Q&A: On vulvodynia with Laura Higgins, physical therapist at Decatur Hand and Physical Therapy Specialists

One in six women are affected by vulvodynia at some point in their lives. We spoke with Laura Higgins, physical therapist at the Decatur Hand and Physical Therapy Specialists, to find out more about the syndrome that affects 13 million women and how physical therapy can help.

What is vulvodynia?

Chronic pain in the vulva that can be present in one or more areas.

What are the symptoms?

Pain in the clitoral, vaginal, and/or perineal area; pain can feel like burning, stinging, rawness and/or itching and can be constant or on and off. A woman with vulvodynia may have pain, difficulty and even an inability to use tampons, have a pelvic exam and/or have sexual intercourse.

How common is vulvodynia — in your personal medical experiences and (if you know) on a national level?

Unfortunately, research on vulvodynia really only started in the last 12 years, so the information is limited. Some studies found 5-16% of women currently have or have previously experienced chronic vulvar pain. The group that most commonly has vulvodynia is women ages 18-25. Women can experience vulvodynia at any age, with studies reporting 4% of women ages 45-64 have it.

What causes vulvodynia?

Again, the research is very limited. Some of the most popular theories are frequent vaginal infections (yeast, bacterial vaginosis, etc), early use of the birth control pill, trauma to the pelvis (eg. a fall on the vaginal area) and the wind-up theory. This theory basically means that once something like an infection or dermatologic condition has irritated the vulva, the nerves that go from there up the spinal cord to the brain get wound up and more sensitive. This causes the switches in the brain and spinal cord to not work correctly and the pain becomes more frequent and severe. Then the cycle keeps snowballing.

What are some other conditions vulvodynia is often misdiagnosed as?

Vulvodynia is unfortunately often misdiagnosed for a long time. It is not uncommon for women to see 5 to 7 health care practitioners before they are correctly diagnosed. Very often vulvodynia may be misdiagnosed as an infection, especially yeast, because of the complaint of itching and burning. It is extremely important that women with long-lasting pain actually get cultures before treating themselves for yeast infections.

How does one treat vulvodynia, whether in or outside a medical office?

The good news is there are many options for women with vulvar pain and, as more research is being done, health care providers will be better able to help guide women in their care. Treatment most often has to be multi-disciplinary, meaning several providers may be helping at the same time. Women may be prescribed oral medications and/or topical creams. Dietary changes can help some women, as does acupuncture. Physical Therapy and psychotherapy or counseling can also be beneficial.

My understanding is that some women need to seek physical therapy for their vulvodynia. How does this work to improve or heal the patient? How common is this form of treatment for vulvodynia?

Physical Therapy is a common treatment for vulvodynia. A large percentage of my patients have vulvodynia or other similar pain or sexual dysfunctions. For this condition, treatment usually consists of internal pelvic floor massage, which is done vaginally. It is less intimidating than a pap smear — no stirrups or speculum- and it is done respectfully and professionally. Very often the pelvic floor muscles are tight or in spasm. Using special massage techniques can help release the tightness and decrease the pain. PT also includes exercises for core strengthening and hip, back, and leg flexibility, as well as a lot of patient education on things like posture, stress reduction and relaxation techniques.?Women may initially be leery of PT, but after their first visit, they are often really happy to have their pain validated in a way that a bunch of medical tests or even surgeries may have not been able to.

What are some alternative sexual activities recommended for those diagnosed with vulvodynia who cannot have intercourse or the likes?

If a woman with vulvodynia is in a sexual relationship, it is really important that they find ways to be intimate with their partners, even if they cannot have vaginal penetration due to pain. I always encourage my patients to see a sex therapist or couples counselor while they are coming to PT. These psychotherapists have specialized training in these areas and can help guide the couple as they work towards being able to have intercourse.

How common is it for women who suffer from vulvodynia to have the surgical procedure known as vestibulectomy?

This surgery, at least in this part of the country, seems to be less and less frequent. I have been treating women with this condition for almost 10 years and I have only had 2 patients that had vestibulectomies.

What exactly is a vestibulectomy?

It is a surgery that removes part or all of the vestibule, which is at the vaginal opening. A modified vestibulectomy is a surgery that removes only the painful tissue.

Are there any books on vulvodynia (medical or anecdotal) you would recommend for women (and their partners)?

The National Vulvodynia Association’s website nva.org is a fantastic source of information for women with vulvodynia, as well as for their partners and for medical professionals. Some good books are “Heal Pelvic Pain” by Amy Stein, “A Headache in the Pelvis” by Drs. Wise and Anderson, “Ending Female Pain: A Women’s Manual”, and “The V Book” by Dr. Stewart.

Of the women you treat with vulvodynia, how would you characterize their emotional involvement with the diagnosis? As in, are most surprised, familiar with the condition; is there a sense of shame, indifference, surprise, anger, etc?

There are so many emotions that can go with any type of chronic pain, and vulvodynia may be even more so because of the impact it can have on sexual relationships. Women may have difficulty finding someone they can talk to about their problems — it’s a lot easier to talk to your boss, friend or mom about pain in your back or knee than in your vagina. By the time a woman is referred to me, she often has seen several health care providers, and usually several of them have told the woman to relax more or have a glass of wine and everything will be fine. Or they may have several medical tests that all come back normal. But they don’t feel normal. Some doctors may hint that the problem is all in the patient’s head, and eventually the patient may start to think they are crazy because no one can tell them what is wrong. Frustration is probably the number one emotion I see: frustration that it took so long to get diagnosed, frustration at the lack of research to help guide their decisions and frustrations at how the pain affects absolutely every area of their lives.

What are some things or acts that women who have vulvodynia should avoid?

Each case is different, but most women with vulvodynia cannot ride a normal bike. They may not be able to wear clothes that are fitted in the pelvic area and they have to be careful about what soaps they use for their bodies and clothes.

I read some women do best in seeking psychotherapy in addition to physical therapy once diagnosed. Why is this?

Chronic pain causes issues for the person no matter where the pain is. It can cause depression, which may even worsen the pain. With pain in the vulva, relationships are often strained. Sex therapists and couples counselors can be invaluable in helping the woman deal with the stress of the pain, as well as with their relationship.

What advice do you have for men who are dating a woman who has been diagnosed with vulvodynia?

Be supportive, patient and understanding. The partner of someone with vulvodynia may think there is something wrong with them; that the woman does not want them. That can make it even more stressful for the woman. By educating themselves, the partner can realize this is a medical condition that is not anyone’s fault, and by working together, real improvements can be made. I strongly encourage partners to read the brochure “My Parther has Vulvodynia — What Do I Need to Know?” at nva.org.

Contact?Laura Higgins, PT?Decatur Hand and Physical Therapy Specialists?575 DeKalb Industrial Way, ?Decatur GA 30033?404-296-8511