Project helps women who were born without a uterus – 07/02/2023 – Equilíbrio

Claudia Melotti, 52, was 14 years old and was still playing with dolls in Americana (127 km from SP) when she heard from a gynecologist that she had been born without a uterus and could not be a mother using the conventional method. At 20, after a frustrated sexual relationship, she believed she had a more rigid hymen that was difficult to break.

The complete diagnosis in a second gynecological consultation revealed a rare syndrome that affects one in every 5,000 women, according to an article in the Brazilian Journal of Gynecology and Obstetrics.

It is called Rokitansky Syndrome, a genetic condition of unknown cause that affects the female reproductive system.

Patients are born without a uterus and vaginal canal or have them malformed and smaller than what is considered normal for their age group. In practice, this makes gestation in adult life impossible.

It was only at age 45, already married and with her career as a dermatologist stabilized, that Melotti decided to expose that she has the syndrome to someone outside her family.

She wanted to help a teenager who had been to 17 different gynecologists with her mother looking for information about the same diagnosis.

The patient had never heard of the condition, and she didn’t know how to manage it, she says. “I didn’t know other women with the same diagnosis as mine, with whom I could identify and share anxieties and fears”, says the doctor. “I wondered how that teenager might be feeling, so I had the impulse to tell her that I have the same condition and asked to meet her and her mother.”

Three years after her first conversation with Isabella Barros, 21, and Luciana Leite, 52, in 2020 they created the Roki Institute. The group seeks to welcome women diagnosed with the syndrome and their families, both remotely and in person, through the approximately one hundred registered offices throughout Brazil.

The team of gynecologists, physiotherapists and psychologists disseminates information about treatment, sexuality and motherhood, including at public and private universities. So far, 300 women have undergone therapeutic processes.

The institute has more than 2,000 followers on social networks, who often report attempts to dilate the vaginal canal on their own, which can lead to injuries or serious sequelae. One of the cases discussed, according to Melotti, was that of a woman who dilated, by mistake, the urethral canal (where urine comes from) and currently tells that she needs to wear diapers.

The project also seeks to provide access to appropriate dilators for the reconstruction of the vaginal canal, if the patient wants to have penetrative sexual intercourse, and to make women aware of the need for the surgical procedure only in extreme cases of non-dilation.

According to Eduardo Motta, a gynecologist at Hospital Sírio-Libanês, the diagnosis of Rokitansky Syndrome is made by ultrasound and is usually performed during adolescence, when girls do not have their first menstruation.

“However, Rokitansky syndrome is just one of the situations associated with non-menstruation. People who have not menstruated after 16 years old should seek gynecological care to identify the cause and receive guidance on treatment”, he says.

Already in adulthood, during the first sexual intercourse, they may experience some difficulty, discomfort and pain during penetration, due to the absence of the vaginal canal or having it very short and narrow (about 2 cm).

It can be reconstructed by dilators or surgery, which allows you to practice like anyone else who doesn’t have the condition.

People with the condition have malformations only in the uterus and vaginal canal. This means they have ovaries and develop all the female characteristics like breasts. The genitalia are the same as any female, with vulva and hymen.

Despite not menstruating or being able to get pregnant, people with the syndrome can have biological children through the assisted reproduction procedure in a supportive belly, because they have viable eggs.