Have you ever wondered whether people with Endometriosis in their vagina are more attractive than those with endometriosis on their ovaries? O.M.G SAME! Well, wonder no longer. Some lovely, thoughtful Italian men conducted a scientific study to put all our ponderings at ease. Vercellini and his mates found that you’re more likely to be a 10/10 if you’ve got endo nearer your vagina than if the source of your suffering is nearer your ovaries. Phew. Super glad we established that.
I stumbled upon this article after stumbling out of another disappointing gynaecologist appointment. I was sick and tired of doctors responding “we don’t know” to my endless questions around the whys and hows of my suffering. So, I decided to take matters into my own hands and hunt for scientific research on Endometriosis. When I searched “Endometriosis” on Google Scholar, this article on attractiveness was one of four total articles I found that were actually about endometriosis itself.
There were two takeaways from my little research sesh:
- Hardly any research has been dedicated to a debilitating disease that affects 1 in 10 people with uteruses.
- Existing within the tiny pool of research on Endometriosis is a peer-reviewed, fully funded study that not only sprays misogyny and psychological harm into the vulnerable eyes that read it. It brings us no closer to understanding Endometriosis or how to treat it.
Clearly, there is a big problem going on here. Attention is scarcely given to this major health issue, and when it is, the focus is totally off centre.
I’ve found that this is the case in endo sufferers’ everyday experiences in the New Zealand health system as well. It certainly was, and sometimes still is, in my experience. In the years of extreme pain before I was diagnosed with endometriosis, my GP’s response to my agony was to claim “painful periods are normal”, and “some people talk of this thing called Endometriosis, but we’re not really sure that it exists”.
Hold up. Let me just pause for a hot minute and point out that for a condition that apparently doesn’t really exist, there is a pretty hefty charity dedicated to it in Aotearoa. Endometriosis New Zealand is a foundation set up especially to raise awareness about endo. They explain that Endometriosis is a condition where tissue similar to the lining of the uterus grows in places other than the uterus. This can cause immense pain, irregular menstruation, fertility issues, digestive discomfort, and fatigue, to name a few. So yes, doctor. I think we’re pretty sure it exists.
When the numerous contraceptive pills she put me on worsened my symptoms, my GP’s response was “the pill should be helping”… But it’s not though?…
When I later presented to the Emergency Department with the most extreme pain I had ever experienced, the doctor, while giggling, remarked “relax! It’s not endometriosis or anything!”. I was handed panadol (just in case I hadn’t already thought of that) and sent home.
Although I eventually found a GP and, later, a gynaecologist who took my pain seriously, I’m one of the lucky ones. Endometriosis NZ CEO Deborah Bush told newshub that sufferers wait on average eight years to be diagnosed. It took RNZ presenter Susie Ferguson 14 years to get diagnosed, and another 12 years to receive surgical treatment. Sheesh. I waited three years and I thought that was bad enough!
So, why is it such an uphill battle to get any sort of support for an illness that burdens 10% of people with uteruses?
I came across a John Oliver episode about bias in medicine. He had neurobiologist Larry Cahill explain that up until very recently, only men were tested in medical studies, because it was assumed that women were pretty much just “men with pesky hormones”.
Okay, so my doctors respond “I don’t know” to 90% of my questions about my body because I inconveniently have estrogen and progesterone? Serves me right then I suppose.
Gabrielle Jackson, a Guardian journalist and author of the book Pain and Prejudice, explained to RNZ that almost all we know about the human body comes from male humans, male cell lice, and male rodents. Studies that have looked at female biology have mostly focused on personality types (and attractiveness, evidently!).
This horrific attitude in the science labs has trickled down to corrupt the minds of medical professionals, and actually the everyday lay person too. Gabrielle Jackson reckons we all have an intrinsic bias when it comes to women’s health issues, and that doctors will automatically trust women less because they don’t know much about women’s conditions.
I think we need a flowchart to sum all this up nicely (I’m nerdy like that):
My doctor told me that my life-altering condition doesn’t exist
…because…
Doctors don’t know much about women’s health
…because…
Scientists only poke around inside male rats
…because…
Females are a nuisance to poke
…because…
Females have rebel* hormones
*’rebel’ meaning ‘different to men’
Okay, now that my nerd needs are satisfied, it’s time to throw down the hard truths.
Because of my socioeconomic status, I am one of the few lucky ones. My health insurance allows me to avoid the public health system, so that I can have surgery every year, and gynaecology appointments every three months. People relying on the public health system are only allowed two endo surgeries in their lifetime, and are only offered a gynaecology appointment every 18 months.
I am one of the lucky ones, yet I am in pain everyday. I can’t study full time. I can’t hold down a job. I have been admitted to hospital eight times this year.
If this is what ‘lucky’ looks like in the realm of endometriosis, and 5% of our population exist within this realm, I think you’ll agree with me when I say:
A CALL TO ARMS IS IN ORDER
Endometriosis currently receives no funding in Aotearoa. Sign this petition to change that.
Tell your friends. Tell your scientist friends. Tell your doctor friends.
Give the suffering 5% of our population the tiakitanga we deserve.
Beautiful Mess 