She clutches her coffee cup tightly. "Please don't bring up the subject of children again," the Cologne native pleads inwardly. But it's already happened. Her colleagues are chatting animatedly at the lunch table about what their children have experienced at nursery. Sabine, her younger colleague, is currently pregnant and talks about her morning sickness. Linda smiles nicely and tries to behave inconspicuously - just don't attract attention. Too late. Miriam asks: "And you, Linda? Don't you want any children?" The question is right. Linda gets hot. "Yes, I do," she says quietly. "But it's not working out," she adds in a fragile voice. But that's only half the truth.
Diagnosis of MRKHS: 16-year-old Linda is shocked
What Linda doesn't want to tell you is that she suffers from MRKH syndrome. This means that she was born without a vagina. When Linda was 15 years old, she was the only one in her circle of friends who had not yet got her period. She was considered a late bloomer by her friends. Because she still hasn't had her period a year later, her mother takes her to the doctor. The gynecologist asked her lots of questions and finally told her that her period would come eventually. She just had to be patient.
Months later, they try to trigger her period with hormone tablets. But nothing happens. During a further examination, the gynecologist felt an extremely shortened vagina. While it is eight to twelve centimetres long in normally developed women, Linda's measures less than three centimetres. Where the tubular organ normally connects the external genitalia to the uterus, Linda's is just a hollow. The then 16-year-old and her mother were shocked.
And what exactly does this mean?
Linda is referred to a larger clinic nearby. There, an MRI scan provides clarity. The doctor on site explains to the 16-year-old that her vagina is not fully formed. "I remember not really realizing what the doctor was actually trying to tell me. When he told me that my vagina was almost non-existent, I thought: So what? Then mine is just a bit smaller than other women's," Linda remembers.
It was only when the doctor used a picture to show her that she was also missing her uterus that Linda slowly understood the implications of this diagnosis for her. "He told me that I was suffering from what is known as MRKH syndrome. That I would never be able to have children because of this malfunction in my body. And that I wouldn't be able to have sexual intercourse either." Linda is completely shocked. All her plans and wishes are suddenly wiped away.
It was as if a huge hurricane had turned everything upside down. Nothing was the way it used to be. I had only just turned 16 at the time, but I already had concrete ideas about my future. I wanted a husband and at least two children. And now none of that was possible?
Linda is struggling to come to terms with her diagnosis. Fearing that someone might find out that she has this deformity, she withdraws more and more. The question of what she is constantly preoccupies her. "I just didn't feel normal. What was I then? How could I be a woman without having the most important characteristic of a woman?" Linda panics at the thought of her friends finding out about her deformity.
A relationship is out of the question for Linda
A relationship with a boy is as good as out of the question for her. Every time a boy tries to approach her, she blocks it. "To make sure no one found out, I told my friends made-up stories about men I'd been sexually active with." Linda is almost relieved when her time at school comes to an end. After leaving school, she goes to Dortmund to train as a foreign language correspondent. There she hopes to build a new life for herself.
But the problems were still there. I was simply extremely insecure about my sexuality and my female identity. I didn't see myself as a woman - so how could other people, especially men, do that? And what were they supposed to do with me? I had nothing to offer them. And what man is going to stay with a woman who can't offer him sex?
Linda finally realizes that things can't go on like this. She visits a forum for MRKH sufferers. There she can talk to other women. It is only through them that Linda learns to deal with her deformity differently. She was also given the tip to talk to a psychologist about her problem. Her salvation! With the therapist, Linda tries to work through her deep-seated fears. And even if she finds it difficult, she makes progress. She also wants to see a clinic. Because she has learned that there are ways to surgically reshape the vagina. But the 34-year-old will probably never be able to have children.
Tips & info: What exactly is MRKHS?
Around 6,000 to 8,000 women in Germany suffer from the syndrome. What does it mean for them?
- What does MRKHS mean? Mayer-Rokitansky-Küster-Hauser syndrome only affects women. Those affected have no uterus and vagina, but usually have completely intact ovaries. The women are not genetically impaired and have female chromosomes.
- How often does it occur? One in 5,000 women worldwide has MRKHS. What causes it has not yet been researched. One thing is certain: The maldevelopment of the so-called Müller ducts occurs around the second month of pregnancy.
- What does this mean for the woman? A woman with MRKHS generally has no chance of ever having children of her own. In some countries (e.g. USA, Canada), affected women and their partners look for a surrogate mother - in Germany and almost all European countries, however, surrogacy is prohibited. There was a breakthrough at the end of 2014: for the first time in the world, a woman in Sweden gave birth to a child with a transplanted uterus.
Useful addresses:
- There is a center for rare genital malformations at the University Hospital in Tübingen. www.uni-frauenklinik-tuebingen.de
- Affected women can also find advice and help in Düsseldorf. www.uniklinik-duesseldorf.de