A woman who was diagnosed with Mayer-Rokitansky-Küster-Hauser syndrome, a condition where a woman is born with no vaginal, womb and cervix has shared her story with BBC
Kenyan born Julian Peter revealed how she got to know about her condition after a medical check-up as a result of a swollen leg. She was a 17-year-old student at that time.
She said, “I was born with a condition called Mayer-Rokitansky-Küster-Hauser syndrome (MRKH), where you have no womb or vagina, and you can also find yourself with just one kidney.
A woman who has MRKH can never get periods.
I don’t have a uterus, so I’ve never had periods. This is the normal that I know, I don’t feel bad about it.
People have different feelings about who I am. ‘They can say whatever they want’
Someone told me that I should go somewhere to be prayed for.
Another person said that because I come from Ukambani [a region that is stereotypically linked to witchcraft] then my grandmother had something to do with this.
They can say whatever they want to but what really matters is how I take it. If I were to listen to them it would start affecting me, and I would start thinking that what they were saying was true.”
She then went on to narrate how her condition was discovered. A doctor that attended to her at the hospital had asked the last time she had her period. Her response led to a series of scans which led to her full diagnosis.
“I discovered I had the syndrome when I was a 17-year-old school student. I went to the hospital as I had problem with my legs, which were swollen. The first thing the doctor asked me was when I last had my period. I had never had one.
They did a scan. The first image indicated that my reproductive tract was closed from the outside. I went through an operation to open it, which was not successful.
I had another scan that showed I had no uterus or vagina, and that was when I was diagnosed with MRKH.”
Julian and her mother who was the only parent she had were shattered by the news. According to her, she cried for days.
“I cried on the first day and the second day and the third, but then I moved on. I was only 17 and quite small, so my priority was to get back to school.
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 was bound to ask herself, Essentially she was wondering if she had done something wrong.”
She then went on to say she decided she did not want to go through an operation to correct her condition as the only thing she desired was to go back to school to complete her education.
“I didn’t want the operation. As I had studied biology, I understood what the doctor was saying that first time.
I told her that I didn’t want to go through with an operation at that point as I wanted to go back to school to complete my education.
Ten years later, I went back to the hospital and had a successful operation.
The type of MRKH that I had meant that I had no vagina, no womb and I only have one kidney. My vaginal canal was not there and it had to be created.
My life is normal as MRKH does not interfere with how I want to live. But for some, it is emotionally disturbing and people might need to go to a psychologist to accept the condition.
When you realize the implications of the condition that you have, you have to forget about giving birth to children.
I have had four scans and no ovaries were found, so even retrieving eggs for IVF cannot be done.
You must accept the way you are. But realising that you are not like other women is difficult, you need someone who you can talk to.
I’ve met many people here in Kenya with the condition and we share our experiences. I accepted my condition early on and I have accepted myself, so I’m OK.”
She also said explaining her condition to people she has been in a relationship with has been difficult as some could not accept it. Some others, however, felt she only told them to scare them away as such condition is not possible.
“I have been in relationships. But I don’t let things go too far before sitting down with them and letting them know about my 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 have told have gone away. Others accuse me of lying, they think that I am saying it to chase them away. Right now I’m not in a relationship, but it’s all God’s doing.
When it comes to having sex, I had the surgery to reconstruct the vaginal canal in 2018, so it’s just over a year after and I am not ready to have sex.
Neither am I ready to get married. If we wanted to have children we could adopt. It took me at least 10 years to decide to share my story with the public. There are people who do not understand what MRKH is and I want to raise awareness.