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Women with complete androgen insensitivity syndrome

262 replies

Tandora · 01/08/2024 17:22

https://www.nhs.uk/conditions/androgen-insensitivity-syndrome/symptoms/#:~:text=Girls%20with%20CAIS%20do%20not,make%20some%20sexual%20acts%20difficult.
Inspired by the dumpster fire of a certain thread that filled up just now -
AIBU to share some information about girls and women with CAIS. Many of these women and girls won’t learn about their variation in sex characteristics until adulthood. Some might never know and not without the assistance of modern technologies (that can test , eg, karyotype). For cases of CAIS identified at birth, most individuals are assigned/ registered/ raised female. (Yes sex can be assigned).

Anyone who could know a girl/ woman with CAIS in the real world, and tell her she is , in fact , unambiguously a boy/ man, because gametes, - well you would deserve worse than to be called a sexual fascist.

The NHS recognises the existence of girls and women with CAIS , and provides medical interventions accordingly.

https://www.nhs.uk/conditions/androgen-insensitivity-syndrome/symptoms/#:~:text=Girls%20with%20CAIS%20do%20not,make%20some%20sexual%20acts%20difficult.

https://www.ncbi.nlm.nih.gov/books/NBK1429/

Yes these conditions are rare, but the more we learn about the biology of sex development , the more complex the picture becomes, as with most areas of science/ biology/ medicine .

nhs.uk

Androgen insensitivity syndrome - Symptoms

Read more about the symptoms of androgen insensitivity syndrome (AIS), which vary depending on whether the insensitivity is partial or complete.

https://www.nhs.uk/conditions/androgen-insensitivity-syndrome/symptoms#:~:text=Girls%20with%20CAIS%20do%20not,make%20some%20sexual%20acts%20difficult.

OP posts:
Tandora · 02/08/2024 08:12

BreatheAndFocus · 02/08/2024 08:00

There isn’t a mismatch, as you put it. DSDs are medical conditions. There are a variety of DSDs, all defined. The tests identify which DSD a person has Knowing the DSD - ie what has gone wrong in their sexual development in the uterus - allows the specialists to correctly sex the person.

They don’t go, “Well, this person has A, B and C, so that equals Klinefelters. Now, are they male or female?” 🤔 All people with Klinefelters are male. (I’m just using Klinefelters as an example.)

As for the question, how do we know if someone has gone through male puberty? It’s obvious physically, and hormone tests can confirm it.

They don’t go, “Well, this person has A, B and C, so that equals Klinefelters. Now, are they male or female?” 🤔 All people with Klinefelters are male.

that is now the consensus around people with Klinefelters yes (it wasn’t always the consensus). But there are many other conditions where the situation isn’t clear cut , and deciding whether that person should be assigned male or female is exactly what medics need to do. The decision to assign someone’s sex in itself, of course, isn’t simply about whether they are properly described as male or female, that’s an even trickier question, and no, there isn’t any scientific consensus are a test , or sequencing of tests, to determine this.

OP posts:
toomanytonotice · 02/08/2024 08:10

Tandora · 02/08/2024 07:56

Plenty of well-informed MN regulars will be able to provide clarity.

For the avoidance of doubt I have a PhD in the subject , but thank you my dear 😘.

And due to that PhD I am perfectly well informed that the biology of human sex development is complicated despite what most pundits would like to believe.

In terms of the athletes in question, we know that they were assigned female at birth. They were excluded from boxing championships last year; a decision which the Olympic committee has called arbitrary. The boxing authority has failed to disclose what “test” they use to determine they were not eligible to participate, but has said it didn’t involve measuring testosterone. Based on public statements made at the time it is likely that these women may have xy chromosomes. We know nothing more about their medical circumstances .

This thread is educating people that some females have XY chromosomes, because a lot of those (oh so knowledgable) mumsnetters you refer to seem to be really struggling with that concept.

There is no faux wonderment here.

HTH.

Yep I hate these threads as people state opinions as if they were facts.

my phd is not in this area but I did a year of embryology, so I prefer to believe what I learned there than mumsnetters stating FACTS.

athletes with dsd are not my area of expertise, and I would therefore not offer an opinion. I believe generally though those who rise to the top probably do have an unfair advantage. I also believe we don’t have access to their full medical records and unless you do again you can’t have an informed opinion.

from a general population view though I think those with dsd have a right to live how they choose. Nobody should be pointing and shouting MAN. It’s a very different conversation to the trans argument which is biological males behaving like women.

imagine if you had a daughter. Physically she looks like a girl in every respect. You take her to the doctor at 16 because her periods haven’t started, and find out she has a dsd, has xy chromosomes, internal testes etc.

nobody should be telling that child YOU’RE A MAN. Have some empathy.

there used to be a lady with dsd on here. She left because of all the “you’re xy you’re a man” comments. She was born a girl, brought up female, had a blind vagina, and only found out as a teen she had a dsd.

ChazsBrilliantAttitude · 02/08/2024 08:10

Someone with CAIS is male. They may present as female but genetically they are male. If a way was found to induce androgen sensitivity they would go through male puberty not female.

Tandora · 02/08/2024 08:08

Porridgeislife · 02/08/2024 08:03

But they’re not women. They’re described in medical literature as under masculinised, or feminised, men, due to their genitalia failing to develop normally.

One of the key tests for checking for the presence of an androgen sensitivity disorder is the presence of a Y chromosome. This is how they rule out other DSDs such as MRKH where the woman will present with XX chromosomes.

They are absolutely not typically referred to in the literature as “men”.

If you are going to continue insist that people with CAIS are “men” simply because they have an XY chromosome, then there’s really nothing more I can say.
This contradicts what we know about the biology / science of human sex development, medicine,
law and lived realities of women with CAIS and those who know them, but you do you.

OP posts:
Porridgeislife · 02/08/2024 08:03

Tandora · 01/08/2024 17:22

https://www.nhs.uk/conditions/androgen-insensitivity-syndrome/symptoms/#:~:text=Girls%20with%20CAIS%20do%20not,make%20some%20sexual%20acts%20difficult.
Inspired by the dumpster fire of a certain thread that filled up just now -
AIBU to share some information about girls and women with CAIS. Many of these women and girls won’t learn about their variation in sex characteristics until adulthood. Some might never know and not without the assistance of modern technologies (that can test , eg, karyotype). For cases of CAIS identified at birth, most individuals are assigned/ registered/ raised female. (Yes sex can be assigned).

Anyone who could know a girl/ woman with CAIS in the real world, and tell her she is , in fact , unambiguously a boy/ man, because gametes, - well you would deserve worse than to be called a sexual fascist.

The NHS recognises the existence of girls and women with CAIS , and provides medical interventions accordingly.

https://www.nhs.uk/conditions/androgen-insensitivity-syndrome/symptoms/#:~:text=Girls%20with%20CAIS%20do%20not,make%20some%20sexual%20acts%20difficult.

https://www.ncbi.nlm.nih.gov/books/NBK1429/

Yes these conditions are rare, but the more we learn about the biology of sex development , the more complex the picture becomes, as with most areas of science/ biology/ medicine .

But they’re not women. They’re described in medical literature as under masculinised, or feminised, men, due to their genitalia failing to develop normally.

One of the key tests for checking for the presence of an androgen sensitivity disorder is the presence of a Y chromosome. This is how they rule out other DSDs such as MRKH where the woman will present with XX chromosomes.

BreatheAndFocus · 02/08/2024 08:00

Tandora · 01/08/2024 21:21

No you haven’t. You have explained how there are tests for karyotype, ways to look at internal organs, ways to test hormone levels. Of course there are, no one is disputing this. I have repeatedly explained to you that all those tests can do is tell you exactly those things- a persons karyotype, their hormones, the structure of their internal organs. in cases where there is a mismatch the results of those tests cannot tell you - give you a definitive answer - as to whether that person with those mismatched characteristics is properly described as male or female. There is no test that can do that.

Edited

There isn’t a mismatch, as you put it. DSDs are medical conditions. There are a variety of DSDs, all defined. The tests identify which DSD a person has Knowing the DSD - ie what has gone wrong in their sexual development in the uterus - allows the specialists to correctly sex the person.

They don’t go, “Well, this person has A, B and C, so that equals Klinefelters. Now, are they male or female?” 🤔 All people with Klinefelters are male. (I’m just using Klinefelters as an example.)

As for the question, how do we know if someone has gone through male puberty? It’s obvious physically, and hormone tests can confirm it.

WandsOut · 02/08/2024 08:00

YABU to suggest that the man who beat up a woman is anything other than a man beating up a woman.

If she had been brain damaged would you be posting this today to build awareness?

Tandora · 02/08/2024 07:56

Garlicfest · 02/08/2024 04:52

No. Just no.

You're doing the old, and now very tired, transactivist spiel of Oooh, DSDs are sooo complicated! How can any of us know what sex we really are, never mind anyone else, when there's all these mystical medical acronyms to consider?!

It's bollocks (even if the testes are internal for some).

Your title mentions COMPLETE androgen insensitivity, an unusual situation in which a male foetus fails to respond to masculinising hormones, so develops as physically female. They obviously have no testosterone advantage because their bodies are immune to it.

The NHS link you posted also covers PARTIAL androgen insensitivity syndrome, in which male hormones do affect development and do kick in stronger at puberty.

There are multiple DSDs that can make a boy baby appear a bit like a girl, but give that child the physical advantages of male hormones as he grows. If you want to discuss them, please be specific and drop the faux wonderment. Plenty of well-informed MN regulars will be able to provide clarity.

Plenty of well-informed MN regulars will be able to provide clarity.

For the avoidance of doubt I have a PhD in the subject , but thank you my dear 😘.

And due to that PhD I am perfectly well informed that the biology of human sex development is complicated despite what most pundits would like to believe.

In terms of the athletes in question, we know that they were assigned female at birth. They were excluded from boxing championships last year; a decision which the Olympic committee has called arbitrary. The boxing authority has failed to disclose what “test” they use to determine they were not eligible to participate, but has said it didn’t involve measuring testosterone. Based on public statements made at the time it is likely that these women may have xy chromosomes. We know nothing more about their medical circumstances .

This thread is educating people that some females have XY chromosomes, because a lot of those (oh so knowledgable) mumsnetters you refer to seem to be really struggling with that concept.

There is no faux wonderment here.

HTH.

OP posts:
MissScarletInTheBallroom · 02/08/2024 07:54

Garlicfest · 02/08/2024 07:49

can mean that some people [with PAIS] are male and others are female

Coming from the gender-captured NHS, @Tandora, I'd read that as more of an ideological statement than a medical one. They have - at least twice - insisted that female patients in women's wards could not have been raped as no males were present on the wards.

Yeah I don't think we can rely on an organisation which believes in the female penis as a sensible authority.

Garlicfest · 02/08/2024 07:49

can mean that some people [with PAIS] are male and others are female

Coming from the gender-captured NHS, @Tandora, I'd read that as more of an ideological statement than a medical one. They have - at least twice - insisted that female patients in women's wards could not have been raped as no males were present on the wards.

Tandora · 02/08/2024 07:42

Garlicfest · 02/08/2024 04:52

No. Just no.

You're doing the old, and now very tired, transactivist spiel of Oooh, DSDs are sooo complicated! How can any of us know what sex we really are, never mind anyone else, when there's all these mystical medical acronyms to consider?!

It's bollocks (even if the testes are internal for some).

Your title mentions COMPLETE androgen insensitivity, an unusual situation in which a male foetus fails to respond to masculinising hormones, so develops as physically female. They obviously have no testosterone advantage because their bodies are immune to it.

The NHS link you posted also covers PARTIAL androgen insensitivity syndrome, in which male hormones do affect development and do kick in stronger at puberty.

There are multiple DSDs that can make a boy baby appear a bit like a girl, but give that child the physical advantages of male hormones as he grows. If you want to discuss them, please be specific and drop the faux wonderment. Plenty of well-informed MN regulars will be able to provide clarity.

From the NHS website.

Complete insensitivity to androgens makes a person with XY chromosomes female. Partial insensitivity to androgens can mean that some people are male and others are female.

www.nhs.uk/conditions/differences-in-sex-development/

nhs.uk

Differences in sex development

Find out about differences in sex development (DSDs), a group of rare conditions where the reproductive organs and genitals don't develop as expected. Some people prefer to use the term intersex.

https://www.nhs.uk/conditions/differences-in-sex-development/

OP posts:
Garlicfest · 02/08/2024 04:52

Tandora · 01/08/2024 17:54

I wasn’t suggesting that the subjects of discussion on the last thread have CAIS, I don’t know their personal medical circumstances- is this even known/ reported?

This is general information to better inform understandings of the complexities of human sexual development, inspired by many of the really troubling posts/ claims made by posters on the previous thread.

Edited

No. Just no.

You're doing the old, and now very tired, transactivist spiel of Oooh, DSDs are sooo complicated! How can any of us know what sex we really are, never mind anyone else, when there's all these mystical medical acronyms to consider?!

It's bollocks (even if the testes are internal for some).

Your title mentions COMPLETE androgen insensitivity, an unusual situation in which a male foetus fails to respond to masculinising hormones, so develops as physically female. They obviously have no testosterone advantage because their bodies are immune to it.

The NHS link you posted also covers PARTIAL androgen insensitivity syndrome, in which male hormones do affect development and do kick in stronger at puberty.

There are multiple DSDs that can make a boy baby appear a bit like a girl, but give that child the physical advantages of male hormones as he grows. If you want to discuss them, please be specific and drop the faux wonderment. Plenty of well-informed MN regulars will be able to provide clarity.

RedToothBrush · 02/08/2024 04:34

Keep in mind that bigger women would be in a different weight class in boxing. Again for safety reasons.

So many of those physical differences you mention are actually taken into consideration in this particular sport. For safety.

Did I say safety reasons enough in this post. Nope.

There is consideration given to the safety of all competitors when boxing, to ensure the risk of serious harm is reduced as much as possible.

As soon as this disadvantages males versus females we get butterflies and poof this concept disappears.

RedToothBrush · 02/08/2024 04:31

Bigcat25 · 02/08/2024 03:35

I find this rather ridiculous bc all kinds of physical advantages exist for athletes that allow them to excel in the first place. The examples are too numerous to exist, however posters like yourselves aren't policing those. Swimmers are taller, so are able to essentially have a shorter distance to cover with every length of the pool, as well as having longer reach. Someone could be just as fast as someone taller but bc they're a foot shorter they won't get to the finish as quickly. Many other advantages exist for power, speed, lung and heart capacity, etc.

Except a woman with elevated levels of a known performance enhancing drug called testosterone would be banned from the same event for doping... The same levels these males are presenting with. But they are given a pass for it, because 'medical reasons'. And without regard for the safety related implications of this to female athletes.

So I think it does actually matter. And isn't really fair. Or safe.

Bigcat25 · 02/08/2024 03:35

titchy · 01/08/2024 17:30

And of course individuals with a DSD must be treated with compassion and empathy.

But equally not be able to enter sporting competitions where their enhanced testosterone levels and male puberty gives them an unfair advantage over natal females.

Not sure posting some details about the condition really changes that.

I find this rather ridiculous bc all kinds of physical advantages exist for athletes that allow them to excel in the first place. The examples are too numerous to exist, however posters like yourselves aren't policing those. Swimmers are taller, so are able to essentially have a shorter distance to cover with every length of the pool, as well as having longer reach. Someone could be just as fast as someone taller but bc they're a foot shorter they won't get to the finish as quickly. Many other advantages exist for power, speed, lung and heart capacity, etc.

RedToothBrush · 02/08/2024 03:21

About a previous incident.

The Olympics website noted that Khelif had been disqualified hours before a gold medal bout against China's Yang Liu in New Delhi after her elevated levels of testosterone failed to meet the eligibility criteria.

The Algerian Olympic Committee (COA) hit back by claiming the disqualification was part of a 'conspiracy' to stop them from winning a gold medal and said 'medical reasons' were behind high testosterone levels.

If they were a female they would have received a ban for doping. How is this fair?

We keep talking about how it's not fair to exclude. But it's certainly not fair to include either.

The IOC are screaming about prejudice. This is boxing. It should be about safety and fairness first, not identity politics.

grannysbay · 01/08/2024 23:48

So...... are you still going to be posting the same 'scientific evidence' when a woman is permanently disabled or worse by your policy of inclusion for all?

Ereshkigalangcleg · 01/08/2024 23:11

She's still ignoring her husband and baby on a different thread about this.

OuterSpaceCadet · 01/08/2024 22:12

Tandora · 01/08/2024 17:54

I wasn’t suggesting that the subjects of discussion on the last thread have CAIS, I don’t know their personal medical circumstances- is this even known/ reported?

This is general information to better inform understandings of the complexities of human sexual development, inspired by many of the really troubling posts/ claims made by posters on the previous thread.

Edited

But as you've created a thread about a thread, we can't know which claims you believe to be troubling? Why couldn't you respond to posters on that thread?

You then say you don't know if the athletes from the other thread have CAIS , so why is your thread about CAIS?

This is all quite vague. What's your agenda?

OuterSpaceCadet · 01/08/2024 21:59

whattywhattaa · 01/08/2024 17:34

But most people have a genetic advantage one way or another.

Big feet, long legs, height.

Absolutely.

We shouldn't need category of women's sports in the first place. Women just need to train harder, get with the times and believe better in their equality. And don't get me started about the exclusionary Paralympics!

MissScarletInTheBallroom · 01/08/2024 21:50

Tandora · 01/08/2024 21:21

No you haven’t. You have explained how there are tests for karyotype, ways to look at internal organs, ways to test hormone levels. Of course there are, no one is disputing this. I have repeatedly explained to you that all those tests can do is tell you exactly those things- a persons karyotype, their hormones, the structure of their internal organs. in cases where there is a mismatch the results of those tests cannot tell you - give you a definitive answer - as to whether that person with those mismatched characteristics is properly described as male or female. There is no test that can do that.

Edited

How often is there a mismatch?

RedToothBrush · 01/08/2024 21:44

Tandora · 01/08/2024 21:26

😂😂. And that’s my queue to stop ignoring my husband and baby . Take care all x

Edited

Women are perfectly capable of hating other women.

ditalini · 01/08/2024 21:36

TheToyBoxisFull · 01/08/2024 21:33

I am quite happy to call them (or other DSD people in similar situations) women in this case...It is hugely complex and they initially thought they were fully female/have female passports. This does not mean they should be ever allowed to compete in women's sports. It must be sad for them. But their disappointment cannot override safety and fairness.

I hope they were aware tbh, because having internal testes or streak gonads isn't a benign thing for the person with the dsd. They're at increased risk of cancer and either need their gonadal tissue removed or regularly monitored, just like any man with undescended testes.

TheToyBoxisFull · 01/08/2024 21:33

iamtheblcksheep · 01/08/2024 17:56

As sad as this is I really do not give a toss when it comes to women’s sport. They belong in the men’s category where they can compete with men of similar testosterone levels. I am so sick of this shit. Stop trying to get men into women’s sport. Bullying, name calling and all the other tactics haven’t worked. Now you’re going for the sympathy vote. These people are men. MEN!!

I am quite happy to call them (or other DSD people in similar situations) women in this case...It is hugely complex and they initially thought they were fully female/have female passports. This does not mean they should be ever allowed to compete in women's sports. It must be sad for them. But their disappointment cannot override safety and fairness.

OpizpuHeuvHiyo · 01/08/2024 21:32

Tandora · 01/08/2024 20:46

This isn’t about terminology. The same goes for sex.

The same does not go for sex.

@@ditalini at 20:31 gave a reasonable set of criteria.

I have already acknowledged there are people who have a Y chromosome and yet have some significant disadvantage due to some kind of chromosomal abnormality. Except in the case to absolute total insensitivity to testosterone, the appropriate category would be in the paralympics with a set of scaled points to quantify their disadvantage, as with all the other situations where a disadvantage can have many different levels of effect.

The women's category is for women, it's not a category for "people who wouldn't stand a chance in the men's category because due to one of a myriad of potential diversities they are not a peak physical specimen among the males of the species" in a context where the whole point of the activity is to find the peak specimens - male and female who are strongest/fastest/most skilled at each sport.

There are billions of people on this planet who don't stand a chance of getting an olympic medal due to some accident of birth. Everyone else just accepts that and participates in the sports they enjoy at the level they are able to access.

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