A Passion for MRKH and Genetics– A Guest Blog by Morten Herlin

Hi MRKH Community. I asked Morten Herlin to talk to you about his recent paper that examined long-term outcomes from various procedures used to create a vaginal canal. After a few missed Facebook phone calls, we ended up communicating via Messenger, and I was pleasantly surprised to find someone who is also exceptionally interested in MRKH and Genetics… I think we could talk for hours about this… Amy Lossie

Hi Everyone,

This is my first blog here at Beautiful You MRKH, and first I would like to use the opportunity to express my excitement for the work Amy and Christina have done establishing this community. This is truly an important job in order to raise awareness and provide a safe place in which you can ask questions and share your thoughts with each other.

My name is Morten Krogh Herlin, 29, and I am from Denmark. I am a medical doctor and currently doing my PhD at the Department of Pediatrics and Adolescent Medicine, Aarhus University Hospital. Back in 2013 when I was a medical student I first got involved with MRKH research. After attending an MRKH meeting in Poland in 2014 with both patients and health professionals, I came up with the idea to establish a large nationwide population-based cohort on MRKH syndrome named DanMRKH.

 

44108594_2192513824092293_2709155505053368320_n

The public health care system in Denmark provides a universal fully tax-funded health care with free access to hospitals and primary medical care. Together with the thorough registration of diagnoses, it provides an optimal setting for doing population-based research, which is generally lacking in the published MRKH literature. First, we reported on the prevalence and patient characteristics. This study (link) is one of only two nationwide population-based studies in the literature to investigate the prevalence of MRKH syndrome (both reporting 1 in 5000 female live births).

Just recently, we published the second study (link) looking at the long-term anatomical outcome following the treatment of vaginal agenesis in MRKH syndrome by reviewing the patients’ medical records. Owing to the nationwide setting, we could include patients from all specialized centres in Denmark that perform different kinds of treatments. The most frequent treatments used were split-skin vaginoplasty (McIndoe operation), self-dilation (Frank’s method) and coital dilation (dilation by intercourse, d’Alberton’s method), which were included in the statistical analysis. Our conclusions support the current recommendation by the American College of Obstetricians and Gynecologists (ACOG) (link) of dilation as the first-line therapy, owing to similar outcomes in vaginal length and much fewer complications compared with surgery. Interestingly, we found that coital dilation had the best outcome and lowest complication rate of all three treatments. This treatment has not been given much focus in the literature, but seems like a promising alternative to self-dilation in patients able to have regular sexual activity. We speculate that the close support of a partner is helpful overcoming the challenges during treatment. Unfortunately, this treatment is not an option for everyone, which has to be considered when discussing the different treatment options.

It should be noted that as our study only used the information found in the patients’ medical records, we were not able to include more subjective measures such as patient satisfaction. Patient satisfaction is the single most important factor for treatment outcomes and we hope to include those questions in a future study. It should be noted that no patients in our cohort had the Vecchietti operation (laparoscopic traction vaginoplasty), which is performed in other countries with promising results.

Finally, it is important to emphasize that there is no perfect treatment to fit all. Some experience difficulties going through dilation owing to different reasons (e.g. discomfort, pain, emotional aspects). These experiences may reduce enthusiasm for continuing dilation, resulting in an unsatisfactory outcome and negative feelings of the procedure for the individual. In these individuals, surgery might be a better option. It is important to stress the necessity of frequent and regular dilation after the surgery to avoid shrinkage of the vagina, which could result in additional surgeries (in our study 33% of patients who underwent surgery needed at least one additional operation). Through patient-centered care and careful dialogue between people with MRKH and clinicians, we hope in the future to be able to identify the most promising, individualized treatment options for each person. Our study and that conducted by the ACOG, the most comprehensive literature review to date (link), conclude that dilation should be first-line offering, as dilation is equally effective and has the lowest complication rate of the treatments we tested.

Now, that the cohort is established, we hope to be able to continue with other studies focusing on various aspects of MRKH syndrome, including genetics, psychosexual aspects and more detailed clinical follow-up including patient satisfaction following treatment. This will, however, take some time to set up.

Thanks for reading!

All the best,

Morten Krogh Herlin

MD, PhD student

Pediatrics and Adolescent Medicine

Aarhus University Hospital

Denmark

Advertisements
Posted in Uncategorized | Leave a comment

Your heart is worth the time. You are worth the time.

There is a Japanese art called Kintsugi.

Kintsugi is the art of repairing broken pottery with gold dusted lacquer to repair it.  The philosophy behind it is to treat the breakage and show it as part of the history of the object, rather than disguise it or throw it away.  Once finished, the broken pottery is shining with gold in all the cracks. The Japanese believe that the history of an object makes it more beautiful.

I’ve dropped a plate before, and it shattered on the ground in dozens of pieces. It looked irreparable to me, and I threw it away. But what if instead I had worked to repair it? What if I had gathered all those pieces together and patiently glued them back together with gold dusted glue? What if I then displayed it proudly, showing that what once was broken I had worked so hard to make beautiful again? What if my formerly normal average plate became a work of pride, despite once being shattered? What if the damage shone beautifully on the plate, like a work of art?

My heart felt like that damaged plate after my initial diagnosis with MRKH. It felt shattered into so many pieces and just that like the plate, it seemed irreparable to me.  I threw it away… I threw myself away.  I couldn’t see how a person I saw as irreparably damaged could ever be beautiful.

Eventually though, my heart refused to be ignored.  And I began working on repairing my heart.  With the help of family, friends, and the support of my MRKH sisters I painstakingly gathered those pieces and put them back together.  I filled my cracks with gold.  And just like the Japanese art of Kintsugi, I came out on the other side shining more brightly and beautiful than before. When I think of my heart now I like to see it with gold filled cracks representing the hard work of the repairs I have made to it.  There is a deep crack representing my MRKH diagnosis. There are also cracks representing other difficult and challenging times in my life. But those cracks are not beyond repair. They just need a little work, and a little patience, to turn them into something beautiful.

Your heart is worth the time. You are worth the time.

~Kristen

Posted in acceptance, awareness, hope, infertility, MRKH, self love, Uncategorized | Leave a comment

Dear My Beauty

It’s not fair nor unfair. It’s not be pitied nor disregarded and it is the invisible grief that most will never talk about. The inner dialogue for infertility is that of subtle sadness, disguised aggression and palpable fear. Whether you ever desired to be a parent or not is quite irrelevant – but when you are questioning the evolutionary pot hole in the road that threatens empty Christmas’s or feeling ‘that kick’ for the first time, there is only one thing to do- and that’s talk about it. Here is an MRKH warrior talking about it.

Dear, My Unborn Beauty,

I am sorry I let you down.

I am sorry that we never got a chance to truly meet-I did everything I could to find your father in time. I tried to fall in love and be loved, in the hope that your home would be built. This simply has not happened and now, I feel as though I have to let you go. It feels impossible and I am desperate to meet you but I just don’t know how to make this happen.

I honestly didn’t try and think about you too much over the years- I wondered why I didn’t feel that achy pang to meet you, leading me to think that perhaps I was even more abnormal. I believe now, that this simple thought of not meeting you may have been too distressing to comprehend. Secretly of course, I always hoped that I would find the means and my true love to make you. Beauty, my darling daughter – please know I love you. I love your beautiful blue eyes and love for nature. I admire your strength to meet me too and the way our silent love story began. With such sheer determination, you never really left my side. I am trying to find a way to help others through this pain yet my empathy perhaps only feels warranted now. A mourning world exists with so many wanted children who never quite make it.

Where do you all go, when the hope does?

My promise to you -I will carry you through birthdays and Christmas’s. I will teach you to sing when I do and offer you gentle dreams when I fall asleep. I will proudly see you learn to walk as I take my first steps of the day and dedicate my morning practice to your cosmic soul, wherever you are. My muster for your existence will never go despite your actual presence being through my own sacred moments and not play-dates with others. Precious one, you will always be my ultimate destination. Through words and ocean swims, you are my warmth and the peace these simply pleasures bring to me. 

Your grandparents, they so love you too. Their dreams to dote on, as you unwrap gifts and take your first bike-ride through my childhood streets still sit on the mantelpiece at home. Gosh, they loved your mother so much. They seldom spoke of you, for even the most desperate manifestation techniques may not deliver you to us.

Be somewhere where I can find you when I finish a busy day and halt this busy life. And forgive me. Please forgive my not knowing soon enough that I wanted you. Forgive me for only waking up to your mumbles and crying now. I couldn’t hear the cries of any past dreams and only now, do I smile thinking of you when no-one else is looking.

In the middle of concrete towers and a restless city, my precious, unborn beauty –you bring me calm and escape.

You walk just one step to my left. You smile back at me in mirrored perfection – with such sheer grace and angelic lightness, you are there. When the branches move, its you. When the ocean breaks, it’s you who cracks the wave and when 5 o’clock comes, those shadows that we see, have you spinning in themThey say the footprints in the sand are those of the Lord’s when he carries us through our difficult times. I say, if the footprints are the Lords, then the shadows are his friends. 

Take my hand and walk with me. 

You are so beautiful and I will always place my hands in prayer for your safety and happiness.

From me.

Sincerely,

Anonymous

 

Posted in acceptance, family planning, infertility, MRKH, MRKH sisterhood, MRKH supporter, sisterhood, Uncategorized | Tagged , , , , , , , , | 1 Comment

A Glimpse Into the Fostering Process

You know those rare situations when you meet a beautiful couple whose love for one another fills the room, they are tons of fun to be around and you can just tell they are good people? Well, Sara and Stuart, a special couple I met when visiting the Pacific Northwest is one of those couples. I friended Sara on social media after returning home from my trip because we talked briefly about my non-profit organization and adoption and she seemed like a cool chick I would want to stay in touch with. I was right. At the end of 2015, Sara joyfully posted on social media that she and Stuart, were officially licensed foster parents! Awesome! There aren’t nearly enough foster parents in this world to house all of the deserving children that need homes and these two would be perfect for the job! After their big announcement, I got in contact with Sara and asked her if she would share her journey to foster and she agreed. Below is Sara and Stuarts’ journey in her words.

Thank you, Sara and Stuart, for changing the lives of the children who are lucky enough to be placed in your home and for inspiring people like me, who hope to foster to adopt in the future!

❤ Christina

Shank Family

There’s a lot of misconceptions about foster care. So many people say “Oh, I would love to be a foster parent, but I can’t because of X,Y,Z.” Here are some of the ones I’ve heard recently.I can’t be a foster parent because…”

I have roommates. As long as your housemates agree to get finger printed, then you’re eligible. 
I work full time.Child care is paid for. They have programs that will find you emergency child care so you don’t need to miss work. 
– I can’t commit to being a full time parent. Most counties are in desperate need of respite care (short term care, 24-48 hours). You can take a kiddo for a weekend a month if you’d like too! 
There are only older children in Foster Care. Nope! There are lots of babies. We get emails on a weekly basis for kiddos who are infants. 
 The kids in foster care are damaged/troubled/aggressive. Foster kids have done NOTHING wrong to get themselves into foster care. Their parents are just unable to take care of them. Bad things have happened to these kids, that doesn’t make THEM bad kids. 
I’m too young, too old, a student, single, have pets, already have kids etc. If you have enough room in your home and your heart to care for a child, you should definitely consider applying. So many of these things don’t matter in the application process. 
Shanks bedroom
This was our process chronologically.
FosterCare Orientation– This was a simple 3 hour class that explains the need for foster parents and what you can generally expect with foster care. It also explains the rest of the application process as well as giving you the massive packet to start filling out.

Caregiver Core Training– These classes take place over the course of a month. They’re 24 hours total. I loved this part of the process. They had experienced foster moms come in and tell you their stories/ tips & tricks. They had bio moms come to talk about their children were in foster care and were successfully reunited. They also had young adults who either aged out of foster care or were adopted come in and talk about their time in foster care. These classes really gave you a taste of what foster care is like for everyone involved. I think it was also really beneficial to prospective foster parents to meet bio moms and hear their stories. I can’t speak for everyone but it definitely made Stuart and I a little more empathetic to some of the struggles that these women go through when they lose their child and how much work it really takes to achieve reunification.

The Packet of Hell– SO MUCH PAPER WORK! You need 3 people to write you detailed references, you need to go to the doctor for a check up and get a bunch of vaccinations (including flu shots for anyone living in your house), you need to get finger printed for background checks, you need to get pay stubs and provide proof of car insurance, you need to go to a CPR/blood borne pathogens training, get your pets vaccination records, and fill out the most extensive packet about the entirety of your life thus far.
Homestudies– The worst anxiety of my life was the hour before our first home study. Which turned out to be really silly considering we had the sweetest social worker ever. He didn’t do a white glove test and he maybe spent 5 minutes total walking through the house. The questions were definitely personal, but he made us feel super comfortable while he was asking them. It’s important to remember that these social workers want “real” people parenting these kids. If you’ve had a rough childhood, a past of drug use, etc. In a lot of ways it can make you a little more compassionate to what these kids lives are like, or maybe help you relate to the bio parents a little better. You don’t have to be perfect, you need to be real.

Shanks coloring

It’s always been the plan for Stuart and I to try and grow our family through foster care adoption. As far as we know, we’re perfectly capable of having a child biologically, but adoption is just something that’s always made sense to us. We started the process in May 2015 and got our license that December. We started getting calls/emails the day we were licensed. We just started taking placements in early January. We did respite care for a 17 month old boy who was awesome. We spent lots of time going to parks and made it to the aquarium. He was surprisingly easy and had us laughing the entire time he was with us.
Right now we have an adorable 3 1/2 year old boy staying with us. He’s so funny and has the most incredible imagination. He makes up stories that are so articulately thought out and are full of amazing detail. Bed time is a struggle and there have been a few temper tantrums which have been tricky to navigate, but all in all it’s been completely manageable and a lot of fun. He may be longer term, but we’re not sure. It sounds like we’ll get more answers mid- February.
Foster Care is a wild ride. It’s the craziest thing Stuart and I have ever done. There’s nothing like getting a call for an emergency placement on your way home from work and then 45 minutes later have a kid dropped off at your door. We’re so excited to eventually grow our family through foster care adoption, but right now we’re just trying to take it day by day. My job contract ends in June, and I’ll be staying home for awhile after that. Stuart and I l would love to be able to take in a sibling set eventually.
12575800_10153892683988126_13877135_n
Some things I would advise for prospective/new foster parents are:
– Try not to get frustrated with the application process. It’s going to be long, irritating and stressful. You WILL get licensed and it will totally be worth it.
– You will be forced to learn how to “go with the flow.” I’m a total type A. I like lists, plans and knowing what to expect.  If you’re a foster parent, you literally have zero control. At any point in time things can change. Foster care has made me realize that there is no point worrying about “what ifs?” because there is absolutely nothing you can do about the situation.
– If you have a kiddo of a different race then you, get ready for a lot of stares and questions. The little boy we have right now is black. We’re white. When we’re out in public and he addresses us as “Mommy and Daddy” you start to see heads turn. Random strangers will ask you a lot of questions, specifically “Soooooo what happened to their real mom?!”  There’s a funny parody that addresses this here https://vimeo.com/110548783  It’s been a little tricky to figure out how to shut those kind of questions down tactfully and quickly, especially when our little guy is within ear shot.

 

Posted in family planning, foster, foster parents, foster process, infertility, MRKH, Uncategorized | Tagged , , , , , , , | 1 Comment

You Changed the WORLD!

Something wo12277111_1906738929551954_297280116_n.jpgnderful happened today! I received a letter from an 8th grader in Ohio. She read an article about uterus transplants and wanted to write to someone affected by MRKH. It’s part of a class assignment on current events. Here are her questions:
  • I was wondering what it is like to have MRKH.
  • Are there many medical problems involved with this disease?
  • Would you be interested in getting a uterus transplant?
  • Are there many people living with the disease?
  • Do you think that uterus transplants will become popular among people with MRKH?
  • Is there any way to treat MRKH besides the uterus transplant?
I can’t begin to describe the feelings. It’s goosebumps and elation and knowing that an entire class of 8th graders will have heard about MRKH.
Thank you to all of the MRKH Community for taking 10 days to spread awareness, to create videos, send in pictures, stories and poems. You are changing the WORLD!
Posted in acceptance, awareness, hope, infertility, MRKH | 1 Comment

The Age of Infertility

                                infertility 2

As you get older, conditions get harder and everything changes. When you’re young, no one really tells you what adversities are ahead or how to handle them accordingly. Honestly, I can’t even handle taking out my own trash or changing the batteries in my smoke detectors. You may be supported financially, but mentally you feel isolated, as if you’re experiencing an existential crisis, as minor as it may be.

As I advance into my 21st year I begin to realize I’ve been stripped of my training wheels somewhere between trying to find my niche, while simultaneously establishing my individuality. It’s hard for me to admit, but growing older has made it harder to accept my infertility. As I scroll through my engagement photo-laden Facebook feed, I see more and more women announcing their pregnancies and the endless joy they share with their significant others. What makes it worse is my unnecessary desire to browse the Internet and read stories of women who have been dumped because of their inability to bear children. As dramatic as that sounds, infertility and aging do not go hand-in-hand. No one tells you how difficult it gets, as a young woman, to grow closer and closer to the gestational age knowing, personally, it’ll never be the natural process it was meant to be.

When I was sixteen I didn’t really understand my prospective future, especially after the multiple laparoscopies. I didn’t even know what a hysterectomy was until after I had actually gotten one. I was emotionally numb for a while, but the idea of being barren gradually began to weigh on my conscience. I don’t ever self-pity and I would never wish for anyone to feel sorry for me. Honestly, I barely talk about these things with my own best friends, not because I’m insecure, but because I’ve recognized that everyone is experiencing something arduous. When you listen to those around you and acknowledge their obstacles, yours begin to shrink.

Aids like therapy or medication only benefit to the point in which it is time to accept your hardships. As you mature, many of life’s circumstances get tenacious and conflicts not only multiply, but progress if you choose to neglect them. For years I’d been thinking that the solution to all my problems is to simply discount them, but I have come to realize that the only genuine resolution is to comprehend the fact that struggle is inevitable. Infertility is my struggle, and aging is the antagonist that provokes it. With this comes a feeling of inadequacy as a woman, feelings as though my own body has betrayed me. No one told me that mental strife would be included with these disabilities or that I would have to teach myself to accept what is out of my control. As troubling as these situations are, we mature by constructing our own solutions. Growing up happens through the very assembly of explications to our dilemmas. Infertility sucks and the solutions are expensive, but I recognize that everyone around me is undergoing a hardship. The worst thing I can do for me is overlook my pain. I’ve never been this honest with a public audience, let alone myself, but acknowledging this mental dissension and taking time to grieve has become unexpectedly liberating.

As a young woman it is hard to avoid blaming myself and feeling ashamed of my body. Society has set impractical standards for women to effortlessly achieve reproductive success, as if it is our primary purpose in life. Aside from these archetypes, I encourage all women experiencing the challenges of infertility and other struggles to acknowledge every pain and emotion these challenges have ever evoked. The sooner you accept your grievances, the easier it becomes to heal and avoid allowing this impotence to be a reason why you question your own femininity.

Medical discrepancies should never define you. As I have emphasized in my preceding blog posts, health related anomalies can be a beautiful thing. Learn to metamorphose them into something empowering like a platform or a foundation that resonates with a broad demographic. I have always encouraged females diagnosed with MRKH to transform their diagnosis into a purpose to inspire. I now realize I must do the same with infertility. It should not be my burden, but my reason to enlighten the lives of other women approaching the same trial. As challenging as all of this has been for me to accept, everything happens for a reason and that is true amongst every adversity.

If you or a loved one is suffering from Müllerian agenesis or infertility, please prioritize your reproductive health and visit https://www.beautifulyoumrkh.org or http://www.resolve.org . Please consider donating to the Beautiful You MRKH Foundation in celebration of Giving Tuesday so they can continue to do their important work and help 1 in 4500 born with MRKH.

-Carly

Posted in acceptance, awareness, hope, infertility, MRKH, self love, sisterhood, Uncategorized | Tagged | Leave a comment

The ‘Markings’ of a Good Life

My land legs are a bit wobbly as of late- and when I say land, I mean life and when I say wobbly, I mean vulnerable. I am essentially feeling vulnerable in life. When you have committed to exploring one’s self, you tend to uncover more than you bargained for but the commitment is involuntary and there is no going back. The journey to self-love is similar to soft-sand running – the views can be beautiful and you know that you are toning the jiggly bits but it can be an exhausting process- muscles ache, skin hardens and it’s nothing like the movies portray.

MRKH, a condition which has been explained to me as a ‘genetic pot hole in the road’ has been a mammoth and gruelling process of self-acceptance since being diagnosed in my late teens. Being told at such a vulnerable and innocent age that you were born without the certain ‘parts’, that instinctively and innately define us as a ‘complete’ woman, was nothing short of harrowing. Though this no longer burdens me, it’s the scars that do.

No-one ever really stares as such or asks the uncomfortable questions. It could be in my head? Though, for something which is apparently quite ‘common’ in a teenager’s life, I haven’t seen anyone with scars of self-harming. Friends say, ‘could be anything- you could of fallen into something’ – yes, a razor blade lovely ones! However dark humour aside, I do see their kindness and I love them even more for wrapping me up in this beautiful and unconditional way but frankly, I am really upset that I chose to brand myself in this way. The process of self-acceptance has rattled me in a way that I simply did not anticipate.

So, where to from here? I tackle this in the only ways I know how- I up my yoga practice, I swim alone and be okay with that, I wear shorter sleeves on purpose and try to say thank you at compliments rather than ‘hump’ in the opposite direction. When I go on a date, I try to have twinkly eyes as opposed to internally rehearsing scripts of apology when my past is uncovered – do I say I had a difficult teenage life? Do I say how I’ve come through the other side? Do I not say anything and wait for the question to be asked? Maybe the question need not be asked?

Only recently, I was walking to meet one particular boy for a Sunday afternoon of ocean frolicking and summer silliness. But as I approached the beach, I so very nearly turned back. Why? Because there was a chance we may go for a swim. A swim! I would have to deliver my script, unclothe my past, absorb the stares and risk a potential opportunity for love.

When did my fears become so profound that I would deny myself such precious moments where the ocean and summer were to be deliberately avoided? This is when I chose to change my script.

Self-harm is not attention seeking or abnormal (as one date uttered under his breath at the end of a meal). It is not a weakness or a reason to be ashamed. My shame is stale and expired. For me during that sad time, I was finding an expression when I didn’t have the tools to do so in any other way.

My expression was fear and a simple sadness at ‘not feeling good enough’. I did this practice alone; quietly. I didn’t understand it. I just know that when I do peer down at the scars that will never go, I have an opportunity to embrace and love all that I am. And all that I will become.

As for self-love- It’s a daily mantra and opportunity to be kind to me. I will no longer apologise or fear moments in my life for I am here, sitting in a precious coffee shop surrounded by laughter, sticky-treats and books. Last night I called my parents and today I will head back onto the yoga mat with my mermaids and special one’s.

As for falling in love – never has there been such a perfect moment for my own little love affair.

-Ally

Posted in infertility, MRKH, self love | Tagged , , , | Leave a comment