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A Woman Who Was Born Without A Vagina Or Uterus. Millions Are Silent About This Problem!

There are many different defects and illnesses that can affect a person. A large part of them is commonly known to us, but others, are so rare that they may even shock. There are even cases so unique that they are the only ones in the world. What about a woman who was born with one kidney, no uterus, or vagina? Well, her case is not so isolated! She heard about the fact that her reproductive system did not develop at the age of 17. In fact, she found out that she had MRKH syndrome completely by accident, as she had not previously suspected that she might be different from her peers and other women. It wasn't until twelve years later, in an interview with the BBC's Anne Ngugi, that she told her story. Young Julian Peter had to accept a lot, including the fact that she would never have children of her own. What was the journey she went through and why did she initially not want to opt for vaginal reconstructions? What are her intimate issues like and why did she choose to speak publicly about the day she discovered she was born without a vagina?

She had no idea she was different

Originally from Kenya, Julian Peter found out she had MRKH syndrome by accident. She was a 17-year-old schoolgirl when she went to the hospital for a medical consultation because of a problem with swollen legs. As she recalls, the first thing the doctor asked her about was her last period. And she had never had one. And so, the doctor's routine question about menstruation set Julian on a path that eventually led to the discovery that she was born without a uterus, cervix, or vagina...she had no idea before, no idea that her body wasn't like other girls.

She had no idea she was different

Shocking diagnosis

When she had tests done, the first scan image showed that her reproductive system was closed from the outside. In order to open it, she then underwent surgery, which was unsuccessful. Then the tests were expanded and another scan of her internal organs showed that the problem was bigger and the girl had neither uterus nor vagina. A shocking diagnosis was made, she was told she had MRKH syndrome. As she confessed, the day she learned of what had happened to her, she was completely distraught.

Shocking diagnosis

What is the MRKH team?

Expanding the acronym, it is Mayer-Rokitansky-Küster-Hauser syndrome, a syndrome of defects occurring in women, characterized by congenital absence or underdevelopment of the vagina and uterus, absence of menstruation, and infertility. Other sexual characteristics are well developed in such cases (mammary glands develop normally, normal female hair is present). Although surprising, this condition is not uncommon. MRKH affects one in 4,500 women and in most cases doesn't cause symptoms until puberty. Only when the first bleeding does not appear for a long time or, for example, young girls start their first intimate adventures and encounter a problem with sexual intercourse, they start looking for the cause. The first follow-up visit to the gynecologist does not always detect MRKH. According to statistics and stories of women who dared to speak out about their experiences, in a significant number of cases they had to wait a long time for a proper diagnosis, often changing doctors on the way of treatment. What were Julian Peter's experiences when she found out about the defect that had happened to her?

What is the MRKH team?

She didn't want surgery

As Julian recounted, after receiving the diagnosis, she cried the first day, the second day, and the third day, but then she moved on. Recalling those days, she confessed that she was only 17 and still very young, so her priority was to go back to school so she could finish her education. She did not want to undergo surgery at that point; she was not ready for it. It took a long time for her to mature into this decision. It wasn't until ten years later, now an adult, that the 27-year-old woman returned to the hospital and had successful surgery. There are several ways to treat people with MRKH syndrome, depending on the type of defect. One way is to reconstruct the vagina - either surgically or with special dilators. Some women have a vaginal diverticulum and in such cases, there is a good chance of stretching the vaginal walls with dilators. Often, surgery is the only option. And so, the type of MRKH that Julian had meant that she had no vagina, no uterus, and only one kidney. Her vaginal canal was not there at all, so one had to be created.

I don't care what other people say

As she revealed, people have different feelings about what she faced and who she is. Someone once told her that she should go somewhere to pray about it. On the other hand, another person said that because the Kenyan woman is from Ukambani (a region that is stereotypically associated with witchcraft), her grandmother had something to do with it. However, the 29-year-old knows her values and insists that people can say whatever they want because what really matters is how she perceives it. And she explains that if she listened to them, it would start affecting her badly and she would start thinking that what they say is true. As she also added, when she studied biology, she understood what the doctor was saying to her the first time.

Consequences of the illness

Julian says that her life is normal because MRKH does not interfere with how she wants to live. However, she makes no secret of the fact that some find it emotionally disturbing and there are people who may need to go to a psychologist to accept this condition. She herself has reached a stage where she does not feel bad about it. However, she has had to realize the consequences of her illness and has had to come to terms with the fact that she will never have children. As she explained, she had repeated tests and x-rays several times. Her ovaries were not found, so it is not even possible to retrieve ova from her for in vitro fertilization. This also means that there is no way she can even enlist the help of a surrogate to deliver Julian's biological child. The lifelong approach of the now 30-year-old Peter says that you have to accept what you are. She added that with MRKH, the process of realizing that you are not like other women is difficult and you need someone to talk to about it. "I have met many people here in Kenya with this disease and we share our experiences. I accepted my condition early on and accepted myself, so I'm okay."

She didn't want surgery

She was in a relationship

In an interview, she admitted that she has been in relationships. What do relationships look like for a person with MRKH syndrome? The 29-year-old stressed that she doesn't let things get too far before sitting down with the person first and letting them know about her condition. "If they want to accept it, they will accept it. But you know, human beings are just human beings ... A large percentage of the people I've told about it have walked away. Others accuse me of lying, they think I'm saying this to chase them away." She also added that she is not in a relationship with anyone at the moment, but it's all a matter of God.

I don't care what other people say

Having sex

Sexuality in MRKH syndrome raises a lot of emotions. Logic suggests that since there are no reproductive organs, there is no sexual intercourse. However, this is not the case, as pleasure from intimacy with a partner can be enjoyed in a variety of ways. Not every woman affected by MRKH needs or wants vaginal dilatation to derive satisfaction from intimacy. The Kenyan woman touched on the topic of intimacy and told how it is in her case. In an interview with BBC in 2020, she confessed that when it comes to having sex, it has been just over a year since her vaginal reconstruction surgery and she is not ready for sex. She added at that time that she is also not ready for marriage and brought up the topic of offspring. From her words, it seems that if there is a person in her life with whom she plans to have a future together and if they wanted children, they could adopt them. Given that several months have passed since this conversation, perhaps, the now 30-year-old Julian is currently developing her emotional life with someone special, with whom she discovers the pleasure of sex. However, we were unable to find an update on that.

Consequences of the illness

She shared her story to raise awareness

As she confessed, it took her at least 10 years before she decided to share her story with the public. She gave the interview 12 years after her diagnosis. Why did she decide to share her story with the world? As she confessed, there are people who do not understand what MRKH is and she wants to raise awareness. Recalling past events, she said: "I was in the hospital with my mother, my only parent, and the diagnosis shocked her. I think as a parent there were questions she had to ask herself. Basically, she wondered if she had done something wrong." Today, as an informed adult, she primarily wants to advise parents who have children with this condition not to accept surgery when the child is young. Let it happen when they grow up, when they can understand it because the procedure is complicated and long, the diagnosis itself and coming to terms with it is also painful. That's why Julian encourages that if you're a parent, you should broaden your knowledge on the subject to the extent that you can help your child deal with the stigma they will face when they hear the diagnosis of MRKH. As she revealed, she has her own support group, where people listen and help each other because it's important to help each other because this journey can be difficult.

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