I’m Not Ashamed Anymore to Talk About My Vaginal Cancer

By Sarah Nielsen

I remember vividly when I first experienced irregular spotting and bleeding. I knew it was a problem because I had a hysterectomy many years earlier. The next step was a checkup, Pap test and HPV test at my family practice. When I called for my results, the nurse accusingly said, "It says you have HPV. You know what that is, right?" I was immediately ashamed and embarrassed. To this day, the hurtful tone of the nurse’s voice drives my commitment and passion to educate others.

Many women would have stopped right there and not fought for the help they need. I have met some of those women. I have met women who avoid the doctor because they are embarrassed to get pelvic exams, women whose husbands have left them, and women who are shamed by loved ones because they have HPV. But I continued to fight to figure out what was wrong.

Soon after, I was diagnosed with vaginal cancer. When I first heard, I did not want to tell anyone. I actually told as few people as possible. I was so ashamed and so embarrassed to even say the word "vagina," let alone share that my vagina had problems and that I had human papillomavirus (HPV). Looking back, I wish that I shared with more people and asked for help. Maybe it would have taken some pressure off of my caregivers. Maybe I would have felt less isolated. Little did I know then that I would eventually become an outspoken advocate for gynecological cancer and HPV awareness and speak to large groups of people about my vagina.

My treatment included 2 months of intense external radiation, internal radiation, and weekly chemotherapy. I did not lose my hair and do not have any visible scars from my cancer treatment. This taught me that cancer truly "looks" different for different people. While I am very gratefully cancer-free after 4.5 years, my daily life is impacted in important ways. I was immediately thrown into menopause at only 38 years old, and radiation wreaked havoc on my vagina, which literally shrinks as I age. My colon endures frequent ulcers and bleeding, and I also suffer lingering chemo brain, a variety of other symptoms, and the ever-present fear that my cancer will return one day.

The fact that many cases of vaginal cancer are preventable fuels my passion for advocacy and gives me the courage to share my story. After my treatment ended, I discovered a wonderfully empowering community in a small but mighty nonprofit called Cervivor. I attended their Cervivor School where I learned how to advocate for vaginal cancer and HPV awareness, and I found strength to share my story publicly. The more I share about my experience and how HPV vaccination and regular visits for gynecologic screenings can prevent vaginal cancer, the more women will be spared from this horrible disease. I cannot tell you how rewarding it is to know that my story has motivated people to go to their screenings, to get a symptom checked out, or to vaccinate their loved ones.

This is my new norm. I am comfortable with this new norm now and focus on how well I am doing otherwise, and how my body is capable of amazing things. It has survived a hellish cancer, has given me three beautiful children, carried me up Mt. Kilimanjaro, runs each year at Athena's Run for GYN Cancers, and brings me joy on the tennis courts with my friends.

I was determined to make my experience count for something bigger than myself. It would have meant the world to me to read a story like mine when I was diagnosed and in treatment. I hope my story gives other women the courage to ask questions, seek help, and reach out to others for the connection and community they need for support.

If you have vaginal cancer, please know there is HOPE and there are other women who know what you are experiencing. Please empower yourself and those you love by sharing the keys to prevention: education and awareness. And be sure you get your annual screenings and vaccinate your loved ones!