Just Your Average XY Girl Next Door

What it's like growing up Intersex.


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My earliest memory of this journey is my mom taking me to the doctor and having a pelvic exam at age thirteen. She was worried because I was not developing breasts and had not started my period. After a couple of visits to the family doctor they decided that I needed to go to a specialist at the hospital. I remember being taken into a room by two doctors and told to disrobe and put on a hospital gown. My parents remained in the waiting room. Then they had me lay on the medical table, put my feet in the stirrups, and spread my legs at the knees. I remember feeling so self-conscience. Then the two doctors started poking and prodding me, inserting fingers and medical utensils inside me. I remember wincing in pain. I suppose this is how I lost my virginity.  Then they brought in more doctors to look at me and touch me. I’m not sure how many doctors ended up coming into the room to see my “abnormality”.  In my mind, it seems like there must have been at least twenty. When I close my eyes and think back to that day, all I see is a room was filled with white coats. I felt like I was a freak show. Even now, many years later, just the sight of a white coat makes me anxious. Looking back, because I felt like I had no choice about what was happening, I consider this the first time I was raped. I know I really wasn’t raped, but that is what it felt like. After the doctors were done with me, they told me to get dressed and have a seat. I did as they asked. Only two doctors remained in the room with me. They sat in front of me and told me that I had abnormal ovaries that should be removed because they were pre-cancerous. I was informed that I could never have biological children, but I could have a “normal” sex life.  They brought my parents back and told them the same thing.  About then, I think I must have went into shock. I didn’t cry. I didn’t ask any questions. I didn’t respond. I couldn’t bring myself to speak for the next three days. Worse yet, I spent the next fourteen years of my life worried that the cancer would come back.

 

I am not sure how much time passed before I had my surgery. I think it was a couple of weeks. I was admitted into the hospital and was assigned a room in the pediatric ward. The two year old little boy in the room with me was a burn victim. He had pulled a pot of boiling water off the stove and on to himself. Any flowers sent for me had to be taken directly to my home, because there couldn’t be any pollen in the room. I remember feeling so sad for the little boy. His parents stayed with him day and night. Secretively and selfishly, I was so glad that they were there because I was very frightened and I didn’t really know what was going to happen to me next. I don’t remember much before the surgery, but I do remember being wheeled back to my room on the gurney after the surgery.  It felt like they were hitting every crack and hole in the floor. It felt like my stomach was being ripped apart. They gave me a shot for the pain when I got back to my room.  I fell back to sleep for a few hours. When I woke up they wanted me to empty my bladder. I tried, but I couldn’t. They inserted a catheter inside me to drain my bladder. They kept me in the hospital for a few days before I could go home. I remember forcing myself to walk, wheeling my IV up and down the hospital hallway, each time trying to stand up a little straighter and not walk all hunched over. I was pretty much sliced from hipbone to hipbone across my lower tummy, so doing anything except lay on my side with a pillow against my stomach was pure agony. When I finally got home, my mom told me that the doctor said to tell people that I had my appendix removed.  She said that no one would understand what really happened, and people would make fun of me if they knew the truth. I couldn’t figure out why someone would make fun of me for having pre-cancerous ovaries, but I did as she asked.  

 

After the surgery, I had monthly doctor visits to make sure everything was progressing the way they had hoped. Each time the doctor would do a pelvic exam and ask me if I had a boyfriend and if I was having sex yet. This led me to believe that I better get a boyfriend and have sex, otherwise the doctor would not think I was “normal”. So I did just that. I found a boyfriend. It took a while to work up the courage to have sex, especially since I was so self-conscience of my body with the scar across my abdomen and the bald vagina between my legs.  Finally, at my 15th birthday party, my boyfriend who was a year older than me, told me that if I didn’t have sex with him he was going to break up with me.  I panicked because if I didn’t have a boyfriend the doctor would tell my parents that something was wrong with me.  That, along with what I now recognize as low self-esteem, pushed me into my first consensual sexual experience.  I absolutely hated it. I ripped and bled. It hurt so bad. Then after the sex was over, he broke up with me anyway.  However, we got back together a couple of weeks later.  I mean, of course I took him back. I had no internal lady parts, looked like an eight year old on the outside and was desperate to feel like a normal teenage girl. We continued to have sex. Each time I ripped and bled. I was too embarrassed to tell him why I was bleeding, so I told him that I must have started my period. Of course, he told all his friends that I let him have sex with me while I was on my period. Oh, the teenage drama! After that, I got really good at faking my period. All my friends had their periods, and I desperately wanted to fit in. I faked period cramps every month. I even carried a tampon in my purse. I did tell my doctor about the trouble I was having with the ripping and bleeding. He explained that my vagina was very small and advised me to have it surgically enlarged to fit the average penis. 

 

Immediately after my surgery they had me start taking hormone replacement therapy. They adjusted it every couple of months and experimented with different brands and dosages. Needless to say, this put me on an emotional roller coaster ride. I did not have control of any of my emotions. I cried, I got angry, and eventually had a nervous breakdown and was taken to the hospital in an ambulance. The breakdown and ambulance ride happened in front of all the neighbors and neighborhood kids. They didn’t really know what was going on. Someone even started a rumor that I had tried to commit suicide. For the next year people were constantly whispering around me.  I can only imagine what they were saying.  

 

Over the next fourteen years various clues of the truth popped up. Either I didn’t understand them, was too blind to see them, or I just didn’t want to know the truth. I had to have a buckle smear in my late teens. They called be back in to the doctor to retake the test a second time. They said they had mixed up my sample with a male patient. However, when they re-took the test and realized that they really had not messed up and that I do indeed have XY chromosomes, they kept it to themselves.  In my mid-twenties, I was joining the military. They ran a bunch of medical tests and sent for my childhood medical records. I had to get a special waiver to join the military because of my testicular feminization. I didn’t know what that meant. Yes, I could have researched it, but this was before the age of the internet and I think I just was too scared to try and find out. Finally, at age 28, I was taking a Human Sexuality class at the local community college because I needed the science credits. I was reading my textbook and saw the word again, Testicular Feminization. I went to the library to find out any information on it that I could. I remember thinking to myself “oh my GOD, this is describing me”. I may have mentioned it to a couple of people, but eventually let it die. The next semester I had to swab the inside of my cheek in biology lab.  Sure enough, the results said I had XY chromosomes. I showed them to my professor and she suggested that I get my medical records and consult with my physician. I ordered my medical records from the hospital where the surgery was performed. They said they were in the archives and they would try and find them. After about three weeks thy called and told me they had them. When they sent them to me there were only 3 pages. I knew there had to be more than three pages, so I ordered them again. They sent me three more pages.  It took me four tries before I could get them all. I took them to my local OBGYN. Her advice to me was to forget them and that they didn’t mean anything. I was infuriated!  What did she mean by, “They don’t mean anything?” The records said I had gonads and that I have XY chromosomes! Was I supposed to be a boy? What am I? Why was I never told? It said I was a pseudo-hermaphrodite! How did this happen? I never went back to that doctor.

 

At this point I was searching for answers anywhere I could find them; family, friends, church, school. The Internet. A couple of months later I read an article in a magazine about a girl with a very similar condition. I was so surprised because the doctor had told me that I would probably never meet anyone else like me. It listed a website in the UK, and information for the Intersex Society of North America.  I contacted the UK Intersex group and the Intersex Society of North America. They helped me connect with the Androgen Insensitivity Syndrome Support Group, USA. Their current website address is, aisdsd.org. They connected me with someone just like me, right down the road from where I was living. It was like finding a long-lost family. The sense of feeling all alone was gone and was replaced with an overwhelming feeling of unity. I embraced my new-found family and eventually became the president of the nationwide support group for two years. Following that, I continued as a director of the board for several years.

 

It turns out that my condition used to be called Pseudo-Hermaphrodite. It was changed to Testicular Feminization, then the nomenclature was changed to Complete Androgen Insensitivity Syndrome (CAIS). I think a negative stigma is attached to the older names and that is why they were changed. 

 

Are you asking yourself what Intersex is? Are you also asking what Complete Androgen Insensitive Syndrome (CAIS) is?  Intersex is the umbrella term that houses several different DSD’s (Differences of Sex Development). Complete Androgen Insensitivity Syndrome (CAIS) is just one of those DSDs. CAIS means that I am insensitive to any androgens. To simplify, my DNA is XY, therefor I have the recipe or pattern to become a boy. However, when the time came in the womb for the male hormones to be released so that I could start growing all my little boy parts, my body didn’t accept any of the male hormones, so I continued to develop into the default girl body.  However, since my DNA is XY, I didn’t have the recipe to make all the internal girl parts either. I was not able to grow/make a cervix or a uterus. My gonads never formed into testes and drop, and they never formed into ovaries. They just stayed as undeveloped gonads. The surgery that I had to remove my gonads is called an Orchiectomy.

 

It turns out that being intersex is almost as common as being a redhead, we are everywhere. I have been a member of the AISDSD support group for 19 years. During that time it has grown by leaps and bounds. What used to be viewed as a shameful secret is now something to be embraced. I see young teens at our annual conferences that are proud to be intersex and have such high self-esteem.  It really is a wonderful thing to see, far different than when I joined the support group almost two decades ago. Then, people were afraid to have their picture taken and the conference was held under an anonymous name.

 

The main point is that a lot of the trauma and drama in my life could have been avoided if doctors would have been open and honest back when my CAIS was discovered. Instead the doctors lied. My medical records say that my parents were only told that I had abnormal ovaries, and that they had to be removed to prevent cancer. They scared my parents into having unnecessary surgery performed on me. The truth is my gonads had the same chance of being cancerous than an average pair of breasts, and breast amputation is not an accepted medical treatment to prevent you from maybe someday having cancer. Perpetuating these lies results in unnecessary surgeries, secretiveness and a negative, shameful stigma attached to DSD’s. There is the feeling of being alone when doctors say that you will never meet anyone else like you. The feeling of being ashamed when you are told to lie about what kind of surgery you had, for the fear that people would make fun of you. I would like to give the medical community the benefit of the doubt and say they had the best of intentions and were doing what they thought was best. But they wanted everything to fit is a box, either a girl box or a boy box. The reality of it is that there are many boxes, some of which most of the doctors were completely unfamiliar. Not everything is black and white. Most of the time it is beautiful shades of grey. Even with all that I went through, I still feel very lucky. So many more Intersex individuals have had it so much tougher than I did.  I have met so many that did have their genitals mutilated and clitorises circumcised. Some were left with so much scar tissue that they now have little to no sensation in their genital area. Some had doctors that were so anxious to assign a gender that they assigned the wrong gender, hence the child was raised as the wrong gender for a portion of their life.

 

Fortunately, times have changed and more people are aware that it is a diverse world. Several doctors have joined our support group and attend our annual meetings, hopefully the first of many. They advocate for better treatment of Intersex patients and to stop unnecessary surgeries that do more harm than good. I say this to the doctors that are still living in the dark ages—and I'm paraphrasing Maya Angelou: “Now that we know better, we can do better!” It is imperative that we do better! No more unnecessary surgeries! No more mutilating ambiguous genitals! No more clitoral circumcisions! Be honest and open with parents and patients and offer them counseling!  Help people have a reason to be proud of who they are! Do not make them feel freakish and shameful! Do not treat them like a piece of meat on the table! Do not try and change someone just because you are not comfortable with who they are and how they look. Let you patients make all of their own decisions when they are old enough to consent for themselves and are well educated, informed, and know all of the truthful facts.

 

For more information on being Intersex go to www.aisdsd.org.

 

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