A conversation with Sarah Corke
27 min. Recorded on 8 July 2020.
Sarah’s pronouns are she/her or they/them. She is intersex and identifies as non-binary. Find out what that means to Sarah in this episode.
We also talk about Androgen Insensitivity Syndrome, Hormone Replacement Therapy, gonadectomy surgery, Queer Britain, being different and getting attention, being queer and bisexual, Differences in Sexual Development or DSD, and Intersex Genital Mutilation.
“I think I’ve informed more doctors about this condition [Intersex] than they have informed me.”
TRANSCRIPT [click to expand]
Esther: Hello! What’s your name?
Sarah: Hello. Ok, I am Sarah and I am intersex and I identify as non-binary and I use she/her pronouns.
Esther: Ok, brilliant. What does it mean, intersex? Can you talk about that a little bit?
Sarah: Yes, intersex means that it is anybody who is born outside of the typical biological idea of male and female. So you have got a mix of sexual characteristics of those two sexes; that could be to do with body, like genitalia; or internal reproductive organs like uterus or testes; or two chromosomes or people being born with XXY chromosomes, instead of XX, or XY; or people would outwardly appear to be female, like myself, who actually have XY chromosomes which people typically associate with a person being male. Hormonal differences as well, so at a more subtle level, differences in people’s levels of certain hormones like oestrogen and testosterone. Personally, I was born outwardly female I have got XY chromosomes and I don’t have a uterus or ovaries but I did have undescended testes.
Esther: So when did you discover all that? Because obviously as you were growing up you wouldn’t have known, would you?
Sarah: No, I didn’t find out for definite what was going on with me until I was 19. I thought something about me was different from the age of about 13, just because puberty wasn’t happening when it was for everybody else around me, but I couldn’t pinpoint what that was. It was only when I didn’t start have any periods, like all the other girls were doing, that it came to light that there might be something different. I did see my GP about it and they had me get blood tests done, every six months, to check on hormone levels and he always told me that things were fine, that there was nothing to be concerned about. He thought my hormones were going in the right direction and I would have a period soon. Then, I think it was a year after him saying that, things hadn’t started and he said: oh perhaps you are just going to be one of those people who doesn’t have periods, which I thought was a bit weird in that he wouldn’t investigate any further. Then when I moved to Norwich for university I saw a different GP and she looked at some old blood test results and she didn’t think they were typical at all, because I had got very high testosterone levels, not what would be expected for a woman normally. Then after being examined by an endocrinologist, and then another endocrinologist at a specialist clinic in London, I was finally told that I was intersex and I had something called ‘Androgen Insensitivity Syndrome’ that means that although genetically you could say I was supposed to have been born male, my body just doesn’t react to testosterone at all, so I developed as female and I just didn’t have the internal organs to go along with it. That was a heck of a journey.
Esther: Yeah I bet it was! How old were you when you found all this out?
Sarah: I was 19. I had moved away to university, I was sort of striking out on my own and I was having to deal with finding out all of that.
Esther: Wow! That must have been a lot to handle, at that time especially.
Sarah: Yeah it was. But I have got supportive friends and family, so it was good in that regard.
Esther: That’s good.
Sarah: Who were around me to support me and, although a lot of people around me couldn’t understand exactly what I was going through, it was the moral support and the emotional support.
Esther: Did you ever connect with people who do understand? Do you know any other intersex people?
Sarah: Yes I have met a few intersex people over the years. As soon as I had got my diagnosis I joined a Facebook group for people with Androgen Insensitivity Syndrome and that is people all over the world in that group – I have only met a couple of them in person, but that felt really good to have people, even just online, to talk to and who were going through the same, or similar, situations. I found out more information, especially about hormone replacement therapy, that I didn’t just have to take oestrogen and testosterone was a viable option, because I had to have my testes removed because they said there was a small risk of cancer if they were left in. So I have to take hormone replacement therapy which was a big journey in itself but, to begin with, I was given oestrogen just as a default because I am female externally, but I didn’t get on very well with it, it played with my emotions greatly and I put on a lot of weight and things like that. It was only through contact with other people with Androgen Insensitivity that I found out that it was possible to be prescribed testosterone to take instead and it would do the same function, to protect my bones from getting osteoporosis and so the next time I saw my endocrinologist I asked if I could start on testosterone, because I had heard other people had taken it as well, and he just said: yeah, that’s fine.
Esther: Oh wow!
Sarah: So it had been great speaking with other intersex people.
Esther: Oh wow, I bet yeah, because it is not necessarily a subject that even your doctor would know enough about to really help you, is it?
Sarah: No. I think I have informed more doctors about this condition then they have informed me, because often they will see testosterone on my prescription list and ask: what is that for? And I will have to give an explanation about what it is, and why I have to take it, because most of them have never come across Androgen Insensitivity or any variation of intersex.
Esther: Ok, so I am just wondering about why was it necessary for you to look into hormone therapy at all? What if you hadn’t done that?
Sarah: It all started actually with my first appointment I had at the specialist clinic in London to find out if I was intersex, they advised me I needed to have a Gonadectomy to remove the internal testes as there was this small cancer risk. After I had that operation, because my body wouldn’t be producing any hormones on its own, I would need to take a hormone replacement to stop me getting osteoporosis. So I needed to protect my bones, it is similar to when women go through the menopause and then end up having to take hormone replacement therapy to prevent osteoporosis, it is very similar to that, because once women go through the menopause and their reproductive organs weren’t doing what they were then they are at a greater risk of osteoporosis, so it is similar to that.
Esther: Right, because, from a biological perspective, it is either the ovaries or the testes that produce these hormones, right? And since you did not have ovaries, but you didn’t know, the testes were producing these hormones, but when you had them removed there was nothing left to make these hormones. Is that how it works?
Sarah: Yes, that’s what I am saying.
Esther: Right, ok, how fascinating. What other consequences does this have for you? I guess hormone therapy is that something you are going to have to keep doing indefinitely.
Sarah: Yes, that is something that is going to go on permanently, the hormone replacement, since when I was 19, after I had the operation, and I am now 28, but it has been going on forever, unless they come up with some radical new treatment, I am not going to be able to stop taking hormones at all.
Esther: How are you with that now? Is it kind of balanced for you? Is it working for you what you are doing at the moment with regards to your hormones?
Sarah: Yes now I am taking testosterone instead of oestrogen I feel much more balanced emotionally, and physically, I am not getting any of the same effects I got from the oestrogen, with the oestrogen it felt like going through puberty again which got…
Esther: I was going to say, once is enough for that, right?!
Sarah: Yeah, once was definitely enough, and going through it again was awful.
Esther: I bet!
Sarah: With having growing pains in the chest and things like that.
Esther: Although I assume your puberty, because of being intersex, I guess your puberty was different as you have already described, I mean different from other girls. What was that like for you, the first time around?
Sarah: So, first time around, instead of developing the body underarm hair, or pubic hair, I didn’t develop any of that. I had a bit of breast development but not a massive amount. I did gain a little bit of weight around my hips but that was about it really, I didn’t get anything like what other people got. Obviously I didn’t get periods, which was a big thing that people expect from puberty. Puberty was a bit strange in that it was in two sections, I suppose, from the ages of about 10 to 13 I had body development, like the bit of development in my breast area and then nothing happened at all until I was about 17 and then I got a bit more breast tissue and that was painful, to be honest, and I have heard that is quite common among people who have got Androgen Insensitivity, that puberty happens in these two distinct stages; and to go through puberty again, a couple of years later, was not good.
Esther: Wow, yeah. What was it like besides that, going through all that, at that age? Did you get picked on because of it? I don’t know, what you are saying, because you thought you were a girl basically, right? But then some things that “should’ have happened didn’t happen, did people give you a hard time?
Sarah: Nobody particularly gave me a hard time about that, certainly my immediate friends knew that I didn’t have periods and things like that and I think they were as mystified as I was as to why that wasn’t happening, but nobody gave me a hard time, because I don’t think it was that obvious to other people around me.
Esther: Except to maybe people that knew you well that you talked to, I suppose.
Sarah: Yes, people who knew me well knew that these things weren’t happening for me, but nobody every gave me a hard time about it. I think some people were intrigued by what could possibly be happening but then again so was I. I was lucky in that regard, that nobody gave me a hard time.
Esther: As I mentioned just that before we started the recording, you were on Queer Britain, an episode of Queer Britain, you were feature in that weren’t you? Where you spoke a little bit about it with Riyadh. Did anything come of that? Did you hear from people, did you find support somewhere, or did others say to you: thank you so much for that, it really helped me understand more of what I am going through, or what someone close to me is going through?
Sarah: Yeah I did, after that I had quite a lot of messages and comments from people on social media saying: thank you for sharing your story, it was really interesting, I didn’t even know that intersex existed. I had messages from a lot of friends saying they didn’t really know what was going on with you but thanks for explaining that. And, at the job I was working at at the time, I was working for a large corporation and their LGTB network, people within that found my story on Queer Britain really interesting. I got interviewed for an article that was put on the intranet for our company and I got positive feedback from that, including, I remember one person in particular, commented on that to say: when I saw the headline of this article I thought it was going to be a load of all rubbish basically, but I read it all and I feel educated, and it has changed my mind about what I actually thought I was going to read. At times people react to headlines, and buzzwords, about these sorts of things: gender and sex, and then make a snap decision about what they think about it, without even taking the time to understand what things like intersex, non-binary and trans actually mean.
Esther: Yeah, yeah. So I mean, in your journey through all this, and with gender especially, what do you understand gender to be? What does that even mean to you now?
Sarah: I think I have quite a complex relationship with gender, I think just because growing up we are all made to think that there are just these two particular boxes, if you like, of male and female, and that is how everyone has to be. I think there are just as many ideas of gender identity, or gender expression, as they are people on the planet because nobody can experience gender in exactly the same way. It is a feeling within you that you can’t necessarily explain. I know I feel the way I do about gender, which is that I don’t feel entirely female, or entirely male, I feel a mix of the two, some days I might feel more on the masculine side and other days I am more on the feminine side, but in my head I am me. I remember being at school and feeling outside of what the boys were like, and also outside of what the girls were like, and I always had this sense of being something other than what everybody else was, and I couldn’t pinpoint it.
I didn’t even hear the term “non-binary” until I was well into my twenties and I finally had a word for what I felt about myself after a lot of confusion — and struggle, I suppose — that I had gone through over the years. For quite a long period I had struggled with this idea of: well, I don’t feel entirely female, I don’t feel that that necessarily describes who I am. Does this mean that I am male? Does this mean that I should present myself in that particular way? Is that the right thing for me to do? And within myself, I knew that I didn’t completely identify as male, and never would. So coming to the realisation that I was something other than these two particular boxes was quite comforting, because I wasn’t one way or the other myself. I think that is really important for people to understand that some people who exist, they are perfectly happy living and identifying as the gender that they were given, if you like, at birth. Then other people who are trans, feel differently to the gender identity that was given to them, as it were. Then there are other people who feel different to the gender they were given at birth but also don’t feel particularly one way or the other. I think it is really important to acknowledge that those people exist because I have heard so many times people saying that people identity as non-binary, or as gender-fluid, for attention, or that it is just people trying to be different and stand out and that is really ridiculous because people who are non-binary just want to get on and live their lives the same as anyone else.
Esther: Yes, being who they authentically are. I was thinking if you want to get attention there are different ways of getting attention that is less stigmatised and potentially dangerous, right? Oh my god…
Sarah: Yeah! I feel any kind of alternative gender identity or presentation people talk about people wanting “just to be different”, or “to get attention”. And I was out as queer, to put it in a broad sense, when I was at school. I came out to a friend as bisexual when I was 12 but then people said: you can’t be bi, there is no such thing, you are either gay or you are straight, you are just doing this for attention. And then, I get pegged as: oh well you are a lesbian, that is what you are; you are either gay or straight, you have got to be one or the other, you have got to choose essentially. And that is sort of how I feel non-binary are being spoken about and what they are being told these days, which is that you have got to be male or female, you have got to choose, you can’t be anything other than one of those two. Attention, you can got that in far safer ways than as coming out as non-binary. I have died my hair purple, I think that is going to grab far more attention than anything else and it is far safer for me to die my hair purple than it would be to say that I identified as something just for the sake of it.
Esther: Yeah, absolutely. Wow you have quite a story, I am sure it has been really informative for people, it has been really informative for me as well. When babies are born, obviously when you were born you appeared female, right? But there are also occasions, or situations, where babies are born and their physical, the outside, the genitals, are not completely male or female. I have heard that surgery is performed on babies to make them more binary when their genitals are not quite one or the other. Do you know anything about that?
Sarah: I do know from talking to other intersex people, and knowing other intersex people, who have got other differences of sexual development, went through different variations on what it means to be intersex, I do know people who were given surgery as infants and their doctors, and indeed their parents, do seem to have this desire to normalise, if you like, a child’s genitals to make them fit into one box or the other. There is this stigma in society of a child being born and you can’t clearly assign it to being male or female, and rather than make a child make their own decision as they get older, doctors do force unnecessary surgery onto intersex infants, and intersex children, and indeed coercing intersex adults into having surgeries that they don’t necessarily need. And there is a massive campaign amongst intersex people, and our allies, to eradicate this practice of unnecessary surgery on intersex infants. The only time surgery should be performed on intersex infants is if there is some medical necessity which means the genitals need some kind of small alternation, for example, if they are not going to be able to go to the toilet properly of course there needs to be something to be done about that because a child needs to be able to pee, that is quite basic. But they are not just altering a child’s genitals to allow them to pee they are doing it to make the child’s body conform to this standard that society has. What a lot of intersex people would say is to leave the child’s genitals alone so that in the future the child can make a decision for themselves, when they are an appropriate age, if they want to have any surgery to change what is there; or if they are just happy to stay as they are. And that is a really important thing to do because intersex people need to be afforded bodily autonomy, that is that they make decisions about their own body, and nobody else makes the decisions for them, because doing that is completely unfair. We wouldn’t do that to non-intersex children, nobody would give birth to a baby girl and a doctor would then turn to them and say: wouldn’t you rather have a boy because we can do some surgery for that if you want us to? That just sounds totally ridiculous. But when you say the same for an intersex child people think that it is a really great idea, because they don’t want to tell other people that their child can’t be clearly defined as male or female.
Esther: Yeah, well, that makes a lot of sense — the way you just put it, it is ludicrous when you think about it that way.
Sarah: Yes it is completely ludicrous! It all comes back to this binary idea of male and female and that your body is supposed to look a certain way and we shouldn’t be forcing that upon children, it is such a drastic change to be given vaginoplasty or phalloplasty and you could end up with a child who grows up incredibly miserable, to put it mildly, because they have had their body altered with no say whatsoever and they don’t align with the body that they have been given, what has been forced upon them by a doctor or by their parents. People essentially being mutilated just because they don’t look quite right and intersex genital mutilation needs to end and it needs to end now.
Esther: Amen to that, is there any support group or activist organisation to do with that?
Sarah: There is a particular group called Interact, they are to do with intersex advocacy and there is also Intersex UK, who do a lot of work and provide information about what it means to be an intersex person and fighting against the intersex genital mutilation. Those are a couple of the groups that are out there and available for support for people who are intersex or for people who just want to know more about what being intersex means.
Esther: Ok, is there anything else that you would like to add, or that you would like people to know about intersex?
Sarah: I think one thing I would want everyone to know is that every intersex persons life and journey through what being intersex means is completely different, there isn’t one overarching umbrella statement that could cover what intersex means to every single person, just because everybody’s experience is so unique. So just because somebody has met an intersex person, that doesn’t mean that what they went through, or what difference of sexual development they have, that is not the same for every other person, it is a very individual thing.
Esther: Well, I think that sounds like a great time to wrap up. Thank you so much for talking to me about all this, I look forward to sharing it with the world!
Sarah: Well, thanks very much for interviewing me about it!
Originally from Stoke-on-Trent, Sarah fell in love with Norwich while studying history at University of East Anglia and has now lived in Norfolk for nearly 10 years. Having been involved with the Evolve youth support group for trans and intersex young people until the age of 25 and making sure to bring homemade cakes to every meeting, Sarah and her friend Fiona began a peer support group for trans and intersex people which they hope to build upon in the near future (Covid permitting). In 2017, Sarah was lucky enough to participate in the BBCThree programme Queer Britain discussing non-binary gender identity and intersex issues.
Sarah discovered she was intersex at age 19 and came out as non-binary in her early-twenties. She uses she/her or they/them pronouns and identifies as queer. When not working, Sarah can usually be found reading up on witchcraft and folklore, pottering around in her garden, baking or hanging around on Instagram @sarah_morag_corke and Twitter @madgirlsec
What we discussed
- Queer Britain Queer And Proud, episode 6 – watch below or on iPlayer
- IntersexUK – British NGO-Human Rights Defenders educating & consulting. A child’s right to bodily autonomy. A families right to support. Find them online, on Facebook or Twitter
- interACT – raising intersex visibility, empowering young intersex advocates and promoting laws and policies that protect intersex youth. Find them online, on Facebook or Twitter
- Evolve – a local group for transgender, genderqueer, gender-questioning and intersex youth aged 11-25. Find them online or on Facebook.
Additional resources & useful links
- Intersex population figures by Intersex Human Rights Australia
- United Nations Intersex Fact Sheet
- BBC News: Intersex surgeries: Is it right to assign sex to a baby?