Elsa's Story

our situation. Two of our aunts also have Complete AIS. We were told we had double hernia at birth. At 13-years-old I started going to Duke University Medical Center every summer. I knew my female parts were messed up but they told me I had ovaries with tumor potential and that they need to come out before I was 20. They also informed me of McIndoe Procedure and Frank's Pressure Dilation Method and encouraged them. They gave me glass test tubes [for dilation]. My cousin told me it was called "Testicular Feminization Syndrome." When I mentioned this to my new female OB-GYN, we looked it up in her book together one year ago. She was very warm and kind. This is when I first heard of AIS. I asked her to get my medical records from Duke and there it was: "Diagnosis: AIS." I don't remember hearing Testicular Feminization or AIS ever. My parents act like they don't know any of this. They're surprised to find out all this new information--not as surprised as I was! I then searched on the computer for Testicular Feminization and AIS and found the support group.

I always felt different. Like I did not fit in. Left out. No cramps, no periods, no shaving under my arms. I did not feel like I fit in with girls or boys. I always felt more mature than people my own age. Quieter, more reserved. I was very active in things. I clogged, played the drums. I was most talented in my junior year of high school. Senior year I was FHA president, first runner-up in the Senior Beauty Contest. I've always been very honest, loyal and trustworthy. Now I am 32, divorced 10 years. I think I'm homely and frigid. Ha Ha. I've always been very attracted to men. I just can't seem to connect with anyone. I keep everyone at a distance. I'm afraid if they knew the truth about me, they could not deal with it. So I don't date. I have a dog and a horse. I feel like God thought I could do more good in this world as a woman, but he had a hard time choosing. I always wanted to grow up, get married, have a family. I feel hurt that I'm not normal like my sisters. They both have beautiful children. I feel like my sisters are close to my mom and I am closer to my father. I am the oldest of 3 girls. I guess if there was one word to explain how I feel it would be: Alienated or Confused.

It made me feel comforted to find out we are not alone. I felt like my aunts, cousin and I were alone in this "freaks of nature." I blamed it on WWII where my grandfather served. I though maybe because my grandma had 9 daughter maybe her body was exhausted, stressed. I though maybe God was punishing me for something. I guess looking back on my life now I feel that women are often untrustworthy and men are just boring as hell. I often question who I am and why I'm here. I guess we all do that...or maybe not.

Part of me wishes they had been honest and told me the truth. Another part understands why they did not. It's a lot to swallow, even now. With my marriage I always wondered what "i" didn't I dot, or which "t" didn't I cross? Did it fail because of my AIS? I always tired to overcompensate. Overachieve in my life because I felt something was wrong with me, because I was not like every other woman. I always had to do it better and do more. Now I just try to take life one day at a time. I'm very lonely sometimes. But I felt because of who and what I am, it's best for everyone for me to be alone.--I've found peace in the quietness of my simple uncomplicated life.

One of my favorite movies is First Knight. I tear up every time Sean Connery says he has not lived without feeling the warmth of love's sunlight on his face. I've know true love once in my lifetime. I should thank God for that. Cherish the memories I have. But another of my favorite movies Blade Runner has this line: "I've seen things you people wouldn't believe. All those moments will be lost in time, like tears in the rain." And because of AIS I have seen and felt and experienced some things that no one else ever could, that no one else should ever have to. To be poked and prodded like a lab rat, stared at like you're from another planet and talked about like you're not in the room. I would not wish my life on anyone, even an enemy. I remember laying there, with my feet in the stirrups. Holding a nurse's hand while 2 or 3 men looked at me. I was just a child. I was so ashamed I turned my head away and watched the tress outside, the squirrels playing.

I wish I could have had counseling. Someone to talk to about what was going on inside me. My body and my mind. What is right? What is wrong? What is truth? What is a lie? Who am I? What am I? Why do I feel this way and how can I change these behavioral patterns? Does God think I am a man because I am a genetic male? Should I be attracted to women? Why do I love pink and hate sports? Why do I think my dog loves me more than any man ever could? Stupid stuff. My chromosome does not matter. The depth of my vagina does not matter. What matters is my heart and my mind. How isolated, lost and alone I feel. Tell them to work on our hearts and our heads will follow. Tell them we need hugs and love just like everyone else. Maybe even more. Treat us with love and respect. Not like a genetic error.

God made us all different for a reason. What some of us lack in female parts we more than make up for in love we have to give. One of my favorite poems says: "He who suffers most, has most to give." I believe that. Another says that the smile that's worth all the treasures of earth is the smile that shines through the tears. Thanks for listening. It has taken all that I've been through to make me the person I am today. I like her a lot. Maybe someday someone else will too. I have hope. That's also my puppy's middle name.