I was born in 1981 in Melbourne, Australia. My parents had a lot of trouble having children - suffering six miscarriages before my birth. During their difficulties, they adopted my brother who is seven years older than me. My parents had actually given up trying to have a child of their own making when my mother discovered she was pregnant again. My mother tried not to get overly excited during her early pregnancy with me, but as she grew closer to full term, the excitement and anticipation of having a baby grew. I became known as "the little miracle".
I was born with AIS - to be precise - 17-Ketosteroid Reductase Deficiency (try remembering that one!). My chromosomes were male (XY), and my genitalia ambiguous. I had internal underdeveloped gonads and what was effectively an enlarged clitorus and a shortened vagina. I had no internal female reproductive organs at all.
As with many cases of AIS, my condition was undiagnosed at birth. I was considered female with a slightly odd looking clitorus - nothing more. As I grew, so did my clitorus and finally at aged seven I was referred to a specialist gynecologist who diagnosed my condition.
My mother and fathers experience of this time was a little tumultuous of course, but they were treated very well by the specialists. A decision was taken to remove my gonads, and undertake reconstructive surgery to reshape my clitorus. I was eight years old when I had the surgery. My parents made the decision to inform all but the closest family members that I was "having my appendix out".
I should say that compared to the horror stories you can read on the Internet relating to reconstructive surgeries - mine was what I would consider to be very successful. I have full feeling in my clitorus and vagina - I enjoy sex and orgasm quite normally.
When I was 12 years old, I began hormone replacement therapy. I have experimented with various forms during the past 20 years but currently I take Premarin .625 mg daily. I developed as a normal teenaged girl would (except for the periods of course).
When I was 13 I began to see a gynecologist who specializes in AIS conditions who I have found to be very supportive over my life. Her support has guided me, informed me and I have never been without answers as so many AIS sufferers seem to be.
During my teenage years, was encouraged to lengthen my vagina naturally (staring with my tip of my finger, and moving from there)... The vagina is a naturally stretchy organ and over the period of about 2 - 3 years, I lengthened it so that at 18, I was able to have sex for the first time quite normally.
My story has not always been easy - there have been a number of hurdles to overcome along the way... I've included these in the hope that they may be of help to fellow AIS people or parents.
Firstly, I have suffered an abnormal amount of urinary tract infections - particularly when I first became sexually active. These of course went away with regular treatment (antibiotics) and over the years they have gotten a lot less common (I probably suffer them now twice a year or so).
Dealing with the pain associated with not being able to have children has been hard - it wasn't an issue in my 20s but I did go through a hard time when I turned 30 as my friends starting having babies. I sought therapy for this and I'm in a fairly good place now, but I know this will be something that I will probably continue to deal with for sometime.
I have always had difficulty in sharing my story - I had a few difficult experiences trying to share my story when I was younger and those experiences have caused me to prefer silence over sharing.
I've had some interesting experiences on HRT... I took one medication (livial) which made me feel as sexually charged as a sixteen year old boy! My husband loved it but it was all too consuming for my liking.
I want to end on some of the good points of having AIS (I won't say "blessed", but sometimes it does feel like a gift). I've always felt as though I have had the very best of male and female inside of me. I'm compassionate and level headed... I'm both motherly and fatherly. I embrace masculinity and femininity. Having always known I wouldn't be a mother has actually freed me to achieve a great deal in life. My horizons were broadened at a young age in part because I didn't have the traditional pathway ahead of me. I think people with AIS are born in to this world because of what we can offer in holding both masculine and feminine traits - its our gift and we need to use it.
I hope this story is helpful for those who read it.
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Last update: 22 January, 2014
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