Have you ever felt like you have a yeast infection only to be told by your doctor that no yeast is present? Are there moments when wearing jeans or underwear are uncomfortable or painful? You may have vulvodynia, vulvar pain that lasts for three months or longer without an obvious cause. In the IC patient population, particularly those who struggle with central sensitization, vulvodynia is a well known related condition. Vulvodynia is one of the common overlapping chronic pain conditions along with IC, IBS, vulvodynia, fibromyalgia, migraine, chronic back pain and TMJ.  An estimated  16% (13 million) of women in the USA suffer from vulvodynia during their lifetime.(1)

Symptoms and Subtypes

The vulva is comprised of your labia, clitoris, the entrance to your urethra (meatus) and vagina (vestibule).(2) The most common description of vulvodynia pain is a burning sensation, but the pain can vary. ICN Founder Jill Osborne struggled with severe vulvodynia in her twenties. She has said “It felt like someone has scrubbed off the skin on my vuvla with sandpaper, especially on the perineum. There were days when I could not wear jeans without pain. I literally wore long skirts or dresses without underwear for years.”  The location of the pain can also be different for different women. Some feel discomfort in only one specific area, while others feel it in multiple areas throughout the vulva.(3)

Vulvodynia has two main subtypes: localized and generalized. Localized vulvodynia, meaning you have pain at only one vulvar site, is the most common of the two. If the pain is specific to the vestibule (the tissue around the vaginal opening), the diagnosis is vestibulodynia, which used to be called vulva vestibulitis syndrome.

Most women who have localized vulvodynia also have provoked vestibulodynia (PVD), meaning the vestibule pain occurs during or after applying pressure to the area. This pain can be caused by sexual intercourse, tampon insertion, sitting for a long time, a pelvic exam and/or wearing fitted pants. PVD has two classifications as well. Those who have had vestibular pain since their first attempt at vaginal penetration are classified as having primary PVD. Women who had pain-free sexual intercourse previous to symptoms starting are classified as having secondary PVD.(4)

Generalized vulvodynia is the other subtype for women who have vulvar pain spontaneously and regularly. Symptoms can be aggravated by applying pressure to the vulva. The pain can be in one specific area or in multiple areas.

Because both types of vulvodynia can be either provoked or worsened by pain in the vulvar area, sexual intercourse is usually painful for vulvodynia patients. In fact, vulvodynia is the leading cause of painful sex for premenopausal women. Patients with vulvodynia may have an inflamed or swollen vulva, but their vulva can also appear completely normal.

Causes and risk factors

Researchers are still trying to determine the cause of vulvodynia. So far, it doesn’t seem to be caused by infections, including sexually transmitted diseases.  Possible causes being researched include the following:

  • Estrogen atrophy
  • A nerve injury or irritation to the nerves that transmit pain signals from the vulva to the brain
  • Having a higher number of pain-sensing nerve fibers in the vulva
  • Chronic inflammation in the vulva
  • An abnormal response to infection or trauma
  • Being genetically susceptible to the condition
  • Having chronic widespread pain
  • Having a weak pelvic floor or other form of pelvic floor dysfunction(5)

While vulvodynia affects women of all ages and ethnicities, it does have some risk factors that make women more predisposed to having the condition. Those who have other chronic pain conditions like IC, fibromyalgia, IBS and temporomandibular disorder, are at an increased risk for having or developing vulvodynia. Other possible risk factors are anxiety, depression, a history of abuse and post-traumatic stress disorder.

Diagnosis

Your doctor will start with asking questions about your symptoms and your medical history. Then he or she will perform a pelvic exam to look both inside and outside of your genital area for anything that might be causing your symptoms. He or she should test for yeast and bacterial infections. If any area looks suspicious, he or she may choose to take a small piece of tissue to examine further and biopsy.

Your doctor may also chose to send you for bloodwork to check your hormone levels. The final component of diagnosing vulvodynia is a cotton swab test. The doctor will use a cotton swab and apply gentle pressure to various areas of the vulva while asking you to rate the severity of pain each time.(6) This will help him or her best assess whether you have vulvodynia, what subtype you have and get an idea of treatment options that might be best for you.

Self-help Treatments

Many of the self-help treatments for vulvodynia are good practices for pelvic health in general. Even if you don’t suspect you have vulvodynia, some of these suggestions can help keep your vulva free of irritation and additional pain or discomfort. Figuring out what is irritating your vulvodynia symptoms and eliminating those things is the first step in treating vulvodynia.

Be aware of what you wear

Keeping your vaginal area cool and dry is important. The best underwear is 100% cotton, white undies. And opt to sleep without underwear at night to help lessen irritation. You’ll also want to avoid clothes that fit tightly in the pelvis and vulvar area. Instead of wearing pantyhose or tights, opt for thigh- or knee-high options. Also be sure to remove wet clothing after swimming or exercising right away.(7) Be cautious, as well, of scented menstrual pads which can irritate and/or overly dry the skin. Always look for cotton pads instead and don’t wear a pad if you don’t need one. The vulva is meant to be moist.

Pay attention to how you get clean

When it comes to both laundry and personal hygiene, you need to pay attention to what products you’re using and how you’re using them. Look for a gentle laundry detergent approved by dermatologists (i.e. Such as Seventh Generation Free and Clear Unscented) and then double-rinse your underwear in the wash. Don’t use fabric softener on your underwear either.

For cleaning yourself in the restroom, use soft, white and unscented toilet paper. Urinate before your bladder is completely full then rinse your vulva with cool water afterward. Use only 100% cotton menstrual pads and tampons. In the shower, don’t use bubble bath or allow any other soap (including shampoo as your rinse your hair) to get into your vulvar region. Clean the area with cool to lukewarm water only.(8) (The ICN Store offers a variety of gentle, feminine hygiene products as well.)

If you’re in a flare, you can apply a thin coating of petroleum jelly or coconut oil to your vulva after showering to create a barrier between your clothes and your skin. While you want to avoid hot tubs and highly chlorinated pools, you can instead soak in a sitz bath for five to 10 minutes a few times a day for symptom relief. Jill’s elderly mother Helen also struggles with age related estrogen atrophy and vulvodynia and finds  Aveeno Soothing Bath Treatment very helpful.

Eat and drink the right things

Quite a few of the same foods and beverages that can irritate IC bladders may be irritating for vulvodynia. Avoid processed foods, caffeine, acid and high sugar content, which can all make vulvodynia symptoms worse. Foods that are high in oxalates, however, are even more notorious for triggering vulva discomfort. Also be sure to get enough fiber and water in your diet to avoid constipation. Having extra pressure from your bowels or bladder can aggravate vulvodynia symptoms.

Have a plan for sexual intercourse

Before or during sexual intercourse, apply a water-based lubricant and avoid using contraceptive creams or spermicides, which can be irritating. Immediately after intercourse, urinate and rinse the vulva with cool water. You can also apply a frozen gel pack to your vulva through one layer of a towel for 15 minutes after intercourse to help keep symptoms mild or at bay.

Make good choices for physical activity

The biggest goal is to avoid any activity that puts additional pressure on your pelvic floor and vulvar region. That means exercises like bike riding and horseback riding will most likely increase vulvodynia symptoms. Instead, find low-impact, IC friendly exercises that you can do. You also want to avoid sitting for long periods of time when possible. If you can, add in periods of standing or use a coccyx cushion to sit on. These have a groove down the middle that reduces all pressure to the vulva and rectum. Avoid donut cushions! (8)

Medical Treatments

Along with self-help treatments, there are a variety of medical treatments that can help vulvodynia symptoms. And some of the medical treatments for vulvodynia are also used for IC.

Topical medications

Medications that are applied directly to the vulva can also be helpful for vulvodynia symptoms. Hormonal creams, such as estrogen or testosterone, can help with vulvodynia symptoms. Estrogen cream improves vulvar health, especially if the tissue is thin or dry because of a lack of estrogen. Testosterone cream can help with sexual health, so using a combination cream of both estrogen and testosterone has been recommended by many doctors in recent years.(9)

Topical anesthetic creams, such as lidocaine (i.e. Anecream) can provide pain relief by numbing the area. This is a temporary effect that lasts for 15 to 30 minutes, but it can be helpful if applied previous to sexual intercourse or at bedtime to make falling asleep easier during flares.(9)

Finally, the third topical medication used sometimes for vulvodynia treatment is compounded formulations. Some of the oral medications mentioned above (like amitriptyline and gabapentin) can be made into a cream or ointment and applied directly to the vulvar area.

Physical therapy

If you have vulvodynia along with pelvic floor dysfunction, physical therapy can help with your symptoms. A pelvic floor physical therapist can evaluate pelvic floor muscles as well as other joints and muscles in the pelvis. Pelvic floor physical therapy includes exercise and manual therapies, such as massage. Many IC patients have pelvic floor dysfunction in the sense that the muscles in the pelvis are too tight, so physical therapy should focus most on helping relax those muscles.

Oral medications

Some oral medications can be used for vulvodynia symptoms. These include the following:

  • tricyclic antidepressants (e.g., amitriptyline/Elavil)
  • serotonin-norepinephrine reuptake inhibitors (e.g., duloxetine/Cymbalta)
  • anticonvulsants (e.g., gabapentin/Neurotin)
  • and opioids (e.g., oxycodone/Percocet)

Nerve blocks

Injecting local anesthetic and a steroid into the pudendal nerve in the vaginal area or low back can help alleviate symptoms of vulvodynia. The effect can be short-term or longer term, depending on how you respond. This treatment is also used to treat pelvic floor dysfunction.

Neurostimulation

For patients with more severe cases of vulvodynia who are unable to find relief from more conservative treatments, neurostimulation could help. Implanting an electrical device that stimulates the spinal cord or targeted nerve can help alleviate pain and discomfort for some patients.

Surgery

For patients with PVD (provoked vestibulodynia), there are two surgical options that can help if more conservative treatments aren’t working. These are a last resort with the success rate ranging from 60 to 96%. The surgeries either remove the vestibule, hymen and some of the vagina or removes only the vestibule tissue that is causing pain.(9)

References

  1. National Vulvodynia Association. Understanding Vulvodynia.
  2. Pagano, T. Vulvodynia. WebMd. Sept. 9, 2020.
  3. National Vulvodynia Association. Definition and Types of Vulvodynia.
  4. National Vulvodynia Association. What is Vulvodynia?.
  5. National Vulvodynia Association. What Causes Vulvodynia?.
  6. National Vulvodynia Association. Diagnosis.
  7. Johnson TC. What Can I Do About Vulvodynia?. WebMD. Jan, 12, 2021.
  8. National Vulvodynia Association. Self-Help Strategies.
  9. National Vulvodynia Association. Vulvodynia Treatments.