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In a month characterised by uplifting, empowering and screaming into the void, unfortunately, there is no shortage of disappointment. One such disappointment: the lack of awareness surrounding Endometriosis Awareness Month, specifically the lack of meaningful action in supporting those who experience this condition.
But, before we go on a massive rant, let’s be the informative girlies we are known to be.
What is endometriosis?
Endometriosis is an often painful condition in which tissue similar to the lining of the uterus grows in other parts of the body. In Australia, the condition affects roughly 1 in 9 people assigned female at birth (AFAB) with very rare occurrences in cis-gendered men. Often affectionately (read: sarcasm) referred to as ‘endo’, the condition produces many physical symptoms, including but not limited to: abdominal pain, heavy periods, bleeding from bladder or bowel – and infertility. As you can imagine, it’s also very mentally taxing and, you guessed it, financially stressful to seek diagnosis and treatment.
Research conducted around endo tends to focus on the infertility part of the condition. While uteri/uteruses don’t solely exist for making babies, and we’d like medical research to reflect that, we’ll save the dissertation on the implications of deprioritising a person’s gynecological health for their ability to procreate for another day. Looking past this, we’ve noticed a general lack of research into accessibility to treatment, financial burden, or any consideration for the transmasculine experience with endo (more discussions on this here).
With a report from the Australian Institute of Health and Welfare estimating the personal cost of endo at $30,900 (as at 2017), it feels like a slap in the face to have a dedicated awareness month when the reality for those living with the condition is still quite distressing; and mostly invisible.
Endo diagnosis and treatment.
Common methods used to diagnose endo are quite invasive; transvaginal ultrasounds or full blown (and expensive) procedures, such as laparoscopic surgery, leave patients with a heavy choice to make when pursuing the healthcare they need. Nobody enjoys a transvaginal ultrasound wand poking about their bits, least of all those who have a ~complicated~ relationship with the bits we were born with.
And none of these preliminary procedures touch on the actual treatment of endo, which consists of surgeries and hormonal therapy; a treatment most of us will know is quite a rollercoaster to experience. Furthermore, on the topic of hormonal therapy, there is a lack of research on the effects that endo treatment will have on patients who already undergo hormonal therapy for other reasons like early menopause, cancer treatment or any kind of gender affirming procedures.
It’s all quite a clusterfuck, as so many discussions around AFAB healthcare tend to be. However, there is a glimmer of hope among all of this.
We’ve noticed a rising number of research papers that attempt to consolidate and officialise the needs of transmasculine and non-binary patients of endometriosis treatment, as well as ways to create much more accessible forms of diagnosis for the condition.
The government began a National Action Plan for endo in 2018, which has received an update this year claiming to have committed $87.2 million to research, clinical care and awareness/ education on the condition. However, when compared to the over $200 million spent by Australians annually in response to the condition and the estimated $7.4-$9.7 billion economic burden that endo creates, it leaves a lot to be desired.
It seems that despite the enormous impact that endo has on our community, the dedicated awareness month has gone as quickly as it came; and no one’s a fan of coming too quickly.
Learn more about endometriosis in Australia
Here’s some resources to learn more about endo and, for the medically literate, we’ve also added a few medical journals to sink your teeth into. But, Happy Endometriosis Awareness Month, I guess…
https://www.spherecre.org/research/current-trials/endometriosis-management-plan
https://www.gendergp.com/endometriosis-not-just-women/
https://www.abc.net.au/news/2023-03-31/being-transgender-with-endometriosis/102164446
https://www.health.gov.au/sites/default/files/national-action-plan-for-endometriosis.pdf
https://www.health.gov.au/sites/default/files/2024-03/endometriosis-progress-report-2024_1.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10501128/
https://pubmed.ncbi.nlm.nih.gov/27998009/