Intersexed, AIS Woman
I am intersexed. Writing that word is a big relief, but I also feel a great deal of anger and shame. I have Androgen Insensitivity Syndrome (AIS). As a fetus, I developed testicles, but because my body could not respond to male hormones, my genitals developed on the outside to have a female appearance. But I have no uterus, and my vagina is not big enough for intercourse.
You would not believe how many years have gone into being able to write that simple paragraph. I have suffered for decades, knowing I was not like “normal” men and women. (For one thing, I never menstruated, and I never had any underarm or pubic hair.) My family had a vague story about me needing an operation when I was an infant, but they would never tell me what kind of surgery it was. I heard the word “cancer” but no one would ever tell me if I had cancer, or I was going to get it, or what. I went to see doctors, and I think some of them knew what was going on, but all of them refused to tell me the truth. I once saw my file, where a doctor had written down that I was male. This was very hurtful to me, but again, he would not tell me why he said that about me. He acted like it was a mistake, but he never corrected it.
When I went to the hospital where I was born and demanded to see my birth records, they lied to me as well. They pretended they could not find anything. But I had my birth certificate! Even my mother's doctor refused to “break her confidentiality.” He told me I would need my mother to sign a release. I got her to sign it, but after I sent it to him, he never answered my letters or phone calls.
Meanwhile, I am wondering if I can ever have children, something I want with all my heart. Sex is extremely uncomfortable. The fact that I can't have normal intercourse ruins two good potential relationships. After the second heartbreak, I refuse to go out with men who find me attractive. I feel uncomfortable in both male and female clothes, as if neither one were designed for my body. Not having a period means I cannot talk to my girlfriends when they complain about their cramps, etc. My small breasts and lack of body hair make me look childish when I take my clothes off, so I have trouble taking myself seriously as an adult. I am unable to focus on school or jobs because the basic question of my identity is not answered.
Thank God for the Internet. I finally found a description of somebody else like me. So I went to get genetic testing. I was lucky to find a very kind doctor who promised to tell me the truth and talk to me about whatever we found out. She was my rock, and even helped me to find a counselor.
Now that I know, what should I do with the rest of my life? Can I ever have a normal relationship or raise a family? Am I a real woman? How can I be a real woman when I once had testicles? (They were removed soon after I was born.) I don't want to be a man, but maybe I am some third thing, a freak of nature. Will anybody who knows the truth about me love me? This has created so many hard feelings between myself and my family that they no longer speak to me. Tell me what my options are, please. I know who I am now, but I still feel alone in the world.
You can be intersexed and decide to live in any of several identities. It is a question of what fits the best for you. Although some intersexed people decide they do not want to “pass” as men or women, most feel an affinity for one sex or the other, and adapt themselves to that role. This can take ongoing support and counseling, so don't fire your therapist! I'm so grateful that you found a competent doctor who faced the medical facts with you and got at the truth. I don't understand why people are so horrified by genetic variations that affect the sex chromosomes or hormones. These conditions have probably existed for millions of years. Denial is not helpful! Especially not when it is coupled with disapproval and rejection. It's not easy to be a “normal man” or a “normal woman” even if you've got plain old xy or xx chromosomes. If it was, our society wouldn't need to spend so much time relentlessly conditioning us and punishing any “mistakes.” Well, you are not a mistake. You are a human being who deserves dignity and happiness.
AIS is estimated to affect 1 in every 20,000 births. Most of the people who have full or partial androgen insensitivity look like and identify as women. It is hard to be a woman who cannot have children. Being intimate is hard when you experience too much pain to have intercourse. But these obstacles are also experienced by many women who are not intersexed. There are many women who cannot give birth, because of infertility, illness, or early menpause. You are not a freak or a monster. Nobody knows exactly how many intersexed infants are born each year, but we do know that the number is high enough to make these conditions a normal variation on human biology and physiology. It's good that intersexed activists are doing work to educate doctors and families to avoid unnecessary surgery on infants, and to give these children a chance to grow up and develop their own identities, then determine what medical interventions might help them.
For example, some AIS women choose to have vaginoplasty, a surgery to increase the depth of the vagina. These surgeries can have serious complications. Some AIS women prefer to use a series of pressure or stretching exercises to attempt to add length to the vagina. Others decide that intercourse or deep penetration may not be part of their sex lives. How will you have pleasure in your life? Many options exist. There are men with small penises, women who prefer to use their hands or lips for sex, toys that come in a variety of sizes, and educational material for partners and families. Human beings are adaptable people. I believe you can find both love and desire, as long as you feel positive about yourself, comfortable in speaking about your medical history, and strong enough to ask for what you want or allow yourself to explore. This will take time to develop, so be patient with yourself. If you want to raise a family, the first step is to take good care of yourself. Being a stable person who makes a decent living is necessary (obviously) before you can support children. There many different ways to build a family. Children can come from foster programs, adoption, surrogate mothers, assisted fertilization, and the list goes on.
If you don't already know about them, try looking at the Intersexed Society of North America's web site at www.isna.org. They have a page on AIS and a link to a support group for AIS women. You might also enjoy a book written by Thea Hillman called Intersex (For Lack of a Better Word). This is an accessible, well-written memoir by a person whose life story resembles yours in many respects.
Please feel free to write to me again if you find new questions along the way. I hope everyone who reads your letter will join me in sending you energy to bolster your courage and healing. We all know intersexed people—it's just that some of them don't make the fact public, and many others don't know. A good friend of mine was just diagnosed with Klinefelter syndrome. He had no idea he had a genetic variation of the sex chromosomes. Instead of being xy, he is xxy. Our culture is overly invested in a simplistic definition of sex and gender, so we wind up being ignorant about people with genetic variations who need more honesty, support, options, and acceptance.