I remember exactly how it felt to be lying on the cool tiled floor of my parent’s bathroom. I was 13 years old. The tampon I was grasping awkwardly between my legs looked exactly like the one on the box, but where I thought it should go caused intense pain when I tried pushing. It felt like hitting a wall and having it bite you back. I didn’t think much of it at the time because anything about becoming a woman was just not to be discussed. I never talked to anyone about it, not until much later.
When I was 16, I tried having sex for the first time and was shocked by the excruciating pain. I knew it would hurt at first, but I never imagined it would feel like serrated knives between my legs, like fresh rope burn, like a ring of fire that burned for days afterwards. It was so painful that it traumatized me. I wouldn’t speak to my boyfriend after that, and then we broke up and I fell into a deep depression.
Years passed before I would allow anyone to touch me. At the same time, I yearned to be like everyone else. I told myself I would get over it, that I just hadn’t met the right person, that I should wait until I was older to have sex anyway.
The first time I had a Pap smear, I was in agony as the doctor jammed the speculum into my sensitive spot and my legs clenched together. “Legs apart!” she said briskly, and tears rolled down my cheeks. It felt as if the device was tearing me in half. I did not complain. I did not speak up. I still hadn’t told anyone that it hurt. I was too ashamed and scared that I would be scolded and judged.
Throughout college, I found many excuses not to have sex, or to run away as soon as it was over. I did not develop close relationships with the men I dated, and never told them I was in pain. Sometimes I would pretend to be enjoying sex because when I did, it was usually over faster.
My avoidance was leading me to a very lonely place. I began to detach during intimacy. I found I could leave my body and turn off the pain by tuning out everything. Drinking helped. And soon after, drugs helped, too.
In my late twenties, I met someone different. I had never connected with anyone the way I did with him, and I was getting to the age where all I wanted was to find “my person”. We fell madly in love and moved in together. Sex was painful with him, but I pretended it wasn’t. I told myself that since I had finally met someone who I loved and really loved me back, the pain would go away. I held on to this “fake it ’til you make it” motto, but after we moved in together, things quickly went south.
I would do almost anything to avoid sleeping with him. Together, we researched some options and I began trying anything I could to fix the problem—acupuncture, low-oxalate diets, sex therapy, dilators, vitamins, topical creams. I saw over a dozen doctors and was told repeatedly that there was nothing physically wrong with me, that my problem most likely stemmed from a psychologically traumatizing event I experienced as a child, that I was suppressing something, that my religious upbringing was partially to blame, and that all I needed was to work through these mental issues.
After three years, the lack of intimacy was taking a dreadful toll on us both. We split up shortly after my thirtieth birthday, and I moved to New York City. I was brokenhearted and ready to start over, but I felt defective, like less of a woman. The downward spiral of chronic pain strengthened its grip and affected all aspects of my life. Finally, a friend reached out to offer support and encouraged me to find another doctor. I fell into the capable and caring hands of a pelvic floor physical therapist.
She was kind and compassionate and listened to me as I wept and shared my story. We worked together for six weeks, so I could learn to relax my pelvic floor muscles, which had tightened as a self-defensive reflex to painful penetration. Things improved slightly, and she referred me to a specialist for further consultation.
He was the first person to explain that I had Vulvodynia, chronic vulvar pain of unknown cause, or more specifically Vestibulodynia, since my pain was focused in the vestibule, around the opening to my vagina. Since hormone treatments, creams, and injections hadn’t relieved my pain, the doctor speculated that I had an abnormal number of nerve endings in the vestibule and recommended removal of the painful tissue.
I underwent a vestibulectomy in December, and in July of the following year, I experienced pain free sex for the first time. I was 34. It has now been two years since the surgery and I am still completely pain-free.
Throughout this process, I learned that speaking up about something that is bothering you is always a step in the right direction. My advice to anyone struggling with a similar issue is to never give up. Stay active and engaged in the process as you follow your path to wellness.
There will not be a magic bullet, and the surgery is not for everyone, but each step will lead you closer to a solution. Practice radical self acceptance for where you are now, knowing that as you travel, you will learn that there are many other people who share your pain. Don’t be afraid to talk about it! I promise that you will meet many people who are willing to help you along the way.
To learn more about this condition, check out the National Vulvodynia Association.