PCOS & Gender Survey

The average age of respondents was 26 years (the median was 24, the mode was 23, and the average distance from the mean was 4.32)

Respondents were overwhelmingly white (80.7%)

The majority of respondents were either female (38.6%) or nonbinary (42.8%) (including nonbinary individuals, 49.9% of respondents did not fit neatly into the gender binary)

62.6% of respondents stated that they were dyadic rather than intersex; however, the wording of the question seems to have skewed the results, causing respondents to be more likely to choose "dyadic"

Respondents that stated they were intersex largely believed that PCOS qualifies someone to be intersex

Respondents that stated they were dyadic stated that they'd "never been told otherwise" and/or believed they were dyadic because their primary sex characteristics were entirely female

Respondents that stated they weren't sure whether they were intersex or dyadic were largely unsure due to one of two reasons: either they were undecided on the debate over PCOS being a qualifier to be intersex, or they did not wish to "intrude" on the intersex community if they didn't belong

Of respondents who had experienced gender dysphoria, 35.5% stated that it was related to their PCOS, 23.2% stated that it was not related to their PCOS, and 41.3% were unsure if it was related to their PCOS

Of respondents who had experienced gender euphoria, 30.6% stated that it was related to their PCOS, 32% stated that it was not related to their PCOS, and 37.5% were unsure if it was related to their PCOS

50.1% of respondents agreed that PCOS made them feel like "less of a woman" (35.9% stated that PCOS did NOT make them feel like "less of a woman," 10.7% were unsure, and 3.2% preferred not to say; some respondents stated that the question was poorly catered to respondents who were NOT women)

Of respondents that were NOT cisgender, 48% stated that their PCOS contributed to their gender (16.7% stated that it was NOT related to their gender, 34.2% were unsure if it was related, and 1.1% preferred not to say)

Cis female respondents tended to either feel self-conscious or strongly about their womanhood due to their PCOS

Trans males felt comfort from the (traditionally) masculine secondary sex characteristics they developed as a result of their PCOS; additionally, many of these respondents felt as though their bodies were "telling" them that they were meant to be male; these respondents also had an easier time transitioning due to their naturally higher androgen/testosterone levels

Respondents that did not fit neatly on the gender binary had a wide range of experiences with PCOS and its impact on their gender; for some, it brought comfort, while for others, it caused insecurity, while others still had a more complicated relationship in which some symptoms of PCOS brought them comfort and others caused insecurity. The feminization of PCOS in the medical field triggered gender dysphoria in respondents in this category

Overall, respondents in all categories felt they were forced to have a more nuanced understanding of their gender than they would have had if they hadn't had PCOS

The majority of respondents found the survey through Tumblr (77.1%)

Approx. half of Tumblr respondents (50.3%) did not fit neatly under the gender binary (43.3% specifically chose “nonbinary”); 38.2% were female; 10.2% were male

Most Facebook respondents (68.3%) did not fit neatly under the gender binary (52.6% specifically chose “nonbinary”); 21.1% identified as female; 7.9% identified as male

The majority of Reddit respondents (65.8%) identified as female; 21.1% identified as nonbinary; 10.5% identified as male

Overall, respondents with PCOS were much more likely than respondents without PCOS to state that they were intersex - 19% of respondents with PCOS stated that they were intersex, and 19% were unsure if they considered themselves as such; 2.9% of those without PCOS stated that they were intersex, and 4% were unsure if they considered themselves as such

Based on the patterns observed between the two versions of the question those with PCOS were asked (do you consider yourself intersex for any reason? And do you consider yourself intersex due to your PCOS?), it is assumed that those who stated that they were intersex most likely consider themselves as such due to their PCOS.

Among respondents with PCOS, women were the least likely to consider themselves intersex, and the least likely to respond with “unsure”

Respondents with PCOS were slightly more likely than those without PCOS to believe that PCOS can qualify someone as intersex - 23% of respondents with PCOS believed that PCOS alone can qualify someone as intersex; 14.5% of respondents without PCOS believed that PCOS alone can qualify someone as intersex

35.7% of respondents with PCOS did not believe that PCOS alone can qualify someone as intersex

41% of respondents without PCOS did not believe that PCOS alone can qualify someone as intersex

Respondents with PCOS were slightly more likely to have a solid opinion on the matter than those without PCOS - 39.7% of respondents with PCOS stated that they were unsure if they believed that PCOS alone can qualify someone as intersex; 44.5% of respondents without PCOS stated that they were unsure if they believed that PCOS alone can qualify someone as intersex

Among both groups, women were the most likely to believe that PCOS alone does not qualify someone as intersex

Among those who were not women, those with PCOS were more likely to believe that PCOS alone does not qualify someone as intersex than those without PCOS; most of those without PCOS were unsure of their opinion on the matter

Between each group, those who had or had not experienced gender dysphoria were extremely comparable; in fact, they were nearly identical

PCOS seemed to make a difference in experiences with gender dysphoria; however, this is only the case when comparing the question asking respondents if their PCOS contributed to their gender dysphoria with the question asking if gender dysphoria was caused by physical traits typically NOT associated with their assigned gender at birth. Because some with PCOS experienced gender dysphoria from the condition due to reasons related with their assigned gender at birth, and others with reasons associated with traits NOT typically associated with their assigned gender at birth, it is difficult to make any conclusions from these data (PLEASE NOTE: this is a flaw of the survey itself, and would need to be addressed if this survey were to be held again in the future!)

Between each group, those who had or had not experienced gender euphoria were very comparable, though not as comparable as the patterns observed regarding gender dysphoria

PCOS did not seem to make a difference in experiences with gender euphoria. There is no clear pattern when comparing each gender group from both of the main groups of the survey; each gender group presents different patterns in this regard

PCOS did seem to have an impact on making respondents with it feel like “less of a woman;” however, this impact did not appear to be significant when compared to those without PCOS who claimed to have felt like “less of a woman” due to any physical trait. However, it was notably more likely for respondents with PCOS to feel like “less of a woman” due to their PCOS than due to reasons that were physical, but NOT related with their PCOS

When comparing responses among those with and without PCOS, feelings of being “less of a woman” were generally more comparable when respondents were asked if their PCOS had ever caused these feelings than when they were asked if they’d ever felt as such due to any physical traits NOT related to their PCOS

Those without PCOS were more likely than those without PCOS to be unsure if they’d ever felt like “less of a woman” due to any physical trait

Half of respondents with PCOS believed that their PCOS had made an impact on their relationship with gender

Responses to this question were most comparable between those who were NOT women and those who were unsure of or questioning their gender; women tended to extremely differ compared with these groups

Women were much less likely to believe that their PCOS had an impact with their relationship with gender, much more likely to believe that there was no relationship between the two, and were least likely to respond to this question with “unsure”

Irregular (or complete lack of) periods

Male pattern hair growth (hirsutism)

Hyperandrogenism (high levels of androgens/testosterone)

Insulin resistance

Polycystic ovaries

Infertility