by Hendryhetta Snell
I only learned of the word ‘intersex’ in 2017, when my sister started doing research. That was the first time I was able to describe who we are: we are intersex.
The realities of living as an intersex person dawned on me at the age of sixteen. This was before I understood myself and my body, and before I had the language to describe myself. My friendship group at the time comprised of young women who had all started menstruating – and I hadn’t. Naturally, I began asking questions. I asked my mother why I hadn’t gone through puberty yet, and she would always assure me that many girls started their periods late and that I had no reason to worry. However, when I started asking why I hadn’t started growing breasts like my friends, she decided that we should go to the doctor to do tests and find out what was going on.
We went to our family doctor who examined me then gave me medication, four pills, to take in an attempt to start my period. The pills did not work. I was advised to return to the doctor once I had finished the course of pills and the doctor then referred me to Tygerberg Hospital to see a gyneacologist. Twenty-eight years later and I still remember every detail from that visit, I remember every single detail from the worst experience of my life on the third floor of Tygerberg Hospital. I waited until my name was called and was then ushered into an examination room. Despite the fact that I was underage, my mother was not allowed to accompany me. I undressed as instructed and waited for the doctor to arrive. At this point, I was still okay but that all changed when the doctor arrived. He examined me, left the room without saying a word, then came back with two other doctors. They examined me and left, again, in silence. In the end, more than twelve doctors had examined me, one after the other. I know this because I counted. More than twelve men walked into the room to look at my private parts, naked and exposed, without telling me anything or explaining anything to me.
I remember thinking: “Is there something so badly wrong with me that there needed to be so many doctors coming to look at me and none of them could say anything to me?” I mean, surely having that many doctors in a room to examine you means that something was seriously wrong, right?
When they were done examining me, the first doctor returned and told me that I could get dressed and that they would be sending me to get an ultrasound done, and after that I would need to wait for “the professor” to arrive. During the ultrasound, the woman conducting the scan kept telling me to drink water because nothing was coming up, this went on for an hour and after that hour there was still nothing on the scan. And still, no one had provided an explanation as to what was going on – I was only told that this professor would answer my questions. So back to the third floor I went, and I waited. At this point it was well into the afternoon even though we had arrived at the hospital in the morning.
When “the professor” finally arrived, I had to undress again. He did his examination, and when he was finished, he told me that he was going to go speak to my mother. Again, not a single thing was explained to me – the person being examined. What he said to my mother as I was getting dressed was simply, “Your daughter doesn’t have a womb. She will not be able to have children. She has two testes that need to be removed as soon as possible otherwise they could cause cancer.”
This sent my mother into a state, and she started crying. Of course, she did! This professor had just told her that her child could die of cancer without any real explanation. This was all she – and I through her – were told. No one took the time to try to help us understand, and when we tried to explain the hospital visit to my grandparents, we could not answer their questions because we ourselves did not understand.
A month later we got the call from the hospital that there was a bed available for me and that the surgery would be the next day, so we packed a bag and went. The ‘cancer’ needed to be removed so I had the surgery. After the surgery I waited at the hospital for the professor to come and explain to me what had happened to my body and why they had to cut into me, and for three days he was nowhere to be found. On the fourth day he finally came to see me – just to tell me that I was going to be released and that I needed to come back every month to get hormone medication. That was all. No explanation was given, nothing. All I knew was that I was born without a womb, and that the testes I was born with had to be removed because they could kill me.
For the first three months, I fetched the pills but never took them. I didn’t understand why I needed to take these pills so why would I, when nothing was ever explained to me? After the third month, I was appointed a new doctor who gave me some sort of clarity. He explained that I was being given hormone pills, and that I needed to take them for the rest of my life otherwise my bones would deteriorate; their purpose was to replace the hormones that were no longer being produced by my body since the surgery. He then offered me another option – an implant that I would need to replace every three months. I had replaced the implant seven times before I was sent to Tygerberg again because I had missed a few appointments. When I arrived, I had a new doctor, but my file was empty. I had to explain everything to this doctor, in the same place where this entire ordeal had begun for me, because the hospital had not kept my file. When I was done, he informed me that the implants I had been putting in my body had been known to cause breast cancer. After everything I had done, and put my body through, to protect myself from the possibility of cancer, a doctor put the potential of cancer back into my body. How was this possible? How could the doctors threaten me with cancer and then put that same cancer back into my body?
At some point, a doctor suggested another surgery – one that would widen my vaginal opening because he thought it was “too narrow”. Why? What was the point? I could not have children – if I could perhaps, I would have considered it then. So, who would this surgery benefit? I felt that this surgery would have caused as much pain and struggle as the first.
I decided that I would never take any hormone supplements again. I also decided to never go back to the hospital again. I don’t want to let a doctor, or a gynecologist examine me like that again. I will never go through that trauma again. I refuse to.
The doctors and that professor had tried to scare me and my family into making decisions about my body since that first visit to Tygerberg. It all started when they said that I would develop cancer if I did not cut out the ovaries I was born with, then they put me on hormone medication that could potentially lead to cancer and said that without it, my bones would fail me. All this without actually explaining to me why this was happening and what was going on with my body.
It was only when my sister, who is also intersex, started doing research and encouraged me to join a meeting in Johannesburg that, after so many years, I was finally able to understand what I had gone through and why. I felt ecstatic. I just wish that we had, had more information and education about being intersex when my journey began. I wish that that professor had explained what was happening and why. It would have lessened all the struggles I went through because at least I would have understood who I am. It would have made my life easier, and maybe my mother would not have been scared into agreeing to the doctors’ decision. Education on intersex issues needs to be more accessible. Not just for doctors, but for everyone. Where I am from, many people don’t speak English, so trying to make sense of a complicated language and medical terms is difficult. This is something many parents, like my mom, struggle with. If I could, I would encourage parents not to let doctors scare them, but to rather let their children make their own decisions.
Ever since I found out that I am intersex I have been able to live my life more fully. I have been able to bloom. Through my journey, I had lost friends to questions like “So, if you can’t have children, you’re not a woman, and you’re not a man, so what are you?” – questions I could not answer. Now, since knowing I am intersex, I have been able to make more friends. I have been able to explain who I am and why, that I was born intersex, and I must be accepted as I am. I have been able to direct others to research and assist them with looking up answers to their questions and, in that way, being intersex has become an advantage because I can educate those around me. I am a proud intersex person because I’m different – I have my own superpowers. I am as free as a bird because nothing anyone says can harm me anymore. I am a superhero. As an intersex person who enjoys life, I would encourage other intersex people to do the same. Don’t let people’s words stop you, enjoy life!