Updated: Mar 23
When I was 17 years old, I had an ultrasound performed after my first gynaecology appointment. When it was completed, I was asked to wait for the doctor in the waiting room for the results. We went into her office where she solemnly said that she believed I had a rare reproductive disorder called MRKH Syndrome. She said that I had to have more testing done and she would refer me to a specialist to be absolutely sure, but from the looks of the ultrasound I didn't have a present uterus. I went into shock. I had so many thoughts and emotions running through my head that they all rumbled together. I didn't understand why this would be happening to me. I felt like I was being punished. I already had so many bad things happen in my life, and now this.
The doctor referred me to a “specialist” here in Connecticut. I had to get multiple tests done prior to my first appointment. I had given vials upon vials of blood to check my oestrogen levels, chromosomes, etc. I then did a radiology test using contrast to check my kidney function. When I went to my first appointment with the specialist, she went over all of the results and did an exam. She verified that I did indeed have MRKH Syndrome. She told me over and over that I was 100% a woman, but I didn't believe it. I couldn't believe it. She then went over the dilation process with me.
I started dilation right away, because I longed to feel like a normal woman, but it was always so incredibly painful, even with the numbing gel that she prescribed. I couldn't handle dilation often, mentally or physically so I didn't. Then maybe 6 months to a year into seeing my specialist regularly, she left, and referred me to Dr Marc Laufer out of Boston Children's Hospital. On his first exam he realized that I also had Lichen Sclerosis another rare disorder, which added to the extreme pain during dilation, because I was basically tearing my skin microscopically repeatedly. So, I did the simple treatment and then began dilation once again. Over time I became extremely disheartened, because it would always get to a point where it felt like I was "hitting a brick wall" as I always described it. However, at that point I was unable to be sexually active so I couldn't understand how I couldn't dilate to a larger size.
I have always struggled with my mental health due to many traumas in my childhood; MRKH only made my mental health less stable. I became very depressed. I hated myself. I did not feel like a woman. I felt like a failure as a woman. On top of all of those feelings dilation made me feel worthless. It was as if I was stripping myself away every single time I dilated. I felt dehumanized. Then one day in 2014 I had a breakdown in Dr Laufer's office, because I wanted surgery to lengthen my vagina knowing dilation was not working for me. However, he told me I wasn't a candidate for his procedure. I was even more devastated than I already had been. I felt utterly broken. I remember it happened the day before the MRKH Conference they hold yearly at Boston Children's and he told me that he thought I would benefit from meeting other women like me and attending the conference. So, my father, his now wife, and myself drove all the way back up to Boston the very next day to attend it. The conference definitely made an impact. For once I felt validated. I felt like I found people who could truly understand what I was going through. It helped me so much. I did still have a lot of the negative feelings at this point, but it helped tremendously. I was already in a private MRKH Group on Facebook, but actually meeting women who can truly relate is something you can't replace. I highly recommend it.
Around 2016 I gave up on dilation completely and gave up any hope that I would ever be able to have a normal sex life. Then one random day I learned about the Neovagina procedure that Dr Miklos and Moore perform in Atlanta, Georgia. I spoke with Dr Moore on the phone and he told me I would be a candidate and explained everything in depth. Later, I repeatedly tried to schedule the procedure, until I found out the cost and that my insurance refused to cover any of it. I knew I could never afford it. My hope once again died and it brought me into one of the deepest depressions I have had. A couple years later on September 5th, 2018 thanks to the help of my family I had the surgery. I had many unexpected struggles post-op, and my healing time took well over the 12 weeks that are normal. My case obviously wasn't typical and that's okay, because it helped me grow as a person. Finally, almost a year and a half later I was ready to have normal sexual intercourse, something I truly thought would never happen, and it was successful! This surgery honestly changed my life. I don't think I'd ever be where I am today with the acceptance of my MRKH diagnosis if I didn't have this procedure. I am so thankful.
When I was first diagnosed, I always left parts out when talking about MRKH, because I didn't accept myself for who I really was. But now, almost 12 years later, I am proud of who I am as a woman, and share my story completely and without fear. I strive to be as open as I can about MRKH and my journey, because I know what it is like to hate yourself because you cannot accept it, and I don't want to see any other woman go through that. I have had so many people in my life who helped me along the way. My Dad has always been my rock through all the twists and turns. As a single father I know how hard it all must've been for him and yet he still did it all without fail. My husband has also played a huge role in helping me find myself again. He has always accepted me for who I am and has stuck by my side through thick and thin. He is a Godsent. My husband and I do not want children so we have decided to be fur parents and love every moment of it. Our fur babies help me so much too.
Wanting to share my story and also be an advocate for the MRKH community led me to MRKH Stars. I joined Stars in July of 2021. I am honoured to be a part of this amazing team. I do many jobs here, basically anything I can do to help. I love writing blog posts and also being a support to anyone who may need it. I am excited to see where this Foundation goes.
As far as my future with MRKH, I just hope to continue growing as a person. I am currently writing a book about my life and also my struggles with my diagnosis in hopes of helping others. I want to show that it is possible to come to terms with MRKH and also live a happy and fulfilled life. My aspiration is to help as many women as I possibly can and make them feel as worthy as they truly are.