健康養身★感嘆！美麗的她21歲時訂婚，卻因天生沒有OO，未婚夫一聽就拋棄她，直到26歲時遇到他…

(圖片翻攝自今日頭條)

Joanna Giannouli, 27, has a condition which means she has no womb, cervix and upper vagina. Here, she explains the challenges of a syndrome that affects around one in 5,000 women.

Joanna Giannouli今年27歲，她有著特殊情況：她沒有子宮、子宮頸和上陰道。在這裡，她將向我們講述這種約五千分之一的女性會患有的綜合症所帶來的挑戰。

When we first saw the doctor, my father put on a brave face. My mother, on the other hand, didn't take it so well. She blamed herself for the past 10 years. It was really heartbreaking to see her like that.

我們第一次去看醫生的時候，爸爸表現地若無其事，然而媽媽卻無法正常面對。過去的十年來她一直在責備自己，看到她這個樣子我覺得很心痛。

We didn't talk about it much for the first five years. I wasn't able to talk about it. I felt destroyed and incredibly weak. My mother believes she may have done something wrong in her pregnancy . I've explained to her that she didn't do anything wrong, it was just genes.

在我五歲之前，我們沒有過多談論過這事，我也不能談論。我覺得自己完蛋了，而且感到非常脆弱。媽媽覺得她在懷孕期間一定有什麼做得不對，我告訴她，她並沒做錯什麼，這只是遺傳基因導致的。

It's a condition that is stigmatised. The most hurtful thing was when I was abandoned after my former partner found out.

這種特殊情況讓我蒙受了很大恥辱，其中最大的傷害是我前男友發現以後就拋棄了我。

I was engaged when I was 21, living in Athens. When I told my fiance about the condition, he broke off the engagement. That all belongs in the past and I am OK now. For the past five years, fortunately, I have had a stable and loving relationship. He knew from the beginning that I have this condition and he chose to stay with me. He knows that maybe the future will be without children. He's OK with it. I'm also OK with that. I am one of the luckiest.

我21歲時訂婚了，住在雅典。當我告訴未婚夫這個情況後，他悔婚了。但那些都是過去了，我現在很好。我很幸運，過去的五年間我一直都有一個穩定和愛我的伴侶。他一開始就知道我的情況，但還是選擇和我在一起。他也清楚以後我們可能不會有自己的孩子，但他表示能夠接受，我也能夠接受。我真的很幸運。

(圖片翻攝自今日頭條)

My mother took me to our family doctor when I was 14 because I still wasn't menstruating. He didn't examine me because he wouldn 't touch my private parts and when I became 16 he sent me to a hospital to be checked out. They realised that I didn't have a vaginal tunnel and I had Rokitansky syndrome. Because I was born without a functional vagina, the doctors had to make one in order for me to have sex.

我14歲時還沒有來月經，於是媽媽帶我去看家庭醫生。他沒有給我做檢查，因為不願意碰我的私處。 16歲時他把我送到醫院做檢查。醫生髮現我沒有陰道，確認我患有Rokistansky綜合徵。由於我天生沒有陰道，醫生不得不為我裝了一個人造陰道從而可以有性生活。

It went well, really well. I stayed in a hospital for about two weeks, in order to recover. Then I had to be about three months laying on a bed - I couldn't get up. I did vaginal exercises in order to expand my new vaginal tunnel. The first sign of it is you have primal amenorrhea - you don't have any menstruation at all. Apart from that, you cannot have sexual intercourse. That's why I had m​​ajor surgery aged 17. The doctors made me a new one. It was a revolutionary procedure in Athens.

手術進展十分順利，為了康復，我在醫院待了兩週左右。後來我在床上躺了三個月-我起不來。為了擴張陰​​道，我做了些陰道訓練。這種綜合徵的第一個表現就是無月經-你壓根沒有月經。除了這個，你還不能有性生活。這就是我在17歲時做了大手術的原因。醫生幫我造了一個新的陰道，當時這在雅典是一個革命性的手術。

The new vagina the doctors made was narrow and small, and it caused me a lot of pain while having sex, and I had to expand the perineum by doing vaginal exercises. It's a small area underneath the vagina. It's skin, it's tissue, and they had to cut it more in order to expand the entrance, as I call it.

醫生為我裝的新陰道非常窄小，在性生活時會帶來巨大的疼痛，所以我不得不通過陰道訓練擴大會陰部，即陰道下面很小的區域。它是些皮膚和組織，他們必須把它多餘的部分切掉來擴大入口。

After that I was OK physically, but I was not OK emotionally. It's a burden, like something that you cannot get rid of it. I had partners who emotionally abused me about this condition. I couldn't have a stable relationship for many years because of that. It is a haunting and unbearable situation. It steals your happiness, your mentality, your chances of having a good and stable relationship. It leaves you with a huge void that cannot be filled, it fills you with anger, guilt, and shame.

身體上我可以接受了這個人造陰道，但感情上沒那麼容易。它就像個負擔，你甩都甩不掉。我曾經的交往對象因為這個對我進行感情折磨和虐待，也因為這個，很多年來我都不能有穩定的感情生活。這種難以忘卻和無法忍受的境況會從精神上剝奪你的幸福，剝奪你擁有一段美好穩定感情的權利。它帶給你很大的無法填補的空白，然後用憤怒、愧疚和羞恥將它們填滿。

Apart from that, it was hard afterwards. It was just taking a toll on me emotionally, psychologically - it was really, really hard.

除了這些，後期也很艱難。它一直給我的精神和心理帶來巨大的負面影響-非常非常艱難。

Well, it's been almost 10 years. I'm still feeling bad about it but I'm not ashamed any more, it's been way too long. And I've realised that I cannot change it, it's just the way it is, I have to embrace it and live with it.

快十年了，我仍然感覺難過，但不再羞愧，人生路途漫漫。我意識到我無法改變它，它原本如此，我必須接受現實並且繼續生活下去。

For the first few years, and still sometimes, I thought I was worthless. Damaged goods. Not worthy of being loved. I was a lost soul for many years. It can destroy your life. It puts you in a rea​​lly hard position. I battled depression, anxiety, panic attacks, you name it.

在最初幾年，甚至現在偶爾也覺得，我是沒有價值的，是殘次品，不值得被愛，多年來我一直迷失心靈。這種狀態能夠摧毀你的人生。它把你置於一個艱難的境地。我與沮喪、焦慮、驚恐等你能想到的各種負面情緒艱難鬥爭​​。

It taught me a lesson. Although I don't believe in God, I do believe that this was a huge wake-up call - never take anything for granted.

我從中也學到了一些東西。儘管我不相信上帝，我卻相信這是一個巨大的警鐘-永遠不要認為一切都是理所當然。

I was reborn. It gave me a new life, a new identity. It changed the course of my life. Before, I was a typical teenager with ups and downs. Afterwards, I became really, really mature . I grew up rapidly. I am thankful for that.

我獲得了重生，它給了我一個新的生命，一個新的身份，它改變了我的人生軌跡。在那之前，我是一個典型的青少年，有些小的起起落落。後來，我變得真正成熟起來，迅速成長，我很感激。

This defined me as a person. I am living each day as it is. I am not making any future plans because I don't know if I'm going to be alive.

Not many people know this about me. I wanted to keep it a secret and my mum told family members. It wasn't the best experience because people pity you. I don't want people to feel sorry for me. I'm not dying, I'm not in danger. People had this pitiful look. It made me feel sadder about myself.

很少有人知道我的這種情況，我想保密但我媽媽告訴了其他家人。這種經歷非常不悅，因為人們會憐憫你。我不希望他們為我感到遺憾，我又沒垂死，也沒有處在危險中。他們那種憐憫的神情讓我更加難過。

I couldn't talk about it because in Athens - in Greece generally - people are really close-minded. Sometimes it felt like I was living in the Middle Ages.

我不能談論這種情況，因為在雅典-或者不如說在整個希臘-人們的思想非常保守。有時我覺得自己像是生活在中世紀。

I couldn't find a support group in Greece, I couldn't find anyone else to talk about it. And I needed someone to talk about it! It was huge, and most women with the condition are ashamed, really. I've found a couple of women that were willing to talk about it, and after a while they disappeared because they were ashamed of it.

在希臘也沒有支持團體，我找不到任何其他人來談論這件事，而我需要有人跟我談論！這件事很嚴重，大部分患有這種綜合徵的女性都感到由衷的羞恥。我曾找到過一些女性願意談論，但一段時間後她們就因為太過羞恥而不見了踪影。

I would love to be a mother in some way, be it a biological, a surrogate mother or a foster mum. A mother is not the one who gives birth but is the woman who cares for a child.

我想通過一些方法成為一個母親，不論是生母、通過代孕或通過領養。母親並不一定是生你的人，還可以是關心孩子的女人。

At this stage of my life, I'm not thinking about it but maybe in the future I will have children. I love kids, we will see.

我這個年齡現在不會考慮這件事，但或許在未來我能有小孩。我喜歡孩子，我們到時候再看吧。

It is liberating to talk about it. I want to support every woman that has this condition because I have been through hell and I know what problems this can cause. Many women have committed suicide because of this. It can be really depressing.

能夠說出這些我感到是一種巨大的釋放，我想支持所有和我一樣的女性，因為我經歷過地獄，我知道這些問題會導致什麼結果。很多女性因此選擇自殺，它能讓人非常沮喪抑鬱。

I found the strength and courage because I want to help other women in the same position because if we don't help each other then who will? It gives me strength when I talk about it.

我發現了力量和勇氣，因為我想幫助和我境況相同的女人，如果我們不互相幫助，誰來幫助我們呢？我在談論這個時，感受到了巨大的力量。