Guest post: ‘Differences in sex development’ (DSD) – what does it mean?

[MumsnetGuestPosts]

During your labour the midwife says, “Do you know what you’re having?” When the baby is born there is a quiet pause. “We’ll just call someone to come and take a look at baby,” they say.

Once every three days in the UK a midwife will spot that a baby’s sex development is different (referred to in healthcare as DSD). Sometimes DSD will be discovered later, for example during puberty when a teenage girl doesn’t start her periods - tests could show she has XY chromosomes and internal testes or XX chromosomes but hasn’t developed a womb.

Coverage surrounding Caster Semenya, and other debates about how to categorise sex and gender have generated a lot of confusing, inaccurate and sensationalised information around different sex development. All of this without thinking about the children and young people with different sex development and their families.

‘Different sex development’ is a term that is used to describe a range of conditions affecting the development of the genitals and reproductive organs. Factors like chromosomal variation, genetics, and sometimes infertility drugs can affect whether a person can produce or respond to sex hormones, which in term determines how the genitals and reproductive organs develop.

What do doctors mean by ‘atypical’ or ‘ambiguous’ genitalia?

For a girl this can mean that her clitoris is larger than usual, or her labia are fused together and bumpy. Sometimes a boy can have a penis with its opening at the base of the shaft, or the penis can be small and tethered to one side. Sometimes the scrotal sac can be shaped into two parts.

Spending your baby’s first week in a specialist children’s hospital learning about sex development can be extremely stressful. Sometimes a baby will need lifelong medication, for example if they have Congenital Adrenal Hyperplasia (46XX), which accounts for nearly a third of people with a DSD. Excellent guidance about those first few days can be found in our first days information pack.

Girls with a Y chromosome often don’t get a diagnosis until puberty. This can happen for girls with Complete Androgen Insensitivity Syndrome, which was featured recently in ‘Call the Midwife’ (BBC1, 2019). A young woman about to be married was concerned that she had not started her periods. Unknown to her, her body had transformed the testosterone produced by her testes into oestrogen, meaning she had an otherwise typical female puberty. The story centred on her diagnosis and the psychological impact it had. Thankfully, care surrounding the way the DSD is investigated and discussed has improved since the 1960s, but there is still some way to go. When a young woman discovers that she has a short vagina and no womb, she can need the support of a well-informed, loving family and help to understand her body.

Overall there are more than 40 different known biological pathways that affect sex development. Some people with different sex development reject the healthcare term DSD and prefer to use ‘intersex’. Most of the people that we meet are not interested in umbrella terms and prefer to learn about their own bodies - when talking to healthcare professionals they use their specific diagnosis or variation.

Dsdfamilies is a registered charity that provides information and support for children and parents. We have a website for parents and one for teens.

We have just published ‘Listen to Us’, a unique report following consultations with children, young people and adults living with DSD, and their families. It highlights the emotional and psychological needs of those living with DSD, as well as shortcomings in existing care. We’re calling for peer and social support, quality resources and thoughtful healthcare. Read the report.

This report was also raised recently on BBC World Service Health Check, where Patricia and Esme spoke about living with different sex development. Listen to the podcast (from 9m27s to 16m55s).

We are currently increasing our presence on social media, and are tweeting regularly with information on DSD conditions and factual support for parents and families @dsdfamilies

We support children, families and healthcare providers to raise happy, healthy, confident and well-informed young people who can speak up for the support they need.

Kate Davies will be returning to the post later this week to answer some user questions. Please note we cannot offer individualised medical advice on this thread.

[KateDaviesdsdfamilies]

Interestingly, @terfinginthevoid, just as we do not know the precise diagnosis - and it does make a difference - we cannot guess what kind of puberty she went through, and cannot - and should not - guess at her 'abnormal' genitalia - wording which is incorrect and unkind.

Did you watch that episode of 'Call the Midwife?' Would you have said that Lois is male?

[KateDaviesdsdfamilies]

Thank you everyone for all your comments and thoughts. Please do visit our website and follow us on twitter @dsdfamilies for support and advice.

This was a great opportunity for us to come and discuss our work and to start allaying the myths around dsd. Thank you.

[calpop]

yes for the rules to apply she must be a genetic and biological male. We do not know of course what kind of puberty she went through, though clearly some kind of puberty as she is an adult. We also know it cant have been CAIS (or the rules wouldnt apply) so she must, in very much all probability, have PAIS or 5 alpha reductase deficiency. In both cases she will have undergone some degree of male puberty. All this is clear despute her condition not being made public, because the very specific and detailed rulings apply. To suggest otherwise is disingenuous, innacurate and does not help foster understanding of people with DSDs.

[terfinginthevoid]

Kate, by definition DSD is an abnormality of development. An individual with XY chromosomes and testes with 'normal' genitalia will have a penis. Anything else is 'abnormal', ie different to normal.

I have not seen that episode of 'Call the midwife', but I presume the character had CAIS, and looked very feminine. I would say that someone with CAIS is biologically male with a disorder of sex development.
As a doctor, I do not see how you could properly explain their condition to such a patient without explaining this.

[calpop]

yes in CTM they had CAIS and looked/presented like a female and a woman. I think CAIS is a particular case where I would be fine with viewing the person as a woman, as genetically people with this condition have male chromosomes but do not experience male puberty or any of the biological affects of being male. Its tough though as they still have the male Y chromosomes (same with some conditions with SRY mutations).

People with other DSDs are, for me, genetically male plus experience male biology and are more appropriately thought of as men - as is CS who presents like one, lives like one and runs like one.

[Micah]

People with other DSDs are, for me, genetically male plus experience male biology and are more appropriately thought of as men - as is CS who presents like one, lives like one and runs like one

Personally I think it’s offensive when people, especially those who are only conjecturing at an individuals specific disorder, decide what sex someone is.

Cs may “present male”. So do many butch lesbians, who may or may not have a dsd, that is their business. You do not know what her genitalia is like. You do not know what kind of puberty she went through, and what her hormone/genetic balance actually does to her body.

You have no right to point and say that’s a male. I agree with @KateDaviesdsdfamilies, it’s incorrect and unkind.

[calpop]

its not incorrect. Its a fact. Have you read the IAAF guidelines?

It is not unkind to state fact. What is unkind is to use a young athlete for financial gain, in the wrong class and take medals away from people in the right class of races. I also find it unkind for an athlete to continue doing that once they know that they have a class-based advantage.

[Micah]

its not incorrect. Its a fact. Have you read the IAAF guidelines?

How is it fact?

You are taking the iaaf guidelines and hypothesising a dsd to fit.

You cannot say how puberty has affected her. You cannot say whether genitalia is masculine or feminine, or ambiguous.

Dsd’s are extremely complex and rare. Unless you are cs’s dr or privy to her medical records you can’t possibly state what is fact.

Sport aside, insisting someone with dsd is male or female with complete disregard with how they feel about their own body is just rude.

[calpop]

We'll have to agree to disagree I'm afraid. The information in the IAAF ruling makes it clear what kind of DSD Caster Semenya has if you understand the genetic basis for them. It's a shame that this case has become so prominent as it really shouldn't matter, except in the world of elite sports where people with DSDs are extremely disproportionately represented.

[MeetTheNewAccountSameAsTheOld]

@Micah

I wouldn't bother. The two posters in question have come over from the so-called Feminism and Women's Rights board. As far as they are concerned:

Experts don't know what they're doing if they disagree with the FWR board

Privacy and respect for an individual means nothing if it goes against the decision of that FWR board

Only the FWR board has the right to determine who somebody is, no matter if they've never met them and don't know the first thing about them, and that decision is holy writ (I'm willing to bet that most of them have decided I'm a man even though they don't know me and I'm not)

You'd have better luck talking to a wall.

[calpop]

lol I've posted and read on many boards of MN since 2002, including the chickens 😁 since long before FWR was around. It isnt a separate site you know. I am also an expert and I think the other poster you are referring to (is anybody questioning?) said they were a doctor. Differences of opinion are allowed, you must know, although I know the terminally woke have forgotten that.

[eurochick]

The IAAF Regs that Caster was challenging in the recent arbitration relate to a limited number of 46XY conditions. They are explained in layman's terms in the IAAF faqs posted above. The official press release about the court of arbitration for sport ruling is available online. We do not (rightly) have access to Caster's medical records but we do know a lot about the condition they have.

[KateDaviesdsdfamilies]

.... just adding a few things in....

Yes we can and do explain how bodies develop differently without calling a woman a man and that’s exactly why we need specialist doctors, nurses and healthcare professionals who understand the interactions between genetics and hormones.

If you look at our website at the experience of our Trustees, you can see the wealth of expertise and knowledge we have within the realms of paediatric endocrinology (myself nearly twenty years), where we are expert in dealing with individuals with a dsd with sensitivity. I can assure you that if we said a parent's baby was 'abnormal', for example, we would have very upset and confused families.

Does the presence of a Y chromosome automatically make someone a man? Even if they have breasts and a vagina? Would a woman with Turner Syndrome - XO (for example) be any less of a woman with the two Xs? Would a woman with MRKH without a womb be called a man?

We of course realise this a hotly debated topic, and it can tip into the Feminism boards. Hopefully by looking into our resources we can help people understand that not everyone fits into neat little boxes.

[calpop]

By coincidence, the condition that CS has has now been made public www.mumsnet.com/Talk/womens_rights/3610298-Latest-Caster-Semenya-Race

Did 10 years of obfuscation help with public understanding of DSDs I wonder? I think most people, myself included, would be happy to treat a genetic male with this condition as a woman (or a man) as they desired - except when it comes to sports.