Secret women’s business

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?

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7 thoughts on “Secret women’s business

  1. Joe

    I vote (and vote often) for open dialog about the full range of personal experience and circumstance.

    I have personal experience of two other “shameful medical conditions” which spring to mind. One is miscarriages, in this case of course my wife’s not my own, which nobody talks about until you tell them you had one. Then you discover where those one-in-nine visible pregnancies that ended in miscarriage were hiding. (The reality is that it’s likely that the vast majority of conceptions “miscarry”, but it’s within the first few weeks and people just don’t realise they were “pregnant”.) And the conversations often contain a strange undercurrent of self blame, even though the reality is there’s very little anyone can (or should) try to do about it… most miscarriages are simply rejections of non-viable fetuses.

    In this case I suspect it’s that whole assumption that life-should-be-fair and biology is clockwork when we roll those fertility dice. But one visible pregnancy in 9 for a perfectly healthy couple in their 20s will miscarry… which means one couple in 80 will have their first two pregnancies miscarry when nothing is wrong. (And the rates go up if you are unfit, older, smoke, drink … the real rates for the whole population are much higher.) Similarly with a “pregnancy rate” of one in four menstrual cycles (healthy couple in their 20s) one couple in 11 will take over a year to see a pregnancy … when nothing is wrong. Annnnd… in steps modern medicine to “save them”, even when there’s no diagnosis of an actual problem. (Shakes head.) Anyway… when one’s own experience is a series of failing to roll “six” on the pregnancy / carry to term dice I guess it’s easy to look around and see all those who “had no trouble” and wonder “what’s wrong with us?”

    (We have two kids with one visible miscarriage between… in our case requiring surgery.)

    The other “shameful condition” is an odd one. Hearing aids. I’m sure most of us know aging relatives who refuse to get their hearing tested because they don’t want to find out they’d benefit from hearing aids. Because, you know, that would improve communication imply they were getting old.

    My personal experience of hearing aids is at the other end of life’s journey, with our profoundly deaf daughter. When she was a toddler, you could see the uncertainty in the faces of other playground parents when our daughter approached their kids. By contrast no such stigma seemed to be attached to toddlers with glasses. (For a while I took to calling glasses “seeing aids”.)

    It’s an odd one. I’ve eventually arrived at the guess that the parental squirm was risk-by-association… that the perception is that “kids with hearing aids” are often ones with mental / emotional disabilities or disorders also, whereas glasses we see around us all the time on “normal” people of all ages, being (as it were) a bit more “in your face”.

    But there’s no such risk associations with … secret {gender}’s business. What there may be, though, is association with the general taboo subject of our reproductive bits. In “polite” conversation, “Cold weather today, isn’t it?” “Yeah, my _ _ _ _ are freezing off” may be filled in with ears fingers or toes, but rarely nipples or testicles… except maybe for … humourous effect.

    I’m not allowed to respond like that at the office and stay employed, though I know almost nobody who would actually be offended.

    1. Joe

      Miscarriage follow up:
      11% -> take more than a year to “get pregnant”
      11% -> miscarry (ie pre 20 weeks)
      1% -> stillbirth (ie post 20 weeks)
      7% -> premature (ie pre 37 weeks => medical intervention needed)
      4% -> significant genetic problems such as Down’s, deafness, cardiovascular problems

      About 1/3 of “pregnancies” come out not completely magical, not even counting complications only during giving birth. If you see parents with just two kids, it’s better than 50% chance they had something go not so smoothly in the process. But you’d never guess it from the way pregnancy and birth is presented to us socially, in the media, and (most negligently) by the medical profession.

      I’ve toyed with the idea of making and distributing “pregnancy dice”… roll the dice and see what happens. Bring some reality back into the understanding, both in terms of the possibilities and as a reminder that a great deal of it is chance outcomes that we have little to no control over.

  2. I don’t know why people aren’t more open about this stuff. I allow our boys into the toilet room, even when I have my period. It’s unthinkable to most women I know, but our older two (six and nine) are hugely respectful of the process and possibly know more about womens’ cycles than the average western girls the same age. It is important to know what’s going on for each other. How will we ever come to understand each other otherwise?!

  3. Julia

    Best wishes for a speedy recovery from your operation.

    Most likely I’ll be needing to deal with hot flushes in the not-too-distant future, and deciding what to share with male colleagues about that. Not looking forward to it.

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