In the fall of 2008 my friend Olivia called me in tears from a bathroom stall inside a bus station. She was in total distress. She told me that for some reason it was incredibly painful for her to pee. Bewildered, I suggested that she might be experiencing a UTI. That, or a yeast infection. I'd had both; they seemed like the obvious causes of vaginal pain. She shot down both ideas instantly, assuring me that what she was going through was totally different. After 40 minutes of trying, she was able to let the urine pass.
For a few months after that call, Olivia withstood increased levels of severe pain when she had to pee, unable to release more than a teaspoon of urine from her body. It wasn't until 2011 that a urologist at Brigham and Women's Hospital in Boston performed a cystoscopy, a procedure that allows the doctor to examine the inside of the urethra all the way into the bladder. The results were bizarre. The physician affirmed that everything looked normal. It appeared that nothing was wrong.
Finally a gynecologist performed the exam Olivia needed: a Q-tip test, which identifies parts of localized pain in the vulva. The patient lies down on an examination table, legs splayed by stirrups, her vagina held open with a speculum. The doctor uses the cotton Q-tip to lightly touch various parts of the inner thigh and the labia; then they circle clockwise into the vestibule and move inward to the clitoris and vaginal opening. Many women who endure this procedure don't feel like they are being lightly touched; they report feeling insufferable pain, as if they are being stabbed with a knife. Afterwards, my friend got her answer, sort of. She was diagnosed with what's called vulvodynia: an umbrella term for pain in the vulva with no known cause.
And yet, according to Dr. Irwin Goldstein, the director of sexual medicine at Alvarado Hospital in San Diego, CA, a lot of women experience this subset of chronic pain; in the United States alone, Dr. Goldstein estimates that between 24.7 and 36.8 percent of women experience sexual pain.
You've seen the episode of Sex and the City: Charlotte visits her gynecologist after she begins experiencing an itching and burning sensation she assumes is a yeast infection. Upon examination, the doctor finally emerges from between Charlotte's legs and clarifies that Charlotte actually may have vulvodynia. Charlotte asks, "Is it serious?" The clinician responds: "No, it's mostly just uncomfortable; we can get it under control." She prescribes a light antidepressant, which she mentions is for the vagina, not Charlotte's mood. Later Charlotte and her friends joke about her "depressed vagina."
To many who suffer from the condition, this portrayal was an offensive misrepresentation of what it's like to actually live with a debilitating chronic sexual pain issue; it can take years shuttling back and forth between gynecologists, sexual health therapists, and pelvic floor physical therapists before women get any answers. During these years, women start to build a vocabulary of words that give clinical meaning to their agony. The shooting pain Olivia felt when she tried to urinate? It's caused by pelvic floor hypertonicity, a condition that causes the pelvic floor muscles to tighten up and spasm, making it very painful to urinate, defecate, or have sex. Then there are various kinds of vaginal and vulvar pain; vulvodynia is one kind; there's also endometriosis, pudendal neuralgia (pain along the pudendal nerve, affecting areas around the genitals and anus), clitorodynia (a form of vulvodynia in which pain is localized around the clitoris), lichen sclerosus (a condition characterized by thin, white, painful patches of skin often around the genital area), and interstitial cystitis (chronic bladder pressure and pain). One of the harshest and most upsetting symptoms of vulvodynia is dyspareunia, an often unthinkable pain during intercourse.
We're coming in because we're in so much pain, and we leave with just bags of ice.
Throughout the ordeal of understanding and treating vulvovaginal pain, sex looms as both a physical and emotional obstacle. For many women with vulvodynia and related disorders, attempting to have sex with their partners may become less about pleasure and more about pleasing the other person and keeping their relationships intact. For example, Michelle's live-in fiancé was at first emotionally supportive of her condition, but after awhile, he became angry towards her and seemed to resent her.
"On our two-year anniversary he gave me a back massage, and I actually fell asleep," she says. "I woke up hours later, and he was racing around the hotel we were staying in, absolutely livid. He yelled at me for 45 minutes; I don't remember what he said. I had sex with him to calm him down—it was horribly painful. He felt better afterwards."
"There was something wrong with me in that situation," she continues. "I'm glad I finally realized how miserable I was. He was an asshole."
"I've always felt like my femininity and sexual identity has been taken from me," Olivia tells me. Years after that phone call in 2008, she says that although she has been able to find treatments that worked for her, she still feels like she is living with a scar she cannot hide.
Further complicating diagnosis and treatment are the potential causes of vulvodynia. They range from genetic disposition to physical injury to emotional or sexual trauma to the use of some birth control medications.
This last Dr. Goldstein has been researching for many years. The idea is basically this: The vulvar vestibule is dependent on testosterone for its overall health and functioning, and taking birth control modifies testosterone levels in the vagina; Goldstein reports that 100 percent of the 70 million approximate users of birth control pills have a lower free testosterone value. These women also have an elevated sex hormone–binding globulin (SHBG), a protein that binds to estrogen and androgen. The unfortunate result of having elevated SHBG is that it lowers testosterone, which is therefore not freely available for tissue use. The vulvar vestibule synthesizes mucus for lubricated penetrative intercourse, and the vestibular glands cannot synthesize the mucus without testosterone. The lack of lubrication allows bacteria to develop and can inflame the pelvic floor muscles, causing women to experience a burning sensation during sex.
I've always felt like my femininity and sexual identity has been taken from me.
Michelle, a 32-year-old consultant, is convinced birth control gave her vulvodynia. Today her symptoms have developed into fully-fledged generalized vulvodynia, a form of vulvodynia that causes pain all the time, rather than when provoked. She also has developed lichen sclerosus, clitorodynia, and overall pelvic floor dysfunction. In the spring of 2012, when she was 27, she saw a nurse practitioner in Washington, DC, who said she might have vulvodynia. Another doctor then put her on antidepressants, which didn't help. She saw dozens of practitioners, and felt that she often had to pivot and burrow down another rabbit hole, searching in the dark for answers.
Despite his belief that there is a strong causality between birth control and the onset of vulvo-vaginal pain, Goldstein says that new forms of birth control are being prescribed more frequently than estrogen-based medications. Long-acting reverse contraception, like IUDs and implants, is gaining popularity. These forms of birth control do not increase SHBG levels or lower testosterone, and they do not suggest a relationship to vaginal pain. Nevertheless, individuals react differently to different medications; estrogen birth control pills can actually eradicate pain disorders in some cases.
But there are many causes of vulvodynia. Another woman, Hannah, tells me that when she broke her ankle a few years ago after falling down the stairs, she developed severe and persistent yeast infections, to the point that she couldn't wear tampons because insertion was too painful. She sought out care from several general gynecologists who repeatedly told her nothing was wrong with her. After finally seeing an OB specialist, she got her vulvodynia diagnosis. Prior to her fall, sexual discomfort was not something that bothered her; she had been married for four years before experiencing any pain whatsoever. After the injury, the specialist she was seeing said that it threw off her pelvic floor balance. She says her husband had a very poor reaction to her diagnosis; he lamented what would happen to him now that her sexual abilities were more restricted.
Thirty-seven-year-old Melissa L. says she believes she has had vulvodynia since she was a kid. When she first got her period, she passed out because she was in such tremendous pain. But it wasn't until 2006, when she developed a yeast infection that wouldn't go away, that she saw Dr. Elizabeth Stewart, a specialist in vulvovaginal issues at Harvard Vanguard Medical Associates. There Melissa was given the Q-tip test, and subsequently diagnosed with vulvodynia.
"I vividly remember Christmas 2006, crying all day with an ice pack on me," Melissa says. "I can't tell you how hard it is to manage that kind of pain. Imagine that at the opening of your vagina you've got the worst sunburn you've ever had."
Every single woman I spoke to said that, at some point during her struggle with vulvodynia, they described it as "the most agonizing pain I have ever experienced." Vaginas are not supposed to hurt; they are not supposed to be the source of prolonged, debilitating suffering. Many women do not know this and choose not to see a gynecologist or a sexual health specialist at all. Another young girl I spoke to said she met a woman at a vulvodynia support group who was in her late 80s. She had never told anyone about her pain her entire life. Not even her husband.
To say the treatment process for this issue is grueling is to put it lightly. Doctors explore countless methods in order to find the right one that works, which often results in a disheartening, frustrating, years-long ordeal. Medication is helpful to some women; others report that topical creams and oral pills exacerbate their symptoms. According to Jill Osborne, founder of the Interstitial Cystitis Network, pelvic floor physical therapy has been reported as one of the most effective treatment options.
Allie C. is a 36-year-old woman who didn't develop her condition until right around the time she got married, about five years ago, when she contracted an awful case of pneumonia. After being treated with antibiotics, she developed a chronic yeast infection, something her body was already prone to. Once the yeast infection was eradicated, she was left with a burning sensation around the entirety of her vulva. Before this particular yeast infection, she'd had no problems having sex, using a tampon, or sitting. But the vulvar symptoms persisted; the burning and itching spread to her labia, and sex became very painful. She began to seek help in January 2011, also with Dr. Stewart, who diagnosed her with vulvitis, a general term that refers to an inflammation of the vulva.
Imagine that at the opening of your vagina you've got the worst sunburn you've ever had.
Along with undergoing pelvic floor physical therapy, Allie also has to take a concoction of medications. While we spoke in her dining room, she placed several large orange plastic canisters in front of me on the table in a neat line. First were the suppository pills (medications she inserts into her vagina), which are a compound of lidocaine (a numbing pain reliever), baclofen (muscle relaxant), and diazepam (Valium). Her insurance does not cover these pills; the bag is $100. She also takes Tramadol HCL, which is used to combat flare-ups; trospium chloride to regulate bladder contractions; and Lyrica, a class C anticonvulsant and pain reliever that she takes once in the morning and twice at night. Her doctor has to negotiate with her insurance company to get these pills for her. Because the drugs are very sedating, she also takes Zoloft to manage depression and anxiety. Like Olivia, she couldn't empty her bladder because of her condition; she also felt severe burning along her C-section site after giving birth to her daughter. She has a lot of scar tissue in her uterus, which was pressing on her bladder and causing it to contract.
"There are so many life issues when you have this condition," Allie says. "When you finally get medical treatment, it can affect your ability to function the way you used to. I definitely can't function 100 percent cognitively on these meds."
On top of the debilitating chronic pain and maneuvering radical changes in lifestyle, women with vulvovaginal pain often have to deal with another battle that viciously runs parallel to their first, which is how to finance their care.
"I'm convinced that insurance companies are deliberately trained to fuck you over," Olivia says. She files claims on most of her medical treatments, which, after weeks and sometimes months of telephone tag and lengthy correspondence with insurance agents, would only occasionally result in meager reimbursements. "Dealing with getting coverage for this condition can feel like a fully-fledged full time job."
After trying antidepressant oral medication, the anticonvulsant Gabapentin (both oral and topical), and Lidocaine compound creams, Olivia sought the help of Dr. Andrew T. Goldstein (no relation to Dr. Irwin Goldstein) at the Centers for Vulvovaginal Disorders in New York City. Goldstein told her that she was a suitable candidate for a procedure called a vulvar-vestibulectomy, a surgery that removes painful nerve tissue from the vestibule of the vulva.
Here's the rough cost breakdown for her treatment: Including the surgeon's fee, the anesthesiologist fee, facility fee, airfare, AirBnB costs, ice packs for post-surgery recovery, and mattress covers to prevent a recovery mattress from getting stained with blood from the incision site, the total cost came out to about just under $15,000 after insurance covered some of the costs. When planning to undergo this kind of surgery, patients also need a significant other, family member, or friend to help, not only with transport to and from the hospital but also because the area needs iced most of the time (when you're not cleaning it the recommended four times a day). The logistics and price tag of the entire process from start to finish are massive.
Dealing with getting coverage for this condition can feel like a fully-fledged full time job.
"Who at our age is really going to have the kind of savings to pay for this care out of pocket?" Olivia asks.
Pelvic floor physical therapy is a pretty penny, too. Raquel Perlis is a certified—and highly recommended—pelvic floor physical therapist who works at a clinic in Wellesley, MA. Her practice accepted insurance for 17 years, but four years ago she switched to an out-of-pocket-only policy. Patients pay $140 a session to work with Perlis. Some patients are paying for two to three sessions a week, in addition to the cost of medications they may be taking concurrently.
"We spend an hour or more with the patient," Perlis explains. "Insurance can only cover a few minutes. It wasn't productive. We had to switch for the business."
Dr. Irwin Goldstein's practice also decided to go cash only because clinicians need to spend hours with the patients, and insurance does not cover a lot of that time.
"When you are someone who is beginning to seek help, you realize that most clinicians don't take insurance, and you think it's strange," Olivia says. "Then you realize this kind of thing takes a lot of time. You're in there for over an hour, and you can't bill for that amount of time."
While many women with vulvodynia have exhausted their options for pain relief and have, frustratingly, had to turn away from medical treatments entirely, some claim that non-medical mind–body care has helped them deal with pain management enormously. Dr. Lissa Rankin's book Mind Over Medicine: Scientific Proof That You Can Heal Yourself argues that the medical curriculum she learned while becoming a doctor was missing the crucial principle that the body is innately programmed to perform self-care and repair through the power of the mind.
One woman I spoke to praised a mind–body mentor and pelvic pain relief coach named Lorraine Faehndrich for helping her deal with both the physical and emotional aspects of her debilitating strain of vulvodynia. Founder of a program called Healing Female Pain based in Ithaca, NY, and a sufferer of vulvodynia herself, Faehndrich claims to have cured her condition through her own practice, which does not include medical intervention of any kind.
"I don't even take Tylenol for a headache," Faehndrich says. "The medical profession does not know how to deal with this. I stopped looking for answers outside of myself and started listening to my body."
Central to Faehndrich's methodology is the ancient Sanskrit word yoni. A literal translation of the word means "womb" and "vagina," but it can also signify birth, source, and origin. It's where the first chakra is, where chi and prana come into the female body, Faehndrich explains. A lot of women are disconnected from this part of their bodies, she says, and when they experience severe pain, they become even further disconnected from it.
"You can do drugs and have surgery, but if you are not addressing the deeper issues that may be underlying your tension, you are not addressing the problem," she says. "All pain, even though there's a precipitate, is created in the brain."
According to Faehndrich, emotions can have a huge effect on the body, especially if there has been some instance of trauma; Faehndrich believes that being sexually abused as a young girl contributed to her development of vulvodynia. That, and her Catholic upbringing, which instilled a permanent sense of guilt about her sexuality and traumatic past.
"A big goal is to stop looking for solutions out in the world and to start to bring attention inward," she says. "I teach women how to partner with their body and learn emotions as sensations."
Faehndrich charges $900 dollars a month for telephone and Skype therapy sessions, and she offers group sessions throughout the year.
Atara Schimmel is an artist and expressive arts therapist living with pudendal neuralgia. Eight years ago, she felt a "deep pinching" in her pelvic floor; it started around the time when she was doing a lot of aerobic exercise and kickboxing while she was living in Israel. For two years she lived with excruciating levels of pain that she describes as "electrocuting and mind-altering."
"I attempted suicide," she says. "At that point you want to jump out the window, and you're more concerned that you won't die."
Schimmel says that her pudendal neuralgia was not treated effectively until she sought out care through Dr. Assia Valovska at Brigham and Women's Hospital in Boston. "Before, I had a doctor who under-medicated me in central sensitization [a nervous system condition that keeps a patient in a persistent state of reactivity, or pain]," Schimmel says. "He did not know about the levels of torture I was telling him I was experiencing." After finally getting effective treatment, Schimmel began working with Dr. Valovska and Dr. Sandra Carson, the vice president of education at the American College of Obstetricians and Gynecologists (ACOG), to spread awareness about vulvodynia and associated pain disorders.
Part of the problem of treating vulvodynia is that many doctors misdiagnose or simply don't believe women when they complain of excruciating pain. Schimmel believes that women's sexual health reform can only happen once the medical community becomes more aware of the kind of pain women are enduring.
"Women have to start lobbying and getting these conditions into the medical curriculum," she says.
Most doctors are not conformable with dealing with sexual pain.
"It's amazing how easily we get disregarded," she continues. "Our pain doesn't get taken too seriously. We're coming in because we're in so much pain, and we leave with just bags of ice. There's a complete disconnect."
"Women's health is being attacked constantly," says Allie C., the 36-year-old who developed vulvodynia after she got married. She is now getting certified as a social worker so she can counsel women with conditions similar to her own. "I just find it interesting that Viagra is being passed out like candy to men with erectile dysfunction. Vulvodynia is also a sexual dysfunction for women."
Raquel Perlis brings up the example of politician Bob Dole, who notably raised awareness about prostate cancer in the early 1990s after he was diagnosed. Perlis believes it's going to take someone in the public eye to effectively raise awareness about any of these conditions in order for women to get insurance to cover their treatment.
Dr. Carson, too, has been fighting for women to get insurance coverage for vulval pain disorders for awhile, working to educate government officials and practitioners around the country about sexual disorders.
"The ACOG is constantly advocating for women to get coverage for these disorders," she says. "The political scene doesn't take them seriously. We are constantly advocating for women who have infertility issues as well."
"The unfortunate aspect is that most doctors are not conformable with dealing with sexual pain," says Dr. Irwin Goldstein. "In part it's lack of training—it's an area that has not become specialized until recently."
To Schimmel, the solution to this problem is more voices; she fights to get more women to speak openly about their sexual pain in hopes that the OB/GYN community will expand its awareness of and research on conditions like vulvodynia.
Perlis agrees. "Unfortunately this is still a man's world," she says. "The more outspoken women become, the better."