What Is It?
Vulvodynia is chronic pain or discomfort of the vulva (the area surrounding the outside of the vagina) that lasts for three months or longer without any evidence of other skin or gynecological causes.
Vulvodynia ("vul-vo-din-ee-a") is chronic pain or discomfort of the vulva (the area surrounding the outside of the vagina) that lasts for three months or longer without any evidence of other skin or gynecological causes. Vulvodynia is usually characterized by burning, stinging, irritation or rawness of the area. The most common complaint is a burning sensation.
- Labia—the folds just outside the vaginal opening
- Vestibule—the portion of skin at the vaginal opening that contains the opening of the urethra, vagina and lubricating glands
- Perineum—the area between the vaginal opening and the anus
Some women experience discomfort of the entire vulvar area (generalized pain). Others have localized pain, which affects a specific part of the vulva, such as the vestibule or clitoris. Symptoms may be constant or come and go. The pain may be provoked by sexual and/or nonsexual contact (e.g., inserting a tampon, during a pelvic exam, wearing tight-fitting pants), unprovoked (spontaneous), or mixed (provoked and unprovoked).
The two types of vulvodynia are:
- Generalized vulvodynia—refers to generalized, unprovoked vulvar pain.
- Vestibulodynia, formerly called vulvar vestibulitis, which is characterized by pain experienced when pressure or touch is applied to the area surrounding the vaginal opening(the vestibule) In this case, the recurrent vulvar pain may be triggered by sexual activity, tampon insertion or gynecological exams, when wearing tight-fitting pants or even when sitting.
It is estimated that approximately 15 percent of women will suffer with chronic vulvar pain at some point in their lives. Still, vulvodynia remains poorly understood and is often misdiagnosed.
Many women suffer with unexplained vulvar pain for months—even years—before a correct diagnosis is made and an appropriate treatment plan is determined. A Harvard study funded by the National Institutes of Health found that 60 percent of women who suffer from the condition consult at least three health care professionals in seeking a diagnosis, and 40 percent of those still remained undiagnosed. The study emphasizes how important it is for women to be persistent in seeking an accurate diagnosis so they can receive appropriate treatment.
While vulvodynia affects women of all age groups, the onset of symptoms is most common among women between the ages of 18 and 25. Although vulvodynia was once thought to affect mainly Caucasian women, recent studies have shown that Hispanic and African American women are equally likely to develop the condition.
Causes and Risk Factors
There is no simple answer to the question, "What causes vulvodynia?" We do know that it is not caused by infection, the human papillomavirus (HPV) or other sexually transmitted diseases, cancer or generalized neurologic disorders. It can only be diagnosed after other causes of vulvar pain, such as infection, dermatitis or atrophy have been ruled out or if the pain continues despite successful treatment of any identified disorders.
Early difficulty or pain when using tampons may represent a primary form of vulvodynia. Research shows the following may contribute to vulvodynia:
- pelvic nerve damage or irritation
- spasms or weakness of the muscles that support the pelvic organs
- abnormal response of cells in the vulva to environmental factors, such as infection or injury
- altered hormone receptor expression in the vulvar tissue
- increased density or increased sensitization of vulvar nerve fibers
- genetic factors, including susceptibility to inflammation
- recurrent yeast infections
- previous laser treatments or surgery external to the vagina
Impact on Quality of Life
Vulvodynia can cause significant physical, sexual and psychological distress. Women who suffer with vulvodynia report difficulties exercising, being intimate and taking part in other daily activities. Even sitting for long periods of time can trigger vulvar pain episodes in some women.
According to an NIH-funded study done at Rutgers Robert Wood Johnson Medical School and reported by the National Vulvodynia Association:
- Seventy-five percent of women with vulvodynia feel "out of control" of their bodies.
- Sixty percent say the condition interferes with their enjoyment of life.
Almost two out of three (60 percent) of women with vulvodynia cannot have sexual intercourse because of the pain. The sheer anticipation of vulvar pain can heighten anxiety and lead many women to avoid sexual intercourse. Refraining from sex affects a woman's self-image, and the repeated episodes of pain combined with anticipation of pain may also result in spasms of the muscles around the vagina (vaginismus), making it even more difficult to achieve vaginal penetration.
In addition, some women with vulvodynia may be burdened by other health problems, including interstitial cystitis, fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome, temporomandibular joint or muscle disorders.
Lack of awareness about this condition among medical professionals, coupled with the stigma women associate with genital disorders, makes diagnosis and treatment more challenging. As a result, many women are left not knowing why they have such severe, often debilitating vulvar pain, which can strain a couple's sexual relationship.
Some women are hesitant to discuss sexual issues with their health care providers, while others who do sometimes report being told the pain is "all in your head." Communication and education are essential for correct diagnosis and treatment of this disorder.
If untreated, chronic pain can lead to:
- low self-esteem
- reduced quality of life
And the severity of the pain can worsen when women with this condition are stressed, depressed or anxious.
Vulvodynia is poorly understood and, as with many pain conditions, can be difficult to diagnose. Vulvodynia is diagnosed when other causes of vulvar pain, such as infections, skin problems or neurologic disorders, are evaluated and ruled out.
Women with vulvodynia often report having one or more of the following symptoms in the vulvar area:
- burning (most common symptom)
To make a diagnosis, your health care professional will begin by reviewing your medical history. He or she will ask you specific questions about your symptoms, treatments you may have already tried, your menstrual cycle, feminine hygiene, sexual history, previous medical problems or surgeries, as well as any medications you use (including over-the-counter medicines). You should also discuss any difficulties you have using tampons or having sexual intercourse. Your health care provider will then do a pelvic exam and carefully inspect your vulva. He or she may order blood tests and/or take a sample of discharge from your vagina to check for yeast or other infections that could be causing your symptoms.
A cotton swab test is often used to map vulvar pain. For this evaluation, your doctor will use a moist, cotton-tipped swab to place pressure on various parts of the vulva to identify the location and intensity of your pain. You will be asked to rate the extent of the pain at each site; for example, how would you describe the pain on a scale of 0 to 10 (no pain to extreme pain)? Your health care professional may use a diagram to visually note where you feel discomfort, as well as the degree and nature of the pain, such as burning, throbbing or stabbing. A positive cotton swab test (one that causes significant pain, especially in the vestibule) most strongly suggests the diagnosis of vulvodynia.
Your doctor may use a large magnifying instrument (called a colposcope) to take a closer look at the vulvar skin. While there may be redness and inflammation, vulvar skin usually appears normal in women with vulvodynia, despite the occurrence of pain. Any abnormal appearing areas may need biopsy to rule out other disorders.
Describing Your Pain
Be sure to clearly describe your pain, including its:
- onset (When did the pain begin, and did it start gradually or all of a sudden?)
- location (Where do you feel pain? Is it isolated to a certain part of the vulva?)
- frequency/duration (When do you feel pain? Is it constant or does it come and go? How long have you had vulvar pain?)
- nature/type (Is it aching, burning, stabbing?)
- severity (On a scale of 0 to 10, 10 being the worst pain you can imagine, how bad has your pain been?)
Explain how chronic vulvar pain impacts your daily life. Are there certain activities you avoid, such as exercise, use of tampons or sex? You may want to keep a pain diary with detailed information about your pain—when it occurs and for how long, things that make it better or worse and any other symptoms. This can provide important clues and will help your health care professional make a diagnosis.
There are treatments available to provide symptom relief. These may include a combination of advice on vulvar skin care, oral and/or topical medications, physical therapy and biofeedback training, dietary modifications, counseling and, in some cases, surgery. Adjunct therapies, such as acupuncture, massage therapy and cognitive behavioral therapy, are also being explored.
There is no known cure for vulvodynia. The main goals of treatment are to manage your pain, improve your quality of life (e.g., restore a healthy sex life and reduce anxiety), and prevent the recurrence of symptoms. The chronic nature and complexity of vulvodynia often require multiple treatment strategies. Finding the right treatment or combination of therapies may take some time, especially because each woman's symptoms and response to treatment are different. Your health care provider will recommend a treatment approach based on your condition(s), level of pain and preferences.
Available Treatment Options
The following section provides a snapshot of available treatments that have been beneficial in reducing pain symptoms (listed in no particular order):
Basic vulvar care. These suggestions will be helpful in all women, not just those with vulvar pain. Some common suggestions for vulvar care include:
- wearing cotton-only underwear
- avoiding tight-fitting pants and panty hose
- using unscented cotton pads and tampons
- keeping harsh soaps and shampoos away from the vulva area and not using douches
- using plenty of water-soluble lubrication during sexual intercourse
- patting the area dry after rinsing and urination
Medications. Oral and/or topical medications, including topical anesthetics (lidocaine ointment), estrogen, anticonvulsants, and certain types of antidepressants may be prescribed for chronic pain.
Topical anesthetic ointments provide quick, temporary pain relief and comfort and may be used overnight or applied 15 to 20 minutes before sexual activity or throughout the day as needed.Ice packs also provide temporary relief and may be helpful when you can't avoid sitting for long periods, such as lengthy car rides.
Topical estrogens, and occasionally testosterones, may be used in women who are estrogen deficient, such as women who are postmenopausal or those who are premenopausal and take certain medications that lower estrogen levels.
Low doses of tricyclic antidepressants may be recommended to treat vulvodynia because of their pain-blocking properties, particularly amitriptyline (Elavil), desipramine (Norpramin) and nortriptyline (Pamelor). Gabapentin, an antiseizure medication, is effective for pain relief in some women and offers an alternative to women who are unable to use tricyclic antidepressants or have side effects from them. Pregabalin (Lyrica), which is used to treat nerve and muscle pain, also may be considered. A newer class of antidepressants, known as SSNRIs (Effexor, Cymbalta), have also demonstrated benefit with fewer side effects for some women than the tricyclic antidepressants; however their use in women with vulvodynia has not been well studied. Like the older tricyclic class of antidepressants, these medications can also help relieve symptoms of depression.
Ask your health care professional about various medications and their common side effects. When using certain medications, keep in mind it can take up to six to eight weeks for symptoms to improve, and that you will not necessarily achieve complete relief.
Physical therapy and biofeedback training. Some women have associated spasms or weakness of the pelvic floor muscles that may either contribute to the vulvar pain or develop due to the pain. Your health care professional will evaluate your pelvic floor muscles and may refer you to a pelvic floor physical therapist for full evaluation of the muscles, joints and nerves in the pelvic area. Treatments may include exercises, education and manual therapies, such as massage. Ultrasound and hot/cold and electrical stimulation may also provide some relief. Biofeedback, which helps you enter a relaxed state to reduce pain and teaches you control of the contraction and relaxation of the pelvic muscles, is an integral part of the physical therapy. Learned control of these muscles will aid in situations where pain may occur, such as intercourse or a pelvic exam, by allowing conscious relaxation of these muscles to occur.
Relaxation and breathing techniques. Like biofeedback, learning to recognize when you are tensing your pelvic floor muscles due to stress and then learning specific relaxation techniques to reduce stress and anxiety can help alleviate pain.
Diet modifications. Talk with your provider about the pros and cons of eliminating certain types of foods from your diet, such as those high in oxalates or sugar. To test for food sensitivity and to determine which foods, if any, are affecting you, eliminate one food or food group at a time. Use a food diary to record your results—you might begin to notice an association between your symptoms and certain foods you wouldn't have otherwise suspected. This may be especially helpful in women who also have interstitial cystitis.
Nerve blocks. Injections of lidocaine or lidocaine plus a steroid may provide at least temporary and sometimes long-term relief from vulvar pain. These injections may be local into trigger points or especially tender areas at the entrance or a short distance in the vagina, or they may be aimed at the larger, pudendal nerve, which carries most of the nerves from the vulvar area to the spinal cord. The pudendal block can be performed through the vagina (with the injection into the area at the top of the vagina, near the cervix) or through the buttocks (this is usually done by an anesthesiologist trained in pain control, not a gynecologist).
Women who have a muscle spasm as the primary contributing cause to the vulvar pain may benefit from Botox injections into the affected muscle.
Neurostimulation and spinal infusion pump. If other treatment forms haven't helped and your pain is severe, your health care professional may have you consult with a professional skilled in neurostimulation or in the use of a spinal infusion pump. With neurostimulation, an electronic device delivers low-voltage electrical stimulation to a targeted nerve or the spinal cord in an attempt to substitute a tingling sensation for pain. A spinal infusion pump is an implanted device that constantly administers a small dose of medication to the spinal cord and nerve roots to help dull pain. Experience treating vulvodynia with these interventions is limited.
Surgery. Women with severe vulvodynia localized in the vestibule who have failed to find relief with other remedies may consider vestibulectomy, a surgical procedure that removes the painful tissue of the vulvar vestibule. This surgery is usually reserved only for women with vulvar vestibulitis who have not responded to more conservative therapies and understand that, despite the surgery, the pain may not resolve afterward.
Counseling. Vulvodynia can limit daily activities, interfere with interpersonal and intimate relationships and diminish quality of life. Women who suffer with chronic vulvar pain may also experience depression and feelings of low self-worth. Regardless of what strategies are being employed to manage the vulvar pain, psychological counseling can help women develop coping strategies and deal with sexual intimacy issues. For many, it is a valuable part of their overall treatment plans. Cognitive behavioral therapists or individual, marriage or sex therapists may be considered.
Talk with your health care professional about which treatments are right for you.
Because we don't know what causes vulvar pain, we really don't know how to prevent it. But there are some things you can do to help minimize your pain. As always, talk with your health care provider about what's best for you.
Check your environment and follow basic vulvar skin care. If your vulvar pain symptoms come and go, think about what that area is exposed to. Do you use a lubricant during intercourse? Have you switched laundry detergents? Are symptoms worse when you wear a certain kind of underwear or use a certain brand of sanitary pad? Try changing one thing at a time and see if it helps. Keeping a symptom calendar may help uncover a pattern of pain.
Don't miss your annual exam. Routine pelvic exams—once a year for women age 18 and older—are very important to ensure early intervention for problems, including chronic pelvic and vulvar pain. Annual gynecologic appointments may include breast exams, Pap tests and other important preventive screenings, such as cholesterol screening and thyroid tests. These visits give you the opportunity to discuss any gynecological concerns or symptoms with your provider.
If you experience vulvar pain, don't wait. Make an appointment to discuss your symptoms with your health care professional. If you don't think your pain is being recognized or managed, find a local specialist in vulvar disorders.
Facts to Know
- Vulvodynia is chronic pain or discomfort of the vulva (the area surrounding the vaginal opening) that lasts for three months or longer in the absence of other skin or gynecological disorders.
- Women who suffer with vulvodynia report burning, stinging, irritation and rawness in the area. For some, this pain affects the whole vulva, for others it is localized to one area. Pain may be constant or episodic, often when triggered by tampon insertion, sexual activity or exercise, especially bicycling.
- Vulvodynia can be difficult to diagnose. It's not uncommon for women to see multiple doctors before getting an accurate diagnosis.
- It is estimated that approximately 15 percent of women will suffer with chronic vulvar pain at some point in their lives.
- There is no known cause of vulvodynia. However, we do know it is not caused by an active infection, including sexually transmitted diseases; skin disorders; cancer; or generalized neurologic or psychological disorders.
- Diagnosis includes a cotton swab test in which the doctor places pressure on different parts of the vulva area to locate the pain and its relative intensity.
- As with other chronic pain conditions, the unrelenting nature of vulvodynia has a negative impact on a woman's quality of life and ability to perform daily activities. The challenges encountered in its diagnosis and treatment may lead to depression, anxiety, fatigue and low self-image, especially related to a woman's sexuality.
- There is no "cure" for vulvodynia. The goal of treatment is to manage pain, restore normal activities, and improve quality of life.
- Treatment may include a combination of advice on vulvar tissue care, oral and/or topical medications, nerve blocks, physical therapy, biofeedback, dietary modifications, counseling and, in some cases, surgery. Many therapies recommended to promote general health may also be recommended with traditional medical approaches for people in chronic pain. These therapies include acupuncture, massage therapy, relaxation techniques, biofeedback and cognitive behavioral therapy.
- The aim of ongoing research is to determine the causes of vulvodynia and to find more effective ways to identify and treat chronic vulvar pain.
Questions to Ask
Review the following Questions to Ask about vulvodynia so you're prepared to discuss this important health issue with your health care professional.
- Why am I having pain? Do I have a condition that is causing the pain?
- Do I need any tests to diagnose why I have pain?
- What topical or oral medications can you prescribe that will relieve my pain? What are the side effects?
- Are there nondrug, nonsurgical therapies that can reduce my pain and improve my condition?
- When can I expect the pain to subside?
- What can I do to cope with the pain and continue to lead an active lifestyle?
- What steps should I take to reduce vulvar irritation?
- What should I tell my partner about my condition?
- Is there a pain management specialist to whom you could refer me?
- Are there support groups for vulvodynia? Where can I get more information?
- What is vulvodynia?
Vulvodynia is chronic pain or discomfort of the vulva, the area surrounding the vaginal opening. It is diagnosed when pain lasts for three months or longer without any evidence of other skin or gynecological disorders that might cause the pain. Approximately 15 percent of women will suffer with chronic vulvar pain at some point in their lives.
- Do we know what causes it? Is it due to an infection?
We don't know what causes vulvodynia, although it is likely due to multiple factors. Some factors that may contribute are pelvic nerve damage, spasms or weakness of pelvic muscles and genetic components such as susceptibility to inflammation. We do know that vulvodynia is not caused by active infection, the human papillomavirus (HPV) or other sexually transmitted diseases or cancer.
- What are the symptoms of vulvodynia?
Women with vulvodynia often report having one or more of the following symptoms around the vulva:
- What triggers the pain?
Some women experience constant, generalized pain of the whole vulva area. Others have localized pain specific to one part of the vulva that may come and go. Vulvar pain may be triggered by sexual activity, tampon insertion or gynecological exams, or simply by wearing tight-fitting pants or sitting. Take note of what things make your pain better or worse and share this information with your health care professional, so he or she has a better sense of the location and intensity of your pain and how it impacts your overall and sexual health.
- How is it diagnosed?
Vulvodynia is a "diagnosis of exclusion." That is, it is established after other potential causes of vulvar pain have been ruled out, including such things as yeast or bacterial infections. Most women see multiple health care providers before a correct diagnosis is made.To diagnose vulvodynia, your doctor will first take a complete medical history, including the duration and intensity of the pain, sexual health, treatments already tried and previous medical problems and pelvic/abdominal surgeries. A pelvic exam will follow. A cotton swab test that applies pressure to various parts of the vulva is often used, especially for women whose pain is provoked by pressure on the vulva. You will be asked to rate the extent of the pain at each site so your provider can map your pain.It's important to talk openly with your health care professional about any difficulties you have exercising, using tampons or having sexual intercourse, so he or she knows how the pain impacts your daily life.
- What are the treatments for vulvodynia?
There is no cure for vulvodynia, but there are a variety of medications and nondrug therapies. Medications may include topical anesthetics, hormone therapy, oral antidepressants, anti-seizure medications and nerve blocks. Other options include pelvic floor physical therapy, biofeedback, dietary changes, counseling and, in select cases, surgery. Acupuncture, massage therapy, relaxation techniques and cognitive behavioral therapy, which often are recommended as treatments for other conditions causing chronic pain, may play a role in your overall care. No single approach works for all women. It often takes time to find a treatment or combination of therapies that will adequately alleviate the pain.
- What should I tell my partner?
Many women find it difficult, if not impossible, to engage in vaginal penetration due to the severity of what is sometimes described as "knife-like pain." Since this condition significantly affects your sexual relationship, it's important to educate your partner about this condition and how it affects you, both physically and psychologically. Be honest and open about how you feel, the steps you are taking to alleviate the pain and ways your partner can support you. You may feel embarrassed to broach the subject, but it's important for your peace of mind and for your significant other to feel involved in the process. Counseling with a sexual therapist is often helpful for couples dealing with vulvodynia.
- A Combination of Therapies Works Best
Pain relief may not happen quickly. It may take several weeks for you to notice an improvement in the pain. Complementing drug therapy with physical therapy, biofeedback, sex therapy and psychological counseling may further improve pain control. There is no single effective treatment for women with vulvodynia. Ask questions if you don't understand the recommended treatment plan.
- Basic Vulvar Skin Care
There are simple steps you can take to reduce vulvar irritation. Here are a few tips:
- Wear 100 percent cotton underwear.
- Avoid tight-fitting pants; don't wear pantyhose.
- Use plenty of water-soluble lubricant with all sexual activity.
- Steer clear of perfumed creams or soaps, pads or tampons and contraceptive creams or spermicides.
- Don't use douches or vaginal wipes.
- Refrain from exercises that are likely to place added pressure on the vulva, such as bicycling and horseback riding.
- Exercise and Eat Right
Regular exercise improves circulation and increases the production of natural pain-relieving substances (endorphins) in your body. By staying active, you will also reduce your chances of increasing pain due to tight muscles. Be sure to talk with your doctor about which exercises are best for you, especially if your vulvar pain is provoked by certain types of physical activity.
- Get the Emotional Support You Need
Chronic vulvar pain can be debilitating and often interferes with daily activities and sexual relations. Many women with episodic vulvodynia become anxious and worried about their next pain flare-up. While chronic vulvar pain can be an embarrassing topic, it's important to try to talk openly about it with your partner. Don't let the pain overshadow you. Continue to engage in activities you enjoy even if you need to cancel or cut back some days. If you feel sad for several weeks at a time, you may be depressed. Common signs of depression include:
- sustained sadness, anxiety, irritability or boredom
- loss of interest or pleasure in activities that were once enjoyed
- noticeable changes in eating and sleeping habits
- withdrawal from family, friends and social activities
- difficulty thinking, concentrating or remembering and an inability to complete schoolwork
- feeling guilt, hopelessness, emptiness
- physical symptoms such as headaches, stomach upsets or pain that doesn't respond to treatment
- Relax to Reduce Stress
Managing stress and learning to relax are important parts of any pain relief program. Stress appears to contribute to many chronic conditions, including chronic vulvar pain. Stress can increase blood pressure, reduce the immune system's ability to fight infection, and affect hormone production, including turning on cortisone production in the adrenal glands and upsetting the balance between estrogen and progesterone. There are many relaxation techniques you can easily learn and practice at home, including focusing (what women in labor are advised to do), meditation, deep breathing exercises and progressive muscle relaxation. Learning biofeedback techniques takes much more training, but biofeedback is sometimes recommended for women with vulvodynia to learn how to relax pelvic muscles, which can contract in anticipation of pain, thus causing chronic pain. You can download apps to your smartphone that can guide you through deep breathing or meditation with instruction, reminders and exercises.
Organizations and Support
For information and support on coping with Vulvodynia, please see the recommended organizations and books listed below.
American Chronic Pain Association
Address: PO Box 850
Rocklin, CA 95677
American College of Nurse-Midwives
Address: 8403 Colesville Road, Suite 1550
Silver Springs, MD 20910
The American College of Obstetricians and Gynecologists
Address: PO Box 96920
Washington, DC 20090
International Pelvic Pain Society
Address: 1100 E. Woodfield Road, Suite 520
Schaumburg, IL 60173
International Society for the Study of Vulvovaginal Disease
Address: 8814 Peppergrass Lane
Waxhaw, NC 28173
National Library of Medicine
Address: 8600 Rockville Pike
Bethesda, MD 20894
National Pain Foundation
National Vulvodynia Association
Address: PO Box 4491
Silver Spring, MD 20914
Office of Research on Women's Health
National Institutes of Health
Address: 6707 Democracy Blvd. Suite 400
Bethesda, MD 20892
Vulvar Pain Foundation
Address: 203 1/2 North Main Street, Suite 203
Graham, NC 27253
Phone: (336) 226-0704
Ending Female Pain: A Woman's Manual: The Ultimate Self-Help Guide for Women Suffering from Chronic Pelvic and Sexual Pain
by Isa Herrera
The Vulvodynia Survival Guide: How to Overcome Painful Vaginal Symptoms and Enjoy an Active Lifestyle
by Howard I. Glazer, Gae Rodke
Secret Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships
by Susan Bilheimer, Robert J. Echenberg
Private Pain: It's About Life, Not Just Sex
by Ditza Katz, Ross Lynn Tabisel
The V Zone: A Woman's Guide to Intimate Health Care
by Colette Bouchez