Rokitansky-Küstner Syndrome: I Was Born Without A Uterus

Health 2023

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Rokitansky-Küstner Syndrome: I Was Born Without A Uterus
Rokitansky-Küstner Syndrome: I Was Born Without A Uterus

Video: Rokitansky-Küstner Syndrome: I Was Born Without A Uterus

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Video: I Was Born Without a Uterus 2023, January

Complex construction "Rokitansky - Küstner - Mayer - Hauser syndrome" (MRKH) is a situation in which a woman is born with missing or underdeveloped genitals. Variants of the disease can be different: often with MRCh there is no uterus, and the vagina is shortened, although the vulva looks as usual; it happens that the syndrome affects the kidneys. In any case, women who are confronted with a diagnosis do not have menstruation. A woman cannot bear pregnancy on her own, but she can become the genetic mother of a child who is carried by a surrogate mother. The exact cause of the anomaly is unknown, and the syndrome itself occurs in about 1 in 4500 women. We spoke with one of them: Anna talked about life without menstruation and how the syndrome affected her sense of self.

Interview: Irina Kuzmicheva


Underdog woman

The onset of menstruation is a kind of initiation rite for many girls. At the age of eleven, I watched the film "An Animal Called Man" and began to wait for "that" day - after fourteen, however, I began to worry: all my classmates had periods, except me. In the book for girls, I read that if menstruation does not come until the age of seventeen, it is normal - but I was still worried and constantly asked my mother about her experience. Mom tried to avoid such conversations, so I turned to my friends: at first they willingly told me, but after a couple of years they began to avoid me, some even scoffed. It was a difficult period: quarrels with my parents, bullying at school, mood swings and thoughts that “something is wrong with me”.

When I was fifteen, my anxiety was transmitted to my mother and we went to the gynecologist. The doctor examined me and said that there was nothing wrong - you just need to do an ultrasound scan and take some pills. However, at the very first ultrasound, it turned out that I simply did not have a uterus. I was sent for additional examinations, I donated blood to study the karyotype - this is how they check if a person has genetic abnormalities. It turned out that I have a genetic disorder that can develop in the fetus around the third month of the mother's pregnancy - during this period the genitals are formed. It is impossible to detect it before birth.

Mom refused to give money

for an operation to enlarge the vagina, explaining that in the hospital I "will be considered a prostitute."

She forbade talking about the diagnosis

I went through, it seems, another million ultrasounds. When I was sixteen, at one of them the director of the genetic center, the luminary of science, saw a small uterus, but for accuracy I was sent for diagnostic laparoscopy. The operation is performed under general anesthesia, two incisions are made: under the navel and near the pelvic bone; special tubes with cameras are inserted into the incisions and they see what is inside. On the second day after the procedure, I was sitting in the doctor's office, there was no one close to me, and an elderly tired professor showed the results on the screen, monotonously describing what he saw. Laparoscopy confirmed that I still don't have a uterus - it just seemed to the luminary of science.

So I knew for sure: my fallopian tubes go into the abdominal cavity, the vagina is shortened - it can be surgically enlarged to a standard length, on average it is ten centimeters. At the same time, I have ovaries and they function as they should. I was diagnosed with Rokitansky-Kustner syndrome. The longer name (Rokitansky - Küstner - Mayer - Hauser) implies that the syndrome can manifest itself in different ways: apart from the uterus, for example, there may be no vagina at all, or there may be a uterus without a passage into the vagina.

All these details were explained to me again later. Then from the words of the professor, I remembered only one thing: I do not have a uterus and I can never get pregnant.The stitches on my stomach ached, despair covered with a wave - it seemed to me that I was "not a woman".

Let's talk at home

The next day, the doctors reported the diagnosis to my mother. She only said, “We’ll talk at home,” and left, leaving me for a few more days in the hospital to digest the information. The roommates claimed that I was "lucky": I do not recognize pain during menstruation, I will not have uterine fibroids, painful childbirth and other troubles, I can have as much sex as I want without the risk of getting pregnant. Subsequently, I have repeatedly heard this, while catching sympathetic glances on myself. For a long time I consoled myself with such "pluses", but to the end I did not come to terms with the fact that I would not experience some of these things.

Mom refused to give money for the operation to enlarge the vagina, explaining that in the hospital I would be "considered a prostitute." She forbade anyone to tell about the diagnosis - because of this, he began to seem like something shameful and difficult. We hardly discussed this anymore, especially with my father. I still told my friends, but a response like “you poor thing” only made me angry. And my boyfriend was even glad that we can finally have sex and I definitely won't get pregnant - teenagers seem to be cool with such things.

For a long time, I was lost when they discussed my period or PMS in front of me. I was afraid that someone would guess and shout "You are not a real woman!" or “open up” me because I can't share a pad or tampon with my friends. Over time, I learned to get out of such situations: I read a lot about menstruation, tried to pretend to be "normal". I convinced myself that because of this feature I do not completely belong to the world of women. I was thrown from one extreme to another: from a complete denial of the notorious "femininity" to exaggeratedly emphasizing it with high heels and miniskirts. I did not value myself, I got involved in toxic relationships. I think if my family had supported me, and not made me ashamed, everything would have turned out differently.



In everyday life, the Rokitansky-Kustner syndrome does not make itself felt in any way. I do not have menstruation, but the follicles mature, so there is still a semblance of a menstrual cycle - just without bleeding and pronounced PMS. It is difficult to track the cycle because it is irregular, but once a month I get swelling and enlargement of my breasts. I have never taken detailed tests for hormones - the doctors said that since nothing bothers me, I do not need to do anything on purpose - but those that I did, were normal. At the same time, there is not enough information, even on the Internet - I have never met a specialist who understands this syndrome.

Visiting gynecologists is a separate problem. During the first examinations, a medical council gathered around me, students were brought. It was terrible, I felt like a monkey in a zoo. My mother did not often go with me, so I experienced almost everything alone. One doctor, upon learning about the diagnosis, examined me for a long time in the gynecological chair, asked about my sensations and was surprised, they say, he had never seen such a thing. Another, during the examination, searched so hard for the cervix with the help of a gynecological mirror that I screamed in pain. She also prescribed me a set of tests, including an analysis for cervical cancer, which, of course, I cannot have - but I found out after he was taken and I paid for it.

During the first examinations, a medical council gathered around me, students were brought. It was terrible, I felt like a monkey

in zoo

Once I found a Russian-language forum for women with such a diagnosis - it became easier for me because I was not alone. I was impressed by the post of one woman: she is forty-seven years old, she is married for the third time, she has no children, lives for her own pleasure, travels and does not regret anything. I myself dream of creating a closed support group for women with Rokitansky-Kustner syndrome, so that together we can find the strength not to be ashamed of being different from others.

Without shame

The men I met and talked to about the syndrome reacted calmly. Some rejoiced at the opportunity to have sex at any time and without a condom: we were young, we were not talking about children. Since then, of course, I have learned more about the importance of barrier contraception and STIs. There were no problems with penetrative sex either. I realized that there was no need for an operation, only gynecologists complained about the length of the vagina. I read that with such a diagnosis it can be one and a half centimeters, mine - about seven. I confessed to my future husband almost immediately. He took the news calmly, only asked a couple of clarifying questions. He, like me, did not dream of children. I used to answer the questions of my relatives: “This is none of your business” or “I don’t want children”. But they don't come to me anymore - now I am surrounded by tactful people.

Last year, my husband and I came to a psychotherapist - it was important for us to figure out if we want children. The therapy helped me to realize and accept that I am a woman, regardless of whether I have a period. True, the shame went deep, so I continue to work with him. It was a revelation for my husband that I was experiencing hard things: he, like many, thought that I was easy on the diagnosis, because I try not to discuss this topic. Although there were different situations. For example, one day a close friend of mine said she was pregnant. I congratulated her and began to cry frantically. My husband and I were driving in the car, and he did not understand what had happened - and I was bursting with pain because I could never tell him “I’m pregnant,” I can never feel life inside me. That day I cried until evening.

Now I am thirty-one years old and I don’t know if I want children. I have the financial and medical opportunity to become a mother, but I am in no hurry. Perhaps I will freeze the embryos from my eggs in case I change my mind. The uterus transplant operation was done successfully only once in Germany, so surrogacy is my option. I didn't think about adoption, because I'm still not generally sure if I'm ready for children - I just want to understand what the options are.


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