“Good evening, I have a pain in my left leg, could it be the beginning of thrombosis? Has anyone experienced this?”
“Does anyone else in the group apply ECP to their chest?”
In dozens of Facebook groups about hormone therapy, trans men and women exchange information. There are several messages about estradiol cypionate, or ECP as the substance is more commonly called. Exclusively for veterinary use in Brazil, ECP is a hormonal agent used to correct anestrus (absence of heat) in cows, mares, sows and sheep. In humans, its use can cause liver damage, increase the risk of liver cancer and lead to thrombosis, heart attacks and strokes.
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A bottle of the medication costs around R$30 and can be bought without a prescription, online or in any veterinary store. In its package leaflet, ECP states that it “provides estradiol-17-B, probably the most potent of the natural estrogens”. In most Facebook groups about hormone therapy, talking about ECP is forbidden, and posts are deleted by the administrators. But in some, dozens of comments can still be read about the use of the substance.
Agência Pública spoke with trans women who currently use or have used ECP in their hormonal transition processes. They said that difficulties in accessing hormone therapy through Brazil’s publicly-funded Unified Health System (SUS) and the high cost of obtaining private care pushes them to self-medicate. In the case of ECP, the main attractions are the low cost of the drug, ease of access and, above all, the promise of supposedly faster results.
Trans women interviewed by Agência Pública also claim to have waited more than a year for an appointment with an endocrinologist to start hormone transition via the SUS. As for hospital care, the wait for sex reassignment surgery can exceed 10 years, they said.
Unequal access
Since 2008, SUS has offered free access to the transsexualization process, including hormone therapy, body and genital modification surgeries and follow-up care. In 2013, that right to access also included trans men and transvestites.
Even so, all the women interviewed said they had experienced episodes of discrimination and transphobia on the part of non-specialized health professionals when they tried hormone therapy through the public system. Many of them don’t have access to specialized care for trans people in the municipalities where they live, and some reported that professionals refused to see them in non-specialized units.
According to the Brazilian Health Ministry, there are currently only 12 outpatient services and 10 hospital services qualified to provide specialized care for the transsexualizing process, located mainly in capitals or large cities.
“ECP is a hormone used for cows, for horses, living beings that weigh more than 400 Kg.”
Holistic therapist Ângela Palmieri, 40, began her hormonal transition at the age of 12, hiding it from her parents. At the recommendation of a friend, she began to self-apply Perlutan, an injectable contraceptive containing algestone acetophenide and estradiol enanthate, substances that can inhibit ovulation in cisgender women.
Palmieri, who lives in Guaraci, in the interior of the state of São Paulo some 460 km from the capital city of Brasilia, has never had access to a public health unit specializing in transgender care. Unable to pay for a private consultation with an endocrinologist, self-medication was her only alternative.
At the age of 32, she realized that the contraceptive Perlutan was no longer having any effect on her body and decided to look for more “effective” alternatives. Following the advice of other trans women in Facebook groups, Palmieri applied 1 ml of estradiol cypionate a week for a year, without medical supervision.
“I was feeling a lot of pain in my legs and my leg veins started to bulge. That’s when the doctor said it could be the start of a thrombosis,” Palmieri said. Frightened, she decided to stop using ECP immediately. She also developed lipomas (benign fatty lumps) her abdomen, arms and breasts, which she still has today, seven years after she stopped using the substance.
An act of transphobia
Anna Paula Oliveira, an endocrinologist specializing in trans health, said that the greatest danger of ECP is the amplification of the drug’s adverse effects.
“ECP is made for species with very different weights, with different metabolization. It’s a hormone used for cows, for horses, living beings that weigh more than 400 kg. I can’t use the same dosage of this substance for a person who weighs 60 or 70 kg. You don’t know if it’s going to work or not. It’s almost a game of Russian roulette,” she said, adding that the prescription of synthetic hormones for trans women is particularly sensitive, as they use them for prolonged periods.
“While cisgender women resort to hormone replacement during menopause for a maximum of five years, trans women can do so for more than 50 years. Their cases require regular medical monitoring and, above all, the use of hormones with the lowest potential for side effects,” Oliveira said. “Prescribing injectable estradiol would almost be an act of transphobia. It’s as if I thought that my trans patient deserved the worst quality treatment, while I could give her the gold standard treatment.”
The “gold standard” treatment she refers to is the one recommended by most endocrinologists for trans women looking to start hormonal transition: 17β-estradiol, a dermatological gel prescribed to relieve menopausal symptoms. This compound is a natural substance, similar to that produced by the human body. Because it is applied to the skin, its gel formula facilitates the dosage of hormone present in the bloodstream, avoiding overdoses of the substance.
The doctor warns of the risks of self-medication, with indiscriminate combinations of hormones and injectable and oral contraceptives.
“We know that excess hormones can result in liver damage and increase the risk of liver cancer, thrombosis and cardiovascular accidents such as heart attacks and strokes,” Oliveira said, adding that many complications are difficult to detect and only possible to discover in time through medical monitoring and regular blood tests.
However, medical care in Brazil’s private network is expensive for both cis and trans people. A consultation with an endocrinologist can range from R0 to R0, according to the Doctoralia appointment booking platform, while the array of laboratory tests required to monitor hormone levels can reach R,600 in private laboratories.
Transphobia in the healthcare system leads to self-medication
Ana Vitória Saraiva de Azevedo Pontes began her hormonal transition at the age of 19, while studying law at the Federal Rural University of the Semi-Árido (Ufersa) in Mossoró, Rio Grande do Norte. She says that the specialist refused to see her and carry out the blood tests needed to start the hormonalization process.
“The doctor didn’t even look me in the eye. That really hurt me. That doctor’s transphobia definitely pushed me towards self-medication,” she said.
Saraiva de Azevedo Pontes moved to northeastern Brazilian state of Ceará, where the only public health unit specializing in trans health care is in the state capital, Fortaleza, more than 200 km from where she lived. After two years of experimenting with various combinations of contraceptives and testosterone blockers, she decided to try ECP at the suggestion of a friend.
“Today, I know I was irresponsible, but at the time I had no other option. I was at the mercy of the information I got from my friends or on the internet. I didn’t have access to medical care and I didn’t have the money to buy the manipulated human estradiol that I use today,” Saraiva de Azevedo Pontes said.
She said she learned how to administer intramuscular injections from friends because health professionals at the local clinic refused to do it. For a year, she injected 3.5 ml of the veterinary hormone into her own thigh every two weeks.
Hormone therapy is almost a mental health treatment.
“It was extremely uncomfortable, my hands were shaking and I could barely push the liquid out, because the substance was so thick,” she said. At the time, a 10 ml bottle cost about R, which was enough for almost three applications. After a year of using ECP, she began to experience severe abdominal pain, mood swings, irritability and crying spells.
It wasn’t until 2020 that Saraiva de Azevedo Pontes had her first appointment with an endocrinologist, thanks to the creation of an outpatient clinic dedicated to trans people at the Ufersa Faculty of Medicine. She stopped self-medicating and started following a hormone transition plan under medical supervision.
She currently works as a civil servant for the Public Prosecutor’s Office in the state of Mato Grosso. Despite the financial stability she now enjoys, she chose to stop her hormonal transition two years ago.
“That chaotic start to the transition and several years of self-medication really messed with my emotions. It’s a lot of pain. A lot of emotional and physical impact,” she said.
Oliveira said that hormone therapy for trans patients goes beyond a cosmetic procedure: “Hormone therapy is almost a mental health treatment. Most trans people do have an interest in having these body modifications in order to feel more comfortable in their own skin, more suited to their own identity.”
Not enough units
When a trans person arrives at SUS primary care, they go through the initial reception, which directs them to specialized services, which can be outpatient (appointments with a psychiatrist, psychologist, social worker, endocrinologist or general practitioner and nurse), from the age of 18, or inpatient (urologist or gynaecologist and plastic surgeon), for patients over 21.
But the system is still unable to meet the demands of the approximately 3 million trans and non-binary people — almost 2% of the Brazilian population — according to research by the Botucatu School of Medicine (FMB). In the northern region, for example, there are no outpatient services authorized by the Brazilian Health Ministry, according to FMB. As for hospital services, only the state of Pernambuco has a unit qualified to care for all of the northeastern states: the Hospital de Clínicas of the Federal University of Pernambuco (HC/UFPE).
The shortage is even more visible in the states of Tocantins, Mato Grosso, Amapá, Roraima and Rondônia, where no outpatient or hospital unit is qualified to provide this type of specialized care. Asked to comment on the lack of specialized services to assist the trans population, Brazil’s Health Ministry did not respond.
In a statement, the Health Ministry said that a “proposal for a new program aimed at the trans population” to expand the provision of specialized care, should be launched in the second half of the year.
