IAmA woman with an intersex condition called Androgen Insensitivity Syndrome. AMA.

15 years after finding out, how do you see yourself? Do you feel you have a pretty healthy relationship with who you are?

Depends on the day to be truly honest. Some days I'm perfectly fine and accepting of my condition, whereas other days I loathe who I am. Internally, I know that a lot of it comes down to my craving to feel accepted as I struggled with parents who essentially ignored the condition, a religious upbringing that vilified the condition, an abusive first ex who used it against me, and other struggles.

I went through a breakup last year (together for almost six years), and the hardest part for me was that my second ex said he wanted to sleep around with other women. The confidence I had gained being in what I thought was a loving relationship was instantly shattered hearing that as it made me feel like I'm clearly so flawed in a way that no one will ever truly accept me. Therapy has been helping me see that it's much more his problem than mine (he had cheated on me early on in the relationship, but I stupidly stayed), and that's been helping.

Still, I know I am still working on truly accepting who I am. It's just hard when you've had no one but yourself to build up any confidence, and the world can be cruel.

When I was going through a deep depressive episode last year, a friend told me “it’s impossible to believe your worth when all evidence up to now suggests otherwise.” It’s not happy advice, but it really grounded me in what I was experiencing. That I wasn’t insane for feeling the way I did.

I’m sorry for what you’re going through. If it’s any consolation, the fact that you’re willing to talk to strangers about it suggests you’re well on your way to figuring this out. Thanks for answering so openly

Thank you, I quite like that advice. I'm working on being more positive about myself, and I'm hoping that by sharing my experience others will be more aware of intersex conditions. I can't change my past, but I can define my own future.

Nahhhh dont worry. People can be real assholes and it almost ALWAYS Is about them and not you.

One day you will find yourself in something good and the rest of us will be one nice person short in our dating pool haha

Thank you, I hope so. Its just hard when some people can't look past the condition... Even though they were fine dating you up until you tell them. Then suddenly you're broken in their eyes. I always tell people right away just to get it out the way.

Did your parents come to terms with you having Androgen Insensitivity Syndrome? If so how did it change their prior notions?

My parents knew my entire life that I had the condition, they just didn't tell me until I was 14. Honestly, it really caused a rift in our relationship. They would refuse to tell me things like why I couldn't have children, or why I wasn't having periods, insisting that it was simply because "God made you that way." After they told me, so many things I had questioned were suddenly clear, but they insisted that I should never tell anyone as they would judge me.

From my perspective, they've always viewed me as a bit of a disappointment - a little broken. I think they were glad I had two normal siblings to compensate for my failure to have good genetics. In other ways, I think they blamed themselves.

Different isn't broken. You are fine the way you are.

I hope that helping others to understand your condition brings you some comfort. It must be very hard to process all of that.

I'm 28 now, and that appointment at the therapist's office when they told me is still crystal clear in my mind. It's taken years of self-healing to begin to unravel the trauma from my teenage years. Some highlights:

1. Seeing my dad cry for only the second time in my life when he told me about having AIS. I felt so torn up seeing him weeping.
2. Asking a priest if it would be okay to marry someone. Being told no as I'd be "gay either way" and that I should devote my life to God.
3. Being told that I'm doomed to go to hell by a different priest.
4. Told the first person I ever went on a date with about my condition. He called me a liar and threw a drink in my face.
5. Discovering a letter my mom wrote to an online support group in a book about my condition. It was weird opening up the Amazon book preview and literally reading about my own life.
6. Having my first boyfriend use the condition against me to keep me insecure. He kept telling me that no one would ever love me, but him, and that I should be grateful he's even willing to deal with me.

Being told no as I'd be "gay either way" and that I should devote my life to God.

I'm sorry for laughing, but the insanity of that statement is too absurd for me not to. Not ridiculing you, just the stupidity of the priest.

"Gay either way"... yeesh.

That makes me now laugh too. Essentially I was told if I date a woman, as I look like a woman, I'm gay. If I date a man, my chromosomes make me gay.

I grew up in an evangelical setting. Learned about AIS in med school, found it fascinating, and I remember thinking to myself, “boy this would be a nightmare to live with in an evangelical setting.” Sad to see I wasn’t wrong in that assumption.

Sorry that people who are supposed to live out God’s love used it to other and shame you =(

Yeah I can't say it was fun... Interesting, but not fun. Glad to be out of that environment.

wait wait - but what about the part where God made you this way?

Did any of these religious people appreciate that God made you this way? Because I mean technically if you are going to go that route he doesn't make mistakes right? So you should be at least approved by God or something.

Well according to one priest, God made me this way as a trial to show my love to him. The idea was that essentially this was my cross to bear in life, and I had to show true devotion to God by remaining single and being devout. Failure to adhere to that path would lead to my damnation. So no sex, relationships, or marriage for me.

I wish I could hug 14 year old me.

Schrodinger's gay. You did it. You're a living philosophical paradox! A living legend!

Hahahaha. I love that idea. Schrodinger's gay... 😂

A priest telling you you were doomed to hell because of the way you were born? The amount of hate and evil some of these believers bestow on their “god” is just incredible. If their god is creating people that are born to go to hell there doesn’t seem to be a need for a satan, because that is one evil god.

Yeah... I know... I went to the Church first as I had been brought up believing that they knew all the answers. I will say some priests were better than others, but the few that weren't really stood out. Especially when you're 14 and being told you're going to hell... well... it isn't a nice feeling, to say the least.

and that I should devote my life to God

"God made you this way. You should lock yourself away and thank him for it until you inevitably go to hell for being the way he made you." I hate humans sometimes.

Having my first boyfriend use the condition against me to keep me insecure.

If you haven't already, try to get some professional counselling as soon as you're able. I waited decades longer than I should have to work on the damage that was done to me at that age.

Also be aware that many - probably most - therapists will not be well-equipped to help you. I live in a conservative city and of the dozen or so therapists I've looked at most advertise "Christian family values" and only one mentions LGBT issues at all. They're used to dealing with family conflict and maybe depression, not gender identity and such.

My first therapist was worthless. She could listen, but she had no advice or feedback to give a bisexual man. I found another through the local pride center and it made a huge difference. He was based an hour away at the county seat but made the trip up twice a week to do sessions at the satellite office. The rates were cheaper because the organization is subsidized by some wealthy donors and the guy was way more qualified (PsyD in clinical psychology vs LMFT).

And don't ever feel like counselling is something you need just to fix something that's broken, any more than you'd see a personal trainer solely for rehab.

I'm in therapy right now to help deal with a lot of my issues. The lockdowns giving me more time to think about my past coupled with a horrific breakup (I haven't even shared half of the details here) made me go...yeah, I need some help. I keep going though!

You have definitely had more than your share of assholes in your life. Why the UK?

Just where I got a job opportunity to move to at the time, and I ended up staying much longer than I expected. Now it's home cause I've been here for most of my adult working life.

Wait so you're like...a lady but you have none of the drawbacks, but also none of the perks?

Damn that is confusing but also... You're like...so cool. My girlfriend would kill to trade with you. No periods, no kids. Exactly what she wants.

Understand it's very rough for you though, and for that I'm sorry. But (only if this helps), from some people's perspective you are basically superhuman and it's really cool!

Religion is basically a tool used to tell people if they aren't exactly how others want them to be, they are inherently wrong and should correct it.

The reality is, you're just a super unique meat popsicle, worthy of love and understanding and maybe even a little more than any other meat popsicle because you're UNIQUE. You're like, a kickass evolutionary possibility! You've ADVANCED our species, and for that a genetic therapy focus cellular biology major like me will always think "Fuck yeah, there are some really cool humans out there showing that we're not just all the same thing. We change, we adapt, we grow in ways that are always new and interesting!"

I hope this doesn't sound like I am making light of any of your struggles. Just want you to know, when things are dark, there's always someone out here cheering you on. Loving you for the beauty and delight you represent to the human race.

Hahaha - kind of, I suppose? :)

I like the idea of being a superhero, though I would have preferred something like teleportation. Maybe one day someone will evolve with that power!

Thanks for your support!

I keep reading your name as "I am Axy Woman" (catchphrase!) and picturing some She-Ra type axe-wielding adventure hero. You know, if you're looking for a superhero theme...?

I'm really enjoying reading your posts and experiences, and thank you for your honesty and openness. You sound super cool, and I wish you all the best!

New D&D character created! Thanks! 😊

So you are female because that's the default or because your body could only respond to the female hormones?

Essentially my body is unable to respond to male hormones, so I sort of defaulted to female. When I was born, the doctors said I could be raised either way by my parents, but told them that it's much harder "to build a pole than a hole." They decided that since I didn't have a penis, just an enlarged clitoris, it would be easier to raise me female. My body also can't respond to male hormones - so the choice was fairly obvious. I never felt anything but female.

How did they know at birth that you had the condition?

Enlarged clitoris. I had surgery when I was a baby to make it smaller.

At what age do you think you would have liked to have been told about your condition? What do you feel would have been the best way to tell you?

And from your other comments, I am sorry for the reactions/actions of your family, religious figures, and partners. Just know that there are people out there that simply see you as a person and I hope you have been able to find them

I think getting information slowly may have helped, and perhaps just as soon as I started asking questions - around age 12. Maybe even earlier when they had "the talk" with all of us at school, and I came home so excited to show my mom the new period pads they had given us. She just took them from me and said I wouldn't need them, I'll save them for your sister. I didn't understand why then, but it was frustrating to not have any answers.

does your vagina look normal and self lubricate?

Look normal yes, self-lubricate sort of. I usually need lube to have sex painlessly, but it can happen without. Takes a lot of foreplay.

I should also say, my vagina leads nowhere. It's just a pouch essentially. So externally you wouldn't notice, but internally there is an end to it.

Is that much different to the end of a typical xx vagina where it meets the cervical wall?

Gotta be honest my first though was same lol

I wouldn't think so...biggest difference is just that I can't get pregnant. There's nowhere for the sperm to go.

My brother dated a girl when he was in school who he told me had a vagina but it didn't lead anywhere and she couldn't get pregnant as there was nothing else there. I always wondered what condition she might have actually had and it sounds to me as if this was most likely it.

I met her a hand full of times and for all intent and purposes she appeared to be a normal looking girl like you say you do as well.

Thank you for this AmA it's been truly informative.

It very well may be!

Couple questions. Do you have testes? Did your body develop with eggs in utero or does your body produce sperm? Or neither?

I had testes, but they were undescended and removed as a child. No ovaries, no uterus, no sperm. Completely infertile.

Do you have a uterus even though the vagina doesn’t lead anywhere?

No uterus. Just a vagina, clitoris, and that's it.

Do guys ever notice that it feels different from a normal vagina, minus the amount of lube that's required?

Only 1 guy has ever had sex with me, and he said it felt normal? I mean, he was with me for almost six years, so I guess it couldn't have been that bad considering we had sex at least once a week, but frequently more often.

Okay that raises some questions. Hope it doesn't sound too weird, I'm just really curious.

Do you have to get the semen out yourself? How deep does it go?

Most of it kind of just comes out I guess... I just kind of wash the area after sex in the shower. My vagina was roughly the length of my ex's penis... but I'm not sure how long that was as I never bothered to measure. Essentially I used dilators to make the vagina big enough for him to initially enter, then his penis just kind of stretched it out more. Sex was less painful the more often we had sex, and more painful if we didn't for a while like when living apart.

Thanks for giving so many elaborate and private answers here! Huge respect.

How do you handle friendships? Do some of your friends know of your condition?

If they know, how far do they accept you as a woman? E.g. in open showers at the swimming pool or in a sauna. Do you sometimes feel a bit excluded or distant to other women? Do you feel the ones who know behave more reserved around you in these situations?

Friendships have been tricky for me due to not really socialising with anyone from the ages of 14-20 other than online. I had such a negative view of myself, that I figured no one would want to be friends with a freak who is going to hell. I also ended up being groomed by a guy when I was 16 (he was 25 at the time - my first ex) who made it out that even by even being my friend he was essentially doing charity work. When we met in person for the first time, he sexually assaulted me (what he did wasn't technically classed as rape in the UK) and that pushed me further into depression.

I have had some friends over the years, and I have told some of them. A few have been great about it, others weird. In general, I look feminine enough no one ever bats an eyelid if I go to a public restroom or use the women's changing room. I do though feel as though I can't quite relate to all feminine experiences.

If it makes any difference, I would totally be your friend. Lmk if you ever want to talk. I'm a woman but present pretty androgynously (and sometimes very masculine), and I have some church trauma due to how I was treated for my gender expression and sexuality.

I also worked in domestic violence and sexual assault. I'd strongly encourage getting counseling if you can afford it, or at least talk through it with a trusted friend. What you went through is horrible and you deserved/deserve better. I'd be happy to give you resources or just listen if you need anything.

Thank you so much. Greatly appreciate the support. hugs

This is fascinating to me, thank you for being open to questions!!

Have you done a 23andme and if so, did you show a haplogroup for both X and Y chromosomes?

I'ver never done it. My sister did though, and apparently we have more Neanderthal in our DNA than the normal person.

What are your thoughts on the "define the word woman" question during Justice Ketanji Brown-Jackson's confirmation hearing and her response?

I find all of these types of questions to be so interesting today about gender identity. What actually makes someone a man or a woman is, largely, as sociological as it is biological. I think it really gets into that sex vs. gender question, and I understand where her inability to provide a real response comes from.

I thought I was a woman growing up my whole life - what actually makes me feel like a woman is hard to define. More feminine features? Breasts? The sound of my voice? The internal voice in my head? How others define me? Yet I don't menstruate. I can't have children. So what really makes a woman?

This then leads me to question does it matter at all, or are we just trying to fit squares into circles when ultimately is it of any real concern?

I've had a hysterectomy, no kids. I'm still a woman. Don't let anyone tell you who you're supposed to be.

Exactly! You're a woman, I'm a woman, society just doesn't know how to define women. hugs

This then leads me to question does it matter at all, or are we just trying to fit squares into circles when ultimately is it of any real concern?

This is something I've been struggling with myself. Is it important for me to identify with a particular gender identity, or am I just applying some social construct that society expects me to place myself in?

Personally I would say as a whole, society places a lot of value on things that are actually pointless. Who cares how I personally identify ... I'm just me. My experiences are unique from yours which are unique from everyone else. No one has the same experiences, so why are we trying to label everyone? Just be you.

You've kind of been thrown into what a lot of trans people go through.

I'm wondering, do you plan to keep living as a woman?

Sometimes (although it obviously isn't true, I'm just a boring old XY trans woman, and i don't mean to hijack your legitimate experience just to tell myself a comfortable lie) i like to think of myself as a woman who had a lifelong hormone imbalance that caused me to appear male so that's how I was raised and lived my life. Having figured it out at 30, I'm now combatting it and hormonally transitioning to live as a woman.

Yes, I've always viewed myself as a woman and never plan to not live as one. Unless I told you, you probably wouldn't be able to guess I was anything but a woman.

Reading through your responses makes me feel weirdly connected to you as a trans woman. A lot of the experiences you are describing resemble a lot of my own, including the types of questions we ask ourselves. Our biology is quite similar (I'm post op), and I think we even take the same pill.

How do you think of yourself with regards to your gender identity? Do you identify as cis, or something else entirely?

I view myself as an intersex woman I suppose. I find the other labels hard to define me as I wouldn't say I'm truly cis. It's tough as I've struggled a lot with my identity.

I'm so sorry that it's been this rough on you. In terms of a question though, it's more a clinical one. Does your body produce/maintain hormones within typical ranges? If not, has it affected how you grew?

I've been on hormone medication since I was probably around 8/9? I just didn't know what it was at the time, but my body needs the additional hormone support to prevent other negative issues such as osteoporosis.

In terms of my growth, I'm shorter than my brother but taller than my sister. My brother is about my dad's height and my sister is my mom's. I also have smaller breasts than my sister.

Do you think you would have breasts if you weren't on hormone treatment? I assume your body doesn't naturally produce estrogen, but that's just a wild guess. You say you appear female, but does your body show any other signs of being male, like growing a beard or something similar?

No masculine signs - no beard, no penis, no extra muscular strength.

I think I may have developed small breasts, but the hormones certainly helped move the development along.

Thank you for doing this AMA and sharing such intimate and personal details of your life. I'm sorry that things have been so awful for you. This has really brought to my attention how little we know about intersex people and their experiences, even in supposedly inclusive spaces like the LGBT/queer community.

I have a bunch of questions:

How are you doing these days? How do you feel about the community/town you live in now? What do you do for work? What things do you find most fulfilling in your life at the moment? How do you think the general public can become better allies and friends to intersex people?

1. Life is tricky. I have good days and bad days, but I'm in therapy.
2. I love living in London - so much more inclusive. :)
3. I'm a teacher.
4. Probably my job at the moment is the most fulfilling thing. My personal life needs a lot of work to rebuild connections after my breakup, but I've always been great at my job.
5. Education is a major first step. Simply helping others become more aware, listening to intersex stories, and allowing intersex individuals to have their own spaces to tell their tales is important. Too often intersex just gets lumped in or ignored with other LGBT issues. Those issues are all important, and each deserve to be listened to individually.

Do you have a cervix or does your vagina stop before that?

No cervix. It's just kind of a vagina pouch I suppose. As a teen, it was so small I couldn't even fit my pinky into it. I used dilators over the years to stretch it out - was extremely painful. A lot of that also came from the fact that you need to relax to use the dilators well, and I just couldn't as I would have flashbacks to people telling me that sex is a sin, I'm going to hell, etc. I would then get frustrated that I wasn't relaxing and would try to jam the dilators into me, causing more pain and bleeding. I would typically end up crying and in pain by the time each dilation session was complete.

You did awesome, my wife has been trying dialators for a while now with only a tiny amount of success. Don't be afraid to big up your achievements you sound pretty courageous and brave to me!

Thank you, and I hope that your wife finds success. Does she have AIS or a different condition?

No condition just a lot of self imposed guilt, shame etc because she grew up in a deeply religious and controlling household. "Diagnosed" as Vaginismus and doctors say it's psychological so we are hopeful

Oh yes, I'm familiar. I hope the dilators help - the psychological aspect can be hell, but keep trying. Do anything that helps you relax. hugs

I feel so ignorant for asking this question: pleasure during sex, is that impaired? That is, orgasms?

I think it might be slightly? I have never seemed to have the type of orgasms described in media, but I've also only ever slept with one person so I'm not very experienced.

As a bit of a side track, how/where did you get dilators and how do these sessions work? Sorry if this is a topic you wish to avoid, don't answer if you dont want!

Im asking because my doctor recommended them to me because I have a smaller than normal vagina but she didn't give me further direction.

I got them from my doctor originally then ordered new ones off Amazon when I moved abroad. The sessions I did were really bad initially - I wouldnt relax and got frustrated at my limited progress. Just tried jamming them in to a lot of pain and tears.

Eventually I found that having a bath first, using lube, and using them gently on myself while relaxing was the best way forward. If you masturbate, it also helps you relax more. Start with the smallest and slowly build your way up.

Has anyone said whether health screening for things like cancer with mammograms should be the same or for you or different compared to other women? That is, I don't know if people with AIS have different guidelines for health screening.

How long have you been advised that you should/will take estrogen for? That is, would you stop estrogen around 50 years old since that is when many women become menopausal, or would you continue indefinitely?

I think I'm on estrogen my whole life, though the dosage may vary. As for screenings, I still should get them, but I'm not at as much of a risk for certain ones like XX women.

I think there was an episode of dr House with that syndrome. Have you seen it ?

Yes, I have seen that episode and I hate it. It's the one where the girl is a supermodel. I remember seeing that as a teenager, going that's me, and then feeling horrendous about how House refers to the patient. I know the show is all about him being an ass, but I can't stand that episode to this day. However, it did help some people learn about the condition I suppose. :)

I hate it, too. House has so many problematic moments, and that is pretty high on the list. I did see a YouTube video where the urologist was like, "that's not acceptable" and she talked about the condition in more modern terms.

I don't think the episode could be made the same way today, that's for sure. Unfortunately, that one episode was the only representation I had of my condition growing up.

Apologies if you have already had this question, but have you read the book Middlesex by Jefferey Eugenides? It was pretty popular in the early 2000s. If so, do you feel it accurately represented your condition?

Edited to add: as some other commenters have noted, this book is actually about someone with a different condition (5-alpha-reductase deficiency). However, I would still recommend to anyone looking for a deeper understanding of intersexuality and gender.

I haven't read that book, but I'll take a look at it. Thank you!

The syndrome was also featured in an episode of "Call the Midwife." I don't follow the series but did catch part of that episode.

https://www.google.com/amp/s/metro.co.uk/2019/02/10/call-the-midwife-tackles-intersex-discovery-as-bride-to-be-discovers-she-has-testes-but-no-womb-8510832/amp/

I've not seen that! Will have to watch. Thank you. :)

I don't think the way the character House responded in any given situation was ever intended to be the a model of how someone should respond. His character was written to be jarring and for most of any episode he was wrong. Episodes usually ended up with him being right about the medical problem, still not right about how things were handled and very wrong about the human interaction. Thinking the AIS episode was pretty good from the point of view of introducing people to the condition and providing a clear House-example of how not to handle the human interaction.

Yes, but imagine this is the ONLY piece of media you ever see about your condition, and one of the only pieces of media non intersex people will see about them and color their interpretation of intersex people. It sucks

Yup! I would love there to be more representation of intersex individuals today. I remember watching Buffy the Vampire Slayer (in secret as a teen cause Buffy wasn't approved by the Church), and seeing Willow and Tara have a relationship opened my eyes to the idea that the LGBT community isn't this evil thing that everyone kept preaching. That alone helped me explore my sexuality more.

Like what church is this? Just curious.

When you talked about priests, I assumed you were Catholic or Orthodox, but while I am sure the Catholic church is not keen on teen dramas, no one ever told me not to watch Buffy or any other show. They never even talked about it.

Your experience just sounds horrifyingly from your parents to the priests involved. I know some priests who aren't the nicest people, but you must have gotten stuck with the leftover staff from the Spanish Inquisition.

Yeah, I spoke with both priests and pastors as I went through a bit of a religious breakdown and asked people from different faiths. The one was from a local Catholic church, and the other was a non-denominational Christian church that essentially followed a Southern Baptist ideology. I really should have been more specific.

As for Buffy, that was more my parents. hahaha There were so many things banned in our household.

Have you ever had been on dates and/ or had sex with women? If so, do you experience the same sort of disgust that you referenced in a previous post (guy threw a cup of liquid at you upon finding out)?

I've never slept with a woman, but I've been on dates with women. Honestly, they've generally all been much supportive than men who seem to be more weirded out about my condition. I think part of that might be sociological where men feel more pressure to assert masculine gender roles, and dating a "man" (cause you know... XY chromosomes) makes them feel like they aren't upholding that role. Not sure though - just my guess.

Oh of course not - House was always an ass. I think it was more that when I viewed the episode I was struggling so much with my own identity, and seeing his response on TV was really jarring. I am grateful that the episode introduced people to the condition, but I still can't watch it today without feeling like I'm a teenager again.

How do you feel about non-consensual genital surgery performed on babies? It seems like the removal of your gonads was something you appreciated but the surgery on your clitoris was not. In California there was legislation introduced that wanted to ban these surgeries. Not sure if it passed.

I would rather they waited for both surgeries to be honest. There was, according to the doctors, a potential risk of cancer, but so little was known at the time. A lot of the advice was very poor, and I really think I would have preferred to be given a choice about my body.

If you had that choice , what would you choose ?

Difficult to say now as I'm not sure how my body would have naturally responded had I been allowed to develop without surgeries. I just have to sort of accept who I am now.

Thanks so much for posting.

Like a lot of people, I learned about this condition because of that one House episode. Sucks that's probably what this condition is known from. I ended up researching it a bit but mayo clinic pages and wikipedia don't exactly paint a picture of what living with something is like.

Have you ever met another person with the same condition?

How many times a day do you think about it? Is this your everything, or something that just pops into your head from time to time?

I haven't met anyone with the same condition in real life that I'm aware of, other than online. However, I may have and just didn't know.

I usually think about it at least once a day. Way more since I became single again as I have to fight negative thinking about why my partner of six years left me. I keep blaming myself for not being enough of a woman - whatever that means.

What age were you when you started Estradiol? Do you remember other medications from when you were younger?

No other medications, I just remember the way it was administered changed. It used to be this horrid, red liquid I had to take every day, and then eventually it became a pill. I much prefer the pill.

How are the pills in terms of levels throughout the day? I personally used to be on a topical gel and could feel the levels peak a few hours after applying it every day, then hit a slump in the evenings. I've since moved to patches and everything feels a lot more stable, which is nice, would recommend.

Also, hugs, and I hope the EHRC rubbish doesn't end up affecting you.

The pills are fine. I don't really notice them. I've been on the same dosage for years, so I think my body is just completely normalised to them. The biggest change from the US to the UK has been the cost of the medication! Massive discount over here.

Massive discount Much less medical profiteering over here.

FTFY.

The NHS is truly undervalued.

It's fantastic. I've had no complaints.

I've learned a lot from what you are sharing. I think this is one of the few AMAs I've read almost all of. Thank you.

1. You mentioned having a tense relationship with your parents. How is your relationship with your siblings and how did they find out? Did your parents tell them or did you? How did they respond to you after?
   
2. You mentioned PA. Pats or Genos?

1. I told both of my siblings and they reacted differently. My brother is more religious and wanted to know if this meant I was becoming a lesbian. My sister I told as an adult and she's been more supportive, but we don't really talk about it much. We're working on improving our relationship.
2. Unfortunately I can't answer - vegetarian so my opinion is useless.

Thanks for reading! Appreciate the support.

My best friend in high school had this. Do you present as male or female now? Do you find yourself attracted to feminine or masculine people?

I present as female, and I'm attracted to both genders. Hopefully one day I can find someone who will also find me attractive as I am!

Are you apart of any communities consisting primarily of adults with an intersex condition?

Thanks for the AMA. I really enjoyed reading the questions and responses. I am father to a boy who was born with an imperforate anus. He required surgery immediately after birth and several others later to create a recital opening. He has a routine now where he has decent bowl control, but he will always requires a catheter to use the pee, and enemas for pooping. There is also a risk that he will be unable to have children, and at best his birth defect has his body ejaculating semen into his bladder, so at the least he will need to extract it and use artificial insemination to have children.

As his dad, we are always open with him about his health. We can’t explain why he was born differently, but we do not chastise him for needing different care. He gets answers for any of his questions, and we explain that most people have something different about their bodies. His difference is just more unique. Had I been your dad, I would’ve done the same. Christians are quick to Psalm 139:13 but often fail to unconditionally love those born different.

I am sorry that your circumstances did not leave you with the same support. Being intersex is a challenge by itself, but feeling demonized, embarrassed, and isolated is only an unnecessary burden of pain. My message to you is to remember that you are unique and your health, both physically and mentally, is no less important. Just like my son, my wish for you is to find love and happiness in life, and to be surrounded by people who want the same. Don’t let the scars of your past relationships let you believe you deserve any less. God bless.

I'm sorry to hear about your son's challenges, but it sounds like he has a wonderful and supportive father to help him. That makes such a difference to a child, and you should be proud of how you're raising him. Thank you for your support.

Have you found much support in queer spaces?
I assume you're straight, but the lgbtqi acronym does cover intersex, and I've always wondered if queer spaces were of much help for many intersex people.

I've found some support, but it's a little awkward. I'd actually identify as bisexual, and I would say that in terms of appearance I'm generally more attracted to women. However, I find it more difficult to date women as there are just more straight men. People say I'm quite attractive, but I don't know how to judge myself.

Growing up, the LGBT community was my closest ally and that really made it hard growing up in a religious household. I would hear all the time about how THE GAYS are ruining society, if an LGBT person was on TV my parents would yell to turn it off, and my Church was very anti-LGBT. On the other hand, I dislike how intersex is sometimes confused with trans issues as they are quite different. Usually, this happens from people who are ignorant but with good intentions trying to show support. I have to sometimes explain to those people that they aren't the same.

I'd actually identify as bisexual, and I would say that in terms of appearance I'm generally more attracted to women. However, I find it more difficult to date women as there are just more straight men.

Trans issues, intersex issues, and sexual orientation aren't all the same thing but I think there's a lot more complexity to all of it than most people recognize, and more variety in how it manifests than we have labels for.

I'm male and I identify as bisexual, but I know my experience doesn't always match up with other bisexual or gay guys. Like when I hit puberty I wasn't clearly lusting over guys, but I knew how I wanted to be seen and treated by a partner (and what itches I needed scratched) and was aware of physical characteristics that I was attracted to, but I'd been bullied so much for so long by other boys that I had a complete aversion to guys as a whole.

I remember worrying about getting an erection at the sight of naked guys in the junior high locker room but I never stopped to think that the average straight guy probably didn't have that reaction. And I didn't quite recognize that most of the girls I was attracted to were the tomboys. The attraction to male characteristics were there, but I couldn't let myself be attracted to a particular guy because they were toxic and dangerous.

I'm almost 45 now and I still feel echoes of that. The only spontaneous same-sex hookup I've ever had happened after I'd (for totally unrelated reasons) taken an anti-anxiety drug. It's like my sexual orientation is the net sum of a bunch of different attractive and repulsive forces. Remove that fear-driven repulsion and I'm apparently able to jump into bed with a cute guy when normally it'd take a lot of trust building, no matter how hot he was.

It sounds like you've got your own complex set of forces at play. I hope you're able to shed some of those externally-imposed ones and figure out what is most authentically you.

That's what I'm trying to work on - finding the authentic me! I know who I am in some ways, but in others I'm very confused still.

You sound beautiful, and you define who you are, not an antiquated belief system specifically designed to control people. Your parents are damaged by their religion and that has caused you trauma in turn. But they are all wrong, you are right however you decide what right is for you. If you’re still in a religious area, get the fuck out, let them rot, they don’t deserve you.

I ended up moving away entirely from the US to the UK to get a fresh start in life. It's been nice removing myself from the old toxic environment.

How do you feel that people often group transgender and intersex people together?

Not a huge fan as the issues are different, and I would prefer that each was given their own platform/attention.

Hi, I'm an expat too... US>PL, so slightly unrelated question.

Are you happy being away from the US and or family? Do you miss anything?

I hope all is well.

I moved from the US seven years ago, and I haven't gone back once. I don't miss it, but my experiences there were really hurtful, and I was never made to feel like I belong. At many times, I was made to feel like I don't even deserve to live.

I do miss the US landscapes at times, but that's about it.

Well, I'm happy you're here on Earth internet stranger.

oh, one last question, have you kept your American accent?

A good friend who I grew up with in the US moved to the UK for gradschool, 2 years, and magically permanently lost his US accent, he now lives in Germany and maintains a British accent....

I still have an American accent, but my sister says it has changed slightly. To the British I sound American, to the Americans, I sound ever so slightly British at times.

Hiw do you feel about your parents? Do you hate them or feel some resentment towards them? As i understand they are hard religious, so youth must have been hard. I'm an estranged daughter and I haven't talked to my dad for years now. Thank you for doing this ama.

We're not close my parents and I. I find it to be such a challenge though as I recognise that in some ways they were trying to protect me, but in others they caused a lot of harm. It's tough because they did care about me, but they also were some of the main points of pain in my life. What I find really challenging is the way they would hide information and avoid discussing my medical condition or even learning more about it. Yet, I also feel some sympathy as they also lacked a support system. This is part of the reason I'm doing this AMA to raise awareness.

I understand. Mines disowned me. My mom ocassionally gives me a call. I can't help feeling life would have been better with their support and help. Do you feel your life would have been better if they would have been more willing to learn and teach you about your condition instead of hiding it?

Yes, I think having no friends support you is hard. Having no family? That's even more rough. You end up feeling so isolated when your own flesh and blood seems to feel ashamed of you.

My comment got removed for not being a question so I'm rephrasing-

Thank you so much for this AMA, you're so patient and considerate and kind in your answers. I'm sorry your communities let you down so badly and I'm glad you're here.

Question: how did you get to be so dang cool?

Hahaha, thanks! I think when you've been through a lot in life you have kind of two major choices. You can either become a shitty person like everyone is treating you, or you can choose to rise above how others define you. I really don't want to be the person causing others pain, cause I know how it feels to be in that situation where others treat you like garbage. A small bit of kindness can help someone so much - so be kind. Am I angry about certain things in the past? Sure... but it won't change my situation being angry or cruel to others.

So you look like a woman, right? Do you feel like a woman or does a part of you feel like a man and like you should have a penis?

I always thought I was a woman, and never felt like a man. I spent 14 years believing I was a normal girl, and then had quite a big shock to my system. I've never felt like I should have a penis, but I have had many insecurities about whether or not I look too masculine.

Since then, anyone I've ever told has been shocked to learn about my condition. They said they would never have guessed it looking at me - that I appear, act, and sound like a woman. However, I've also had insecurities that maybe they're just saying that to make me feel better. Who knows! :)

I’m confused. You ‘should’ve been born male’ yet they’re giving you estradiol. How do you identify yourself?

I view myself as a woman. The estradiol is because they removed my undescended testes when I was a baby, so I can't produce hormones on my own. Without that medicine, I would be prone to other medical conditions such as osteoporosis. My body is insensitive to male hormones.

Fellow asthmatic here! How well controlled is it and do you take any daily medication for it? Sometimes I hate needing to maintain it and the thought that it will be here for the rest of my life. Do you have any other feelings about your self or body from having asthma?

Thanks also for doing this! It's been great and is very generous of you!

My asthma is quite controlled now - I only get triggered occasionally. I used to take a lot more medication for it, but now I just have an emergency inhaler.

Are you aware that complete strangers care about your well being?

This is weird to think about honestly. I didn't expect so many people to care or send messages of support. It's overwhelming, but in a really positive way. 😊

I'm so sorry your upbringing was so unnecessarily difficult. Are you doing OK now? What is your relationship now with the community you grew up in? What is your relationship with your religion?

I'm in therapy right now, and it's helping. After so many negative experiences, I decided it was time to step back and reevaluate my relationship with myself. I don't have any relationship with my old community. I moved away, and I haven't looked back. I worked full time in university to be able to avoid going back home, and then I moved abroad when I got a job opportunity in the UK.

My relationship with religion is really broken. I understand why some people like religion, but I don't care for it at all. In some ways, I do miss the community aspect that religion seemed to offer, but after all the mental trauma I'm sort of done with religion. I pretty much live by the idea that as long as no one is trying to impose their beliefs on me, I'm cool with them living their life. I also don't think religion is a good substitute for critical thinking.

I actually just did an assignment about how different states treat intersex birth certificate’s/IDs. What state are you in and do you know if your state allows you to be identified as intersex?

I moved from the US about 7 years ago, so I'm not really sure anymore. I think PA is working on updating their laws, but isn't there yet.

It was always so important to me, as a parent, to encourage my son and daughter to be "you". Just be "you" and that's more than good enough for me. It's the best for me. I want them to always feel good enough, just as they are. And they both are wonderful human beings, warts and all. They're about your age. I still tell them that they are good people and this makes me more proud of them than anything.

I'd be very proud of you.

Do you think that this attitude of parental support for "you" might have made a big difference for you, or did you find that anxiety for what general society might think, was the greatest influence? I'm not expressing myself well ... I think I'm wondering how much supportive parents might have made up for social anxieties.

I think one's parents play such a massive role in development that it's important to try to get it right. That isn't to say mistakes can't or won't be made, but in my opinion I think the best thing a parent can do is make their child feel like they'll always have their support. Do something stupid? We may regret your choice, but will help you pick up the pieces. Do something great? That's awesome - we're so proud. Trying something new? Go for it!

I never had that, and it sucks. I have so much more anxiety from knowing that if I fall I'm on my own. If I disappoint, I'm on my own. Even if I'm successful, I celebrate on my own anymore. That's tough, and it's not the kind of relationship you want with a child.

I am so sorry that you didn't have this in your life.

I very honestly believe that your parents are very much missing out on the joy of having you in their lives. They have lost so much. I've read your answers and you are smart, kind, have humor, and a courage that I doubt I could rise to myself. If you are a teacher of children, you are sharing yourself in a most wonderful way, much as a good Mom would. If you teach adults, it is helping them become better people, and that is incredibly noble. I think your exes are morons, and that you will, when you least expect it, stumble upon the person who treasures you for you, and you will feel safe.

And I send my very warmest and tightest hugs. As many as you want.

Wow thank you. This response brought tears to my eyes. Thank you so much.

Can you grow facial hair?

No - just the normal amount women have. Funny story, I once had a giggle fit at the doctor's office as he told me I also won't be able to grow much pubic hair. He offered me cream to help me grow more pubic hair, and I couldn't stop laughing at the idea of putting cream on my pubic area to grow more hair. Why would I want more hair there, I kept asking? Don't women like to shave that off? For some reason, this was the funniest thing I had heard and wouldn't stop giggling for about 20 minutes.

That’s fascinating. Both sexes grow pubic hair, I’m curious why that’s a side effect of your situation

I don't produce high enough levels of hormones to make a lot of pubic hair. I have some naturally, but not the levels some women get.

If you could date another intersex person (assuming you like each other), would you rather do that? I suppose that's like asking a bi/pan person their preference and it depends more on the person than their genital configuration, but do you think it would make the relationship easier? How do you feel about being lumped into the + part of LGBTAQIA? Or do you not feel part of that community since you're basically a straight woman?

I have thought about that before, but really the likelihood is quite slim. I will admit at one point when I was around 15 the one other girl I found in a Facebook support group with my condition and I decided that we should be a couple as "no one else will love us." It didn't work out for many reasons, one of which being we had nothing else in common.

I do consider myself bisexual, but I don't really feel like I'm part of the LGBT community for my intersex condition. Even in that community, conditions like mine are sort of ignored at the moment.

I think in some ways it would help to date someone like me to not feel like I'm a burden on the other person. Both of my ex-boyfriends made me feel like they were doing me a favour by being with me. But that is also a matter of confidence that I'm working on. I've come to realise that I actually have a lot to offer as a person. Good job, I'm kind, I'm intelligent, I've been told I'm quite attractive, I have an awesome cat, and I enjoy quite a few hobbies like guitar, D&D, reading, and exercise.

Can we please see a picture of the awesome cat?

Sure! Cat Photos

Can you have an orgasum, and if so, what is it like?

Yes, and it's nice I suppose? I get the feeling I don't feel them as strongly as other people because others talk about orgasms as being amazing all the time. I think partly that is my anxiety when I do have sex as I find it difficult to relax at times with the self-judgement going on in my head. I've only ever slept with one person though, so perhaps if I eventually find a new partner I'll feel differently?

Thanks for being so awesome and showing up here to educate us all. We recently learnt that being born intersex, is as likely as being born with red hair. Is their a large intersex community that you know of and connect with?

I'm not connected with any particular intersex community. I have tried a few in the past, but at the time I wasn't really accepting enough of myself to properly connect with others. I found it stressful. Today, I would probably be in a much better place to connect with others.

I have no idea how this works , but how do you identify?

I identify as a woman. Intersex woman if really pushed.

Do you feel like a male or female? Like would you identify as your genetical gender or the way you lived and im guessing have been raised?

I feel female and always have. I was what people would class as a "tomboy" growing up, but masculine traits were just more valued in my household. Nowadays I just try to be me - whatever that means. I don't really like classing things as masculine or feminine anymore as I find the definitions to be weird.

Did you ever run into issues with your behavior and your parents? I'm not sure how to phrase this, but like, I am bi and closeted, and generally have a low level awareness of my actions and how they would be perceived, and if they would, ah, give the game away so to speak.

Obviously, bisexuality aside, your parents knew from the start that you were intersex, in such a manner that you both presented as and identified as a women, albeit with XY chromosomes. Did they ever push you towards traditionally masculine activities or feminine activities, or conversely get weirded out by you acting tomboyish growing up?

Oh yeah, they were very pushy towards me being feminine and I hated it at times. Like they tried to force me to do ballet, would make me wear dresses when I hated them at the time, had me join all these "young ladies" Church groups, etc. I remember once, as an act of rebellion, wearing all black to a pink ladies Church gathering event. I just think I didn't like being told how to dress.

Funnily enough, as I grew older and started figuring out what I liked I gravitated towards more traditionally feminine things on my own.

do you have ovaries?

No ovaries. I had undescended testes when I was a baby, but they were surgically removed when I was a couple of days old.

What gender do you identify as ?

I have always felt female.

Have you had a hard with knowing you won’t have biological children? If it bothered you in the past, are you at peace with it now? For context, it’s been a challenge for me and I haven’t quite come to a place of acceptance about that myself.

It's hard sometimes knowing I can't have children. When I'm honest with myself, I would actually would love to have a child, but it's impossible biologically. Obviously there are other options like adoption, but it's such a difficult process. I figure I can be the coolest aunt ever though when my siblings have children.

I'm sorry you're still struggling with infertility, and I hope that you can find peace one day. It's tough. hugs

If you had been raised as a boy do you think you'd feel like a man or a woman? Is there a higher rate of transgenderism in intersex people?

Do you know what factors parents should consider when "choosing" which gender to raise their intersex baby? In your case it seems like your parents made a lucky guess (it's my understanding that they chose to raise you has a girl because it would be easier to make you look like a girl physically via surgery). Personally, without any knowledge of intersex(ism?) I think I would have chosen to raise someone with your condition as a boy since that's what your chromosomes are and in most cases a person's gender identity and chromosomes match - but I'd be wrong in your case.

I don't know (I mean, I really don't know statistically) if there is a higher rate of transgenderism in intersex people, but some people have definitely be raised the wrong gender. As for raising a child, I think for me it worked out raising me closer to the gender as I physically appeared, but I do wish I felt less pressure to conform to a certain gender role. Perhaps just don't put pressure on the child, and as they age let them decide how they wish to identify if needed?

Is cereal a soup?

If you don't eat it dry, I suppose it's a kind of soup?

IIRC internally you still have testes right?

They removed them when I was a baby.

I’m looking at your medical records and I cannot correlate how it references your dilemma. You claim to have XY chromosomes but you are also implying to have a vagina? Do you menstruate? Do you not have a penis and two testicles? Serious questions

XY Chromosomes

A Vagina that was partially formed, but I had to use dilators to make it usable as an adult.

No penis - I had testicles but they didn't descend and were removed as baby.

No menstruation.

I had to do some research to get a better idea of your ailment and I’m sorry you’ve been dealing with this your entire life. How does this affect your daily life?

Since I am curious, please permit me to ask, what gender do you find attractive? Do you masturbate and orgasm like any woman? I assume so since you have no penis

I actually find women more attractive, but I've mostly dated men. I do masturbate like a woman, but I'm not sure if my orgasms are as strong as other people's? I do find being drunk helps me relax, and that makes things feel better. ;) hahaha

You are wonderfully and fearfully made. We all are. God doesn't make mistakes, and you are perfect exactly the way you are.

People can be afraid of what they don't understand, which includes parents, priests, boyfriends, and anyone else, but that is a reflection of their understanding and compassion, not your worth.

How would you have preferred to have learned?

Edit, since people are taking this in a weird way. I think op is perfect the way she is. I think it's terrible that religion has been used to put her down and tell her that she is less than others or wrong. Her feelings and anger at the situation and at her family for treating her badly are valid.

It's bad luck to be born into this whole situation, but if God exists God isn't going to get mad because she chooses a partner, male or female. Gayness isn't a factor here, and her priests were wrong to make her feel bad about herself in this way.

As more frame of reference, I do believe in God but I'm not Christian. I was raised vaguely Christian and have a good understanding of what the Bible says and doesn't say, and I think her priests and family were blinded by fear of the unknown and used religion as the excuse to abuse her.

I think it would have been easier to learn about my condition in perhaps pieces over time or even just having an honest conversation when I first started asking questions. Being told for over a year that it's the way God made me, and getting no further information, was driving me insane. I knew there had to be some answer, but I couldn't figure out what it was. That was what caused me to suffer from depression for the first time, and ultimately drove my parents to tell me. I also think if they knew more about the condition it would have helped. Instead, I was given a large binder full of papers about AIS, but I was given no other information. It really stressed out my parents if I asked them questions, so eventually I just stopped.