Elizabeth's Story

[Published in ALIAS No. 8, Summer 1997, under the title Mary, Mary, Quite Contrary.]

Australian, Mary, tells a story that is not quite as jolly and innocuous as the nursery rhyme that bears her name:

I am 50 years old. When I was 16, I went from being the smallest in my class to the tallest. I left school at 16 and my parents took me to my father’s doctor in a suburb some miles away from home. I couldn’t understand why I wasn’t being taken to the local GP. My memory of what happened at the doctor’s is not clear. I think he told my parents and I not to worry that I hadn’t had a period and that everything would be alright. I used to lie to my girlfriends about the timing of my ‘periods’ and never told anyone that I was not menstruating at all. At around this time I met a lady who was concerned that I did not have any breast development and suggested I buy bras that were “specially made for people like you”. I was mortified. I would not stay at friends’ houses for fear that they would see that I was different. I have very little pubic hair and have never had hair under my arms.

I seemed to be getting taller all the time. I talked to a priest when I was 20 and told him that I thought something was wrong and that I appeared to be different from other women. He suggested I go and see a gynaecologist. The lady doctor was very nice to me and indicated that a lot of tests would be required, on an outpatient basis. Whilst I was in hospital, having varicose veins stripped, another outpatient visit became due and I was examined by a male doctor because my female doctor was on leave. He suggested that since I was already in hospital they would undertake some extensive testing. All this was done in the presence of medical students. They treated me like a guinea pig. They kept asking questions of the senior doctor and totally ignored me. It was as if I was not in the room. The tests included an examination under anaesthetic in which I was cut ‘below the bikini line.’ Colour photographs were taken of the operation which I believe many medical students attended. During all this time I had not told my mother what was going on. I did not want her visiting me.

After the operation, the doctor showed me colour slides of the exploratory surgery. He went to great lengths to explain to me that “everything was female”. He even indicated the ‘ovaries’ which were the size of a small finger nail. This did not mean anything to me. I had not been educated at all in the female reproductive system and this, coupled with my strict ‘Victorian’ upbringing, made me quite scared. I thought I should not be looking at these pictures as they were bad. I kept looking away and the doctor kept forcing me to look back at the slides. He kept telling me that “everything was female”. I couldn’t understand why he was saying this because I felt female anyway, even though I wasn’t sure what that was.

The doctor said that they wanted to take a series of photos of me with no clothes on. He said it was necessary to monitor how I would change under treatment. Once again, I was horrified. I had never taken my clothes off in front of anyone before and the mere thought of having someone photograph me naked was appalling. The ever dutiful person that I was consented to this. It was awful. I really felt like I was being used, and hoped and prayed that no one would recognise me in the photographs. I have had great problems with photographers and photos ever since. After leaving hospital at 20 I decided I didn’t want anything more to do with doctors. At that time I had no support from my family and my mother did not talk about my condition. I had two boyfriends when I was in my 20’s but they were very superficial one-off outings that didn’t amount to anything. I am still single. I have spent most of my life struggling to come to terms with myself.

I was not told the fundamental truth about my condition until 1990, at the age of 44, when an endocrinologist who was investigating my bone density told me that I had male chromosomes. This confirmed the fears I’d had throughout my life that I was different from other women. I had a great deal of trouble accepting these issues. The next few years were a real struggle and I ended up spending a month in a psychiatric unit trying to come to terms with my identity. I did not, and wanted to end my life. The staff were OK but did not know how to address intersex problems. I tried to speak to a psychiatrist about my identity problem but he obviously found it difficult and kept changing the subject. Ten months later I ended up in another psychiatric unit. I did not know who I was. I wanted to die but did not have the guts to kill myself. I tried not eating but this did not work.

Believe it or not, my diagnosis has still not been clarified. Doctors thought at first that I had Turner Syndrome (primary ovarian agenesis) but my 46, XY chromosome pattern then led them to think I had AIS. They are now favouring Pure XY gonadal dysgenesis (Swyer Syndrome). My medical records say that I have a small uterus, one streak ‘ovary’ and a normal vagina (and with hormone therapy I had my first period at the age of 41), but I am now wondering if my lack of pubic hair does indicate some androgen insensitivity also.

The female occupational therapist at the psychiatric hospital was wonderful. She realised how different I felt and worked very hard to help me. It was she who searched, and searched, until she found details of the UK AIS Support Group for me. It was like a gift from God. Here were real people similar to myself. When I received the support group’s latest newsletter [ALIAS No. 5, Summer 1996], I didn’t cry until I got to the article “Truth-telling Debate” on page 11. At that point, I just broke down because I identified so strongly with the support group’s response to the journal article. A very dear friend of mine, a priest, helped me considerably through this terrible time in my life. He seemed to know when to say something and when not to. These are the two people who have really helped me.

She wrote again in Aug 1997:

Dear Friends,

It is now almost a year since I returned to Australia from my first AIS Support Group meeting in the UK. What an experience. It certainly has changed my life. It is difficult to describe the feelings that I had at the meeting. I guess I felt a complete freedom, an ability to talk freely with people whom I knew cared and would not ridicule me. I felt at home. I would encourage anyone who has not attended a support group meeting to do so. It certainly is an emotional time, but well worth it. I will be eternally grateful to the German member who paid for my trip to the UK and Germany. It was the thrill of a lifetime. The time I spent socially with my AIS friends was invaluable and gave me the confidence to get on with life. This confidence was lacking before, and now I feel really good about myself and am getting on with life. I really do appreciate all that the AIS Support Group has done for me. I find the newsletter, ALIAS, inspirational and look forward to receiving every copy. I do not have AIS but Swyer Syndrome (pure gonadal dysgenesis) but this does not stop me from reaching out and trying to help AIS people.

My love to one and all.