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Tori

Updated: Mar 23


Hello all,


My name is Tori! I am from the Windsor Ontario, Canada area. I was born with PKD (Polycystic Kidney Disease) which is a type of kidney disorder. It causes fluid-filled cysts to form on the kidneys. Everything else in my life seemed «normal» though. As I kept getting older, I was waiting and waiting for my period to start like normal girls my age. I’ve always been the small and skinny type, and very active, so I figured it would come later for me because of that. Or so I thought until I hit the age of 15-16 and still hadn’t got my period. My family and I didn’t seem to worry too much, but it became a thing of more and more doctors’ appointments as the months went on to figure out why I still hadn’t got it. No one had the answers and they all kept saying it would come with time. But as time went on it became more and more stressful for me, especially because I wanted to be normal, like all my other girlfriends. Finally, in early 2014, I was 16 almost 17 at the time, I met with another specialist in London, Ontario. After lots of tests, and many trips to Victoria hospital, the specialist I was seeing at the time pulled me and my mom into an exam room one day, where she sat us both down and diagnosed me with MRKH syndrome. Once I heard her say syndrome, my mind blacked out I’m pretty sure because the only other thing I heard from the conversation was you won’t be able to carry your own children. Which was kind of heartbreaking because what little girl doesn’t picture a future life and having children. I loved kids and always had a special connection with them. Me being so young at the time I didn’t fully get what just happened. All I remember was her handing me paperwork explaining everything and asked me if I had any questions. She was saying I’d never get a period and eventually I left the hospital that day more confused than I ever was before. I didn’t think it was really a big deal or would affect my life in any way shape or form, it happened so fast, I blocked a lot of it out.

Eventually I started the dilation process before heading off to college and stuck to it for about 6 months. I did get a bit of progress with it gaining a couple centimeters but, in the end, I stopped because of lack of motivation. For me, even though it did work and there was progress, it was still not enough for me to have that desired enjoyable sex life. I spent the following months after I stopped dilating, getting into awkward situations with guys and pushing them away because I was too scared to accept affection or love and then to tell them my secret and then they end up running away. I was ashamed of who I was, what I had and felt embarrassed.

Soon after, I wanted to explore other treatment methods. After talking to a few other girls that I connected with through those Facebook pages or other social media, I came across a surgery run out of Atlanta Georgia by Dr. Miklos and Moore. We spent a few months after I moved home for the summer from college planning when and how I could do this. No one covers this surgery or does it in Canada with the same amount of success rate. Hearing this, I almost gave up hope. After many phone calls, messages, and emails to Atlanta, I finally had a surgery date July 25th. What the surgery was is they went in laparoscopically. On one side they pumped my tummy with gas so that with the other incisions they made they could use probes to take my protonium and stretch it to make a vaginal canal. I am forever grateful I was able to get this surgery- LIFE CHANGING.

Having a support network is and was very important to me. My family and close friends were my rock through some of the early dark stages of this process. I also would have been lost without those Facebook support pages. Even though it took me a while before I felt comfortable posting, by just reading other posts, I felt less alone in all this.

Once I saw MRKH Stars through social medias, I knew I had to be a part of it. I have grown so much from the beginning of my diagnosis until now. I “came out” about my condition as I like to put it, on social media after attending a MRKH Conference in Michigan and leaving entirely inspired to do more for a community that gave me so much. That video now sits at almost 14k views. A huge weight came off my shoulders when I was finally able to tell my truth, my way. Surprisingly got nothing but love by doing so and been an open book ever since that day. I now am an active advocate for not only myself and my journey, but for a group of MRKH’ers looking into getting surgery, as well as newly diagnosed girls and anyone else needing that support.

I don’t know what my future looks like, just taking it a day at a time. Tackling all the challenges the best way I can. Hoping that I can let it build and strengthen me, and not break me.

Sending so much love your way!


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