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.
Cecilia, 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.