If you see me smiling, it’s because I’ve made peace with my pain. I feel it, I recognize it and I let it go.
The first time I heard the word vulvodynia was in an episode of Sex and the City. If you watched the show, you may remember when Charlotte mentions it at brunch, saying that “her vagina is depressed.” I honestly laughed with her friends, not knowing that years later, I was going to be diagnosed with vulvodynia. Unfortunately, the show handled it unrealistically, suggesting that it’s nothing to be worried about. I hated when Charlotte said it doesn’t hurt! After my symptoms started and I watched the episode again, I thought, “How dare you say you’re not in pain, because you have no idea.”
I was living in New York, studying for an MFA at Parsons School of Design, when my symptoms started. It was the best time of my life. I was living in one of the most wonderful cities in the world and going to fashion school, meeting people from different cultures, eating amazing food and enjoying incredible art. I was very happy until, out of nowhere, my vulvar pain sent my happiness down the drain. At first I thought I had a normal yeast infection, which was confirmed by the school’s physician. That was the beginning of non-stop antibiotics and a long struggle to regain my life.
I had to go back to Mexico, because the pain was constant and the medications didn’t work. People had recommended other gynecologists, but my health insurance had expired. Being a foreigner in the U.S., with no health insurance, was like being invisible. I was alone and feeling miserable, not knowing what was happening to my body and missing my family. Suddenly, I realized that my New York days were over.
I arrived home and went directly to the hospital. At this point, my gynecologist knew something was wrong, but could not diagnose it. All my test results, e.g., bacterial and other infections, came back negative. I felt like I was going crazy, and that maybe it was all in my head.
Next, I met with other gynecologists, urologists, and infectious disease specialists. I even went to see a famous ‘chaman’ in Mexico, known for his herbal teas that help infertile women get pregnant. I tried other alternative medicines, but I was completely overwhelmed. Still, no diagnosis. During this period, my boyfriend broke up with me and my work was suffering. So, like most people, I googled. After hours surfing the internet, I found the term Vulvodynia, and then I found nva.org. It was a life-saver for me, because I was not alone anymore.
I packed my bags and went to Miami, where my dad was living at the time. I made an appointment with Jay Trabin, M.D., who has a private practice in West Palm Beach, Florida. He is very knowledgeable about vulvodynia and a super-nice person, so I immediately felt comfortable. Dr. Trabin examined me, and within minutes, I got my diagnosis of Generalized Vulvodynia and Pelvic Floor Dysfunction. I felt so relieved. I began a combination of treatments with a pain management specialist. My treatments included pudendal nerve blocks, Botox, antidepressants, topical creams, and most importantly, I started seeing a therapist.
I know many of us are still struggling to find new ways to cope with vulvar pain, praying for new treatments or a cure. Even though I’m getting help, I still have bad days and find sex painful sometimes. I’ve managed to make peace with the pain, even though it hasn’t completely gone away. I’m not ashamed anymore and want to help other women in my country who are still suffering in silence. I have already started the first platform in Mexico dedicated to helping women with vulvodynia, @peacewithpain. With some help from NVA, I am optimistic we will finally break the silence.