My Journey With AIS

I was born in 1955 with AIS. At the time it wasn't noticed as far as I know because I was born very premature and weighed only 4 1/2 lbs. I had many health problems that the Doctors had to deal with. Since it was 1955 they didn't have the modern techniques that they have today such as Neonatal ICU so they were going to let me just die. I also had to have a complete transfusion of all my blood because I had suffered a stroke either in utero or right after birth because of the Rh factor conflict between my mother's blood and mine. I stayed in the hospital for three months and slowly through prayer, faith, and the GRACE of God I recovered and was able to come home and am alive today at 46 yrs. of age.

I do remember being taken to numerous doctors as a young child from the age of 5. I was never given a reason why I was being examined. I don't remember questioning it, or if I did I don't remember being given an answer that is memorable.

Later around the age of 10 (in Aug. of 1966) I was taken by my parents to a Urologist in Houston, Texas, was examined and told that I would need to have "surgery". I was told that I had been born with an inguinal hernia and it would have to be corrected. I was also told I would have to take female hormones the rest of my life so I could develop breasts and have all the female curves, etc. I was told I wouldn't have pubic hair and underarm hair and that I would grow a beard and my voice would be low like a males and such if I didn't have the surgery and take the hormones. I questioned "WHY" but my parents said that is just the way it is. Naturally as a girl at that age I wasn't concerned about this because you have all faith and confidence in your parents and feel that they would never do anything to your detriment. I was put in the hospital at the age of 11 yrs. and surgery was performed on me. I was given a bilateral gonadectomy. When I was recovered I was told that I would not be able to have any children and that I was to NEVER speak about this to anyone. I wondered why but when I pushed the issue my parents would get very upset so I would back off. The only other thing I was told was that my female organs never fully formed because I was born so premature and that the pieces that were found could have caused cancer.

The doctor came down during the surgery to the waiting room and asked my parents if they wanted him to make me a boy or leave me as a female and they said leave her female because I had been raised thinking I was a female up till then and we lived in a very small country town where everyone knew me. They also felt that as a little 11 yr. old girl, it would be too traumatic for me to come back as a little boy because I was raised as a girl up until then. We would have had to move to another state and started all new lives because of the embarrassment and discomfort my parents and I would have had to face. I am glad that I had the surgery now and have the life I have but I can't say for sure how I would have felt at the age of 11 if I had known the whole story and understood it like I do now. I don't blame them for having the surgery performed but I DO blame them for not telling me the WHOLE TRUTH especially when I was around the age of 13 or 14 when I could have understood it all better I believe. Then I wouldn't have gone through all the soul searching I have done since finding out the WHOLE TRUTH. My Dr. in Houston said when I called him awhile back with more questions that I reminded him of a person who had just found out they were adopted and couldn't find out all information about their birth and birth parents fast enough. This is very true too I feel.

I was a happy teenager and believed in my parent's love for me and I totally believed in my Doctor who was like a father to me. I had no reason to ever question what I had been told. I was a very trusting child.

When I started dating at 15, I was told to not tell my boyfriend anything and to be a "GOOD GIRL". I knew what this meant and I had all intents on doing just that. I did know that I couldn't get pregnant but I had just started dating this guy so I wasn't about to do anything. Later as we knew each other more and dated more we realized that we were going to end up together and I told him that I was certain because of an operation I had when I was 11 years old that I couldn't have any children and that if he was going to want a family when we married that we would have to adopt. He said "fine" and just questioned me as to why I couldn't have children. I told him what little I knew of the situation. I had to use dilators to lengthen my short, blind ending vagina and my husband-to-be had to be examined by my Dr. to see if we would be able to have sexual intercourse.

Then in Feb. 1973 we were married and moved to Florida to his first duty station in the U.S. Air Force. I had never been away from home and the homesickness was more than I could handle. I developed panic attacks, and though I didn't know what they were at the time I know now. My parents and a state Senator from our home state helped us get a Compassionate Reassignment back to our home state. During the time we were writing letters and filing papers for this Compassionate Reassignment we came across some papers that pertained to me and my condition. There in black and white were the words under diagnosis, "Bilateral Gonadectomy". I immediately called my parents and questioned them on this and of course they denied it and tried to convince me I was mistaken and that the papers had been on someone else, but my new husband and myself had read them and there was NO MISTAKE. I called my urologist and he at first also denied any knowledge and tried to give me the answers he had given me all those years ago after my surgery, but finally he realised that I wasn't going to stop digging until I knew the truth, so he told me the whole truth. I was devastated because my physical appearance was female and I had always been told I was a girl and I had always thought of myself as a girl. I had pubic hair, underarm hair, and breasts and looked totally female! It later became clearer to me that it was because I had been put on HRT (hormone replacement therapy) after the surgery at the age of 11. (It was Diethylstilbestrol, but I forgot the dose and it was increased as I got older). I was very upset, but over time learned to accept it and dug around until I finally paid to get my records from my Doctor and just consumed everything in the folder like a starving person seeing food for the first time.

Luckily for me it didn't change my husband's feelings for me in the least. As far as he was and IS concerned I am his wife and 100% woman. We have just celebrated our 28th wedding anniversary and are a very happy, loving couple. We never adopted any children but we are happy just the same. I have babysat for a friend's child since her little girl was 3 months old, and this child will turn 16 in July 2001. So we have essentially had a child all these years and we love her like she is ours and she and her family consider us family too. My husband's parents think of this child as their grandchild also, and get her Christmas presents, Birthday presents, Easter presents, and celebrate every other holiday with her by sending a card, etc.

I know my situation may seem unique, but believe me it hasn't been a bed of roses. We have made it through a lot of difficulties and come out on the other side happy and healthy.

Finding the AIS People Club in Yahoo has helped me find a whole new family to get support, help and understanding regarding my AIS. I highly recommend the AIS People Club to anyone of any age that needs someone to talk to for support. The web site address is (Note that this website was live at the time this article was written).

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Last update: 22 January, 2014

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