Lía is a 31-year-old woman from Brazil, with whom I have a good friendship. When she heard that I was starting to collaborate by writing articles in Psychology and Mind , she immediately contacted me and asked me to talk about Rokitansky Syndrome and her personal history.

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

She believes that, as the most complicated and unknown genital disease that a woman can have, the media have not given it the coverage that it should have. It is an invisible pathology, and proof of this is that most people have never heard of it. Lía wants society in general to be informed about what she and many other women experience on a daily basis.

Before starting to read the interview and if you still don’t know well what Rokitansky’s syndrome is about, I invite you to read this article :

“Rokitansky syndrome, women born without vaginas”

Hi Lia. Tell me, why did you want to tell me your story so badly?

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

You suffer from Rokitansky Syndrome. Could you summarize for me what is?

Rokitansky’s girls are born without vaginas. On the outside, the organ is normal, but behind the hymen there is no cavity as in other women, we have no uterus or tubes.

How old were you when you were diagnosed?

I was 16 years old. I went to the gynaecologist with my mother because I wasn’t getting my period.

How was it?

When she scanned me, she realized she didn’t have a vaginal canal. He did an examination of the entire abdominal wall and saw that there was no uterus or tubes.

Did the gynecologist know what it was about? I mean had he come across any similar cases?

He told us that day that he should study the case, from which I deduce that he did not. He sent me to take several exams and came back to visit me after a month. That’s when I knew I was a ” CIS woman “

CIS woman?

Yes, it’s a term that’s used a lot among us. It’s like saying “normal women without vaginas.” Normal, in the sense that we have both chromosomes x and ovaries.

I understand. And before going to the doctor, had you noticed anything strange, apart from the lack of menstruation? I mean had you tried to be with a boy, for example .

No, I was only 16 and here in Brazil a sexual relationship is a very serious thing. What had surprised me was that, with my boyfriend at the time, despite not having full relations, we had rubbed our genitals ( petting ) and I never lubricious (years later I learned that non-lubricity is a common denominator among Rokitansky’s girls). Still, I didn’t put it down to a problem like that, we were very young and thought we didn’t know or didn’t do something right, you know.

How was it for you to receive the news?

At first you drop the world. Mainly because I love children, being a mother was my great dream; I assure you that I wanted to die, they were a few days of horrible anguish. To make it easier, the doctor called my mother two days before and she tried to prepare me emotionally, but no preparation is possible, it was the biggest blow of my life.

What was your first reaction?

Reject my boyfriend. I saw such a perfect guy… he wanted to start a family and I realized I couldn’t give it to him. I felt incomplete, defective. It was a very difficult few years.

What was the solution? I mean, did they offer to perform surgery on you?

Let’s see, I didn’t have the surgery until two years later. As I told you, this was in Brazil, 15 years ago; if there is no knowledge of the subject now, imagine at that time. I didn’t know who to operate on, and the doctor who diagnosed me confessed that he didn’t feel ready to perform the operation.

My first operation was when I was 18 and everything went wrong, I almost died in the operation. In my opinion, the doctor didn’t know what he was doing; he took skin from my groin to try to make the canal with it. I had a hemorrhage. To make matters worse, he didn’t warn me that after the operation, they should use some dilators, so that new canal was closed right away, remaining as it was before, but with a huge scar in the groin and others in the middle of the lips (to make the canal).

I guess it was hard, I have no words…

That’s right. After that, it was three years before I decided to have another surgery. This doctor was much more qualified than the previous one, but he was also unaware of things. It didn’t go badly at all, but I’m not completely satisfied with the result either.

What did this second operation consist of?

He basically used a membrane from my intestine, to make the vaginal canal with it, remember the video I sent you, where Ivan Mañero’s team operates on a Rokitansky girl? (https://www.youtube.com/watch?v=GtAFlrou6dk)

Yes, I remember

In that case they used the sigmoid ; because with me it was a membrane, but otherwise it’s the same. For me, the fact that they used the sigmoid was scary because I had heard that it can acquire an unpleasant smell, because of the stools.

He thinks, on the other hand, that not all girls should have surgery. I had to do it my vagina was “blind-bottomed”, that is, there was only one wall behind the hymen, no neck. There are girls who do have a duct, albeit a very small one; for many of them it is enough to do some exercises with dilators.

I understand

As you can see, every case is different.

With this second operation, I think I understand that if you got a vaginal duct, right?

Yes

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

When the doctor stitched the membrane, to attach it to the cavity, my clitoris shifted 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 inner lips was a little smaller than the other, it looked ugly and defective and a few months later, I decided to intervene to remove both lips.

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

Yeah, 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 are noticeable. As soon as I am able to raise some money, I will have another operation, and I hope that this time it will be the definitive one.

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

The main thing to know is that I couldn’t have biological children. As I said before, that’s the worst part of it. Love and sexual relationships have also been complicated for me; imagine for a moment that you meet someone, you fall in love, you start a relationship and he tells you something like “I imagine how beautiful our children will be”. You probably wouldn’t know when the time is right to tell him that you can’t have biological children. Well, that’s 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 kids of his own, so he broke up with me. It was hard but I understood. I’m telling you, I’m usually the one who puts up barriers to relationships.

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

You never quite get over it. I’m happy now, I have a partner who knows everything about me. He says I should be proud of my scars, which represent my struggle, and I should wear them “with honor. We are in love and we are very happy but I will always have the feeling that I could not have been a mother.

Have you ever considered adoption?

Adoption is the magic answer 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 forever, you get tested, interviewed and tested worse than the FBI. You also have to have a lot of money, and that’s not the case with me. Over the years, you learn to be strong and to cope better.

What has helped you most in the process?

Mostly my mother. She paid for both operations; she even sold her car to pay for them and has always supported me in everything. After her, my partner has been my other big pillar. At this moment, with my limitations, I can say that I am happy.

Lia, I’m glad to hear this. Finally, do you want to tell me something that I didn’t ask you?

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