Imagine walking into the ER with your foot on the pedal saying, “My genitals hurt.” Now imagine your doctor looking at that gown and saying, “I’m sorry, but I don’t understand that.” Welcome to the world of Vulvodynia.
Vulvodynia is defined by the National Vulvodynia Association (NVA) as “chronic vulvodynia pain without an identifiable cause.” Vulvodynia affects about 16 percent of women. According to the description, this situation surprised the doctors. The NVA estimates that 60 percent of patients see at least three different doctors before being diagnosed with vulvodynia.
“I have patients who start crying when they hear the disease has a name,” says Nancy Phillips, MD, assistant professor at the Women’s Health Institute at the Robert Wood Johnson School of Medicine at Rutgers.
Finally, they tell Phillips that the genital pain is all in his head, and they’re not going to take it apart or treat it. They finally know what’s going on!
When we go to the doctor’s office and say, “I’m sick,” we wait for an answer, not the rush that causes us to seek a second, third, or even fourth opinion. However, doctors like Phillips, who specializes in vulvodynia, say their patients can’t help them after multiple visits to other doctors. So what’s going on?
What is vulvodynia?
Vulvodynia is defined by the National Institutes of Health as “chronic pain during intercourse (lasting at least 3 months) without a specific cause, such as infection or cancer.”
In case you don’t remember health class or “Orange Is the New Black” anatomy reviews, the genitals are pretty extensive. This term covers the external parts of the female reproductive system, including the labia majora, labia minora, clitoris, and the entrance to the vagina (which is often called the vestibule to distinguish it from the rest of the vagina).
Because it covers such a large area, doctors classify types of vulvodynia based on where someone feels the pain.
Local vulvodynia is felt only in one place. Most patients have this vestibule, Phillips says, but localized vulvodynia can occur anywhere in the vulvar region. To qualify for this category, the pain must remain there.
On the other hand, general vulvodynia is felt in all parts of the vagina. It is less common, but not serious for the sick.
Doctors follow a different classification after determining where the pain is. If you have vulvodynia, doctors want to know if you are “triggered” or “triggered.” In other words, is something sending a pain signal to the brain, or are you constantly experiencing pain or discomfort without any trigger?
Locally induced vulvodynia is the most common form, says Ryan Sobel, M.D., an assistant professor in the Department of Obstetrics and Gynecology at Thomas Jefferson University’s Sidney Kimmel College of Medicine and a specialist in benign vaginal disease. When the patient tries to insert a tampon, ride a horse, have sex, or wipe himself after urinating, touching the affected part of the genitals causes pain.
And these feelings can be intense.
If provoked, the pain is so intense that most patients are unable to have sex, Sobel said. In other cases, patients report a burning or raw sensation in the genital area.
Like most chronic pain conditions, vulvodynia isn’t visible to the naked eye, and doctors can’t do a blood test to confirm, “Yes, you have vulvodynia.”
In fact, most doctors rule out other conditions when making a diagnosis. They’ll look for yeast, cancer, STDs, and all the common STDs that cause pain in that area. They will check the pH level of the vagina, check for discharge and perform various tests.
Its definition is pain without a specific cause, so diagnosing sexually transmitted diseases, autoimmune diseases or other diseases allows doctors to rule out vulvodynia, but it becomes even more complicated. Some patients may have what is known as Sobel’s comorbidity, which means that the two diseases coexist. For example, a patient may have a yeast infection that has not been treated for a long time. After complete treatment of the infection, inflammation and pain may remain, which indicates vulvodynia.
Phillips says it’s no surprise that vulvodynia is so confusing to the medical community that it can be difficult to diagnose.
Experts struggle to determine the best treatment because the definition of vulvodynia means the pain has no known cause, leading doctors to debate the best course of action.
Just leave it.
Despite the confusion, experts in the field have options for vulvodynia sufferers. The condition is treatable, and the best approach depends on what is going on with the patient.
During the testing phase, doctors will look for hormone imbalances, Phillips said. Sometimes correcting these problems with treatment, especially testosterone therapy, can cause vulvodynia in response to testosterone.
For some patients, neuromodulators are added to the mix, Phillips said. Medications such as Cymbalta or Lyrica, commonly used to treat other chronic pain, can help some people with vulvodynia. These drugs work on the nerves that send pain signals to the brain, weakening the signals so that you can go to the bathroom or have sex without screaming in pain.
Other patients may receive physical therapy, where they can learn exercises to help relax the pelvic floor muscles. Some patients have tight vestibular muscles that are painful to the touch, and exercise and trigger point massage can loosen them, Phillips says.
For people with vulvodynia who don’t respond to these less invasive treatments, acupuncture or surgery are options, Sobel said. For patients with localized vulvodynia, a “vestibulectomy” can be performed, literally removing the area where the patient is experiencing pain. The success rate after these surgeries ranges from 50 to 90 percent of patients with pain relief.
As with pain, treatment success for vulvodynia varies from patient to patient. Some may never be pain-free, but a 70 percent reduction in pain is the key to significantly improving quality of life, Phillips said.
“Regarding Treatment: Painless or Effective?” Phillips said. should be asked. Any good news for women with vulvodynia? “Most people can work.”