“My Body is a Mystery to Me”: Vulvodynia in the Pandemic
Our clinic should have been empty.
First, it was early June 2020 in midtown Manhattan, just weeks after New York City had been the epicenter of the COVID-19 pandemic. Phase I reopening had not yet begun, and the city was a ghost town. Second, our clinic – the Centers for Vulvovaginal Disorders – is so specialized that many of our patients travel long distances to be seen by our doctors. And finally, the vast majority of the conditions we treat are not life-threatening. Given all this, it was shocking to see our patient days fully booked as soon as we reopened. Hundreds of patients have risked contracting the virus to be treated for conditions most people have never heard of. These conditions fall under the umbrella term vulvodynia.
Vulvodynia refers to chronic pain disorders in the vulva. The vulva is what most people think of as the “vagina,” encompassing not only the vaginal canal (what the vagina actually is), but also external organs such as the clitoris, the large and small labia, and the urethra. Vulvodynia is diverse: the pain can be constant or only occur during sex, range from mild discomfort to debilitating misery, and be accompanied by other symptoms such as urinary frequency or constipation. I have read blog posts and articles about how vulvodynia patients are relieved just to hear it named. The power of validation through diagnosis is significant for these people, most of whom have had to deal with providers who tell them their pain is purely psychological.
However, vulvodynia is not itself a proper diagnosis, as it says nothing about where in the vulva the pain is coming from, what is causing the pain, or what the best treatment options are. It would be akin to diagnosing someone with “back pain,” without specifying whether that back pain is due to arthritis, osteoporosis, or any other number of actual disorders. With few specialists in the field of chronic vulvar pain, many doctors are unable to give more specific diagnoses, not to mention treatments. That is why patients travel from all around the world to see our doctors.
The five most common disorders our clinic treats are:
hypertonic pelvic floor muscle dysfunction, or pelvic floor muscles that are too tight and in spasm;
congenital neuroproliferative vestibulodynia, a genetic mutation in the tissue surrounding the vagina that causes too many nerve endings;
hormonally-mediated vestibulodynia, or irritation in the tissues of the vulva due to menopause or birth control pills (yes, your birth control pills can deplete your vulva of hormones it needs to stay healthy - particularly testosterone!);
pudendal neuralgia, or injury to a major nerve in the vulva; and
lichen sclerosus and erosive lichen planus, which are autoimmune skin disorders.
Of course, this is by no means an exhaustive list of the causes of vulvar pain; endometriosis, cancers of the reproductive organs, and other disorders also cause chronic pain in millions of people worldwide. More research on all of these conditions is needed, especially given that an estimated 16% of people with vulvas experience chronic vulvar pain at some point in their lifetimes. Alarmingly, almost half of people with vulvodynia do not seek medical treatment for it. This reluctance to seek treatment is likely due to a range of factors, from stigma and shame about the vulva, to embedded societal expectations that it is sometimes normal for sex to hurt. And within this, other social and cultural factors can play a large role: Hispanic women in the United States are 40-80% more likely to have vulvodynia than their white counterparts.
As for why social and cultural factors can influence these health disorders, it is important to consider the history of women’s health. Starting from the second millennium BC, the term “hysteria” was used to diagnose women who complained of physical ailments without an obvious cause. The hysterical woman was mad, nonsensical, and interestingly, often sexually frigid. Not only did this term deny the physical health realities of women, but it also implied that women were incapable of assessing their own health. Even though hysteria is not used anymore, its legacy continues today through the well-documented biases doctors have in taking male pain more seriously than female pain. These biases significantly impact health outcomes, and also exist in regards to race, ability, and transgender status, among other factors. Even in the case of the COVID-19 pandemic, the fact that Black Americans have died at nearly three times the rate of white Americans is evidence that healthcare is not an objective science and can be influenced by many different factors.
Still, there often actually is a brain-body feedback loop that renders vulvodynia conditions even more difficult to diagnose and treat. Take hypertonic pelvic floor dysfunction, one of the most common forms of vulvodynia. It occurs when the pelvic floor muscles are in spasm, leading to an overproduction of lactic acid - which is why people with this condition feel a “sore” and burning pain around the entrance of the vagina. The reason these muscles become overly tight can be caused by a number of physical factors, such as scoliosis, leg length discrepancies, or even as an unintentional byproduct of strengthening core muscles (I remind myself of this frequently to absolve guilt for skipping ab workouts.) However, there are also potential psychological causes as well: anxiety can cause someone to unconsciously contract their pelvic floor muscles, and some people just naturally hold their tension/stress in their pelvic floors. The crux is this: what can start as just a physical condition is often amplified and reinforced by the anxiety, fear, or stress it causes. The pain increases the anxiety, and the anxiety increases the pain in a vicious cycle. A recent study published by our clinic found that half of the women with pelvic floor dysfunction experience pain-related anxiety about their vulvar pain.
The crux is this: what can start as just a physical condition is often amplified and reinforced by the anxiety, fear, or stress it causes. The pain increases the anxiety, and the anxiety increases the pain in a vicious cycle.
It’s a bit of a “chicken-or-egg” situation, as it can be difficult to determine whether physical or mental factors were the initial cause of the feedback loop. Importantly, though, psychological components do not invalidate the physical realities of this pain. In the vast majority of vulvodynia cases, the primary component is physical in nature, and as such, needs to be physically treated.
Though I work on the treatment side now, I have over a decade of personal experience with vulvodynia as a patient. It began when I first tried to insert a tampon and felt excruciating pain, almost like there was a “wall.” I bounced around between multiple gynecologists and other health care providers who gave me medical advice ranging from “You have a semi-perforated hymen” (which turned out to be untrue) to “It’s all in your head.” One gynecologist even had the gall to tell me, “You just have to learn how to get horny,” completely ignoring my quite significant experience in arousal and self-pleasure as a hormonal teenager.
I was diagnosed with “vulvodynia,” then “vaginismus,” then “vaginitis,” all big words that were thrown at me without explanation or treatment plans. The only treatment anyone suggested was that I get extensive surgery to remove some of my vulvar tissue. It’s lucky I didn’t get that surgery because I now know that my pelvic floor muscles, not my tissue, are the causes of my pain. For so many years, I felt like it was my fault that the pain was so bad — like there was something wrong with me because I was not able to "just relax" and enjoy penetration like so many others seemed to be able to. I was very lucky to have an incredibly supportive family, patient sexual partners, and a set of vaginal dilators, all of which helped me become more comfortable with insertion and getting my muscles to relax.
When I first started working at the Centers for Vulvovaginal Disorders, I was struck by how similar my experience was to the experiences of nearly all our patients. As a private and highly-specialized clinic, we are usually the last stop for patients, and most go to 5 or 6 doctors before turning to us. I’ve seen thousands of patients in my time here as a clinical research coordinator and heard countless stories of ended or strained relationships, decreased quality of life overall, and unsympathetic healthcare providers. Funnily enough, a patient’s words from my very first day on the job have stuck with me most. She was in the consultation room with my boss, Dr. Andrew Goldstein, trying to describe her pain, when she paused and remarked, “My body is a mystery to me.”
I felt like it was my fault that the pain was so bad — like there was something wrong with me because I was not able to "just relax" and enjoy penetration like so many others seemed to be able to.
That little phrase has been echoed in various forms by so many others. Some of our patients refuse to look at their vulvas with a mirror when our doctors try to show them the exact source of their pain. On multiple occasions, I’ve heard some version of: “I don’t want to look. It’s gross.” Rejection of one’s own body parts is not necessarily bad; for example, some trans women and men, gender-fluid/non-binary people, intersex people, and others might not identify with part or all of their genitals for many reasons, including the social meanings ascribed to genitals. In this case, though, pain intersects with shame in a body part many of our patients would otherwise claim. The vulva is one of the most amazing organs to exist – the clitoris is the only organ that exists solely for pleasure! Yet, despite the ubiquity of porn and nudes, despite the “free the nipple” movement and reclaiming of female-typical bodies of all shapes, the vulva always seems to be left out, even among people who do not struggle with vulvodynia.
The relevance of this field in light of the current pandemic is perhaps not an obvious one. To me, this intersection presents a valuable opportunity to discuss chronic vulvar pain using language that has become more accessible to the general public. The COVID-19 pandemic has introduced health-related anxieties into the daily lives of billions of people. An itch in the throat is now fear-provoking, and a cough spells out doom. The long incubation period of the virus is equally terrifying, as it suggests that our bodies can harbor a deadly virus for days or even weeks without our knowledge. The pandemic has therefore led to both a heightened awareness of the body and greater mistrust of it. This simultaneous hypersensitivity to and disconnect from the body is very familiar to people who suffer from vulvodynia. In addition, just as there is not yet a widely available cure for the virus, the right cure can elude many people with chronic vulvar pain. The feelings of chronic hopelessness, anxiety, and depression that millions are experiencing for the first time often debilitate vulvodynia patients for decades on end.
I don’t mean to equate different types of suffering. Instead, I hope that framing vulvodynia through the lens of the pandemic can be a useful practice in empathy, especially now that it is broadly understood just how much of a mystery the body can be. At the end of the day, it’s important to remember that there are vaccines that are out now, and there are treatments for chronic vulvar pain - myriad treatments, in fact, all tailored to the specific cause of pain. In the meantime, all we can do is see the right doctors, take proper precautions, and tune in to the diverse signals of our bodies, remembering that mystery can equally engender pleasure as it can pain.
If you would like more information about these conditions, three leading experts in vulvodynia – Dr. Caroline Pukall (Sexual Health Research Lab at Queen’s University in Canada - which conducts a lot of fascinating research on sexual health and is often looking for study participants), Dr. Andrew Goldstein (Centers for Vulvovaginal Disorders), and Dr. Irwin Goldstein (San Diego Sexual Medicine) – wrote a book that many of our patients have found very helpful, both in clinical and personal settings, called When Sex Hurts. Other resources include the National Vulvodynia Association and the International Society for the Study of Women’s Sexual Health.
