Karen, age 3, still not happy. I know that “something’s up that they’re not telling me”
A special note about exogenous versus endogenous hormones, & some of the misconceptions about the effectiveness of testosterone for CAIS women. For about 40 years I was on Premarin only (estrogen pills made from pregnant mare’s urine); then I was on transdermal estradiol & transdermal testosterone for about a year & a half. About 2 years ago I switched to testosterone alone as my hormone replacement therapy (HRT). During all those years of taking artificially manufactured estrogen, it was like riding an angry dragon. It wasn’t a fun ride. The only tangible things it did for me was to destabilize my mood, increase depression, cause constant weight problems, & just generally make me feel “not right”. Since switching to testosterone only, there is no mood destabilization, a lessening of depression, a better mental alertness & general sense of wellbeing, & more stabilization of my weight. (As an aside, the only time in my life when I was not obese was my last 2 years of high school & my 4 years of college, during which I had rebelled against taking the prescribed HRT.) Never let a doctor tell you that hormone prescriptions are as good as the real thing – they are not.
Another part of the comprehensive answer is that I would have had a better psychological life. I would have felt natural & accepted, since my medical treatment would not have been invasive or fostered all the secrecy, shame, depression, PTSD & body image issues. I could have properly mourned & come to acceptance of my infertility at an early age, instead of struggling with my unexpressed feelings about it (unexpressed because parents & doctors wouldn’t allow it to be discussed). I would never have had to ride the angry dragon & experience the artificial mood swings caused by the prescribed hormone pills. Since we know our brains also have receptors for hormones (in addition to our sex organs), I would have had a natural balance of testosterone & estrogen. I imagine that would be more like a walk in the park than a turbulent dragon flight.
I imagine how good all of these positive effects would have felt throughout my entire life. Yes, it would have felt much less difficult than what my life has been. And yes, I would have liked it. The most convincing validation for my answers here is that I am now mimicking, as closely as possible, my natural-born state by using testosterone alone for my HRT. That has been a sea change for me. It is less difficult & I like it better. I am still left with the sadness & frustration though about having to replace what was taken from me. If they had just left my healthy testes alone …
So, my imagining what I’d be like if they hadn’t surgerized me when I was a baby has been a healthy exercise for me. Unlike fantasizing about being a traditional mother/wife, or bemoaning that I am “not normal” like other women, it has caused me to look more closely at the truth, & to seek better care. I have more compassion for myself, understanding that my CAIS is just a natural occurrence & that it doesn’t mean that I was born flawed or broken.
Yes, they should have left me alone – but I’m doing what I can now to live as natural a life as possible, & to help others do the same. It has also been healthy & empowering for me to advocate for intersex youth. No one else should have to go through what I’ve gone through. Everyone deserves to live a natural & authentic life, & to make their own informed choices. And that’s one of the reasons why I am a proud member of interACT’s Board of Directors.
We can all help, in our own ways, to make things better. I applaud recent events that have highlighted how far we still need to go to recognize intersex lives as full, productive & worth living. Kudos & profound admiration to Hanne Gaby Odeile for being so outspoken & generous with her own story (https://live-interact-advocates.pantheonsite.io/wp-content/uploads/2017/01/PRESSRELEASE-HannesAnnouncement.pdf), & her advocacy efforts (https://www.youtube.com/watch?v=H_5BFmwNk-s). I am also grateful to the World Health Organization & Human Rights Watch for becoming involved to help protect intersex kids. Onward & upward to a better future for all intersex kids & adults!