April's Story

[Received Aug 2000]

Hi, I'm April, I'm 47 and living in Australia, although I was born in Scotland. I've just discovered tonight, that I have AIS. I mean I've known that I was different since I was 18, (well, probably since I was 8, really) but until tonight when I found your website through [a link from] http://www.abc.net.au/quantum/s164599.htm [a site that was] following up a story about an intersex child in Britain. I didn't know it had a name or that it was a recognised syndrome.

Very interesting [AISSG] website. Basically it has confirmed things that I always suspected about myself. I never menstruated. I'm tall, 175 cm or 5'9", slim with broad shoulders and slim hips and had very little breast development. From the back I was often mistaken for a male. I had a rudimentary uterus and I have some pubic hair but no underarm hair.

I thought I was the only one like this in Australia. Maybe I am? That's what I was told in the 1970's, anyway. So I'm not alone, and I'm not so unique. Amazing. From your descriptions on the website, I at first thought I was CAIS, but now think I may be Grade 7 PAIS. Whatever, it doesn't matter, really, as I am who and what I am and no label will change that.

As a young girl, I always thought that I should have been born a boy. Hated being a girl. Vowed never to marry when I was 8 as I thought my mother's life was boring. I lived that vow and never have married, although I've had long term relationships. Didn't like girls when I was young, or girly stuff. I was a tomboy, loved adventure and climbing, etc. I thought that the men had all the fun in life, got to do the adventurous stuff. I was envious. At my primary school, the boys did art while the girls did sewing and knitting. Most unfair!! I became aware of sexual politics at a very young age!

When I was 18, because I hadn't menstruated, I had a bucal smear and was told I was XXY, which meant nothing to me, except that I couldn't have children. This turned out to be a blessing in disguise as 2 weeks later I was diagnosed with renal failure and told not to get pregnant otherwise I'd need a medical abortion. Every dark cloud.......

I had a complete hysterectomy in 1977 at the age of 24, but was not told before the surgery that I was having one, as I went in for another form of surgery, and it took years for me to find out what had been done and why. I was only told that my "ovaries" were pre cancerous. I discovered MANY years later that what had been removed was undeveloped male gonadal tissue.

I had many vivid dreams for years of mutilating that specialist in the same way that I thought he had mutilated me. I was offered no counselling, even though I asked for it, and was given no H.R.T. at the time, in fact I didn't get any H.R.T. until it was discovered I was osteoporosed [low bone density] when I was 37 and then I went through a very belated puberty!!!! I put on weight and breasts went from a less than A to a C in about 6 months. Quite a shock, to say the least. Took me quite a few years to get used to this new body. Now 10 years later, I'm beginning to feel comfortable with it.

Some 7 years after the hysterectomy, I had correcting surgery to repair the damage caused during the hysterectomy, so I had a vaginal reconstruction, but that wasn't done until my 30's and I was living with very painful intercourse for all those years. For years I had been complaining about this to my specialist, his response was to very patiently draw me little diagrams of how he had done the hysterectomy and show me that, if anything, it was now longer. It was all in my head, of course. He talked to me as though I was a 3 year old. Other advice I received in that time was to have a drink of alcohol before I went to bed to "loosen up" before sex. I was ready to become celibate and the relationship I was in was falling apart.

5 years later, I was seeing another specialist, told him about the sex problems and he examined me and said, "Oh, it's definitely about 2 inches shorter than it should be" I was furious. Why did the other guy lie to me for so many years? A couple of years later I was visiting a close friend and she suggested I have surgery to lengthen it. I had never thought of that, so I went to the new doc and said, "Is it possible" "Sure" he said. "How come you never told me?" I said. "You never asked" was his smart arse reply! So I booked in for the surgery. To top it off, the day before the reconstruction, I was told that it was experimental, as he had never done anything like that before.

It worked, but I went through a lot of trauma. I can remember saying to the surgeon as he was about to remove the stitches and the internal form (having been EXTREMELY uncomfortable for 10 days and getting no answers to any of my questions and no one would bring me a mirror, either!) "The next time some other woman asks you to do this for them, tell them they should become celibate, a lesbian or only f*** dwarves!" He roared with laughter and replied, "The problem is, you don't know if they're dwarves until they drop their drawers."

Shortly afterward I had a nervous breakdown. I was just so full of anger at the medical profession for being SO UNprofessional!!!!!! For being treated so badly, for not being informed, for having to go through all this because of someone's incompetence, etc., etc., etc., as well as having to deal with a life threatening illness, renal failure, which included illness, dialysis and a kidney transplant (which I still have. 19+ years now!!!)

That was late 1985. That relationship ended. I made some major changes in my life, then and took control. Life has been pretty smooth sailing since then, comparatively speaking. I've done lots of personal growth, starting with the psychiatrist that I saw in 1985. One of the best things I ever did. Far from disliking women, which I did for a very long time, I have come to love and appreciate them as my friends and companions. I find my greatest solace in my women friends, although I'm in a long term relationship with a lovely man. He's definitely my best friend and I feel very blessed to have him beside me in my journey through life. He's been a stabilising influence on me for the last 10 years. Lets hope there's at least another 10 years to come.

Peace and blessings to all. So glad I found the site and could share my story.