WELCOME TO VULVODYNIA VIDEO EDUCATION
Everything you need to know to decrease pain and improve quality of life.
WHAT YOU NEED TO KNOW
Pain education makes a difference
This website contains videos that provide an overview of vulvodynia causes and treatments and gives you information needed to manage your pain and improve your life!
We recommend that you watch the videos in sequence.
WHAT IS VULVODYNIA?
Vulvodynia is pain in the vulva (entrance of the vagina) that lasts longer than 3 months and is considered a long-lasting, chronic pain condition. Generally, vulvodynia is not helped by usual treatments and may cause severe bodily, emotional and social disability. More than 14 million women suffer with this type of pain, yet few have access to a clinician who knows a lot about vulvodynia. Studies show that living with untreated chronic pain can lead to feeling tired all the time, and having difficulty with sleep, thinking, relationships, sex, and social life. Many women with vulvodynia live isolated lives to avoid being stigmatized, and they suffer for many years before finding help.
For more on vulvodynia, you can also visit the National Vulvodynia Association website.
WHAT CAUSES VULVODYNIA?
Vulvodynia is caused by a combination of factors happening in the vaginal area, the neurons and the brain. For example, the pain can start after some type of injury or inflammation in the vagina including:
chronic inflammation or vaginal infections that do not respond to anti-microbial therapy,
an injury to the vaginal skin, muscles or neurons that transmit sensation from the vulva to the brain,
allergies or autoimmune conditions such as lichen sclerosus, lichen simplex chronicus, and lichen planus,
pelvic floor muscle spasm or contraction (this is often the cause of pain during intercourse),
neurologic conditions such as pudendal neuralgia and post-herpetic neuralgia
hormonal factors such as low estrogen levels.
Symptoms can be worsened by psychological distress such as anxiety, depression, poor coping and relationship distress. More recently, researchers have discovered that more than 80% of women with chronic vulvar pain have vaginal muscle tenderness. They speculate this to be the reason why so many women with this type of pain experience pain during intercourse and why generally pelvic floor physical therapy helps manage the pain. About 20% of women with vulvodynia also have other chronic pain disorders such as irritable bowel syndrome (IBS), interstitial cystitis or bladder pain syndrome (IC/BPS), temporomandibular joint disorders (TMD), fibromyalgia, migraines, chronic tension type headache, chronic low back pain (CLBP), and chronic fatigue syndrome (also known as Myalgic Encephalomyelitis).
For more on Chronic Overlapping Pain Conditions (COPCs) visit the Chronic Pain Research Alliance website.
WHAT ARE THE SYMPTOMS OF VULVODYNIA?
In general, women with vulvodynia may experience burning, sharp, raw, stinging or knife-like pain at the vaginal opening. Some can have pain all the time while others may only experience pain when the vulva is touched by clothing, a tampon or other activities such as intercourse or vaginal examination. It is important to note that each woman’s experience is unique, and symptoms can range from mild to incapacitating. Because the vagina is composed of skin, nerves and muscles, pain that is felt in the vaginal area may originate from any of these structures. Additionally, pain can occur not only with light touch of the skin, but also during intercourse, sitting, standing, defecation or urination. Furthermore, in cases of severe muscle involvement, women can also experience urinary leakage, urgency, frequency or even constipation.
HOW IS VULVODYNIA DIAGNOSED?
To find everything that is contributing to the pain, clinicians do what is called a biopsychosocial examination, where you will be asked about various factors that influence your pain including your medical, surgical, psychological and social history. This assessment includes evaluation of pain burden, physical examination, and diagnostic testing. Sometimes taking a full history involves more than one visit with the clinician. It is important to note that there is no one definitive test that can diagnose vulvodynia. Instead, providers rely on first excluding obvious causes for pain that can be easily treated. The diagnosis is made when there is no obvious, or easily treatable cause, and a combination of symptoms that can include chronic pain, physical or emotional disability and sexual dysfunction. Imaging (such as X-rays, ultrasound, MRI or CT scan), blood tests, hormonal tests and biopsies are rarely used since they have not been shown to help diagnose vulvodynia.
HOW IS VULVODYNIA TREATED?
Many treatments are available to manage specific causes of vulvodynia. For example, antifungals can be used to treat pain that is due to chronic yeast infections and steroids are used for pain that comes from vaginal skin disorders such as lichen sclerosus. However, regardless of the original cause of the pain, there are additional ways of controlling pain, ranging from less invasive methods such as pain-relieving medications, physical, psychological nutritional therapies, anesthetic injections and nerve blocks, to more invasive methods such as spinal cord stimulators and surgery.
It is essential to identify all factors that play a role in your pain and, with the help of your provider, develop a comprehensive treatment plan that goes beyond medications. Similarly, related conditions, such as sleep, fatigue, cognitive difficulties and mood disorders, should be managed with various therapies available.
WHAT CAN YOU DO TO HELP MANAGE THE PAIN?
Self-help therapies are things that you can do to reduce the pain associated with vulvodynia. Self-help strategies are a very important part of therapy, and they include:
Eliminating over-the-counter feminine products, such as perfumed bubble baths, soaps, and douches that can irritate vulvar tissue.
Eliminating certain foods if you notice they increase your pain and that eliminating them relieves pain.
If you have a lot of vaginal irritation or burning discharge, change your clothing and laundry habits. Wear all-white cotton underwear, skirts or loose-fitting pants and thigh-high or knee-high hose instead of pantyhose. Remove wet bathing suits and exercise clothing promptly. Use dermatologically approved detergent for sensitive skin. Double rinse any clothing that touches the vulva.
Avoid over washing the vagina. Once a day is enough to maintain vaginal health.
During intercourse, use a water-soluble lubricant that does not contain propylene glycol.
Ask your clinician to prescribe a topical anesthetic, e.g., lidocaine, to be applied 5 to 10 minutes before intercourse.
Avoid exercises that put direct pressure or excessive friction on the vulva, e.g., bike riding.
You are an important member of your health care team so actively participate in your care. Educate yourself about your condition and don’t hesitate to ask questions.
HOW CAN PSYCHOLOGICAL THERAPIES HELP VULVODYNIA?
In the beginning, it is common for women with vulvodynia to feel that the pain has taken over their life. To overcome feeling helpless and regain control, accept your pain and understand that although there is no quick, one fix cure, you cannot let your physical limitations define you or keep you from participating in your life. Focus on your strengths and other positive things that you can do, instead of dwelling on what you cannot do. Maintaining a positive attitude takes patience and practice, but it makes a difference in your recovery. Negative thoughts such as rumination (focusing attention on your symptoms) and catastrophizing (always imagining the worse situation) can cause anxiety, depression, and promote inactivity, which can intensify pain. In general, it is most helpful to combine self-help strategies and psychological therapy in order to achieve the best results.