Melody's Story

[Received April 2003]

My name is Melody. I'm a 33-year-old technical writer for an architecture and engineering firm in the southern United States, who just happens to have CAIS.

My journey began in the '70s when I was in grade school. I developed an inguinal hernia on the right side when I was around 7 or 8 (I think), which my family doctor diagnosed as a swollen lymph gland (heaven forbid). He told my mother to apply pressure to it and it would eventually go away (again -- heaven forbid). The pressure was incredibly painful, but we did it anyway, hoping the bulge on my right side would go away. Obviously, it didn't. Eventually, my family doctor passed away, and my mother sought a new doctor in 1982 who correctly diagnosed me with an inguinal hernia (assumed it was from gymnastics or something), and scheduled me for surgery.

Side note: I had no brothers or sisters, and no one else in my family that  I know about has had AIS. There was no reason to suspect it.

The rest of my story may seem pretty familiar.

I went into the hospital for hernia repair surgery in 1982 (at age 12). When I woke from surgery, I was bandaged across my whole lower abdomen, and I clearly had a much larger incision than the 1.5-inch incision they had described before the surgery. No one (parents, doctors, nurses) seemed enthusiastic about explaining why, and I let it go for the time being. During that hospital stay, I remember a nurse giving me a shot that he described as a "hormone" shot. I asked why, and he said, "Your parents will explain after you go home." I suspected something was seriously wrong, but I let it go. I was only 12. A couple of weeks after the surgery, I remembered what the nurse had said, and I asked my parents about the hormone shot. They sat me down, and my mother began crying and said, "Mel, you can still adopt..."

The only thing my parents told me at that time was that my uterus had failed to develop, and my "ovaries" didn't develop properly, so they had to take [out] what I had (a "hysterectomy"). My gynecologist (who I will from this point on refer to as "Dr. Liar-Liar-Pants-on-Fire") never explained anything beyond the things my parents had told me, and only explained that I would need to take HRT for the rest of my life. If I didn't, I would die (I'm not kidding, that's what he told me). He also explained I'd need a vaginal dilator before I could have sexual relations; otherwise, I could bleed to death. (He was a little fixated on me dying if I didn't follow his advice).

When I had the surgery at age 12, I was already 5'7" or so, had well-developed breasts and only sparse pubic hair. Many of you can probably relate to the fact that gym was no picnic in junior high school. I felt different from the other girls. I wouldn't undress in front of others. I even envied them their menstrual cycles, and I still feel that not having one was a rite of passage that I somehow missed.

Throughout my teen years, I had follow-up visits with Dr. Liar-Liar-Pants-on-Fire, who continued to sing the "You Had a Hysterectomy" national anthem. I got married very young, at age 18, and even after I was a grown woman, a married woman, Dr. Liar-Liar-Pants-on-Fire still never told me the truth. I never heard the term AIS (or even Testicular Feminization) until around 1990, when I was 20 years old. My husband's health insurer wanted medical records from my surgery before they would put me on his policy, so I went to the hospital and picked up the records from the surgery. I sat in the parking lot at the hospital and read them with my mouth hanging open, thinking they must be a mistake. I remember the first sentence in Dr. Liar-Liar-Pants-on-Fire's surgical report: "Testicular Feminization Syndrome is a genetic disorder that occurs only in males." I read it again and again, and convinced myself that it was a typographical error; he meant "only in FEmales." The report detailed that they had removed gonad tissue from inside the hernial sac on the right side, and had found and removed gonad tissue on the left as well. It detailed the recommendations for HRT, etc., and detailed every last doctor they called in for consultation during the surgery ("The Panel of Buffoons" I call them). The final sentence written by Dr. Liar-Liar-Pants-on-Fire: "Thank you for this most interesting and unusual patient."

I confronted my parents with the information (not the gender aspect, which I didn't fully grasp at that time), but at least the things I had read that contradicted the "hysterectomy" theory. They swore they weren't given the full story from Dr. Liar-Liar-Pants-on-Fire, which I didn't believe for many years, but have finally come to understand was true. Dr. Liar-Liar-Pants-on-Fire deceived us all. I stopped seeing him for follow-ups, and I stopped my HRT as well. No more doctors, no more pills, no more feeling like a freak for me.

I didn't get the full story on AIS until many years later. I had divorced and remarried, had gone on to college, had made a new life for myself. My husband (we're now divorced as well), a U.S. Navy Russian linguist, had suffered a long battle in the mid-1990s with cancer (non-Hodgkin's lymphoma), including a bone marrow transplant, and frankly, my concerns about my own health were secondary to absolutely everything else in my life (He's now in remission, and has been in remission for about five years). In 1999 (I was 29), I was watching television. "E.R." (You may know the rest of the story here). I saw that horrible, horrible episode of "ER" [see Debates/Discussions] that many of you may be well familiar with, where a young girl was taken to the emergency room with an inguinal hernia. Her name was "Barbie" (an obvious attempt by the writers --another panel of buffoons -- to go for the Barbie/Ken joke). When they described her condition, I knew. I just knew. I began to cry, and I confirmed that my husband was sleeping, terrified he'd find out what I had just learned. I got on the Internet and began digging for information about AIS, when I stumbled across the web site for the support group.

I contacted the U.S. support group, and spoke with the president of the group at that time, which was wonderful -- a kindred spirit! She knew my pain. She had been through so many similar circumstances. I had a wonderful, wonderful conversation with her, and I began to slowly accept the reality of CAIS in my life. Later in 1999, I was preparing to go to England for the summer (I went to school at Oxford University that summer for a study abroad program), and I found information about Dr. Lih-Mei Liao's study of communication issues related to AIS, and the timing worked out for me to meet her and several other AIS women at Middlesex Hospital in London. It was WONDERFUL to meet other women in person who understood what it was like to live with AIS, and especially who understood the betrayal of dishonest physicians (like Dr. Liar-Liar-Pants-on-Fire). What an amazing experience that was! In the months that followed, I subscribed to ALIAS, but never got much more involved with the group. At the time, I wanted to participate further (and attend a national meeting sometime especially), but I still felt uncomfortable with all of it, especially discussing it with my husband.

Now, I've once again started over in my life. My husband and I are divorced (not for reasons of my AIS, thank God), and I'm living in the town where I was born again, a mile from the hospital where my story began. Dr. Liar-Liar-Pants-on-Fire is a wealthy gynecologist in a town about 25 miles away, and I pray each day that his butt cheeks will grow together and he'll just explode -- just kidding!!! Seeing if you were still paying attention at this point). I'm finally, FINALLY, comfortable in my own skin. I don't feel compelled to keep my AIS well hidden as I once did (a taboo subject for SO many years), and I trust those close to me with the truth. If they don't understand, if it makes them uncomfortable, then I believe I don't really need them in my life.

Now, AIS doesn't affect my day-to-day life. I only think about it when I get the blank stare from doctors and nurses (the eternal frustrating question from medical professionals: "What is AIS??"), and I think about it occasionally as I'm beginning to date again. I'm careful not to date men who ever want children, because that's been a painful subject for so long. I don't broadcast it to men I meet immediately, but it's something I know any man in my life will have to understand (accept) if we're to have a real relationship. I battle bone density problems (I was diagnosed with osteoporosis in 1999, which has improved to osteopenia), but I trust that everything will be okay as long as I care for myself properly. I've been back on the HRT (industrial strength) since 1999.

Now, I'm don't feel like an "AIS Patient", a "CAIS Sufferer", or a "Freak". I'm 33 years old, happy, gainfully employed, generally healthy, and I happen to have CAIS. So be it. I live with it. It's been over 20 years now since my surgery, and over 10 since I first saw the words "Testicular Feminization", about 4 years since I knew the truth about AIS. I finally know the truth about myself, and even as painful as that was, it's better -- FAR better -- than living in the darkness of NOT knowing what happened to me and why.