Flora's Story

We received the following letter from Canada in late 1995:

Recently, while I was visiting a new physician, she mentioned that she’d read about an AIS support group in the UK. I was quite interested as... ...I have found it difficult to obtain literature on it or find physicians with any experience in dealing with people with AIS.

I would really like to find out more about your group, the resources at your disposal, etc. Perhaps I could obtain some pointers on how to set up a similar network in Canada. I’d be particularly interested to learn how many people with AIS are estimated to be living in Britain – no one has ever been able to provide me with figures for Canada or North America. Nor have I been able to determine whether anyone, anywhere is doing research into the condition – I know of past studies, but nothing current. One issue that I’m keen to pursue is that of gonadectomy... ...I keep wondering if the risk really is so great that surgery is necessary.

Feel free to share my letter with other members of the goup.

By mid-1996 Flora had started an AIS Support Group in Canada and wrote again as follows:

I have read some disturbing memoirs in the newsletter, and have my own sad tale to tell about the blundering of medical practitioners and my own blundering with my condition. And I recognize the therapeutic value of sharing these stories of anguish and anger. But I think it's also important to document the joyful surprises that many of us experience as we go through life with AIS – the lovers who seem to love one more because of one's differentness, the friends who find the syndrome interesting and have much good-natured curiosity about it. This is my own sad-story-with-a-happy-ending.

Like so many others, I encountered incredible bungling by medical professionals. At 19, I was admitted to hospital for two days of tests to determine why I had never menstruated. On the second day, the gynecologist marched into my room and, with three other patients and a couple of nurses in earshot, rattled off the diagnosis that I was born without a uterus, had ‘bad ovaries’ that needed to be removed, and had a short vagina that could be lengthened with a skin graft from my thigh once I'd found someone willing to marry me. Then he walked out. My family, none of whom was present, lived an hour's drive away. I had no comfort, no support, nothing. For the next half year, I was a suicidal wreck, completely alone with my grief, as my family was loathe to discuss my situation. I figured I'd probably never know sexual intimacy. This was 1970, and my friends and I had adopted the then-fashionable view that marriage was obsolete and virginity was an encumbrance to be got rid of as quickly as possible. It was hard to imagine any of the young men in my milieu proposing marriage or hanging around while I had surgery. Half a year later, I drunkenly discovered that in fact there was no problem with sexual intercourse. When I returned to the gynecologist, he said it had recently come to light that the vagina is a very elastic organ. But I'm quite certain that the medical community hadn't just made that discovery in the six months prior to my visit. In any case, I had my gonadectomy and spent the next few years in silent anguish, discussing my condition with no one, least of all my boyfriend.

But in 1976, when I was 24, 1 felt I needed to know exactly what was ‘bad’ about my ovaries and why I had turned out the way I had. I went back to the geneticist who had carried out tests on me... She said that she respected my intelligence and curiosity and therefore felt obliged to tell me that certain details of my condition could not be disclosed to me because they were so awful. I spent another six months in suicidal despair, searching in vain through medical books and expecting to die young or contract a horrible disease.

Shortly after my visit to the gynecologist, I got a scholarship to study French in Avignon for a couple of months. It should have been the best time of my life. I spent much of my summer in Provence drowning in melancholy. Later that year I found a physician who was willing to divulge everything. I've since gone through various moods and phases in my grappling with the truth, but I like to think that my initial reaction was the purest, most honest one, the one exempt from the tyranny of ‘the norm.’ I felt in those first weeks of knowledge that I was special, that I was some kind of angel.

Still, I've always been terribly anxious about how men would see me. Yet my worst fears have never been realized. I have told seven of the men with whom I've been intimate about having AIS. Only the first one, who was severely handicapped in the ‘ability-to-love’ department anyway, had some difficulty with my unusual route to femaleness, but not to the point where he rejected me. Mostly, I have encountered love, support and even a “so what?” attitude when I've shared my secret with men. (With one notable exception: in the rancorous period after my brief marriage broke up several years ago, my husband told a number of people that I was a hermaphrodite. I suffered greatly upon making that discovery, but now I just think there's no way to prevent the small-minded from being what they are.) A few men seemed to love me particularly because of my sadness and feeling of isolation. And for the past two years I have been living with a man who is very comfortable with what I am. Of course, the fact that I was lucky enough to be born with a functional vagina has made a huge difference. And, in comparing notes with my XX friends, I've learned that my sexual experience has been much like theirs if not better due to the fact that I have never had to worry about pregnancy – a worry that I would actually have welcomed.

After years of keeping tampons around in case any of my friends needed one, or lying about how old I was when I had my first period or the degree of my premenstrual syndrome, I gradually started telling friends, 10 years ago, why I couldn't have children, why I don't have any pubic or underarm hair, and why I have a scar. They have responded with empathy, support, fascination, admiration. And every time I've opened up to a friend, I've felt a closer bond with that person and at greater ease with myself.

Classic psychotherapy, which I’ve experienced in the last decade, has helped to me to deal with my AIS-related sadness and other issues. It's taught me that I've tended to blame much of my pain on AIS when in fact I needed to look also at family problems and social factors that harmed my self-esteem, often dovetailing with my physical condition in a kind of double whammy. Never having experienced counselling from someone who deals specifically with gender issues, I don't know whether that would have been more effective than psychoanalysis. But it strikes me that my psychiatrist helped to access and explore feelings that are part of the basic human repertoire and can be activated by various things – including AIS – but are shared by many different kinds of people. This was brought home to me particularly during the group therapy sessions in which I took part as an adjunct to individual analysis.

I wish for everyone else in the support group the love and support that I have been lucky enough to experience, after starting out my life with AIS expecting to be forever isolated.

In early 1998, Flora wrote an article called What Kind of Outsider?  for an obs/gyn journal.