What to expect at your doctor’s appointment with MRKH?

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After having consulted numerous pages, your suspicions about MRKH might solidify. Even though you are scared, you know that you should go see a doctor. And who knows, perhaps it’s not even MRKH. But you haven’t been to the doctor because you are scared. Scared of hearing the words that confirm your suspicions. Scared of what he or she will do to you. Scared of how it will unfold.

I’m not going to pretend that your fears are unjustified. You have good reason to be scared because it is not easy. But that doesn’t mean that you cannot go through this.

To make it a bit easier, here is what your doctor visit will most likely entail.

Your doctor might firstly bombard you with tons of questions. As with any medical visit, try to answer them as honestly and accurately as you can. After that, your gynaecologist may want to look at your outer female organs. In order to diagnose MRKH, he/ she has to check how long your vaginal opening is. This part may be uncomfortable, but it is necessary.

The next important step is to order a pelvic ultrasound and/ or MRI (magnetic resonance imagining) test. These do not hurt but they give the medical team accurate pictures of your internal reproductive organs. You might see that there’s no uterus or perhaps a tiny uterus, called “uterine horn or remnant”. These tests will help determine which type of MRKH you have and show if you have two intact kidneys and ovaries.

Finally, your doctor should make sure to send you to a specialist who knows how to take care of you physically and mentally. Such a specialist will also talk you through the different surgery methods if you decide to have sex.

The teams who operate on MRKH patients are usually very competent and trustworthy. Always make sure that you ask questions and don’t agree to something if it doesn’t feel right to you. At the end of the day, this is your body and you should be given the last word.

After being diagnosed with MRKH

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It is true. You have it on paper. Or maybe your gyneacologist has just confirmed it via phone call. You have MRKH. What now?

-Take your time-
When being diagnosed with MRKH, you should not try to be the strong woman, at least not right from the start. It is normal that you need some time to digest the information.

As with several other types of syndromes, MRKH has an influence on how your life will proceed, at least in regard to what society considers to be a usual unfolding of a woman’s life.

-It is OK to cry-
If you feel the urge to cry, do it. If you want to scream, go ahead. It is important to let your emotions pan out in a natural way (as long as you do not hurt anyone else).

Even if it was not really the case with me, I remember some childhood friends who dreamt of having kids, preferably a boy and a girl. We even discussed cute names that would be lovely as toddlers as well as adults. These were the girls who wanted a doll to look after for their birthdays, and who, by the age of sixteen, knew all the names of Brangelina’s kids.

No matter what your dreams may be, the diagnosis often causes the breakdown of young women’s dreams. Therefore, it is natural that you need your time to digest the information.

-the internet isn’t always your friend…-

After your visit at the doctor, you might storm the internet to get a better understanding, or to seek confirmation that your diagnosis is right. Please, do not do that. If you are looking for support groups, that might be acceptable, but if you want to gather figures and facts about the syndrome, I advise you to spend limited time on the internet. Why? Because as with news on television, or other media, the internet puts a negative spin on the syndrome. All the newspaper articles I have read are strongly negative and emotionally shattering, and leave you feeling even more down about the syndrome. I am not saying that sadness or anger are misplaced after the diagnosis. What I am saying is that a negative mindset cannot be uplifted with more negativity. (I know this is ironic since this blog is an online source, but I am consciously working against negativity!)

The reception and progression of such a syndrome is a private one, so if there is not a personal negative tidal wave pulling you down, then you certainly should not consider it normal to yield to extreme sadness, or even depression.

– find the right gynaecologist –

Your social support is (in most cases) vital. And you are probably in your teenage years, which does not facilitate the situation. However, bear in mind that even though it might not feel like it, you are in control of things. This is your body, and this makes you the decision maker in the matter. You have a right to decide who you want to talk to. Don’t feel pressured to share it with everyone in your friends’ or family circle. You are in charge.

Make sure that you find a specialised gynaecologist who understands the syndrome, or who can at least send you to someone who is a specialist. If you want to have sexual intercourse, you might probably have to undergo surgery. It is important that your gynaecologist can tell about the different methods and discuss with you which suits you best.

– you are not alone-

You are not alone. At least 1 in 4,500 women is a MRKH patient. There are thousands of women across the globe with the same condition, who go, have gone or will go through the same emotions.
Don’t dwell on feelings of inferiority. That is simply not true. If you break it down, this sense of inferiority is linked to a set of social expectations, which are based on fictional designs. You do not have to bear children and raise a family. Your strength is not defined by this. You are a wonderful woman, even without a uterus. Be it from the outside or the inside, your body does not define you as a human being.

What is MRKH and signs you might have it too

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Picture: Murtaza Saifee

I know it’s difficult to explain what MRKH is- and the full name doesn’t really help with that.
The first important thing to note: MRKH, or in its full glory, Mayer Rokitansky Küster Hauser, is a syndrome and not a disease. It is a genetic disorder that runs through families and can affect girls and women from every other generation. Even if you feel lonely, from a global perspective, the syndrome is fairly frequent; it affects approximately 1 in 4,500 females.

What is MRKH syndrome?

You might have read one or the other article with the sensational headline “girl born without vagina”. I’d like to use the opportunity here to tell these journalists to do their research more thoroughly…. MRKH is much more complex than that!
The most common type (type 1) causes indeed the uterus and the vagina to be underdeveloped or absent. This is, however, mostly invisible from the outside and therefore it may go unnoticed until the girl hits puberty.
Instead, the syndrome affects the internal development of the female reproductive system. That is to say, the vaginal opening may be narrower than usual and/ or the uterus is underdeveloped or absent. Yet, the ovaries are often intact.
If you think back to biology class, you might remember that ovaries are also responsible for the production of female hormones, including oestrogen and progesterone. As soon as we enter puberty, these hormones trigger the growth of pubic hair and breasts. So, since MRKH patients have working ovaries, their bodies develop like those of other girls’- except for one thing.

What are the symptoms of MRKH?

And that one thing is your period. Yes, that’s right. MRKH patients do not get their period- ever. No uterus, no period. Sounds great? Well, yes, I partially agree. But if you think about the organ causing your period, you also know that the uterus will eventually host a tiny egg, which will become an embryo. So no uterus, no period, no child is the complete equation here.
And this pretty much concludes the symptoms. Unless your body shows symptoms of type 2 MRKH, it is pretty difficult to tell from the outside whether you are a MRKH patient. Thus, the only real symptom is when you’re the only girl in your class or friends’ circle to miss out on the monthly red visit.
Now, if you suspect that you might be affected, you should go see your gynecologist. Further diagnosis through ultrasound or MRI will help determine whether you have MRKH or not.

Treatment
If the news has been confirmed and you have MRKH syndrome, please don’t panic.
MRKH is not a lethal disease and believe me, your life will not be limited in any way.
You don’t even have to treat it, however, in some cases this might also restrict your sex life. That is to say, if you want to have sexual relations, it is often advisable to surgically deepen the vaginal opening.
There are plenty of methods to do this, and everyone should choose whatever they think is best for them.
Finally, MRKH does not mean that you have to remain childless. Many women opt for surrogacy or adoption. And thanks to the rapid medical progress, uterus transplantation has become a feasible treatment.

Make sure that you take care of your body and don’t discriminate it. Living a life with MRKH is not a curse, you can shape it into something creative and wonderful that may or may not work against the heteronormative grain. And that’s more than needed.

 

 

 

Why we need a new “Happily ever after”

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Happily ever after– a hyperbolic expression that brings back childhood memories of lasting marriages and other fairy tales. But in all seriousness, it is difficult to understand this phrase detached from its connotations of one happy, heterosexual marriage and its promise of a large offspring.
My mind intuitively links it with the image of Cinderella and her Prince Charming, riding away in their carriage and giving each other a gentle (but never too passionate) kiss on the lips. Children didn’t need to be shown- one simply knew that that carriage would lead them straight to their splendid family life filled with many, many children. They were only one happily-ever-after ride away.

Looking back now, it’s sad that I used to assume that children were the natural effect of a happily ever after. I never even considered a childless happy ending. That’s certainly because this didn’t really bother me as a six-year-old girl. However, would my perception be any different if fairy tales made some room for those carriage rides that no one steers toward childbirth?

Fairy tales do certainly provide some room for infertile couples, yearning for a suitable heir. And yet, in some form or another, these childless couples are always granted their wish. A sparkle of magic or a mysterious woman, hiding parts of her face in a shawl, appears and helps produce a new life into existence. Once the new-born has arrived, the focus quickly shifts to that fresh life, his/ her adventures and own becoming-of-age story. Seldom, or dare I say, never, does the story’s focus linger on that adoptive mother who needs to grasp her own infertility. That woman who tries to understand that her body works differently, and not according to the traditional, customary and oh so fairy-tale-like “plan”.

There’s a dreary shortage of heroines out there whose stories of staying childless have been told. Even if this might not occupy little girls or boys before entering adolescence, it would certainly do no harm to alter their understanding of normalcy. Being a mother or conceiving a child isn’t normal. It’s a wonderful gift which, unfortunately, not all of us get to experience.

My wish is to sit down one day and to read a fairy tale that gives some space to women who find their strength in many other things but being a mother. Whose bodies are NOT defined by the strength of carrying an embryo. Our bodies deserve respect no matter what weight or scars they were marked with. Even though women have been celebrated, hailed and supported more than ever, infertility remains a grey area only a few choose to tackle. It is as if our motherly duty is the heaviest weight to lift. I hope that the years to come allow us to slowly venture down this road, in full pride, without feeling any guilt nor shame when talking about our bodies’ abilites.

At least, that’s where I see my happily ever after.