Over the past few months I have experienced the agonizing, sometimes breathtaking pain of endometriosis. The only way endometriosis can be diagnosed is by surgery – if you’re lucky it can be treated at the same time – so it wasn’t until I had a laparoscopy yesterday that I knew for sure that it was, in fact, endometriosis. It comes as a huge relief to have a diagnosis, but what has really amazed me is the number of women around me who have heard my story and told their own tales of secret endometrial woe.
Endometriosis is when the endometrium – the layer of tissue that grows inside the uterus each month, and sheds during the menstrual cycle – appears in places other than the uterus. It can grow and attach anywhere in the abdomen, and the level of pain and other symptoms that result seem to depend more on the location than the amount of endometriosis. (Find more info about the condition here.)
A friend of mine who moved to Melbourne years ago from Perth says that the one thing that’s always true about Melbourne weather is that “it’s not normally like this” – regardless of what “this” actually is. The same seems to be true of endometriosis. No two stories are alike, and the level of pain can be anything from zero to exquisitely unbearable. Where there is pain, it can be anything from 3 days of trauma per cycle to month-long agony. It can even cause digestive symptoms, and masquerade as irritable bowel syndrome. Endometriosis is such a variable beast that it can be a nightmare just trying to find a diagnosis.
Like period pain, endometriosis tends to be seen as a shameful secret. Anything to do with a woman’s reproductive organs must never be spoken aloud, particularly not in public, and certainly never in front of a man. Why is that, exactly? What shameful truth will my male colleagues learn if they find out that I have endometriosis? I’m pretty sure they already suspect that I’m female. They are probably bright enough to work out that I have female reproductive organs (especially since I have kids who are obviously genetically mine). Why should I be secretive about my reproductive systems going haywire, as opposed to say, a dodgy ankle, asthma, or some other, publicly acceptable health complaint?
There is no question that endometriosis has had a profound impact on my family, as much as on me. I have been exhausted and cranky, from constant pain. It has impacted on my work and my colleagues. It seems only sensible to be open about what is going on – yet there is this shocked reaction when I talk about it. I know that I am rather more open than your average bear, but I don’t understand what is shocking about being open about your health. Far worse, I’d have thought, to hide it and try to pretend all is well when you’re in pain and performing under par as a result.
Women often complain that men are not understanding enough, yet how are they supposed to understand something that we refuse to even admit to, much less explain? Regular readers will know that I am impatient with gender segregation, particularly as I often feel myself to be on the wrong side of the gender divide. I prefer engineering to make up, and network connections to royal hookups.
Men are affected by endometriosis, when it affects the women in their lives. By not discussing it and failing to let them know what it is really like, we sabotage our relationships (by which I mean working relationships and friendships just as much as partner relationships), and deprive them of the opportunity to understand and empathise. Men who don’t have female partners still have mothers, sisters, daughters, aunts, female colleagues, and friends – in other words, women in their lives.
I am open about my endometriosis. It may make the men in my life squirm, but I suspect they’re used to me doing that. I think it means that those men are more in my life than they would otherwise be. Better able to understand what it’s like to be in my skin. I think that’s worth a little squirming. I’m not about to shout it from the rooftops with a megaphone. But when people ask me how I am, I tend to tell them. I wonder what the world would be like if we all did that?