Something perhaps that is less talked about is the topic of infertility diagnosis. A good point to start would be to understand exactly what it means. Well for us, a general explanation would be infertility is when a couple cannot conceive despite having regular unprotected sex, and I believe it is important to raise awareness on this more. Upon this, I did some research into Google and discovered there were not many articles on the topic, but more formal pieces of information that could seem quite daunting to people. I mean, whenever I search into a diagnosis, those medical websites, although some helpful, can be quite daunting when stats and figures are shoved in your face. So that is not what I want to create; I have wanted to create a safe space for people to come to and read about topics that relate to them or even others they know. This is why I wanted to create Ella Jade, a place for those to come and feel welcome. Where they can relax, discover, and relate to. My purpose has always been to inform and educate on real issues!
Once I delved into further research, I was given the statistic that one in seven people may experience difficulty in conceiving, and when you think about it, that number begins to make you realise that that is at least someone you know in your circle...
There are countless things that can cause infertility, a few examples are:
Lack of regular ovulation – this is when the egg is released inside a woman as part of her monthly cycle
Low quality semen
Blocked or damaged fallopian tubes
Endometriosis – where the tissue that behaves like the lining of the womb is found outside of the womb
Along with this, there are so many other factors that can cause infertility, MRKH, PCOS, low sperm count, thyroid problems etc… and remember there is also the issue of not being able to hold onto a pregnancy, miscarriages and still births etc are all still factors. Use this link to help you https://www.nhs.uk/conditions/infertility/causes/
I was looking for people to come to me and share their stories for others to read, relate to and provide and safe space of reality to my readers. This is where I found contact with Vics Lane, who today is sharing her story on her infertility diagnosis, and more specifically, Mayer-Rokitansky-Küster-Hauser Syndrome, which she was diagnosed with when she was 17. Often referred to as MRKH, the syndrome is a disorder that occurs in 1 in 5000 assigned female at birth (AFAB) and mainly affects the reproductive system. Because of this, it causes the vagina or uterus to be underdeveloped or absent in the body. Affected women do not have periods due to the absent uterus, and the first signs of it is if a women does not start her period when she goes through puberty, although some are diagnosed earlier on due to secondary health issues- heart, hearing, spinal and renal complications occur in those living with MRKH Type 2.
In Vics’ case, she visited the GP just after her 17th birthday, accompanied by her best friend because she had not had her first period, and this started a six month long process of tests, exams and appointments to finally receive the diagnosis, and another year after that to be seen at the specialist clinic in London, at Queen Charlotte and Chelsea Hospital. Due to so many doctors not being aware of the condition, they didn’t know where to send her and, despite her best efforts, some did not listen to her when she said she wanted to be seen by the Queen Charlotte’s team.
She got there eventually, first meeting the team in July 2020, a year after receiving her MRKH diagnosis. Now over two years on from when she was diagnosed, Vics is a writer and also the founder of MRKH Stars, a virtual safe space and support centre for those young and newly diagnosed with Mayer-Rokitansky-Küster-Hauser syndrome, which she now jointly runs with the co-Director of the foundation, TK. The two are global MRKH advocates, and close friends too; united by their MRKH diagnosis, they found support in each other, and now provide support to others in the community too. I’m so grateful she has come onto Ella Jade to share her personal story with you.
How did the diagnosis effect your mental health?
The infertility grief, for me, came a little later, and this was and is so tough and the pain of this never truly goes away. I have bad days every so often where the pain and grief of MRKH is all consuming and I can’t think about anything other than the fact that I’ll never be able to carry the baby I’ve always yearned for. Those days are always tough, but this is mostly manageable now in the sense that I know how to deal with my bad days, and so do the people who love me the most, so we always make it through.
The aspect of MRKH that I have struggled with arguably the most is the trauma I now have surrounding hospitals. It took me six months just to be diagnosed with MRKH, and another year after that to access the right specialist care, being bounced across consultants at different hospitals, this took its toll on my mental health more than the reality of MRKH ever did. But the older I got, and the more ready I felt to start vaginal dilation which includes a hospital stay, I knew I needed to start tapping into the bits of my past that hurt the most. I spent over a year in psychological therapy working through my trauma around hospitals, and am now ready to embark on my journey with dilators; I am on the hospital waiting list at the moment and hope to start this year.
What inspired you to set up your own charity?
When I was first diagnosed with MRKH, I connected with some truly amazing people via social media, they had MRKH like me, and were and still are my biggest form of support. There was one woman I got in touch with, she was a complete stranger to me, and she truly saved my life, and I will forever be grateful to have such an incredible support person in my corner. A few years on and she is still by my side helping me to navigate a life with MRKH.
Once I finally got back on my feet after diagnosis, I wanted to join the group of advocates who once saved me, and I saw a gap in our community for support tailored to newly diagnosed people living with MRKH and thought that’s where the work was needed, and I could be that person. I started off as an advocate, and the foundation cam
e about a year later when I was truly ready to expand my mission to a global community, recognised by people living with MRKH as a support network. Now, I call MRKH Stars the baby I could never carry, it has helped me so much on my healing journey, and having made a friend for life who I now jointly run the foundation with has helped me an unspeakable amount. We are on the journey together, medically, physically and emotionally, and having someone at the same stage as you who just “gets it” and also shares your passion for advocacy really does make all the difference, which is why TK runs a buddy scheme called Shooting Stars within the foundation.
Did you find yourself receiving the correct support?
Medically, no. Not for a while at least. Once I was at the specialist centre, I received help with both my physical health and mental health, and the team have been so incredibly patient with me. Before that, I was being passed around from doctor to doctor all offering different treatments from what they thought they knew was right, some of them I even had to explain MRKH to. It took a year after diagnosis to finally be seen by the specialist team, but so many traumatic memories had taken place by then it took a lot of work to process those memories. My specialist psychologist was and is incredible at her job and has helped me through so much, I just wish I could have received that support sooner.
The peer support from the MRKH community came first, and is something I know I will have forever, I’m so lucky that I was able to access that so early on, they were the ones who held my hand through all of the trauma, even now I’ve been discharged from therapy, the community is still there supporting me through every challenge that comes my way.
My charity work is almost a full-time in itself, we even have an initiative run by my best friend for supporting people who are supporting those living with MRKH. I am a global advocate and share my story with the world, in the hope I can reach the people who need me the most.
But even just by sharing my story, without the charity or with talking to others, just spreading awareness of this diagnosis means I can help to reduce the stigma and taboo surrounding gynaecological health and infertility and make people aware of the diagnosis itself. People don’t have to feel alone with MRKH, there is a whole community out there, and hopefully by doing what I do, less people will have to go through what I did.
You can find Vics’ charity on twitter @MRKHSTARS , Instagram @mrkhstars, and the foundation’s website is www.mrkhstars.com
If you find yourself having these symptoms or would like to know more, please contact your local GP or find more information on the NHS website