IAmA young lady with XY Gonadal Dysgenesis. AMA!

Hey, thanks for doing this AMA!

1) how did you feel when you found out?

2) aside from having to take hormones, what other differences are there in your day to day life?

3) do you have any phenotypic differences? For example, are you taller than average, is your bone structure different, etc.

1) to be honest, I was devastated. I always wanted to have children and the inconsiderate doctor who diagnosed me didn't think to tell me I still had a chance because I have uterus which, luckily, is fully formed if a little small. I will need an egg donor though, just a side-effect of being a biological stub 🙂.

2) there isn't that many I notice. firstly, I don't need to worry about contraception (for babies anyway). I am a lot taller than other females (over the 6 foot mark) and some are intimidated but those who know me know that I am essentially the bfg.

3) as I said yes taller, I also need to watch my bone density. If it falls too low I could break a bone from a simple fall. taking the pill is supposed to stop this though. i was thinking if someone demanded "proof" I have a hand X-ray somewhere of my wrist bones almost being fused because I have no growth potential left.

hope this answered your questions thanks for asking them 😀

how old are you and how are you feeling?

I'm 23 and I feel pretty "meh" at the moment because I'm not taking my hormones as often as I should.

I feel like you're me. Also 23, Swyers, struggling with hormone.

I loathe the idea of trading bone density for depression, horrendous cystic acne, anxiety, bloating, periods, and a sex drive that is utterly irrelevant to me as an asexual.

Do you talk to friends about it? I've kind of given up, especially with guys because I always get the same canned responses of "are you a man" or acting like I'm some snowflake because my "brain is male" due to my chromosomes. Or the even weirder "so you don't need birth control" line of questioning.

Oh! For a question: how has XYGD affected your perceptions of gender and sex? Did you start thinking about that more, or was it largely unchanged from when you first found out?

yaaaaaaas 👏🏼👏🏼👏🏼. I so feel the trade up thing it's not funny that's why I always don't take my pill for ages lol I hate having a period.

I'm pretty lucky I have two amazing best friends that are so supportive, and my boyfriend who is also a gem.

and omg yes ! the fucking inquisition into "so I don't need to wear a condom ?" "so you can't have kids ?" like fuck off m8.

no I think I'm about the same except now I have a sex drive when I bother to take my pill, but I definitely like sex.

well shit any health concerns if you don't take them as frequently as recommended

yes my bone density could get too low and if I have a bad fall... also the mental health thing I get depressed too easily and other stuff. they are also supposed to be helping my uterus grow.

typing this out has guilted me into wanting to take them lol I'll find the packet later

Do you see yourself as a man or a woman? Before you found out about this did you feel different than others or that there was something 'wrong' with you?

well I was I think 18 when I found this out so I had no reason to believe that I was supposed to be anything other than a girl. as a young teenager I didn't really have a sexual drive and I didn't really "rebel" as teenagers usually do because I had no hormones.

I did feel different than females my age and my doctor said that our brain chemistry would be different, ie I think like someone who isn't influenced by either estrogen or testosterone.

edit: she also theorised that the reason I am showing signs of anxiety now and not earlier is that now I take the pill and am receiving doses of hormones from it my brain is trying to learn how to react to things in a new way (ie as a woman's brain) and could be struggling with itself. this made a lot of sense to me. eg should I stare at my bf and be like ok..... and store this info for later so I can have a calm and sensible argument when I've thought about everything like I would normally do oooor.... should I FLIP

THE FUCK

OUT

and yell at him now because it would feel sooooo good to be a bitch.

I'm not sure if normal female get this as well, or if it's just me. it's just one example 🙂.

What, in your point of view, are the biggest differences compared to other females around you?

You mean apart from the fact that I don't have ovaries lol. well I'm not entirely sure on this but I don't think I act like other females. I don't go crazy at my man over random stuff. if he wants to go out with his buddies fine. I accept what he says I don't pick it apart and look for lies

Maybe it's being tall that makes me so chill idk 🤔

Edit: WOW a lot of people are getting offended by this comment. Please note where it says at the beginning "I'm not entirely sure". Also I did not mean to say that all of my gender are like this. Be aware that my experience of life and yours are different. I'm talking here about personal experience, I'm not generalising a gender. Thanks.

Do you still feel intensely "romantic" emotions? Like the "giddy rush" of initial love/crush/liking and so on, even if there isn't (without medication) a sexual dimension?

I've need to feel attracted to someone's personality first, then they will become physically attractive to me.

but yes, I do get that weird giddy feeling and I had it long before I was diagnosed.

Did anything feel particularly wrong growing up? What lead to you discovering this condition?

no not really. I actually had a fall in the bathroom and I went to the doctor and happened to mention in passing that I hadn't had a period yet.

a blood test later I was back there and she was telling me I was in menopause and being referred to an endocrinologist. (she was wrong about the menopause just to be clear)

Hi! One of my friends is also going through the exact same thing. And she found out relatively recently too. She's also always wanted kids, and always gets really sad around children, especially toddlers, because of this. I always felt bad that I could never truly understand what she was going through. And she's having a hard time processing things right. Ow. My question is do you have any advice for someone who just found out?

I so understand this. looking at a newborn baby is like getting a knife to the heart and that knife's name is pain and jealousy.

your doctor will probably offer to put you in touch with a therapist/psychologist and it's a good idea to take this because they can help you come up with coping mechanisms. these are important because, unfortunately, that pain never really goes away, you just learn to deal with it better.

I've just realised but even I don't know how to help someone who has just found out that they are infertile. it really feels like you're on another planet. all I can think of is saying "I'm here for you. I know it hurts, I've been there too." no idea what someone who doesn't know could even say, sorry.

Since your karyotype is XY but outwardly you appear and live as a female, are you legally considered male or female?

it says female on my birth certificate.

I'm a biology student and from a purely scientific viewpoint I find this very very interesting, so thank you for sharing!

I have a bunch of questions. First of all, why was it neccessary to remove your would-have-been ovaries? I see that they didn't grow out quite as they should (as you described) but was the removal neccessary, or was it more for preventing problems with it (like people removing their wisdom teeth)?

Secondly, what kinds of hormones do you need to take? Is your body entirely unable to produce these hormones, or does it produce the wrong amounts of hormones because of the differences of genotype and phenotype?

Last but not least, from what I've heard (correct me if I'm wrong though) Swyer syndrome isn't vastly common. A friend of mine has a rare syndrome too, and participates in scientific work regarding that. Do you do that too, or have you ever been asked to? If not, would you? I believe humans like you might be a key factor to figuring out the scientific basis of gender identity, as that is something science still struggles with.

Feel free to skip over any questions that you don't feel comfortable with. And thanks for sharing!

it was necessary to remove them, had I not they eventually would have become cancerous. I was lucky that they had not already done so, as most people are diagnosed younger than I was, and still have cancer. it's very responsive to treatment though, so that's nice.

I take the pill. that's all I need to menstruate every month. if I want to get pregnant I've been told I'll need to take a fucktonne of different drugs all the time to carry the pregnancy to term, and even then I could have problems.

my body has the ability to produce estrogen, but it has no need to do so, so it never has. I have no problems with producing other hormones, such as adrenaline.

from what I've researched roughly 1 in 20,000 women has xygd. there's a "pure" form called xx gonadal blah blah blah maybe that's what your friend has, I think it's almost the same.

the doctor who diagnosed me said he had a colleague I could donate blood to for research but I never heard anything else about it after that.

My son is 5 and XXY. He doesn't know yet. Do you wish your parents had told you sooner than 18?

they didn't wait to tell me, I wasn't diagnosed until that age.

Do you wish you had known sooner? Or did you learn at a good age (re: longterm impact)

no I wish I had known sooner, I think 12-14 years would have been ideal just so I didn't go through high school thinking "oh one day I'll grow up and get married and have babies" then get it snatched away.

obviously I can still do those things to a certain degree, but it's not the same.

What are your thoughts on Transgender women whom, by and large, would share some of the same aspects that you have / do. Things like:

• they too are on HRT for life
• Most do have XY chromosomes
• are similarly chill when it comes to the men in thier lives
• are taller than average women.
• cannot give birth though many wanted too.

Have you ever befriended any? Being one myself, its refreshing to see someone having similar obstacles yet without all the same stigma, usual family problems; and not needing to join some culture you may not be comfortable with because people think its required. You seem chill and happy :)

good for them 🙂 I know one ftm man but we aren't close friends, and only my close friends and fam know of my condition so I have never gotten any rapport with a trans person regarding our mutual situations.

As I am a trans (mtf) lady, I'd like to ask what your feelings regarding gender identity, trans and intersex people are. You didn't have any reason to suspect you were anything other than a XX female until you were an adult - has this realisation affected your opinion on gender identities, or do you feel estranged by the lgbti community and just see yourself as a woman?

It's interesting for someone to fall under the lgbti umbrella unknowingly, without having grown up suppressing an identity like gay/bi and trans folk do.

wow ! this is an intimidating question for me because I've never really thought about it.

I do and always have supported the plight of our lgbtqi brothers and sisters, but I haven't really attempted to inject myself into their community because it's like ... ?? I haven't earnt it ? I haven't suffered or anything. also I look like a female and I'm hetero so people would be like what are you doing here ?

very thought provoking question, thank you !

Are you sexually attracted to men or women?

predominantly men. I've only ever been with men, but when I see a nice pair of titties I'm like DAAAAMN.

I read an article that said women can never be straight they can only be bi, gay or something in between. and that is true, at least for me. I dont think I'd ever act on it because vaginas are gross lol.

but I do sometimes wonder what my life would have been like if I was indeed born as a male. would I be straight or gay then ? I don't know honestly

Since you didn't find out until later, does that mean you didn't have a puberty until late? Had you developed any female traits before discovery?

I find this interesting. Have you ever felt like you were more a guy? Were you a tomboy as a kid? I'm just curious if there's any gender ties to your chromosomes at any point your life. It's not the same thing but there was an instance where two twin boys were born and during the circumcision there was an accident, so they performed a sex change operation. But the girl ended up transitioning to male. They had a fucked up upbringing though with a fucked up doctor, he ended up killing himself. So I'm not sure if that case is actually tainted by the doctor's fucked up methods.

wow that comment was a wild ride.

I was 18 when I was diagnosed, which means it was too late for me to go through puberty. I have a small amount of boobs because I have some weight on, one of the "signs" for this disorder is that the girl will be extremely tall and skinny.

my doctor has said that because I didn't receive either hormone as a teenager my brain chemistry was probably different to those around me. I was a bit of an oddball as a teenager, and I fit in better now, but I don't make friends easily, I don't know if that's related.

interestingly, after I started hormones I became A LOT more interested in my appearance. I lost about 14 kg, I learnt to do my makeup, I changed my fashion sense, in my picture I've covered my false nails which I never would have wanted as a teenager. my face shape has also become more womanly since being on the pill.

So, here's a probably too personal question: does your body menstruate? Without ovaries and hormones I would imagine no. And how do you feel about it, either way?

you only need a uterus and the pill to menstruate, everything else is optional.

it's cool not having a period if I don't want to, but I'm supposed to take the pill.

I just learned about this in endocrinology class. We were told that people typically discover around your age when they become concerned that they've never had a period in their life. Is this how you came to find out?

yeah kind of. my family are procrastinators so I didn't find out until I was an adult, but my mum had been saying for ages we needed to go to the doctor because my period had not made an appearance. eventually I went to the doctor because I fainted in the bathroom (unrelated) and my mum brought it up and the doctor fucking pounced

You mentioned you are taking the pill and are getting periods. Do you get light periods? Or are they painful? I'm just wondering because of the reduced uterus size too.

Also why don't you choose an option not to get the periods?

I'm not entirely sure how period cramps and that stuff works. maybe mine aren't as bad because I don't have ovaries in there to make trouble ? I definitely get some pain in there when the time comes. they vary month to month.

I do choose that in a way, I take 3 months worth of the pill then have a period. that's 4 per year instead of 12. I need to take the pill because it just helps out a lot with having healthy hair and nails, a healthy mind, good bone density and other stuff too 😊

Thank you for this AMA. 1. What is your opinion on the gender discussion you find here and there nowadays? 2. Why are you doing this ama? 3. In which country do you live and are there prejudices / discrimination / exclusions you are confronted with? 4 What do you do to cope with prejudices etc.?

there are no prejudices against me because I don't wear a sign on my back that says "I'm different". I live in a highly western influenced country, so I face no dangers. only my close family and friends have been told of it.

not sure what you mean "gender discussion" but I think as long as you're not hurting anyone you should do as you please 🙂

What inspired you to do an AMA? Do you think it would be easier for the haters to understand if the scientific community called your broken Y Chromosome a Z chromosome? (So that all the Y=male people would be instantly shut down.)

Edit: Great AMA. I read through all of the questions and answers written thus far and you sound like someone I would get along with. Too bad you already have a bf and don't live anywhere near me.

One thing I noticed was that you struggle to be consistent no your meds. You listed loads of pros and cons and I thought maybe I could gather them into one place. Then maybe you could use the list to help motivate you. I tried to use your own words where I could but then I tried to use the opposite in the other column (You'll have to help me if what I came up with needs editing. I tried to use question marks where I was inferring). Also it seems you tried some other "hormone meds I had to take for a while" so I'm not sure if they have the same effects. I hope this helps!

Another person with the same condition added "...acne, anxiety..." but I didn't know if I should include that.

I don't think you even understand what a nice thing this is that you've done. thank you very much 🙂💜

Hi, thanks for doing this AMA. How did your family respond to this? And you said you wouldn't know how to help someone else, but is there something you really missed from family/friends when you first found out that could've helped, or something that helped you recover or make progress towards it?

my mum was the one who was with me through it all, and she used her discretion what to tell and what not to tell family members about my condition. I was very secretive about it and just earlier this year I explained the whole thing to my brother and sister (both of whom have been cursed with being normal 😉). most of them still don't know 100% what my major malfunction is.

the thing that would have helped most is being referred straight away to someone who specialised in my condition, which didn't happen. I should have been referred to a large city hospital, because my need for surgery was great, but because no one had really heard of xygd before they didn't know there could already be terminal cancer within me.

luckily there was no cancer at all (a miracle, to be sure). if there had been I would have sued. they faffed me around for far too long before saying "ok maybe we should send you to an expert".

Did you play sports in school? How did you do?

shit

Did you date boys before you were diagnosed?

Did you find sex pleasurable before taking hormones?

yes and yes

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I'm real sorry about your luck. I've avoided replying to this one because I simply don't know what to say, so I'll tell you what I tell myself: don't worry about a thing, because every little thing is gonna be alright. Reggae music always makes me feel happy.

I'm not a very open person by nature (why am I doing an AMA then?). I'm not sure I could physically bring myself to open my mouth and tell someone I hardly know about my condition. There's no cure for me, so what is the point of raising awareness. I'd be stealing it away from people like you with things that already do or someday might have a cure.

If you didn't take hormones, what changes would occur?

not much really. I just would be the same as I was before I started taking hormones.

the hormones can make me feel really good mentally, and when I stop taking them I realise how depressed I was before I took them.

the changes that did occur were that I grew to my maximum potential, which is over six feet. I am about a b/c cup at the moment but this time last year I was flat-a. unfortunately as this wasn't caught early, I've "missed the boat" on puberty and i will most likely never get big boobs or have a full size uterus. if it's never detected through going to the doctor for not getting a period it's likely that eventually it would be detected later because cancer would grow on the streak gonads.

I am lucky that even at 19 my streak gonads were not cancerous, nor did they have pre-cancerous growth. a few other girls had the same karyotype (?) as I do, they were all younger than me, the youngest I think was 12-13 and they all had cancer, so I was extremely lucky, as my doctor (annoyingly) likes to remind me every time I have an appointment with her.

Do you know why your ovaries would become cancerous? It seems strange to me.

They pretty much just drift around in there until your body notices that they aren't supposed to be there and it attacks them.

Reading through your replies to past questions, you say that you missed puberty, or something to that effect and mention lack of hip and breast development. As awkward as this is, did this affect hair growth as well?

Yes it did. Before I started taking the pill my pubic and armpit hair would grow very slowly (which was amazing). Now they grow quite quickly. I also have a fucking snail trail and nose hair. How fucking good is that 🙃

Oh and my actual hair on my head was quite lifeless and limp. Estrogen brought it to life !

HOLY SHIT! I'm a medical student, and I'm currently in an OB rotation. My question is, have you noticed any differences in your body that tipped you off? Did you feel any physical differences from other 'normal' girls? What made you seek consult?

I'd like to know, because a case like yours is quite unique, and while I may have the perspective of a scientist in regards to cases like this, as a doctor, I have to understand the patient's perspective, as well.

mostly girls discover their illness when they go to the doctor in their early teens because they aren't having a period. usually, they will be tall for their age and quite skinny, and will have no breast or hip development.

Hi, first off thank you so much for this thread. I found out when I was 17 that I had xxgd (though it's still under investigation so to speak). I've never really read about anyone else having this before apart from in very stiff medical journals, so it's sort of comforting to read about someone going through so similar things, even if it's not entirely the same. I'm 23, have been on hormones since I was diagnosed, and have been signed up for a keyhole surgery to "have a look at things". My question is how you experienced that doctors and such explained the diagnosis to you, and also how long it took for you to come in contact with a specialist? Do you go on any check-ups or anything like so?

my doctors were really good. they basically said yeah this is what we need to do, if it goes this way we'll do this, and the other way we'll do that.

if you haven't seen a specialist yet I think you should. I saw an endocrinologist and a gynaecologist who specialised in my disorder. at the time of my surgery I met the doctor who I now see every six months for a check up. she is a gynaecologist who specialises in adolescent gynaecology.

I know someone who had a hysterectomy and is taking hormone meds daily I think. What happens if you don't take them?

I will become depressed. my Bone density could become very bad, and a light fall could see me breaking a bone.

what are your hobbies?

video games and travelling. they don't go together well unfortunately.

What kind of doctor specializes in diagnoses such as this? You mentioned endocrinologist. What other specialists did you see?

it went: my gp, an endocrinologist, a gyne who specialised in my condition, and my regular doctor I see at the hospital for check ups is also a gyne that specialises in adolescent gynaecology.

Thanks for your courage in doing this AMA!

I have couple question and I hope you won't find them offensive. Here goes:

Do/can you masturbate? What does your orgasms feel like?

Are you sexually active/have a partner?

It feels like warm butter trickling. I have a serious boyfriend and we make the sex. He knows of my condition and is very supportive.

Since you're only 23 it's probably a little early for that but have you thought about having kids? Since you don't have ovaries you are technically infertile but you could carry out an implanted egg cell. How do you feel about this perspective?

I have friends the same age as me and younger that already have several children. I consider myself a selfish person, and I'm definitely not ready to stop putting myself first yet.

To answer your question, yes I think about it a lot. I've been told to seek an egg from my close relatives if I can, but I'm not 100% on whether I want to have kids or not yet.

Do you drink mead /u/dovah-queen? Would you swing by for a glass if you come to the states?

Hail kinsman. I've never actually tried it but I am a big fan of alcohol's previous work in my life so far.

This was a question once asked of Einstein by a young boy so think carefully: What did you have for lunch today, and was it good?

sweats nervously

I had chicken wings. They were good.

I saw you already answered that you feel atracted to men but also to boobies. To be more clear, are you physically and sexually attracted to women, or just you find boobs attractive? I mean would you ever see yourself having a longterm relationship with a woman?

nah I'm just like das some nice tiddies mane and leave it at that. as I also mentioned I find vaginas gross. how my bf eats it for breakfast every day ??? who fucking knows

Are you a fan of Nadal?

I don't like tennis

Do you have normal genitals?

does anyone tbh

So, you have androgen insensitivity syndrome?

I'm not a scientist so idk ?? but I think I'm actually genetically female despite the fucked up chromies

Maybe I'm confused and I'm sorry if this is offensive or something but if I'm not mistaken you were born with a penis but also had a vagina? So if I saw you naked before any surgeries or anything would I have been looking at what I would assume was a man, or a woman? Sorry.

EDIT: I asked because I was kind of confused by some of the questions and some of the answers as well.

......... as I said in the description "perfect baby girl". I have female genitalia, and if you saw me naked you'd have no reason to think I was a male.

the surgery was internal, to remove what would have been my gonads, had I indeed been born a male. none of my "parts" we're fucked with.

Honestly, how do you know that you are supposed to be a woman? If you need hormone therapy, aren't you closer to being the opposite sex?

because.... I feel it ?