National Vulvodynia Association - share your story

Please see copy of email and submission details below:

Research shows that 50% of women with vulvodynia do not seek medical care, and of those who do, as few as 2% are diagnosed! Women also still report feelings of isolation, invalidation and stigma, and as few as 25% report feeling comfortable discussing vulvodynia with close friends. To help women and girls with vulvodynia feel less isolated, advocate for themselves and seek appropriate medical care, the NVA would like to hear from those who are willing to share their experiences in our online/printed materials. We want vulvodynia sufferers who read our materials to "see" and understand that they are not alone and that there is hope for them. By sharing just some of your story, you are in a unique position to provide invaluable support and encouragement to other women and girls.



Presently, we'd like to hear from those who have experiences to share in the general categories listed below. Please send your response to any of the questions listed below (of 500 words or less per question) to cshea@nva.org. In your email, please:

(1) Specify how you would like your name to be listed should we have an opportunity to use it in some of our materials; for example, anonymous, first and last name initials only, first name only, full first name and last name initial, etc.

(2) Attach a recent photo of yourself (if you are comfortable with us publishing this along with your story);

(3) State that you give the NVA permission to publish your response(s).



If we are able to include your submission in any of our materials, we will notify you and send you a final draft to review and approve prior to publication.


Thank you for sharing your experience with other women with vulvodynia. Together we can overcome the feelings of isolation that accompany this disorder!


Question Categories:



(1) Managing Symptoms
◦How has educating yourself about vulvodynia helped you to better understand the disorder, obtain effective medical care and treatment and/or advocate for yourself?
◦Has educating yourself (and others close to you) helped you to overcome any initial embarrassment, isolation or stigma that you felt when first diagnosed? If so, how?
◦Besides medical treatment, what techniques do you use in your everyday routine to help control vulvar pain symptoms and the disorder's impact on your overall quality of life and well-being?

(2) Emotional and Interpersonal
◦How do you cope with the negative emotions brought about by vulvodynia?
◦How have you addressed and dealt with any sadness, stress, anger, anxiety and/or other emotions directly related to your vulvodynia?
◦Outside of your intimate relationship, how has vulvodynia affected your relationship with your significant other or spouse, and what have you found to be particularly helpful in coping with this to maintain a healthy and happy relationship?
◦How do you work to maintain an intimate relationship with your significant other or spouse in spite of vulvodynia?
◦ How has vulvodynia affected your relationships with close friends or family members? What have you found to be particularly helpful in coping with this and maintaining these relationships?

(3) Activities of Daily Living
◦How do you manage daily household responsibilities when vulvar pain interferes with your ability to carry these out?
◦How do you handle family responsibilities (spouse, children, etc.) during these times?
◦What techniques do you use to address the challenges vulvodynia brings to your workday (e.g., pain from extended sitting, lack of breaks, etc.)?

(4) Advice to Others
◦What advice would you give to a woman or girl who just began to experience vulvar pain symptoms or was recently diagnosed?
◦What advice would you give long-time vulvodynia sufferers?
◦Have you ever received any advice that you found particularly helpful from someone else?


Contact Us


National Vulvodynia Association


PO Box 4491, Silver Spring, MD 20914-4491

301-949-5114 (phone) | 301-299-3999 (fax) | www.nva.org