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Interview with Lia, a woman with Rokitansky Syndrome

Interview with Lia, a woman with Rokitansky Syndrome

March 30, 2024

Lia is a 31 year old woman from Brazil, with whom I maintain a good friendship. When he learned that he was beginning to collaborate writing articles in Psychology and Mind He immediately contacted me and asked me to talk about the Rokitansky syndrome and about his personal history.

Interview with Lia, a 31-year-old girl with Rokitansky Syndrome

She considers that, to be the most complicated and unknown genital disease that a woman can have, the media has not given her the dissemination they should. It is an invisible pathology, and proof of this is that most people have never heard of it. Lia wishes that society in general is informed about what she and many other women live day to day.

Before you start reading the interview and if you still do not know what Rokitansky Syndrome is about, I invite you to read this article :

"Rokitansky syndrome, women born without a vagina"

Hi, Lia. Tell me, why were you so eager to tell me your story?

It is something very unknown, every time I tell someone (there are not many people around me who know it) they look surprised, like you when I told you. Although there has been some diffusion in the media, I think it is important that you write it, so that it can reach more people and that more and more people know about this affectation.

You suffer the Rokitansky Syndrome. Could you summarize a bit in what consists?

The "Rokitansky girls" are born without a vagina. On the outside, the organ is normal, but behind the hymen there is no cavity like in the rest of women, we do not have a uterus or tubes.

How old were you when you were diagnosed?

Was 16 years old. I went to the gynecologist with my mother because menstruation did not come.

As was?

Upon exploring me, he realized that I did not have a vaginal canal. He examined the entire abdominal wall and saw that there was no uterus or tubes.

Did the gynecologist know what it was? I mean if he had met with some similar case.

That day he told us that he should study the case, with which I deduce that he did not. He sent me to do several exams and came back to visit me after a month. There I knew it was a "CIS woman

CIS woman?

Yes, it is a term widely used among us. It's like saying "normal women without a vagina". Normal, in the sense that we have both chromosomes x and ovaries.

I get it. And before going to the doctor, did you notice something strange, apart from the lack of menstruation? I mean, if you tried to be with some guy, for example.

No, I was only 16 years old and here in Brazil, a sexual relationship is very serious. What I had missed was that, with my boyfriend then, despite not having maintained full relations, we had rubbed with the genitals (petting) and I never lubriqué (years later I knew that non-lubrication is a common denominator among the Rokitansky girls). Even so, I did not attribute it to a problem of this kind, we were very young and we thought that we did not know or that we did not do something right, you know.

How was it for you to receive the news?

At the beginning you drop the world. Mainly because I love children, being a mother was my big dream; I assure you that I wanted to die, it was a horrible days of anguish. So that it was not so hard, the doctor called my mother two days before and she tried to prepare me emotionally, but there is no possible preparation, it was the biggest shock of my life.

What was your first reaction?

Reject my boyfriend. I saw a boy so perfect ... he wanted to start a family and I realized that I could not give it to him. I felt incomplete, defective. They were very difficult years.

What was the solution? I mean if they offered to undergo any surgical intervention.

Let's see, I did not operate until two years later. As I told you, this was in Brazil, 15 years ago; if now there is ignorance of the subject, imagine yourself at that moment. I did not know who to have surgery with and the doctor who diagnosed me confessed not feeling prepared to carry out the operation.

My first operation was with 18 years and everything went wrong, I almost died in the operation. In my opinion, the doctor did not know what he was doing; I pulled skin from my groin to try to make the channel with it. I had a hemorrhage.To make matters worse, he did not warn me that after the operation, dilators should be used, which, that new channel was closed immediately, remaining as before, but with a huge scar in the groin and others in the middle of the lips (to make the channel).

I imagine it was very hard, I have no words ...

So is. After that, it took three years until I decided to have surgery again. This doctor was much more qualified than the previous one, but he also did not know things. It did not go wrong at all, but I also do not feel completely satisfied with the result.

What was this second operation?

Basically he used a membrane of my intestine, to do with it the vaginal canal, remember the video that I sent you, in which the team of Iván Mañero operate a girl from Rokitansky? (//

If I remember

In that case they used the sigmoid; because with me it was a membrane, but otherwise it is the same. To me, the fact that they used the sigmoid scared me because I had heard that it can acquire an unpleasant odor, by depositions.

Think, on the other hand, that not all girls should have surgery. I had to do it my vagina was "blind bottom", that is, there was only one wall behind the hymen, no neck. There are girls who do have a conduit, although very small; to many of them, it is enough to do some exercises with dilators.

I get it

As you see, each case is different.

With this second operation, I believe that if you got a conduit vaginal, right?


Even so, you say that you are not entirely happy with the result, what is the problem?

When the doctor sewed the membrane, to attach it to the cavity, my clitoris moved and was lower than where it was. Fortunately, my nerves remained intact and I can feel pleasure in my relationships. On the other hand, one of the internal lips was a little smaller than the other, it looked ugly and defective and a few months later, I decided to intervene to extract both lips.

So, what bothers you the most about this new vagina is the appearance?

Yes, on the outside, it's a normal vagina. As soon as I open my legs, the clitoris is lower than normal, the scars and the absence of labia minora. As soon as it is possible for me to raise some money, I will return to surgery, and I hope that this time it will be the final one.

Could you explain to me what has been the most difficult for you in these years?

The main thing to know that could not have biological children. As I said before, it's the worst I have. Also the love and sexual relationships have been complicated for me; Imagine for a moment that you know someone, you fall in love, you start a relationship and he says something like "I imagine how beautiful our children will be". Surely you would not know when is the most appropriate time to tell you that you can not have biological children. Well that has happened to me in every relationship.

Have you ever felt rejected, because of the syndrome?

Just once. I started dating a guy and decided to tell him soon. He wanted to have his own children, so he broke up with me. It was hard but I understood it. I already tell you that normally I have been the one who has put barriers to relationships.

At this point in your life, do you feel better about it? Do you feel that you have overcome?

It is never completely overcome. I am currently happy, I have a partner who knows everything about me. He says that I must be proud of my scars, which represent my struggle and I must wear them "with honor". We are in love and we are very happy but I will always have the thorn of not being able to be a mother.

Have you ever considered adoption?

Adoption is the magic response that they sell us when they give us the news. I'm afraid it's not that simple; to adopt, in addition to having to wait an eternity, they make exams, interviews and tests worse than those of the FBI. You also have to have a lot of money, and that's not my case. Over the years, learn to be strong and to take it better.

What has helped you most in the process?

Mainly my mother. She paid for both operations; He came to sell his car to pay for them and has always supported me in everything. After her, my partner has been my other great pillar. At this moment, with my limitations, I can say that I feel happy.

Lia, I'm glad to hear this. Finally, do you want to tell me something that I do not I asked you?

No, I think this is all I had to tell you. I want to emphasize that the Rokitansky Syndrome should be better known. People should be more informed about it.

#EngageYourSenses – Women’s Stories of Adventure. Episode 5. Lia Ditton (March 2024).

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