Sherri's Story

1) The following article by Sherri was written shortly before the first AIS Support Group meeting in March 1995. It appeared in ALIAS No. 3, Winter 1995 (using the pseudonym Jane Carden) under the title 'Learning to Speak at 36'.

Twenty five years ago, as my girlfriends were getting their periods, I was told a lie. It went something like this: “When you were born, your ovaries were twisted. And a very smart doctor discovered this because he saw that you had hernias. Well, these twisted ovaries were at risk of becoming cancerous. So, to prevent this from happening, when you were just a baby, they removed your ovaries, to make sure that you didn't develop cancer.” I have an IQ in the top one percentile. Something in this story just didn't make sense. That night my father told me that he was proud that I didn't cry when my mother told me [the lie]. He was proud; I was numb.

A few weeks later my mother took me to a reproductive endocrinologist. He wrote a prescription for Premarin, told me I would have to take it for the rest of my life, that I would never have babies and never have a menstrual cycle. From that day forward, no one in my family has ever again spoken to me about my medical condition – not my parents and not my elder brothers, one of whom is a medical doctor and the other a clinical psychologist.

At age 20, I was in my first year of law school and in the habit of studying in the medical school library. I visited the library late at night to avoid being seen poking around the shelves. In those days before computerized medical databases, I worked with the huge Index Medicus, beginning with the extensive entries for ’oophorectomy’ (removal of the ovaries). After several weeks of poring over medical texts and comparing the appearance of my body with the clinical photographs, I reached a firm diagnosis – testicular feminization. Not an oophorectomy, as my parents had told me; the doctors had removed my testes. Alone and frightened, between the deserted shelves of the medical library in the wee hours of the morning, I learned that I was a ‘male pseudo-hermaphrodite’.

This discovery didn't really change my course of treatment. At age 17, I had decided to stop taking Premarin and stop going to doctors. I stopped taking the hormone because no one had ever given any reason why I needed it other than the absence of ovaries. If I needed a pill to make me ‘female’, then I preferred to allow myself to be whatever I would be. Quite honestly, there was no perceptible change after I stopped the prescription. My decision to drop all medical care was the direct result of the humiliation and obfuscation I had been subjected to over the prior seven years. Junior hospital doctors were paraded past my vagina when I was 14 or 15. I was never told about my prospects for sexual intercourse. Not once was I asked how I felt about any of what had transpired. I was a patient with a terrible secret that even the doctors and my own mother couldn’t, or wouldn’t, discuss.

Last year I resumed medical care, because I decided that I needed to start dealing with all of this. I learned that years of hormone depletion had caused my bones to lose mass. My bone density is now so low that I am at immediate risk of spontaneous spine and hip fractures. I had been completely unaware of the connection between oestrogen and osteoporosis. I also learned [at this late stage] that I would need to use a series of increasingly large lucite ‘tampons’ to dilate or extend my vagina, if I wanted to be able to have vaginal intercourse. I would have liked to believe that the medical community is now more in touch than it was when I last saw a doctor 18 years ago. It isn't. The first three times I visited my new endocrinologist, the intake nurse asked when my last menstrual cycle was. When I answered that I thought the doctor wouldn't need to know that, she told me, "Oh yes, Dr. _________ specifically asked me to inquire." When I told her I didn't have menstrual cycles, she said, "Oh, hysterectomy, huh?" To those who have experienced menarche, this might not seem like much of an issue. Some might think it a relief not to have periods. But imagine everyone from gym teachers to best friends asking about your nonexistent periods. I simply do not know how to answer such questions.

Since resuming medical treatment I have repeatedly and persistently asked to be put in contact with other AIS patients. The answer I always got was "why would anyone want to talk about it?" I was regarded with suspicion for even asking. For the past twenty five years I believed I would live my life never being able to share my secret with anyone. I had never discussed this syndrome with any person other than doctors until last year. I had hit a wall and felt that my life wasn't working and I didn't see much point in continuing. I sought professional counselling, taking care to avoid psychiatrists, who are medical doctors. The social worker I turned to has been quite helpful in allowing me to express the thoughts that have been bottled up within my mind for most of my life. But still I was unable to locate another soul who knew what it feels like to inhabit my body.

Then, on December 26, 1994, something called me to return to the medical library. There, I discovered in the British Medical Journal an article and two letters describing, not case studies, but real human beings with AIS. One included the phone number of a new support group in England. For two days, I rehearsed what I would say to the person who answered the phone at the support group, how I would maintain my composure; talking about this condition inevitably reduced me to tears. Somehow I got the words out in between sobs. I was amazed to learn that many people who contact the group are in a near hysterical state because of the complete lack of emotional support they have received.

In Spring 1995 the inaugural issue of their newsletter, ALIAS, announced that their first meeting would be held in March. Within the hour I was booked on American Airlines flight No. 105 to London. Next week, for the first time in my life, I will meet other people with AIS. I will meet others who understand the fear, humiliation, shame and secrecy which surround my status. I have been locked in a closet for 36 years. But from this moment I am committed to dedicating all my resources, emotional and financial, to ensuring that no one suffers a lifetime of emotional neglect because of a ridiculous social taboo.

2) The following article by Sherri appeared in ALIAS No. 9, Autumn 1997, under the title 'Reflections on AIS' and also in Dr Garry Warne's parent/patient booklet on CAIS (see Literature (ALIAS etc.)/Subscriptions) published in the same year:

My arrival into the world 38 years ago was a joyous occasion for my family because I was the first girl after two sons. However, ten days after my birth I developed hernias. Surgery performed at that time revealed that I had testes. A buccal smear confirmed the diagnosis. I had AIS.

Like many women with Complete AIS who were raised in less enlightened times, I was not told the truth about the condition. Instead, I was left to figure this out for myself in a medical school library at age 20. I think this is unfortunate because I have experienced more emotional pain about the fact that my family didn't tell me the truth than about either my gonads or my chromosomes. I believe that with appropriate family support and counselling there is no reason any young woman with AIS should be destroyed by this knowledge. Having said this, however, I think it is only reasonable to assume that any young woman who is told the truth with go through a period of grieving. To my mind, this is a natural and healthy part of coming to terms with having any disorder.

It is unfortunate that doctors (and sometimes parents) overlook the difficulties faced by a young woman who does not have a menstrual cycle (which is a coming of age rite on the road to womanhood in this society) or pubic hair. These seem like such minor losses at one level, and yet they are very real sources of anxiety for those of us who have to face them. I remember all of my friends talking about getting their periods and feeling excluded from the discussion, terrified that they would know that I was different. To this day I have trepidation about anyone seeing me naked from the waist down, for fear that they will be shocked at my lack of pubic hair.

I also hope that doctors will investigate a range of options for dealing with the issue of vaginal hypoplasia. This has been a real problem in my life and I am dismayed that the medical community expends so much money and energy developing new infertility treatments but so little effort at developing new techniques for dealing with the critical issue of vaginal length. While this fortunately is not a problem for many of our members, for those of us who have shortened vaginal length, it is of utmost importance.

Being unable to have biological children has, of course, also caused me some sadness. But I have chosen to invest my energies into my career and friendships and know that for me having children is a blessing I will not enjoy in this lifetime. I do, however, have several friends who have AIS who have adopted children, or have had children through surrogacy. Having met their own personal challenges, I believe these women are especially well-equipped to help their children come to grips with the emotional challenges of being adopted.

The road to healing the emotional scars experienced as a result of having AIS has been a long one for me. But the most critical element has been my involvement with the AIS Support Group. Meeting other women who have shared my experiences, and being able for the first time to have a community of friends who know what it is like to deal with the issues I face, has provided me with countless benefits. I feel so much more at ease with the whole concept of AIS.

I have now told several close friends that I have AIS, and am continuously amazed that by sharing my secret my friendships have only been strengthened. Indeed, I have found that sharing my most intimate secret with friends has freed them to share their deepest, darkest secrets with me.

It is wonderful that there is a support group to offer the latest information about AIS as well as emotional support and encouragement. I now have friends around the world who have AIS-- this has been a wonderful "fringe benefit" of being involved with the group. We talk, laugh, cry, and bond together. Meeting bright, interesting women with AIS, and not feeling at all put off by the fact that they have AIS, has allowed me to understand how others could see me in a similar light. What a huge burden this has lifted from my shoulders!

As odd as it may seem, in the final analysis I feel that AIS has been a blessing in my life. I think I am a more comapssionate and intuitive person because of the personal pain I have experienced. AIS has forced me to base my self-identity as a woman on strength of character and warmth of spirit rather than more superificial physical attributes. And as I often say, if I didn't have AIS I would have gone through life like my two older XY brothers- instead I believe G-d intended me to be female; AIS was the route it took to get me there.

If you're reading this and either have AIS or are the parent or relative of someone with AIS, I extend my hand in welcome. I really look forward to meeting you!

Sherri

3) The emotional impact of having to take HRT from an early age should be considered when advocating early gonadectomy. Sherri sent this email to an AIS email discussion circle in Sept 1997. It appeared in ALIAS No. 13, Autumn1998, under the title 'The Pills, The Pills':

Many members of the support group have told me that they did not take their HRT pills [when they were younger] because they were a daily reminder of 'being different'. By ignoring taking the pills, they could hide from the disorder. The decision not to take the pills may be the only element of control they feel they have over a situation in which they largely feel a complete lack of control. In my own case, the only thing my mother would ever mention about AIS (well, of course she never actually told me I had AIS – so the only thing she ever told me about my 'twisted ovaries') was to ask me if I was taking the pills. I was so angry at her for only being concerned about my physical welfare, and pretending there was no psychological trauma associated with all of this, that I rebelled by not taking the pills. In an odd way, the pills became the embodiment of all my hurt, anger, frustration etc., as though the pills were the cause of the problem and without the pills the problem would just go away.

Moreover, my mother would make me go to the pharmacy to have the HRT prescription filled. I was consumed with fear that the pharmacist knew that there was something terribly wrong with me, and that just by presenting the prescription he would know exactly what that something was. I didn't understand at the time (about age 11) that there were many reasons why someone might be taking Premarin – I thought it was a specific drug just for my own condition, so that by looking at the prescription the pharmacist would know that I had 'twisted ovaries' and that I couldn't have children, and didn't have pubic hair etc.

As I got a bit older and understood that 'old' ladies took Premarin as hormone replacement, I felt equally embarrassed that I, as a teenager, had a prescription for the same drug. I knew that even if women in their 30s had had hysterectomies and needed HRT, it was still grotesquely abnormal for a 12-13 year-old to be turning up with a prescription for it. I was also terrified to carry the pills in my purse for fear of discovery. When I was in college, I was afraid to have them even in my dorm room for fear of one of my friends stumbling across them while looking for something else. It was about this time that I stopped taking HRT altogether. Whereas my mother dragged me to the reproductive endocrinologist as a teenager, once I was living away from home, I just couldn't summon up the strength and courage to locate and be examined by another doctor, which was a requirement if I was going to get replacement prescriptions for HRT.

I have spent a good deal of time in therapy discussing and crying over the trauma of being on HRT at an early age. I cry over the fact that at a time of life when all of my friends got their periods, I instead got a pill. I didn't want 'womanhood from a bottle'. I desperately wanted to cross over the threshold to womanhood in the same way as my friends did -– by having a menstrual cycle. When I resumed taking HRT in my 30s (I stopped taking it from age 17/18 to age 35) it was a cathartic moment to walk into a pharmacy and hand the prescription to the person behind the counter. It brought back a flood of memories.

I think doctors still only prescribe progesterone [in the HRT] if you have a uterus. That penny dropped at age 18 years, after an experience I had in college which was the last time I saw a doctor until I was 35. I went to the college infirmary to request a new prescription for estrogen. Can you imagine doing this at a small college infirmary; but I didn't know where to begin to find a doctor in a small college town (and I went to a predominantly women's college so I was also curious to see if the doctor was familiar with this 'twisted ovaries' thing). Deep down I was secretly hoping that he was, and that this was something he saw frequently and that it was only my mother's overprotection that caused her to take me to the specialist reproductive endocrinologist.

Anyway, when I told him I needed a prescription for estrogen the first thing he said to me was “Do you have a uterus?” I felt like such an idiot because I had no idea. No one ever told me. A minute or two later he had me naked from the waist down on an examining table, told me I didn't have a uterus, wrote a prescription and didn't say another word to me.

I never saw a doctor for anything (not the flu, not a cough – anything) for the next 18 years. Now that I'm writing this, I'm sure he must also have asked me why I needed estrogen and whether I had ovaries, but I must have completely blocked this part out. Any discussion about ovaries was so traumatic for me. It feels like when I was a teenager I even stuttered the words “ttwwiisstteedd oovvaarriieess” in my mind when I thought about it. What a mess!!