Friday, January 30, 2009

My AIS Story - Part 6

I was going through a big stack of medical records one day - just a few months ago actually. I had ordered copies from all my doctors and hospitals for both my own files and for transferring to my new doctors after a big move. Over the years, after having several surgeries, and lots of small illnesses (hay fever, shellfish allergy, etc.) I'd been in the hospital many times and have acquainted myself with lots of medical terminology. Going over the records was in part just interesting to me.

Coming upon the records related to my hysterectomy and first visit to the gynecologist's though, I was completely unprepared for what I found.

46 x,y karyotype...

testicular feminization...

undescended testes...


My heart dropped into my stomach and I felt sick. What the hell had I found?

I read on, struggling to decipher the medical terms, and using Google for what I didn't understand. Testicular feminization. And old term for what's now known as ANDROGEN INSENSITIVITY SYNDROME. Sounded a tiny bit more palatable... but what did this mean? That I was actually, AM actually, a GUY???

Here I was, now 31. For 14 years thinking I'd had a hysterectomy. A deformed uterus, twisted ovaries prone to cancer. I had dealt with it emotionally and put it behind me. Now this. Now, a pair of testes instead of ovaries. An absent uterus. MALE DNA...

I found the letter written from the surgeon to the gynecologist describing a successful procedure, and biopsies taken from the "gonads". What I had had was really not a hysterectomy at all. "As we discussed" the surgeon wrote, she had not shared the full story with the patient.

I was shocked. And horrified.

By the "monster" I felt like. By the anger I felt that doctors had hid the truth from me for all this time. By all these unanswered questions that popped up over the years -- Why weren't my eggs frozen? Why I have never met any other women who had gone through the same thing at my age? Why didn't I get some kind of counseling for women like me? Why was it treated as some sort of shameful secret?

It all became slowly and painfully clear.

I felt revolted by my own body.

I searched my face in the mirror for signs of "maleness". Went through a mental checklist of body parts, and thought through what was feminine about me, and what was masculine. Random memories surfaced: Last fall catching a glimpse of myself in jeans and hooded sweatshirt and sneakers as I passed a store window and remarking to my husband that I looked like a teenage boy. My tall stature. My big feet and long fingers. Feeling different in school, and not having a boyfriend for so many years. They must have known something, I thought.

After freaking out and crying about it, and then spending hours online learning everything I could about my diagnosis, COMPLETE ANDROGEN INSENSITIVITY SYNDROME (CAIS), I began to calm down a bit. I thought some more. I may have felt "different" but don't most kids sometimes? I was tall, but models are tall right? And I never felt like a man. No one ever mistook me for one.

But... how could I ever tell my husband?? Would he see me differently? Would he be disgusted? If he left me and I ended up alone, would I ever be able to find someone who wouldn't be totally turned off by this discovery?

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