Folks with PCOS are already an undeniable, significant, important and valued part of my community. They are involved in advocacy and activism both online and within major intersex organisations. They belong, they’re my family.
As it relates to PCOS, hyper-androgenism is what is intersex, high testosterone causes secondary sexual development to represent a mix of post pubescent traits to varying degrees. Studies regarding hyper-androgenism will constantly say “PCOS like" because hyper-androgenism is intersex whether it results in ovarian cysts or not. The target academia know the symptoms of PCOS and so it is a useful short hand.
People also need to understand that intersex is a much less clinical term than people often assume, it isn’t itself a diagnosis. Intersex is an umbrella term unifying thousands of differences of sexual development, including PCOS. You don’t generally have studies about “intersex” as a topic without significantly narrowing focus to a single phenotype/genotype or group of such that is related closely. At this point the study usually will use clinical terms that are specific to the focus of the study and avoid use of nonspecific language such as “intersex” except in passing. “Intersex” as a term is often academically redundant when you are already describing non-polar bimodal sex developments.
But, because I know that explanation won’t suffice for some stubborn people, here’s an example of unambiguous academic use of intersex as it relates to PCOS. This table is taken from a study on hyper-androgenism in sports by the Indian Journal of Endocrinology and Metabolism.
-Common intersex conditions where the genotype and phenotype do not correlate.-
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3510954/#!po=71.8750
The Council of Europe, in a 2013 explanatory memorandum to Resolution 1952 on children’s right to physical integrity gave this definition:
“The term “intersex” refers to atypical and internal and/or external anatomical sexual characteristics, where features usually regarded as male or female may be mixed to some degree. This is a naturally occurring variation in humans and not a medical condition.”
http://www.assembly.coe.int/nw/xml/XRef/Xref-XML2HTML-en.asp?fileid=20057&lang=en
PCOS issues overwhelmingly align with key issues for the intersex community.
Access to hormonal therapies without needles gatekeeping
Access to doctors familiar with our needs
Access to fertility treatments without needless gatekeeping
Access to pregnancy termination on demand
Social acceptance/destigmatisation of visible differences in sexual development (for pcos may include body/facial hair, clitoromegaly, cystic acne, baldness etc)
Legal protection from discrimination
Dutee Chand was disqualified from women’s athletics by the IAAF on the basis of naturally occurring hyper-androgenism (within levels experienced by people with PCOS). The legal ruling of Dutee Chand vs IAAF effectively legitimises the ban policy, which prevents most women with PCOS from competing in women’s athletics at the international level, and at the national level as most countries take their lead from the IAAF. The suggested. Forced medical treatment is an unacceptable compromise, as it violates bodily autonomy and the human rights of individuals.
(There’s a racist element too. Testing is case by case when an athletes performance is “suspicious" and has been used to disproportionately target athletes of colour.)
This is an issue of discrimination against intersex people (including those with PCOS), which is being fought by intersex organisations. PCOS issues are intersex issues.
It’s important to remember as well that Intersex as an identity is a personal preference, intersex as an identity is about pride and visibility (often with the goal of social and political change in favour of access to services and legal protection), not everybody wants that visibility and that’s ok, what is empowering and liberating for one person might not be for another. So the label might fit, but you get to choose if you pick it up and wear it.
tl/dr: whoever sent the ask is wrong!
Hopefully this is helpful.
Feel free to direct message me with any questions, but I’m not here to fight.
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