“When you say ‘Rokitansky-Küster-Hauser syndrome’, (MRKH) they think you are talking about a rare disease; when you explain what it consists of, they take for granted that it is. When you mention that one in five thousand girls is born with this, it’s not so funny anymore. ” Ana is a rokitansky woman, women born with an incomplete uterus, sometimes without it. This is accompanied by a vaginal canal that is not like the one we conceive of. “There is no penis in this.” Ana went through the whole process of finding out, assimilating it, and trying to act. But with a total misinformation. Nobody knows what causes it. There are no studies that say why it happens. And the treatment is, of everything, less comfortable. “Something that happens to one in every five thousand girls born does not seem to me to be a rare disease,” he emphasizes.
The first sign that something is wrong occurs in adolescence. The same pattern is repeated in all of them: The rule does not come. That is usually the reason for the first visit to the gynecologist. “I grew up with my grandmother in Cuba,” explains Dana, “I suffered from menstrual pain, like all my classmates, and we always thought my period was when it fell. I always carried it in my backpack. intimate (tampons, in Cuba) because we really expected it to happen. “When they saw that it never happened, they went to a gynecologist who gave them the news. Another thing is for them to understand.
“In my first exploration,” Carolina says, they believed that my vagina was six centimeters. But they had not measured my vaginal canal but my urethra. “His ordeal really began when, at age 18, he tried to have sex with his partner. They never could. No matter how hard they tried, the penis would not enter.” penis. That’s when I find out that I have a ‘vaginal septum’, that is, an imperforable hymen. I was born without a cavity. She only had a centimeter of vagina. “The medical journey through which they wanted to submit her included grafts made with intestine, buttock or thigh. I refused. That was a total carnage.” The other option they gave him was to have anal sex. Carolina’s head exploded.
“Women with this syndrome do develop secondary sexual characteristics, they grow pubic hair, they have breasts, but they do not bleed because they do not have a uterus or they have it rudimentary,” he explains. Cristina Redondo gynecologist at the Jiménez Díaz Foundation. “They can have menstrual pain. And in their sexuality the penetration is barely existent, because their vaginal canal is a cul-de-sac,” he adds. They will never be able to carry a baby. Rokitansky mothers are adoptive. And it is believed that most of the famous women who have opted for surrogacy are women with this problem, but this disease is not so lucky that women cuquis make it visible. They would give too many clues about their real intimacy.
Our education stipulates that sexuality occurs between a man and a woman and, of course, the penis has a specific function. That is why Carolina, when she refused to undergo the operation, was given the option of having anal sex with her partner. Dana had surgery in Cuba, which made it easier for a humble family to resort to the intervention, very innovative 30 years ago, which is when the surgery was performed. “So you can get married,” said the doctor. They used skin from her abdomen to rebuild a vagina. But the recovery was a horror: three months of vaginal pain, healing and dilations. Every day a condom filled with gauze was inserted into her vagina, trying to mold it to what some believe it was designed to do: to house a penis. Every day they pushed a little more, a little more, a little more. “Said like that, it sounds easy, but it’s terrible,” says Dana. “I don’t remember it being traumatic, but it was very painful.” Other women who have been through the same thing have told me that I have been lucky. That was even more horrible for them. “Dana, like all Rokitansky women who undergo surgery, was recommended to have sex with men as soon as possible” so that ‘it’ would take shape. “
The gynecologist, Cristina Redondo, certifies that a reconstruction only makes sense to receive penetrations. “At the Jiménez Díaz Fund, we don’t do reconstructions. In any case, I work with dilators.” In reality, not all Rokitansky women go through the operation. They don’t even all go through the dilators. Ana is a lesbian, Rokitansky woman. The obligation to have a vaginal canal was never considered, thanks to the fact that her family wanted her to choose with her in mind. No Rokitansky woman reports feeling pleasure after the canal has been rebuilt. “The truth is that I was lucky to never miss it. I have never had sex with men, so when my period did not come and my gynecologist informed me of everything I thought, ‘OK, when I need it’. I thought I’d have sex with men anyway. I’ve never had it. And, right now, if I did, I think I have many other possibilities to have fun without me having the hole in my vagina for him to enjoy. It is not necessary; I assure”.
For Ana, the first woman we met with the syndrome, what is truly necessary is that this situation be made visible, since so many women are going to suffer it: one in every five thousand girls born. “We do not know how to have sex without intercourse. We do not consider more than sex based on male pleasure. We do not know that our daughters can be born that way. 16-year-old girls have the right to know how to act if, at that age, they are diagnosed It can’t be that we don’t know anything about anything. ” Disinformation, as always, is the worst option, but today, Rokitansky women are not on the agenda of any education, not even those related to pregnancy. Shall we talk about them?
Eddie is an Australian news reporter with over 9 years in the industry and has published on Forbes and tech crunch.