CAH and I: a prisoner of puberty and early menopause
An eternal, toxic, and love relationship with my body
Hi! My name is Frida. I am a girl from Oaxaca, Mexico, but I am not a typical girl. I am different; I have something that makes me special, something that has made me happy: I have Congenital Adrenal Hyperplasia or CAH. However, not everything has been happy in my life; I have been through different difficult situations. Let me tell you a little of what I have experienced: puberty and menopause.
It feels like the third time, or maybe the fourth, I’ve gone through puberty. I’ve lost count! The first time happened when I was about two or three years old. I looked like a typical girl, but, suddenly, the change started: I went into early puberty, but it wasn’t the typical puberty a female goes through, it was more like a male puberty. I started getting hair all over my body: pubic hair, beard, moustache, hair on my legs and arms, etc. By the time I was in kindergarten, I was the tallest pupil in the school, my clitoris started to grow, my genitals became ambiguous and I started to get acne.
I had no choice over how my body would develop. My parents noticed the changes in my body and took me to the hospital but I didn’t get any medication and I didn’t receive any treatment. My parents didn’t take me to the hospital again because the endocrinologist had said that what was happening to me was something “normal” and typical. At the time I thought—what?! Was everything really okay with my body? I became an aggressive person because of the excessive amount of androgens in my body—the result of not receiving any medical treatment.
Childhood and ‘adolescence’ (3 to 15 years old) were hard for me. I always knew I wasn’t like the other girls. I always knew I was different, and, sometimes, I believed that I was a girl in a male body. My older sister used to make fun of me because I didn’t look like a girl. She used to say that I was ugly, I had a man’s voice and a man’s body. My classmates and neighbours didn’t say anything to me about my physical appearance, but I always knew the rumours they said about me. And while all the girls in my school were going through puberty and developing feminine characteristics, I felt uncomfortable because I was still the same person and increasingly getting more of a typically male appearance.
When I was 15, I asked my parents to take me to a specialist. I needed to know what had been happening to me and I didn’t feel good about my body—maybe because of the comments my sister used to make about me. I remember that my parents took me to the hospital and three paediatricians checked me. One of them told me that I wasn’t normal, he kept saying “you aren’t a boy or a girl, you aren’t normal. You are abnormal, you have both sexes”. Those words hit me so hard and made me fall into depression.
A few months later, my parents took me to an endocrinologist, who checked me and determined the diagnosis: I had CAH—Congenital Adrenal Hyperplasia. It was difficult for me at the beginning. I needed someone to talk to about my condition but, when I wanted to talk to my parents, they didn’t listen to me and always told me not to tell anyone about CAH, not even my sisters. All I wanted was to talk to someone about my feelings but it seemed to be a forbidden topic.
I started the medical treatment with cortisol, antiandrogens and female hormones, so it was like going into puberty again, but “the right way” for me: a female puberty. I experienced a typical female puberty: breast development, my first period, etc. I became more sensitive, I used to cry all the time and for every insignificant reason—maybe it was an effect caused by the hormones. Nevertheless, I felt happy because I started to look like a more typical girl and I wasn’t virilised anymore.
After doing a lot of thinking, I realised that being intersex didn’t make me abnormal, but it made me different from what is typical. It made me special. Nevertheless, I felt happy about looking like a typical girl and I still feel happy. I’ve always identified more as a girl than as a boy and wanted to look this way.
Four years later, I decided to stop the hormonal medication. I wanted to see if my ovaries worked without it but they didn’t. My breasts shrunk and sweating increased. Even though I was still taking the antiandrogens I thought that I was getting slightly virilised again, but it wasn’t noticeable. Maybe the virilisation was only in my mind.
A few months later, my body started to produce female hormones by itself. I was experiencing puberty again, I guess! My breasts started to develop once again, my hips widened a little bit, and my period came back. I was really happy because my ovaries worked and I didn’t have to take hormones to have all the pubertal changes a typical girl would have.
I felt really good with my body but it didn’t last long. Almost a year later, my ovary function declined and I began to experience some of the changes most women have during menopause: decalcification, hot flashes, trouble sleeping, breast shrinkage—again—and suddenly my period became irregular until it stopped.
I talked to my doctor and, after some blood tests, she told me that my ovaries didn’t work well and I should restart hormonal medication. She explained to me that the lack of female hormones was causing decalcification and it could also lead to cancer.
Now, I am 23. I take hormones and I’m experiencing puberty again. It’s a little bit stressful to deal with it—it’s puberty again! What a pity! Acne and changes of mood again—I don’t like puberty, but I’m conscious that if I stop taking hormones I will go into menopause.
I’m a prisoner of puberty and menopause. What can I do? I don’t know, I think there’s nothing to do. Don’t confuse what I say—this experience doesn’t make me feel uncomfortable or sad. I’m happy with myself and I’m proud to be intersex. Every intersex person I’ve met, every good, difficult or bad experience I’ve gone through, and every good or bad comment people have made about my past and present physical appearance has moulded me to become the strong and comprehensive person that I am.