AHN - CAH REAL Article
What my mother NEVER Told Me
By Rachael Woolston
REAL Magazine October - November 2001.
(Please note as the magazine didn't check the text properly once they had written the article it is not totally accurate and in a few paragraphs is slightly sensationalistic)
Melissa Cull. 33, endured many painful operations as a child, but it was only years later that she learned why. Born with both male and female genitals, she must live with the doctors? irreversible decision forever.
It was the usual Monday morning ritual ? one that I dreaded. All the other girls sat together giggling. Recounting who?d drunk what at which party, who?d kissed who and how far they?d let their boyfriends go. I stayed in the corner, trying to be Invisible. It didn?t work. ?Well. Melissa, let?s hear about your boyfriend, one of the girls sneered. ?Oh, I forgot, you?ve never had one. Ever! The pack laughed and I turned away my face hot, my eyes smarting. I was 13 and miserable. Had they discovered my secret?
Did they somehow realise that I was different and could never join in their easy conversations about boys? I longed for my biggest worries to be about spots or a flat chest, or whether my boyfriend fancied my sister. But life would never be that simple. I was a deformed freak of nature.
I was born with both male and female genitals. My parents were traumatised, doctors baffled. It had taken three weeks before medical tests had showed what had caused my sexual ambiguity, and which sex I was meant to be ? female. Although I had what looked like a penis. I also had ovaries, a uterus and vagina.
My parents were told that I had a rare intersex condition known as con?genital adrenal hyperplasia (CAH). It was a genetic disorder ? an enzyme was missing as I was developing in the womb. I was lucky to have survived at all, and had to spend my first three months in intensive care. It also meant that I had too many male hormones. This had affected the development of my genitalia, causing my labia to fuse and my clitoris to grow, giving it the appearance of a penis.
Shocking, revolting maybe but my parents were grateful that my condition had a name and I could undergo surgery to turn me into their ?little girl?. The medical establishment was intrigued. I was an oddity they could examine and talk about in lectures and medical papers.
Decisions were made then and there about my future. My parents were guided by the doctors, who suggested I should have corrective surgery to my genitals as soon as possible. They would operate to make them look female to prevent any gender confusion.
It wasn?t simple. I would need four major surgical procedures before the age of 18 to reconstruct me.
I was just four years old when I underwent a clitorectomy ? the surgical removal of my enlarged clitoris. This procedure is also carried out in underdeveloped parts of the world under the guise of female circumcision. It leaves one in four women unable to reach orgasm or have a fulfilling sex life.
Luckily, I don?t remember much from that time in my life. I know that I went into hospital feeling scared and con?fused about why I was there. I remember days of terrible pain ?down there, which went on for weeks. But it was done, and the doctors told me that it was for my own good. Within 10 weeks, I was back at school, in discomfort, but trying to concentrate on my lessons and making friends.
But I was always an outsider. I was a shy, private child, probably because I knew I had a secret ? one that was never discussed, not even at home.
And so I didn?t make friends, prefer?ring to be alone. I couldn?t risk getting close to others in case they found out. My classmates knew that I?d been ill, and had been warned that my condition could be life-threatening but that just made me more of an oddity. I couldn?t explain the whole truth because that would mean admitting it was much more than just a ?salt problem? [one of the effects of CAH is that the body can?t retain salt. Isolation was the price I had to pay. I ignored any attempts by class?mates to befriend me and they soon gave up, bored with my aloofness.
Occasionally, as I grew older I would have to see a gynaecologist for lengthy examinations. Although I asked what was wrong, no one ? not even Mum, Dad or the doctors ? would tell me anything specific except that I needed ?fixing down below? They were probably trying to be protective, assuming that the less I knew the less upset and confused I would be. But I thought they were ashamed ? my problem was something to keep quiet about.
Then I thought there was another reason for their silence. As my questions were deflected I convinced myself that I had cancer and the truth was being hidden from me. So I quietly accepted that I had to see a doctor every few months and frequently go into hospital.
At 11, I underwent major surgery. I later discovered that I?d had a vagino?plasty. My vagina was hidden higher up inside my body and connected to my urethra, instead of the outside of my body. The operation to recon?struct my vagina had to be done before I started puberty and menstruation, so the blood could leave my body. Supposedly. I would also be able to have sexual intercourse.
I woke up in agony. It felt like I was on fire. I had surgical packing inside me, which I now know was there to keep the vagina open while it healed. However, no one had explained this to me so, I removed it because it was pushing against my insides. Subsequently, I didn?t heal properly, and needed two more rounds of surgery to deal with scarring complications.
I also had to use a dilation device to help stretch my vagina, so that I would be able to have a sex life when I was older. I didn?t want a sex life ? not if it meant putting myself through all this.
But the gynaecologist insisted. He showed me how to insert the glass instrument, which looked Like one of the test tubes we used at school, only shorter and thicker. The pain was so excruciating. I winced and had to be coaxed into trying again. I had to do this up to 10 times a day, until it didn?t hurt any more. Then I would be given the next size up. This was to continue until I could insert the normal ?male? size comfortably.
It was an almost impossible task for a 14-year-old girl who was already con?fused about her body. Unfortunately, my mother avoided the issue. One day, when we were alone, I tried to talk to her about it, but she refused to be drawn.
?The doctors know best,? she said, before changing the subject. Mum and Dad had been kept in the dark by the experts just as much as I had. The issue became a no-go subject for everyone. Eventually, I gave up and hid the dilation device in a drawer. which meant my vagina never reached adult size.
But then I began to be curious. Maybe it was the hormones of puberty, but I wanted to know how abnormal I was. I didn?t have a sister and I had never seen my mother naked, so I had no one to compare myself with.
One right, after taking a bath. I turned to the mirror. A chubby teenager stared back. From the waist up I was normal, the beginnings of breasts visible. But as my eyes lowered. I began to cry. My genitals were a crisscross of scars. The numerous operations had left raised, red welts on my skin.
That was when I decided I?d never allow anyone to see my body. I didn?t want to witness a man?s revulsion when he realised what I was ? an imitation of a real woman, a fake. I also steered away from girls at school, with their perfect bodies, terrified they knew the ugly truth.
Although I wasn?t pretty. I was asked out for dates by the more studious boys. but I always said no. I couldn?t risk them discovering my secret. When my contemporaries talked about rela?tionships and having families, I switched off and buried the sexual feelings awakening inside me.
By the age of 18, I?d resigned myself to a life alone. I was so disgusted by my body. I felt I could never marry or have children. Theoretically. it was possible ?I would need fertility treatment because of my hormone therapy and a Caesarean because my vagina was too small for a natural birth ? but who would want me?
I spent the next few years studying and working as a technician, if I couldn?t have love and a family, I would have a career arid make something of my life.
Then, at 22, I met Lucas. I?d joined a local model-making group and he seem?ed kind and funny. He was the same age as me and, slowly, we became friends.
Inevitably. I realised I was in Love with him and suspected ? or was it hoped? ? that he felt the same. I knew I should be honest and tell him about my surgery. but I didn?t. I was scared that if I did. I would lose him. We went no further than kissing, but couldn?t carry on like that forever. I knew we had to take a risk for the relationship to stand a chance. Eventually. I told him everything. unburdening all those years of pain.
?I don?t know why it happened.? I said. ?It?s just bad luck, I suppose. I hope you understand.? I was scared and sat there looking at him waiting for a reaction.
?I need time to think about this.? he said, as he walked Out of the room. I couldn?t be angry. This wasn?t his fault. I knew how hard it would be for any man to deal with. But later, he came back and said he was prepared to give it a go.
?I?d really like to try and make things work; he said. So we became a couple. We held hands, went to exhibitions and out for meals. We were normal ?except that for a long time, we didn?t have sex. I just couldn?t face it and he didn?t press me. It was a month before my 27th birthday when I lost my virginity. It?s a day that every women remembers ? I just wish my memory could have been happier.
We were at Lucas?s house. It was relaxed as we started kissing and caressing each other, but I was nervous and frightened. This was the reason for all the surgery and emotional anguish. No one except my doctors had seen me naked. No amount of explanation could prepare Lucas for what he would see.
When I undressed, he flinched as his eyes wandered to the lower half of my body. I felt ashamed and angry at myself for being foolish enough to think anyone could find me attractive. Then he pulled me towards him and held me.
?I?m sorry,? he said, although I could hear the panic in his voice. ?It?s just a bit of a shock.?
Somehow, we had sex. Lucas was very gentle but, with every movement, I felt my insides being ripped apart. It was upsetting, not sensual, and Lucas blamed himself for inflicting so much pain on me. I was in tears ? it should have been a beautiful moment. Instead, we were left hardly speaking, both of us traumatised by the experience.
The next day, I went to my GP, convinced that I?d been damaged inside. He explained that the surgery had left my vagina so scarred that sex would always be painful. I desperately wanted this relationship to work and hoped things would get easier.
I didn?t see Lucas for three months after we first made love. He couldn?t cope with having hurt me so much and hid away from seeing me again. But then, -out of the blue, there was a knock at the door. It was Lucas.
?I?m sorry,? he said. ?I missed you. Can we try again??
So we did, but Lucas still flinched at the sight of me naked. I felt despondent, but I knew it was an involuntary reac?tion. We continued to have sex, despite the pain. I wouldn?t give up. I was determined to have a normal sex life and did everything I could to enjoy it.
I took strong painkillers beforehand, but these just left me numb from the waist down. I tried them after sex, but that didn?t help either. The pain was due to my clitorectomy. I?d been left with a stub of erectile tissue, stitched over with skin. During sex, this became erect and tore away from my pubic bone, which was indescribably painful.
Each time we had sex, the relation?ship deteriorated. It became a test ?emotionally and physically. While other couples moved in together and planned their future, we had spells apart. An on-off relationship was all Lucas could manage. Eventually, after four years he left me. ?I can?t take it any more,? he said.
I was distraught. I didn?t blame Lucas. He?d tried to make it work. It was the doctors who had ruined my life. My scars were the one thing that I had no control over. They were left by suppos?edly necessary surgery, yet no one had ever had the decency to explain why.
It?s been two years since we split. I have friends, but I don?t go out much. I?m used to being alone, but I don?t want this to last forever. It?s incredibly difficult to find the confidence even to talk to men, because I know they wont be interested when they discover the truth.
I want what every other woman wants ? children and someone to come home to. I just have to wait and hope that. one day, a kind and decent man will want to become involved with me.
I now run a self-help group for CAH sufferers, which has more than 600 members. Talking to other women who have endured the same experience has been liberating. Many of these women have also gone on to have families.
I am undergoing a new dilation treat?ment, using plastic dilators instead of glass instruments. At least they don?t interfere with your daily routine. I hope this works, so if I meet an understanding man, I might have a fulfilling sex life.
As I get older. I become more angry ? Sex should have been beautiful. Instead, we were traumatised by the experience, especially the clitorectomy. I would much rather have had an enlarged clitoris than the scarring and complete lack of sexual satisfaction I?ve had to suffer.
I?ll never feel completely comfortable with the way I look, Ironically. I had surgery to make me more ?normal?. The doctors said I?d be able to make love and be like any other woman. In truth, the opposite has happened. I wish everyone had left me alone ? then I could have made my own decisions about my body, about my treatment. That?s every woman?s right, isn?t it?
Please note in order to protect identity Lucas is a false name.
CONGENITAL ADRENAL HYPERPLASIA -THE FACTS
Reproduced from REAL Magazine October ? November 2001.
Permission not given to reproduce photographs.
? 2001. Real Magazine, Bauer Publishing, London.
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