Tom, a 48-year-old refrigerator mechanic in Michigan, recalls the moment his life changed forever. “I was entering the third grade, and my doctors explained that unlike most other boys my age, my testicles hadn’t yet descended like they were supposed to,” he explains. “This wasn’t uncommon, they said, but they needed to operate in order to fix the problem.”
However, when Tom’s doctors “went lookin’ for ‘em,” they came up empty. “I’m sure these days they got ways to check whether your testicles are in your abdomen without having to operate,” he says. “But back then I guess they didn’t, and when the doctors opened me up, that’s when they realized, ‘Holy shit, he doesn’t have any!’”
Tom was born with all the typical physical and genetic markers of being male except for a pair of testicles. “I later learned later that my doctors were shocked that there were no testicles inside of me because they’d never seen this before,” Tom explains. “I was born with an extremely rare condition called ‘anorchia,’ which is basically defined as having developed full male genitalia but an ‘absence of gonads.’”
Because those with anorchia are often assigned male at birth, some go on to experience gender dysmorphia. They may have fully developed male sexual organs, but lack the ability to produce testosterone and other “masculinizing hormones” that aid in childhood and adolescent development of things like body hair and muscle build.
For his part, though, Tom says he’s never doubted his being a man. “I’m absolutely, 100 percent male except for not having testicles, and I never really second-guessed that,” he tells me. But for all the confidence he has now, growing up without testicles came with anxiety, confusion and “every form of testosterone treatment under the sun.”
No two people born with anorchia will have the same experience growing up. But for Tom, simply knowing there were others out there with the same condition would have gone a long way, which is why he wanted to share his story. Or as he puts it, “If my story being out there can help one person who’s scared, nervous or experiencing the same anxiety I had growing up, this will all be worth it.”
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Since the moment my doctors discovered I had no testicles, I followed their advice. I never deviated or pursued anything else because I didn’t know any better. I might as well have thought that this was typical of all boys my age.
A few years after my surgery in third grade, as boys my age began to enter puberty, my doctors started giving me testosterone treatment. I didn’t really know why I was getting it — all I knew was that I wasn’t making what I needed to make, and they were giving me something to fix that. When it comes to testosterone treatments, there are patches, creams and injections, and I’ve tried them all.
Multiple times a month, all the way through high school, I’d go to the doctor’s office where they’d ask me, “Do you feel sexually aroused?” Not only is that embarrassing when your parents are right there, but at the time, I was like, “Well, I ain’t gonna know any different” because I didn’t know what that meant. Eventually, though, it caught on, because I started to notice girls more.
The worst part of the treatments were what I called the “peaks and valleys.” When I’d get the injections in the beginning of the month, by the end of that month I’d be so tired, my energy was way low and I would have no sex drive. If my testosterone stayed too low, I’d run the risk of side effects like my breasts enlarging or my facial hair not growing. Thankfully, the doctors gave me the freedom to say, “Yeah, I need to change this dose because I’m not feeling where I think I should be.” Eventually, we found that the best regimen for me is a shot in the butt every two weeks. It’s so much a part of my life now that it doesn’t even faze me.
In fact, I now see it as a perk of my anorchia: I’ve got the same levels of testosterone now that I had in my 20s. These days, sometimes it’s just like I’m back in high school — I’m just a walking hornball.
Still, I kept everything a secret from pretty much everyone in my life, and outside some teasing for the testosterone-induced acne, I made it through pretty unscathed. Going into my sophomore year of high school, the doctors decided it was time to put in prosthetics testicles. Since most people’s testicles are fully developed by high school, I could get them put in without having to go back and get another operation to put in a larger size down the road. Plus, they were concerned that, with entering high school, I was about to be around showers more often, so other people might notice my empty scrotum. In hindsight, I don’t know how many people would, at a glance, be able to tell whether a scrotum has testicles or not.
I was aware of testicles — I was a normal teenager and had seen porn — but I didn’t have a reference point for what they were. As much as I knew the implants “weren’t real,” nobody explained that they were for cosmetic purposes only. I didn’t know what they were going to feel like or if they were going to impact my life. I’d already lived up to that point without them, so I was scared. But when I woke up from the surgery, it didn’t take long until I was just like, Ohhh okay, so this is what the doctors were talking about.
There was a little more weight down there than before, which took some getting used to, but to a certain extent, it felt similar to what people born without other body parts might feel: Even though I’d grown used to not having testicles down there, I realized having them made me more whole.
But even with the testosterone treatments and testicle implants — everything on paper that made it sound like I was a “normal” boy — my life continued to be confusing and anxiety-inducing. To this day, I’ve never met anyone else born with anorchia, so I was completely on my own. I knew the prosthetics didn’t do anything, but I didn’t, you know, start chokin’ my chicken until I was 18. And when I did, I didn’t think anything would come out the first time. But it did! And so I learned that there is ejaculate; it just doesn’t contain sperm.
At the time, it would’ve been nice to have an adult or someone to say, “Hey man, I went through this, you’ll be absolutely fine.” I don’t know if I would’ve listened, but it would’ve been somewhat comforting knowing someone else went through it. In fact, the point in my life I felt the worst wasn’t puberty or high school — it was in my mid-20s. I started seeing people my age having children, and it hit me, What if I meet someone and we fall in love? I’d always known I wouldn’t be able to have kids, but until that moment, I never realized the weight of that. When I went to college and became sexually active, I even saw it as a perk. I was still careful, of course, but never having to worry about getting somebody pregnant definitely seemed like a plus.
Suddenly, though, I was ready to settle down, and it scared me. I felt like I couldn’t get too close to someone because I’d have to drop that truth on them eventually, and I didn’t want to deprive anyone of having kids. I didn’t want to be the reason someone wouldn’t be able to do something they’d always wanted. So I resigned myself to the fact that I wouldn’t be a father. Which is fine, a lot of people are in the same, or worse, situations. And at least for me, my infertility didn’t come as a shock, like it would for others.
For years I thought I’d come to terms with everything, but then I met my wife. It wasn’t planned, but it ended up working great. She had three girls, and even to them I was always “Tom” — I was always the stepdad. But when their kids, my grandkids, started calling me “grandpa,” that felt different. That’s when, after a life of believing my anorchism prevented me from becoming a dad, it finally hit me that I was wrong about that, too.