Friday, January 30, 2009

My AIS Story - Part 8

When I had come to terms with my discovered diagnosis and learned all I could about Androgen Insensitivity Syndrome, I had the talk with my husband. When I began with the discovery of my records, he had a worried, nervous look on his face. It probably didn't help that I was crying.

When I finished my "speech" about how I may have been "meant" to be a boy originally, but developed as a girl, a girl with internal, useless testes, and a Y-chromosome, he asked if this would affect my health in any way in the future. When I replied no, he breathed a sigh of relief.

He had thought I was going to tell him I would have to undergo yet another surgery, or would get cancer or something just as bad. This XY discovery, even the undescended testes. These things didn't matter. To him, I was a woman, and had always been a woman. I had always been honest with him. I was the same person he het met several years before. What a relief.


After "coming out" to my husband, I talked to my mother on the phone about my discovery. I think she sensed what it was about immediately, when I told her I had found something disturbing in my old medical records.

I still don't think she knew the full extent of my condition. I think it was one part the doctors explaining things in terms she didn't quite understand. And one part denial, and worry more for my overall health and well-being to get caught up in asking the doctors lots of questions or for clarification of words like "gonads".

I will never know for certain what was said and wasn't said in that doctor's office or in the hospital that day, and though it still does bother me - to learn I'd been deceived, to learn that something was taken from me (whether I wanted it or not) without my knowing the real truth about what it was - I've come to peace with it to a large extent.

Ethics in medicine, ethics in the world, are always changing - and hopefully for the best interest of the patient. Back in the early 90s and before, the world was different. To be born intersexed in some way, to fall in between, was horrible and shameful. In a way many can't imagine now, I think that the doctors at that time thought they were doing what was best. It may have not always been the "right" thing but I think there are few times in life when things are so clearly black and white, right or wrong. This doesn't keep me from feeling hurt or angry, but it does help me to understand.

I think often about people with varying degrees of AIS. I feel extremely lucky in a way to have been born with the complete version, CAIS, because it meant I was born completely and unambiguously female on the outside. I think it would have been harder to fall much more in between. There would have been many more questions, and quite possibly then in the 1970s, a decision made for me about my gender which I would later not have been able to come to terms with.

I guess I feel lucky to have AIS overall, because it made me who I am today. It made me a woman. Social equity issues aside, I have never desired to be a man. Being a woman has afforded me a greater range of freedom to express myself than I think a lot of men feel they have. I can be as tough as nails in one situation, and cry like crazy over another, and it's still ok. Though the same should apply for everyone of course, man or woman.

Besides - my Mom had three healthy boys after me. I think that's more than enough men in the family. :)


  1. read all episodes. :)
    good language. you must be publish this as book to boost up all AIS people in the world.


  2. Thank you for sharing such a personal story. I read all the episodes too. Inspirational!

  3. Congratulations! You left me a messaage on slideshare thanking me for the AIS information. Now I thank you for helping to educate about the many sexual variations of humanity.

  4. Thanks so much for sharing your story! SO similar to mine. It was so nice finding someone who can relate.

  5. Thanks for sharing this! I am also an AIS woman and part of the US Support group. I urge my fellow AISers to joing the group circle. You will never experience such a bond with others. It has helped me a lot with understanding & accepting all of this.

  6. Thanks for the wonderful comments, everyone!


  7. thanks for sharing. my cais girlfriend & i went thru a hard time too but grew so much stronger

  8. I need to gather up the courage to tell my boyfriend..

  9. Hi Anonymous -- I think that some folks choose to never tell their boyfriends. But it's a personal choice. If this is something that will weigh on you, then I think you're right - you do need to gather the courage to do so. If you are a member of the email support group for AIS women, I'd encourage you to ask other members how they broke the news to significant others. Reactions are often more positive than you would think, but it will probably help you to hear how they did it, and what the results were.

  10. I am a PAIS male. Coming from the opposite end of the spectrum, just over the last couple years has been a slow road to realization. What started the ball rolling for me recently has been an episode of House MD called 'Skin Deep'.
    I heard a term used that I did not hear since my early childhood - undescended testicles.
    I had to do some of my own research, seeking out sites like this on the net. With the character 'Alex' I was more fascinated than repulsed. Again, being from the male side, finding someone like her attractive. I had to ask myself, does that make me gay?
    Putting this aside, I at the age of 9 had an operation to have my testicles pulled out of my abdomen and placed into my scrotum. I was not aware of any outward signs of my differences, but looking back at the odd behaviors of the adults around me at the time, it leaves me some clues(too much to fit here).
    I do remember talk about whether I needed to take male hormones after the operation, but fortunately it was successfully and no, I did not. I am totally male in appearance. But I believe I can read into things at times like a woman can. I am not ashamed of this. It is part of who I am. It is genius to be able to SEE both sides of the coin, and not have them conflict. Also, since I am attracted to CAIS women, I have noticed actresses by the clues they leave about themselves on youtube. I won't go into any details here. Thank you for letting me share.

  11. Thanks for your thoughts, Aldun. You're the only AIS male I've encountered so it's good to hear your perspective. I'll check out your blog for sure.

    Regarding whether attraction to a CAIS female makes you gay or not, I would say it makes you straight. We're real women, just male on the genetic level. I think it's natural to ask the question though. Just my humble opinion.

  12. I found your site because you commented on a news article regarding intersex.
    I have no experience with intersex and as far as I am aware, I do not know anyone who is. But, I admire your courage to write about such a personal and yet, important, topic. Please continue and I will definitely keep reading and learning. :)

  13. Thanks so much Desertbon, for coming by and for your kind words! I haven't written very much lately, but will try to pick it up again. Let me know if there is anything in particular that interests you.

  14. I just read your account of being (like me) CAIS. I found out when i was 42, I am now 48 that they lied to me also. Your story is so similar to mine, though i didnt get the support from my mother. My husband is very supportive. I found it comforting to see the words written, when they describe the same journey as mine. Well done. Loz from Australia

  15. Thanks Loz!! Thanks for stopping by and taking the time to read!!