By Keena Batti
Keena Batti is a Los Angeles Chapter Campaign Leader of Tight Lipped. Stephanie Prendergast is a member of the Tight Lipped Speakers Bureau.
When I was 19, I wanted to start taking birth control. When I visited my gynecologist, he cataloged the many ways birth control would benefit me. He also warned of blood clots, but that was the only side effect I was given in my appointment. I didn’t realize that at 19 years old, I was making a decision to take a medication that would drastically alter my life.
Fast-forward a few years..
All throughout my 20s, I experienced UTIs. When I would seek help from my gynecologist, I was told I was “prone” to them, lectured to pee after sex (which I was), prescribed antibiotics, and sent on my way. None of my doctors ever investigated further.
When I was 28, I had a UTI that wouldn’t go away. I took progressively stronger antibiotics for months until I eventually developed an allergy to amoxicillin. I was in such excruciating pain that going to work was torture. My vulva was burning, stinging and itching. I couldn’t use tampons, wear pants or have sex.
After seeing several unhelpful gynecologists and not knowing where else to go, I eventually found a urologist and sexual medicine specialist who diagnosed me with hormonally mediated Vestibulodynia. He told me that my oral contraceptives had affected the testosterone receptors in my vestibule–an area of tissue at the entrance of the vagina. This hormone deficiency caused my tissues to become thin and damaged, leading to all of my pain symptoms.
He performed a q-tip test–a simple test that used just a q-tip to poke various areas on my vulva and vestibule and see if they hurt. None of my gynecologists had performed this test, and I had certainly never had my vestibule examined. My new urologist showed it to me with a handheld mirror–it was red, raw, inflamed and so clearly the source of my pain. I couldn’t believe my other doctors had missed it.
A few months later..
When I was in physical therapy, my therapist suspected I might have lichen sclerosus. Lichen sclerosus is a condition that affects the vulvar tissue and can cause irritation, itchiness, small fissures and pain with sex. When I went to my gynecologist to tell her my suspicions, she refused to even let me change into a gown and be examined. She looked at me and said, “You’re too young to have lichen sclerosus.” I sought out a more knowledgeable specialist and was eventually correctly diagnosed via biopsy.
I know now that even pre-pubescent girls can have lichen sclerosus. Her assumption was dated, biased, and frankly, wrong. Because of her lack of knowledge, my former gynecologist put me at risk for clitoral adhesions, labial absorption and vulvar cancer.
A few years later, when dealing with cyclical vaginal infections and UTIs, I struggled to find a doctor who could help. I eventually had to travel to Florida to see a vulvovaginal pain specialist and gynecologist who caught another skin condition–lichen planus. I now travel across the country every two months to have my condition monitored by this specialist, because there’s no one in Los Angeles I trust. While I consider myself highly privileged to be able to afford this care, it’s simply inaccessible to most pelvic pain patients.
Chronic vulvovaginal and pelvic pain is a silent public health crisis.
These conditions impact up to 1 in 4 women, non-binary, and transgender individuals. Most patients’ first stop for help with vulvovaginal pain is their OB/GYN. Yet it’s almost impossible to find an OB/GYN who learned how to diagnose and treat these conditions. One study found that vulvar pain patients go to more than 15 doctor appointments before getting a diagnosis, which has certainly been the case in my own journey to find adequate care.
Gynecologists in the United States do not receive training on the basics of vulvar anatomy, vulvar disorders, and common chronic vulvovaginal pain, like vulvodynia. This education is not included in the national requirements for OB/GYN education or taught at the vast majority of programs, leaving many OB/GYNs poorly equipped to treat patients in pain.
At Tight Lipped, we’re working to change this.
The goal of our current campaign is to ensure that every patient with vulvovaginal or pelvic pain can receive comprehensive and compassionate care. In order to achieve this, we’re advocating for all OB/GYN residency programs to provide training on vulvovaginal and pelvic pain conditions.
Nationally, we’ve made inroads this year at seven teaching hospitals, and we need help raising money to deepen our work. All donations will enable us to expand to additional teaching hospitals, learn advocacy skills so we can be effective in our community organizing work, and create informative materials about this campaign to break the stigma and silence associated with vulvovaginal pain. Click here to donate to our work.
