Born without a womb: What You Need To Know About MRKH in Malaysia

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By 17, most girls would have started menstruating.

If you have never had your period by this age and you think that this is normal, it is not.

If you are scared and confused, and you think that you are the only one with this condition, you are not.

It has a name. It is called Mayer-Rokitansky-Küster-Hauser Syndrome, or MRKH for short. And thanks to Nur Syazwani Abdul Rahim, or Wani Ardy, there is a growing awareness in Malaysia that some women are born without a womb.

What is MRKH?

Differences between a typical and a woman with MRKH. Source: Buzzfeed

MRKH Syndrome is a condition that affects 1 in 5,000 female babies worldwide. The cause of the condition is yet unknown. However, at some point during the baby’s development in her mother’s womb, the reproductive system does not develop fully.

Girls with MRKH are often diagnosed in their teens. This is because babies with MRKH have a normal outward appearance. However, their womb (uterus) is very small, if not missing completely. The same could be said about their vaginal canal. In some cases, girls with MRKH may even miss a kidney, suffer from hearing loss, heart, hand or limb, and skeletal defects.

Wani Ardy and MRKH

I knew Wani Ardy as a singer and a writer; a woman who is passionate about the literary scene. Like most Malaysians, I was completely unaware of MRKH until Wani informed me of her condition. It is rare enough in Malaysia that it is included in Malaysian Rare Disorders Society.

Wani Ardy, 35, is a poet and singer-songwriter. Seen here representing Malaysia for her dance poetry piece at the Makassar International Writers Festival 2019.

However, with her advocacy work in raising awareness about the condition, more women are now reaching out to her after they are diagnosed with the syndrome. I decided to meet with Wani to learn more about the MRKH syndrome and her own journey with the condition.

Wani Ardy’s Road to Diagnosis

It all began in 2001 when her concerned aunt raised red flags and prompted her own mother to seek advice from a doctor. By then, Wani had noticed the differences between herself and her friends.

“I started to notice that I was different from most of my friends when we were in the changing room for our PE class in school. Most of them have hit puberty and their bodies were developed, whereas I still looked like a girl. I didn’t get my period yet. I realised then that I was different, and that something was not right.”

She met with many doctors and most were stumped by her condition. Ultrasound scans showed that she does not have a uterus. Back then, doctors could not put a name to the symptoms.

It was left to Wani to search for her own answers, based on the test results from her doctors. Her internet search led her to Christina Ruth, the founder of Beautiful You MRKH Foundation, the first MRKH support group based in the U.S. They began to communicate. That was in 2013.

MRKH Malaysia has been supporting women with the condition since 2015.

The Birth of MRKH Malaysia

In 2015, Wani Ardy decided to start her own Malaysian support group for MRKH women. “I was doing a lot of research by then and saw that most Western countries had these support groups and there were none in Malaysia.”

These groups were mostly discussing issues related to body and self-confidence. However, Wani realised that Asian women with MRKH were dealing with issues that went beyond physical appearances, such as broken marriages, social isolation and cultural stigma. These coupled with the more inhibited nature of Asians made her feel that a support group catering to Asian women was sorely needed.

“I think it is also the fact that Asian women put so much importance on the idea of marriage and motherhood – becoming a wife and a mother. This MRKH is a definite curveball.”

MRKH Malaysia as a Support Group

When she first started MRKH Malaysia, the group had only 3 members, including herself. The other 2 members sought her out after they saw her discussing her own issues with MRKH on a local television programme. One of them approached her after a performance.

Wani talking about MRKH on Malaysia Hari Ini.

“All this while, my exposure to other MRKH women was only through Skype. To meet, talk and hug another MRKH woman face to face was surreal. We both cried.” This is why Wani Ardy firmly believes in spreading awareness and speaking out.

To date, MRKH Malaysia has 85 members, with many applications yet to be vetted by Wani. The group serves as a support system for MRKH women and a topic that is most often discussed is motherhood.

MRKH and Motherhood

Wani is adamant that women with MRKH are not considered as victims, and that they can lead a life like most women- as a wife and a mother. Wani herself is a mother to a 7-year-old son, whom she raised from birth. She also provides information and support to members when it comes to dealing with the social, physical and emotional repercussions from having MRKH.

Wani Ardy and her husband.

When I ended the interview I was blown away by her tenacious spirit of advocacy and the positive spin she puts on MRKH women in Malaysia.

“I want MRKH women to know that they are not subjected to live a lonely life, or being an outcast, because of it. In the earlier days, that was the only option. Now, we have alternatives, and ways to improve our quality of life.”

What Wani Ardy Wants You to Know:

How would I know if I have MRKH? What are the symptoms?

The biggest sign that you might have MRKH is when you have never experienced menstruation by the time you are 17 years old. If your period is irregular, or you have stopped having your menses for a year or so, you are not an MRKH woman.  A woman with MRKH would have never had her period during her pubescent age, until adulthood.

I think I have MRKH, what should I do next?

Book an appointment with an obstetrics and gynaecology (OB-GYN) specialist and express your concerns over your MRKH symptoms. If possible, seek consultation from PPUKM as it is the only hospital in Malaysia with MRKH researchers. You can request for an ultrasound and a laparoscopy, a procedure where a camera is inserted vaginally to look for a uterus.

Upon diagnosis, if you are looking for support from other women with the same condition, you could do so with MRKH Malaysia. You will need to provide your medical report to gain admittance to the closed group.

Can I have my own kids?

Currently, there are only 2 options for MRKH women to have their kids biologically. These options are surrogacy and uterine transplant. Unfortunately, surrogacy is not legal in Malaysia, and uterine transplant is not yet available locally. For Muslims, this is partly due to an ongoing discussion between the local government and religious bodies to determine the Islamic Fatwa regarding the transplant procedure.

For most women with MRKH, adoption is a good option.

Will I be able to enjoy sex with my partner?

Any woman could enjoy sexual pleasure. With MRKH, there are 2 options available for sexual intercourse. One is a non- surgical option which is know as dilation therapy. This involves the use of a dilator to gradually form a deeper vaginal opening for the purpose of sexual penetration. The other is a surgical procedure that would create a vagina in MRKH women, known as vaginoplasty.  And yes, with proper plan and treatment, you will be able to have sexual intercourse.

Nadia Nizamudin wears many hats - cyclist, artist, engineer, yogi, writer - but the toughest role so far is mothering her two wonderful girls. She is an advocate for mental health, self-care and also forgiving yourself frequently as you parent.

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