Vulvodynia: The Pain Down Below
Imagine experiencing burning, stinging, and stabbing sensations in your vulva constantly or when there’s pressure or contact. Either way, this condition – known as vulvodynia – can affect every aspect of your life.
Michelle Living knows this all too well. She realized something was really wrong in 2003 when she had sudden spasms in her pelvic floor that made her stop in her tracks and grab ahold of something. Shortly after this, she experienced a scary moment when she discovered that she could barely insert a tampon. In 2004, she finally received the diagnosis of vulvodynia, which she had never heard of before.
Living calls the diagnosis a bit of a rude awakening. She was devastated, as she was getting married in four months and had been dismissed by the dermatologist who diagnosed her. The dermatologist basically ignored her crying and just gave her a short print out and sent her home without any other information. She came close to cancelling her wedding, and felt hopeless.
More on vulvodynia
According to the National Vulvodynia Association (NVA), vulvodynia occurs in women of all ages and doesn’t discriminate. Additionally, the NVA cites research studies which found that as many as 16 percent of women in the U.S. suffer from this condition at some point in their lives. Most women start noticing symptoms between the ages of 18 and 25.
Unfortunately, receiving a diagnosis isn’t always easy. Dr. Pamela Morrison, a physical therapist who has treated vulvar pain/pelvic floor muscle dysfunction for the last 17 years, says that up to 10 years ago, a patient was seen by an average of 10 or more doctors prior to getting a proper diagnosis and effective treatment. With increased awareness, patients now only have to see one to three healthcare providers before being properly diagnosed, though this depends on location and proximity to knowledgeable providers.
Most women are initially told they have recurrent yeast infections, when in fact these infections don’t exist and their treatment can worsen the pain.
The exact cause of vulvodynia is unknown, mostly because there hasn’t been enough research. What is known, however, is that it is not an infection or a sexually transmitted disease, the NVA says.
Some women first notice the pain when they try to insert a tampon, have their first gynecologic exam, or when they first attempt to have sex, says Dr. Paul Nyirjesy, professor of Obstetrics and Gynecology at Drexel University College of Medicine and Director of the Drexel Vaginitis Center, but they tend to be the minority. “More commonly, they’ve been doing fine, then something acute (which often sounds like a yeast infection) happens, and they are left with the chronic pain,” he says. “I think of it as a triggering event, which can include yeast infections, skin conditions like lichen sclerosus, or vaginal atrophy (the changes that occur with menopause); there are probably a bunch of various things that can start it.”
Indeed, the NVA says one or more of the following may cause the condition:
- An injury to, or irritation of, the nerves that control sensation in the vulva
- An abnormal response of vulvar cells to infection or trauma
- Genetic abnormalities that make cells overreact to inflammation
- A localized hypersensitivity to Candida (yeast)
- Weakness or spasm in the pelvic floor muscles
The bad news is there isn’t a well-studied, evidence-based approach to treatment, says Dr. Nyirjesy, so each expert has his or her approach that’s been developed over the years. And of course, every woman is different.
The good news is that Dr. Nyirjesy considers vulvodynia a very treatable problem. “More than 90 percent of the women we see end up feeling much better,” he says. Because the treatment approaches used haven’t undergone the rigors of a placebo-controlled study, it’s hard to know whether it’s the treatments that worked or if the problems resolved on their own. “Since most of our patients have had problems for years before getting to us,” Dr. Nyirjesy says, “I personally believe it’s the treatments that get them better.”
Dr. Nyirjesy tends to start conservatively and works his way up, with an initial approach of using a compounded cream that has Gabapentin/Amitriptyline/Baclofen in it. Patients use this for about six months, with about 70 percent improving. If this doesn’t work, the next step is trying oral Amitriptyline or Gabapentin. If the patient has elevated pelvic floor muscle tone, Dr. Nyirjesy is a big advocate of physical therapy. When nothing else works for localized vestibulodynia – when the pain is in the tissue surrounding the vaginal opening – he does a vestibulectomy with vaginal flap advancement. The success rate of this surgery ranges from 60-90 percent, the NVA says.
On the horizon, the MonaLisa Touch laser may be helpful; Dr. Nyirjesy has been using it for about a year with more refractory patients with some success.
A multi-disciplinary approach seems to be favored. This is what Living has found to be true for her. Her treatment has been a journey of patience. The first thing she tried after diagnosis was seeing a chiropractor to work out the tension in her groin and thighs, but this didn’t help. Two and a half years after diagnosis, Living found a pelvic floor physiotherapist who treated her entire body and did internal pelvic floor work. It was slow progress, but she improved.
Around this time, she started taking amitriptyline orally, which took the edge off the pain. Along the way she discovered that different foods were irritants. Later on, she added Yamuna Ball rolling exercises. She also started low-level laser or light therapy (LLLT), which changed her life. She eventually rented a unit to use at home. She’s also used the compounded cream, tries to take care of her overall body health, and lives as low stress a life as possible.
“I don’t think that any of these treatments on their own would have gotten me to this point,” says Living, “[as] it was the combination of treatments that worked best for me.”
Effect on life
Because vulvodynia is invisible, women who have it might look fine on the surface, when in reality they’re in incredible pain.
Living is now at the point where vulvodynia is a factor in her life and she still makes decisions with it in mind, but it no longer controls her entire life. She describes it as being very isolating, especially since it’s such a sensitive and personal topic. Even wearing clothes was hard because they caused pain, and menstruating was awful. “Vulvodynia made it hard to have a job, have a social life, and even hard to be a good mom sometimes,” says Living. “Having [it] is very hard on a marriage.”
Because it’s treatable, there are different approaches to try, and it’s not worth suffering in pain, don’t hesitate to get another opinion if you’re not being helped. There isn’t always a quick, easy answer, Dr. Nyirjesy says. Six months of working with someone is a good length of time to decide whether you’re on the right track.
Remember, there’s a light at the end of the tunnel. “There was a time when I didn’t feel life was worth living because there was so much pain,” Living says. “And now I love life and I can even say that I am thankful for the experience as it made me the person I am today (although if given the choice I would never have chosen to walk that road). I am not completely pain-free all the time from vulvodynia, but I have very little pain most of the time and often enough, none.”