"You never know how strong you are, until being strong is your only choice." Words by the great Bob Marley that resonate so much with my pain.
I was in New York City, finishing my Masters Degree, basically living the dream. Until one day out of nowhere, hell arrived. I started my first symptoms of Vulvodynia, without knowing what it was, or anything about it. All I knew was that there was an excruciating chronic pain in my vulva.
When people ask me how I feel, I think the best way to describe it, is as if acid is being poured inside me, or as if someone is lighting a fire inside my vagina. It burns like hell. If you ever had a yeast infection, the sensation is similar, except there is no cure for Vulvodynia. At first I thought it was an infection, but after going to gynecologist after gynecologist, all my lab results came out negative for bacteria, virus, active infections etc. At one point, a doctor told me that the pain was all in my head, and that there was nothing wrong me. That I should "take a glass of wine and relax." This was a very frustrating time for me, and it felt as if no one would believe me, believe in my pain, and how it was debilitating to my life. So not only was I dealing with physical pain but it was affecting me socially and emotionally as well. I couldn't ride a bicycle anymore, engage in my day to day activities, and obviously, my sex life was nonexistent.
I was feeling incredibly alone, angry, frustrated, and heartbroken. I thought I was the only woman going through this. I found the NVA, and it was like seeing the light at the end of the tunnel. Finally, someone knew about my symptoms and the name of my pain. Vulvodynia is real, and there are a lot of women and people with vulvas who have it as well.
16% of women will have vulvodynia at some point in their lives and 75% of women feel ashamed to talk about with loved ones. This is why it's important to break the silence. We need to be able to talk freely, and without shame about the conditions that affect our health and quality of life. They are more common than we think.
Our society is filled with taboos that we carry internally for years, and it's time to stop. Stigma is so last season. There are many women and people with vulvas suffering in silence because they are too afraid to talk about it, and who are discredited by doctors who believe that vulva-related pain is imaginary. It saddens me that there aren't enough specialists who know how to treat it, especially in Latin America. My project Peace With Pain is born aiming to raise awareness about vulvodynia and to support women and people with vulvas who need to be heard and understood.
To all the people out there suffering, you are not alone!
You can find Pame Clyne’s project, “Peace With Pain” below.