We all know about yeast infections and UTIs, but the word vulvodynia isn’t in most collegiettes’ vocabularies. Vulvodynia is a chronic pain syndrome, much like fibromyalgia or arthritis, that affects (you guessed it!) the vulva. It’s not an infection, it’s not sexually transmitted and it’s not contagious, but millions of women suffer from this hard-to-explain condition that can make sex and everyday living painful.
The word itself just means pain of the vulva (which is the proper name for female genitalia) but the chronic pain syndrome can mean different things for different women. Beyond a painful hook-up, some women find using tampons impossible; others find that sitting down or wearing tight pants can provoke pain. And unfortunately, because the disorder presents itself differently for different women, it can be difficult to diagnose and treat. But don’t worry, Her Campus has you covered on what you need to know about this tricky pain syndrome. Here’s what to look for, how to get help, and how to get pain-free.
What is it?
According to Suzy Pare, a women’s health practitioner at the Cleveland Clinic, vulvodynia is pain of the vulva with no identifiable cause. Unlike yeast infections and STDs, there’s no test for vulvodynia, and it’s a diagnosis of exclusion, which means that doctors have to rule out many other vulvar conditions before you can get properly diagnosed with vulvodynia. The main symptoms include feelings of burning, rawness, soreness, throbbing, itching and painful sex. But here’s the complicated part: there are often no visible signs, unlike some infections. Unlike pain that can occur after rough sex and feel like these symptoms, vulvodynia is persistent and doesn’t go away.
What are the causes?
Vulvodynia is caused by many different factors—sometimes, it’s nerve-related, other times it’s muscle-related, and there are more factors in between. You can experience symptoms at any time in your life, and it can be related to some sort of trauma to the vulvar area, like an accident or sexual abuse. But more often than not, the syndrome can affect you with no contributing factors—and it’s not uncommon. According to the National Vulvodynia Association, one in four women will experience symptoms in her lifetime, lasting from months to years.
Not a lot of research has been devoted to vulvodynia, says Christin Veasley, the director of the National Vulvodynia Association. But that doesn’t mean there aren’t ways to alleviate your pain. Different treatments work for different cases, but most often you’ll be prescribed with numbing creams, topical or oral antidepressants, physical therapy, biofeedback or in rare cases, surgery.
How is it treated?
Vulvodynia may sound foreign and scary, but there are many treatment options, depending on the origin of the pain. Nerve-related pain may respond best to tricylic antidepressants, while physical therapy may work best for pain that is related to muscle spasms. Other treatments include nerve blocks or lidocaine (both of which are anesthetics), or, in rare cases, surgery may be recommended. Often a combination of different treatments works best. Your gynecologist can help you find a strategy to keep you as pain-free as possible.
One of the best things you can do, regardless of your diagnosis, is to avoid irritating or aggravating the area by practicing healthy habits such as wearing 100% cotton underwear, not douching, and not using fabric softener on underwear. These things won’t cure you of pain if you have vulvodynia, but they can really help.
How does it affect your life?
Cristina, a recent Stanford graduate, was diagnosed with vulvodynia when she was a sophomore in college. After trying many different treatment options, she finally found that physical therapy helped ease her pain.
“During college, it meant that I had to learn to balance doctors appointments and physical therapy with homework and my social life,” Cristina says. “It also changed the way I dressed and initially made it difficult to exercise, and walk and bike around campus.”
And, unsurprisingly, vulvodynia can take a serious toll on your sex life. For some women, treatments may make sex possible, but often, just the thought of intercourse is painful. This is something Cristina and her long-term boyfriend had to deal with.
“I am lucky enough to be with someone who is patient and compassionate. When my pain was at its worst, we had to put our intimate life on a hold for extended periods of time,” Cristina says. “After having gone through such a difficult period, I know how strong our relationship really is, and how strong I have become.”
Think you may have it?
Here are some tips from Veasley if you think you have this complex (but treatable!) syndrome:
- Educate yourself by talking to doctors and doing your own internet research, because this isn’t a condition a lot of doctors (even gynecologists!) are really familiar with. “You can’t advocate for yourself until you educate yourself about self-help and treatment,” Veasley says.
- Don’t be afraid to tell other people, even if it feels awkward. “Sharing your experience with someone is important,” she says. “A trusted friend or partner, so you’re not suffering through this alone. This is a very prevalent condition that millions of women go through.”
- Be patient and hopeful. “While we do have a lot of treatments available, we don’t understand which treatments work for each person,” she says. “It’s a laundry list of treatments. We don’t understand yet which one you should try first. We do have treatments but it may take some time to find one or a combination that will be helpful for you.”
- Finally, when you find relief—share your story! “Once women get better, they don’t want to stick around and talk about it anymore. They don’t want to think about it or deal with it. Share their stories and provide hope for them. This is not a life sentence,” Veasley says.
If you have unexplained, persistent vulvar pain that isn’t an infection, you may have vulvodynia. Talk to your gynecologist so you can get help with easing the pain, and remember—you are not alone. One in four women will have vulvodynia in their lifetime, and while not many people talk about it, many collegiate women have it too.