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September 20, 2021

Endometriosis is Underdiagnosed & Underfunded—& we Need to Speak about it.

 

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Are Prostates as Taboo as periods? I don’t think so.

I grew up in an era where menstruation was embarrassing, shameful even. I know that this era still exists for many. Periods were something to be hidden. Period leaks that could show through clothing were a girl’s worst nightmare.

At school, we would go to great lengths to try and make sure potential leaks didn’t happen. Including taking days off when our periods were too heavy to be managed by the simultaneous use of a tampon and a pad. Especially on school swimming days, when wearing a pad in a swimming pool obviously wasn’t possible.

Period underwear and waterproof pads didn’t exist back then, but I hazard a guess that even if they did, they wouldn’t have been built into school uniform swimming costumes. How inconvenient, and for many of us, downright mortifying to have to make up excuses once a month, to hide a natural fact, or to consider telling the truth and risk being laughed at by others.

Then there was sex. And the idea that we needed to hide our periods from our partners to make sure we didn’t gross them out. And the realisation that some of us were lucky to meet a partner that didn’t take issue with it.

Looking back today, it seems ludicrous to need to go to extensive lengths to cover up a natural process that enables our human race to exist. But this still happens, a current-day female experience for many around the world.

Period taboo to me is just another example of society’s fear of embracing women. If one lets a period get in the way of life, they can (and have) been considered weak. Debilitating syndromes such as endometriosis (which affects at least 1 in 9 women) are hardly known or spoken about. They receive much less funding than other syndromes that are just as common, like asthma and diabetes. To top it off, endometriosis is listed as one of the top 20 most painful health conditions.

I didn’t realise I had severe endometriosis until I found myself lying on the bathroom floor in a sweat one morning, crying out in agony. The pain was so bad I assumed my appendix had burst. I was 34 years old. A menstruation veteran, having had my period for some two decades.

Once I was scrapped off the bathroom floor by the paramedics, I found myself in the hospital emergency room diagnosed with a burst ovarian cyst, pressurised from a particularly bad period. I was told I probably had severe endometriosis but the only way to be sure was to cut me open and do surgery. You’d think this was a diagnosis solution from the 1900s yet it was 2017.

Whenever I had spoken to my doctors in the past about menstruation-related symptoms that were “getting in the way of life,” they were deemed normal. It took me finding myself in the hospital to learn that standard ultrasounds can’t pick up endometriosis. The very ultrasounds I had, year on year, to check if I had any pelvic or ovary-related issues.

Right now, this seems ludicrous. I had been suffering a common, chronic disease that I had visited the doctor regularly for, for decades. Yet, it didn’t get picked up, it wasn’t even considered. The medical equipment used to diagnose it was known to be completely ineffective. No surprise, it was misdiagnosed constantly.

I live in a Western society where I enjoy so many privileges that others don’t. I can afford period supplies—though I am still in horror that the Australian government taxed these essential items ’til recently, after people campaigned tirelessly to have the tax removed.

Yet my experience is far from adequate.

Unfortunately, like most issues, those who bear the brunt of discrimination and inequality are also charged largely with the responsibility of campaigning for better. Having to set aside or work through their trauma so that they can advocate for change. Don’t even get me started on the brutal, and yet again, common situation surrounding female pelvic organ prolapse and pelvic mesh.

Few people I know would argue that women’s experiences are less important than men’s. However, actions speak louder than words. There are far too many clear signals across society today that women’s bodies are not valued appropriately.

I am yet to meet a woman who hasn’t been impacted by the dark side of stigmatising the female reproductive system, genitalia, and menstruation; whether it’s being met with a lack of empathy or even ridicule, misdiagnosis of health issues, or significant financial outlay for essential items, or just experiencing a generally sh*tty feeling of being treated differently.

I’m raising my voice about this as much as I can, in any way I can. I know the burden to do so rests largely on women—and that takes even more energy than the situation itself. Nevertheless, it has to be spoken.

Let’s get as loud as prostates are—they sure get a lot more funding than ovaries.

~

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