Women with rare syndrome have vaginal canal reconstructed with tilapia skin using a technique paid for by SUS


Tilapia skin has already been used in the reconstruction of the vaginal canal of 25 women in the country, the vast majority of them at the Assis Chateaubriand Maternity School, a public hospital that is part of the Hospital Complex of the Federal University of Ceará. The Brazilian technique, a pioneer in the world, began to be used five years ago in Fortaleza for patients with the rare Mayer-Rokitansky-Kuster-Hauser syndrome and is funded by the SUS (Unified Health System).

Generally, a patient with the rare condition is born without the upper two-thirds of the vagina, according to Alexandre Pupo, a gynecologist and obstetrician at Albert Einstein and Sírio-Libanês hospitals. As a result, these women also cannot get pregnant and have restrictions on sexual relations.

“For some unknown reason, a rudimentary formation of the uterus can still occur, it is very small, sometimes even without the cavity, or it may not exist”, says the doctor.

According to Pupo, the diagnosis usually arrives between the ages of 14 and 16, with an unusual delay in menstruation. In other cases, the syndrome is detected when the woman reports to the doctor having difficulties during sexual intercourse.

This was the case of factory operator Maria Jucilene Moreira Marinho, 27, the first woman in the world to undergo a vaginal reconstruction procedure with tilapia skin, in April 2017.

Jucy, as she is called, found it strange not to have her period when she was 15. It was then that she decided to go to the gynecologist with her mother where she lived, in Lavras da Mangabeira, in the interior of Ceará. She reports having suffered from the unpreparedness of the professional.

“The doctor told me that I didn’t have my period because I was pregnant. I told him I was a virgin and, even so, he insisted that I was pregnant. It was only after the physical examination that he realized that I was telling the truth.”

She says that the doctor sent her for an ultrasound, but when the technician couldn’t locate the uterus or ovaries, she had to be content with the information that the machine was faulty.

There began a three-year saga of consultations, tests and even unnecessary surgery on the hymen before finally receiving Rokitansky’s diagnosis.

“This last doctor who did the surgery for nothing was unhappy for not solving the case and paid for my tests. That’s when I arrived at the Fortaleza hospital and, finally, I received the correct diagnosis.”

Leonardo Bezerra, assistant professor of gynecology at UFC (Federal University of Ceará), says that the surgery with tilapia lasts 30 minutes. “We make the vaginal canal by covering it with the fish skin around it in an acrylic mold. It is minimally invasive”

Subsequently, the patient’s tissue cells and growth factors are released by the tilapia skin and, thus, a new tissue appears with cells similar to those of a real vagina.

Bezerra was inspired by the technique used for burns, created at the same university and already used successfully. “It has shown to have faster, cleaner healing and no inflammatory process.”

Despite the relief of finding out what was happening to her, Jucy says she went into depression. “I cried, my dream was to have three children. It took me a while to get along, because I didn’t want to explain the syndrome, that I couldn’t get pregnant. It’s exhausting.”

Shortly after the diagnosis, Jucy met businessman Marcus Vinícius, 28, who lives in Cerquilho, in the interior of São Paulo, and they started dating virtually. “He was understanding, said he would wait and that we could adopt a child. That’s what love is.”

At first, Jucy would undergo surgery with her own skin — a routine procedure used for years, with a higher cost, in which the material is removed from the patient’s thigh.

That’s when she met Leonardo Bezerra, a doctor who first came up with the idea of ​​using tilapia skin on patients with this condition.

“They called me asking if I would do experimental surgery. They said that I would be a guinea pig, but that it would be less invasive. I accepted because the team gave me confidence from the beginning.”

Jucy says that he had no problems or pain in the postoperative period. “I was in the hospital for ten days and had a quick recovery,” she says. “Now I can say that I am the pioneer patient in the world. I feel very good knowing that I was the first and now this same surgery helps so many girls.”

Three months later she finally had sex with her boyfriend, and current husband, after four years of waiting. “It didn’t bleed and I didn’t feel any pain, it was just a good thing.”

Part of the pioneering team in the procedure, Zenilda Bruno, gynecologist chief of the Medical Division of the Assis Chateaubriand ternity-School, points out that the great advantage of fish surgery is that, in addition to being faster, it is non-invasive and odorless. of fish and has a painless postoperative period.

“Another great benefit is the lack of scarring, this is very important for a woman’s self-esteem.”

Another who agreed to vaginal reconstruction with tilapia was student Tainá Fogaça de Souza, 19, who was 16 years old when she received Rokitansky’s diagnosis.

“After an MRI, I found that I didn’t have a complete birth canal and I had a uterus that hadn’t developed. This explained why doctors only saw my ovaries and didn’t see the uterus on ultrasounds.”

The student says that the diagnosis was a blow. “I was floored,” she says. Tainá says that she initially had a consultation with a doctor who advised her to use vaginal dilators. “But I didn’t adapt.”

That’s when her mother and grandmother started researching and discovered tilapia surgery. “During the consultation with Dr Leonardo, he gave me a lot of confidence and also put me in contact with other patients. I gained a support network that understood exactly what I was going through. It was fundamental in the process.”

Tainá says she has sensitivity in the region of the vaginal canal. “When I do an ultrasound, now I realize what happens.”​

In Minas Gerais, two women were operated on with tilapia skin at the end of 2021 at the Hospital das Clínicas da UFMG/Ebserh, which will receive other patients in the state with the same diagnosis and undergoing treatment at SUS.

According to the Minas Gerais public hospital, Rokitansky syndrome is a disease that affects 1 in 5,000 live births.

The surgery is still in the research phase and is only performed and paid for by the SUS in patients participating in the study. The referral can be made by any health unit in the country. The Ministry of Health reported that, as it is experimental, the procedure is not yet incorporated into its official list.

understand the surgery

when is indicated

  • For the reconstruction of the vaginal canal of patients with Rokitansky syndrome

How is the procedure

  • Space is opened between the vagina and the rectum, lining it with tilapia skin
  • By having type 1 collagen, tilapia skin becomes as resistant as human
  • A vagina-shaped mold is then placed in this space to prevent the walls of the “new vagina” from sticking together.
  • Meanwhile, the patient’s tissue cells and growth factors are released by the tilapia skin.
  • Thus, a new tissue appears with cells similar to those of a real vagina.

Sources: Leonardo Bezerra and Zenilda Bruno, from the Federal University of Ceará, and Faculty of Medicine, Federal University of Minas Gerais

The dermatologist and co-founder of the Roki Institute Claudia Melotti, 51, was also diagnosed with Rokitansky, as an adult, and opted for treatment with dilators only.

“In addition to being efficient, they have results in two months, it’s a much cheaper treatment. A kit costs an average of R$ 100. I used it and it was enough, without surgery.”

According to gynecologist Claudia Takano, coordinator of the Outpatient Clinic for Genital Malformations at Unifesp, there is a consensus among experts that the first line of treatment should be vaginal dilation, not surgery.

“It’s safe, has low cost, low risk and high success rates, around 90% to 96%, similar to surgery”, he says.

Zenilda explains that the surgery is indicated in cases of patients with a vaginal canal smaller than three centimeters (the normal is 10 cm). “Then it is not possible to open the canal only with dilators.”

Takano explains that women who have preserved ovaries can freeze eggs and generate a child with the help of surrogacy, or even undergo a uterus transplant, used exclusively for management and then removed.

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