Mind Over MRKH

DSD stands for differences in sex development. MRKH is one type of DSD, but there are hundreds of other variations and people with different DSD (AKA Intersex) traits. Listen in to learn a bit about different types of DSD's and check out the resources below to learn more. 

On this episode Ellamae speaks to Gabs and Esme who manage the Instagram community and support page for all types of DSD's called @yourpace.dsd which is managed by U.K. Charity and the most in depth resource for all types of DSD's - DSD Families. 

https://www.dsdfamilies.org/charity 

Gabs has MRKH and Esme has CAIS Complete Androgen Insensitivity Syndrome, they are working to ensure no one with a DSD feels alone and we can't thank these two DSD warriors enough for coming on to share their personal stories. They work they do is so admirable and I am so glad to have had them on the Pod.

Gabs shares what it has been like having a DSD (MRKH Syndrome) and being a black female, she says there has been an additional stigma growing up and lots more representation is needed in the DSD community as to make sure no one feels alone, you must be able to find someone that looks like you so her involvement in advocacy and feeling part of a bigger community after joining with DSD families is so lovely to hear about. Esme shares with us her story of knowing she had a DSD her whole life, she talks about the surgery she had when she was born to growing with confidence as a young girl with CAIS - through relationships, friendships, mental health and more! 

Please note- as I am not a medical expert if I have incorrectly explained anything on this Pod please get in touch [email protected] and please use DSD families website as your medical resource. Our Podcast is to raise awareness, chat informally and ensure no body feels alone but we are not a medical podcast. 

To learn more: 

CAIS https://www.nhs.uk/conditions/androgen-insensitivity-syndrome/

MRKH https://www.mindovermrkh.org/mrkhanatomy https://www.mrkh.org.uk/mrkh.html 

Turners syndrome https://tss.org.uk/ 

Other DSD's: https://www.dsdfamilies.org/charity  

Sponsorship: 

This Podcast is receiving regular sponsorship from our friends and charity MRKH Connect. 

Listen to our full intro here

MRKH Connect is a UK charity designed to connect those with MRKH and provide support to those with MRKH and their families through events, resources and public outreach to raise awareness for MRKH.  Their private Members area provides a safe space for those with MRKH from all over the world to connect and share together in a safe environment and find comfort talking with those who truly understand what having MRKH is like.

 Anri Labuschagne is 23 years old from South Africa and was diagnosed with MRKH in 2018! She is the founder of @mrkhsouthafrica and co-founder of @mrkhpartners! She is currently in her last year of her legal studies while still running the MRKH SA page! Anri is a coffee addict and her  favourite show is friends!

Support our Podcast here mindovermrkh.org - subscribe to our news letter, check out our donations page, free events and shop!

This Podcast is receiving regular sponsorship from our friends and charity MRKH Connect. 

Listen to our full intro here

MRKH Connect is a UK charity designed to connect those with MRKH and provide support to those with MRKH and their families through events, resources and public outreach to raise awareness for MRKH.  Their private Members area provides a safe space for those with MRKH from all over the world to connect and share together in a safe environment and find comfort talking with those who truly understand what having MRKH is like

Welcome to the MRKH Podcast, Mind Over MRKH. MRKH affects 1 in 5000 female births, listen in to learn, connect, and be comforted by the MRKH warriors and community supporters we'll be joined by. We are a creative, resourceful, story telling and self explorative hub for all things Mayer Rokitansky Küster Hauser Syndrome.  Those with this condition have varying underdevelopment of the reproductive system. So born without or with an underdeveloped womb, cervix and vagina, usually ovaries are present and female chromosomes. (But doesn't mean to say everyone with MRKH identifies as a woman)

I'm Ellamae, I'm 29 and I was diagnosed with MRKH at 16. I am the founder and director of Va Va Womb (even though I was born without a womb) and Mind Over MRKH, I am your Podcast Host and producer - joined by MRKH warriors, friends and experts globally- to tell their stories, have their voice heard and ensure the next person diagnosed with MRKH feels less alone in their experiences. We'll be talking all things MRKH from mental health, to dealing with this new diagnosis, sex, relationships,  fertility, living child free or child less, pleasure, self acceptance, vaginal dilating and more. Find out ways you can support the work we do over on mindovermrkh.org including our future magazine, creative events, gift boxes for MRKHers that we aim to package for the next person being diagnosed  and check out our online shop too!

This Podcast is receiving regular sponsorship to keep us going strong  from our wonderful friends and U.K. Charity MRKH Connect, MRKH Connect is a UK charity designed to connect those with MRKH and provide support them and their families through events, resources and public outreach to raise awareness.  Their private Members area provides a safe space for those with MRKH from all over the world to connect and share together in a safe environment and find comfort talking with those who truly understand what having MRKH is like.

We hope as one  big MRKH Family to continue to raise funds collectively to support those diagnosed with this life changing condition that can bring so much pain and so much grief, - we just want you to know that it will also come with a fiercely magical, loyal and loving community of people just like you - you are not alone. We hope this podcast keeps you company. and if you'd like to get involved do get in touch because your story matters.

Sofie Rask Jensen is an MRKH advocate from Denmark on TikTok. Here she hopes to share all aspects of what it’s like to live with MRKH, while also trying to educate people on what MRKH is. She started posting during march of last year and already in may she had two tiktoks go viral. Ever since, she has grown a following of almost 80.000  people wanting to learn more about MRKH. Besides her TikTok, she is also a part of the MRKH stars team as one of their writers and is also part of their Tik Tok.

Note from Mind Over MRKH - SO SORRY LISTENERS I've been away so PLEASE don't worry this is a temporary intro (I wanted to keep the Pod going but haven't been in the company of my trusted mic!

So many improvements are coming as we now have a brand spanking new sponsorship from MRKH Connect which will enable better software for this Pod!

Thanks for our sponsorship MRKH Connect, you ROCK. Donate to MRKH Connect here

Buy a gift for a young person with MRKH in the U.K. here

Contribute directly to Mind Over MRKH and the work we are doing here 

Join the WARRIORSHIP and get post from us!

Check out our MRKH Shop

#mrkhsyndrome #mrkh #infertility

Tech note- Apologies from Ellamae my sound was quite overbearing and we couldn't figure out how to ensure we could increase the volume of the wonderful Janay - so feel free to turn down the volume when I talk and get it as loud as you can for Janay! We will definitely be recording more together.

Insightful, strong-willed, and free spirited are just a few words to describe our next guest, Janay Cook

Janay hails from the original ‘Wakanda’ known affectionately as the college of love and charity: Florida A&M University, where she studied journalism.

She’s an MRKH advocate, former news producer and content strategist. But she considers her greatest accomplishments as being a big sister to her younger brothers, Andre and Desmond.

Diagnosed during her senior year of high school, Janay made a decision to completely educate herself on her condition. Finding few places to learn and connect with women of color who shared her experience, she founded Sistahs Surviving Infertility in 2018.

For the past 13 years, she has used her story to inspire and encourage others to live out their truth.

She's a proud mom of two cats and five plants, but hopes to carry her own children one day.

Janay joins us from Tampa, Florida AND ... today, she's celebrating her MRKHversary! .... 

Wow, 7 episodes! Rest assured when we get to 10, you'll have a chance to feedback on the future of the Pod/Zine! Click here to shop with us and support

FRIENDS ARE JUST LIKE STARS, YOU DON'T ALWAYS SEE THEM BUT THEY'RE ALWAYS THERE! 

Check out our newest episode with the lovely Vics & TK who run @mrkhstars <<< FOLLOW THEM!

Vics is a second year university student, English tutor, MRKH advocate and the founder of MRKH Stars, a peer support network and advocacy group for young and newly diagnosed MRKHers which she founded in April 2021, and now jointly runs with her partner in crime and close friend, Tk. Vics has a passion and a love for literature and writing and, with input from the community around her, is growing this on her journey as an advocate. Vics saw a need for support for MRKHers earlier on in their journey and, inspired by one of her biggest cheerleaders and supporters, Jemma, went onto create MRKH Stars, with the aim of providing young and newly diagnosed MRKHers with the same comfort and support that Jemma provided her with during her own early days of diagnosis.

Tk works full time as a nursery practitioner, as well as studying for her level 3 NVQ. Tk became Co Director of Stars along side her good friend Vics in October. Tk was diagnosed with MRKH two years ago, since her diagnosis she has shared her story through social media, Stars and news articles. Tk wanted to help spread the awareness of MRKH and support those newly diagnosed in their journey. One of the ways Tk does this is by running the Shooting Stars buddy scheme for Stars.

We chat all things stars, being a newly diagnosed MRKHer navigating the world of advocacy and get to know the two lovely people behind this mission.

The biggest message I got from this episode is we really do need to assure people with MRKH when newly diagnosed that THEY ARE NOT ALONE. We all feel alone, we all think we are alone, it's just knowing where to look which can feel utterly daunting- we have all been there. And when you do stumble across that one person, Charity or page you will find that there's so many of us, all ages, all stages, waiting with open arms - which can also feel daunting. Having a mix of different platforms is really shaping the future of our MRKH Community, there's something for everyone!

Don't forget you can leave Vics/TK a Shooting Star emoji to be connected to one of their SHOOTING STARS and find a buddy to talk to.

You can also find people who live near you and plenty of online events (Some a collab between MRKH Stars/Connect/ and us here at Mind) via MRKH Connect, our U.K. Charity with a mission to connect those with MRKH, and depending on where you are in the world there's plenty of other support right here and here.  THAT'S F*ING TEAM WORK.

TRIGGER WARNING- SELF HARM/SWEARING.

I loved speaking to my good friend (who I've only met in the flesh once!) because we prefer to just wing it and take away the filter from our MRKH stories with a truly candid chat.

Be prepared to hear the word vagina 100 times or more and get the secret to protecting your story.

Ally talks about the ingredients to turning pain into Power and tells us why sharing isn't coping

Find Ally over on Global MRKH and her personal account 

Ally Hensley is a writer, speaker, and advocate for women’s health and happiness.

Ally has written for leading publications on mental health, infertility, body positivity, and has become a regular media interviewee, and speaker on how to transform trauma into triumph. Ally works to reduce the stigma surrounding mental health and prompts conversations that matter.

Ally is inspired by real humans, telling real stories and has become an international go-to on how to maximize impact with big ideas, when it comes to tackling taboo head-on. By discovering her own version of self-acceptance, Ally has created a loving relationship with her MRKH diagnosis, a statement that once would have derailed her. Over a decade ago, Ally cofounded Australia's first MRKH organization, and in 2016 launched Global MRKH, a international hub to better understand the global footprint of this life-altering diagnosis.

 In 2021, Ally connected with the Content Crush Co., a Sydney based creative agency launched by best friend and author Amy Molloy. Ally joins a team of copywriters creating brand campaigns and authentic content with household names, emerging start-ups, and budding authors. As a freelance writer, being a digital nomad is her ultimate goal, with big plans for a Bali, Bondi and Berkshire commute.

As a truthteller, Ally defines herself as a realistic, but scrappy dreamer – where fact is essential, and originality is to be absolutely embraced

Listen to the full episode to hear Rima, founder of coaching platform Sumaavi and the Trusted Circle, flip the questions onto Ellamae in true coaching style! 

Rima delves into her teenage years and the feeling of disconnecting from her body, after medical professionals deemed her as research over a human being, a young 16 year old girl needing emotional support but instead being pressured to have sex after surgery. After a lack of teenage support, Rima was offered "Sex therapy" before she'd even had sex, and bottled up a lot of her MRKH feelings for years before slowing connecting with her body and the rest is history- Sumaavi was born and she is helping others thrive and take the next brave steps in their lives. 

Rima Zigaitis. is the founder of Sumaavi and the Trusted Circle which provides coaching, unconditional support, and a way forward to people with MRKH and to the people who love people with MRKH, like parents, partners, and family members. After years of dedicated self-growth, running her own consulting business developing training programs for corporations, she took her skills in adult learning & development and coaching to focus on what really matters - helping people transform their relationship with MRKH to live a full and beautiful life. She created Sumaavi to provide the kind of support that she wish she'd had growing up with MRKH.

Sumaavi's mission is to help you take a step forward in your MRKH journey. With each step, let go of what burdens you, learn to build confidence, and learn to love yourself - MRKH and all!

A candid conversation with friend and encourager, Badia. We talk real life events with MRKH (from bleeding during sex to burying feelings!), a diagnosis story which didn't include the letters "MRKH", being a young black woman with MRKH and Badia's road to joining the Beautiful You MRKH foundation on the board for Diversity and Inclusion, amongst her world of encouraging and cheerleading those around her whilst seeking therapy just last year, as MRKH grief truly can kick in later in life.

I asked Badia what black people and people of colour with MRKH need more of from our community- REPRESENTATION, COMMUNICATION, INFORMATION. Hear more by sitting back and listening to our chat. 

Badia is a Daughter, Sister, Auntie, Cousin, Friend, Author, Founder and so much more.

She is the founder of Sisters Anointed for Encouragement,

CEO of Badia Did It Braids, and in the MRKH world she is on the advisory board for Diversity and Inclusion at the

Beautiful You MRKH Foundation - a fiercely admirable and inspirational advocate in our MRKH community- follow and support Badia using the links below.

https://safeencouragement.com

https://www.beautifulyoumrkh.org

Instagram/Facebook:

https://www.instagram.com/badia.atcherson

https://www.instagram.com/Safeencouragementinc

https://www.instagram.com/Badiadidit

Ellamae interviews the wonderful Charlie Bishop.

Charlie took over as Director of charity MRKH Connect in 2019 building on their strong foundation she, and the team work on numerous activities and initiatives to help connect, raise awareness and work to improve care for all.  Day to day she works as project manager analysing images of the earth taken from space, transferring many of those skills to her work with Connect. Living in north Norway she loves running and hiking.

MRKH Connect has a mission to connect those with MRKH together and to ensure that there is a safe space for all MRKHers to chat and share together whilst also raising awareness publicly. No one with MRKH should feel alone.

Donate here: https://mrkhconnect.co.uk/support-mrkh-connect/

www.mrkhconnect.org

Instagram: @mrkhconnect, @charlieabisbhop

Twitter: @mrkhconnect, charliebishop84