Interview with Lia, a woman with Rokitansky Syndrome

What do women with Rokitansky Syndrome feel? Lía explains it to us.

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

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

She considers that, for being the most complicated and unknown genital disease that a woman can have, the media has not given it the diffusion it 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 by day.

Before you start reading the interview and if you still don't know what Rokitansky Syndrome is all about, I invite you to read this article, 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 it to someone (not many people around me know about it) they look surprised, like you when I told it to you. Although there has been some diffusion in the media, I think it is important that you write about it, so that it can reach more people and that more and more people know about this condition.

You suffer from Rokitansky Syndrome, could you summarize a little bit what it is? what it consists of?

We "Rokitansky's girls" are born without a vagina. 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 gynecologist with my mother because I couldn't get my period.

How did it go?

When he examined me, he realized that I had no 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 all about? I mean, had he come across any similar similar case.

That day he told us that he had to study the case, so I deduce that he had not. He sent me for several tests and visited me again after a month. That's when I knew I was a "CIS woman”

CIS woman?

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

I understand. And before going to the doctor, had you noticed anything unusual, other than the lack of menstruation? lack of menstruation? I mean, had you tried to be with a guy, for example? for example.

No, I was only 16 years old and here in Brazil a sexual relationship is something very serious. What I had missed was that, with my boyfriend at the time, even though we had not had full relations, we had done rubbing with our genitals (petting) and I never lubricated (years later I learned that non-lubrication is a common denominator among Rokitansky girls). Still, I didn't put it down to such a problem, we were very young and thought we didn't know or didn't do something right, you know.

What was it like for you to get the news?

At first your world falls apart. Mainly because I adore children, being a mother was my big dream; I assure you I wanted to die, it was a few days of horrible anguish. So that it wouldn't be so hard, the doctor called my mother two days before and she tried to prepare me emotionally, but there is no preparation possible, it was the biggest blow of my life.

What was your first reaction?

To reject my boyfriend. I saw him as such a perfect boy...he wanted to start a family and I realized that 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 you surgery?

Well, I didn't have surgery until two years later. As I told you, this was in Brazil, 15 years ago; if now there is a lack of knowledge on the subject, imagine at that time. I did not know with whom to have the surgery and the doctor who diagnosed me confessed he did not feel prepared to perform the operation.

My first operation was when I was 18 years old and everything went wrong, I almost died during the operation. In my opinion, the doctor did not 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 did not warn me that after the operation, dilators must be used, so that new channel was closed immediately, remaining as it was before, but with a huge scar in the groin and others in the middle of the labia (to make the channel).

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

That's how it is. After that, three years passed until I decided to have another operation. This doctor was much more qualified than the previous one, but he also did not know things. It didn't go badly at all, but I don't feel completely satisfied with the result either.

What did this second operation consist of?

Basically he used a membrane from my intestine, to make the vaginal canal with it. Do you remember the video I sent you, in which Ivan Mañero's team operated on a girl from Rokitansky? (https://www.youtube.com/watch?v=GtAFlrou6dk)

Yes, I remember

In that case they used the sigmoidI had 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 odor, because of the stool.

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

I understand

As you can see, each case is different.

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

Yes

Still, you say you're not entirely happy with the result, what's the problem? the problem?

When the doctor sewed the membrane, to attach it to the cavity, my clitoris was displaced and was lower than it was. Fortunately, my nerves remained intact and I can feel pleasure in my relations. On the other hand, one of the inner labia remained a little smaller than the other, it looked ugly and defective and a few months later, I decided to intervene to remove both labia.

So, what bothers you most about this new vagina is the way it looks?

Yes, on the outside, it is a normal vagina. As soon as I open my legs, you notice the lower than normal clitoris, the scars and the absence of labia minora. 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 thing for you during these years?

The main thing, knowing that I would not be able to have Biological children. As I said before, that's the worst thing. Love and sexual relationships have also been complicated for me; imagine for a moment that you meet someone, fall in love, start a relationship and he says something like "I imagine how beautiful our children will be". You probably wouldn't know when is the most appropriate time to tell him that you won't be able to have biological children. Well, that's happened to me in every relationship.

Have you ever felt rejected because of the syndrome?

Only once. I started dating a guy and decided to tell him early on. He wanted to have his own children, so he broke up with me. It was hard but I understood. I tell you, I've usually been the one putting up barriers to relationships.

At this point in your life, do you feel better about it? Do you feel that you've over it?

You never completely get over it. I am currently happy, I have a partner who knows everything about me. He says I should be proud of my scars, that they 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 thorn of not having been able to be 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, besides having to wait forever, you have to go through exams, interviews and tests worse than those of the FBI. You also have to have a lot of money, which is not my case. Over the years, I have learned to be strong and to cope better.

What has helped you the most in the process?

Mainly 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 great pillar. At this moment, with my limitations, I can say that I feel happy.

Lia, I am glad to hear this. Finally, do you want to tell me something I haven't asked you?asked you?

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