Jack's Story

[Received Jan 2005]

My name is Jack I am 48 and I live in California. What follows is my story and how I became aware that I have gonadal dysgenesis and PAIS. Like many if not most who are born intersexed I was lied to about my condition and suffered terrible shame and humiliation regarding the big ugly secret of my condition. The telling of my story produces conflicted emotions within me because in doing so I risk appearing bitter, angry and ungrateful. Additionally I indite my parents who, given their circumstances and resources, did the best they could do. I admit my resentment for the medical establishment, which has evolved little over the last fifty years in its treatment of the intersexed and even yet draws on the discredited, falsified publishings of John Money regarding the shaping of gender identity, gender assignment and surgery. I no longer feel rage that my childhood was essentially reduced to my ambiguous genitals by the medical establishment and that my parents allowed this to occur. Instead I feel regret that the treatment I endured still occurs.

I am saddened as I realize how poorly my parents were served by the medical establishment when they were asked to have faith in a treatment ethic rooted in secrecy and deception. My parents were uneducated and uncounseled concerning the details of my condition and thus not equipped as how to best cope with their freak child. My mother suffered from guilt and anxiety and was unsupported by my father. My mother's feelings of guilt were compounded when my father, in ignorance and without logic, blamed her for my condition. My father's psyche was also bruised by my imperfection because my genital ambiguity reflected poorly on his masculinity. I was often aware of his resentment and disgust for me when he would make vulgar comments or jokes about my genitals. Sadly my parents are deceased so no opportunity for dialogue exists. I don't hold them culpable however, and understanding the reasons why my parents behaved as they did has allowed me to have compassion for the losses and confusion they sustained as a result of my condition. At this point in my life I have resolved most of the painful issues associated with being born neither fully male or female, in fact I have come to embrace my uniqueness and would not change anything other than my early medical treatment.

A few years ago I had occasion to see a urologist. While the urologist was taking my history I told him that I had been born without testicles. The urologist asked me why this was so. My response was that I did not know, but I was also surprised by his question. I was surprised because it had never occurred to me that in fact my condition could be the result of some syndrome or that there could be a 'why'. Until that day I honestly believed that I was the only one on earth born so freakish. Why else would my condition have been shrouded in so much secrecy and shame? The secrecy and shame imposed upon me caused me to feel isolated and alienated for much of my life. Eventually however the urologist's question provided the impetus to learn more about what I had worked so hard to bury and escape from in my day to day life. Escape was really not possible though because as soon as I undressed I was reminded again that I was a freak.

Sharing my reaction to the urologist's question of why I was born without testicles with my much trusted physician Dr. David Foster, Dr. Foster encouraged me to explore my condition by beginning with the ordering my medical records and reading them. When my records arrived I pored over them and quickly became aware that my gender was indeterminate until the age of thirteen months when a karyotype was performed and I underwent a laparotomy at a prestiegous children's hospital. The karyotype indicated I had XY chromosomes but it was also recorded that in some cells the Y chromosomes were abnormal. My laparotomy revealed one dysgenetic ovotestis which was biopsied but my records did not indicate if the dygenetic gonad had been removed, an important detail because there is a high probability for malignancies in dysgenetic gonads. Other than the one dysgenetic gonad no other male or female structures were found in my abdomen. Additionally a description of my genitals recorded my phallus as a clitoris/penis with labia and an imperforate vaginal opening but no vagina. I found this new information about myself more interesting than disconcerting.

I was disturbed that my records did not contain a diagnosis however because I had a tremendous need to know what to call this thing that had dogged me my entire life. Eventually I bulldozed my way into the endocrinology department of a teaching hospital and requested a new karyotype and my need for a diagnosis. The endocrinologist was helpful and willing to do the work to obtain the answers I sought, unlike the previous endocrinologist I had seen who chuckled when he saw my genitals. Within a few weeks I had my diagnosis, early fetal gonadal dysgenesis and PAIS, really more of a description than a named syndrome. Additionally no mention of abnormality was noted in my Y chromosome in this most recent karyotype. It felt wonderful to finally be able to know what to call my condition. I had also during my quest joined an internet support group for people with androgen insensitivity syndrome (AIS) and similar conditions. It was tremendously healing and insightful to connect with people who had suffered similarly as I had. The joy and liberation of learning that I was not a freak and that I was not alone in the universe was inexplicable.

In my quest to learn about my condition much of the misery I had endured growing up was rekindled. Like most of those who are intersexed my earliest memories included having my genitals examined, being photographed naked and being paraded before medical and nursing students. Every visit for my "check up" was an exhausting day. I had to be up very early for the sixty mile drive to the children's hospital for an 8:00 A.M. appointment that always started with the monotonous gathering of vital information, i.e. weight, height, ad nauseum. Waiting room waits of around two hours in dingy old rooms before being seen by the Dr.(s) were the norm. The Dr. almost always filled the exam room with onlookers as he measured my phallus, which never changed, poked around my privates and performed a rectal exam etc... all of this in front of an audience. The Dr. would would manipulate my genitals to provide the best possible vantage to all onlookers present. If any of the onlookers were interested they were also allowed to examine me as well. I always sat on the exam table completely naked and silent while my genitals were discussed, pointed to and handled.

Over the years I learned to escape the exams by imagining I was elsewhere. I was seldom addressed so it was easy to dissociate from what was being done to me. It felt as if my genitals were the only part of me that existed. There was always discussion and Dr. speak about pending surgery to normalize me, which terrified me but I was not allowed to ask questions about what normalize meant. I learned to bury my questions and fear since I had no apparent right to know. I did express once that I did not want surgery while I was in the exam room and the result was a suggestion to my mother that I be seen by a psychiatrist so that I would comply with the treatment plan. My mother was so threatened by the possibility of what I might say to a psychiatrist she became very angry with me and once we were out of the exam room told me in no uncertain terms that I would have surgery and that I was to keep quiet.

After being seen by the Dr. I was often sent to radiology for a bone age x-ray which followed another lengthy waiting room wait. From radiology I was usually off to the lab for the drawing of blood and urine tests. Perhaps the most degrading part of my "check up" was the regular photographing of my genitals and my naked body. The studio was a small cluttered room with a platform and a chair or two. I was instructed to undress and stand on the platform. The photographer would then take close up pictures of my genitals from every conceivable angle, legs together, legs spread as well as full frontal, rear and profile shots. My mother was always present for these photo shoots but I really didn't mind her required presence.

The last photo shoot I endured was not long before my eighteenth birthday and my father happened to be along for this "check up" so he was instructed to accompany me into the studio. I was so embarrassed and ashamed that he was about to see me naked that I was fighting back tears. I felt helpless, out of control and trapped. I was not allowed to express the turmoil I was experiencing. As I undressed and placed my clothes on the floor I could feel my father's eyes on me. I did my best not to look at him but for a brief moment I made eye contact with him as he stood with one leg propped up on a chair and a cigarette in his mouth while looking at me. I could see the disgust on his face. At that moment it felt as if time stood still. I was mortified to the point that the photographer had to repeat his instructions often because I was unable to concentrate on his words. I have never felt so vulnerable nor violated in my entire life, completely helpless and at the mercy of predators. I would have been far less traumatized if a stranger from the street had been there instead of my father. As I recount that event, even now I feel terribly small and vulnerable and as if I could cry but for some reason the tears never come.

My memory of my quarterly "check ups" began at around two years of age when I was the subject of a lecture. I remember being naked and held in a standing position by my mother on an exam table in a lecture hall. The lecturer wanted me to urinate into a bowl. I didn¹t have to go and he become impatient with me and told my mother to leave. I was so afraid of being left alone in the lecture hall without my mother that I screamed and cried in my terror. The lecturer, finally in a huff, relented and allowed my mother to stay but by that time I could not be comforted. Forty five years later and I still remember how frightened I was.

As a young child I believed I would grow up to be a girl and other children who saw my genitals expressed the same opinion. Perhaps at around the age of ten I became aware that I was not going to be allowed to be a girl when I grew up. I remember being pressured to act like a boy and do boy things. I recall that if I even so much as touched a toy stuffed animal I was severely reprimanded and I really liked toy stuffed animals. I felt very confused because I did not have normal male anatomy so how was I going to be a boy? I remember feeling very sad for a long time that I had to be a boy. I didn't know where I fit in. In private I would act out being a girl by putting a towel on my head and pretending it was hair and I would place rolled clothing under my shirt and imagine I had breasts. I was confused and conflicted and very afraid my parents would catch me acting out my fantasy and desire to be a girl, yet I was willing to risk exposure because of my longing. Eventually however I sadly accepted the mandate that I had to be a boy and so I wouldn't allow myself to think about wanting to be a girl. Feeling hopeless I became the boy I was assigned to be.

My adolescence was not easy. I was often withdrawn, shy and awkward and completely lacking in athletic ability. To compensate for the lack of ownership of my body and the resultant misery that buzzed around me. I became super competent in my studies and obsessed with my interests. Only in my studies or interests did I find respite from the lack of control that I experienced in my life and allow myself to feel emotion. Any challenge to my competence however was cause for a terrible upset. I was afraid when my competence was challenged that my tenuous grip on what I endeavored to control would slip.

To compound my misery I was also enuretic (a bed wetter). I was completely unaware of when my enuresis occurred during the night. I just always woke up wet. My parents were convinced I was too lazy to get up and use the bathroom during the night. Incredibly I was even blamed for a brief roach infestation as a result of my "filthy habit". I'd laugh here at the ridiculous logic if it didn¹t hurt so much. I digress. I explained to my parents time and time again, very often through tears that it occurred without my awareness but they never believed me. Up until the point of their deaths they believed I lied about this. Like many enuretics I was not welcome to spend the night with family for the reasonable fear that I would ruin their bedding. As a means of punishment I was shamed and threatened with the public display of my wet sheets and disclosure to the neighborhood children of my trespass coupled with the threat that I was going to be clothed in diapers and forced to stand in front of our house while holding a sign that announced that I was a bed wetter. Not until I was being medicated for an unrelated cause did my enuresis come unexpectedly under control. My Dr. determined that my enuresis was neurogenic. I now take anti diuretic hormone and for the last several years my enuresis has been controlled. This freedom from my enuresis has made my life so much easier and enjoyable. Had my adolescence been free of my enuresis I would have fared better during those difficult years.

By the time I reached high school I had been taking testosterone for a few years. My response to hormone replacement therapy was minimal. My voice dropped a little but I am often still mistaken for a woman when talking with a stranger on the telephone. I did grow a little pubic hair but what was now referred to as my penis never even grew to that of an infant even though my testosterone dosage was periodically increased. In an effort to mainstream me into as normal a male role as possible, I was required to shower with the boys after gym. I tried to hide my naked body as much as possible but when I was seen by other kids it was cause for much ridicule. My embarrassment only increased as I got older and the other kids developed but I stayed the same. Again I just tried to be as invisible as possible to endure the torture and cordon off my misery in my mind by not allowing myself to think about what was occurring. During this period of my life I remember my brother telling some neighborhood boys about my "little wiener" and kids being kids they all got me off to a semi-private spot and held me down while my brother pulled down my pants so that they could see. There was much laughter, joking and wondering if "it" could even squirt. I didn't bother to put up a fight, they just had their way with me and I disappeared into my thoughts in order to survive yet another episode of what seemed to be my circus sideshow life. I acquiesced to anyone who said drop your pants. Whenever I was examined, checked, molested, photographed or laughed at I emotionally disconnected from my body to avoid feeling anything. I didn't even think it odd when my mother wanted to "check" my genitals every week or two until I was eighteen, I simply complied with her request and checked out emotionally.

Soon after my high school graduation it was decided that I would be normalized. What that meant was, the implanting of prosthetic testicles into a scrotum fashioned from my labia. I was terribly frightened by the prospect of surgery. I was not allowed to talk about the surgery or ask questions. Alone with my fear, at times I felt like I would go insane. I remember crying quietly in the back seat of the car as we drove home from my final "check up" before the surgery. Once we were home I was unable to eat dinner but sitting at the table I blurted out that I didn't want surgery. My parents argued about the surgery. My father was angry about the expense and my mother believed I was not whole. My mother said that my wife would feel better if I had something down there and I countered that if she loved me it wouldn't matter. I recall my father saying what's the point, he doesn't have anything to offer a woman anyway and my brother chimed in, just give him a baggie and a couple marbles. In the midst of this insanity my greatest desire was to be left alone. I was sick and tired of being laughed at and made to feel guilty because I consumed resources. I was embarrassed by the hushed conversations in my presence regarding "it" by other family members. I had become reflexive to avoid the blows of shame and I was an expert at reading my mother's signals to avoid saying the wrong thing. My life had become hell. I felt as if I had been reduced to my genitals. I was alone and terrified.

Surgery was performed as scheduled and it went well. I was now the owner of uncomfortable plastic testicles, which still ache occasionally. Soon after my surgery I turned eighteen and I ran as far and as fast as I could from all my childhood misery. I requested that my medical records be sent to an endocrinologist close to my home. I would never again travel to the children's hospital. I would no longer allow myself to be displayed like some sort of lab rat or to be pawed over by clumsy students. I assumed responsibility for myself and moved away from home into my own apartment. For the first time in my life I felt some inner peace free of the turmoil of my childhood home and garnered some self direction. I worked at a kennel to support myself and to indulge my intense interest in animals. The people who employed me were very kind and loving and became my surrogate parents providing guidance, support, encouragement and spiritual insight. Had it not been for these selfless people and the wonderful example of their lives I don't know what would have become of me. They started me on a path of much happiness and self acceptance. I began to ascribe meaning to my life and what I had endured via biblical scripture, especially from Psalm 139. Having been born with an intersex condition seemed to only make sense to me in light of scripture.

By most accounts I have been successful in life and done well. I live what most would consider a desirable life in spite of all I have endured and I would be so bold to even say because of it. I went to college, trained as a professional and have worked in various positions related to my training in veterinary medicine. I have enjoyed a rich and satisfying marriage. My wife and I recently celebrated our silver wedding anniversary. My intersex condition has essentially been a non-issue in our married life save for my inability to reproduce. We could have adopted children but the need to do so never reached the point of critical mass in either of us it seems. We have however served as Godparents to many of the children of friends and family. We have shared a life filled with many hand in hand walks on the beach, stolen glances at each other across crowded rooms which conveyed the message, I can't wait to be alone with you once again and many fond memories too numerous to count. Like every other couple we have been faced with the hurdles of illness, grief and heartbreak at times, we have thus far always emerged, sometimes battered and other times stronger, but always together. I regard my marriage as my single biggest blessing in life. I have been blessed with loving and meaningful friendships. My wife and I built our home on mountain land we purchased soon after we married, another dream realized.

I have had the good fortune to operate businesses of my own making. I am now retired from the animal field but went on to complete another degree in art and design and now I paint. I have work on several continents and have been working to establish myself in galleries. My life is truly rich and satisfying. Like anyone, life throws curves at me now and then, and there have been obstacles to overcome or accept. I live as a man with as much integrity and dignity as possible even though my brain was not virilized in utero because of my inability to produce testicular androgens. I have at times felt ill equipped and even fraudulent in my attempt to be and think as a man. Over the last few years however I have stopped trying to be a man. Instead I have focused on being myself and that includes an appreciation for my more feminine self that a "normal" man would not have. I am not ashamed of that which is feminine about me because it is a natural component of how I was created. At one time I would wilt in embarrassment when people would call me ma'am or refer to me as the woman they had spoken with on the telephone, now however I am completely unashamed of who I am and such experiences are meaningless to me.

I am hopeful that changes in medical treatment and the ethic by which that treatment is delivered to those born intersexed will occur. I am also hopeful that those changes are motivated by what is best for the child and not the best strategy to avoid potential litigation. I believe that my medical treatment was executed by the medical establishment with the best of intentions and without malice. The shame and secrecy associated with my medical treatment caused me to feel isolated and like a freak however. My isolation and shame were reinforced by the intense shame my parents felt concerning my condition. Had my parents been appropriately educated and counseled about my condition they may have been better equipped to deal with their own emotions and support each other and ultimately me. Tragically this cloud of shame even yet casts its dark shadow upon the treatment ethic of the intersexed. Consequently when a child is born neither fully male nor fully female it is somehow considered a medical and social emergency and the well intentioned but misguided medics who rush in to fix the "broken"child more often than not do real and lasting harm.

The emotions experienced by many intersexed children as a result of current medical practices are quite similar to the emotions experienced by children who are the unfortunate victims of sexual or other abuse. The emotions experienced by children who have endured sexual or other abuse such as secrecy, shame, fear and a sense of personal responsibility for what has occurred are very similar to the emotions the intersexed child feels. As in childhood sexual abuse very often the parents are aware of what is happening to the child but remain quiet as the child is reduced to an exam table specimen resulting in feelings of abandonment, betrayal, guilt for being born so freakish etc. When an intersexed child is subjected to seemingly endless genital examinations, genital photography, unexplained procedures and not provided the opportunity to voice concerns or fears, many eventually feel hopeless and helpless and may question the value of life itself.

If I was the only intersexed person who had endured the sort of treatment that I did, it could be dismissed as unfortunate or as a statistical fluke perhaps but it is sadly the norm. It is tragically the norm! Nearly ninety percent of those born with intersex conditions who have been surveyed suffer or have suffered from anxiety disorders or other psycho pathologies. This is a heinous commentary on the state of care for the intersexed. Thousands of the intersexed have expressed discontent with their medical care, gender assignment or surgical result but their protests and concerns go largely unacknowledged by the medical establishment. Certainly there are those who are satisfied with the treatment they received but most drop out of sight as soon as they are able to, in an attempt to put what they have suffered behind them. Consequently few follow up studies have been conducted to assess how these people are faring.

Intersex conditions are not a public health threat, no one dies or gets sick because they are born with atypical genitals except perhaps for those born with congenital adrenal hyperplasia or if there are problems associated with the urinary tract (then certainly all appropriate medical care should be employed for the child's health). There is no legitimate immediate need to normalize a child surgically for cosmetic reasons if the parents are appropriately counseled. For practical purposes an intersexed child needs a gender assignment but that assignment needs to be as fluid as possible. Premature surgery may forever restrict or complicate the ability of the child to express the gender they identify most closely with or feel best suited to express, possibly leading to terrible unhappiness. In that vein, I consider having my prosthetic testicular implants removed because to me they are a symbol of deception and suffering. I am restrained however by the monetary and emotional price paid by my parents in their struggle to provide for me. As a result, I feel I honor them and their sacrifice by not having the implants removed.

Generally families of lower socioeconomic status may require more mental health services in coping with their intersexed child. They may need the reassurance that they are not feeble minded or crazy for needing these services and that mental health professionals need to be a part of the treatment team. In my opinion mental health professionals are more important than the endocrinologist, urologist, surgeon or geneticist. What a difference my treatment experience might have been had I been given the opportunity to talk about what I was experiencing without fear of reprisal or as a ploy to win me over to a treatment plan. Additionally intersexed children need to know that they are not alone and if at all possible be allowed to meet and play with other intersexed children.

Parents need to be made aware that their child has a biological condition known to medicine and science in which disparity exists between the gender of the chromosomes and the gender presentation of the body, i.e. karyotype and phenotype. Parents need to be made aware that their child is not a transvestite, cross dresser or transsexual i.e. a person with a normal male or female presentation and normal chromosomes but who is dissatisfied with the gender of the body they inhabit. I realize that there is raging debate about this issue among the above groups and that they have an agenda to advance but currently gender dysphoria is regarded as a psychiatric condition and those with biological intersex conditions are excluded from this group.

Parents will benefit from support groups and the opportunity to speak with intersexed adults who are living full and satisfying lives. Removing the secrecy and shame and providing a forum for people to discuss their concerns regarding their intersexed child could go a long way to easing the minds of parents. Intersex conditions occur generally about one in two thousand births. This is about the same frequency as multiple sclerosis or about half as often as Down's syndrome. While not common, intersex conditions are certainly not rare. Let us not scar or alienate another child or family because of an antiquated, ineffectual treatment regimen.