Beneath Contempt: Politicians and Endometriosis Awareness

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March is Endometriosis Awareness Month. Yesterday, I attended an event at Queen’s Park to promote that. It was well attended by people with Endo, but nobody else seemed to care. Invitations to the event were ignored by politicians, who didn’t even bother to regretfully decline.

You know you’re beneath notice when you don’t even get a form letter.

Recently, I’ve gotten into several arguments about our health care system. The Canadian health care system is pretty good at emergency care. If you’re injured, or have cancer, or something that needs immediate care, you don’t have to worry about access.

It fails when it comes to chronic conditions. If you’re not about to die, then the system decides that you can be managed as a low priority.

Enter Endometriosis. Endometriosis, especially if treated by excision surgery, in younger women, can reduce symptoms, preserve fertility, and allow for more productive lives.

THIS IS WHY YOU SHOULD CARE. Even if you don’t “care”. More productive lives cost everyone less. Less money. Less tax burden. Less pain.

BUT… many women with endometriosis aren’t even DIAGNOSED with endometrosis for 10+ years after symptoms start. Most aren’t treated with excision surgery at all. It’s just not available. They’re offered hormonal treatments that supress symptoms, but don’t cure underlying causes. They’re offered psychiatric drugs, because the first physician response is often to explain that something is wrong with them because they can’t handle normal period pain, or pain with sex, or can’t get pregnant because they’re too stressed or not at ease with their femininity. It’s not a disease. It’s your fault.

Marriages fall apart. Careers fail.

There is a higher risk of suicide. Google it. Imagine being told you have an incurable, untreatable, progressive disease and you’ll be in increasing pain and have less and less energy for the rest of your life. Now imagine you’re 25. Maybe you just got out of school and have massive student loans. Good luck on working. Imagine you’re 35, and at the point where your career is peaking. You should probably gear down your activities, obviously you manage stress badly. You’re not feminine enough. You don’t have kids. BAD woman.

Endometriosis doesn’t kill you. It steals your life one piece at a time. It eats away at your self image. It poisons your soul.

The heartbreaking fact that goes with this is that excision surgery, while not a perfect solution, isn’t even mentioned as an option to many. Often it’s not available. There are only a handful of surgeons in Canada doing excision surgery. Canadian surgeons do fewer operations than American ones, because of government limitations. Experience teaches. Women have been turned away (in Canada) because their case is too complicated. Take a pill.

Of course, they can go to the States. If they can afford it.

Surgery isn’t seen as a necessary treatment in Canada. Most available surgery is an older, less effective process that often only makes things worse in the long term. The idea that excision surgery is different, that it actually makes things better for many and should be available and accessible… Radical.

Proper diagnosis and treatment would save lives. It would also have a direct economic benefit. Every woman diagnosed and treated, especially the younger ones, would spend less time going to doctor after doctor. Less time in emergency rooms. Less time in crisis centres. Less time in divorce court.

More time working and paying taxes. Possibly more time raising children. Or in the careers they wanted to have, and trained for.

False economy is when you try to save money but end up paying more. That’s what the Canadian health care system is doing now. It’s paying in women’s lives, dreams, and pain. It’s doing it to save money. To save time, and effort.

It’s writing off pain as meaningless on the balance sheet.

It’s totally ignoring how much women could contribute if they were given proper treatment. They’re just women. Who cares about women.

If you talk to women with endo, one comment tends to come up. “If this happened to men, they’d do something.”

BTW, in rare cases, men can suffer from endometriois. I mention it now, because one of the dismissals used to ignore endo is that it’s “just about infertility.” Who cares if a few women can’t have kids? Well… men get it too.

Endo is a real disease. It needs to be addressed. 1 in 10 Canadian women have endo. (Symptoms can be mild, or severe.) The estimated cost to the economy of that is 1.8 BILLION. And that’s not counting the pain and suffering.

If you’re not going to do anything about it, at least do use the courtesy of telling us why.

Written by Natalie Boon, a Toronto-based writer and indexer, who has been living with endometriosis for most of her adult life.