She went viral on TikTok after talking about how she discovered her condition. In an interview with Tec Review, Daira and her doctors explain the details and challenges.
“How did I find out that I didn’t have a vagina? I was having an ultrasound, and several doctors came in and went out. The intern was crying. I imagined the worst, the idea that I was going to die at 16 terrified me. The woman in charge arrived and told me she had some bad news. They couldn’t find a uterus, fallopian tubes, or anything,” explains Daira Saulés Fuerte.
After several tests, Daira Saulés was diagnosed with Mayer-Rokitansky-Küster-Hauser syndrome (MRKH), a congenital malformation in which the inner part of the female reproductive system, the vagina, does not develop.
It’s a rare condition that occurs in one out of every 4,500 girls, according to the Orphanet website, which specializes in rare diseases and orphan drugs.
Daira had gone for the ultrasound to answer some questions about why she had not been able to have sex. Her story went viral when she talked about it on TikTok.
It was 2013, and Daira had tried to have sex without success. “Penetration wasn’t possible, there was a barrier. We searched on the internet to find out why it could be closed. We thought it was vaginismus and I thought that going to the psychologist would be enough,” she says.
The young woman had never menstruated, but she thought it was normal because she was diagnosed with diabetes when she was four years old. Since then, she had been told that the disease could be related to some menstrual cycle disorders.
Looking for answers, she visited an endocrinologist, who ordered a chest x-ray to rule out another problem. That’s how she ended up having the ultrasound that changed her life on May 14, 2015.
Her parents were the first to talk about solutions to the syndrome after Daira plucked up the courage to tell them what had happened.
“I very clearly remember my dad saying to me that if they could build a vagina for transgender people, then they could build one for me too.”
After several medical tests, including a tomography, and being diagnosed with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome, the procedures to do so began at Mexico’s General Hospital (HGM for its initials in Spanish).
What is the genetic failure that causes this condition? The formation of male and female genitalia occurs through different structures; the external part depends on a layer of the embryo called the ectoderm and the internal part depends on some ducts called the Müllerian and Wolffian ducts.
At some point in embryonic development, something goes wrong with the ducts that are responsible for internal formation. “These patients fully develop the external part —the vulva—, but only develop a third of the interior of the vagina, to an average depth of 1.5 to 2 cm,” explains Raymundo Priego Blancas, the plastic surgeon specializing in reconstructive microsurgery who was in charge of Daira’s procedures at HGM.
This syndrome is characterized by the lack of development of the uterus, the middle, and the end of the vagina, but the external part and all the feminine characteristics have normal development.
Patients with this condition seek help due to the absence or impossibility of sexual intercourse, as was the case for Daria.
Daira entered the operating room at six a.m. on November 15, 2015. Her operation was scheduled to finish at eight, but something went wrong, and she spent nine hours in surgery.
The surgical procedure consists of creating a vaginal canal in a space where there is none.
When there is no vagina or internal genitalia, the rectum and bladder are stuck together. “It’s a very complicated procedure with a lot of bleeding. We have to be very precise so as not to injure or perforate the bladder, rectum, or hemorrhoidal veins,” explains Raymundo Priego.
In Daira’s case, there were none of those complications, but the plan changed. Initially, the labia minora had been selected to create the vagina. However, the tissue wasn’t large enough, so an emergency meeting with all the specialists was held to devise another procedure in record time.
“Finally, we chose to use skin grafts for the new vagina using the gracilis muscle from the inner part of the thigh,” explains Anabel Villanueva Martínez, a plastic surgeon and reconstructive microsurgery specialist who was on Daira’s operation team.
Skin grafts are patches of the patient’s own healthy skin and tissue that are removed from one area of the body and transplanted to another area that needs it. It’s called an autotransplant.
“The body is so wonderful that this graft adapts and starts to function as expected in the space it’s placed in. This is how a thigh muscle can become a vagina. But it takes time. Dilators are required to gently stretch the inside of the vagina in order to maintain the depth,” explains Anabel Villanueva.
This muscle was chosen because of its proximity to the genital area. The dissection process must be perfect to ensure that it is as intact as possible; these tissues are passed through a tunnel and introduced into the pelvic cavity to line a gauze-filled condom that will become the new vagina.
First, surgeons enter through the vaginal opening and make space for the new cavity. They take the two muscle grafts, unfold them and shape the vagina. They then enter through the abdomen and pull to secure the two grafts.
For the first 12 weeks, the skin doesn’t show any changes, but being in a moist cavity with secretions, it changes, protects itself, adapts, and looks more and more like mucous membranes. “After a few months, it’s impossible to tell the difference between vaginal tissue and graft,” says Raymundo Priego.
Vaginal reconstruction has been practiced in Mexico for at least 30 years. There are now new techniques, such as the use of a segment of the intestine, but this varies from patient to patient.
“The worst and most painful days of my life were after the surgery,” recalls Daira. The specialists explain that she had many incisions, and she could not open her legs to walk. “We created a space where there was none, we removed two muscles from her thighs, unfolded them, and shaped a vagina, all of which made it very painful,” explains Raymundo Priego.
The TikToker spent a month in hospital. She was admitted weighing 70 kilograms (kg) and left weighing 40 kg. “I was very traumatized by my scars, I felt like Chucky.”
“The incisions are made in strategic areas, so it won’t affect the flexion of the leg, guaranteeing 100% mobility for the patient. It isn’t invisible, but it’s discreet. We make it as aesthetic and functional as possible,” explains Annabelle Villanueva.
The month that Daira was hospitalized was difficult. Among other things, her diabetes hindered the healing processes. She lost 30% of the graft.
Daira left the hospital at Christmas without enough psychological support. “There were two interns who didn’t help me much. I was crying all the time. I felt like I had lost a month of my life and I didn’t feel pretty,” says Daira.
Any diagnosis needs psychological support, even more so when a part of your anatomy is altered.
“The age at which you receive the news and how you take it are a big factor. A condition like this includes the repercussions of the impossibility of having a sex life or being a mother.” The plastic surgeon has seen this in many cases and recommends a multidisciplinary team in which a psychiatrist is essential.
Daira went through a long dilation process to expand her vagina to a functional size. These devices are personalized and made by a specialized prosthetist.
She had scars, discomfort, and a toxic relationship. “The only support I received to alleviate my depression was from my family.”
Daira got a tattoo of the word beautiful to remember her beauty. “I went through a process of accepting myself. Now, I love my scars and everything I went through. I even fondly remember my only menstruation, which was my recovery bleed, and I feel complete.”
Once she had overcome the entire process, the doctors excitedly prescribed daily sex. “They thought I was going to be very happy, but I was terrified. I was still bleeding, I didn’t feel safe despite a thousand doctors and interns having seen my vagina,” she says.
Now, Daira has a normal sex life, “I don’t know how women with natural vaginas feel orgasms, but I feel mine, I feel pleasure and I feel complete,” she says.
Now 26, she faces a new challenge, the biological impossibility of being a mother. She has no uterus nor ovaries.
“The surgery was designed so that the patient can have an active sexual life, without problems, pain, or discomfort. Reproduction is not possible yet, but science is advancing rapidly,” says Raymundo Priego.
Daira has looked for other options for motherhood such as adoption, but she doesn’t rule out that science will give her the pleasure of being a mother one day. “I know that no matter how much I want it, my ovaries are not going to grow. But I do follow the advances in uterus transplants. One day, it will be possible,” she says.