It affects one in 4,5 thousand. women and in most cases is asymptomatic until adolescence. Mayer-Rokitansky-Küster-Hauser syndrome – a congenital absence or underdevelopment of the uterus and vagina – sounds like a judgment, but it doesn’t have to be. Why being a “seedless” woman is not a tragedy in life tells Zuzanna Piontke, the founder of the “Bezestkowe” project, which aims to support women with the MRKH team.
In the photo: Zuzanna Piontke
- MRKH syndrome is a congenital absence or underdevelopment of the uterus and vagina
- Zuzanna Piontke runs a project that supports women with this condition. I want to educate and make others aware of MRKH
- – For me, the most difficult stage was the rejection, because I suppressed the diagnosis for a long time. At school, during PE lessons, I pretended that I was indisposed to fit in. I didn’t want to talk about it – he says
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Paulina Wójtowicz, MedTvoiLokony: Six years ago you heard a diagnosis that changed your life.
Zuzanna Piontke: Yes, it felt as if my mind had moved away from my body a little, as if I was standing next to myself. But I thought it was definitely nothing and decided to get some information from the network. I believed that they would be more digestible than medical knowledge. It was a mistake. I read that “I suffer from the syndrome of female tragedy”. It turned out that the Internet knows more about me and my future, and better than I do, that it condemns me to something terrible. When you are 18 and read something like that, it is a nightmare, especially when you function in an environment where you talk a lot about the body, being in an intimate relationship with another person. This situation meant that for another year I did not want to talk to anyone about it, I was hiding my problem.
You didn’t know about her for a long time. You grew up in a similar way to your friends. Only one thing was missing – menstruation. When did you start to worry about not having your periods yet?
I remember when for one lesson – still in elementary school – a lady came to us who told us how to prepare for the first menstruation. I was the girl who was prepared for this moment – I had a small security kit in my backpack and I always thought that day would be today. I didn’t worry about it for a long time, because in my family women started to menstruate quite late, so I calmly waited for my time.
MRKH syndrome is the second most common cause of primary amenorrhea. Meanwhile, you waited for the diagnosis for almost three years. Why?
I went to the gynecologist for the first time when I was 16 years old. The doctor performed a transabdominal ultrasound and noticed a cyst on the ovary, which she said may be the reason I am not menstruating. Later there was a problem with the thyroid gland which could also be a hindrance. At that time, I was still at the stage of anticipation and relative peace. There are some adversities, therefore menstruation is delayed, but I am able to deal with it pharmacologically.
The first visit to the gynecologist is an event for every woman, often associated with fear and shame. You went on it with a problem and a lot of questions in your head. Meanwhile, no one has even subjected you to a classic examination on a gynecological chair.
Yes. The second gynecologist I went to did not examine me in this way until after a year of hormone treatment, when I still did not have a period. Earlier I heard that I am too young and this examination is not necessary.
It worked the third time. You found a specialist who not only knew the subject, but also had patients with MRKH syndrome. You have learned that one of the methods of treatment is to restore the vagina – either surgically or with the help of special dilators. What option was offered to you?
The doctor tried to avoid surgery because in her opinion it was not necessary in my case. I had a vaginal recess, so there was a good chance of stretching its walls with dilators. I was about to consider this option.
The choice of treatment is a very individual matter. Often times, surgery is the only option, but that doesn’t mean the woman has to choose it. He’s doing it for himself. You have to talk about it, because women with MRKH syndrome still hear from doctors that it is worth undertaking enlargement only if they have a permanent partner, of course – a man. Meanwhile, it is important that the person who decides to do so knows what they want and that they do it for their own pleasure, not someone else’s.
But you didn’t get treatment right away.
All because I’ve read too many stigmatizing things about the band. It took a year for me to digest everything and make a decision that I should and want to be treated. It was a process, I was getting ready for it. In the end, I figured I’d give it a try. If it doesn’t work hard, I’ll stop, but at least I’ll try.
Were you scared
A bit like that. I was afraid that I would do something wrong, that it would take a long time, that it would interfere with my body too much. Fortunately, the attending physician reacted to my decision very positively. It lifted me up a lot. I realized that I needed someone to walk me through this by the hand.
How long does this treatment take?
It is an individual matter again, it depends on commitment and regularity. On average, it takes several months for extensions, but this may take longer. I managed to achieve my goal after six months. However, it must be remembered that just as the vagina can stretch, it can also shrink. That is why you have to repeat the exercises – not as often as in the beginning, but regularity is very important here.
In the context of the MRKH team, a lot is said about obstacles to fulfillment in two areas. One of them is sexuality. Logic dictates: there are no reproductive organs, there is no sexual intercourse. Meanwhile, it is not quite so.
Exactly. I always emphasize this: there are different types of sex. Not all of us need and want to expand the vagina in order to get satisfaction from the rapprochement. But it’s true that sexuality raises a lot of emotions. For example, the question is often asked what is the right moment to tell the other person about the disease. Doubts arise: will the partner recognize the difference, will realize that the vagina has been worked out. Today – after many conversations with women with MRKH syndrome who have an active and successful sex life – we know that no, there is no difference.
The second taboo is motherhood of women with MRKH syndrome, which does not exclude being a mother. Adoption is available in Poland, in other countries also using the support of a surrogate, and even a uterine transplant.
When it comes to uterine transplantation, such operations are actually performed in the world, and in Europe we are closest to Sweden, where this is done by an excellent team of specialists. So far, there have been about ten such transplants. However, it must be remembered that such a procedure is very complicated.
In Poland, however, adoption is available and I really know the girls who have decided to adopt it and are very happy. Being a mom doesn’t have to mean getting pregnant. You can fulfill yourself in motherhood in a different way.
Although reproductive organ defects are congenital, women with MRKH syndrome feel as if they have lost something important after receiving a diagnosis. They feel a real loss. Are they going through some kind of mourning?
Yes, they may feel a loss, but this is individual and not always the case; we write about it on our website [Bezpestkowe.pl – editor’s note ed.]. Each of us has passed this process in a more or less precise way or is at one of its stages. It is a great experience when you hear that you do not have something that is very important for you, for a woman in general. For me, the most difficult stage was the rejection, because I suppressed the diagnosis for a long time. At school, during PE lessons, I pretended that I was indisposed to fit in. I didn’t want to talk about it, I was sweeping the problem under the rug, pretending I could handle it.
How do men react to the news that you are living with MRKH?
That’s the whole spectrum of reactions. Some men, but also people in general, react with surprise, sometimes even indignation, that how can I talk about something so intimate in public. Others, on the contrary – congratulate you, emphasize that it is very good that I share it, they give me space to talk about it. Still others are somewhere in the middle – it’s nice that you talk about it out loud, but we don’t have to talk about it. There is a large group of men who support me in all this, help me reach people with reliable information about the MRKH team, create graphics for social media, program the website, and review texts. I am happy to hear my friends share their knowledge with each other and with others. It proves to me that my work is effective, that it works. This is my greatest achievement.
And the women? They show greater understanding because they are also women and can identify with the problem?
It is a very individual matter and strongly depends on the bubble in which you live, the approach to corporeality, sexuality, how you think about building the future, structures in the family. And with this it is very different.
It may seem that a woman will understand the other woman better, because she is a woman, but it was from the girls that a large part of the voices came from that I should not speak publicly about my story. More than once I have met with compassion, even pity, on their part. Overall, I do not think that the approach to the subject is gender specific. Rather, it’s a question of how we view the other person and how we respect them.
In 2018, you decided to come out of a kind – you told your story to the world. Why?
Because my healing process was very quick, which was a huge surprise for me. I didn’t expect it because there were moments – often not days but weeks – when I really couldn’t look at the set of extensions anymore. My friends looked after me very much then. Over time, I developed a special ritual: I always did it in the bathtub, on my favorite series, when I was happy. Thanks to this, dilation ceased to be a traumatic event and began to be completely absorbable.
But it was hard at times. One day I went to my gynecologist for a checkup. At that time, I was studying in Szczecin, and the doctor’s office was in Gdańsk. On the way, I thought: man, I practiced so little, it is definitely worse, I will have to come back here, I don’t know how many times. During the visit, the doctor looked at me and said: “Mrs. Zuzanna, you don’t need me anymore”. It was a shock. I didn’t know it would go so smoothly. After I left, I called my dad and all the friends involved. Suddenly I felt light. I couldn’t understand that I believed the nonsense I was reading on the internet, that I was so afraid of the treatment that it took so long to diagnose, while the treatment was completed in six months.
I felt an impulse that I couldn’t let a certain Zuzia be there, who feels as bad as I did then and doesn’t know who to talk to about it, what to do, where to report.
That’s why you started a support group for women living with MRKH syndrome two years ago. Why did you call her “Seedless”?
The MRKH team sounds strange and says little about the crux of the problem. I was looking for a name that would be more digestible, easier to talk about the disease, and help to tame it. As I thought about it, I noticed that art often portrays fruit. I started to wonder what is the difference between a fruit with a stone and a fruit without it. I haven’t found any. Thought that was a good analogy. I wanted our logo to illustrate this idea, to show that the fruits are different, just as we are different, that we have no stone in common and that it is ok.
«Seedless» is more than just a support group. This is a project whose mission – as you write on the website – is to make the public aware of MRKH. What exactly do you want to convey?
That having reproductive organs is not the most important thing, and that the main function of a woman is not the reproductive function. Seeds have functioning ovaries and the endocrine system, thanks to which we have a menstrual cycle, but there is no menstruation due to the lack of a uterus – some women have a stone, others do not. Besides, there is such a thing as a differentiated sexual development, not every woman has to menstruate.
It is also important that we do not need to talk about our intimacy. We can talk about it, we can not talk about it, we can only say as much as we want and leave the rest to ourselves – and that’s all right.
I also want the reliable knowledge about the MRKH team to reach specialists, gynecologists, because they are the first source of information for women diagnosed with the syndrome. A lot depends on their approach, but also on the words they say. I would like the patient not to hear during the first visit: “You will not have periods, you will not have a baby, you will not be able to have vaginal intercourse”. So that instead of “banning” everything, it was explained to her that there are other methods, other options, that it can be different and this is also ok.
Among the dozens of MRKH descriptions that can be found on the Internet, information about deficiencies dominates – lack of menstruation, no or significant difficulty in sexual relations, the inability to get pregnant – that is, what the MRKH team takes to a woman. What does it give? What did he give you?
All that happened gave me a lot of confidence and allowed me to get used to my own body. It was very important to me. The MRKH team is also a great rapporteur. When this topic comes up in a conversation and someone can’t, won’t or won’t accept it, you know that you won’t build a relationship with them. After all, this is a part of you that you cannot erase or correct. But you don’t have to explain yourself to it either. In addition, living with MRKH is of great importance in shaping self-awareness, it allows you to redefine certain categories, such as femininity, to find yourself in them.
Did you find
Yes. I feel like a self-aware person who knows my body, my emotions and what’s in her head.
This may interest you:
- The best sex begins with the words: “Yes, I want it, don’t stop!”
- At the gynecologist she heard: «What do you need your baby for? You can’t do it »
- What do Polish women hear from gynecologists? «You saved money on a condom», «your breasts are too small»
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