On Being an Intersex Woman with 5-Alpha Reductase Deficiency

A gynecologist once looked at me and said my “anatomy is hybrid… I see women, you should see a urologist, they see men and women.” I sat in that office as a seasoned intersex advocate. I spent the rest of the day crying and questioning my womanhood — not feeling woman “enough.”

I have 5-alpha reductase deficiency (5ARD). It is positioned in the literature as a condition affecting “boys,” “men,” or “genetic males.” I am a woman.

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Intersex is an umbrella term for sex traits or reproductive anatomy that fall outside what is typically characterized as a “normal” body. This includes variations in chromosomes, gonads, internal and external reproductive anatomy, and hormone production or response — collectively called variations in sex characteristics (VSC). Approximately 1.7% of the population is intersex.

Intersex is not a gender. It refers to innate physical sex traits. Intersex people can have any gender: there are intersex women, intersex men, and intersex non-binary people. Not all people with intersex traits identify as intersex, and some prefer terms like “differences in sex development,” “variations in sex characteristics,” or simply the name of their diagnosis — for example, androgen insensitivity syndrome.

Some intersex variations are disproportionately characterized as affecting only one gender. Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome, for example, is typically described as affecting women and girls — yet there are men with MRKH. Apollo Robert, who has MRKH, reflects: “I realized that there was a whole realm of possibilities for me to explore with my gender identity…and masculinity seemed to be the way forward for myself.”

My experience is the mirror image.

5-alpha reductase deficiency (5ARD) is a genetic variation affecting people with XY chromosomes. It occurs in the SRD5A2 gene and alters the 5-alpha reductase enzyme responsible for converting testosterone to the more potent androgen dihydrotestosterone (DHT). The lack of DHT in utero means the body does not develop as typically male or typically female.

I was assigned female at birth — and my gender identity has never differed from that. Yet the literature that describes my body describes it as male. What little exists also tends to pathologize it heavily, characterizing 5ARD as “rare” with an “exact incidence unknown.”

I have been an intersex advocate for years. I have struggled in my interactions with medical professionals and in my own mind, with not feeling woman “enough.” Whether that gynecologist’s remark reflected unconscious discomfort with intersex traits or overt discrimination against intersex people, I may never know. What I do know is that for a long time, my eating disorder filled the space that shame created — a self-perceived “good pathology,” while being intersex felt bad, shameful, even unspeakable.

Today, I have progressed in my acceptance of myself as a woman, an intersex woman because intersex women are women.