to my mother (in Rockhampton) on the phone as well and she'd told him. I knew my dressing was far too low on my abdomen to be anywhere near my stomach.  But this was all I found out for most of a the week.

It was just before I was discharged that I actually saw the doctor who'd done the surgery and asked what he'd done.  He was surprised, surely my family had told me. He'd done a laparotomy, cut my lower abdomen open, pretty much right across, to see what was there. He'd found an ovarian cyst that was bleeding and stitched it over. Don't worry, he'd saved the ovary. He'd already explained to both my boyfriend and mother. (I was 22, and apparently didn't deserve to be consulted personally about my body.)

I didn't have to go back to the hospital except six weeks later to have the staples in my tummy removed.

I never did get to World Expo 88. My friends went without me, and I sold my ticket to someone else.

The medical world has changed since then.

I've had my appendix out by keyhole surgery, which left no scar, and healed very quickly.

A year or two before I was diagnosed with lupus, I had another gynaecological problem - constant bleeding and pain led to me having a hysterectomy. No cause for the bleeding or pain was found, but if the doctors had then known I had lupus, I suspect that would have been the explanation. That surgery was done by a very nice doctor who explained the whole process with me beforehand, removed the uterus vaginally so as not to leave a scar, and followed up afterwards to check that I was well and there were no complications.

If I have to have surgery for my ovarian cyst this time, it won't be anything like my 24 year old horror story. Nowadays, doctors discuss issues of my body directly with me. If I'm not conscious or capable of taking part in decisions for some other reason, they'll talk with someone I specifically nominate, not someone who just has my spare key so they can feed my cat. And they can do an operation like this one laproscopically, so I won't have another huge scar across my abdomen.


  1. I can relate to your problems, I have had uncontrolled, unexplained bleeding, which went on for a number of years before it got to the point of having an emergency hysterectomy.

    1. Sounds like it's another one of those extra things lupies get to experience. "Nice" to know I'm not the only one.


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