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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
SilenceInside · 01/08/2024 20:31

@Tandora what happened to your "let's have a reasonable debate"! A face palm is hardly helpful. Explain why I'm wrong.

ditalini · 01/08/2024 20:31

Participation in female sport:

Does this person have a Y chromosome?

If yes, is the sry gene present (to exclude Swyers)

If yes, is this person's body sensitive to testosterone (to exclude CAIS)

If yes, they should compete in the Open category, not the female category.

If there is a desire to include PAIS then there needs to be research to justify inclusion, not exclusion.

Tandora · 01/08/2024 20:43

SilenceInside · 01/08/2024 20:31

@Tandora what happened to your "let's have a reasonable debate"! A face palm is hardly helpful. Explain why I'm wrong.

sorry just pure exasperation. What you wrote just makes little sense. Of course we can identify sex categories in cases where there is no dispute - we are all agreed, all the various, complex factors that make up someone’s sex are aligned. In cases where there is a dispute, however, there is no objective, reliable test to determine a persons sex/ gender.

OP posts:
KeirSpoutsTwaddle · 01/08/2024 20:46

So much bollocks talked in so small a space.

Tandora · 01/08/2024 20:46

OpizpuHeuvHiyo · 01/08/2024 20:29

Quite right. They obviously mean a sex test but are using the word gender because they are too coy to use the word sex (which was normal usage up till about 10 years ago)

There is absolutely no way to verify someone's gender, or lack of gender. But sports are subdivided according to sex because there's absolutely no legitimate reason to subdivide according to gender.

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

OP posts:
Tandora · 01/08/2024 20:48

KeirSpoutsTwaddle · 01/08/2024 20:46

So much bollocks talked in so small a space.

if I am talking bollox please do describe this sex test, and point me to the scientific consensus endorsing it.

OP posts:
MissScarletInTheBallroom · 01/08/2024 20:48

Tandora · 01/08/2024 20:43

sorry just pure exasperation. What you wrote just makes little sense. Of course we can identify sex categories in cases where there is no dispute - we are all agreed, all the various, complex factors that make up someone’s sex are aligned. In cases where there is a dispute, however, there is no objective, reliable test to determine a persons sex/ gender.

Edited

Are you a doctor?

MissScarletInTheBallroom · 01/08/2024 20:49

Tandora · 01/08/2024 20:48

if I am talking bollox please do describe this sex test, and point me to the scientific consensus endorsing it.

I have done so, in this thread.

Tandora · 01/08/2024 20:49

MissScarletInTheBallroom · 01/08/2024 20:49

I have done so, in this thread.

Where?

OP posts:
SilenceInside · 01/08/2024 20:49

@Tandora of course there are tests that can determine sex in complex cases. Are you concerned that because there is no single individual test that can be done? So the fact that a series of different tests might be necessary, that's an issue for you?

SilenceInside · 01/08/2024 20:50

If that wasn't possible, then DSDs would not be known or identifiable.

Tandora · 01/08/2024 20:50

SilenceInside · 01/08/2024 20:49

@Tandora of course there are tests that can determine sex in complex cases. Are you concerned that because there is no single individual test that can be done? So the fact that a series of different tests might be necessary, that's an issue for you?

tell me the series of tests, and how the different factors are to be prioritised/ balanced/ reconciled?

OP posts:
MissScarletInTheBallroom · 01/08/2024 20:51

Tandora · 01/08/2024 20:49

Where?

I explained to you earlier in the thread that doctors will test for genetic karyotype, examine external genitalia, use ultrasound to look at internal reproductive organs, sometimes also test hormone levels, and on the basis of those tests they will diagnose a particular DSD, which is sex specific.

MissScarletInTheBallroom · 01/08/2024 20:52

Tandora · 01/08/2024 20:50

tell me the series of tests, and how the different factors are to be prioritised/ balanced/ reconciled?

Why does anyone need to "tell you" the specifics? Go and find a book about it, or ask a doctor, or go back to uni and study medicine yourself, if you think you know better than the doctors who diagnose DSDs.

MissScarletInTheBallroom · 01/08/2024 20:53

SilenceInside · 01/08/2024 20:49

@Tandora of course there are tests that can determine sex in complex cases. Are you concerned that because there is no single individual test that can be done? So the fact that a series of different tests might be necessary, that's an issue for you?

I think @Tandora is really only concerned that the answer might be "yes we can tell who is male and no they shouldn't be competing in women's sport".

SilenceInside · 01/08/2024 20:53

Someone up thread gave a pretty decent run down. I think the exact sequence of tests needed would vary depending on the initial investigations. Probably a fairly complex flow chart could be produced. It would start with identifying chromosomes and comparing that to expected body type, and go from there. In 99.9% of cases that would be all that's needed. Further investigation would be needed if there was a mismatch or ambiguity.

You're suggesting that "complex" means "not possible".

Tandora · 01/08/2024 20:54

MissScarletInTheBallroom · 01/08/2024 20:51

I explained to you earlier in the thread that doctors will test for genetic karyotype, examine external genitalia, use ultrasound to look at internal reproductive organs, sometimes also test hormone levels, and on the basis of those tests they will diagnose a particular DSD, which is sex specific.

Yes but that doesn’t give you a definitive answer to what sex category someone belongs in. It tells you what karyotype they have, it tells you what their internal organs look like, etc. in cases where there is a mismatch in the various factors (eg between karyotype or phenotype) it doesn’t tell you which to prioritise or how to balance them. It doesn’t tell you whether a specific person, whose sex is in question, is male or female, because there is no one factor that determines this.

OP posts:
Tandora · 01/08/2024 20:57

SilenceInside · 01/08/2024 20:53

Someone up thread gave a pretty decent run down. I think the exact sequence of tests needed would vary depending on the initial investigations. Probably a fairly complex flow chart could be produced. It would start with identifying chromosomes and comparing that to expected body type, and go from there. In 99.9% of cases that would be all that's needed. Further investigation would be needed if there was a mismatch or ambiguity.

You're suggesting that "complex" means "not possible".

I’m saying there is not yet any scientific consensus around that flow chart, sequencing, series of investigations, etc in cases of mismatch/ ambiguity.

OP posts:
Moonmelodies · 01/08/2024 21:00

Why not use the same tests that vets use for other mammals?

Tandora · 01/08/2024 21:01

MissScarletInTheBallroom · 01/08/2024 20:52

Why does anyone need to "tell you" the specifics? Go and find a book about it, or ask a doctor, or go back to uni and study medicine yourself, if you think you know better than the doctors who diagnose DSDs.

I don’t need to. I have studied this, and I know that there isn’t such a test. You are telling me there is one, so I’m asking you if you know this, tell me what it is.
We can diagnose variations in sex development, yes, that doesn’t mean there is a test that can tell you what sex category a person belongs in where there is a mismatch between various different factors. .

OP posts:
BreatheAndFocus · 01/08/2024 21:01

Tandora · 01/08/2024 20:50

tell me the series of tests, and how the different factors are to be prioritised/ balanced/ reconciled?

It doesn’t work like that. I speak as someone with a person close to me with a DSD. In the vast majority of cases, sex is clear. Very occasionally, the external genitalia are ambiguous or cause to question the sex. Then specialists do a number of tests - not just to determine the sex of the baby, but to see if there are any current or potential medical issues.

Those tests, which include chromosome testing, endocrine testing, scans, etc etc, will then lead to a diagnosis of a specific DSD, which will then allow the doctors to determine the sex of the baby.

SilenceInside · 01/08/2024 21:06

No it's not true. The definitions of DSDs are well defined, and we have the ability now to understand even very complex cases involving specific gene issues and things like mosaicism. So if any individual case is unusual, it can eventually be well defined.

Again, it's this idea that complex means not possible or somehow debatable.

Someone's sex category just means what reproductive category their body falls into, male or female. Someone with CAIS is male, although they present phenotypically as (apparently) female. They don't go through male puberty and don't respond to testosterone and so I can see a case for inclusion in female categories for sports and any other sex segregated space.

Tandora · 01/08/2024 21:10

BreatheAndFocus · 01/08/2024 21:01

It doesn’t work like that. I speak as someone with a person close to me with a DSD. In the vast majority of cases, sex is clear. Very occasionally, the external genitalia are ambiguous or cause to question the sex. Then specialists do a number of tests - not just to determine the sex of the baby, but to see if there are any current or potential medical issues.

Those tests, which include chromosome testing, endocrine testing, scans, etc etc, will then lead to a diagnosis of a specific DSD, which will then allow the doctors to determine the sex of the baby.

I’m just going to repeat this as there is no other way to say it:

those tests/ investigations tell you what karyotype a person has, they tells you what their internal organs look like, etc. however, in cases where there is a mismatch in the various factors (eg between karyotype or phenotype) it doesn’t tell you which to prioritise or how to balance them. That becomes a matter of individual assessment, and clinical judgement , and often some guess of work . There are general trends in how doctors may chose to assign sex for certain conditions , but these are also variable.

OP posts:
RedToothBrush · 01/08/2024 21:12

OP thinks sex = gender.

You can't argue with that level of argument.

Tandora · 01/08/2024 21:13

SilenceInside · 01/08/2024 21:06

No it's not true. The definitions of DSDs are well defined, and we have the ability now to understand even very complex cases involving specific gene issues and things like mosaicism. So if any individual case is unusual, it can eventually be well defined.

Again, it's this idea that complex means not possible or somehow debatable.

Someone's sex category just means what reproductive category their body falls into, male or female. Someone with CAIS is male, although they present phenotypically as (apparently) female. They don't go through male puberty and don't respond to testosterone and so I can see a case for inclusion in female categories for sports and any other sex segregated space.

The definitions of DSDs are well defined

you are not following. DSDs are well defined; having a well defined DSD, however, does not answer the question of whether that person who has that DSD is properly described as “male” or “female”, which is what the sporting authorities are trying to do.

(You acknowledge this yourself when you say that you can “see a case” that people with CAiS are properly described as female).

OP posts:
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