Women without a uterus seek alternatives to being mothers – 05/13/2023 – Health

At age 14, interior designer Thaysa Godoy, 44, from Belo Horizonte, learned that she had no uterus when her mother took her to the doctor to investigate the absence of menstruation.

“It was a shock, I cried a lot, but the doctor was very wise when he told me: ‘I’m not saying that you won’t be a mother, just that you won’t be able to conceive. You ovulate, maybe your mother doesn’t conceive for you?’ “

Social worker Márcia Marques, 47, from Goiânia, received the news abruptly, aged 17, during an ultrasound. “The technician looked at me and said: ‘Did the doctor tell you that you don’t have a uterus and that you’ll never be able to be a mother?'”

Márcia had already had her first ultrasound at the age of 15, due to her lack of menstruation, but at the time, the doctor only commented that she had a baby uterus and prescribed hormones for two years as a treatment, which led her to believe that there was a solution. for the problem.

As with Thaysa and Márcia, the diagnosis of Rokitansky syndrome, characterized by the absence of a uterus and/or vaginal canal, affects 1 in every 5,000 women and still causes a lot of suffering, doubts and misinformation.

But many of them become mothers through adoption or solidary wombs, allowed in Brazil when it does not involve financial negotiation. In recent years, uterine transplantation has also become a possible alternative, although still infrequent.

In Brazil, there is only one report on this type of transplant that resulted in pregnancy. It took place in 2016, at the Hospital das Clínicas in São Paulo. A woman with Rokitansky syndrome received a uterus from a brain-dead donor, became pregnant soon after, and had the baby in December 2017. In the United States, at least 33 women received a uterus transplant between 2016 and 2021.

Thaysa underwent in vitro fertilization (IVF) at age 30 and relied on her mother’s belly, Dayse, to generate her daughter Isadora, now 12 years old. At the time, she had been married for four years to Luiz Frederico.

In IVF, mother and daughter underwent hormone treatment. Thaysa, to produce more eggs that were later fertilized with her husband’s sperm; the mother, to prepare the uterus for pregnancy. Pregnancy was confirmed on the third attempt. Dayse was 55 years old and was already in menopause.

“When I got the Beta [HCG] positive, it was a lot of emotion. My mother had to help me. My husband joked that he had gotten his mother-in-law pregnant.”

Five years after Isadora’s birth, the couple decided to have a second child, using embryos that had been frozen. But this time it was Thaysa’s sister-in-law, Ana Carolina, who lent her belly for the pregnancy. There were three failed attempts.

A new treatment was performed, and the pregnancy was confirmed on the second attempt. “This time it was totally different because my sister-in-law lives in the interior of Minas Gerais. She only sent me pictures of the ultrasounds. I had to let go of the process a lot.”

Forty days before giving birth, Thaysa started stimulation to produce milk. In the first pregnancy, she had not been able to breastfeed her daughter. “When Ana Victoria was born, I grabbed her like a lioness. I breastfed her for six and a half months. It was wonderful. I needed to live that.”

Márcia says that when she was diagnosed with the absence of a uterus, she had been dating her current husband, traffic instructor Weber Gomes da Like, for a month. “My self-esteem was very shaken. I spent days hiding from him so as not to tell, I just cried.”

But when she found out, her boyfriend immediately supported her. “He said: ‘If you needed a lung, a heart, it would be more complicated. But there are many children in need of a father and a mother, let’s marry and adopt.'”

After three years of marriage, the couple entered the adoption queue, and Vinícius arrived two years later. He was five months old. “He brought all the fulfillment I had hoped for as a mother, filled my heart and is a great joy in our lives.”

With her son, who is now 21 years old, already grown up, Márcia decided to go back to school and, at age 40, graduated in social work. She also became one of the pioneers of activism on Rokitansky syndrome in Brazil. She maintains an Instagram page to exchange experiences and knowledge with other women.

Dermatologist Claudia Melotti, 52, found out that she had no uterus when she was 14, but she was only diagnosed with the syndrome when she was 20. “Lucky was having a wonderful mother who, back in the 1980s, told me: if you want, when you decide, however you choose.'”

She says that the doubt whether or not she would be a mother persisted until the age of 47, when she decided that she would not have children. “I practice motherhood as a doctor, as an aunt, as a daughter, as a friend, in all my relationships. I know the window of opportunity that a woman has to be a mother, but I also know how beautiful it is not to have children.”

Three years ago, she and two other women, administrator Luciana Leite and daughter Isabella Leite Barros, a young woman who was also born without a uterus, decided to create the Roki Institute to gather adequate information about Rokitansky syndrome, the forms of treatment and access to it.

“We have terrible reports of doctors disrespectful to the girls or who even advised them inappropriately. It is a minority, of course, but we even have the case of a doctor who instructed the girl to dilate [do canal vaginal] with a Bic pen”, says Cláudia.

Without adequate information, she says that a girl mistakenly dilated the urethral canal (where urine comes out), located just above the opening of the vaginal canal. “She lost her urinary sphincter and now uses diapers. Many women don’t have the culture of knowing our bodies.”

Among the fronts of the Roki Institute is the construction of a network of health professionals who are knowledgeable about the syndrome. “Because it is a rare disease, it often stays there in an isolated class and, if the student [de medicina ou de outra área da saúde] paid no attention, nor know what it means.”

She explains that in addition to the absence of the uterus and vaginal canal, up to 1 in every 15,000 women have another type of this syndrome, which can also cause bone, cardiac and renal impairment. The institute also offers therapy and support groups across the country.

According to Cláudia, many girls are more concerned with the impossibility of pregnancy than with the problems caused by the shortening of the vaginal canal, such as pain and bleeding during sexual intercourse. The problem can be solved with dilation or even reconstruction surgeries of the vaginal canal.

“In our group, we heard reports of girls who were depressed, and now, with more information, they feel better, they are managing to look at motherhood and opt for adoption, supportive belly or even feel calm and safe not to have children. “

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