Don’t Read The Comments!

An Open Letter to the authors who placed comments in response to the article recently published on the Official Facebook Page ‘Break’, titled “Cute Girl Born Without A Vagina Starts GoFundMe To Make Her A ‘Real’ Woman.”

The facts: Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome is a congenital condition that results in the incomplete development of the female reproductive tract. MRKH occurs when development halts sometime during Müllerian (female reproductive tract) development, which spans from the 5th to the 18th week of gestation. In some countries, MRKH is also called Rokitansky Syndrome, Küster-Hauser Syndrome or Rokitansky-Küster-Hauser Syndrome.

The statistics. MRKH affects ~ 1 in 5000 females/girls/women/ladies; all of whom are cute. MRKH is characterized by an underdeveloped or absent uterus, cervix and upper vaginal canal. The lower vaginal canal, which forms from the urogenital sinus is often present, but does not expand fully. Although most women with MRKH are incapable of carrying their own children due to the severe underdevelopment of the reproductive tract, it is possible for most to have biological children through the use of assisted reproductive therapies and gestational carriers (surrogates).

The emotions. This is an unfortunate time, where we need to place our global advocacy and awareness on hold to address such ignorant and repugnant comments. We thought that frankly, social opinion had moved on. But that’s okay – every post is an educational opportunity – we should actually be offering our thanks to those who took the time to respond with such flippancy and insensitivity.

It sounds like science fiction doesn’t it? Born without a womb! This of course means, we cannot carry our own children. We cannot experience and immerse ourselves in what can come so naturally and effortlessly to most. We do not begrudge the fertile. However, many of us claim our right to womanhood. There is so much more to a woman than being able to carry a child. We are mothers, aunts, daughters, lawyers, scientists, doctors, world travellers, accountants, grandmothers, students. We are enough.

Gosh, and then the headline claims we are born without a vagina! It gets so old, this medically inaccurate summation of our worth. The vagina is in fact partially formed – the length does vary as do our reasons to either create one or leave be, as biologically formed. Yes, medical intervention in the form of surgery or dilatory therapy is introduced to the young woman. Yes, a young woman. A scared and fragile young woman at that.

Disclaimer: A vagina is not for a penis. A vagina is not the urethra. A vagina is not the clitoris – we even have orgasms. And being born without a fully-lengthened vagina does not automatically redirect traffic to our anal canal. Though we of course, don’t discriminate against preferences held by the authors if you partake in anal sex ,that would be judgmental.

We would like to ask for three simple actions: kindness, understanding and empathy. We would like to ask for a considered response, that before you press [post], imagine this woman being your sister, your cousin, your (future) daughter, your friend, your lover, your wife.

Global MRKH is hosted by the founders of the American based Not-For-Profit organisation, the Beautiful You MRKH Foundation and the Australian based organisation, the Sisters for Love MRKH Foundation. We do not advocate for or against personal opinion. We do not judge individuals for their lack of knowledge or place prejudice. We advocate for support and awareness of MRKH, so when articles like these are written and published, posts like these do not emotionally traumatise those who suffer from MRKH and prevent disclosure or self-acceptance. Finally, we would like to offer our apologies in advance should you receive a diagnosis, that renders your life in pieces despite lack of choice or influence.

I hope we can be of support to you then, whatever the circumstance may be.

We are like that.

Kind regards,

Global MRKH

 

Advertisements

EXCLUSIVE FULL INTERVIEW! Against the odds: Meet the woman behind America’s first Uterus Transplant

lmc utX

“My beliefs have taught me there is a purpose and a plan for everything. I also knew I was in the best professional hands and I always felt safe. Never once did I feel like a science experiment.”

As a 15-year-old schoolgirl Lindsey McFarland will always remember the day her mother took her to the doctor because she was worried her daughter hadn’t yet had a period – a symptom her doctor took very seriously. “They suggested I might have a hormone imbalance or perhaps my brain signalling wasn’t working,” says Lindsey, “They even suggested that I could have a brain tumor. I didn’t stop crying the whole time they did the pelvic exam.”

After CT scans, blood work chromosomal tests and an MRI the diagnosis wasn’t life threatening but for Lindsey it was just as shocking. “The doctor explained I had a very short vaginal canal,” she says, “I had also been born without a uterus. The doctor told me that if I wanted to be a mother he suggested that I consider adoption. I was 15 years old!”

After seeing a specialist Paediatric Gynaecologist, Lindsey had a name for her congenital condition – Mayer-Rokitanksy-Kuster-Hauser (MRKH) Syndrome, which affects 1 in 5000 females, characteristically defined by the malformation and underdevelopment of the uterus, cervix and vaginal canal.

“MRKH really altered my identity,” she says, “I became Lindsey who had no uterus. I don’t think people realise that they start looking different at you.” But, her devastating diagnosis was also the beginning of an incredible learning curve. “At the time my grandfather was going through cancer treatment,” says Lindsey, “When I asked Papa ‘how do you cope?’ he told me to try and find your true purpose. His positivity was so very inspiring.”

LMBOYS.jpg

Lindsey with husband Blake and her three adopted boys

Over ten years later Lindsey is happily married with three adopted children but in 2011 decided to take another courageous step. After reading about a Swedish Research Team who were exploring the world’s first Uterine Transplant resulting in the first live birth in October 2014, she sent an email to American surgeon, Dr Andreas Tzakis. In September 2015 she became the only patient in America to be selected to undergo the pioneering procedure. Five months later she received a phone call, “We have a donor. Be on standby.”

The surgery which was expected to take seven hours came closer to ten, as Lindsey’s husband slept at the hospital. Uterine Transplants have triggered worldwide discussions among the medical community including high profiled ethical debates due to a number of cited risks involved in the procedure. Was she aware of the risks?

“I was excited and anxious and in total disbelief,” says Lindsey, “But, I have grown up believing, that when it’s my time to go, I will go. My beliefs have taught me there is a purpose and a plan for everything. I also knew I was in the best professional hands and I always felt safe. Never once did I feel like a science experiment.”

utxlm.jpg

Lindsey following the procedure to remove the uterus

After the operation she was admitted to Intensive Care where a biopsy of the ‘new’ uterus showed that it was pink, healthy and receiving good blood flow. This meant she could be discharged to go home, due to take part in a press conference a few days later to discuss the success of the procedure.

“The hospital even arranged a hair and make-up stylist for me to be ‘TV ready’” recalls Lindsey, “There were a lot of people and bright lights. I was pushed in using a wheelchair because I was still recovering and didn’t want to fall on stage.” Following the press conference there were more media interviews. “I noticed I was feeling really tired,” says Lindsey, “As I got up to go to the bathroom, I noticed all my clothes and bandages were covered in blood.”

Due to an infected artery, the blood flow to the uterus had been hugely compromised. This meant it needed to be removed – urgently. “I was crushed but I didn’t cry,’ recalls Lindsey, “I kept thinking ‘I am going to deal with this. I just want to go home. I am proud that I tried but I am done.”

Over the next few weeks it became pubic knowledge that America’s first Uterine Transplant had failed but it is not public knowledge that Lindsey faced further

LMFAM

“When I woke up from the emergency surgery, my mom and sister had flown in – I had no idea they would be there.”

challenges. On the day she was due to be discharged from hospital she began feeling  dizzy and fell in and out of consciousness. Lindsey then goes on to share the moment she considers the most life changing of them all as she recalls, “I was rushed to emergency. I just thought, what is going on?. But I knew, it wasn’t my time.” A burst artery had restricted blood flow to her left leg. If the condition had been caught any later her leg may have needed to be amputated.

Today, Lindsey has, physically, recovered from the ordeal but how has she coped with the emotional trauma? “I think I would probably would have been more heartbroken [if I wasn’t already a mother]’ she says, “I am very blessed to have three boys – I don’t take this lightly – they are my life. However, there are days, even now, I think, they would now be prepping for embryo transfer. But, how amazing that I get to be a mom. We do see other transplants fail and surgeries not work and we see other surgeries be of huge risk but we don’t hold those back from a patients choice.”

Has science fiction become a new reality for the infertile? Now, the ground breaking procedure is set to change the lives of women worldwide, as surgical teams across the globe continue to undertake this cutting-edge procedure, which will change the future of women who suffer from MRKH. This clinical break-through has seen five women deliver healthy babies, with one giving birth twice. Two more pregnancies are ongoing and expected to deliver early summer 2017.

What advice does Lindsey have for other women with her condition? “I am not just my diagnosis,” she says, “I am a person who has hopes and dreams and not just someone who does not have a uterus. Now, I am older I can tell my 16 year old self you are a woman, this diagnosis does not define your womanhood. The inability to carry a child is heartbreaking. Every woman has the choice in how she chooses to build her family. ”

Lindsey continues to live a full and happy life with her three adopted boys and is currently fostering two babies What is next for biological children of their own? “We still have six embryos which were intended for the Uterine Transplant transfer, so we have those should we choose to move forward with surrogacy. My motherhood journey is not quite over – in fact, it will never be over.”

The Global MRKH organisation does not advocate for or against regarding this procedure, however we do believe in choice and Lindsey is a gracious and fierce advocate in joining this mission. A global team of pioneers and patient advocates continue to explore this ground-breaking procedure and as we can see, in spite of complications, the care of the patient, of Lindsey, was always maintained. Our eyes are open wide for what is next for the unique discovery of assisted fertility and may women with MRKH, continue to believe and have hope – as women first, patients second.

With much gratitude to Lindsey, for her honest, humble and courageous voice; a true ambassador for the future of MRKH support and awareness.

With thanks to  my dear friend and Editor of this article, Amy Molloy. Without your friendship and brilliant ‘writer’s eye’, I couldn’t do life without you.

With boundless love to the MRKH community.

-Ally Hensley

Co-creator: Global MRKH and Sisters for Love MRKH Foundation (Australia)

EXCLUSIVE! Against the odds: Meet the woman behind America’s first Uterine Transplant

Full Interview with Lindsey McFarland

Coming Soon!

This picture was taken moments before an international press conference, announcing America’s First Uterus Transplant had been performed by a team of Cleveland Clinic Transplant and Gynecological surgeons. Two hours later, Lindsey was rushed into the operating room following medical complications where the following morning, she discovered the uterus had to be removed.

Lindsey, a mother of three adopted boys tells Global MRKH Co-Founder, Ally Hensley, not only what happened that day- but what goes through the mind of a woman with MRKH when faced with a pioneering procedure. At the heart of medical conversations (and debates) worldwide, Uterine Transplants can be polarising. This interview goes beyond the surface, and tells of the heartache, motivations and moments that Lindsey experienced, not just as the first uterus transplant patient in America but also as a woman with the hope of carrying a pregnancy she always dreamed of.

‘Elizabeth, Just 16’- The perfect story of an imperfect MRKH diagnosis

This made my absolute day, “Cecilia Paul has agreed to an exclusive interview Ally, from the first international MRKH support group to author. Good luck!” wrote Cecilia’s PR Manager at Clink Street Publishing, London, UK. However, this interview shortly became an insightful and extraordinary exchange between a woman who has spent her life caring and treating women with this unique diagnosis and a woman who has not only been treated and cared for when diagnosed, but transformed this experience into a life of advocacy and global collaborations for support accessibility.

meCecilia, a woman who’s insight, compassion and understanding of MRKH brought the condition to life with an intricacy and empathy rarely seen in related literature and various publications written over the years. Elizabeth, Just 16 not only tells the story of a young woman’s first year following the life-changing day of diagnosis, but also intelligently untangles the obstacles of identity and sexuality. If there were ever to be a ‘perfect’ explanation of vaginal dilation, Cecilia has done it!There are no pre-requisites when reading this book – just a tissue, a handful of compassion and a belief that women are beautiful way beyond the realms of their anatomy. If anything, more beauty exists in the modest and humble fierceness that harbors in a woman with the condition, MRKH. Just like Elizabeth, Just 16.  –  Ally Hensley

 

Cecilia, clearly your involvement in treating those with MRKH has made a significant impact. What lead you to the next step of wanting to write a book?

Physical pain you can recover from; however mental pain is harder to overcome. This book was not written for those just recently diagnosed, but to all women with MRKH. I am reaching out to women where support may have not been available when diagnosed, possibly ten plus years ago – but you ladies, its you ladies who also need all that support now. When I worked in London, I met women from all different backgrounds and heard so many different diagnosis stories, and yet there was so much common ground and similarities, which I hope everyone can identify with when reading my book, Elizabeth, Just 16. Thankfully gynecologists today are more in the ‘know’, fortunately, with the existence of the internet but there is still a way to go with awareness. I would love to believe that everyone receives the appropriate care and I hope through the characters, Elizabeth and Melanie, people see what help and seeking help can do, if women know where to look.  I want to convey this in the novel however the last thing I want is for people to be transported back ‘there’- I want, simply to offer hope, where people can empathise and identify- if they can.

Elizabeth, Just 16 offers great insight into the early years of an MRKH Diagnosis. Cecilia, can you explain how MKRH has played a role in your life?

I worked within a specialist Gynecology team treating women with MRKH. I have worked with MRKH women all my working career in England. Now retired, I am so very inspired to write the story of a young girl with MRKH, and more importantly, bring awareness and understanding so the most appropriate and holistic support can be offered.

There are many common terms a woman will use when identifying how MRKH makes her feel. I lost count at the use of the words ‘freak,’ ‘abnormal’,  and ‘embarrassed.’ This is very accurate indeed. Why do you believe these words are so universally repeated against the MRKH diagnosis?

 I have heard it so many times before. I always felt you were being so unkind to yourselves, however there is so much magnitude to the gravity of the physiological impact MRKH can have on a girl. This book shows how much MRKH can affect a woman like yourself. MKRH is not a life-threatening condition; however I’ve known women to constantly compare themselves to diseases which are life threatening to feel better about themselves, to find context. I found this so very sad. Women should not have to compare themselves to life-threatening diseases to feel better about themselves! Women with MRKH are not alone. It just doesn’t get talked about openly; it gets held as a secret, and that’s why holistic management through the right centre is important and why support groups are so important.

Jan, Elizabeth’s mother, feels incredibly guilty. However, this is never openly shared. Mothers of those with MRKH often feel a huge responsibility, often leading to immense guilt, weighting additional strain on mother-daughter relationship. What is your advice to a mother of a girl with MRKH?

Irrespective of what they ‘know’ about MRKH, as mother, they always feel guilty for what they have ‘done’ to their daughters. Intelligence doesn’t come into it. If they take the blame it may lessen the guilt. Mothers alike need to find their own support groups and talking to other mothers to overcome this guilt. It is extremely important that they need to treat their daughters ‘normally.’ If they treat them with ‘kid gloves,’ it irritates their daughters further, thus validating their abnormality. Mothers should simply treat daughters as they would normally. Instigate the difficult conversation with, “let’s talk about it?”.  Daughters protect their mothers by not talking and then feelings are not expressed and become suppressed! This alienates the daughters even more from the whole family and then family dynamic become superficial. No, I encourage people to break the barriers and move forward by talking. And especially, don’t let their daughters talk down or be rude, as boundaries will disappear. Rudeness cannot become normal! My last bit of advice, get upset together!

Elizabeth visits an MRKH Centre in England as part of the health system referral system. There she meets, Lucy (Specialist Nurse) and Anne (Psychologist). They play a huge part in answering the questions Elizabeth and her family have, which is a wonderful resource and comfort to them all. Why is such qualified expertise at the point of diagnosis so vital to a young girl with MRKH?

MRKH is not just a condition where you treat just one point. Firstly, you treat the psychological aspects and then the second, the correction of the undeveloped vagina. If you do not have a whole a team who understands the management of this condition, both points will not get addressed. Same applies to when understanding the women’s need to enter treatment. If you have someone just ‘willing to try,’ it’s not good enough. You need to help and support a woman all the way to help believe she can do it and complete treatment! I’ve seen many women so badly damaged, some do not come and see me until their 30’s and 40’s, so at this stage, they have lost optimum fertility age and that’s even worse. Centres are improving on patient care but funding is a huge draw back – so doctors would refer to local GP’s. However, there no specialist knowledge or better management plans. This is why need awareness! The medical professionals are doing the best they can – but it’s a long road, but we are on it.

The relationship between Elizabeth and Lucy is a trusting and safe one – in essence Lucy plays a role of friend and counsellor in addition to guiding Elizabeth through vaginal dilatory therapy. Dilatory therapy is a difficult process and this was one of the best descriptions of the process I have ever read – what was your experience of this treatment through the eyes of a nurse?

It’s a terrifying process. The pure innocence already in existence makes it all the harder. As a specialist in the MRKH field assisting dilatory therapy, I needed to be as explicit as possible without being condescending. MRKH women don’t have periods, or know what sanitary pads are – so the whole world is so unknown. Why wouldn’t this be just as hard? The big thing to start with is the underdeveloped vagina. It becomes such a shameful aspect, but once they are through the process of the treatment, it offers a sense of ‘I am worthy.’ It’s not about sex. It’s about being a desirable female. However, in a loving relationship it will feel amazing. If you try sex perhaps outside of that, women feel hugely let down by the experience. So, wait until there is trust and respect – it will be an entirely different experience!

Tom, Elizabeth’s secondary school boyfriend shows great maturity and compassion when learning that she was born with the congenital condition. The role of a partner is so important and influential in a woman’s journey with MRKH. What is your advice to a perspective partner or boyfriend of a girl with MRKH?

I think a man’s role is crucial. Women are desperate to know how or what to say when they meet someone special and how to disclose their diagnosis – it’s very difficult. They wanted me to tell them the exact script, but as a third party I can only give advice – everyone is at a different stage of their relationship. I think it’s good to bring a boyfriend in to see a specialist with you if you can. The best thing is to be open and jointly understanding. Being open and being offered a chance to ask questions actually helps in building the relationship. I have known many boyfriends see this as reason to see the woman that they are with to be even more special. To me, you all have a place in my heart- you are all special.

I felt Elizabeth had a very supportive family and younger sister and was referred to an excellent centre equipped to diagnose MRKH and treat it excellently. However, as we know this is not always the case on both parts. Melanie was introduced as a young girl with a very different story. Melanie, also diagnosed with MRKH experienced a very difficult relationship with her mother, was mentioned as a self-harmer, and unlike Elizabeth who was incredibly eager to start and complete dilatory therapy, avoided the task and was of course very fearful and demotivated to carry out her daily treatments. How can we truly identify and help women who do not have access to a support network in the form of family or medical intervention like Lucy and Anne?

If a woman doesn’t have access to a support group meeting – try and find one perhaps online to start with. You don’t need to explain how you feel, so perhaps MRKH women can act as mentors and then join a woman to a support group meeting. Talking about it simply can start the process of finding courage. Sadly, a lot of people are more like the character Melanie than Elizabeth. Some women are so lucky and some aren’t – you struggle. You can’t get on with your life with this thing ‘hanging’ over you. Support meetings can be a reminder of painful times but by to them, a woman is able to identify with others and this is the start of the process to acceptance. I always remember the feeling as a meeting was about to start, and it was filled with butterflies. Sometimes, by confronting the hardest things you in turn accept them.

We know there is no cure for MRKH. Both adoption and surrogacy, even uterine transplants were discussed as family planning options. What is your advice to a young women when learning of the reality that is infertility issues?

With MRKH, the inability to bear children is devastating. Seeing pregnant women or women with children is so very hard. We can help you but it would not be helpful if we put you in a bubble. Turn a magazine cover and you will see pregnant women –there is no escape but do not hide from it. Seek more support and try and research the options that you think would work for you. In a sense, knowing earlier on, allows more time to deem the options that are right for you. Save the money and emotionally prepare. A lot of couples discover infertility at the point of trying – that too is very hard. So, use the time to your advantage if this is now your reality.

When reading Elizabeth Just 16, I was transported back to my 16 year old self, ultimately crying at the end of the last chapter when reading your kind words “be proud of the person you are, because you are truly beautiful and the nicest people, I have ever known.” Why do you believe this to be your perception of women with MRKH?

There is a beautiful uniqueness with MRKH. It’s your pure innocence about everything, every day things. Sometimes you have a distorted version or perception of certain things because you think it’s about you and your MRKH. However, because you can’t talk to people about it, you don’t always have a way of knowing what’s true. Your innocence, your pureness is stunning. You are really genuine people and I think that this always comes through. You have no expectations; sure you have lots of dreams but you are so grateful for what you have. Some people have too much, and they become greedy. They can be beautiful but not always beautiful people. I have loved every minute with you all – you are beautiful and you should be proud of it.

Thank you to Cecilia Paul and Clink Street Publishing from the Founders of Global MRKH and the women all over the world who feel slightly less alone.

Available for purchase online!

 

 

 

Global MRKH Founders C

The Mission of Global MRKH is to improve the health and wellbeing for all who are touched by MRKH. Global MRKH is an international collective of Health Care Specialists, Researchers and Advocacy groups dedicated to improving patient care, biomedical research and the psychosocial needs of affected individuals and family members.

The Condition called Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome manifests between weeks 5 to 18 of gestation and results in incomplete Müllerian (female reproductive tract) development. Clinically, MRKH is often diagnosed as Mullerian Aplasia/Agenesis, Uterine Agenesis, Vaginal Agenesis and/or congenital absence of uterus and vagina (CAUV). Aplasia means failure of an organ to develop or functional normally, while Agenesis means failure of an organ to develop during embryogenesis. In some countries, MRKH is also called Rokitansky Syndrome, Küster-Hauser Syndrome or Rokitansky-Küster-Hauser Syndrome.

The Founders of the Global MRKH are Alison Hensley, Amy C. Lossie, PhD, Christina Ruth and Jaqi Quinlan. The founders act as independent members of Global MRKH, forming the first official international consortium of MRKH organisation leaders, community representatives, health care professionals and adults who have been diagnosed with MRKH.

The Administration of Global MRKH is shared equally by the Sisters for Love MRKH Foundation (SFL) and the Beautiful You MRKH Foundation, Inc. (BYMRKH), who jointly established Global MRKH on 1 June, 2015. Sisters for Love MRKH Foundation, founded by Alison Hensley and Jaqi Quinlan, is based in Australia. The Beautiful You MRKH Foundation, founded by Amy C. Lossie, PhD and Christina Ruth, is a 501(c)(3) charity based in the United States.

The Goals of Global MRKH are to:

Provide a forum where nominated members from standalone MRKH foundations, medical institutions and research groups share ideas and best practices to advance support and awareness initiatives; improve health care and treatment options; and promote research across the global MRKH community.

Further biomedical research of MRKH, including supporting studies that address: 1. Well-being and emotional support; 2. Psychological and psychosocial outcomes; 3. Potential causes; and 4. Treatment options.

Coordinate a global platform to ensure the highest standards of care for research studies and clinical trials based on local and international guidelines.

Organize a panel of senior-level members dedicated to addressing the goals and objectives of Global MRKH, whereby members must fulfill selection criteria to avoid national duplication and repetition amongst the MRKH community.

Raise funds collaboratively through agreed activities and promotional events, whereby all council members vote in accordance with the Global MRKH guidelines, including external grants and/or awards from supporting organisations to ensure the ongoing progress and future development of Global MKRH objectives, goals and visions.

The vision of Global MRKH is to foster collaboration amongst clinicians, psychologists, researchers and patient advocates to: 1. Provide support to those diagnosed with MRKH; 2. Increase  awareness of MRKH; and 3. Improve outcomes for all who are affected by MRKH.

We ensure that the official support networks represented by the Global MRKH founders are sustainable in representing this unique community. In addition, Global MRKH will remain responsible and neutral in all matters raised by the media and our community. As key representatives of various MRKH constituents, members pledge to use evidence-based medicine for all matters concerning MRKH Syndrome both nationally and internationally.

The founders- Global MRKH