Gloria, 29, lives with untold pain. A black cloud hang over her life when she discovered she was intersex.
“I lost both parents when I was two years old and I was taken up by my grandmother who lives in Bunyaruguru.
When I was in P5, I discovered that urine passed out of a small hole on top of my genitals. However, I found out that I had no vaginal opening,” she says.
I wondered what had gone wrong with me and why my grandmother and aunties had not told me about my condition. I became desperate. I wished my parents were alive to explain it to me. One day, one of my aunties told me that I was born with that condition and that my late parents knew about it, but had nothing to do,” Gloria says.
At first, Gloria says, her parents thought she had been bewitched by her stepmother. But when the doctors examined her, they were advised to consider surgery at the age of seven or 10. Unfortunately, they died before she turned seven.
“I am now 29 years old, but I have never experienced menstruation and I have never developed breasts. People describe me as a man and others as a hermaphrodite; it hurts me and affects my self-esteem,” she says.
According to a medical examination, the doctors confirmed that Gloria had a very small uterus and no vaginal opening. She also has high levels of testosterone (a male hormone) which is responsible for her condition.
“Betty Tibaleka, the host of the Untold Story, a local TV talk show, linked me to Kibuli Hospital for treatment. While there, a team of experts from Egypt examined and offered me free treatment in Egypt since my problem is mostly internal and urgently needs treatment.
However, I was supposed to cover my hormone test and air ticket costs. Consequently, the plan aborted as I did not have a penny. CORSU hospital asked for sh3m to carry out surgery and give me hormone therapy, but I have no money,” adds Gloria.
“I call upon Good Samaritans to help me, so that I can get treatment,” she appeals.
I cried myself to sleep
Her flat chest and male voice keeps one wondering whether Maria, 21, is a man or a woman. Doctors say she has dominating male hormones in her body. What is more, she has ambiguous genital organs.
“I grew up with my grandmother in Kalisizo, Rakai district. While I was young, my grandmother never told me anything about my sexuality. When I turned 12, I realised I had a growing penis in my private parts,” says Maria.
“When I asked my grandmother about it, she gave me a disquieting look. I got distressed and often cried myself to sleep. I kept pestering her for an answer, but in vain. One day, she explained that that’s how I was born. She told me to keep it a secret to avoid being stigmatised.”
Maria says every time she wanted to consult her friends about her condition, she refrained as she feared being stigmatised.
“It bothered me that I had this condition. I could not menstruate and I developed a male voice. I also had no breasts at all. Eventually, people began calling me names. Others laugh at me saying ancestral spirits cursed me. I feel worthless, as a result,” she laments.
Medical tests proved that Maria should have been a woman, although she has a masculine physique.
However, if treatment is delayed, her condition might be irreversible by the age of 23. Her treatment is estimated at sh3.5m at CORSU hospital.
“I appeal to all well-wishers, NGOs and the Government to come to my rescue and contribute towards my treatment.”
Not a boy and not a girl
By Viqué-Ocean Kahinju
Being born with both female and male organs can be quite distressing. People call you names and you struggle to fit in society
Learning about his intersexuality tortured him to bits. The truth is that William, 22, a resident of Jinja, was a boy in a girl’s body.
This upset him as arguments arose about him and some people considered him demonic.
“I found out the abnormality when I started to menstruate at the age of 15. I nearly fainted, but opted to keep it a secret. I did not know how to explain this mystery to any of my friends or relatives who had always known me as a boy,” says William.
“My dilemma began when my parents died while I was a small boy. I was left under the care of a stepmother, who probably did not realise I had a problem,” William adds.
He says the fear of being stigmatised kept him tight-lipped about his condition.
“I knew my life had hit a bumpy phase and thought I would die. As time went by, matters were not helped as I continued to menstruate.
Though physically I looked like a boy, it did not stop me from experiencing every natural process a girl undergoes.”
“I developed breasts. My hips were pronounced and my voice was feminine. But with the biology knowledge I had, I knew it was only girls that menstruate, develop breasts and hips. I could not find justification as to why this was happening to me,” William laments.
“Sometimes I desire to be in a relationship, but I am not sure whether I should get a female or male companion. I feel empty when people stare at me and call me names such as hermaphrodite. Sometimes I wish I was not born.
However, doctors explained, my conflicting hormones result from having both gonads (ovaries and testes),” William says.
Doctors also discovered that William has a vaginal opening under his penis instead of male testicles and ambiguous organs that the doctors later realised to be a vagina. Medical tests have further proved that he has a birth canal and a uterus.
“Having breasts and a vagina under my penis freaked me out. And the worst part is that whoever I ran to for comfort made fun of it. Some fuelled gossip about my gender ambiguity. It really worked my nerves. In fact, I dropped out of school,” William narrates.
“However, some Good Samaritans contributed sh500,000 and I had surgery. Both breasts were removed, but the nipples were preserved,” William adds.
“According to the medical tests, the uterus and birth canal ought to be removed as well, lest I develop complications. I was told I will need hormonal therapy. My penis will be enhanced and given artificial testes. I thank the Support Initiative for People with Congenital Disorders (SIPD) for giving me useful information about my condition.”
“I am now settled; knowing that intersexuality is a biological condition that can be solved. Nonetheless, money is the setback. I come from a poor family, so no one can raise the money required for the operation,” he adds.
Call for help
William’s surgery was set for last year but he had no money. The operation and drugs would cost sh4,080,000 at Comprehensive Rehabilitation Services in Uganda (CORSU) hospital. He calls upon well-wishers, NGOs and the Government to help him raise the money.
Break the silence
Julius Kaggwa, the executive director of Support Initiative for People with Congenital Disorders (SIPD) – Uganda, a non-government organisation that advocates and offers services for intersex people, says calling people with congenital disorders hermaphrodites is an ugly show of gender prejudice.
Kaggwa experienced first hand the discrimination as an intersex person before he underwent corrective treatment as an adult.
“The term ‘hermaphrodite’ is dehumanising. There is nothing like a hermaphrodite in human beings. These people are medically suffering from disorders of development,” he argues.
The life of the people with congenital disorders in Uganda is distressing. They are discriminated against.
“They may give up school, work and other activities. As a result, parents also abandon or kill babies born intersexual.
The public, intersex people and parents of intersex children need to learn that intersexuality is a medical condition like any other and can be solved,” Kaggwa notes.
“Parents need to treat these children as their peers. An intersex child can live a healthy life until the disorder is corrected. Professional counselling, however, is advisable if a child is overwhelmed by their intersex condition,” says Kaggwa.
For help: SIPD offices can be found on Plot 1306, Nateete-Masaka Road, and Adjacent Total Nateete. Tel: +256-414 27 47 82, +256 757 38 67 40 and +256 (0) 773 231 066.
Email: email@example.com or firstname.lastname@example.org
Ask the expert
Dr. Reuben Kiggundu, Gynaecologist at Mulago Hospital
Q What is the difference between a hermaphrodite and an intersex person?
A The intersex condition is often referred to as ‘hermaphroditism’ but it is different from hermaphrodites’ situation. A hermaphrodite has both male and female organs that are fully developed, while the intersex person’s genitals are either vague or confusing in shape.
They lie in between female and male. Intersexuality thus is an abnormality in the reproductive and sexual system of a person that causes their genitalia or an internal reproductive system to neither conform to a clearly male nor female body.
How exactly does one become an intersex person?
Genital ambiguity of an intersex person is a result of disruption or mismatch of genetic interaction.
With the complexity of genetic or chromosomal mismatch, the foetus may manifest a combination of both male and female characteristics. The child’s body shape becomes more confusing as it grows as it does not conform to a specific sex.
Can intersexuality be corrected?
Frequently, babies born in hospital are often operated on shortly after birth to correct their congenital disorders. They undergo a surgery to give them either a penis or vagina. However, surgical operations are carried out either in the early or later stages of one’s life, preferably at puberty.
Does intersexuality come with risks?
Babies born at home could be at a risk since such deformities are hardly noticed; if they are, they may never get corrected as most parents are terrified to seek medical assistance for their intersex children. They believe in myths and are afraid they will be stigmatised if people learn about their children’s abnormality.
This might pose risks to the baby if the deformity has health implications on its well-being. For instance, where the baby cannot pass urine as a result of a malformed penis or urethra or has bowel discomfort, such disorders are life-threatening and need immediate medical attention.
However, if the disorder has no immediate harm on the child, it could be corrected later in their life when they are old enough to make choices about their gender.