This Intersex Runner Had Surgery to Compete. It Has Not Gone Well. – The New York Times

Annet Negesa, Ugandas 800-meter Olympic hopeful, says she was advised to undergo an irreversible surgery because of naturally elevated testosterone levels. Her career has never been the same.

Annet Negesa had just finished training in Kampala, Uganda, in June 2012 when she received a call from a doctor from track and fields world governing body. He told her that she would no longer be competing in the London Olympics because her testosterone levels were too high for competition.

I went back into the house and started crying, she recalled.

Negesa was 20 at the time and one of the top athletes in her country, a promising middle-distance runner who had set a national record for 800 meters earlier in the year at a meet in Hengelo, the Netherlands. She was a three-time national champion and took home a gold medal at the 2011 All-Africa Games. The Uganda Athletics Federation named her athlete of the year.

World Athletics, formerly the International Association of Athletics Federations, or I.A.A.F., track and fields world governing body, did not catch Negesa using performance-enhancing drugs. Rather, she is an intersex athlete.

She identifies as female and was born with external female genitalia but also with internal male genitalia that produce levels of testosterone that men do. According to sports officials, that gave her an unfair advantage over most women in some events.

What makes Negesa different from so many other intersex athletes is that she tried to alter her body with surgery so she could continue to compete. Negesa claims that a doctor for World Athletics recommended the surgery. The federation denies this.

For seven years, Negesa, 27, refused to speak about what happened. But time did little to assuage her grievances.

Now I see my body as different, very, very different, she said. I dont know how to talk about it.

The years since the surgery have been a struggle. Negesa has battled persistent headaches and achy joints. Her postoperative care, she said, has not included the kind of hormone treatment that might have helped her body adjust to the change.

What happened to Annet is dangerous, and happened because she wanted to compete, said Payoshni Mitra, a researcher and activist on gender and sports who has lectured on the topic of intersex athletes.

For the past decade, Mitra has stood alongside numerous athletes with naturally high testosterone levels, including Caster Semenya, the South African middle-distance champion, and Dutee Chand, the Indian sprinter. Negesas case, however, was one of the most difficult ones for Mitra to reconcile because Negesa opted to have surgery.

For years, World Athletics has struggled to create rules that maintain a level playing field for the overwhelming majority of women with only female genitalia without impinging on the human rights of intersex people, who account for roughly one in every 2,000 births. A study this year found that female athletes with male testosterone levels are overrepresented in womens middle-distance races.

World Athletics, in a decade of research, found that nearly seven in every 1,000 elite female athletes are intersex athletes with levels of testosterone within the male range. Some endocrinologists have concluded it remains unclear whether high testosterone gives athletes a competitive edge, but many scientists believe it does.

After years of litigation, the Court of Arbitration for Sport in May upheld World Athletics testosterone restrictions for female athletes in races with distances from 400 meters to the mile. The court ruled by a 2-to-1 vote that the restrictions were indeed discriminatory but also a necessary, reasonable and proportionate means of achieving the World Athletics goal of preserving a level playing field in womens track events.

Most women, including elite female athletes, have natural testosterone levels of 0.12 to 1.79 nanomoles per liter, World Athletics said, while the typical male range after puberty is much higher, at 7.7 to 29.4 nanomoles per liter.

Intersex athletes who want to participate in middle-distance womens track events must take hormone-suppressing drugs and reduce testosterone levels below five nanomoles per liter for six months before competing, then maintain those lowered levels.

But Negesa, the eldest of nine siblings raised in a village in Jinja, Uganda, southeast of the Nile, had a much more invasive intervention after she learned in 2012 that she could not compete.

She said a World Athletics physician, Dr. Stphane Bermon, told her she needed to undergo medical treatment and was given surgery as her first option: a gonadectomy to remove her internal testes.

I love my sport so much, thats why I decided to go for the surgery, she said in a recent video interview from Germany, where she now lives.

After Negesa appeared in a documentary on German televisions ARD network in October, World Athletics issued a statement denying that it participated in or recommended a specific treatment to Negesa.

Dr. Bermon has never met the athlete in question and was not at either the consultation in Nice nor the surgery she speaks of in Uganda, the statement said. Through a World Athletics spokesman, Dr. Bermon declined to comment.

Negesa said she traveled alone to Nice for medical tests soon after learning she could not compete. She recalled having her body measurements taken by two doctors who spoke in French. Negesa speaks Swahili and English.

It was so weird, she recalled. I was shy.

She returned to Kampala for treatment, and paid $900 for the procedure.

On the morning of her surgery in Kampala, she had little knowledge of what she was about to undergo. Doctors had told her that it was a simple surgery and that she would return to competition in a few weeks.

I woke up in the morning feeling cuts on my body, she said. I felt so scared. I didnt know that I was going to be cut open.

She hasnt returned to the sport and has suffered from depression and joint pain since the operation.

Negesas medical record from the Womens Hospital International & Fertility Centre in Kampala was reviewed by The New York Times and confirmed that World Athletics, then known as the I.A.A.F., recommended a thorough medical examination, citing the high levels of testosterone in her body. The report states that after her testing in Nice she had a gonadectomy in Kampala. The document states that her surgeon in Kampala, Dr. Edward Tamale Sali, did not start her on hormone therapy because he was awaiting further discussion with Dr. Bermon.

Dr. Tamale Sali declined to comment.

In 2013, Dr. Bermon, now director of the World Athletics health and science department, published a report citing four unidentified athletes from developing countries who were referred to hospitals in France for naturally high testosterone levels.

I think I was the first one, Negesa said of the four athletes cited in the study. She said Dr. Bermon was the World Athletics official who first called her in 2012.

After Negesas appearance in the German documentary in September, 25 French athletes wrote to World Athletics, the International Olympic Committee and the minister of sports and health calling for an investigation.

The French minister of sports and minister of health opened a joint investigation in October.

In its statement, World Athletics said it does not advise athletes on preferred treatments and did not do so in this case. The global federation has never forced any athlete affected by its regulations to undergo surgery, nor paid for any of their treatment.

In March, the United Nations Human Rights Council condemned World Athletics attempt to regulate female athletes testosterone levels. And in May the World Medical Association advised physicians around the world to abstain from implementing the new regulations.

They are assigned female at birth and have grown up to have a female gender identity, so theres no question that they belong in that category, said Katrina Karkazis, a fellow at Yale Universitys Global Health Justice Partnership.

Negesa said that returning home, where L.G.B.T. individuals are openly condemned, would lead to imprisonment or death.

She filed for asylum in Berlin in September, and was granted it this month.

She runs every day, with the hope of one day returning to international competition. Her next step, though, is litigation. I need to take them to court, she said of World Athletics, for violating my human rights.

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This Intersex Runner Had Surgery to Compete. It Has Not Gone Well. - The New York Times