Created: Tuesday, 26 May 2020 17:38
Global MRKH is so excited to announce our ‘Global Goes Digital Event Series! Save The Date: Saturday 20th June - 7.45pm GMT+1
Our global community, which includes MRKH Connect, is no stranger to coming together online while being so far apart, but we know how much people love having the chance to connect at in-person meetings. In light of so many cancelled events because of COVID-19, and as part of the Global MRKH community we are launching Goes Digital to bring these events to you online.
This event will be hosted via a virtual platform! In planning this event, we have tried to ensure the timing of this event remains inclusive to as many time-zones as possible! Global Goes Digital will commence at 7.45pm LONDON TIME (GMT+1) on Saturday 20th June, so please make sure you adjust this start time to synchronise with your time-zone when registering! Registration is now open and available here https://www.eventbrite.com.au/e/global-mrkh-goes-digital-tickets-106172615150
You also have the chance to be involved too! We will share some of your MRKH stories during the event, as we believe at the heart of our community are the stories that we tell. You will have the opportunity to tell the world what MRKH has meant to you personally and you will have a platform to spread awareness through your individual lens in a short 60 second submission. Our goal is to feature this short video submission during the event, to connect with and digital audience and expose the diverse experiences that accompany an MRKH diagnosis in all corners of the world. You will represent those who cannot represent themselves.
The Application Process: If you are interested in being featured in the Global Goes Digital video submissions, please take some time to review the process below. We encourage anyone with MRKH who is interested to submit an expression of interest accompanied by a 60 second video file to the G
lobal MRKH Facebook page as a private message.
To reflect the global and diverse nature of MRKH, we encourage people from all backgrounds to submit an application, including those from countries and cultural backgrounds which may often be under represented. Everyone’s experience and background is welcomed and valued.Your submission must include the following details:
your full name, location, age along with a one minute recorded video in response to the following question: My experience of MRKH in my country has been?
Submissions are due by Saturday 6th June 2020. You will be notified of the outcome of your submission by Tuesday 9th June 2020.If you are selected, you will be asked to sign a talent release and consent form.Note: We anticipate a high volume of submissions so at this stage we have not capped our number of entries as want to tell every story out there.
We hope this project and feature at the event may lead to future projects with more women!We thank you for your support and bravery. Global MRKH is aware that participating in the application could cause an emotional response and therefore, we recommend you consider informing a close family member or friend within your support network prior to participating in the practical component of this submission.
Furthermore, there is a chance that someone you know may see this film. Please ensure emotional safety at all times.
Created: Monday, 25 May 2020 17:20
Finding out as a teenager you can't carry your own child hits you in a way that's so difficult to comprehend and very hard to explain. You aren't thinking about having a family, yet it brings it to the front of our minds at a time we are dealing with the fact we are still a kid ourselves
Our voices this week share how receiving their diagnosis changed (or not) their thoughts about having children and the grief it evokes. How what we learn in school about our bodies suddenly didnt seem to relate to us leaving us feeling isolated and lost.
Many also reflect on how they wish they knew then what they do now, that there ARE options and whilst our route to motherhood will be different than most, it is no less possible. Something we explore more next week!
Created: Monday, 25 May 2020 17:18
Choosing whether or not to have a family and being faced with a perhaps long daunting journey to one, is not easy.
As anyone suffering with infertility knows, it is a heartbreaking, emotional, stressful, relationship testing journey that doesn't always have a happy ending. Yet those that do follow a path to having a family would often not trade the chance for anything.
For some this can also lead to childless lives. Either taking the decision to do so or their journey leads them there.
Listen to our voices this week talking about their experiences across adoption, IVF surrogacy, womb transplants and living childless and happy. .
But remember there is always hope, love and support along the way ❤
Created: Sunday, 17 May 2020 12:38
Sharing your diagnosis is a very personal thing. There is no right or wrong way to do it. No magic formula. But we all know that bottling up our feelings is not going to help in the long run. Whether you should tell people and what you tell them is up to you. You control the message that you share.
Sharing helps ease the burden, helps you feel supported but it can make us feel scared, embarrassed and stir up emotions we find it hard to face. Whether you tell 1 person or the whole world is totally your prerogative. On 10th May we shared our voices talking about some of their experiences of telling friends and partners. How their sharing has changed over time and what they have learnt from the experience
Never feel pressured to share but do feel comfort that there is a community that understands and that true friends, family and partners will only ever be supportive
Created: Monday, 04 May 2020 15:41
As we reach the halfway mark in our audio series, what better than to focus on Coping, something so very much in the forefront of our minds right now given the current situation.
There is no right way to cope, no quick solution to make everything better. This is even more important right now as staying home can leave us even more uncertain of ourselves.
Finding what works for you to start to come to terms and accept your diagnosis takes time. Our often destructive 'coping' mechanisms following diagnosis are reactive and totally understandable but there are safe coping mechanisms that can help us grow to live with, understand and work to come to terms with MRKH
Our brilliant voices share their thoughts on coping, what works for them, what didnt work for them and some top tips for us all to keep in mind. These are real women with real experiences and we thank them all for being so open.
Created: Wednesday, 29 April 2020 17:47
As a woman with #mrkh the reality of not being able to carry your own child is one thing however the fact that in many cases it will also require some form of dilation or surgery to extend our typically shortened vaginal tract is a difficult concept to get our heads around.
The feelings of embarrassment, pain, sadness and general disillusionment of our own sexuality are challenged yet at the same time we are 'making' a part of our body. We are making our vaginas which is also pretty cool. This episode, aired on 26th April, shares the experiences of women who have been through both surgery and dilation whilst also providing advice and top tips for those considering or soon to embark on that next step in their MRKH journey.
Something positive can come out of something negative. Sometimes we just have to be patient and normalising the discussion is one step to know we are not alone and support is out there to help us through it.
Created: Wednesday, 29 April 2020 17:43
Grief is real, its raw. The first year after diagnosis is a mix of jumbled emotions; sadness, anger, anxiety, frustration. This is Episode 3 of #letsconnect and as #nationalinfertilityawarenessweek kicks off today we want to mark it by highlighting the real struggle being told you have MRKH, often in your teenage years, can have on your mental health. It was released on 19th April 2020.
It can be hard to find positives in our early experiences but the strength of these experiences show the downs and ups of emotions we are going through or have been through during this time.
Whilst they are so emotive they also show strength. Strength to share experiences, strength to support others, strength to raise awareness
This is a bit longer than previous but these experiences are so powerful we had to share as much as possible.
Created: Wednesday, 29 April 2020 17:40
Sharing our experiences helps us to find comfort in each other and ourselves. It helps us to realise we are not alone. Episode 2 explores this from the women who have lived this and have a story to share. This Episode was released on 12th April 2020.
Whether our voices are just for us or something we want to share. At the end of the day there is no right way to feel, no requirement to shout out. Sometimes reliving them can make us feel sad but they also show courage and positivity. Something we will see more of as we continue through the #letsconnect series. We will touch on challenging times as well as finding those silver linings that have brought us strength and joy. These voices share the start of their MRKH journey with you. They are real women. Their stories are unique but in many ways we can find comfort in their experiences and how they show similarities to our own.
Living with MRKH is not easy. Accepting or becoming content with it is not a quick process but know that it can be positive and we can lead full and happy lives even if it maybe looks a little different to what we imagined.
Thank you so much to all those participating, following, sharing and liking ❤. We love you all.
Created: Wednesday, 29 April 2020 17:36
Episode 1 of Let's Connect was released on 9th April 2020. We are delighted to introduce these wonderful and brave women who are sharing their stories to raise awareness of MRKH.
Join us over the next few weeks as we share our collective experiences of what it's like to be diagnosed and live with MRKH from the voices of those doing just that. We salute you ❤
Created: Wednesday, 22 April 2020 21:41
MRKH Connect are proud to have launched #letsonnect. This campaign designed specifically for social media is aimed at raising awareness of MRKH through sharing and connecting the voices and experiences of those who live and breathe MRKH every day. Women at different ages and stages of their MRKH journey come together to share their experiences. We are all unique, with different stories, and we want to celebrate that!
So we have been interviewing some of you, on your experiences, across different aspects of MRKH. These short sound bites are being shared across social media to raise awareness of MRKH, empower our community and highlight the value of connection to helping those with MRKH finding the support needed. These will also be available of course on our new website where we hope to expand on these sound bites further through a range of media but for now we really hope you enjoy the episodes and the strength and power of the voices, despite the grief they also show, to share these stories publicly.
You are not alone.
We have 3 episodes live with new episodes released every weekend and the videos are published on our social media - we are @mrkhconnect across platforms
Created: Sunday, 05 April 2020 13:49
It's taken us a while to post this as we have been a little busy at MRKH Connect HQ with a number of exciting changes and developments. We have a new team and we are delighted to let you know that our new website will be ready very soon!
In 2019, Kelly and Janet, our founders, decided to take a step back from the charity they set up in 2014. They handed over the reins to Charlie Bishop. Charlie has been involved with MRKH Connect for many years both as a fundraiser and as a Trustee. Meeting Kelly just after MRKH Connect was founded, Charlie has always been keen to give more back to the growing and international MRKH community we now have. With this new opportunity, Charlie and her new team of Trustees (Jen, Shelley, Michelle, Adrienne and Ali), are relaunching a bigger, better and more informative MRKH Connect, whilst building on the great basis and the foundation stone of MRKH Connect which has always been its website, forum and interactive map.
We look forward to introducing the team to you very soon and continue to provide updates across social media (we are @mrkhconnect across platforms). Our new website is being developed in parallel and whilst we know our current website is quite dated and not quite as functional in places as we want it to be, please bear with us, the new website will be worth waiting for! The new site will make it easier and simpler to make those ever important connections, friendships whilst providing, and receiving support.
MRKH Connect is for the community and we look forward to sharing the ways you can not only be involved in, but be part of, and truly have you say in what we do for the community
Feel free to email us or contact us on social media, we would love to hear from you!
Charlie and the MRKH Connect team
Created: Friday, 29 March 2019 07:31
There are times like these that we are reminded of a heartache even more prominently when the rest of the country is celebrating something that we don't have, desperately want or may never have. Charlie, one of our trustees, was asked to write a blog on this subject and by Fertility Network UK as part of their #survivingmothersday campaign. Her article, linked below, takes us through her own experiences on how she deals with what can be a challenging day for any with fertility issues.
Here is a taster...
The Fourth Sunday of Lent seems like a rather innocuous day by all accounts and for many, particularly those who are not religious would mean a day of very little significance.
However, that day is also in the UK more commonly known as Mother’s Day although its original meaning, at least in the UK, was not specific to our own mothers at all but to people returning to their ‘Mother church’ in lent.
It was commercialised by the Americans in the early 20th century although they, like many others hold ‘Mother’s Day’ on a completely different day (or days) and it is not closely related to the church in the same way it is in the UK.
Suddenly that day, as innocuous as it originally sounded, starts to bring a sense of dread, sadness and pain to many.
Mother’s Day invokes a day of celebration for so many yet for others highlights something we may have lost, may have always wanted, may never have and remind us all too emphatically of our own struggle.
Everyone deals with Mother’s Day differently and there is no right or wrong way to handle it.
Ever since I was a little girl I have always remembered Mother’s Day fondly. We would go to church and my brother and I, along with the other children of the congregation, would race to the front of the church, at the vicar’s request, and pick up a small posy of daffodils for our mums. Always wrapped in a little bit of foil to stop the water dripping everywhere. My mum standing proudly with a smile on her face as she received them.
Read the full article here: Daffodil Posies
Created: Wednesday, 13 June 2018 18:31
This is an amazing advancement for those with MRKH in the UK following on from the success of the trials in Sweden. It has been documented in the UK media that at least one of the recipients has MRKH! Even though this may only at this stage immediately effect up to 3 people, the overall success of the trial will have an ongoing impact for those with MRKH and other conditions which make it impossible to carry their own child naturally. Science is amazing!!!
A subset of the article from the BBC is included below, please follow the link for the whole article!
The surgeon planning to do the first womb transplant in the UK says he hopes to carry out the first operations "before the end of 2018".
Mr Richard Smith, clinical lead at the charity Womb Transplant UK, also said that they plan to use living donors.
In 2015, approval was given for 10 womb transplants in the UK, but these were from deceased donors, whose hearts are still beating.
Now the team plans to use both live and cadaveric donors.
Mr Smith, a consultant gynaecologist at Queen Charlotte's and Chelsea Hospital in London, said this was because the procedure to retrieve a womb from a living donor was now simpler and safer, with the surgery time cut from 12 to four hours.
Around 750 women in the UK have approached the team to enquire about transplantation.
Womb Transplant UK says it has enough funds to pay for three transplants but will need hundreds of thousands of pounds more to complete a total of 15 transplants - five of these with living, related donors.
Around 6,000 women in the UK were born without a womb, while others lose their uterus to cancer.
At present, their only chance of having a genetically-related child is through surrogacy.
A global review of womb transplants has found that the procedure is a "major advance" but requires strictly controlled clinical trials.
Souce: First UK womb transplant 'by end of 2018' - 5th June 2018 - https://www.bbc.com/news/health-44360786
Created: Monday, 30 April 2018 20:40
MRKH Connect is pleased to announce that Jessica Hearne has been awarded a travel and accommodation sponsorship to attend the May 12th MRKH Conference at QCCH. We are so thankful to everyone who has fundraised and donated - it is because of generous people like you that MRKH Connect is able to help people attend these conferences and get the chance to meet women in similar situations.
Congratulations, Jessica! We hope you gain a lot from the conference and are so glad that we could help make this possible for you!
Created: Sunday, 25 February 2018 21:45
It's that time of year again ... The annual support group at the Queen Charlotte's and Chelsea Hospital, London on Saturday 12th May.
If anyone has any questions then please feel free to contact us! We ask that the forms are sent back to us by Saturday 7th April at the latest, and the winner/s will be announced on Saturday 14th April. This will give you enough time to arrange transport and/ or accommodation if you are successful!
Download the word document here - MRKH Connect Sponsorship Form
Download the pdf document here - MRKH Connect Sponsorship Form
Created: Tuesday, 30 January 2018 07:33
The Sisters for Love MRKH Foundation team is COMING TO YOU. Experience the power of face to face connection and join one of the SFL Team on Saturday 10th February 2018 across FOUR countries as SEVEN women, on ONE day will create an international roadshow and social event!
(Unfortunately, due to unforeseen circumstances please see changes to the original schedule):
Jodie @ 1pm | WTC Wharf - Melbourne AUS
Kelsey @ 3pm | Perth AUS
Jaqi & Ally @ 4pm | Darling Harbour - Sydney AUS
Sam @ 5pm | Dunedin New Zealand
Jacqui @ 3pm | Southampton UK - Changed to Sunday 11th February (local time)
Kristen @ 5pm | Seattle Washington USA - Cancelled
If you are coming to Sydney, I will personally email you the venue shortly. For other locations, your ambassador will be in touch soon!
-Ally and Jaqi xo
Created: Wednesday, 27 September 2017 06:57
Our newest trustee Charlie has been busy training hard this year for 2 epic challenges to raise money for MRKH Connect. The first, completed in May was to walk 100km from London to Brighton which she did in 22 hours 9 minutes and the second was to cycle from where she lives to Brighton and back and back again totally 132 miles in 13 hours 48 minutes.
She overcame some pretty awkward injuries for both challenges such as a huge blister on her ankle before the walk and falling off her bike at speed on a training ride. The second particularly bumping her confidence she was determined to continue as we knew is in her character.
She has now raised just under £1,500 this year for MRKH through JustGiving and direct MRKH Connect donations and we couldn't be prouder. Well done Charlie, thank you for all that you do.
We also hope that now she has a well deserved rest! Xx
Created: Saturday, 15 April 2017 11:52
The MRKH Connect team are delighted to welcome Charlie Bishop to the MRKH Connect team joining as our newest trustee! Charlie has been fundraising for us for a while now and behind the scenes has been helping out with the website and by raising awareness through her personal blog and the crazy challenges she sets herself. We asked her to join the team because of her enthusiasm and support for our cause and we think she will be a really great asset as part of the board.
Charlie has written a blog about being asked to be a trustee and the value of the support network for those of us with MRKH - its called Connections to last a lifetime please do check it out if you get a chance
We are really very pleased she said yes!
We asked Charlie a few questions so you can find out some more about her:
What do you do for a living?
I interpret satellite imagery and process it to extract information useful for a range of sectors including Oil and Gas, Mining and Engineering.
How long ago were you diagnosed with MRKH?
I was diagnosed at 17 following a laparoscopy and have been going to the support groups at QCCH ever since (I am now 33)
What inspired you to support MRKH Connect?
In the UK there are a number of groups associated with MRKH but perhaps only one or two charities and this was one that was very close to mine and my friend and challenge partner Jen's heart. Having known Kelly for a while what the site is striving to achieve is what I believe is needed and it does fill a gap not provided elsewhere. I very much look forward to being part of the team now and being part of its future moving forward
Tell us some interesting things we may not know about you?
The list is probably endless - but I am mildly addicted to dry roasted peanuts, I used to hate exercise now I do it almost every day and set myself these bonkers challenges to provide myself some focus and a target, I am the Chairman of a Special Interest Group on Geological Remote Sensing and I am an Associate Editor for a Scientific Journal. I also love Disney, fluffy things and cartoons and according to my boyfriend generally exciteable about pretty much anything which I am sure can be no bad thing! :)
Created: Monday, 13 February 2017 23:48
Launched in December 2016, the Pants Project aims to raise awareness of the reality of fertility issues, as well as raising funds for those affected, by selling pants and jewellery from prestigious designers. As Dolce & Gabbana said, "Lingerie is the maximum expression of a woman's femininity”; so what better way to do this.
On the 14th February 2017, we will be hosting our first Valentine’s Pants Party, where over 90% of the profits raised from our live auction of lingerie and jewellery donated to the project, will go to our charity Fertility Network UK. Because we were given so many donations, we will also be hosting a live online auction, that will run throughout February 2017. We also have an online collection of underwear via our website with 25% of the profits going to our charity.
For further information, check out The Pants Project website by clicking here
Created: Wednesday, 08 February 2017 00:58
2017 MRKH Survery - Brought to you by Beautiful You MRKH, Global MRKH, and Sisters For Love Foundation.
Click HERE to take part in the survey now!
"Thank you for taking the time to share your experiences with us! Your voice will influence new research designed to advance cross-cutting, holistic care for MRKH from clinical, psychosocial, sexual and behavioral perspectives. This survey is part of a new project from the Beautiful You MRKH Foundation, in partnership with Global MRKH and Sisters for Love MRKH Foundation, to improve all aspects of an MRKH diagnosis. This survey is funded by a contract to the Beautiful You MRKH Foundation from the Patient-Centered Outcomes Research Initiative (PCORI)."
Created: Thursday, 15 September 2016 20:04
Remember Charlie one of the girls who walked 100km for MRKH Connect back in May? Well she is at it again, this time hanging up her trainers (just for a short while) and taking part in a charity concert in aid of MRKH Connect and Hospice in the Weald. We are told its been a while since Charlie has sung so she has decided instead to play the flute at this concert, providing a bit of an interlude to the singing! She is pretty nervous about it as she hasn't performed publicly for a few years now but is excited to be doing it and hopefully raising some money at the same time.
We wish her lots of luck and if you are in the area why not go along and show your support? 24th September 2016 at 7:30pm - St Mary's Church, Hadlow, Tonbridge, TN11 0DB
You can also follow what she is up to and her experiences of having MRKH on her blog https://mrkhmakingmymark.wordpress.com/
Created: Wednesday, 21 October 2015 16:23
So excited and proud to announce that Charlie Bishop & Jen Palmer are putting their 'best foot forward' and raising the awareness of MRKH.
Charlie and Jen will be walking 100km to bring awareness to MRKH and to help raise funds for MRKH Connect.
Follow their journey, updates and much more by reading their blog.
Well done ladies. So proud of you!
Follow their journey, updates and much more by reading their blog below!
Created: Saturday, 03 October 2015 13:50
In the last couple of days, the exciting news has spread about the upcoming womb transplants in the UK. For more information, click on the image below to be redirected to Womb Transplant UK's charity page where you can find more information, ways to donate, and help to raise the awareness of MRKH.
Created: Sunday, 05 April 2015 21:45
It's that time of year again ... The annual support group at the Queen Charlotte's and Chelsea Hospital, London on Saturday 16th May.
We would obviously love to help as many of you as we can, but because we are a charity that relies solely on donations and fundraising efforts, and the charity is still in its infancy, this might be a little difficult at the moment! We ask that you take this in to consideration when applying, as this means we might be able to help more of you get the chance to meet your sisters!
If anyone has any questions then please feel free to contact us! We ask that the forms are sent back to us by Friday 24th April at the latest, and the winner/s will be announced on Sunday 26th April. This will give you enough time to arrange transport and/ or accommodation if you are successful!
Download the word document here - MRKH Connect Sponsorship Form
Download the pdf document here - MRKH Connect Sponsorship Form
Created: Sunday, 01 February 2015 16:26
After a few emails back and forth, MRKH Connect is now listed on the Royal College of Obstetricians and Gynaecologists! It is one of our aims to spread the awareness of MRKH, and with our website listed under their patient support section, we hope to bridge the gap between diagnosis and finding readily available support!
Kelly has also joined the Women's Voices Involvement Panel which gives her the chance to use her experience of women’s health services in the UK, to influence the work of the College and the wider women’s health sector. Attending meetings, completing surveys and providing feedback to the RCOG is one step that MRKH Connect has taken to raise the profile of MRKH!
Created: Thursday, 22 January 2015 16:47
I Am That Girl - A community, a support system, and a movement inspiring girls to LOVE, EXPRESS, and BE who they are.
Read Kelly Smith's interview about MRKH Connect and her journey here!
Created: Wednesday, 21 January 2015 13:02
Jaclyn Schultz, winner of Miss Michigan 2013, recently appeared on the CBS show, Survivor. She used her platform to raise awareness about MRKH!
Read the full article here
Created: Tuesday, 30 December 2014 20:53
Thank you to all your generous donations, MRKH Connect was able to host its first sponsorship in November this year. We were able to defray the cost for someone to attend the annual support meeting at Queen Charlotte's and Chelsea hospital in London.
In gratitude, Labello Press will be donating 10% of the retail price of each book sold to MRKH Connect! To find out more, please visit their website - Labello Press
Read our sponsorship winners story here!
Created: Thursday, 18 December 2014 13:10
October 13th saw the release of the first MRKH fiction book, by UK author, Alice Darwin.
"Three women. Three stories. Three secrets." This book is a must read, not only for women with MRKH, but for those who are supporting people with this condition.
You can order the book from Amazon now!
Three women, with three stories of love, hope and childlessness and three secrets that connect them all
"It made me laugh and cry all the way through! I never thought someone could capture the emotions of MRKH so well!"
"I read this book with my best friend and she has a new insight into how this condition affects me. I was never able to put it into words, but thanks to Alice, I didnt have to!"
"I bought this for my daughter after her recent diagnosis. It is comforting to have so much awareness and support out there now. This book answered a lot of or questions and made my daughter feel like she wasn't alone"
Created: Thursday, 18 December 2014 12:52
On 3rd October 2014, the first healthy was baby was born from a uterus transplant!
One year after they transplanted the uterus, which was donated by a family friend, the doctors transferred a single embryo to the new womb,
according to the doctors. The woman became pregnant....
Created: Tuesday, 16 December 2014 13:11
On August 3rd 2014, MRKH Connect held its first fundraiser to celebrate receiving charitable status in the UK and Wales!
We are so grateful to everyone that donated and appreciate all of your support more than you can imagine!
The night was a huge success! We managed to raise nearly £500 and that helped us to keep this website up and running, allowing women all over the world to connect with one another. It also helped us to organise our very first sponsorship - linked with Queen Charlotte's and Chelsea Hospital, London!
We would love to hear from you!
Created: Tuesday, 16 December 2014 13:02
MRKH gets a spot on UK TV show - This Morning! Here I talk about MRKH from a more personal point of view, and how I learnt to deal with my diagnosis.
Click the link to watch the full episode!
Created: Tuesday, 16 December 2014 12:59
I was given the opportunity to share some of my journey with MRKH. In this episode, you can learn about different types of treatments, and the specialist centre in London for MRKH.
Click the link to watch the full episode!