Who needs to know about your MRKH?

Even if it’s been more than a decade since I was diagnosed with MRKH, I still find it difficult to decide who I want to reveal my syndrome to.

Being extremely skilled at overthinking, I know that I should probably spend less time on this decision and just tell people if I want to. But, see, it’s not that easy if you have MRKH, let alone if you don’t know how people will react to it… what will they think of me? Is it even worth mentioning? What do people care about my infertility and missing uterus when there are people out there missing a limb? And the worst worry of all: will they use this personal information against me? Will they share it with other people and embarrass me? Is it embarrassing? Will they think any less of me as a woman?

I know how uncomfortable these questions are- but believe me, they are very likely to busy your mind when you have MRKH. Some of them might seem ridiculous or far-fetched, and they certainly are, but it can be difficult to get out of this rut, particularly if you have no one to talk to.

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I think that I have become quite comfortable with sharing my syndrome with people who are interested in it (hence this blog), but at the same time I am still very selective. I decided to compile some of the things that have helped me overcome this internal battle.

  1. Before you tell anyone, take your time. Especially if you’ve just found out about your syndrome. Before you go on Twitter and blurt out to the whole wide world that you’re #infertile #MRKHwarrior, take a moment or two to process it just on your own. You might want to tell someone you’re very close to, such as a parent, sibling, friend or partner. Give yourself time to process it, but also to fully grasp it.
  2. If you are still at school, it might be difficult to hide it from your classmates and teacher. At least from my experience, I remember that a lot of medical appointments followed my diagnosis and I had to miss school on several occasions. That’s why I decided to share it with my best friend at school. My teacher only knew that I had been diagnosed with a syndrome but the medical certificates did not disclose everything in detail. I’m sure if you share it with someone you’re very close to at school, they won’t mind giving you their notes from the classes you missed- and extra emotional support.
  3. And then we have the family. Families are complicated. Or, as J.D. Salinger puts it:

    “I love you to pieces, distraction, etc”

    Even though you’re blood-related and the news might take over at the next big family dinner, I would only tell those people you really get on well with. When I was diagnosed, my mum was the first one to find out in the family. And even though, we were not on good terms (I was a melodramatic, sixteen-year-old girl and she was a burnt-out businesswoman…), somehow my syndrome brought us closer together. If it hadn’t been for her, I wouldn’t have gone through surgery. And I would have regretted that later on. Thus, if you have someone you can trust in your family and who, you know, will support you on what is to come, you should confide in them.

  4. And now we have to address the elephant in the room: your partner. If you are single, then there’s nothing to worry about. It’s up to you if you want to tell your flings. I know I wouldn’t because it takes me longer to open up to people. However, if you are in a relationship, the decision might be much more difficult. At the end of the day, the decision is yours because it is YOUR BODY.
    However, I’d still say that honesty goes a long way- particularly in relationships. Since this syndrome can affect one’s sex life, I think that there is often no way around telling your partner. Choose the right moment and make sure that you have all the time you need to discuss it in length and until there are no questions left. If this is all confusing to you, then chances are high that this might be at least equally confusing to your partner. I cannot foretell how your partner will receive it, and it might even impact your relationship in many ways. But hiding it might hurt you both in the long run, as the syndrome will influence your family plans anyway.

    Finally, it’s essential to mention that for every single relationship, be it your romantic partner, your family or your friends, this conversation might be tough and even hurt a lot. It might even be that you lose people who you thought would be supportive. There might even be people who will not be accepting, but that fear should not stop you from telling your truth. Because I CAN ASSURE you that there are also people you will be there to uplift you and catch you when you think you can’t go on. People who will lend their shoulder to you when you need a good cry. People who will spend the day researching about surrogacy because they want to have a family with you. And that’s when you’ll know that these are the people you can share anything with!

 

 

 

My Infertility Reading List

The feeling of relating to someone has something soothing and magical. Even better if that person is a fictional character. If I feel down, or stuck in a life crisis, I love to browse my library for a comforting read or even to zap my way through Netflix to find a series that reflects my mood.

However, I noticed that I’ve never really spent time on searching for MRKH films, books nor series. This could have been quite beneficial, especially at the age of sixteen when I had just been diagnosed with the syndrome. Perhaps it has been my way of supressing it…
And unfortunately, I believe that there is a serious lack of media covering infertility (let alone MRKH). There are only two characters that come to mind, namely Robin from HIMYM and then Monica and Chandler from Friends. Why, if 1 in 5,000 women suffer from this condition, aren’t there more films or books about MRKH?

So, I decided that it was urgent to roll up my sleeves and do my own research (since infertility does not appeal to mass media). Disclaimer: I found it difficult to find books that are specifically about MRKH, but the feelings that come with infertility in general also reiterate what I felt and still feel about the syndrome.
Here’s the reading list that I put together:

  • The Light Between Oceans by M.L. Stedman
    “A boat washes up on the shore of a remote lighthouse keeper’s island. It holds a dead man and a crying baby. The only two islanders, Tom and his wife Izzy, are about to make a devastating decision. They break the rules and follow their hearts. What happens next will break yours.”
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  • The Same Sky by Amanda Eyre Ward
    Goodreads: “In this heartrending and poignant novel, award-winning author Amanda Eyre Ward tells the story of Alice Conroe, a forty-year-old Texas barbecue owner who has the perfect life, except she and her husband long for a child. Unable to conceive, she’s trying desperately to adopt but her destiny is quickly altered by a young woman she’s never met.“
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  • A House For Happy Mothers by Amulya Malladi
    Goodreads: “In trendy Silicon Valley, Priya has everything she needs—a loving husband, a career, and a home—but the one thing she wants most is the child she’s unable to have. In a Southern Indian village, Asha doesn’t have much—raising two children in a tiny hut, she and her husband can barely keep a tin roof over their heads—but she wants a better education for her gifted son. Pressured by her family, Asha reluctantly checks into the Happy Mothers House: a baby farm where she can rent her only asset—her womb—to a childless couple overseas. To the dismay of friends and family, Priya places her faith in a woman she’s never met to make her dreams of motherhood come true.

    Together, the two women discover the best and the worst that India’s rising surrogacy industry has to offer, bridging continents and cultures to bring a new life into the world—and renewed hope to each other.”

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  • Changed by T.S. Murphy
    Good news: this book (although it falls into the romance genre) deals with MRKH!

    “Kate McGuire has loved her brother’s best friend for years—an older guy who didn’t know she existed and whose smoking-hot girlfriend could punch her into next week. But now Kate’s eighteen and Quinn Haley is girlfriend-free and looking at her like she’s definitely outside the friend zone. Everything is working out perfectly—until a devastating medical diagnosis throws her life into a tailspin.

    Quinn Haley has dealt with abuse and rejection his entire life, but when he finally breaks up with his cheating girlfriend while home from college for Christmas, he realizes his best friend’s little sister has always been there for him. Only now, Kate’s all grown up and frankly adorable. Definitely not someone he wants to keep in the friend zone.

    Kate’s entire future will be a lifetime of no. No children. No sex. No Quinn. And when Quinn won’t take no for an answer, she fights him every step of the way.”
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  • Secret Daughter by Shilpi Somaya Gowda
    Goodreads: “Somer’s life is everything she imagined it would be — she’s newly married and has started her career as a physician in San Francisco — until she makes the devastating discovery she never will be able to have children.
    The same year in India, a poor mother makes the heartbreaking choice to save her newborn daughter’s life by giving her away. It is a decision that will haunt Kavita for the rest of her life, and cause a ripple effect that travels across the world and back again.
    Asha, adopted out of a Mumbai orphanage, is the child that binds the destinies of these two women. We follow both families, invisibly connected until Asha’s journey of self-discovery leads her back to India.“
    dk
  • Elizabeth, Just Sixteen by Cecilia Paul
    MRKH read!!
    “Elizabeth Appleton is a sweet and easy-going adolescent. But as she turns sixteen, she discovers something so devastating about herself that her whole world is turned upside down. Elizabeth has been born without a womb or a vagina and is diagnosed with MRKH, an unusual congenital disorder that affects the female reproductive tract. Frightened and confused, Elizabeth must struggle to understand how she can still be a girl but no longer a ‘normal’ one. As she questions everyone and everything around her – her burgeoning sexuality, her gender, her hopes for the future – Elizabeth must fight against the shame and betrayal she feels if she is to ever become the woman she has always hoped to be. In her first novel, Cecilia Paul, now a retired expert in the field of MRKH, sensitively explores and illuminates this complex and often emotionally fraught medical condition, in order to raise public awareness of MRKH and to support those affected by it.”

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  • The Handmaid’s Tale by Margaret Atwood

    • You might have seen the Netflix adaptation. But I would still recommend the book.

    “Offred is a Handmaid in the Republic of Gilead. She may leave the home of the Commander and his wife once a day to walk to food markets whose signs are now pictures instead of words because women are no longer allowed to read. She must lie on her back once a month and pray that the Commander makes her pregnant, because in an age of declining births, Offred and the other Handmaids are valued only if their ovaries are viable. Offred can remember the years before, when she lived and made love with her husband, Luke; when she played with and protected her daughter; when she had a job, money of her own, and access to knowledge. But all of that is gone now…”
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  • The Friend Zone by Abby Jimenez
    Sounds like a very light read. But we all know that infertility is that funny.

    “Kristen Petersen doesn’t do drama, will fight to the death for her friends, and has no room in her life for guys who just don’t get her. She’s also keeping a big secret: facing a medically necessary procedure that will make it impossible for her to have children.

    Planning her best friend’s wedding is bittersweet for Kristen—especially when she meets the best man, Josh Copeland. He’s funny, sexy, never offended by her mile-wide streak of sarcasm, and always one chicken enchilada ahead of her hangry. Even her dog, Stuntman Mike, adores him. The only catch: Josh wants a big family someday. Kristen knows he’d be better off with someone else, but as their attraction grows, it’s harder and harder to keep him at arm’s length.”

    friend zone

  • The Girl on the Train by Paula Hawkins
    Even though it is not really revealed in the blurb, the protagonist suffers from infertility.

    “Rachel catches the same commuter train every morning. She knows it will wait at the same signal each time, overlooking a row of back gardens. She’s even started to feel like she knows the people who live in one of the houses. ‘Jess and Jason’, she calls them. Their life – as she sees it – is perfect. If only Rachel could be that happy. And then she sees something shocking. It’s only a minute until the train moves on, but it’s enough. Now everything’s changed. Now Rachel has a chance to become a part of the lives she’s only watched from afar. Now they’ll see; she’s much more than just the girl on the train..“

    girlonthetrain

  • Rokitansky by Alice Darwin
    A biiiig drum roll for our final star:

    Three women. Three stories. Three secrets.

    When school girl Moira Sweeney is diagnosed with a rare condition, it changes everything. She had known for as long as she could remember that something was wrong, what she didn’t know was what happened next.

    When Tori looks in the mirror, she sees a successful travel writer, happily married to Harry. Everything is just as it should be. Almost. She is all he ever wanted and less, so much less.

    Mrs Brown knows she’s getting too old to run Godalming Lodge. Her arthritis and her heart ache and she longs to spend more time with her husband and less time with elderly residents and her never ending pile of paperwork.

    Three women, with three stories of love, hope and childlessness and three secrets that connect them all.”

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    And that concludes my infertility reading list. I can’t wait to get started! The first book I purchased is The Light Between Oceans. Isn’t it strange that I have never read any books about infertility?

    What about you? Do you have any infertility reads that you would recommend that I did not include in this list? Please share them with me below in the comments, or let’s connect on instagram @myrockydances!

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.