#these shared struggles taht we have when we exist outside of teh sex binary

[intersex-support]

hi! i have some hypothetical questions:

is it be possible to have more than one intersex variation? maybe if one was a chromosomal variation and one was a hormonal variation, or etc? can you have more than one very similar variation (e.g. PCOS & CAH)? (i think that one would probably go undiagnosed if that was the case)

is hyperandrogenism outside of hyperandrogenic PCOS always intersex? i assume that hyperestrogenism is intersex too? what about hypoandrogen/estrogenism?

are uterus differences intersex (uterus didelphys, bicornate & septate uterus, etc.)?

and finally a personal question: i have hyperandrogenic PCOS & recently had a total hysterectomy. my surgeon told me i had a very small cervix, to the point where they almost had to convert to an open surgery because they didnt think they could use the cervical opening to pull the parts through. could that be related to hyperandrogenism? or was it just a coincidence/within the dyadic size variation?

thank you & i hope youre all having a good day :)

Hi!

So generally, most intersex variations are pretty mutually exclusive, and it all really depends on the underlying genetic cause. Some intersex variations we don't know enough about the genetic cause or how it functions to really have conclusive information about some aspects of it, and it might be hypothetically possible for some intersex variations to be comorbid. I am not an expert and really can't say more than that, but generally, most people are only diagnosed with one intersex variation.

For PCOS and CAH, that's a bit complicated. Currently, there are several proposed sets of diagnostic criteria for PCOS (Rottendam criteria, NIH criteria, and Androgen Excess Society criteria.) Generally, a key factor of PCOS is exclusion with other hyperandrogenic variations, meaning that you have to rule out things like NCAH before getting diagnosed with PCOS. But there are people who are misdiagnosed with PCOS when they actually have CAH, and people with CAH who have polycystic ovaries. So there is some overlap between the two, but that doesn't necessarily mean they are actually comorbid.

Hyperandrogenism is not always considered intersex. If it's caused by Cushing's, tumors, or medication, that's generally not considered intersex. When it's caused by other congenital variations, it usually is considered intersex.

Hyperestrogenism in people with XY is considered intersex, although it's more commonly referred to as Aromatase Excess Syndrome.

Hypoandrogenism and Hypoestrogenism is called hypogonadism and it isn't always considered intersex, as sometimes it can be caused by injuries or infection. It is sometimes considered intersex, and is associated with intersex variations like Klinefelter's and Turners.

I think uterus differences are a little less clear cut-they aren't usually grouped together with intersex variations, and traditionally haven't been considered intersex. However, if people with uterus differences feel solidarity and benefit from the support of intersex community, I'm not going to tell people that they can't participate in intersex community. This is one of those times when it really comes down to self + community evaluation about whether or not intersex is a label that makes sense.

I couldn't really find any data showing definitively that PCOS causes a shorter cervix, although there did seem to be some association. So I don't really know for that one!

Overall when it comes to defining what is and isn't intersex, I usually refer back to InterAct's explanation of what intersex is:

An innate physical trait that falls under the umbrella of variations in sex characteristics, generally meaning that the variation:

Shows up in a person’s chromosomes, genitals, gonads or other internal reproductive organs, or how their body produces or responds to hormones;

Differs from what society or medicine considers to be “typical” or “standard” for the development, appearance, or function of female bodies or male bodies;

and is present from birth or develops spontaneously later in life

Is often significant or noticeable enough to cause stigma or violence in a person's life, whether through explicit discrimination or implicit ways that society enforces the sex binary

I'm not the authority on what is or isn't intersex, and there are definitely some areas where it's clearer than others. I just generally consider whether or not something is an innate physical trait not caused by temporary factors such as a medication, whether or not that trait causes variations in sex characteristics, and whether that trait is considered within the "typical" variation of dyadic sex characteristics or if it's outside the sex binary in a way that causes societal stigma. I'm not interested in telling people whether they are or aren't intersex or denying people intersex community resources if they feel like their variations meet the definition.

I hope that makes sense!

-Mod E