Elijah Stephens knew something was different about him.
“Going back to the age of 6 was the first time I can remember feeling like something was off,” he recalled.
This feeling followed him through adulthood. “I was not who I was supposed to be, and it just ate at me year after year, day after day, minute after minute, hour after hour,” the 28-year-old operations manager told Healthline in an interview.
Who Stephens was supposed to be is a man. However, he was assigned female at birth (also known as AFAB). This incongruence is a condition known as gender dysphoria.
The standards of care for the World Professional Association for Transgender Health (WPATH) define gender dysphoria as “discomfort or distress that is caused by a discrepancy between a person’s gender identity and that person’s sex assigned at birth (and the associated gender role and/or the primary or secondary sex characteristics).”
In 2016, Stephens underwent a mastectomy. In August 2017, he had a hysterectomy and a vaginectomy.
And on February 5, he became the first-ever person to undergo a phalloplasty — the “bottom” surgery to affirm his genitalia from female to male — in New Jersey.
He’s part of a growing number of people undergoing gender affirmation surgery, which has increased nearly 20 percent from 2015 to 2016, according to the American Society of Plastic Surgeons.
A public health emergency
The surgeries were performed by Dr. Jonathan Keith, an assistant professor in the Division of Plastic Surgery at Rutgers New Jersey Medical School.
Keith is also the co-founder of the Rutgers Center For Transgender Health, which brings together healthcare providers in gynecology, urology, otolaryngology, psychiatry, and plastic surgery (chest masculinization, breast augmentation, phalloplasty and metoidioplasty, and vaginoplasty) to provide care for both transmasculine and transfeminine patients.
In 2017, the American Society of Plastic Surgeons reported 3,200 gender affirmation surgeries (also called gender confirmation surgeries) in the United States.
“Honestly, I almost think it’s a public health emergency right now [in] transgender health,” Keith said. “A lot of these patients are ignored or marginalized or people just don’t know how to take care of them.”
Indeed, to Stephens, his surgeries were more than just historically significant in his home state.
“It’s literally been life-changing,” Stephens said of his affirmation. “I feel like the real me.”
The Long Road
Growing up, Stephens had not heard about gender dysphoria, only that it was possible to have a “sex change.”
His adolescence was difficult. “One minute I’d been biting your head off, the next minute I been sitting in the corner crying for two hours,” he said. He also had suicidal thoughts.
At 17, he was misdiagnosed with bipolar disorder and put on medication. It was difficult to explain to mental healthcare providers what he felt about his body.
“I didn’t know how to tell them because I didn’t know what [the problem] was,” Stephens told Healthline. “I couldn’t admit to something that I had no idea about — I just knew I was different and I felt like the only person in the world who felt like me.”
At 18, he began to research what he was experiencing in terms of his gender, and learned that what he had is called gender dysphoria. At 24, Stephens stopped taking the bipolar medication and came out to his family as transgender. “And I’ve never had an episode. Ever.” That same year, he began taking testosterone.
But naming this experience was only the first step.
Not everyone with gender dysphoria chooses to undergo gender affirmation surgeries, but Stephens knew it was what he wanted. Next, he had to find a place that would do it. Clinics that perform gender affirmation surgeries exist all throughout the country and in Europe. However, there wasn’t one located close to home, which for him, was New Jersey.
“That was the hardest part — trying to find someone local who could not only do the surgery, but was good enough to perform the surgery,” Stephens explained. He did not want to risk having complications afterward without knowledgeable healthcare professionals nearby.
It was a chance email in the middle of the night to Dr. Edward Lee, one of Keith’s colleagues, that led to a connection. The plastic surgeon had his patient’s trust from their initial meeting.
“Trust means everything, especially with something so serious and [Keith] gained my trust from the minute I met him,” Stephens said. “I had nothing but faith in him.”
Keith became interested in gender affirmation surgeries as a medical student. One of his first cases was a vaginoplasty — plastic surgery to create a vagina on a patient affirming from male to female. The significance of the surgery stuck with him, “just what the transformation meant for the patient, how she was able to live in the body she’d always wanted,” Keith recalled.
However, gender affirmation surgeries were somewhat “on the fringes of surgery” at the time, he explained, adding “it wasn’t something that I could continue to train or learn about in America.”
So Keith continued his training in Belgium under Dr. Stanislas Monstrey, one of the top gender affirmation surgeons in the world. During his fellowship, Keith focused on microsurgery and breast reconstruction.
In Belgium, he became even more certain of “the transformative power” of these surgeries. “I thought [I] could help people that really not a lot of people out there are willing to help,” he said.
Although he initially performed top surgeries, as he described in a recent USA Today op-ed, his patients were “desperate” for bottom surgeries as well.
“Many were open about their plans for suicide should they not be able to have surgery,” Keith wrote. “I had never experienced such a demonstrable need for urgent medical intervention outside the trauma bay. My patients were at death’s door and needed someone to act.”
Aaron Potenza, program director for Garden State Equality, an advocacy organization for the LGBTQ community in New Jersey, said for many years transgender people would go to places like New York or San Francisco for care.
“I think that the fact that we now have folks in New Jersey who are doing gender confirmation surgeries is great because I know for a long time people had to go out of state,” Potenza said. “And one of the issues there is, besides that, that’s kind of a burden for anyone to have to do — but it definitely limits who has access because it’s costly.”
Lawmakers have also changed how transgender care is covered. In 2017 a state law was passed requiring Medicaid and people under state care to have their transition-related care covered.
Insurance ‘is really, really hard to maneuver’
Per WPATH’s guidelines, as well as insurance protocol, Stephens had some boxes to tick before his surgeries could take place.
He was required to undergo 12 months of testosterone, as well as live continuously for 12 months in the gender role congruent with his gender identity. He was also required to provide letters from two independent psychiatric evaluations by professionals confirming he understood the complexities involved with the surgeries.
Navigating the insurance coverage of his surgeries was “really, really hard to maneuver,” he explained. “They set a lot of obstacles in your way and sometimes you start to feel like the goal for them is for you to give up.”
For example, rather than inform Stephens that he was specifically missing one of the evaluatory letters from a psychiatrist, his insurance company would simply say his paperwork was incomplete. He has 16 letters from his insurance company that denied his paperwork without explaining what was missing from it.
“Every single time [my insurance company] denied it, they waited until the day before I was supposed to have surgery to deny it,” he explained. For this reason, Stephens said, it took him six months, and five canceled operation dates, to have one procedure done.
Performing the phalloplasty
An entire team performed Stephens’ phalloplasty with Keith, including a urologist, a gynecologist, and Lee, a fellow plastic surgeon. And there were decisions to be made, such as the location on his body that Stephens’ donor skin would come from for his penis (also called a neo-phallus).
“In this instance we chose to use the forearm,” explained Keith. The skin there is pliable, “quote on quote expendable,” and it’s the donor skin area he had the most experience with during his fellowship. “The bad part is, it’s not a very concealable scar,” he explained. “You will get a big skin graft on your arm.”
Other options are tissue from the thigh and the back.
The team also performed a scrotoplasty which involved using testicular implants in existing tissue.
Phalloplasty is just one option for creating a penis, though. Another option is a metoidioplasty (also called a meta), which involves enlarging the clitoris through testosterone. It has a shorter recovery time and can become erect on its own.
However, the penis is small after a metoidioplasty, explained Keith. “It allows some patients to stand to urinate but they’ll never be able to achieve penetrative intercourse with it,” which is a goal for many patients.
‘You’re there to help, you’re not there to judge’
Stephens’ gender affirmation surgery at Rutgers has been his most positive experience with healthcare to date. Usually, he said, it feels like there’s “a lot of judgment,” including providers who ask crude questions about body parts, or invoke religion.
“That’s not okay for anyone in healthcare, period, point blank,” he said. “You need to remember what you’re there for — you’re there to help, you’re not there to judge. You’re not there to bring God in.”
This type of judgment is exactly why Keith urges more healthcare providers to be trained to provide supportive care for transgender patients.
Keith recalled a patient he had last year who was affirming from female to male. This patient, “because of their trans status, basically, did not have any gynecological care even though they were in their 30s,” he continued.
It turned out that the patient had cervical cancer that was not diagnosed until a gynecologist’s evaluation before the hysterectomy.
“That’s devastating, because it’s a young person,” Keith said. “[Cervical cancer] could have been caught a long time ago with an annual Pap smear.”
‘You can live a great life if you put yourself first’
Today Stephens is engaged to his long-time partner and attending aviation school to become a pilot. He spoke with Healthline about his groundbreaking surgery at Rutgers because he feels it’s his mission to “bring light to something that is usually swept under the rug and not talked about and done in the shadows.”
Stephens wants other transgender people to know that “those experiences that you have, those bad things you go through and those negative thoughts you have, you’re not the only one thinking it,” he said. “You’re not crazy. Nothing is wrong with you. You can live a great life if you put yourself first.”
Both Stephens and his fiancée Alicia Sheppard, 29, wish more people were educated about gender dysphoria.
“[People] don’t understand that it is a mental disorder and it’s really serious for some people,” Sheppard told Healthline. “I feel like that’s where a lot of the negativity comes from, because people don’t understand what other people go through in their head.”
The past several years have been “really, really, really trying,” Stephens said, but he’s grateful that he stuck with it.
“I’m come out on the bright side of it, and my life, it’s done complete 360,” he said. “No lie — everything has turned around when I started focusing on myself and really trying to become happy for me.”