Androgen Insensitivity Syndrome Support Group

Androgen insensitivity syndrome (AIS, or "Androgen resistance syndrome") is a set of disorders of sexual differentiation that results from mutations of the gene encoding the androgen receptor. Most of the forms of AIS involve variable degrees of undervirilization and/or infertility in XY persons of either sex.

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deleted_user 08/01/2010

I was born during a time, where there was very little understanding (Both medical, and public.) about AIS. I've had more surgeries, than I can recall, most of which were "experimental". Including, one failed CVP, and finally, a Mc Indoe procedure. It took me almost 30 years to understand this condition, and finally get power over it. I didn't even know the name of it, until last year. Since that time, I've been studying, and educating myself on AIS.

I in no way, consider myself an expert on the matter, but I am making myself available. Whether you need advice, support, or just someone to talk to.

ZX7R

deleted_user 02/01/2011

Please tell my how you've done it. I haven't been diagnosed with AIS, but I have a lot of reasons to believe it is my case (and then, other reasons to believe it's not). However, I've always have the need to find someone who understands me in this problem.

deleted_user 02/01/2011

I was diagnosed, shortly after birth. My parents didn't really educate me about it, and I was pretty confused through late adolescence, and early 20's. But, I didn't start opening my eyes until I saw an endocrinologist. You can have your General Practice doctor, refer you to an endocrinologist in your area.

If you're wondering how I "figuratively" did it.... Self-acceptance is a HUGE part of it. I learned to accept and love myself. I spent a lot of time doing things that made me happy, and focusing on the things that I love about myself. It sounds a bit self-centered, but who would need that more than someone in that type of situation?

I'm here if you need anything. :)

deleted_user 07/16/2011

I wish that I could accept it the way that you have...quite honestly. I feel like a freak. Like there is something terribly wrong with me and the doctor that I was seeing about it didn't help that. I just wish it wasn't a part of me. I wish that I was fine.

deleted_user 09/21/2012

I just found out a few months ago that I have AIS, I had the surgery when I was 15 and then again at 16 but my parents and I were told I was having a hysterectomy. Finding this out now at 31 is really messing with my head, and if one more person tells me how lucky I am because I don't have a period I might have to slap them. I'm trying to stay as positive as I can about this. At first I was shocked then horrified, then I was adamant that it doesn't change anything. Now all of a sudden I can't get it out of my head. I'm seeing a counselor now and that is very helpful but, no one really understands. I'm so grateful for your post, just knowing there are other people who are coping with this makes it feel a little less heavy. Did you go through the emotional roller coaster?

deleted_user 09/21/2012

Yeah, it was quite the ordeal. Most of what I went through was anger and shame. But I realized that I had to let that all go. There wasn't anyone for me to be angry with, and there wasn't any reason for me to be ashamed. So, why give those feelings space in my head?

deleted_user 01/05/2013

I can relate to some of these statements that had been posted here so far. Treating doctors from my past, and my mother, when I was little, they didn't know what to think, after the physical examination. Now that I'm all grown up, surgeons are relucent to do anything. At times, I feel like a freak asking God.. why?

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