Crippling Surgery and Doctors' Ignorance: How Do Intersex People Live?

According to the UN definition, an intersex person is a person born with sexual characteristics that does not fit typical binary notions of male or female bodies. These characteristics include both genitals and gonads, and a set of chromosomes. Intersex people can have about forty variations of sexual characteristics and each of them depends on the type of reproductive organs, secondary sexual characteristics, hormone levels, chromosomes, gonads, and genitals. According to experts, about 0.5% — 1.7% of people around the world are born with intersex variation; their number is about as many as red-haired people on the whole planet.

Most intersex traits are not detected until people reach puberty or have problems conceiving a child. Sometimes the differences are relatively small: a girl may have an enlarged clitoris; a boy's external urethral orifice may be located on the underside of the penis or in the perineum. Sometimes the external characteristics of an intersex person are completely absent, in other cases, children may have genitalia that is kind of a cross between male and female. The presence or absence of intersex variations can only be verified by analyzing the level of sex hormones, making a pelvic ultrasound, and karyotyping.

"I did not know that it was possible to somehow differ in internal characteristics"

Irina Kuzemko was born with mixed gonadal dysgenesis. With this variation, the gonads do not develop into the testicles or ovaries, but remain gonadal cords — just pieces of tissue. In some cases, one of the cords develops into the testicle, while the other does not. The karyotype with this variation is most often X/XY, but sometimes XY. For a long time Irina was sure that she was an ordinary girl, but when all her peers had puberty, nothing happened to her.

"I didn’t know that it was possible to somehow differ in internal characteristics," she says. "I had a terrible complex about my small breasts, I was worried about it, it was very hard. I could hardly persuade my mother and grandmother to take me to the doctor. I had an ultrasound, and the doctor decided that something was wrong with my ovaries, so I was prescribed a heat therapy.

In her hometown, the doctors did not know what to do with her. So she had to go to Moscow. There, no one from the specialists spoke to the girl, they did not explain anything. They just took some blood samples and left her to sit in the hallway. And her father was called into a doctor's office. Only later he announced to her as a fait accompli: "You have something wrong with your ovaries, so you will undergo a surgical treatment, and your hormonal level will be under manual control." Irina decided that she had something like polycystic ovaries, some of which would simply be removed. She waited for hormones to be prescribed so that "the breast would grow as soon as possible."

"But even on hormone therapy, I did not develop like an ordinary girl: my chest still grew poorly, my period began only at the age of 17", she continues. "I had no idea what was happening to me, and was obsessed with puberty literature, trying to find answers in it. I could not understand what was wrong with me."

Irina discovered the truth only in a conversation with her father when she mentioned the episode of "House, M.D.", in which one of the patients had undescended testicles in the stomach. Then he replied that she had "something like that" as well. Irina learned about the intersex people much later, when she accidentally stumbled upon a video on the Internet. This knowledge further helped her to understand the features of her body.

She calls the greatest happiness in life that she recognized her diagnosis, compares those sensations with winning the jackpot. "For the first time in my life I had a diagnosis — gonadal dysgenesis. I learned that I am not alone and that there are intersex people all over the world. I can not put this happiness into words. Because before the age of 22, I plunged into the abyss of darkness, depression and self-hatred. Then I developed a very strong derealization, I could not believe that this life was happening to me."

Irina says that now she is doing well, noting that the knowledge of the diagnosis divided her life into 'before' and 'after': "Even the worst moments are now better than the best ones in that life." However, subconsciously, she still compensates for "unfemininity", for example, she does not leave the house without makeup. Her relationship with her parents is also difficult: her father did not admit his guilt; moreover, he said that he shouldn't have shown her the medical documents. And her mother tries not to touch on this topic and does not use the term "intersex".

Sex Reassignment at Birth

Most doctors still agree that the gender must be immediately assigned to a baby right after the birth, so that later he or she does not face stigma and discrimination. But the decision-making process for parents is always extremely difficult — they need to take into account not only the appearance of the child’s genitals, but also the further development of his or her brain and body. Kimberly Zieselman, an intersex woman and CEO at interACT, intersex youth advocacy organizations, argues that the risk of choosing the wrong gender at birth is up to 60%. And she recommends that parents make only reasonable assumptions regarding the gender, and also, in her opinion, it is worth being prepared for the fact that in future the child can identify him/herself with another gender.

That is exactly what happened with Vladimir (he asked to call him by that name). He has MRKH syndrome: according to the documents, he is a woman, but with a female karyotype he has no uterus and vagina. Vladimir was brought up as a girl. The parents, after consulting with the doctors for some time, believed that he should be prescribed hormone therapy to make the body more feminine, but later this idea was abandoned.

"I have never felt like a woman, so now I think that going to the doctor and to find out if I can make the transition my variation can be dangerous: I have one adrenal gland and it is enlarged, and one kidney, it is also big", says Vladimir.

Ali has a higher level of female hormones than most men, and parts of the female reproductive system are present, but at birth, doctors determined his gender as male.

In adolescence, he had problems with gender identity — he did not feel like a boy, and therefore he decided that he is probably a girl. "As early as 10—12 years old, I remember asking God to make me a normal boy", recalls Ali. "When I was offered a surgery, I easily agreed. Moreover, I wanted to make the transition, to become a transgender woman. Intersex people are not allowed to make the transition, I do not know exactly for what reasons, perhaps because physiologically, intersex people are not men and not women initially. I also had a gonadal cord removed when I had an appendectomy."

His mother reacted to the decision normally, asked if he would regret if he made the transition. Ali underwent surgery. The testicle was removed, it was advised by the doctor to reduce the risks of oncology, but he did not complete the transition. At the last moment, when they had to do the vagina, Ali decided to refuse the surgery, he realized that he did not want the transition. As a result, he spent three years with women's documents issued based on the certificate of transsexualism. Now he does not feel like a woman. He says that he has been growing up as a guy for 18 years and, of course, he "does not feel like a girl." "I realized that I have an intersex-gender identity, a changing, floating, fluid gender," explains Ali. "I decided to change the documents, because I didn’t really look like a boy either in appearance or behaviorally." After he lived with the female gender, on the one hand, he became calmer, on the other, he realized that the problem was not gender identity, but "self-doubt as a guy."

Crippling or Normalizing Surgery?

Nevertheless, since the 1950s, doctors have performed operations on infants in order to 'fit' them into social norms. However, emergency surgery is needed only in rare cases, for example, when a child has problems urinating or lack of medical care carries a threat to his or her life. In most cases, intersex operations are performed only for cosmetic purposes, so that the appearance of the child matches the assigned gender.

Plastic surgeon, urologist, andrologist Yevgeny Leshunov believes that in infancy, up to three years, these operations are possible, although they may have consequences: "These are cicatricial deformities, and so on, but at least the child doesn’t experience this psychologically, but encounters problems later when he or she begins to compare why do I have this and others have that?" According to him, micropenis correcting or clitoris reducing surgery can be done at a later age. This requires both hormone replacement therapy and surgery.

Senior Lecturer at the Department of Clinical Psychology and Psychophysiology of the Ural Federal University Anna Gizullina is convinced that "normalizing" operations on intersex children can lead to serious physical and psychological consequences.

"When you remove the genital glands, which we believe do not meet the standards for the development of this child, the person turns out to be hormone-dependent for life", she says in an interview for the YouTube channel Illuminator. "This is a rather difficult situation. In some cases surgery on genitals leads to urination abnormality as well as sexual disorders in the future. It is necessary to realize the pros and cons of this operation, bear in mind the child's future and what kind of future is desired for him or her. If the operation does not matter for normal life, it should be postponed as much as possible. We need to stop making children fit certain standards."

In the modern medical community, there is a perception that surgery in infancy helps a child better adapt to the official gender, but as far back as 1965 this theory was refuted by the psychologist John Money who performed a horrible experiment on the boy David Reimer. Dr. Money argued that the development of children, who have undergone a sex reassignment surgery and are brought up according to the appropriate gender model, proceeds normally and they easily adapt to the new gender. The experiment failed, and at the age of 8‑9 years old Reimer behaved like a normal boy. After finding out the truth, he made three unsuccessful suicide attempts. Later, he returned to the male gender, having undergone an operation and hormone therapy.

The World Health Organization now considers such operations crippling and harmful without a patient's consent, because in fact they violate human rights. The same opinion is held by the other renowned international human rights organizations including:The UN Committee on the Rights of the Child, Amnesty International, Human Rights Watch, the Council of Europe, the Fundamental Rights Agency.

"We offer the patients only what we can do"

However, in the Russian realities, for an intersex person it is difficult to find a specialist who is qualified enough to correctly analyse the patient's condition and, if necessary, prescribe treatment. This is indicated by the absolute majority of intersex activists.

"Once I came to the doctor, and she told me: "I know what it is, I studied,‟ but at the same time she called me a hermaphrodite," recalls Ali.

"The term 'hermaphrodite' was actually used by physicians in the past, in particular, when describing the variation of ovotestis, but it is no longer used as it was found derogatory. Moreover, biologically, humans and mammals in general cannot be hermaphroditic: they do not have two simultaneous reproductive systems.

Daria has a syndrome of complete insensitivity to androgens. She was operated on before she came of age, also without warning of the consequences. "In my histology, they didn’t even write anything, just one word, "striped", says Daria. "I showed it to my doctor one day, she also laughed. All in all, it shows the level of medicine in Russia. Before the surgery, I was not warned that after it I would have to take hormones for life. No one really explained what they would do during the operation." Daria says, that she was very shy and did not talk about anything with the doctors.

Now she admits that she wants to bring to nothing but her communication with doctors "because it is not pleasant at all to feel like an experimental rat." She has to keep going to doctors all her life. She has already seen about twenty gynecologists and endocrinologists all over the country, and, according to her, only one of them "knows at least something." "At the same time, these are all highly qualified doctors with high credentials, but they don’t even want to think that something might be wrong, that technologies evolve and new studies are conducted, and so on," she complains of domestic specialists.

According to Daria, after the operation, hormone replacement therapy was picked at random, without being completely tested. As a result, only after many years of searching, she managed to find a specialist who had gone deep into the study of her past medical history.

Intersex people in Russia say that it is extremely difficult to find information about the intersex in Russian. Most of the works and data on the variations available on the Internet is in the English language. According to the obstetrician-gynecologist Christina Belopolskaya, low awareness of doctors is primarily due to the lack of dedicated experts and poorly equipped hospitals.

"We do not have a separate speciality, as abroad. There are only two options: paediatrician and therapeutist," mentions Belopolskaya to exemplify the problems with the Russian health care system. "We don’t even train such specialists, either paediatricians or gynaecologists or oncologists deal with it." She explains that one doctor cannot make a decision independently, and a council of physicians always discuss difficult cases. Moreover, you need to constantly conduct scientific and practical work and be familiar with advanced drugs and treatment methods.

According to her, so far the existing technology level in Russia trails behind the more developed countries: "Therefore, we offer the patients only what we can do. Sometimes, some patients can afford surgery abroad. The specialists themselves are not well informed. Previously, the patients underwent treatment in polyclinics, hospitals, and now this can be done in perinatal centres. We simply did not have such experience. Even IVF has been implemented relatively recent."

Intersex and Transgender People

First of all the risk of the operations is not the psychological impact on the patient, but rather depriving him or her of the source of natural hormones, despite the fact that in some variations, an intersex organism is capable of independently processing testosterone into oestrogen. Therefore, the best recommendation at the moment is to refuse surgery until the age when he/she can make an independent decision provided that there is no threat to his/her life. Russia has not accepted this recommendation yet.

Intersex people are mistakenly compared to transgender people, and although a certain percentage of people in the intersex community still change their gender identity, they are nevertheless in the minority. Ali tells that he agreed to surgery because he kept thinking in terms of the binary gender system: "There [in transgender forums], if you say that you don’t fully feel like a girl, real transgender women begin to condemn you saying that you are some kind of a pervert. They have a very binary world. I have never wanted to wear dresses or other women's clothes. Now I regret having performed the operation [even if not a complete transition], because now I understand that I am not a woman."

When asked about the further positive steps with respect to the "fixing" of intersex people, the people who shared their stories herein react in different ways, however, everyone agrees on the need to prohibit operations without patient’s consent and work closely with medical community. Today, such operations are prohibited only in Malta, but some parents still try to make their children "normal" by bringing them to some other countries for surgery.