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Emma Jones

Emma Jones

Emma Jones

Emma Jones

Infertility and endometriosis

Infertility and endometriosis

Infertility and endometriosis

Infertility and endometriosis

Infertility_Endometriosis

Interview by Marta Bausells and Inés Alcalá Freudenthal, July 2017

Interview by Marta Bausells and Inés Alcalá Freudenthal, July 2017

Interview by Marta Bausells and Inés Alcalá Freudenthal, July 2017

Interview by Marta Bausells and Inés Alcalá Freudenthal, July 2017

Interview by Marta Bausells and Inés Alcalá Freudenthal, July 2017

Emma is a primary school teacher in Wales. She loves seeing children develop to the point where they can write stories and express opinions. She also has endometriosis, a condition that affects around 10% of women in the world but which is still misdiagnosed in millions of cases. Until celebrities like Lena Dunham raised awareness of the disease, it was barely present in the collective imagination. Before her final diagnosis at age 19, the outrageous things Emma was told by doctors included: “This is part of being a woman,” “The side effects of this medication could make you grow a tiny penis” and “Have you tried paracetamol?” We talked to her about coming of age thinking she could never have children, her feminist awakening and how she lives with endo.

Emma is a primary school teacher in Wales. She loves seeing children develop to the point where they can write stories and express opinions. She also has endometriosis, a condition that affects around 10% of women in the world but which is still misdiagnosed in millions of cases. Until celebrities like Lena Dunham raised awareness of the disease, it was barely present in the collective imagination. Before her final diagnosis at age 19, the outrageous things Emma was told by doctors included: “This is part of being a woman,” “The side effects of this medication could make you grow a tiny penis” and “Have you tried paracetamol?” We talked to her about coming of age thinking she could never have children, her feminist awakening and how she lives with endo.

Emma is a primary school teacher in Wales. She loves seeing children develop to the point where they can write stories and express opinions. She also has endometriosis, a condition that affects around 10% of women in the world but which is still misdiagnosed in millions of cases. Until celebrities like Lena Dunham raised awareness of the disease, it was barely present in the collective imagination. Before her final diagnosis at age 19, the outrageous things Emma was told by doctors included: “This is part of being a woman,” “The side effects of this medication could make you grow a tiny penis” and “Have you tried paracetamol?” We talked to her about coming of age thinking she could never have children, her feminist awakening and how she lives with endo.

I started having problems with my period when I was 14. We tried loads of things at home before we went to the doctor, because my mum [who is a nurse, and knew about this condition through a friend who had it] knew I would be told: “You are too young to have endometriosis, get over it, it’s all part of being a woman”. When I went to the doctor, we tried some other stuff for the next four years, none of which worked. One tablet I was on was a hormonal treatment. One of the potential side effects was that I could grow a tiny penis, facial hair, body hair. I didn’t grow a tiny penis [laughs], but it made me quite ill and changed my body. None of my clothes fitted me. I had just started uni, and I didn’t want to go out, it was horrible. Eventually, when I was 19 or 20, we went to see the specialist, he did a laparoscopy and he confirmed that I had endometriosis. Then he put me on something else, that worked, and I’ve been on it ever since. It’s been managed for quite a while now.

I started having problems with my period when I was 14. We tried loads of things at home before we went to the doctor, because my mum [who is a nurse, and knew about this condition through a friend who had it] knew I would be told: “You are too young to have endometriosis, get over it, it’s all part of being a woman”. When I went to the doctor, we tried some other stuff for the next four years, none of which worked. One tablet I was on was a hormonal treatment. One of the potential side effects was that I could grow a tiny penis, facial hair, body hair. I didn’t grow a tiny penis [laughs], but it made me quite ill and changed my body. None of my clothes fitted me. I had just started uni, and I didn’t want to go out, it was horrible. Eventually, when I was 19 or 20, we went to see the specialist, he did a laparoscopy and he confirmed that I had endometriosis. Then he put me on something else, that worked, and I’ve been on it ever since. It’s been managed for quite a while now.

“There was no information about endometriosis and that’s why I thought: ‘This means no kids’.”

“There was no information about endometriosis and that’s why I thought: ‘This means no kids’.”

“There was no information about endometriosis and that’s why I thought: ‘This means no kids’.”

“There was no information about endometriosis and that’s why I thought: ‘This means no kids’.”

“There was no information about endometriosis and that’s why I thought: ‘This means no kids’.”

There wasn’t much information about endometriosis available to me as a teenager. I mean, we had dial-up Internet but no Google or Wikipedia. There was no information about endometriosis and that’s why I thought: ‘This means no kids’. Even when I went to see the specialist, he didn’t really explain anything. I don’t remember being given any information, in terms of a leaflet or an information sheet. He talked to me like I was a child. He explained it in a very simplistic way. So I didn’t have any information until I was much older and I went to look for it.

I suppose my condition impacted on more than just my health. I ended up writing about women’s issues and motherhood in my undergraduate dissertation. This was 11 years ago so it’s quite dated now but the hypothesis was that all women are judged in relation to motherhood. From when you’re born, you’re judged as a mother in waiting, through adolescence and young adulthood you’re judged as a sexual object, then when you have kids you are judged as a mother — and that’s all you are until you die. If you don’t have kids, when you pass the sexual objectification period you become an ‘other,’ you are outside the viable spectrum of womanhood and feminine gender identity.

There wasn’t much information about endometriosis available to me as a teenager. I mean, we had dial-up Internet but no Google or Wikipedia. There was no information about endometriosis and that’s why I thought: ‘This means no kids’. Even when I went to see the specialist, he didn’t really explain anything. I don’t remember being given any information, in terms of a leaflet or an information sheet. He talked to me like I was a child. He explained it in a very simplistic way. So I didn’t have any information until I was much older and I went to look for it.

I suppose my condition impacted on more than just my health. I ended up writing about women’s issues and motherhood in my undergraduate dissertation. This was 11 years ago so it’s quite dated now but the hypothesis was that all women are judged in relation to motherhood. From when you’re born, you’re judged as a mother in waiting, through adolescence and young adulthood you’re judged as a sexual object, then when you have kids you are judged as a mother — and that’s all you are until you die. If you don’t have kids, when you pass the sexual objectification period you become an ‘other,’ you are outside the viable spectrum of womanhood and feminine gender identity.

There wasn’t much information about endometriosis available to me as a teenager. I mean, we had dial-up Internet but no Google or Wikipedia. There was no information about endometriosis and that’s why I thought: ‘This means no kids’. Even when I went to see the specialist, he didn’t really explain anything. I don’t remember being given any information, in terms of a leaflet or an information sheet. He talked to me like I was a child. He explained it in a very simplistic way. So I didn’t have any information until I was much older and I went to look for it.

I suppose my condition impacted on more than just my health. I ended up writing about women’s issues and motherhood in my undergraduate dissertation. This was 11 years ago so it’s quite dated now but the hypothesis was that all women are judged in relation to motherhood. From when you’re born, you’re judged as a mother in waiting, through adolescence and young adulthood you’re judged as a sexual object, then when you have kids you are judged as a mother — and that’s all you are until you die. If you don’t have kids, when you pass the sexual objectification period you become an ‘other,’ you are outside the viable spectrum of womanhood and feminine gender identity.

“From when you’re born, you’re judged as a mother in waiting.”

“From when you’re born, you’re judged as a mother in waiting.”

“From when you’re born, you’re judged as a mother in waiting.”

“From when you’re born, you’re judged as a mother in waiting.”

“From when you’re born, you’re judged as a mother in waiting.”

I had to come to terms with redefining myself as a woman who couldn’t have children. I spent pretty much all of my adolescence knowing that I had endometriosis, and thinking: ‘That means I can’t have children.’ I spent a lot of time grieving the children I would never have, and eventually building an alternative narrative for myself that did not involve having children. I took a lot of solace in people like Germaine Greer and Lionel Shriver – women who had written about alternative feminine identities. I was trying to find a vision for myself and it was really hard because in general in popular culture that doesn’t really exist. It’s a lot better now than it was back then.

When it came to telling partners about my condition, it was tricky. Until fairly recently I always thought that it meant I couldn't have kids, and actually that’s not true. Endometriosis is a very weird illness and the amount of disease doesn’t correlate with the amount of symptoms, or the severity of them. None of those correlate to the impact on your fertility. For example, someone in my family who didn’t have any problematic periods whatsoever, was trying to have a baby for a long time, went to have IVF and they told her she had endometriosis. This was news to her and stopped her from having kids, she’s had them through IVF. Then there are other people like me who’ve had loads of symptoms and have been aware of it and might be able to have children without problems. It’s a mysterious disease. In terms of telling people it’s tricky because they may not know what endometriosis is and I also don’t really know if I can have kids or not.

I had to come to terms with redefining myself as a woman who couldn’t have children. I spent pretty much all of my adolescence knowing that I had endometriosis, and thinking: ‘That means I can’t have children.’ I spent a lot of time grieving the children I would never have, and eventually building an alternative narrative for myself that did not involve having children. I took a lot of solace in people like Germaine Greer and Lionel Shriver – women who had written about alternative feminine identities. I was trying to find a vision for myself and it was really hard because in general in popular culture that doesn’t really exist. It’s a lot better now than it was back then.

When it came to telling partners about my condition, it was tricky. Until fairly recently I always thought that it meant I couldn't have kids, and actually that’s not true. Endometriosis is a very weird illness and the amount of disease doesn’t correlate with the amount of symptoms, or the severity of them. None of those correlate to the impact on your fertility. For example, someone in my family who didn’t have any problematic periods whatsoever, was trying to have a baby for a long time, went to have IVF and they told her she had endometriosis. This was news to her and stopped her from having kids, she’s had them through IVF. Then there are other people like me who’ve had loads of symptoms and have been aware of it and might be able to have children without problems. It’s a mysterious disease. In terms of telling people it’s tricky because they may not know what endometriosis is and I also don’t really know if I can have kids or not.

I had to come to terms with redefining myself as a woman who couldn’t have children. I spent pretty much all of my adolescence knowing that I had endometriosis, and thinking: ‘That means I can’t have children.’ I spent a lot of time grieving the children I would never have, and eventually building an alternative narrative for myself that did not involve having children. I took a lot of solace in people like Germaine Greer and Lionel Shriver – women who had written about alternative feminine identities. I was trying to find a vision for myself and it was really hard because in general in popular culture that doesn’t really exist. It’s a lot better now than it was back then.

When it came to telling partners about my condition, it was tricky. Until fairly recently I always thought that it meant I couldn't have kids, and actually that’s not true. Endometriosis is a very weird illness and the amount of disease doesn’t correlate with the amount of symptoms, or the severity of them. None of those correlate to the impact on your fertility. For example, someone in my family who didn’t have any problematic periods whatsoever, was trying to have a baby for a long time, went to have IVF and they told her she had endometriosis. This was news to her and stopped her from having kids, she’s had them through IVF. Then there are other people like me who’ve had loads of symptoms and have been aware of it and might be able to have children without problems. It’s a mysterious disease. In terms of telling people it’s tricky because they may not know what endometriosis is and I also don’t really know if I can have kids or not.

“I’d like to think girls going through a similar experience will find it easier, and be more open to talking about sexual health.”

“I’d like to think girls going through a similar experience will find it easier, and be more open to talking about sexual health.”

“I’d like to think girls going through a similar experience will find it easier, and be more open to talking about sexual health.”

“I’d like to think girls going through a similar experience will find it easier, and be more open to talking about sexual health.”

“I’d like to think girls going through a similar experience will find it easier, and be more open to talking about sexual health.”

Most people haven’t heard of endometriosis, and don’t know what it is. One in ten women have it so it’s quite a lot and most of them don’t know they’ve got it, they think they’ve got something else. People are generally a bit embarrassed about it, and maybe a bit sympathetic, which is not really helpful or interesting, but it’s people’ natural reaction.

I think my condition has definitely changed my personality on a couple of levels. It happened in my teenage years, a life defining period of time. You find who you are and form and idea of yourself. I was in a lot of pain for half the time. I really tried hard to not miss out on school and not to miss out on stuff. I think I got quite tough because of that.

I had some not-so-nice experiences in my first sexual years. I suppose if I could change anything about being a teenager, dealing with this condition, it would be having the confidence to say “no.” That culture of the rite of passage is terrible. Our sex education was one lesson, it was an American video about Planned Parenthood, a girl in the class fainted! Reading Cosmo was my main source of information. I went to an all-girls school so it was quite open. We used to talk about quite gruesome stuff, like who shagged who around the back of the gym, but it was all bravado, loads of slut shaming. I’d like to think girls going through a similar experience will find it easier, and be more open to talking about sexual health.  

Most people haven’t heard of endometriosis, and don’t know what it is. One in ten women have it so it’s quite a lot and most of them don’t know they’ve got it, they think they’ve got something else. People are generally a bit embarrassed about it, and maybe a bit sympathetic, which is not really helpful or interesting, but it’s people’ natural reaction.

I think my condition has definitely changed my personality on a couple of levels. It happened in my teenage years, a life defining period of time. You find who you are and form and idea of yourself. I was in a lot of pain for half the time. I really tried hard to not miss out on school and not to miss out on stuff. I think I got quite tough because of that.

I had some not-so-nice experiences in my first sexual years. I suppose if I could change anything about being a teenager, dealing with this condition, it would be having the confidence to say “no.” That culture of the rite of passage is terrible. Our sex education was one lesson, it was an American video about Planned Parenthood, a girl in the class fainted! Reading Cosmo was my main source of information. I went to an all-girls school so it was quite open. We used to talk about quite gruesome stuff, like who shagged who around the back of the gym, but it was all bravado, loads of slut shaming. I’d like to think girls going through a similar experience will find it easier, and be more open to talking about sexual health.  

Most people haven’t heard of endometriosis, and don’t know what it is. One in ten women have it so it’s quite a lot and most of them don’t know they’ve got it, they think they’ve got something else. People are generally a bit embarrassed about it, and maybe a bit sympathetic, which is not really helpful or interesting, but it’s people’ natural reaction.

I think my condition has definitely changed my personality on a couple of levels. It happened in my teenage years, a life defining period of time. You find who you are and form and idea of yourself. I was in a lot of pain for half the time. I really tried hard to not miss out on school and not to miss out on stuff. I think I got quite tough because of that.

I had some not-so-nice experiences in my first sexual years. I suppose if I could change anything about being a teenager, dealing with this condition, it would be having the confidence to say “no.” That culture of the rite of passage is terrible. Our sex education was one lesson, it was an American video about Planned Parenthood, a girl in the class fainted! Reading Cosmo was my main source of information. I went to an all-girls school so it was quite open. We used to talk about quite gruesome stuff, like who shagged who around the back of the gym, but it was all bravado, loads of slut shaming. I’d like to think girls going through a similar experience will find it easier, and be more open to talking about sexual health.  

Illustration by Anna Nicolo

Illustration by Anna Nicolo

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