Author Topic: PCOS Intersex Research  (Read 253 times)

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Offline Vervain

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PCOS Intersex Research
« on: September 05, 2018, 02:23:20 pm »
So I read an article somewhat recently, a month or two back, and while I was here I thought I'd mention it because I believe I've seen a few others mention that they also have PCOS. That's Polycystic Ovarian Syndrome for those who don't know. :)

Currently, the medical research community is discussing whether PCOS is actually an intersex condition. The reasoning behind this is that they've now found what they think is the cause, which is the hormone levels (particularly testosterone, iirc) of the pregnant mother. This affects the female fetus in a way that doesn't appear until puberty, when testosterone levels are way higher than they should be for a cis woman.

This jives with my own experience. When I was diagnosed, my endo told me I was one of her most severe cases with my T levels at around 350. That's in the range for a cis man. My experience with puberty was almost half male half female, because I had what are usually male experiences like hair in places it shouldn't be (face, tummy, butt), my voice dropped and cracked, and I had actual wet dreams. My clitoris is actually somewhat large for a cis woman, and my trans man ex told me that what I described with puberty and it just growing was something that happened with trans guys when they went on T. He commented that the size of mine was about what his had grown to after he was on T for awhile. It's not quite large enough to count as abnormal but as I'm primarily interested in women and have seen a lot of clits, it is definitely on the larger side.

I'm sharing this info because while it's still being researched and debated, finding out that it might be an intersex condition actually helped me a lot with emotionally dealing with it. It weirdly feels less like something "wrong" with me and more now that it was something that I had no control over (yeah like I had any anyway but brains work weird), that it was closer to being like a chromosome abnormality where it's just something that happens in utero and they're only now figuring out why. My sister has not sought a diagnosis but she also has the symptoms of PCOS so there is that as well. It's actually common to both my maternal and paternal lines; my half sister from my father has it too, and several of my aunts and cousins have PCOS or a hormonal/endocrine disorder of some kind.

I'm not quite comfortable claiming publicly that I'm intersex until the research is more definitive, but it's put my mind at ease. I think it also helps that I now have what is a plausible medical reason as to why it happened in the first place, and in my mind I can put it in the same category as my genetic health disorders. It's something that developed because of my mom's hormone levels during pregnancy, and they don't have the evidence for this yet but there's some suspicion of a genetic link. That would go along with PCOS being common in both sides of my family.

It's just... been a relief for me, and knowing this has helped reduce my dysphoria. It's also helped that I finally managed to get a doc to prescribe me spiro and this hasn't done miracles but it's reduced the rate of hair growth and the visibility by a fair amount, enough that it also has a definite effect on my dysphoria. I identify as genderfluid at this point pretty much but that's between female and non-binary, I am definitely not a guy.

I wanted to share this because I thought it might help someone else, and my experience with pretty much all of the PCOS forums out there is that the main focus is the infertility that's associated with it. I've got medical conditions that could kill me if I got pregnant, and ones that would definitely no question about it be permanently worsened by pregnancy. So that aspect has actually been a good thing for me, but about 99% of what I can find cis women talking about is infertility and pregnancy. Which, hey, I'm glad they're getting help and support they need but it doesn't really help me. Thus I post here, in case it helps someone who's been down this road too. :)

Offline MahoganyKiwi

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Re: PCOS Intersex Research
« Reply #1 on: November 10, 2018, 01:06:45 pm »
There seems to be a lot of push against PCOS being considered as Intersex, which I wonder if it stems from the fact of how many people have been diagnosed with PCOS. It would push against the idea that being intersex is extremely rare when in fact the sex binary isn't... as binary as we like to think it is.

Offline Alaskan Danielle

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Re: PCOS Intersex Research
« Reply #2 on: November 10, 2018, 01:22:42 pm »
There seems to be a lot of push against PCOS being considered as Intersex, which I wonder if it stems from the fact of how many people have been diagnosed with PCOS. It would push against the idea that being intersex is extremely rare when in fact the sex binary isn't... as binary as we like to think it is.
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Offline Alaskan Danielle

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Re: PCOS Intersex Research
« Reply #3 on: November 10, 2018, 01:24:51 pm »
There seems to be a lot of push against PCOS being considered as Intersex, which I wonder if it stems from the fact of how many people have been diagnosed with PCOS. It would push against the idea that being intersex is extremely rare when in fact the sex binary isn't... as binary as we like to think it is.
@MahoganyKiwi
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Offline HughE

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Re: PCOS Intersex Research
« Reply #4 on: November 12, 2018, 08:50:25 am »
There seems to be a lot of push against PCOS being considered as Intersex, which I wonder if it stems from the fact of how many people have been diagnosed with PCOS. It would push against the idea that being intersex is extremely rare when in fact the sex binary isn't... as binary as we like to think it is.

Basically it's the mirror image of what's happening in the assigned male population, where you also have more and more younger people with fertility problems and showing signs of endocrine disruption (and more generally disrupted prenatal sexual development).

This paper:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4698396/

provides a good summary of the evidence that something has gone very badly wrong in Western countries, that is resulting in male assigned people being born less male than they used to be.

My feeling is that something similar is going on in the assigned female population, and one manifestation of it is the soaring rates of PCOS. A very good case can be made that PCOS is a form of intersex. To start with you can induce PCOS experimentally in animals by exposing developing female fetuses to testosterone, something that can also produce both genital intersex and female animals with male brains, e.g.

https://www.ncbi.nlm.nih.gov/pubmed/15941725

I also found this paper,

https://www.ncbi.nlm.nih.gov/pubmed/24435776

which appears to be saying that a third of the women in their study (in Denmark) aged under 30 had PCOS, whereas only 10 percent of those over 35 did, pointing to a massive recent increase in the rate. What did they do? Redefined the criteria for what constitutes PCOS by adding in an additional hormone test, so that only 18 percent of the under 30s now meet it!

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