"One friend told me ‘wow your body has the wisdom not to go along the path which all your ancestors did’.
My grandmother had 13 kids, the other 10 children. My mother, my aunts, all of them they went through the same scenario; and I am not saying it is bad, but somehow life took me away from that.
As a woman who has never experienced a natural menstrual cycle, I don’t know exactly what it is. I had a bleed from when I was 17, for 12 years but only with hormonal therapy. I remember when I was 13 and my friends started to cycle or menstruate, one of them was 11 when it started in her life, but I never had even the thought that something is wrong with me, 13, 14, 15, 16, 17, all of my class had menstruation and I was the only one without. Doctors would come to the school and they told me, it will soon come. It wasn’t until my mother started to panic, ‘something is wrong, you don’t have a cycle’. There were girls who didn’t have it until 16 and they were stressed, but I never felt the stress, and I am so proud that I never felt different or that something was wrong with me. But then my mother began taking me to the doctor and no one could answer why I didn’t have a cycle, so they prescribed hormonal pills. They told me I would have to take them for the rest of my life, but I didn’t understand. I always went to the gynecologists' with my mum, she would ultrasound me and then asked me to leave the room; she would communicate with my mum, I was never spoken to about my own body, I was 17. I would wait outside, when my Mother came out of the doctors room, I could feel her worry; I would ask her what they said, she told me ‘it is okay’.
Once I went to a male gynecologists', he was the best in Kazakhstan and he told me ‘you will never have kids and you will have these pills forever’ he told me that this area of my body is not operating. I left the room, I was shaking and crying and only then I understood what my mother was told previously by other doctors.
This is the most important part of a woman’s life in Kazakhstan and I am told I cannot do it! I was 18. I called my cousin, she came and we just drank, I don’t know if it was vodka or wine, but we drank. I felt that the whole world had collapsed. I guess I imaged I would have kids, because everyone did. Then I had these internal questions ‘who am I?’ this 18 year old girl trying to figure out where and what to study, which university to choose, which qualification to obtain; these questions were more important at that time, than what was happening with my body. So, I took the pills and went to England to study.
From time to time, I would take the pills, no one was controlling me to take them regularly. But I didn’t feel the difference; I take the pills and I am bleeding, I don’t and I am not bleeding. However I felt so much better without the pills, without these synthetic hormones, they were controlling; I didn’t feel in control of my emotions and I didn’t feel comfortable with the pills.
I started to do yoga and meditation and I began to really feel the body, like ‘oh my god, I have a body’ and then I felt a huge difference when I did or didn’t take the pills.
I was hysterical, so I stopped. The doctors told me it is bad if I do not take them because ‘I don’t have enough hormones’ my brain is not speaking or sending signals to the ovaries and uterus, there is not a connection between the head and womb space. They drew pictures, of my uterus, ovaries, and brain, they told me my brain is not sending signals and the only option is to take the pills, especially for oestrogen levels. Yet with alternative gynecologists' I had blood analysis and I had enough oestrogen as well as my appearance, they completely contradicted one another. Theoretically, my body hasn’t gone through puberty and yet I have big breasts and a very feminine body and this was confusing for them, it didn’t click. Usually when someone doesn’t have menstruation they can say very quickly why and it is seen in the shape of the body, but for me it was contradicting.
I was 26 and I didn’t have enough power in me to say ‘this is crazy! Are you sick?’. I received this unspoken message from my society that ‘I am not woman enough’; and this was a big question in me. In the society we also do not talk about menstruation or our bodies, we hide what is going on or not going on. You should hide your blood, your products, your body. I have never seen my mother in her menstrual phase. The first woman I saw menstruating was my best friend at school; for her it was very painful, and this was my first introduction.
Only now it is opening slightly, some women are trying to understand what is happening in the body. One friend also did not have menstruation, she was told she could not have children at the age of 19 and she tried to commit suicide because she didn’t know how to fit into the world in Kazakhstan. She is now 50, she survived but it is such a strong story to represent what is happening in the culture.
Thanks to this amazing, intelligent system, (points to her body), I didn’t take the path my parents wanted me to take. There was an assumption of how my life should be, marriage and children based on the society. But once I got divorced, it was life changing, I started to discover my body. I stopped relying on the doctors and came to my own intuition.
I saw a YouTube video; the scientist read a list of things to check if you don’t have menstruation. The first was Kallmann’s syndrome. Up until this point no one had mentioned this. Kallmann’s syndrome is when you don’t have smell and I do, but my father doesn’t. It was a bingo moment.
I researched, I found that 1-in-30,000 women have the problem which I have. I diagnosed myself and I wrote to some specialists in Switzerland. I was invited by the group of researchers; it was paid for by the university in Switzerland and they researched me. They measured my hands, my legs, they took my blood every 10 minutes one night to register my growth hormones which are more apparent overnight. It turned out I did not have enough of a growth hormone. My blood is now in the world DNA bank and they are still researching it. I found out I have this condition because my father does not have a sense of smell. It is so interesting; I sent my father’s DNA to them also and they are still investigating. They found the malfunction in his DNA, but not mine; for them it is very curious.
This condition helped me to enter more existential questions; who am I? what am I doing here? It did not work for my life in Kazakhstan, I was so angry and such a trauma after my divorce. For nine months I did nothing, my parents were afraid. How a person who loves you can just say, ‘I love you, but I cannot be with you because you don’t have menstruation and cannot have kids?’; there were so many things involved. I realised the only person who can love me is me. If I do not accept this, I will not find it in anyone. This led me to yoga, meditation, dance, movement, I am getting to know so much about the body, this system and how it responds.
Here in this community, how I am living now, I enjoy it so much; it brought me a lot of confidence in the way my body is. When I talk to women, they understand. In Kazakhstan they freak out, but most of the time I meet lots of understand and presently I do. But to talk about it with Men and meet understanding there is different.
When I am in Kazakhstan, I feel so unsafe to share this and be there as I am. I feel that I am not enough, because when you marry and when you meet a man, you are thinking about marriage and you marry not only him but the entire family and that brings me a lot of tension.
I do not have to share it with one person, I guess I carry the memory of my ex-mother-in-law. I told her ‘it is my body and my uterus, and I can do whatever I want’ and she told me ‘no, you are taking away from us the opportunity to have grandchildren’ and therefore your body is not only yours. I remember telling her ‘we will not talk about it again’. Still there is a pressure.
Currently I meet men and they see me, not the way I look, what I do or my health condition. They see my soul, not as an object to have children, healthy children. When I was younger the thought of not having children brought me turbulence and now I see there are so many possibilities to have children. Everything has its reason and if I was given this body, with this story; then that is my way. It brought me so much wisdom, I would not be as I am now. I guess I would have kids and be married still and probably not be happy. I don’t think I would be happy.
I had this question in me ‘am I a woman if I don’t have menstruation?’, it is still settling in, but I have an amazing female body and yes there is a sort of description of a woman in a female body, distinguished somehow by fertility or menstruation, but hell! I am a Woman, and I am very happy to be in here (points to body) and explore and search and maybe I have a message for those who don’t have a menstrual cycle that it is okay, you are enough the way you are. If god made it like this, it is how it is supposed to be.
They checked my DNA and they discovered there was a malfunction in my DNA, coming from my Father’s side.
This condition in my body made a huge impact on me, how I live and how I see life. I was married previously, and my mother-in-law found out that I don’t have menstruation and a very small uterus and ovaries. She freaked out, she told me I cannot be part of their family, she told me I would have a divorce, because I cannot have babies. This is a huge pressure. I got a divorce, my ex-husband agreed; he wasn’t there for me, he went with his mother’s decision and this is unfortunately how women are seen in my country, whether you can have babies. Even healthy women cannot have babies sometimes and this causes huge problems in the family.
One friend told me ‘wow your body has the wisdom not to go along the path which all your ancestors did’.
My grandmother had 13 kids, the other 10 children. My mother, my aunts, all of them they went through the same scenario; and I am not saying it is bad, but somehow life took me away from that. I am exploring life in a way that none of the women before me, in my linage, could. They were all giving birth, bringing up the kids and giving birth. I have this amazing opportunity to do something else. I am 33, and at 33 I guess my grandmother had 6, or, 7, or 10 kids, my mother also and from the Soviet Union life; where everyone was the same. Women and men, they all work the same field, the same plants, there was no woman and man, everyone was the same. Because of this my mother and her sisters have very strong characters. For my mother, my life is complete nonsense, she doesn’t understand.
The doctors told me if I don’t take the hormones, I would develop osteoporosis and I already have it actually. They told me my life expectancy is short, they told me it will become tougher when I am older. But I read the side effects of the hormones and it is the same; either I would take the hormones and die, from the side effect of cancer or the bones and maybe I will figure out how to manage and develop the capacity to function in a way that my body wants. That is why I am doing yoga, specifically yin to support the bone structure. This brings a lot of worries to my family.