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My Journey through Pre-Vulvar Cancer

A Vagina in an All-Breast World

Dear Vagina,

Ever since the beginning, you’ve been there for me through thick and thin.

At first I was afraid of you, told you were not something I should play with or touch, etc. As a teenager, I grew braver and began to know you more and, dare I say, became very fond of you and the time we spent together. Our exploratory moments together allowed me to know you on much deeper levels.

You treated me well, even after I traumatized you and pushed a human life from you at a young age, resulting in inner tears. I’ve always wondered are you upset that you never got back to your original form? I did make attempts resulting in endless kegel exercises, although I would often forget while in the midst of doing them. I persisted anyway. Life went on and we continued to be good friends.

Things sailed along smoothly until I completely ignored you while going through a very traumatic breakup. I let you down, I would even go so far as to say that I neglected you.

I went on hiatus for 6 years and as a result you came along for the ride. While I had a few flings, I chose complete celibacy for 3 and a half years. I was quite content to be single and do the healing work around why I seemed to always attract the frogs, not the princes.

Fast forward to my early forties. My specialist told me that I have VIN 3 (the last stage before vulvar cancer) and he would have to perform a wide local excision to remove part of my labia. Yes, I was freaked out but had complete trust in him. That first surgery was in October of 2016 and a couple of weeks later I left for hot and sunny Arizona and this became a soon-to-be distant memory.

In June of 2017, I saw my surgeon for a follow-up and was told that more surgery was needed. As I faced a life filled with cancer, I became more fearful. I started to research VIN 3 as a way of helping myself understand what I was really up against.

It stands for Vulvar Intraepithelial Neoplasia, meaning that the abnormal cells (pre-cancerous skin lesion/s) are found on the surface layers of the vulvar skin. If left untreated, and the abnormal cells break through the membrane into the deeper tissue, it is then classified as cancer.

As I researched further, the statistics I found terrified me. According the the Canadian Cancer Organization, (http://www.cancer.ca/en/cancer-information/cancer-type/vulvar/statistics/?region=on) as of 2013, 955 Canadian women were diagnosed with other and unspecified female genital organ cancers, and 280 Canadian women died from these! In the US, stats found on the American Cancer Society site (https://www.cancer.org/cancer/vulvar-cancer/about/key-statistics.html) showed that as of 2017, vulvar cancer accounts for 4% of cancers of the female reproductive area and 0.6% of all cancers in women. I learned that out of 6,020 diagnosed cancers of the vulva 1,150 of these women will die.

I had more parts of my labia removed as a further precaution to my precancerous state. I had two follow-up surgeries in August 2017 and September 2017 but the last surgery, in September, was by far the worst and most painful.

After the one month recovery time, I tried to reacquaint myself with you, my long lost friend. I bit the bullet, grabbed a hand mirror and, with one eye squinting and the other completely shut, slowly, with baited breath, I opened one eye at a time. I screamed and dropped the mirror. “NO it can’t be! I must have seen that wrong!”

With lightning speed, I held the mirror up to my lady parts again to see that it could very much be and was in fact happening at this moment! One of my labia (the healthy one) was it’s normal length and the other one (health challenged) was much, much shorter! I was awestruck, it felt as though all time stood still and the only ones present were myself and my newly deemed dysfunctional vagina.

I imagined that this must be how a man might feel having lost one testicle. I felt ashamed and the “not good enough” stuff I’ve been actively working on for years flooded forth with an entirely new level of self-awareness. I wondered how my partner would feel about this, ultimately knowing in my heart that his opinion wasn’t the deciding factor in this game.

I had to come to terms with myself — my new self — and accept and love me for who I am. After seeing this, it inspired me to delve deeper into my research, to learn more about women in similar situations. It somehow comforted me knowing that others were in the same predicament as I.

What I soon discovered was not only are there others like me but others that are WAY worse off than I.

The worst case scenario with vulvar cancer includes a complete skinning vulvectomy: the removal of the entire vulva with total skin graft replacement and chemotherapy!

Whaaaat? Isn’t having the top layer of your vagina removed parallel to losing a breast? Don’t get me wrong, losing one or both breasts would be devastating, but what about having to have the top layer of your vagina surgically removed with skin grafting to make up for it, or losing one or both labias?

I can speak from experience that it does! I have a deepening self-love, and a daily practice to support that. Luckily, I have a supportive partner that tells me I am beautiful either way. I wonder how many women in the same situation are not as lucky or worse yet, still playing the dating game with this loaded gun hanging over them with each sexual encounter.

All I can offer is this: if the person you are entering into a sexual relationship is not accepting with your imperfectly wonderful self and judges you, then it is their loss and they are not meant to be friends with your vagina!

My dearest vagina, I know you have been through quite a lot in this lifetime. Moving forward I vow to keep doing all that I can to keep you healthy, to allow you to raise awareness and bring encouragement and inspiration to other vaginas either in similar or worse situations as you, and to not allow your asymmetrical self to be under appreciated or taken for less than the glorious part of me that you are. Even though we have a fourth surgery scheduled at the end of this month, I am committed to seeing you through this and supporting you in all ways possible.

With much love and gratitude,

Annik

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