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Ayse Arman – A woman who doesn't have a Vagina (Vaginal Agenesis)

Ayşe Arman - Vajinası olmayan kadın (Vajinal Agenezi)

Wednesday, 04.05.2016

What? She doesn’t have a Vagina? How it is possible?

It is possible, and she is sitting in front of me.

It seems weird, but at the same time, it is not. It is a rare occasion, but not the rarest. Every 1 out of 5000 baby girl is born without a vagina and uterus. It is a birth defect. But because of Social Oppression, it is usually kept as a secret. Because the vagina and uterus are perceived as the fundamentals of femininity. Without them, you are not a woman!

Selma K. is a modern, well-educated woman on her 30’s. She and her husband are both doctors and they are living in Antalya. She just had surgery, and Prof. Fatih Sendag created a Vagina for her.

I met her in Istanbul when she came here for a post-operation check. She agreed to talk with me to give hope and courage to women who feel “less” and “a failure”, because of the social oppression.

Eventually, it is a dysfunction like a dysfunctional heart valve which is also a birth defect.

Selma K. wants to tell them “ You are not alone ! “. She also wants to tell them that there is a solution to this. Let’s hear her out.

Vajinasi olmayan kadin

When did you first realize that you are different?

- I was a boarding student at science high school, I was 15 and I've never had my menstrual cycle, despite my all other friends. Then I said to myself, “ Something is wrong with me!”

Did you go to a doctor?

- Yes. I had an ultrasound, and the doctor said: “I can’t see your uterus!” Then, I had an MRI. My father and mother explained the situation to me. They said, “ You don’t have a Uterus, but it is not a problem.” They were compassionate and protective. But I understand the severity of the situation.

You didn't have a Uterus too?

- Yes.

How did you feel?

- Bad. I didn’t want to talk about it. I was different from other girls and I kept this as a secret.

Is it a disease?

- No, it’s not. It is a birth defect. It is called the Mayer–Rokitansky–Küster–Hauser syndrome (MRKH), which happens in the mother’s womb, when the 2/3 of the reproductive organs ( fallopian tubes, uterus, and vagina) didn’t develop properly as it should.

What is the cause?

- It is unknown. Genetic and environmental factors are held responsible. It affects every 1 woman out of 5,000. If we adapt this to the population of Turkey, there must be at least 7,500 women who have this syndrome.

So, it is not so “rare”…

- Yes, but nobody talks about it because of social oppression. I felt so alone. A woman who is unable to have a baby is taboo in our country. Even though I didn't feel that less of a woman, society thinks that way.

Did you mention it to your friends?

- I had to mention some of them. I was a boarding student, and they were aware that I am not having my menstrual cycles. They were shocked.  They tried not to show it, but they always pitied me!

Did you start to think that you won't be able to have a normal life?

- Of course. I never had a chance to dream of a marriage or a dream of having a child.

How did you decide to become a doctor?

- My father encouraged me. I think my father thought that, if I study medicine, it will be easier for me to achieve information about my condition and a possible cure.

And after that?

- Then I met my future husband in medical school. He was a good friend of mine with a strong character, trustworthy, funny and smart. But he was only a friend to me. Then suddenly, he told me that he loves me. I was devastated. I didn’t know what to do. He told me he was in love with me, and he was ready to share his life with me. But I had no uterus or a vagina. I started to become introverted and he realized that I am keeping a secret from him. He started to ask questions.

What happened next?

- I had to explain the situation to him. Actually, I just told him the name of the syndrome that I have. There was a silent moment briefly. And all of a sudden, he told me “ is that what you kept from me for weeks? It doesn't matter for me, I love you unconditionally.” And on top of that, he proposed to me. I was shocked and surprised. He was afraid of I might say no because I might never have any children or have sex with him, ever. But I said yes. He was a gift from god.

What if he wasn't a doctor too?

- Because he was studying medicine, he was able to understand the situation. But it doesn't matter if he had another profession, we love each other unconditionally.

Outside of our country, people who suffered from this situation can find each other easily, but why in our country it is not possible?

- Unfortunately, it is not possible to easily talk about this condition in our country. No matter how comfortable you are with this, it is not possible to communicate from others who suffered the same condition. In other countries, you can use the internet or support groups to find other women like you. You can easily find them just by searching the syndrome on the internet. In our country, this situation is taboo. Nobody wants to be stigmatized with this syndrome.

How did you manage to find a doctor who can help you in Turkey?

- First, we learned the medical name of the surgery. After that, we started to search scientific articles and we come up with the name of Prof. Fatih Sendag. We learned that he had successfully done this surgery before. We send a message to him and we started to plan the surgery.

Did you get a vagina?

- Yes, my natural vagina has a very limited length. With the surgery, it is reshaped and it became a fully functional organ.

“ I said, I have no vagina and he said he loves me unconditionally.”

Thursday, 05.05.2016

Our interview with Selma K. continues. She agreed to talk with me to give hope and courage to women who suffer from the same condition she has. Selma K. is a modern, well-educated woman on her 30’s. She and her husband are both doctors and they are living in Antalya. She suffers from a condition called the Mayer–Rokitansky–Küster–Hauser syndrome (MRKH). She has no uterus or vagina since her birth. She had a surgery 2 months ago, and now she has a vagina.

What is your status now? Are you fully cured?

- The treatment process continues after the surgery. It has been almost 2 months, now we can have sexual intercourse with my husband. But a full recovery can take up 6 months.

Is it possible for you to have children naturally?

- No. Even though I have fully functional ovaries, we can't have children naturally because I have no uterus. We are considering to use a surrogate mother.

vajinam yok

Is it legal in Turkey?

- No, it’s not. I am guilty because I was born this way. In my condition, having your own child is only possible with the help of a surrogate mother. But you cannot do that in Turkey. I need to consider other countries where it is legal. Unfortunately, it is quite expensive and difficult. On top of that, you have to follow this path with secrecy.

Do your relatives know about this procedure and you, having a functional vagina?

- Only my closest relatives know. I had to keep it as a secret like it is a crime. Someday, I hope I can feel free about  this in my country,

Are you having this interview to say “ You are not alone” to women who suffer from the same situation?

- Definitely yes. I am sure there are other couples suffering from the same condition. This surgery that I had, can be done in different clinics in Turkey, but I chose Prof. Fatih Sendag and his method because it is the most natural method amongst others. It was a though process, but it was worth it. I hope we can meet with others who suffer from this syndrome under a foundation and fight for our rights.

Your husband didn't see this condition as a problem in a male-dominant society and build a happy life with you. What is your opinion about that?

- Sometimes I think that my husband was created for me. He made a lot of sacrifices.  I hope, god grants husbands like mine, to everyone who suffers from this condition.

How do you describe your love for him?

- I am in love with him. Not just with his physical being, also with his character and personality. I am grateful for having a husband like him. I told him that I have no uterus or a vagina. Yet, he told me it doesn’t matter and he wanted to marry me anyway. Believe it or not, I was surprised after his reaction. I wasn’t sure that he understands the situation, and asked him if he is sure. He laughed and told me he is sure and he loves me unconditionally.


vajinam yok operasyonu

 

The husband, Kemal K. says: “ Most men could have walked away.”

How did you feel when you learned about her condition, the women you are in love with?

- I felt sad and surprised. But I thought we can overcome this because the important issue was our love for each other. And I thought “What if he told someone else, not me? Because most men would have walked away .”

Did you hesitated ?

- Actually, no. I have found the woman and love I was looking for.

You loved her so much, that you didn't see it as a problem. Even not having a vagina and uterus?

- Yes. I always wanted to protect her. I was thinking to myself, how should I tell this to my own family? And I wasn't sure how they would react. Because my wife shares and appreciates our love, we were able to overcome all of our problems.

Did you promote her to having this surgery?

- Rather than promoting, we both knew it was necessary. So we waited for the right time and circumstances.

Do you think that you would be so understanding if you weren't a doctor?

- Being a doctor helped a lot and I was fully aware of the situation. But if the love is in place, it doesn't matter if you are a doctor or not. Ferhat, split mountains for his loved one, Sirin. Mecnun passed deserts for his loved one, Leyla. Me, being an understanding husband for my wife compares nothing like them.

  

Prof. Fatih Sendag: “ Sexuality is still a taboo.”

fs tabu

How common is this syndrome?

- Vaginal agenesis is a condition where a vagina is not developed at all. Every 1 out of 4000-5000 baby girl is born with this condition.

Is it a disease?

- The patients are physically and psychologically normal. Their genetic structure is normal too. It is usually diagnosed during puberty when patients realize that they had no menstrual cycle. But it can also be diagnosed early if a proper newborn examination has been done. The physical and mental development is normal as well for a female. But, the patients can not have sexual intercourse and give birth.

Is there a cure?

A vagina can be constructed with surgery. Which is what we did in Selma’s situation.

Is a Uterine Transplant is possible?

- It is quite a new technique and a group of doctors were successfully did it in Sweden.

Are there any risks in Vaginal Surgeries?

- In some techniques, the vagina is created using a skin sample from the patient’s hip, leg or abdominal tissue. All of these procedures carry serious risks. Bu in our method, we stretch the tissue between the urinary tract and intestines, creating a new void using the closed surgery methods (laparoscopy). Of course, it carries fewer risks and the newly constructed vagina is more natural.

After the procedure, can the patients continue their normal life?

- Of course. It is possible to have sexual intercourse, 2-3 months after the surgery.

Are patients born with this syndrome get judged by society?

- Unfortunately yes. The patients usually see themselves as half women. They feel less feminine because they cannot have sexual intercourse. They fear that they will be unsatisfying spouses for their husbands because they are unable to have sex. They are keeping it to themselves because they feel ashamed. Only %20 of these women are willing to see a doctor about their situation. Sometimes, they even do not know where to apply. Unfortunately, sexuality is still a taboo for our society. It is even more unfortunate that people are not aware of their genitalia. They do not know what is normal and what is not. We are witnessing very dramatic stories. A woman without a vagina marries to a man and he doesn’t aware about it. The man also does not know anything about female genitalia. At one of my examinations, I was shocked. The couple was using the urinary tract while having sex and they didn’t aware of anything. They were thinking it was normal. I am thinking that sexual education is very important to raise awareness in our society. In a society, where sex is still a taboo, women who do not have a vagina is unable to get information about their condition. They accept this condition as their destiny and they choose to remain silent because they are afraid of the judgemental society.

Source: Hurriyet

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