- "Name a negative feeling and I had it at that moment and they still haunt me to this day. I knew I had to make a choice, and whatever choice I made, I was on my own."
I was born without a womb and started menopause the moment my menstruation stopped, at age 18.
Some two years ago, on July 24, 2013, my story began.
I had visited the doctor for consultation regarding my irregular menstruation only to end up in tears. After getting a pelvic ultrasound my results came back reading: uterus is atrophic, ovaries are not visualised, urinary bladder normal. Conclusion: atrophic uterus. Mullerian agenesis.
I will give you a minute to Google – or try to find a medical dictionary. Simply put, I was born without a womb and with a short cervical canal. And to cap it all, I was already five years into menopause. The menopause, as I came to learn, explained the mood swings, depression, heat waves and anxiety.
At age 23, I had just discovered I was menopausal, barren and had a shorter than normal vaginal canal.
The day was not done with me yet. My aunt, my best friend and I left the doctor’s office and headed for lunch where we were meeting my mother’s sisters for a “serious talk”.
The summoning was for me to explain why I had recently turned into the family’s black sheep. At least the results partly explained my strange behaviour.
We sat down and ordered our meals. The food was brought and the conversation began. My medical results were put on the table and my best friend and aunt broke it down for the rest. I will never forget the moment. One of them took the envelope with the results, put it aside and said: “This is not important.”
From that moment I knew I was alone in this and I now use that restaurant as one of my motivators as it reminds me of that sunny day in July.
It is true that people will forget what you did or what you said but they will never forget how you made them feel. I cannot remember their exact words during that lunch or what they did but I will never forget the feeling – loneliness, betrayal, anger, fear that literally crippled me, confusion and sadness.
Name a negative feeling and I had it at that moment and they still haunt me to this day. I knew I had to make a choice, and whatever choice I made, I was on my own.
First, I had to wrap my head around my diagnosis. This is still a journey for me.
I did accept what was written on the paper; I will live with it. The living is the hardest part – getting the heat waves and remembering what they are, having mood swings and understanding what the cause is and learning my triggers. This journey could not be walked alone.
One day, I decided to seek counselling. I found solace online where I encountered other women who have been diagnosed with the same condition and there we began supporting each other, talking to each other and walking this journey together.
We were hosted by an American organisation that seeks to raise awareness on Mullerian agenesis or Mayer Rokitansky Kuster Hauser syndrome (MRKH). This platform was home for us.
I could not find any organisation that spoke openly about MRKH syndrome in Kenya or Africa, thus the birth of MRKH Africa Foundation.
Before it became a fully-fledged organisation, it was just an idea in my head. It was a need – I needed someone to tell me more about my condition, to walk the journey with me and to tell Kenya, Africa and the world about it so that it is not always hard for me to speak about it.
I needed someone to fight for me. The need turned out to be my job, my story and my happy ending.
In 2014, the idea started to take shape on paper. I knew there were other girls who needed such a place; I had met them and spoken to them.
It took almost a year but eventually MRKH Africa Foundation was formed to provide a network for men and women, girls and boys who have had to sit through a diagnosis like mine.
We also raise awareness on MRKH syndrome, infertility, adoption, surrogacy and fight the stigma that surrounds all these.
My situation still has not changed. I am still barren. Now at 25 years, I do not fit in with my age mates and I do not fit in with older women who have begun their menopause at age 45 and above.
But I want to make a difference. I want to turn my pain and misfortune into a stepping stone for many other people.
Email: [email protected]
What Is MRKH?
MRKH (Mayer Rokitansky Küster Hauser) syndrome is a congenital (born with) abnormality, characterised by the absence of the vagina, cervix and the uterus (womb), which affects one in every 5,000 women. It is also associated with kidney, bone and hearing difficulties.
Reproductive abnormalities are due to incomplete development of the Müllerian duct. This structure in the embryo develops into the uterus, fallopian tubes, cervix, and the upper part of the vagina.The ovaries are usually present and function in the same way as any other woman’s by producing eggs and female hormones that keep you healthy. Chromosomes are the normal 46xx female karyotype.
How will I know if I have this condition?
Women usually discover that they have no vagina, cervix or uterus during puberty. Although they develop breasts and pubic hair, they do not start having periods. This is because the ovaries produce the female hormones that make normal development occur, but the absence of the vagina and uterus mean that there is no period. However, some women may have found out because they had difficulties with sexual intercourse.
The cause of MRKH syndrome is unknown, although it probably results from a combination of genetic and environmental factors. Researchers have not identified any genes associated with the syndrome.
What tests will I have?
An examination is best done by a gynaecologist. The doctor may refer you for further investigations, which may include a blood test to check your chromosomes and exclude any other genetic abnormalities and an ultrasound scan or MRI scan to confirm the absence of the vagina, uterus and cervix and the presence of ovaries.
As women with this condition also have a 40 per cent chance of having differences in the development of their kidney and urinary tract (for example 15 per cent have only one kidney), a renal scan or X-ray of this area may also be recommended. Up to 10 per cent of women with MRKH may experience some hearing difficulties and another 10 per cent may have bone changes.
Will I need to have cervical smear tests?
No. As you do not have a uterus or cervix, you will not need to have any cervical smear tests or HPV1 vaccinations.
Will I be able to have children?
As you were born without a vagina, cervix and womb, you will not be able to get pregnant or carry your baby. However, your eggs can be removed and fertilised by your partner’s sperm and then placed in a surrogate mother’s uterus.
Refinements in surgical techniques, such as the Vecchietti and McIndoe procedures, have enabled many women with müllerian duct anomalies to have normal sexual relations.
Is it normal to feel angry and depressed?
Yes. Most women and their parents find this condition difficult to accept at first and express feelings of shock, anger, depression, isolation and rejection. Many parents also feel guilty.