When your period is your enemy

DEBILITATING: Endometriosis affects an estimated 176 million women worldwide.
DEBILITATING: Endometriosis affects an estimated 176 million women worldwide.

I'm training to go trekking in the Himalayas. On Friday I power walked 12 kilometres to work. On Saturday I did power yoga before a long shift. On Sunday I pulled on tracky daks and did a whole heap of very little.

That morning I became reacquainted with my pain. One moment it was forgotten, the next so horribly familiar.

For almost 20 years I fussed over it and pandered to it and planned my life around it. It came every few weeks and lasted two days or 12. I never left home without a pouch packed with painkillers, sedatives and my nuclear option: an opioid that dissolved under the tongue, more commonly given to end-stage cancer patients. They never did much. Usually they let me gather in the edges of it, so I could feel where it ended and I began.

But even when drugs did dull and shrink the stabbing and squeezing (dulling and shrinking me too) I was still consumed by it  - as if all my strength was spent just coexisting with it.

And I'm one of the lucky ones. Lucky because so many women live with debilitating period pain for years before anyone works out what is wrong.

I was diagnosed at 18 as having endometriosis, a condition that affects an estimated 176 million women worldwide. A specialist dropped to it when I gasped as he was examining my pelvis. A laparoscopic look-around confirmed it.

Patches of endometrium - the tissue that lines the uterus and bleeds each month - were growing outside the womb. The blood they produce has nowhere to go. So these bloody little patches were partying in my pelvis, breeding inflammation, cysts, adhesions and scarring.

What should I do?, I asked the gynaecologist.

Get pregnant as soon as you can, he said. Pregnancy might alleviate my symptoms, and fertility was likely to be problematic.

Then he put me on the pill, which suppresses the cycle by fooling the body into thinking it is up the duff.

I gained weight, and lots of it. I was put on another pill, then another and yet another. I hated the nausea and the hunger, and stopped taking them.

Ten years later I was living in London, where none of the overburdened GPs in my area would accept me as a patient. My pain was getting worse. Sometimes it would strike at work and I'd end up lying on the floor, too hard-hit to get a cab home. A handful of times I was taken to hospital. (Bet you can't wait for menopause, doctors would say.)

It was about this time my sister started enduring a series of life-threatening gut obstructions. She'd be on morphine in hospital yet go without sleep for days because she was doubled over in agony.

It was five years and as many surgeries before doctors realised she'd been born with her intestines in a tangle.

And she sure had guts. So when my now-routine pain came along I felt like a fraud, a drama queen. It's only period pain, I told myself.

It wasn't until I moved back to Sydney that I discovered I didn't have to live like this. A GP said surgery to blast the build-ups could buy me several pain-free years. The surgeon she sent me to also inserted a five-year intrauterine device to minimise my bleeding.

And just like that, the clouds parted. Freed from fatigue I fell in love with exercise again, and shed a stack of weight.

The surgery was five years ago. Almost to the month. So when my pain came back - and with the Nepal trek looming -  I was in like a shot to see my gynaecologist.

Have your periods returned?, was her first question. They never went away, I said. They were light and infrequent, but I never minded that.

But inside my head, I could hear the Hallelujah chorus. That had been breakthrough bleeding, I realised. I'd had no pain because the IUD had stopped my periods.

I left her office with a date for surgery to replace it.

I've done a lot of research about endo since then. Marilyn Monroe had it; now I know why she was addicted to painkillers.

It turns out debilitating pelvic pain is pretty much its defining characteristic. If you have endometriosis, then you almost certainly have experienced pain that seriously affects your life.

Yet across the world there's an average delay of seven years between onset and diagnosis. There is no known cure, but surgery and/or hormonal therapy can work wonders (and pills have come a long way since I was 18).

At last - 25 years after my diagnosis - I understand what endometriosis means for me. My period is my enemy. I never want another one. I just can't take them any more.

I'm elated by the knowledge. I can't believe it's taken me so long. Now all I have to do is accept that any forlorn hope of late-life fertility must die here.

Eighteen months ago I met a lovely man whom I love to bits. We were only talking about talking about trying. But that conversation ends now.

I'm writing this in the hope it encourages even one woman enduring endometriosis to ensure she gets the treatment right for her. Her dreams of being a mother may well have a happier ending.

As for me, I know I'm happy. I just have to be sad for a while now.

- Daily Life