Getting the lingo down

Note: tons of great content similar to this can be found via InterAct.

Intersex: term used for a variety of conditions in which someone is born with urologic, reproductive or sexual anatomy that doesn't fit the binary definitions of female or male. 

Differences of sex development or DSD: 

The medical community’s umbrella term for a handfull of medical diagnosis where a biological characteristic or anatomical structure does not meet binary definitions of male or female.

Not all folks with a DSD diagnosis claim intersex as an identity!

One last point: who does and doesn't identify as intersex is always political. It's often based on how people receive the medical framing of the diagnosis. Some intersex advocates expect that in a few years' time, calling intersex a DSD condition will sound like calling someone's gender identity or sexual orientation, a psychological condition. 

Anatomic variations: a big-picture view

The overall incidence of any variant of sex development is estimated to be as high as 1.7% of the population (others make lower estimates). This is as common as folks with naturally red hair.

These variations can show up on a few different biologic levels

Genetic: e.g. Kleinfelter syndrome and Turner syndrome

Hormonal: e.g. congenital adrenal hyperplasia or androgen insensitivity syndrome

Because we talk a lot about AIS in this episode, here’s some more detail: it's a condition where individuals have XY chromosomes. But the receptor for testosterone has a slightly different shape, so testosterone doesn’t dock at the receptor. So the organs and structures formed by testosterone signaling are not there. 

Anatomic: e.g. gonadal dysgenesis (the gonads - or testes or ovary precursors don’t form) 

Variations can be discovered at different time points throughout someone’s life

Genetic screening or fetal ultrasound

Time of birth

Childhood, often while investigating a hernia or abdominal mass

During unrelated abdominal surgery, where sometimes undeveloped gonads are found

As part of the medical workup when someone who expects to get pregnant cannot

The role of hormones within intersex care

The biology of hormones

Body shape, voice, hair growth and distribution, bone strength, muscle development - these all depend on hormones (like testosterone and estrogen) 

In binary individuals, these hormones appear around age 5 or 6 and increase around puberty. 

How does this relate to healthcare for intersex individuals?

TL;DR: it depends on the individual. There is no set regimen or hormone therapy for someone based on a particular DSD variation.

Some individuals with an intersex condition identify as a gender other than that assigned to them by the time of puberty. Hormone therapy can help alleviate the distress which some folks may feel about their body, and help them achieve their desired form of gender expression.

As a reminder: just because someone is intersex doesn’t mean they are transgender.

Hot take: having the correct amount of hormones for the gender and body that you wish to have is very important.

Shifting paradigms of clinical care for intersex folks

For many years, the medical community routinely practiced non-disclosure with intersex patients

The basic idea behind non-disclosure: clinicians purposefully choose to NOT tell an intersex individual about their variation. The person in question will instead be socialized as either male or female (based on whichever gender “made more sense” given their anatomy).

The ideology supporting the practice of nondisclosure goes back to the 1950s, when a psychiatrist named John Money at Johns Hopkins said nurture would always override nature.

Why we don’t like it: 

Non-disclosure forces intersex individuals to conform to rigid societal standards, compared with the driving principles of medicine, which are beneficence, autonomy, and justice.

Also, clinicians should avoid lying to their patients and should instead tell them the entire truth about their body

Non-disclosure is (thankfully) falling out of favor, instead replaced by the notion of shared decision making when it comes to clinical care for people with intersex traits or DSD 

In 2006, a consensus statement came out saying that patients with DSD variations and their families should be told the full truth.  This was affirmed again in 2016 update.

Though as Dr. Dalke points out, this movement away from non-disclosure is itself a relatively recent and, frankly, radical evolution in care 

Care for intersex folks: areas for improvement

The language and framework that clinicians use when talking about anatomic variations

Medical language can (and should) present the specific biology of intersex folks in a way that isn't pathologizing

For example, DSDs can be framed as variations - just like red hair vs. blond or brown. (Can you tell we are obsessed with red hair?) 

Clinicians can partner with their patients to help them find whatever language feels most affirming to them

The assumptions made by the healthcare system about people’s bodies, anatomy, sex, and gender 

Some examples: health forms that only list binary gender options, clinicians that assume a female-presenting individual can become pregnant

An aside to say that these assumptions are damaging for others, too – people who are trans and non-binary and people who have had organs like their breasts, uterus, or testicles removed because of cancer

The physical exam

A person’s body and biology aren’t a spectator sport

Please, kick trainees out of the room!

Ok, so what does it feel like when things are patient-centered?

Patients should feel as if they are in control of every decision that's made in their care. 

A provider who's really trauma informed is going to check to make sure that a person is giving consent to every aspect of a clinical encounter. 

A person should feel empowered to say no to something or anything at any point during a clinical encounter or clinical decision making and not feel as though they're doing something wrong or they're going to be punished by the healthcare provider for this.

Again, language matters: diagnosis and identity

Maria, our community voice, says it best: For most of my life it was a diagnosis and it felt like a diagnosis and I felt different. I just felt different. When I found out I had XY chromosomes, that kind of took me in a new direction - when at your core, you're like, am I a boy? What is a boy? It made me question everything about my identity. And I felt like I sort of started at the bottom to build back up what my identity looks like and where my gender and my sexual orientation, my gender identity, where that all fits in.