Rare Syndrome - The gynecologist said that I don't have a vagina or womb
In the ninth grade, I had the feeling for the first time that I was different from my same-aged girls. Most of them had already experienced their period and exchanged sanitary pads at the school toilet. I was confused and wanted to join in, so I asked my Mother about the timing of her first period. She must have sensed that the topic troubled me, as she took me to a gynecologist not long after. After the first examination, I hoped for a reassuring message like: "Be patient, your period will come soon." Instead, the gynecologist told me that she couldn't examine me properly. She suspected that my hymen might be closed. Then she referred me to a colleague who was supposed to pierce it.
This minor procedure was scheduled to take place a few days later. The colleague, an older man, seemed quite overwhelmed during the treatment. At the end, he produced an ultrasound image and asked my mother to wait outside with him. I was completely taken aback. Since the topic concerned my body, I wanted them to speak with me instead of just about me. My mother insisted on a three-way conversation. So, the gynecologist then told us both rather nervously and in medical terms: "I cannot pierce the hymen because there isn't one. And there is no vagina or Uterus."
No Vagina: The Diagnosis was a Shock
This means that I had neither a hymen nor a uterus. Instead of the ten centimeter long vaginal canal, there was only a small depression present. I was shocked. I didn't fully understand it at that moment. With these few pieces of information, my mother and I were referred to the nearest university clinic. There, the medical term for what was discovered in me was introduced for the first time: The Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH), a rare congenital condition affecting approximately one in 5000 women. At the university clinic, we were advised to continue our treatment in a specialized clinic in Tübingen.
I remember the first consultation at that clinic vividly. The doctor was incredibly nice and the first person to speak to me on an equal footing. With the help of a diagram, she explained what was different about my body: Externally, my genitals looked unremarkable. My ovaries were intact, but my vagina and uterus were absent. While the doctor spoke, I began to understand for the first time what this meant for my life. In order to have penetrative sex, I would have to undergo a complex operation and a long follow-up treatment. Without a uterus, I would not be able to carry my own children.
Should I undergo the operation?
The doctor recommended the so-called Vecchietti procedure. This can be imagined as follows: A spanning apparatus is attached to the abdomen. A rectangular device, about twice the size of a smartphone. At the site where the vaginal opening would later develop, a so-called dilation rod is also placed. It looks roughly like a large olive pit. The two apparatuses are connected inside the abdomen by two robust threads. These threads are pulled daily. The tension causes the dilation rod to press into the later vaginal tunnel. Thus, through the daily tension, the vagina eventually forms.
The treatment is extensive and painful. For a week, one lies on the Intensive Care Unit, unable to stand and fed through a tube. Despite this, I agreed immediately when the doctor asked if I would undergo surgery. At least in regards to sex, I wanted to feel a little more normal. So we arranged a appointment right away. As we left the clinic after the consultation, tears came to my eyes. Overwhelmed, but also because the pressure of the past weeks was finally lifting off me. I realized in that moment how alone I had felt since the first examination with my Diagnosis. In the special clinic, at least, they now knew what was wrong with me.
I hardly told anyone what was wrong with me
The surgery took place a few weeks later, just before the summer holidays. I found it uncomfortable to talk to others about my genitals. I opened up to my family, my then boyfriend, and my best friend in earnest. With others, I remained vague. I usually just said that I would be away over the summer. I could also easily put the thought of what was coming up out of my mind until the day before the operation. The evening before the surgery, I was quite nervous. I had to drink a bottle of laxative in preparation for the anesthesia. The smell alone made me feel sick. In that moment, doubts crept in. I thought about how I could avoid all this suffering if I just didn't drink the laxative. In the end, I drank it anyway.
The next morning, things went quite quickly. A visit, a short conversation with both doctors, some encouraging words from the nurses, and I was pushed towards the operating room. Until the door of the operating area, I still felt my parents' hands on my shoulders. Then I was put under anesthesia and received a spinal block.
Feeling like a foreign body in my stomach
As I woke up from the anesthesia, I felt just as helpless as one would expect with a foreign body in their stomach: terrible helpless. For a week, my only escape was sleeping. And I did a lot of it. With the help of a lot of painkillers, so much that I only have fragmented memories of the week on the Intensive Care Unit. In my mind, individual images appear when I think about it: My hair, sticking to my forehead with sweat. The grinding noise of the suction apparatus pulling the threads in my stomach. The hellish pains. But there are also nice images: My mother, who read to me, a nurse who brought me photos of her horse because she knew how much I love horses, and the doctor, who came to my bed regularly with encouraging words.
After a week that felt both endless and too short at the same time, the apparatus was removed from me through another operation. I was able to stand up for the first time after that. In those seven days, I had lost ten kilos, most of which was my entire leg muscle. I had to learn how to walk again. After that, the second phase of treatment began. For six months, I had to carry a phantom inside me to prevent the opening from growing back. I still have images in my head from that time: me sitting on a sterile hospital toilet in cold neon light, washing the plastic phantom, which looks like a kind of rounded vibrator, after every toilet visit, drying it on towels, creaming it and inserting it back into an open wound. My legs, which were wobbly like pudding. And the burning pains, which were barely bearable and grew worse the more I tensed up.
Will sex always be painful?
Six months later, the wound had finally healed and the treatment was over. During my time in the hospital, I often thought about what the operation would mean for my sexuality. I wondered if sex would always be painful for me and if it would feel different from other women. I also wondered if I would be rejected because of it.
The fear that sex would be painful for me passed quickly. The fear of rejection, however, accompanied me for many years. Whenever I met a new man, I asked myself the same questions: Should I tell him before sex? Could he notice it otherwise? When should I tell him then? Was I ruining the mood? After sex, I worried that the men might not mention anything out of politeness or because they didn't want to hurt me. Although my family is open and tolerant, I had grown up with the idea that a woman has a vagina into which the man's penis fits.
I also thought secretly that all men eventually want to reproduce and that I would therefore be left alone sooner or later. And so, I found a way to deal with it thanks to the early diagnosis, but it was long difficult for me to imagine that there were loving men who felt the same way. For a while, I even wondered if I was less of a woman because of the syndrome.
I had to learn to accept myself
Today, I no longer ask myself those questions. The thoughts from back then shock me. I had to learn to accept myself, with all that I have and all that I don't have. It helped me that society has developed in the past few years and that there is more awareness that gender is not dependent on the appearance of genitals. I would undergo the operation again today, but I also know that sex and intimacy are much more than just penetration. Back then, it was hardly imaginable for me that there could be a form of relationship that could function without the classic image of sex.
I live well with my diagnosis today. I am happy, have a great relationship and super friendships. At times, fear of being alone in old age comes over me. But I know that even children cannot protect me from that. And I still learn to know myself and my body better every day. Only in recent years have I started to be interested in my cycle. I have it, namely, even without bleeding. If I could speak to my 14-year-old self today, I would say: "You don't have to be afraid. You are good just the way you are and uncertainties are normal, whether with MRKH-Syndrome or without."
*Name changed
After the university clinic diagnosis, I was referred to a specialist clinic for further consultation and treatment. The specialist explained that I had an absence of my vagina and uterus, which is a rare condition known as Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH). Later, during the treatment, I expressed concerns about the pain and potential rejection due to my condition. The specialist reassured me, explaining that sex and intimacy are more than just penetration, and encouraged me to learn to accept myself.
During the treatment, I had to use a phantom device to prevent the vaginal opening from closing. This process was challenging, as I had to insert the device after every toilet visit and apply cream to prevent infection. Despite the difficulties, I remained determined and completed the six-month treatment successfully. Afterward, I experienced relief and regained my confidence, knowing that I was no less of a woman despite the diagnosis.
