Angel's Story

[Received Sept 2002]

Hello Dear Friends

My name is _____ and am from Israel, if you decide to use my story please use Angel as my AIS name.

I am 29 years old and the last three days I am living in such a happiness that I have never experinced before. Finding your web site and reading about the support group in the U.K. was for me like finding salvation. For the last three days I couldn't get my eyes of the web page. I kept downloading the information and reading it over and over. I read the personal stories over and over, they all spoke to me and brought up emotions that I have buried deep inside me.

After reading the information in your site and comparing it to the few medical reports the I have, I belive that I have PAIS [doctors later told her she had 5-alpha-reductase deficiency rather than PAIS]. As a child I remember that once every 2-3 months I had to travel with my parents to a hospital near my home. I always hated these visits to the Hospital since I was brought up in an strict conservative society, and as a child I was told that no one should ever see me nicked or touch my body, but in these visits to the hospital I had always to get undressed and 1 or more doctors touched my private body.

In 1984 when I was 11 years old, I had a surgery, according to my medical file it was a CLITORECTOMY AND ORCHIECTOMY (MY TESTES WERE REMOVED). Since 1984 I take PREMARIL 1.25 MG (conjugated estrogens) every day. Now that am writing this I do remember that my dad did tell me something about TESTES that were taken out of my body, but as an 11 years old girl I didn't even start to understand what he meant.

Being a member in a family with 3 other sisters and one brother, and living in a small town and a very conservative society, my condition was a top secret, if anyone would know about this I will ruin my sisters and brother chance of ever getting married (by the way non of my sisters or brother are carriers of AIS).

Of course I never got my period, and that meant that somthing was wrong. My mom explained to me that I have no Uterus or Ovaries, and that meant that I can never bring children to the world, or even getting married since I had to do too much explanations in a society that deals with these issues through gossip and humiliation. I did have a development of my Breasts and I do have pubic and axillary hair (I guess this means am PAIS GRADE 6??). I went through high school and university and my social life was very good, but I never dared to really give a chance to any intimate relations, because I knew that it wan't work anyway. I did have feelings for men but I had to back [away] always since I knew it wasn't going to work. This always broke my heart and caused me emotional damages.

2 years ago I was concerend for the first time, about the HRT Treatment, and I started investigating about my condition. I gained a lot of weight from the Premaril (I have been on a diet for the last two years and my weight now is normal, but I am afraid that all my work is for nothing since I was told that Premaril makes you eat more). Above all I was concerend with the cancer risks. I never realy knew, why I was taking Premaril and I always thought that it is preventing me from developing masculine signs.

This was the time that I decided to pay a visit for a gynecologist. After examining me she told me that I had no Vagina at all and that I have to see a speaciliest if I ever wanted to have any sexual relations that included penetration. On my way home I remember so clearly the thougts that I had.... no vagina, no uterus, no ovaries, no period, testes that were removed..... what kind of a women am I? The knowledge of not having a vagina made me feel like a seald box, what if someone well try to rape me? This scared me to death. I did meet a GYNECOLOGIC ONCOLOGY PROFFESOR last year, and now I know that somthing can be done if I ever will meet the right person. And beside that I started concedring a lesbian relationship.

Three days ago and as part of my ongoing search for the truth about me (my condition) a miracle happend to me, I found the support group and a place with loads of information. No more pieces of information. I feel as if I was finaly given the permission after 29 years of darkness, to step out of my prison to the light. Writing my story today, made me realise that after all AIS did not defeat me, and in many ways it made me a better person.

I will always remember my fears and frustration, and I know that my AIS will always be a secret in my society, but now I also know that am no more alone. Reading the personal stories gave me a lot of strength, and made me realize also that I have great parents who dealt with my AIS with a lot of responsibility, and never lied to me about my condition.

THANK YOU FOR LETTING ME FREE.

Later she added:

...I got lucky two weeks ago and I did get all my medical records after all they didn't destroy them yet, the lady said that am really lucky. From I know now for sure that I have PAIS. In two weeks am meeting my doctor again after 10 years of not seeing him, and I have tones of questions for him. Am planing to photo copy a lot of information from your site and give it to him. Mabye this way I can save someone with AIS from waiting 20 years for knowing about the support group... I just found out about the web site lately. My parents and I were never refered to any orgnizations that could have provided us with information... ...I had to wait so long untill I read about my condition. When I wrote 20 years I could have writen 10, or 25, or 30 years since I was imagining a AIS patient how was just born and the doctors want [won't] mention to him or his parents anything about the AISSG and he will grow up and then after so many years find out about the support group...

...Since I read the information in the web site I feel the need to talk to someone about my feelings, worries and share my thoughs. Am afraid of the whole thing also. Mabye I should mention that am an Arab Christian and my society is really very close to such issues, they make jokes and fun about my condition. Many times I justed wanted to tell them that all this is not right, but I back [off] at the last moment (I keep remembering my mom telling me don't ever trust anyone with your condition not even your closest friends). Am tierd [tired] from all this and I think once my sister and brother are married I will explain to my close friends about my AIS.

All my medical records are in Hebrew and while I was reading about my surgery (May 1984) I FOUND THE WORD CORET OR COREL......... let me try to translate what is writen there....."after removing the clitoris and the testes the CORET? COREL?....WAS TIED FROM BOTH SIDES". WELL I don't know what it means? But in two weeks am seeing my doctor that last saw me in 1990/1991 and I will ask him...

We replied with what little information we were able to discover about the mystery term 'coret'/'corel':

.... I looked in dictonary and the only similar word I can find is 'cory' or 'corey' which is apparently slang for penis. I asked Sarah Creighton (consultant gynaecologist, UCLH, London) and she said: "She may mean the 'crura'. These are the 'pillars'' of erectile tissue within the penis. They are also present in the clitoris. They are usually tied off during clitoral amputation or reduction."....

In 2004 we heard that she was trying to set up a support group in Israel. In October 2004 she said, "Two months ago I have made contact to all hospitals in Israel. Doctors were really very happy to know about that".

In 2005 her story appeared in an Israeli publication (see below). She told us, "The article is about me. I was interviewed by Vivian Abu Raad. She is my friend and writes in Haaretz. I thought this is kind of therapy for me and a push for the Israeli support group":

http://www.haaretz.com/hasen/spages/534445.html

Tue., February 01, 2005 Shvat 22, 5765

Don't decide my sex for me

By Vivian Abu Raad

When 'H.' was born, her male genitalia were underdeveloped, a syndrome known as intersex. When she was 11, the doctors decided to turn her into a woman. She hopes others can decide their gender for themselves

"Congratulations, it's a girl," the parents were told. That was 30 years ago, and at the time, no one, not even the doctors, imagined that the newborn was not exactly a girl, that chromosomally, she was a boy, born with underdeveloped male and female genitalia.

H. was born to an Arab family from the center of the country that raised her as a girl. When she was two, her mother noticed that her daughter's genitalia were different from those of all the other little girls and took her to the doctor to be examined.

"Your daughter is not exactly a girl or a boy," the doctors told H's concerned parents. An X-ray, they explained, showed internal testicles inside the abdomen. The parents did not know what to do with the diagnosis.

"My mother cried a great deal and went into a deep depression," recalls H. "They did not understand how it was possible to be neither a girl nor a boy. So what was I? At meetings with doctors, Mother always asked the same question: Was I a girl or boy?"

The doctors referred H. to a hospital in the north that treats similar cases, and there she began a long series of treatments and tests that lasted 18 years. H. had to go there with her parents once a month for intrusive and often humiliating tests.

"They would undress me, measure my sex organs and sometimes take photographs," recalls H. "I felt unprotected. I didn't understand when I was supposed to get undressed and who was allowed to undress me. For the doctors I was an intriguing phenomenon, which everyone wanted to see and touch. I recall one examination when I lay naked on a bed in the emergency room, with lots of doctors all around, all looking and touching. One kept saying, `I don't feel any testicles.' But I didn't understand."

The phenomenon that aroused such interest is called intersex, which means "between sexes." According to Professor Ze'ev Hochberg, an endocrinologist at Meyer's Children's Hospital, Rambam Medical Center, Haifa, H. suffered from a genetic syndrome that affects the enzyme responsible for turning testosterone into dihydrotestosterone (DHT), which is responsible for the development and growth of the male genitalia in the male fetus. Because H., while still in the uterus, lacked DHT, her male genitalia were not formed, which is why everyone thought she was a girl when she was born.

This phenomenon was already known in ancient Greece, which called such individuals "hermaphrodites," from the names of two gods - Hermes, a male and Aphrodite, a female. Nevertheless, because it is such a rare phenomenon, the doctors did not immediately realize what was involved when H. was born.

Today, says Hochberg, there are four large families in the world that carry the gene for the syndrome, but that marriage within the extended family increases the risk of having a child with the syndrome. In Israel, marriage among cousins is relatively prevalent among Muslims, and consequently, there are more cases of hermaphrodites among Muslims than among Jews or Christians.

Family secret

When H. turned 11, following consultation with their physician, her parents decided to turn her into a girl, that is, to remove the testicles and reduce the size of her clitoris so that she would look female. They did not share the decision with their daughter and it appears that her parents neither understood nor wanted to understand the full implications of H.'s condition.

"In fact, all they wanted was for the matter to be over as soon as possible," she says.

H.'s parents, who believed that after the operation the problem would be solved, decided to discontinue the visits to the hospital. But their family practitioner convinced them to go back in order to continue treatment. Over the years, the entire matter became increasingly more difficult and humiliating. H. explains: "They were the same tests and the same touching, but I was no longer a little girl. I had grown up."

At first, it was not difficult to hide. The treating physician prescribed estrogen therapy so that she would develop as a women, and as a result of the treatment, she grew breasts, her voice became higher and her face remained free of hair. But when she did not begin to menstruate like her friends, H. realized that something was wrong, that she was different. Her mother, who noticed her distress, explained that she would never menstruate or marry or be able to have children like her sisters.

H. felt that the world of women was closed to her. For years, she refrained from entering into any kind of romantic relationship with boys or young men her age. "Every time my sisters talked about marriage, I was outside the conversation," she says. "I felt defective."

Because of the syndrome she suffered from was a terrible family secret, H. was forbidden to tell her friends about what she was going through, and she remained alone with the confusion and shame.

"I would tell myself that I am a woman, but that because fate had dealt me certain defects, I had no menstruation and no uterus." But the question of gender identity remained unresolved for her. The estrogen she was taking in high doses did not really help her feel more feminine, she says. "I always felt like a fake, and I asked myself how it was that I was a women if my breasts were merely the result of some hormone injections."

Prof. Hochberg maintains that if H.'s testicles had not been surgically removed, a penis would have grown as a result of the enzyme that becomes active during puberty. Her female organs would have become male organs and she would have become a boy and lived as a man.

She herself only discovered this recently, from information she found on the Internet.

"Sometimes I mourn the man I could have been," says H. Sometimes she puts on men's clothing "not in order to be a man," she says, "just to restore to myself control and the freedom of choice that was taken from me."

But then, during adolescence as well as afterward, her parents, who were unable to live with the fact that their daughter was not like other girls, urged her to dress and behave like a girl. Because she has masculine facial features, it has happened that people mistake her for a man. Then she is lectured by her parents about how she should wear jewelry and makeup and let her hair grow long.

"Each time it happened, I wanted the earth to swallow me alive, and it has happened many times," says H.

Times change

Today, a great deal more is understood regarding the emotional implications of the syndrome, and the physicians that treat families and children suffering from it try to support them more, provide them with more information regarding treatment possibilities and the decision.

Prof. Hochberg says that there are three approaches regarding the treatment of these babies. One says that what counts are the chromosomes, that if the baby is born with the male XY chromosome (as in H.'s case), the child should be raised as a boy. This approach, he says, is not really accepted these days.

A second approach, which is more popular, is to turn all of them into girls for reasons of surgical convenience. "Surgically, it is easier to create a woman than a man," explains Hochberg. "It is impossible to create a penis and much easier to create a vagina, which is why it is better for the baby to be a girl than a boy."

The third approach, which comes from the patients themselves, is that the choice should be left in the hands of the child - that is, to wait. Hochberg completely rules out this approach out, saying, "It is almost impossible to grow up for 20 years without a clearly defined sexual identity."

When H. reached the age of 15, it appeared to her and her family that they had found the perfect solution: "The idea was that I would enter a convent and become a nun," relates H. "After all, under the habit, no one could see what I had, and behind the closed doors of the convent, I would be remote and protected from the world's prying eyes."

And so, at the age of 18, contrary to the advice of her physician, she discontinued all treatments. Her doctor proposed continuing to the next step of her treatment and creating for her a vagina. She refused. She went to Europe and joined a convent. The attempt failed.

"The whole time, I was worried that I would run out of estrogen and be unable to get any more," she recalls. "The nuns didn't know about my condition and I lived in great fear that someone would find out that I wasn't really a woman."

She returned to Israel after three months. "When I came back to Israel, I felt lost," she says. "I didn't have any direction or goal." She began to work at odd jobs and signed up to study theology in the university. At the age of 29, after completing her studies successfully, she decided to immigrate to Britain.

"I thought that people abroad were more liberal and that there I had a chance of becoming part of a couple without too many explanations and in the hope that I would be accepted the way I am," she explains.

This trip too ended sooner than expected. "I realized that the strangeness that I feel is not really connected to a particular country, but that it comes from the feeling I have inside me," she says. And with this insight, she decided to gain a deeper understanding of her condition and create a change in her life.

The secret comes out

She set out on her journey of self-discovery in the hospital in which she had been treated as a child, where she asked to see her medical records. The file, she was told, was on the way to the incinerator, and only after she insisted was it found. H. managed to photocopy it before it was destroyed.

"I returned home and for an entire week read it dozens of times," she says. Armed with clinical terminology, she continued her Internet searches and was stunned to find an ocean of information and explanations.

Only then, she says, "I felt that something inside was set free. I realized that there are other people like me and that I am not all alone in the world. I decided to write to them and share what I was going through with them."

That was when she discovered that she had in fact been born with a male chromosome. The discovery triggered an outburst of renewed anger with the doctors, who even after she grew up did not bother to give her the information that could have made things easier for her and did not think to recommend emotional support for her and her family.

She went to the doctor who had treated her throughout her childhood. "I had a lot of questions," she says, "but I felt that he was afraid of my questions, perhaps afraid that I would sue him."

Her journey of self-discovery continued with psychological treatment. "During our first session, I sat and cried," she recalls. "It was the first time that I felt that I could cry and talk about it without it hurting someone."

Her important discovery in her treatment was that she was afraid of being a woman, largely because of her masculine appearance. "I was afraid that if I groomed and took care of myself, I would be viewed by society as an effeminate homosexual," she explains.

At a certain stage, she decided to share her experiences with some of her friends. "There were different responses, but most supported me, and one even said that I was now more special to her," she says. When she told her parents about it, they accepted the fact that others now knew the secret the family had worked so hard to hide very badly.

Today, H. chooses for herself when and how to come out of the closet. She says that she feels pride in her gender identity. "In the more liberal places in Israel, I introduce myself as an intersexual, and that is the most appropriate designation for me," she says. Only in the less tolerant Arab society does she still introduce herself as a woman, and hopes for better times.

In order to prevent other children from going through what she did, H. has established a support group in Israel where those that have an intersexual gender identity can receive information and emotional support.

[Her contact phone/email were given - they are also on our 'How to Contact Us' page]