People diagnosed with Mullerian Agenesis have no vagina, cervix and uterus
Majority of women globally dream of getting married and having a family. However, a group of women suffering from a very rare condition may not be able to fulfill that dream of carrying a baby to term, be it naturally or through a scientific procedure.
Some 60km in the outskirts of Nairobi, I meet 23-year-old Gladys Mwangi (not her real name) whose dream of conceiving a baby will be nothing more than just that — a dream. She will never experience what it feels like to have someone grow inside her for a period of nine months.
Before we sat down to conduct the interview she was a bit nervous because she has never told “a stranger” about her life and what she is going through.
I had to assure her that I wouldn’t perceive that she was bewitched as is the case in many communities both in Africa.
By the time Gladys turned 17, she noticed something strange about her transformation from a girl to a woman. She never had her menses. She then went to a local dispensary in Thika. The nurse, who attended to her, told her that she has nothing to worry about and assured her that she will have her menses before she turns 18.
However in her first year in college, there were no signs that she was going to have her menses. She adds that throughout her life in high school and college she bought sanitary towels and waited for her menses to start like a farmer who is waiting for the rainy season so that his crops won’t die.
“Each time I did my shopping, I would buy sanitary towels and put them in my box and locker and wait for the day that I would actually “feel” like a woman. I wanted to know what it feels like to wear a sanitary towel and experience what my friends go through during that time of the month,” said Gladys.
Having not seen her periods by the time she was 20, she booked an appointment with a gynaecologist. She travelled all the way to Eldoret, because she was told that a gynaecologist who practises at Moi Teaching and Referral Hospital would be able to explain what is wrong with her.
On the D-Day, she had to do Pelvic Ultra Sound. The results showed that she had Mullerian Agenesis. She was also told that she has no vagina, no cervix and no uterus.
She says she sat with the doctor for two hours so that he could explain to her what it means to have this condition.
“It was just a rude shock. I didn’t have the slightest idea what I was going to do because all I ever wanted was to give birth to a child,” Gladys says.
“Who would want to marry a woman who can’t give birth, to make matters worse someone who has no vagina,” she says.
Gladys has a very short vagina (2cm), no uterus, and no cervix. The condition is not common but there are a lot of women like Gladys who are out there but are too afraid to come out share their story.
Months after she got her results, one man was interested in her. However, when she told him about her condition, she didn’t expect “such horrible words” to come out of the man’s mouth.
“That man asked me how many times I had an abortion because I didn’t have a uterus.”
From that moment on, she vowed not to tell anyone about her condition because people would never understand her. The only people who knew about her condition were her mother, brother and her best friend. After one year, her best friend fell in love with her despite knowing that she wouldn’t be able to give him children.
In the African setting, a family is not complete without a child or children. Infertility causes great worry and sorrow to many couples especially for women and Gladys can attest to this.
Her best friend, Paul Mwangi, proposed to her after dating for a year. They stayed together for two years and that is when she was pressured to have a child by her in-laws.
Everyone kept asking her why she hasn’t given birth two years later. The pressure was so real that she decided to tell her in-laws the reason they don’t have grandchildren.
“When I told them about my condition, my mother-in-law just told my husband to marry another woman who can give them a grandchild,” Gladys says.
“I just told my husband if he wanted to divorce me because I can’t give him children, I have no problem because I have no choice. I can’t give birth and to make matters worse I don’t have a uterus, cervix and a vagina,” Gladys says.
Women who are infertile and are married tend to have a rough life because they are portrayed as cursed people. Even though Gladys and her husband never talked about her condition, she says he supports her in everything she does.
Apart from missing the uterus, cervix and vagina, women with this condition also have a difficult time having sexual intercourse because of the size of their vagina.
“Each time my husband and I have sex it’s always painful. My vagina is only 2cm long. But I’m happy that he understands my condition,” she says.
Gladys, who is studying beauty at Uzuri College, says a number of her friends who have the same condition have a hard time in their marriage, some being beaten by their husbands.
“I am lucky that my husband has never laid his hands on me. Even though my condition is never up for discussion, I am grateful that he supports me and stands by me every day. We are even starting the adoption process next year so that by the time I am done with my education I already have my first child,” she says.
Rachel Kimani is another lady with the condition. The first thing the third year law student at the University of Nairobi asked me when we met is to describe “what it feels like to have sex.” This is because she has been having painful sex with her boyfriend before they broke up, in December last year.
I was a bit baffled by her question as no one tends to talk about sex as the first thing when conducting an interview.
“Yes, I want to know because sometimes when I had sex with my ex it was very painful and sometimes it wasn’t,” Rachel says.
Rachel was diagnosed with Mullerian Agenesis in 2013. In her medical report, the doctor’s indicated that she had no cervix, uterus and her vagina was 1cm long.
“When my friends complain about having cramps during that time of the month, I just look at them and tell them I wish it was me,” Rachel says.
“This might sound weird but when I was in high school, I used to wear sanitary towels hoping that I would have my menses, but nothing. The sad thing about having this condition is that I can’t give birth. Why would someone want to marry a woman like me?” Rachel poses.
Majority of women who have this condition tend to have low self esteem because they can’t have children.
About Müllerian Agenesis
Müllerian Agenesis, also known as Mayer-Rokitansky-Künster-Hauser syndrome (MRKH), was named after the four German doctors who discovered it.
It is a congenital malformation where a woman would be missing her uterus and variable malformations of the upper part of the vagina. Women with this condition would either have a short vagina, an under- developed uterus and cervix or no vagina, no uterus or no cervix.
Gynaecologist registrar Nicholas Muasya, who practices at Kenyatta National Hospital, says women with this condition may not know that they have it until they are about 17 years old. This is because at that age one will be able to tell if they have had their menses or not.
“When a gynaecologist confirms that a lady has this condition, it is always good for the doctor and bad for the patient. These are conditions that we read about in class and because it is very rare you would not expect to find a patient with it,” Dr Muasya says.
Dr Muasya, who has seen more than five patients with this condition, says majority of the patients didn’t know that they had it until they were 40, some of who have been divorced twice.
The doctor says most women with Mullerian Agenesis have very short vaginas because their sexual organs were not formed at the time of puberty.
“The normal size of a woman’s vagina is between 7cm and 9cm. However these women usually have no vagina or theirs is very short,” says Dr Muasya
He says although there is no treatment for this condition, women who have it need a lot of psychosocial support from family members and friends so that they can boost their self esteem. He adds that surgery is an option.
“Yes. Surgery is an option. However, it has not been tried in Kenya. If one opts to have a surgery done to elongate their uterus, doctors would have to elongate her small intestine and create a vagina. But the patient should know that it will not in anyway help them to give birth,” Muasya says.
“The patient can also try to dilate her vagina with her partner. This will also help in expanding the vagina but it takes quite a long time,” he says.
Rachel Kimani says she tried this method with her ex and it did work, as she never had painful sex with while she was dating.
Both her and Gladys Mwangi have opted not to have any procedure done to elongate their vagina but live life the way they are.
The two usually receive psychosocial support from the founder of an organisation known as MRKH Africa Foundation, that deals with this type of condition.
MRKH affects one in every 5000 women globally. It has however not been proven if it is hereditary.
Women who have Mullerian Agenesis hope that one day the government will be able to have a department in the Health ministry that deals with rare conditions.
“This will actually help a lot of women and men out there especially in rural areas, where they don’t have access to information fast enough,” says Rachel.
“Apart from creating a department they should call on women to see a gynaecologist if they realise that they have not had their menses,” Gladys adds.
MRKH Africa Foundation raises awareness on rare condition
Joanneva Wanjiru, 23, founded the MRKH Africa Foundation in 2014, a year after she was diagnosed with Müllerian Agenesis. Joanneva says her life changed after she got the news.
“I started having my menopausal period at the age of 19. I was always moody, tired and rebellious,” says Joan.
“I had to drop out of school because it was very hard concentrating in class and I didn’t know what was happening to me. When I found out what was wrong is when I vowed to help other people live their lives normally.”
Joan, who is the only girl in a family of three, says she never had it easy because her mum and aunts did not want to talk about her condition.
“When I told them about my condition they said that it wasn’t important as school. Yes, school was important but they would not let me finish explaining myself. And that’s when I knew I am on my own.”
Joan then started researching if there is a cure for the condition and found that there are several ways to manage it.
“Of the options, I chose to receive counseling sessions at least three times a week. l will not opt to have my vagina elongated but rather go for the dilatus procedure where I’ll be doing it with my partner,” says Joan.
After a year, she registered the organisation with the aim of not only raising awareness on MRKH but to also provide a network of support for people with the condition in Kenya and Africa. With no source of income, she sought help from her friends and other donors to help her meet the expenses to register the organisation.
“In the organisation we treat each other like sisters; we are each other’s keeper because we understand what we go through in our day to day lives,” says Joan.
“So far we have about 100 members not only in Kenya but other African countries. Most of them have been stigmatised by their families.”
Joan says the government needs to create awareness on rare conditions that affect both men and women so that they are not ostracized by the community.
This way they can tell if something is wrong with their reproductive organs.
