Educate Others: How You Can Help Raise Awareness of Vulvodynia

A recent Harvard study showed that as many as six million American women suffer from vulvodynia. Almost 60 percent of patients report visiting three or more health care providers to obtain a diagnosis and an astounding 40 percent remain undiagnosed. This study also reported that 40% of women with painful symptoms did not even seek medical care. Some women incorrectly assume that some level of discomfort or pain with intercourse is normal, while others may be hesitant to discuss painful symptoms with their health care providers for many reasons.

It is up to all of us to do our part to educate health care providers about vulvodynia, and to help women both learn about the condition and feel more at ease talking about it.  You may feel that you are only one person and cannot make much of a difference in your community but that is not true!  Here are some ways YOU can help to raise awareness of vulvodynia:

Send a Letter to Health Care Providers Who Misdiagnosed You

One of the most simple, yet effective things YOU can do is send a letter to all of the health care providers who were unable to help your search for a diagnosis. Because of the personal connection, a letter from a former patient is more likely to be read by the health care provider than simply requesting that the NVA mail an unsolicited info packet to their office. Click here to download a sample letter that you can personalize.  Click here to download information to enclose in your letter to your healthcare provider.

Disseminate Educational Information to Local Physicians

You can also educate health care providers in your local area by mailing or hand-delivering educational materials on vulvodynia to their offices. Here’s how to do it:

  1. Create a mailing list of local providers in certain specialties (e.g., gynecology, pain medicine, family medicine, women’s health).  You can use your local phone book to gather this information or visit http://yp.yahoo.com/ (Yahoo Yellow Pages) to look up contact information by medical specialty from select cities or zip codes.
  2. Write a cover letter (click here to download a sample) and decide on materials you would like to include in the mailing.  (Please contact NVA’s administrator, Gigi Brecheen at gigi@nva.org to obtain educational materials you can include in the mailing.)
  3. Decide whether you will mail or hand-deliver the materials (hand-delivering is more time consuming but more effective). If you hand-deliver the materials, be sure to explain who you are to the receptionist or nurse, to ensure that the materials are not discarded.
  4. An optional step is to follow-up by phone with the providers (or their nurses) to confirm that the materials were received. Also, ask if he/she has any questions.

Contact Your Local Media

Local reporters and television anchors are most interested in covering a newsworthy story surrounding a specific event, e.g., release of research study, local event (such as mentioned above). However, some may be willing to write an overview piece on the condition, profiling a local woman who suffers from vulvodynia. In order to generate this kind of publicity, follow these steps:

  1. Create a contact list of local newspaper reporters/editors and television anchors you think would be most interested in this subject (e.g., persons with an emphasis in medicine/science, lifestyle or women’s columnists). You can gather their contact information from your local paper or online at the newspaper or television station’s website.
  2. Contact the reporter by phone to ascertain his/her interest in covering the condition.  Before you begin speaking about the reason for your call, always ask a reporter if he/she is on deadline and if the present time is a good time to speak. If he/she is on deadline, ask if there is a better time to phone back. When you have the opportunity to speak to the reporter, you will have just a few minutes to make an impression.  You will want to use talking points that stress the importance of the condition.  If the reporter sounds interested, you can reference the NVA website, www.nva.org – where we have a media corner with a fact sheet and other materials for media professionals. Also, tell him/her that you will have a representative from the NVA call back to answer any questions remaining about the condition. It is also helpful to tell the reporter that you have a local doctor and patient who are willing to be interviewed for a possible story. (Always get permission before releasing a patient or doctor’s contact information.)

Organize a Public Education Forum

In an effort to raise awareness of the condition and reach women who may be suffering in silence, groups throughout the country have organized educational forums that are open to the public. In order to help you start thinking about what you might like to do in your area, the next paragraph describes what the Wisconsin support group organized with great success.

The group contacted state representative, Sheldon Wasserman, MD, who is also a practicing gynecologist, and asked him to give a key-note address at a 2-hour forum open to the public.  They chose a location that was well-known and easily accessible (local hospital auditorium) and advertised the event through flyers at the offices of local health care providers. (You can also announce an event in local newspapers and through women’s organizations, etc.).  Prior to the forum, they drafted a press-release on the event and sent it to select reporters and news anchors at local television stations (along with performing follow-up phone calls). This resulted in vulvodynia coverage in local papers and health sections of the evening news.

If you are interested in setting up an event of this kind, please contact Phyllis Mate.

Write to or Meet with Your Elected Officials

Another important way to raise awareness in your community is to educate your local legislators and let them know that this is an issue that is important to his/her voters. You can find contact information for your federal and state legislators by entering your zip code here.  Once you have put your list together, decide if you would like to send those legislators a letter from you and other women in your district, or if you would like to set up a formal meeting with his/her staffer.

Please see this Sample Letter to Legislator for modification and use.

During a meeting, you may have the opportunity to discuss a little bit about your personal situation (and/or those of other women who attend). Urge the legislator to support increased research funding for vulvodynia at NIH, as well as educational efforts aimed at increasing the knowledge of health care providers.  You may want to consider asking a local health care provider to join you at this meeting as well.

NVA also organizes and executes an annual Advocacy and Awareness Campaign each spring where women across the country meet with and send letters to their elected officials.  If you are interested in participating in this campaign, please contact Phyllis Mate at 301-299-0775 or pmate@nva.org.

If you have any trouble opening/viewing these documents, please contact NVA’s administrator, Gigi Brecheen at gigi@nva.org or 301-949-5114.