I am intersex: ask me anything.

[MsXY]

Happy to answer any questions, no matter how personal.

This is really interesting, thank you.
Do you know what causes you to be entirely female despite having the XY chromosome?
Is there a medical explanation they've found for how your body was programmed to develop in a female way physically - eg not having facial hair, having wider hips etc, despite having the XY chromosome?

I am assuming it was clear from the baby's genitals that they were intersex. They did chromosomal testing and found she was a girl, so she is being brought up as a girl. We are not close enough to them to know more, but it was really interesting.

I would imagine so. Obviously there are several intersex conditions, some of which include hermaphroditism as one of the symptoms, but I'm not so clued up about other types of intersex.

This thread is very informative, thank you OP

Do you know what causes you to be entirely female despite having the XY chromosome?

As I understand it, foetuses are female by default (this is why men have nipples). If something goes wrong with the Y chromosome the body is not prompted to develop the gonad cells into testes which would produce testosterone causing the changes you associate with a sexually-mature human male.

Is there a medical explanation they've found for how your body was programmed to develop in a female way physically - eg not having facial hair, having wider hips etc, despite having the XY chromosome?

The medical explanation is Swyer Syndrome. Facial hair and wider hips are not caused directly by the relevant chromosome, but by the chromosome causing the gonads to develop with their appropriate endocrinological function - i.e. testes produce testosterone; ovaries produce oestrogen.

It is the hormones that promote the body changes that happen at puberty, so I didn't develop facial hair because I don't have testicles producing testosterone and I developed wider hips because I have taken HRT (oestrogen, as well as progesterone).

I just wanted to say thank you to everyone (with one notable exception...) for being so respectful and supportive. It's really encouraging to experience such a positive reception of my intersex status, even on an anonymous forum.

Really interesting and informative MissXY, thank you.

MsXY

Such an interesting thread. Thank you.

What advice would you give to parents who have discovered their baby is intersex?

I have a question, OP.

You mentioned having breasts. Are they natural? (sorry, this is so blunt!)
Also, you say investigations began because puberty wasn't happening. How old were you? I remember reading to be worried if no periods happen by 16 yo... Was that it?

This is by far the most interesting AMA in the current AMA flurry.

I feel like I’ve learnt a lot of biology stuff that I really should have known but OP you’ve been so patient.

Thanks

I haven't a question but just . I've been told I probably have a disorder of development although not suspected intersex as I have breasts, periods and an entirely normal reproductive system other than my external bits and bobs which aren't brilliant although somewhat functional...

I can sympathise a bit re uncaring medics and family - I have had a big op already, I have to catheterise to urinate, told will have difficulty concieving and giving birth, etc and most doctors and relatives don't get it. Been examined hundreds of times, dozens of scans etc, beginning at a v v early age - now diagnosed with PTSD. So I can only imagine how you must feel at times .

What advice would you give to parents who have discovered their baby is intersex?

Tricky. This suggests some sort of genital deformity/anomaly evident at birth which isn't something I had to deal with.

I would suggest seeking lots of guidance from the appropriate people. Current advice, I believe, is not to operate, or to foist a gender on the child (I read about a case where this happened, with catastrophic results - the person committed suicide).

Organise counselling or the child (and maybe the parents) and make sure they have a support network. Try to make sure they develop (i.e. puberty) at roughly the same rate as their peers.

Also, I think it's important not to inculcate a tendency to treat being intersex as a guilty or shameful secret. Be circumspect about who you tell, by all means, but it isn't something that should be kept hidden - and the less this happens the more accepted being intersex it will become.

You mentioned having breasts. Are they natural? (sorry, this is so blunt!)

Depends what you mean by natural. I was given oestrogen (initially orally, and then patches) and that prompted development of breast tissue. Some women aren't so responsive to hormones and so end up having surgical implants. That was offered to me, but I decided against it.

Also, you say investigations began because puberty wasn't happening. How old were you? I remember reading to be worried if no periods happen by 16 yo... Was that it?

I was 15 when I had all the tests. No periods, no breast development, no pubic or underarm hair, no other changes in body shape (i.e. hips).

This is by far the most interesting AMA in the current AMA flurry.

Just an interesting thread OP. Thanks for being so open (and patient!)

My question is: your menstruation presumably is governed by synthetic hormones as you don't produce oestrogen and progesterone naturally?... So not too different from those of us that are on the pill - but a higher dosage?
Does that mean that you can effectively choose the age at which you go through menopause, as it will be governed by the drugs you take?

I've been told I probably have a disorder of development although not suspected intersex as I have breasts, periods and an entirely normal reproductive system other than my external bits and bobs which aren't brilliant although somewhat functional...

No, that doesn't sound like an intersex condition, but sorry you've had to go through all that. I hope you get it sorted out as much as possible.

My question is: your menstruation presumably is governed by synthetic hormones as you don't produce oestrogen and progesterone naturally?... So not too different from those of us that are on the pill - but a higher dosage?

Yes, although there is no egg involved so strictly speaking it is a "withdrawal bleed", not a period. And in fact some people do take the contraceptive pill as their HRT - slightly ironic! I need a higher dose of oestrogen to combat osteoporosis, so use a patch.

Does that mean that you can effectively choose the age at which you go through menopause, as it will be governed by the drugs you take?

Yes, with advice from my endocrinologist. One plus of my condition is that I don't get PMT or mood swings and am reasonably optimistic that I won't suffer too many of the symptoms associated with menopause.

Thank you so much for sharing.

How many people in your life know about this? Given that you outwardly seem plain female do you think anyone would know if you didn’t tell them?

Did you or your parents suspect anything was wrong before the lack of puberty was noticed?

Does it have any impact on your day to day life?

How many people in your life know about this? Given that you outwardly seem plain female do you think anyone would know if you didn’t tell them?

Most friends and relatives know. A few colleagues who I'm close to. When I was a teenager I was adamant that I didn't want anyone to be told, but that has changed over the years. No, no-one would know about my being intersex unless I told them.

Did you or your parents suspect anything was wrong before the lack of puberty was noticed?

Yes, because of my height.

Does it have any impact on your day to day life?

Physically, not at all. Emotionally, a bit, as I still struggle with the infertility aspect.

OP my heart goes out to you. Are you in touch with anyone else with sawyers syndrome?

Swyers

Physically, not at all. Emotionally, a bit, as I still struggle with the infertility aspect.

Sorry to hear this.

OP my heart goes out to you. Are you in touch with anyone else with sawyers syndrome?

Only Huckleberry Finn.

Yes, I've met a few people just in the last few years. Facebook, etc., has been very useful.

Apart from on this thread, do you primarily describe yourself as 'intersex' or as having Swyers?
A member of my family has an intersex condition and yet I've never once heard them use the word intersex. They refer to the name of their own syndrome.
Some disorders of sex development are really not 'inter' the sexes, they are not all ambiguous. Some are still obviously a female or male condition. It seems that to sweep all of these very different conditions under the banner intersex makes little sense as they are all very different conditions.

Do you feel there's a bit of a political agenda to co-opt intersex conditions at the moment?

Yes, because of my height.

How tall were you? How tall are you now?