Crystal

My journey like any girl with MRKH started with having no period. In 2018, I was 16 years old when I went to my GP, who told me to wait another year. I did. 2019 arrived, but still no period. Many people convinced me that I was probably just a late bloomer, so I would swim when I wanted, wear white clothing, you name it. Crystal was worry free!

In 2020 I went to see my GP for help during Covid. She then proceeded to ask me if I had got my period yet, and when I said no, she was in utter shock and told me I needed to see a gynaecologist as soon as possible, My initial thought was CANCER. We booked the appointment for the 29th July 2020. I never thought that that day would haunt me like it did.

I still remember the appointment like it was yesterday. The gynaecologist looked at me, then my mom, then me again and the first thing she said to us was "is one of you pregnant?" I still laugh at it today because we were there for the TOTAL opposite reason! We told her the situation, she told me to get undressed, change into a rob and take a seat. She told me to relax and that she just wanted to take a look at my vagina. I was extremely nervous. I had never touched myself before, never explored there before; it was the first time I was fully exposed to another individual. She looked at my opening and was completely confused. She then took a tiny but long swap to try and feel for a hole, which made me scream out in pain! It was the most uncomfortable thing I have ever experienced in my life. My gynaecologist’s face said it all - she knew something was not right.

She then did an ultrasound and even more to her surprise, could not see a uterus or ovaries. She told me to get blood tests done and that we needed to come back next week for another examination with a full bladder. I got back to my friend's house and I just cried. I cried because I kept on feeling this swab being pressed into my vagina, cried because of how invaded I felt. I kept feeling the pain of the blood test, the pain of not knowing.I couldn’t sleep for a week because all I could feel and think about was the swab between my legs. I was petrified.

1 week later, I was there again. My bladder was extremely full, painfully so. She did the ultrasound again and still nothing. She told me that I needed to go see a fertility specialist, who did a more advanced scan and still didn’t find anything. She then proceeded to ask if she can take a look at my genital area. My body froze. I was extremely scared. But she did not poke inside, she just looked. We then went back to my gynaecologist, who said that I needed to go for an MRI scan and some more blood tests. I had not eaten, and more bad news and confusion surrounded us. I was in total despair. What on earth was wrong with me? Why was this happening? So many questions, and no answers.

Whilst watching all my friends at school, all I could think about was how happy and unproblematic they all looked whilst I felt like a science experiment. I was not happy, I was not like the other kids, I was not Crystal. I left break early because I could not take it and found a quiet place to just bawl my eyes out. I was breaking down mentally and no one knew. I just wanted an escape.

The day had finally come for my MRI. I was barely coping and there is no greater enemy than the fear of the unknown. My results revealed that I had no uterus or a vagina. It was ironic to me that just before, we were looking at pregnant ladies passing by and I was like “oh no mom, not my turn yet, I am too young". Who knew that day would never happen? After receiving the results, I was so done with sadness that I became hopeful. My whole mind-set was that no God out there brings suffering without joy. I knew there was a rainbow after my storm, I just had to wait for it. I became so humbled by my experience that I started searching for my purpose. A lot of the time, we only search for the answers that we want. But MRKH really is not even a question of why, it is a journey of self-actualisation. When you find the good in what is bad, you find the true meaning of the situation. I could not find a doctor for about year who could help me. During that year, I decided to find me!

Eventually, we did find a person who could help, the only man in the whole of South Africa, a professor who actually knew about MRKH. I was petrified of meeting him. He spoke directly to me, his eyes never breaking contact and spoke to my soul that day, he spoke to my heart longing for answers in which he did have the answers to. He had such a calm aura about him that made me so comfortable. He told me he could help me and that I should not fear anything. He did tell me it was going to be painful, but it is going to be worth it. It would change me and help. He was my guardian angel! My hope was restored. My year of waiting for a miracle had finally ended.

He booked me in for a neovagina surgery, whereby a vagincal canal is created using tissue from your bowels. It was roughly 2 and a half hours long, and I was in hospital for a week. I could not eat or drink for three days and I was put on a drip to provide me with nutrients. It was a long and sore process, but I was so grateful for the experience because it enabled me to do many things. I pushed through it and made the most of my situation. I definitely used not being able to stand too long as an excuse to not do house work. Bonus for me!

The next stage of my journey was dilation. As a virgin, I had never experienced things entering my vagina, so it was scary in the beginning. It was difficult going in at first and there was so much blood, but I pushed through the pain and the discomfort. As I started doing it day and night, it became part of my daily routine. I would definitely say that dilation is mentally challenging. It is not something you want to do, and the thought of having to constantly stop doing things because you need to dilate makes you feel abnormal. During the whole journey, I did feel alone, mostly because I did not know of anyone else who had similar experiences I could learn from. I decided I needed to find help so I went onto Instagram and followed every MRKH page there was! I found Stars and MRKH South Africa and I was greatly supported. I met a beautiful girl from MRKHSA, Anri who coincidentally was treated in the same hospital, with the same doctors as I was going to be dealing with. She called me a week before my surgery, the night before and during my recovery in hospital. I would message her daily asking questions about healing and dilation. I often felt like a tyrant constantly bothering her, however she did not mind at all. She is honestly the most amazing human in the world.

When speaking to Vics (the founder of MRKH Stars), I realised that we shared the same vision - helping others with MRKH and spreading awareness. Reading most of the posts on Stars, I realised joining would connect me to so many amazing women and I so badly wanted to be part of that! Joining Stars has been absolutely amazing! I would say my favourite part has been answering questions from the Q&A. I love answering and helping where I can. I remember not knowing so many things and wanting to know so desperately, so having the chance to answer the Q&A gives me such a hype.

My future plans would definitely be to provide a service where we can help provide girls with financial aid and resources. Many girls especially in rural areas or underdeveloped countries do not have access to treatment, and I want to help like others helped me. I want to make a difference. I want females to feel the confidence I feel knowing I have MRKH. MRKH doesn’t define me, it just makes me even more unique.