Veronica's Story

[Published in issue No. 7 (Spring 1997) of the UK group's newsletter, ALIAS, under the title A Mother's Story.]

In April 1994, when Sally hadn’t started her periods, I took her to see my GP, the month after her 16th birthday. I told him I thought it could be an imperforate hymen (I know a girl who had this problem). He started to examine her externally. I could see Sally was embarrassed and when he started to put on the rubber gloves I said that I wanted her to be examined by a woman gynaecologist and told him to leave her alone. He said that he too thought it was an imperforate hymen. He asked me to examine her myself, if he wasn’t allowed to do this. I examined Sally, and then her younger sister, Jenny, who was nearly 12 at the time. I could see a difference. It was the first time I had seen Sally ‘down below’ since about 1 year old, as she was out of nappies very early. I could see more of Jenny’s ‘insides’; in fact I thought that she might have damaged herself in some way on her bike.

When we saw a woman gynaecologist at the hospital I told her what had happened. She said that she should have been the one to examine Sally, not me, since she was the expert etc., etc. Anyway, she examined her and said it was not an imperforate hymen since she had been able to insert a cotton bud, but she would arrange a scan. I asked for the results to be held over until Sally had finished her school GCSE examinations. On 3 August we went for the scan results. The gynaecologist told us that Sally had been born with no womb and that her ovaries were in a strange place, in her groin. She asked to take a few samples of blood from her for some tests.

I phoned the gynaecologist a few weeks later and asked to see her (she had made the next appointment for Christmas time and I thought “You can't just tell someone they have no womb and to come back in four months”). My husband and I went to see her but she said very little since Sally was an adult and she wanted to speak to her. The following week I took Sally to see her. She told Sally she could never have a child, that her vagina might need to be stretched and that her ovaries would have to be taken out. In my ignorance, I asked if they could leave the ovaries in place so that perhaps in the future her younger sister might act as a surrogate mother. But she was adamant that the ovaries had to go.

A couple of days later I told my GP the news. Meanwhile the gynaecologist had written to him to tell him everything. When I told the GP that the ovaries “had to go”, it was then that he told me they were not ovaries, but testes. How I got home I'll never know. I couldn't say anything to Sally when she came in from school. My husband told me not to be so stupid, “How could she possibly have testes when she is a girl”. I phoned the gynaecologist the next morning and told her what the GP had said. She asked my husband and I to go in the following day. She told us they were ‘gonads’, not testes. I asked if these ‘gonads’ would make her look any different than she looked already, and she answered no. That was all I wanted, gonads, testes, ovaries, or whatever – as long as she looked the same.

Then, on 17 November, Sally and I went for the final consultation with the gynaecologist. She asked to see Sally first; I sat outside. After an hour or so I was getting nervous. She then called me into her office, and with Sally sitting there she told me Sally had XY chromosomes. This meant nothing to me. I looked at Sally and she was pure white; she knew what it meant. The gynaecologist gave me the address and phone number of a lady at the ‘AIS Support Group’ in case I wanted to talk to anyone about it. The term ‘AIS’ meant nothing to me either.

The next day I called in to tell my GP the news. When he asked me how much I knew, I replied “Everything”. He then said “Well you know you have a boy then. XY equals boy”. I said that she couldn't be a boy as they weren't testes, they were gonads. He thought I was in denial, when I kept on saying that she couldn't be a boy. He was saying over and over again, “Mother, you have a boy. XY equals boy”. I walked out of his surgery vowing never to enter it again. He should not have told me anything anyway since Sally was over 16 years of age.

I got straight onto a bus to town and looked up ‘AIS’ in the medical department of a large book shop near the university. It was then that I found out the truth. There I was, reading about my beautiful daughter, on my own, finding out exactly what ‘AIS’ meant. I was shaking all over. I was nearly fainting, at the clinical photographs etc., with the eyes blacked out, thinking this could have been Sally. I felt sick. Somehow I managed to get home, and I phoned the support group. The lady calmed me down and explained everything and the following day the group’s factsheet was in the post.

On 4 January 95 Sally had her ovaries/testes/gonads removed. She started her HRT in the February, and in the March my husband and I went to the very first AIS Support Group meeting in Mansfield. It all happened so quickly. If the lady I first phoned and the rest of you hadn't been there for us I can't think what might have happened.

I wanted to make a complaint about the GP at the time but there was Sally to consider, I would have had to mention her name etc. I changed to another GP in a different practice. I told him everything about AIS, and about the other GP, and he agreed to take on the whole family. I gave copies of every issue of ALIAS to both the new GP and the gynaecologist. Yet when I recently visited the new GP and told him I had written to a London gynaecologist about the possibility of Sally having a vaginoplasty, his reply was. “Why are you doing all this? It might never be used. After all she is neither woman nor man. She is an ‘in-between’ sex”. I couldn't believe what he was saying and he even repeated it later on in the conversation. This was only a couple of days before the 4th support group meeting in Sept 96.

Whilst I feel so mad, and I want to complain, I do not want Sally to be involved. I have not told her what the new GP said about her. I’ve written to the gynaecologist and told her, and await her reply.