Intersex: Learning to love my body
By Mir Is
English translation: Zoraida A. and Mar Is
*This story was shared exclusively with Brújula Intersexual, if you want to publish it in another place, you first have to contact us in order to ask authorization to the author: firstname.lastname@example.org
It’s been a couple of years since I experienced many personal changes, I had to deal with a pile of emotions and, above all, I learned about my body and myself, and finally I have enough strength to share my story with all of you.
I was born in 1979 in a private clinic in Mexico City, and even though I was born with genital differences, none of the doctor mentioned to my mom that something was wrong with me. They just said that I was a healthy little girl, even though one of the doctors in the clinic told my mom that she should take me for a medical check-up to the Hospital Infantil Federico Gomez. Since I didn´t have any health problem, my mom just ignored the recommendation, although she noticed that I was different from other girls. And it wasn’t until I was 4 years old that she took me to the doctor to find out why I was so different. The doctor transferred me to the Hospital Infantil Federico Gomez, where the first diagnosis was “clitomegaly” and “ambiguous genitalia”. They performed a karyotype test and the result was 46XY (chromosomes considered typically male).
The doctors told my mother that I had a genital “malformation”, and that they would have correct it with surgery. So, at the age of 3, I underwent the first surgery that consisted of reducing the size of my clitoris. During that surgery it was determined that my urethra and vagina were separated. A year later, a second surgery was performed, in which the two gonads where removed. After the surgery they analyzed the gonads, and I was diagnosed with “pure gonadal dysgenesis”, as stated in the summary of my medical record, which is the only documentation I was able to get.
My memories from that time are very vague. I have blocked most of them. I only remember the anguish I had before the surgeries and the physical pain they caused me, especially the second surgery.
For many years, my life was a coming and going from the Children’s Hospital, between medical consultations and beyond uncomfortable genital exams where several doctors and residents were examining my little naked body, experiences very hard to assimilate.
I remember an experience at the hospital that marked my life. They took me to a room full of medical students, there were probably more than 15 people. I was 4 or 5 years old, they took me in my grown, put me in front of them and undressed me so that everyone could see me, like if it was a freak show. I don’t remember what the doctor was saying about me, but it was one of the most horrible experiences of my life. Until now it is difficult for me to speak in public because of that, it brings me back to that moment.
At 11, the doctors decided it was time to start the “hormone replacement therapy “, because they removed my healthy gonads at 7 and I no longer have my natural hormonal production. This treatment consisted in taking a pill for 21 days every month, and when I was 13 the estrogen treatment was added. It should be said that the doctors told me I had to take those pills so that my body start to develop in a more feminine way, and that I should take this treatment for life. It was a complicated situation because despite what the doctors had told me, there was a moment where I just didn’t like taking medicines, and many times I forgot taking them, so at 21 or 22 years old I stopped taking them at all. I know that this can cause me health problems, but I don’t what to have anything to do with doctors and hospitals anymore. So far, I have not done any medical exam to see if my health is ok.
Between 4 and 7 years old I was also in psychological treatment as a result of the diagnosis, but I don’t recall that they gave me any information about what was happening to me. The treatment only consisted of “play therapy” sessions, they gave me different “girl” and “boy” toys, and they observed which ones I chose to play.
When I was 15, I went to the doctor for a genital exam, my older sister accompanied me. In this exam the doctor would take a vaginal sample to carry out studies. The exam was very uncomfortable and very painful, and they couldn’t take the sample since my vagina is too closed, therefore the doctor concluded that I had to undergo a surgery call vaginoplasty. I perfectly remember the comment that the doctor made to my sister while she was doing the genital exam, she said “she need surgery because imagine if she get married, she won’t make it!…” [referring to the intercourse], I understood that she meant that I could die If I had sex with my husband. I felt very scared, it was a rather unfortunate comment that generated me fear of sexuality that for a long time I could not get rid of. Obviously, I tried to avoid any romantic relationship that could lead to sexual intimacy. That was the last time I visited that hospital. I no longer wanted to return to the medical appointments, although I was still taking hormonal treatment.
Finally, I decided not to get surgery and continue with my life. I no longer want to go back to hospitals, I have generated a great rejection to them and, if possible, I avoid any contact with doctors and hospitals.
It was until I was 21, that I began a relationship with a man, but I didn’t tell him about my body. I always avoided to had sexual intercourse with him. He never asked me anything. I don’t know to what extent that was good, because I never knew what my body was capable of tolerate in sexual intercourse, that relationship lasted 5 years.
For a long time, I didn’t have the need to tell any possible partner what was happening to me, because I limited myself in sexuality. Until around 2 years ago, when I met another man that I fell in love with, he wanted to have intimacy with me, it was the first time in a long time that I felt what I felt for him, I felt desired like never before. I felt so special, and that’s why I dared to speak to him with the truth. I told him the reason for my refusal to make love with him, for a moment I hoped that he would accept me and say that there was no problem, that he would be with me… but he walked away from me. I felt so frustrated that I couldn’t be with him, because I felt that with my body, I couldn’t prove what I felt for him. I felt that I couldn’t relieve, not only the desire, but also the love that I felt for him. It was so sad, so frustrating.
I think that few people can understand how we feel when something like this happens, feel rejected, inadequate and abnormal, when our body doesn’t fit in with the idea that other people have.
In 2015, I asked for my medical record at the Hospital Infantil Federico Gómez, they only gave me clinical summaries of endocrinology, urology, and psychology. The only thing they told me was that “it was not possible to get my complete medical record.” And since I was suffering of a deep depression at the time, I didn´t have energy to insist any further. It was very hard to go back to the hospital and imagine that maybe at that time there were children who were going through the same things that I went through… or even worse situations. A doctor told me that it was obvious that they would not give me my complete medical record because the hospital was protecting itself from a possible lawsuit, for everything they had done to me.
All the situations I lived caused me a lot of problems. My body was healthy when I was born, during my first 3 years of life I didn’t have any health problems, but due to the first clitoral reduction surgery they left me a body with scars and lack of genital sensation, and due to the second surgery in which my gonads were removed, I became dependent on a hormone replacement therapy, which I have stopped taking and I don’t know what consequences it may have to my health in the future. Also, all the humiliating situations I experienced in hospitals, such as, genital exams in the presence of many doctors, medically unnecessary surgeries, post-surgical treatments and constant visits to the hospital as a child, left me with a feeling of being inadequate, with difficulties in establishing romantic relationships, as well as a deep depression that I haven’t been able to completely overcome. Due to this, I have been in psychological treatment on several occasions to overcome this depression, but currently I haven’t been able to continue my psychological therapy since I don’t have enough money to pay for it.
For me everything that I lived in the hospitals is as if the Nazis were still among us, experimenting with our defenseless bodies. I don’t know if the comparison is appropriate, but I see it like that. I still have nightmares with the terrible experiences that I lived.
This time has been very difficult for me, because I have had to face my internal demons that had been asleep for a long time and one day, they woke up together. I never thought, that everything that happened could affect me so much in my physical and emotional health, especially, to the point of spoiling my plans to graduate from college and get a job, because I was paralyzed and I didn’t feel the strength or encouragement to do anything.
A couple of years ago, I managed to get in touch with other intersex people. Meeting other people who have gone through similar situations, has helped me to not feel alone anymore and to know that there are people with whom I can talk and that we feel empathy for each other.
In relation to having a partner, I still have the hope of meeting someone who loves me as I am. Although I also know that before this happens, I must work a lot on my own self-esteem, which is very damaged, and that is why in the past I accepted to get involved in relationships that have damaged me more than offering me well-being and happiness.
I hope my story can help that other children not have to live what I lived, that is my greatest wish.