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The Short Version: Nearly 16% of women will experience a chronic and unexplained pain around the vulva at some point in their lives. The condition is called vulvodynia, and it has no known cause or cure. If you or a loved one suffers from vulvodynia, you can turn to the National Vulvodynia Association for resources to help you manage the disorder and relieve the pain. Since 1994, the nonprofit has provided a support system for women suffering from vulvodynia and raised awareness about the disorder’s causes, symptoms, and treatments. Run by women for women, the organization established a national network of over 3,000 members who share their stories and give advice to other women diagnosed with vulvodynia. The National Vulvodynia Association has spent decades advocating on behalf of female patients and giving hope to families struggling against a sensitive pain condition. For more information, you can visit www.nva.org.
I never want to admit when I’m in pain or sick. I try to handle personal problems on my own time and keep everyone, even those closest to me, from seeing me flinch or falter. But sometimes you have to say something — because that’s the only way to get help and treatment.
Women suffering from vulvodynia, chronic vulvar pain with an unidentifiable cause, often feel reluctant to speak up about it because it’s a deeply personal issue. In the recent past, 75% of women with vulvodynia were too embarrassed to talk about it with friends or loved ones. But today, more women are comfortable telling their friends.
Single women particularly struggle with how to talk about their pain during a date. If you’re actively dating, when’s the best time to tell a love interest you have vulvodynia? Talking about it on the first date is probably too early, but during sex is probably too late — so what do you do about one-night stands? How do you talk about your condition without freaking a guy out?
Having vulvodynia can impact women’s personal lives in fundamental ways, and it’s not always clear how to deal with those issues. Fortunately, the National Vulvodynia Association has created a supportive network of women who have been through those challenges and can offer advice to singles and couples dealing with the disorder.
Phyllis Mate, President and Co-Founder of the NVA, said she and four women in a Washington, DC, support group started the nonprofit to raise awareness about vulvodynia. They spent the summer of 1994 drinking lemonade, making brochures, and writing newsletters to educate medical professionals as well as women suffering from mysterious vulvar pain. These women were in pain and wanted the medical community to take them seriously.
“We just thought ‘We can’t be the only women in the world with this condition,'” Phyllis recalled. In fact, up to 16% of women will experience vulvodynia at some point in their lives. It affects women of all ages and has no known cure.
After years of advocacy work, the NVA got the recognition it sought from the medical community, which established vulvodynia as a legitimate gynecological disorder. Today, the nonprofit funds research into underlying causes of the condition in hopes of finding a way to prevent or treat it.
Thanks to its website, the NVA now provides an educational platform for people around the world. Phyllis told us she receives thank-you letters from women in Croatia, Malta, and other countries. People write in to thank her for giving them resources to help them deal with sensitive and painful issues. In 2010, one couple sent the NVA donation money they had raised at their wedding reception as a token of their gratitude.
“I get so many letters from women saying they’re forever grateful,” she said. “It’s very emotionally rewarding.”
The NVA is one of two organizations focused on helping women with vulvodynia. If you have a question about the condition — anything from how to diagnose it to how to treat it — you can find answers for free on the site, or you can become a member to receive more specific and detailed information on vulvodynia.
Over 3,000 members regularly donate to the NVA to get advice and support other women suffering from vulvodynia. All new members receive an emailed list of health care providers who treat vulvar pain disorders as well as the contact information of a local NVA support leader — typically a woman who has been diagnosed with vulvodynia.
The NVA offers a members-only patient tutorial to walk women through gynecological anatomy, vulvar self-examination, marriage and family issues, self-help strategies, and other special issues associated with vulvodynia. From the workplace to the bedroom, the tutorial provides an in-depth guide for women who feel like they’re suffering alone.
Women who have experienced similar medical challenges come together to share their stories and advice through the NVA. It’s a woman-to-woman network full of educational resources on a painful subject. The website promotes personal stories written by women with vulvodynia to highlight the human face behind the disorder and give women a platform where they can learn from each other.
“My advice to anyone struggling with a similar issue is to never give up,” said Callista in her patient story. “As you travel, you will learn that there are many, many other people who share your pain. And you will meet many people who are willing to help you along the way.”
Some women with vulvodynia feel isolated and uncertain about what to do about such a sensitive disorder. Over the past decades, the NVA has put together many helpful guides written by women and medical professionals familiar with the condition. You can find everything from self-help tips to multi-disciplinary treatments. Below, we’ve highlighted five best practices for couples dealing with vulvodynia.
First of all, you need to have an honest discussion about where the pain is and how severe it is. If certain areas are sensitive or certain sexual acts are painful, it’s important to share that information with sexual partners. Couples may need to adjust their approach to intimacy to avoid pain points, and there isn’t a one-size-fits-all solution.
As the guide says, “Each woman’s experience with vulvodynia is unique, with symptoms ranging from mild to incapacitating.”
The NVA offers comprehensive resources for women suffering from vulvodynia. You can learn more about the diagnosis and treatment of the condition on the website. The online patient tutorial walks patients through everything they can expect. As a bonus, the organization has put together a Partner Guide that members can give to their boyfriends or husbands to explain what the disorder is like and how it affects romantic relationships.
“Being pain-free has completely changed our lives, and I cannot thank the NVA enough for having the resources and information available when I needed them most.” — Martha and Justin R.
“It’s easier today because you can find so much information on our website,” Phyllis said. “You can tell your partner to go to our website or give them our handbook, which was not possible 20 years ago.”
The NVA’s Partner Guide recommends showing support for a woman with vulvodynia by going with her to doctor’s appointment. Don’t be squeamish! You need to learn what she’s going through and find out what you can do to help. Going with her to an examination or consultation is a great way to show empathy and concern for your partner.
“The NVA is such a wonderful resource. They do support, educate, and have an amazing list of providers to try.” — Natalie G., a member of the NVA
“You can advocate for your partner by accompanying her to medical appointments,” the Partner Guide says. “If you offer to accompany her, and she declines, that’s OK. Your offer will mean a lot to her.”
Some women with vulvodynia experience pain after prolonged sexual intercourse, so couples may have to put the brakes on any together time. You should avoid actions and activities that could exacerbate symptoms. That might mean having sex less often, but it shouldn’t mean the intimacy in your relationship disappears.
You can do other things (both in the bedroom and outside it) to show love and affection to your significant other. For example, you can give a gift or plan a date to make that special someone smile.
Couples dealing with vulvodynia can face many obstacles, but a direct and honest conversation can ensure everyone’s needs are being met and no one is suffering in silence. Whether you need to take intercourse slowly, apply lubricant, or abstain from sex altogether, remember to be there for your partner and do your best to make it work.
Before contracting vulvodynia and entering the nonprofit world, Phyllis taught psychology at a junior college. Her parents had impressed on her from an early age the importance to lending a hand to others and showing compassion to those in need. So when she learned that many women were suffering in silence, she knew she had to speak up for them.
When she became the Executive Director of the NVA in its early days, she didn’t take a salary. She volunteered her time and her efforts because she believed in the cause the NVA represented and knew it could make a difference in the lives of women who have vulvodynia.
“I value helping others,” she said. “I feel this is the best use of my life and an important purpose I’ve been able to fulfill.”
To this day, the NVA relies on a lean staff and a vast network of volunteers to spread the word and carry out the mission to educate and empower women with vulvodynia. Phyllis told us the three other women on her team are incredibly passionate and dedicated individuals. Her husband even pitches in as treasurer for the organization.
“When you’re running a nonprofit, it helps if you have committed volunteers,” she said. “We’re fortunate to have so many donors and support leaders behind us — that’s how we maintain ourselves.”
Vulvodynia is a painful condition in a sensitive area of the body, and many people naturally shy away from talking about it. Women suffering from vulvodynia may feel hesitant to bring it up to a sexual partner, but not doing so can damage their relationships and diminish their sexual satisfaction. Those women with the courage to speak out about what they’re feeling raise awareness about a common, yet largely unknown, disorder.
Phyllis said many of the stories she hears from women with vulvodynia bring tears to her eyes. She has dedicated her life to supporting women, partners, and medical practitioners through the diagnosis and treatment of vulvodynia. The National Vulvodynia Association is an information-rich resource for anyone interested in the disorder.
Thanks to the NVA, women diagnosed with vulvodynia don’t have to face their problems alone. The website, tutorials, and newsletters provide helpful insights drawn from the latest medical research as well as real-life experiences. You can join the cause and make a difference in the lives of women by getting involved with the NVA as a member, donor, or advocate.
“Our primary goal is to help women,” Phyllis said. “So many women are suffering and don’t know where to go. It’s an incredible gift to help women learn how to treat vulvodynia and live without pain.”