Let’s Talk About Vulvas: Vestibulodynia
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Bonnie Gross began experiencing vulvar pain when she was 13 years old. She had just started menstruating, but when tried to use a tampon, she immediately knew something was wrong. “It felt like something was in the way, and I couldn’t do it right,” she recalls.
At 19, Gross was dating her first boyfriend and was ready to try penetrative sex for the first time. But once again, she found herself experiencing intense pain. “It felt like a hot knife digging in,” she says.
Noa Fleischacker remembers screaming in pain during her first pap smear, so her doctor prescribed her some sedatives. But when she tried again, even though she felt calmer, the speculum insertion was still too painful.
Eventually, Fleischacker had to go under anesthesia to get a routine pap smear and pelvic exam done. “I felt so embarrassed—I didn’t know what to tell people about why I was going to the hospital,” she says. “It seemed like a dramatic thing to do for something that for everyone else I knew was not a big deal.”
Gross and Fleischacker are among the one in four women who experience unexplained vulvar pain, or vulvodynia. Specifically, they suffer a type of vulvodynia called vestibulodynia, which is characterized by pain in the vulvar vestibule. This is the ring of tissue at the entrance between the vulva and the vagina. It exists inside the labia minora [the inner lips of the vulva] and around the urethra.
But despite how common vulvovaginal pain conditions like vestibulodynia are, most gynecologists have minimal training, if any, in how to treat them. “Unfortunately, most doctors don’t even know where the vulvar vestibule is,” says urologist and sexual medicine specialist Rachel Rubin, who is also the director-at-large of the International Society for the Study of Women’s Sexual Health (ISSWSH).
As a result, many people with vestibulodynia find themselves jumping from doctor to doctor, only to be met with a frustrating lack of answers. But vestibulodynia is treatable, and patients like Fleischacker and Gross are advocating for greater education in the medical community on how to help those with vulvovaginal conditions. “Vulvar pain is not something you should have to accept as a part of your life,” says Fleischacker. “It’s something that you deserve care and treatment for.”
What is vestibulodynia?
Some people with vulvodynia only experience symptoms in one part of the vulva, known as localized vulvodynia. Others experience symptoms throughout, or generalized vulvodynia. When pain is localized at the vulvar vestibule, this is called vestibulodynia.
Vestibulodynia can cause a wide array of symptoms. Some people have provoked pain—or pain that only occurs when the vulvar vestibule is touched. Others have pain all the time, known as unprovoked pain. The symptoms may present as burning, itching, or sensations of urinary frequency and urgency. People with vestibulodynia often experience pain with inserting tampons, penetrative sex, undergoing pelvic exams, wearing tight clothes, or sitting. “It ultimately is very limiting to people’s lives,” says Kiran Sigmon, founder of the Mountain Area Health Education Center (MAHEC) vulvar clinic. “It can really test one’s thoughts about their own worthiness and their own sexuality.”
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What causes vestibulodynia?
In order to effectively treat vestibulodynia, first patients must work with their doctors to uncover its root cause. Common causes of pain at the vestibule include hormonal problems, tight muscles, neuroproliferation, and inflammation.
Hormonally mediated vestibulodynia:
When Maya Roy was suffering from ovarian cysts that caused such severe pain that she lost consciousness, her doctor suggested that she try an intrauterine device (IUD). But soon after, she started experiencing pain “down there,” she says. “It was a stinging pain, and it also felt like pins and needles.”
A month later, she decided to have her IUD removed, but the pain never went away. Roy had just committed to attending college out-of-state in West Virginia, but her pain was so distressing that she decided to go to school in her home state of Connecticut
Vestibulodynia that occurs after starting hormonal contraceptives is called hormonally-mediated vestibulodynia. “One of the things that I see over and over again in reproductive-age women who did not have pain early in life is often some hormonal change such as getting started on birth control pills,” says Sigmon.
Other times, she adds, people may experience symptoms of vestibulodynia following childbirth and breastfeeding, when estrogen levels drop to post-menopausal levels. This pain may persist even when estrogen levels return to normal and menstruation resumes.
Hypertonic pelvic floor dysfunction:
Vestibulodynia can also be caused by hypertonic pelvic floor dysfunction, in which muscles surrounding the vestibule become hypertonic (tight) and painful. Tight muscles can also hinder blood flow to the area, and in turn lead to a buildup of lactic acid that causes burning, aching, and other uncomfortable symptoms.
Neuroproliferative vestibulodynia:
Another cause of vestibulodynia is the presence of too many nerve endings in the vestibule, known as neuroproliferative vestibulodynia. Some people with neuroproliferative vestibulodynia have always had pain or, like Gross, noticed their symptoms from the first time they inserted a tampon or tried penetrative sex. This is called congenital neuroproliferative vestibulodynia, and experts believe that people with this condition were born with excessive nerve endings.
In others, neuroproliferation occurs later in life, often following an infection or allergic reaction. Sigmon says she often sees women who developed vestibulodynia following recurrent yeast infections. “We believe that for most people, you get a yeast infection, get treated, and all the symptoms go away,” she says. “But for some people, that process of infection will change the nerves in the skin layer to make them more sensitive long-term.”
Inflammatory vestibulodynia:
Other cases of vestibulodynia are driven by inflammation. This inflammation can be caused by exposure to irritants such as in vaginal creams or lubricants, or it can be caused by chronic infections like yeast infections.
Early on in his career, says Andrew Goldstein, an obstetrician gynecologist and director of the Centers for Vulvovaginal Disorders, he noticed that many of his patients complained of persistent infections, and that their vestibules looked red and inflamed. But after taking a swab, “there would be very, very low levels of yeast,” he says.
Since then, studies have suggested that some individuals are predisposed to having an exaggerated inflammatory response. As a result, they begin experiencing pain and inflammation at a fraction of the concentration of yeast that causes symptoms in the average person. “Imagine that you have a security system, but it goes off when a leaf goes by,” says Megan Falsetta, a translational women’s health researcher at the University of Rochester Medical Center. “It’s overreacting to something that’s not a real threat.”
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How is vestibulodynia diagnosed?
When Gross went to her university’s student health center in Alabama, her doctor at first assumed that her pain was due to a sexually transmitted infection. When that was ruled out, the doctor told her to drink wine before sex to make it less painful.
Gross’s experience is far from unique. Determining the best course of treatment for vestibulodynia’s painful symptoms first requires finding a doctor who is knowledgeable about vulvovaginal pain. But most general gynecologists and urologists are not adequately trained to make a diagnosis. “It was not taught to me in medical school about how to examine the vulva and the vulvar vestibule,” says Rubin. “So, most doctors just put a speculum inside, which completely bypasses the vulvar vestibule, and they never examine it.”
A vulvar expert will know how to take a thorough medical history, followed by performing a careful physical exam. During the exam, the doctor will observe the skin to rule out any dermatological disorders or infections. They will assess the pelvic floor muscles for any muscular issues. They may also look for increased sensitivity by using something called the “Q-tip test,” in which they lightly touch parts of the vulva with a Q-tip. “If a light touch with a Q-tip is painful for someone, that’s vulvodynia,” says Sigmon. “If it’s specifically tender at the vestibule, that’s vestibulodynia.”
How is vestibulodynia treated?
Treatments for vestibulodynia vary based on what a person’s underlying cause is. Hormonally-mediated vestibulodynia can be treated with topical hormones—usually either estrogen or estrogen combined with testosterone.
If a doctor finds hypertonic pelvic floor dysfunction, they may refer the person to a pelvic floor physical therapist. Because chronic pain can drive muscles to become tight, physical therapy is also often helpful for those diagnosed with other types of vestibulodynia. “I haven’t met someone with a pain diagnosis that hasn’t had a tight pelvic floor,” says Elizabeth Kotarinos, who is a pelvic floor physical therapist based in Chicago.
If physical therapy alone isn’t enough, other therapies such as Valium suppositories or Botox injections can help ease spasming muscles.
Neuroproliferative and inflammatory vestibulodynia are more challenging to treat, says Rubin, but patients have options. Treatments for neuroproliferative vestibulodynia include tricyclic antidepressants and capsaicin. A vulvar expert may also recommend a vestibulectomy, a surgical procedure in which they remove the vestibule. “If you truly have neuroproliferation, surgery shouldn’t be a last resort,” says Rubin. “In the right hands, it has a very high success rate and can be a very reasonable option.”
Doctors may treat inflammatory vestibulodynia with antihistamines, mast cell stabilizers, and anti-inflammatory medications. “The inflammation is driven by a type of white blood cell called mast cells,” says Goldstein. “So, there are lots of medicines we can use to try and inhibit mast cells.”
Vestibulodynia patients advocate for greater awareness
When Fleischacker woke up from the anesthesia, although her pap smear was done, she was no closer to having answers about her vulvar pain. “There was this attitude that I was an noncompliant patient,” she says.
Thus, she would embark on an eight year-long journey to find answers, even resorting to flying out-of-state to Florida to see a vulvar specialist when countless doctors where she lived in Chicago dismissed her painful symptoms.
Inspired by her experience, Fleischacker co-founded a storytelling podcast with a mission to shed light on vulvovaginal pain. Through this podcast, her and co-founder Hannah Barg realized they were far from alone. “When I finally started opening up and talking to people about my experience, I was shocked to find that there were so many other people in my life who had a similar story,” she says. “I realized this was so much bigger than my own personal experience.”
Since then, Tight Lipped has evolved into a grassroots advocacy organization with a mission to change OB/GYN education. It has five chapters across the country—Connecticut (statewide), New York City, Philadelphia, Washington DC, and Los Angeles. “Our chapters are bringing together patients to talk about their conditions and also fighting for local teaching hospitals to incorporate training on vulvovaginal health conditions,” Fleischacker says. “We want to address at the root of why patients are experiencing so much dismissal and misdiagnosis.”
Gross, who is also a Tight Lipped advocate, is similarly not shying away from telling her story. After three years of searching for answers, she finally made an appointment to see Goldstein while she was doing an internship in New York City. After trying more conservative treatments, she had a vestibulectomy a couple of weeks after graduating college.
Now a filmmaker, Gross has since written and produced a film based on her own story called “Lady Parts.” The movie has won numerous awards in film festivals across the country and is helping shed the stigma around talking about vulvovaginal health.
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What should I do if I am experiencing symptoms of vestibulodynia?
Living with vestibulodynia is painful and can feel isolating, but you are not alone and do not have to live with these symptoms. ISSWSH has a provider directory to help connect people with knowledgeable experts. “Don’t quit—there are solutions for almost everybody,” says Goldstein. “Find doctors who are willing to keep looking even when it’s not obvious.”
If you are interested in joining the campaign to close the gaps in OB/GYN education and connect with other women living with vulvovaginal pain, join a Tight Lipped chapter or sign up to its mailing list to stay updated on upcoming opportunities and events. “There’s a lot of power in coming together with other patients to recognize that you aren’t alone in your own experience, and that you are deserving of compassionate care,” says Fleischacker.
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