From Obscurity to Oprah

[Heather34]

Hi ladies. This is a great article about the condition of vulvodynia. It provides excellent advocacy tips that would be very useful in advocating and educating concerning the condition of vaginismus.

From Obscurity to Oprah How a Patient Advocacy Movement Put a Little-Known Health Condition on the Map
Women’s Health Activist Newsletter
May/June 2003
by Leah Thayer
Less than a decade ago, most women with vulvodynia—chronic vulvar discomfort or pain without the presence of infection or skin disease—could hardly find a doctor who knew how to diagnose the condition, much less treat it. There was no research funding, no discussion in medical schools, no interest from pharmaceutical companies and, other than a smattering of loosely knit local support networks, no organization that advocated on behalf of patients. Today, vulvodynia isn’t exactly a household word—at least not yet. But it is the subject of a five-year prevalence study at Harvard Medical School, with preliminary findings suggesting that almost 20 percent of American women have suffered from chronic vulvovaginal pain at some point in their lives. The National Institutes of Health (NIH) spends close to $2 million a year on vulvodynia research and sponsors workshops and conferences on the condition. Major research institutions are studying vulvodynia. There are books on vulvodynia, and articles in popular magazines. Drug companies are showing interest.
And women with vulvodynia have the National Vulvodynia Association (NVA) on their side. With a content-rich website, two newsletters, conferences, research funding and an extensive public- awareness campaign, the NVA is a tiny but influential patient-advocacy movement that has made great strides toward its mission of improving the lives of individuals affected by vulvodynia. NVA’s story may be instructive for women with other conditions that are largely unknown or ignored, or for other fledgling women’s health organizations. Phyllis Mate, one of NVA’s founders, hesitates to call her organization a “model.” After all, it operates on a shoestring budget, with just one-and-a-half full-time salaried employees, not counting herself (she is its volunteer board president, newsletter editor and acting executive director—a juggling act she is careful not to endorse). But she acknowledges that NVA did many things right. With hard work and low pay as caveats, here are some of them.
Getting Organized: Join Forces
A precursor to the NVA was a small vulvodynia support group Mate had joined on the recommendation of her neurologist. By 1994 Mate and four other group members decided to form the National Vulvodynia Association. “It was summertime,” she recalls, and the group would meet for lunch and share their frustration with how little doctors knew about vulvodynia and the complete absence of research funding it received. The five incorporated the NVA and worked with the IRS to obtain tax-exempt status as a 501(c)(3).
Staffing: Enlist Volunteers
From the very beginning, NVA has relied largely on the work of patient volunteers. An early step was the formation of regional support networks, each run by a knowledgeable volunteer who either coordinates group meetings or “takes and makes phone calls” on behalf of other patients needing referrals or information. There are around 100 of these regional networks today, Mate says. Volunteers perform numerous other jobs for NVA as well, including serving on NVA’s medical advisory board, identifying practitioners with an interest in vulvodynia, speaking at conferences, writing articles and corresponding with members (NVA has about 2,500 patient members and about 800 medical professional members).
NVA’s paid staff is tiny but efficient. Its half-time employee is Christin Veasley, a “mostly cured” patient whom Mate describes as “phenomenal.” She runs NVA’s professional programs, monitors research, applies for grants and speaks at conferences, among other duties. The only paid full-time employee is an administrative assistant (not a patient) who handles mailings and other administrative matters. Both work out of their homes, as do Mate and Harriet O’Connor, another NVA founder who also works long hours as a volunteer. (At this writing, NVA is looking for a paid executivedirector.)
Outreach: Use the Internet
NVA took a calculated risk early on and decided to use the Internet as a principle means of disseminating information about vulvodynia to patients, medical professionals and others. “Some board members were skeptical that women with such a personal condition would contact us via the Internet,” wrote Mate in NVA’s newsletter last year, but the gamble paid off. Its website, http://www.nva.org, provides a wealth of information and links for patients and medical providers alike, greatly reducing the time and money NVA might otherwise spend on mailings, taking phone calls and other expenses.
Funding: Find a Friendly Legislator—or Two
Just a year after its launch, NVA made inroads on Capitol Hill when a few members arranged to brief congressional staff members on vulvodynia and the need for research. “Find a friendly legislator, and get in touch with the right staff person,” Mate advises, “someone who takes an interest in your issue” (most congressional offices have a designated staff person for health issues). One of these legislators was Tom Harkin, a Democrat from Iowa and a “major player” on the Senate subcommittee that deals with health issues. Harkin’s support would turn out to be a critical linchpin in securing research funding from the National Institutes of Health, as addressed below.
Voters are fickle, so Mate advises meeting with as many legislators (or their key staffers, as the case may be) as possible. Female legislators may be particularly inclined to take an interest in women’s health issues, she adds.
Visibility: Make Connections
Many of NVA’s most successful efforts have resulted from making personal connections. In 1996, for instance, the association played a crucial role in convincing NIH to hold its first vulvodynia symposium. A key to that event was Maria Turner, M.D., a dermatologist at the National Cancer Institute, who had previously collaborated with a member of NVA’s medical advisory board in treating vulvodynia patients. “Maria was instrumental in getting the first conference launched at NIH,” Mate says. Turner then helped NVA gain the support of Dr. Florence Haseltine (a well-known physician and author and director of NIH’s Center for Population Research) and Dr. Vivian Finn (director of the NIH’s Office of Research on Women’s Health). “The conference resulted from the commitment of those three women,” Mate says.
That conference, in turn, sufficiently impressed Harkin so that he was willing to hear NVA’s pitch for vulvodynia research funding. This pitch led him to include language in the NIH Appropriations Report.
Personal connections furthered NVA’s goals in other areas too; a “friend” at a foundation helped them get a small grant, for instance. But what if you don’t have those relationships to begin with? Develop them. “Get on the phone and try to make a personal connection with someone,” says Mate. The NVA did this with Drs. Laura and Jennifer Berman— the telegenic urologist-and-psychologist duo. After NVA “made contact” with the Bermans, the sisters discussed vulvodynia before one of the biggest audiences imaginable: Oprah. The NVA website received 10,000 hits in the following week. “You make contact with the right people, and sometimes they can help you along, publicity-wise.”
Media: Be Choosy but “Juicy”
NVA has no public-relations firm and limits press releases to issues it considers “juicy”—a strategy that is both frugal and smart. In 2001, following an episode of Sex in the City that dealt jokingly with vulvodynia, NVA fired off a press release praising HBO for tackling the subject but criticizing its insensitive portrayal. “We used the Internet to find the 100 newspapers with the highest circulation, and targeted the health editors,” Mate recalls. As a result, eight major newspapers published articles about the reality of living with vulvodynia and NVA received hundreds of phone calls and thousands of hits on its website.
Education (1): Get to the Root of the Problem
Educating medical professionals about vulvodynia is a top priority. NVA’s most ambitious means to this end is the Vulvodynia Teaching CD, a CD-ROM covering the diagnosis and treatment of chronic vulvar pain disorders. NVA then got a small grant from a medical device company to send copies of the CD to 720 obstetrics/gynecology department heads and resident directors at U.S. and Canadian medical schools. It’s now seeking a grant that will expand this audience to 100,000 practitioners. The CD “gets to the root of the problem, which is that many doctors can’t diagnose vulvodynia,” says Mate.
Other efforts targeting medical professionals include speaking engagements and renting booths at conferences on pain and obstetrics/gynecology. “One of the best things” NVA did was to assemble seminars or symposia for these conferences, an effort that begins with a proposal laying out the issues and speakers. These appearances can yield unexpected dividends. At one conference, Chris Veasley so impressed representatives of Johnson & Johnson that the pharmaceutical giant gave NVA a small, unrestricted educational grant that now helps to support projects directed at the medical community. Johnson & Johnson doesn’t market any products for vulvodynia at this time.
Education (II): Find a Sympathetic Publisher
No book on vulvodynia existed as recently as two years ago. In 2001 Mate received a copy of a book on interstitial cystitis (a painful bladder condition that primarily affects women) from New Harbinger Press, which specializes in books on individual health conditions. A few months earlier, Dr. Howard Glazer, a member of NVA’s medical advisory board, had expressed interest in writing a book on vulvodynia for the public. Mate called New Harbinger to assess its interest, and in July of 2002, the Vulvodynia Survival Guide was published. (The book includes a chapter on building a patient advocacy movement.)
Expenses: Ask for Discounts
As the head of a “struggling nonprofit,” Mate has no compunction about asking vendors for discounts. “Wherever we go for business services, we explain that we’re a small, largely patient-run women’s health nonprofit, and most companies will give us a price break. If they want your business, they’ll probably say yes. We’re steady, reliable; we pay our bills on time.” NVA also applies this tactic to conference booth fees, which can be expensive. Some sponsors “won’t budge, but most give us a substantial break on the exhibiting fee.”
In other financial matters, NVA is both resourceful and conservative. One small revenue source is.Amazon.com, which donates 15 percent of sales of books such as The Vulvodynia Survival Guide. Mate sends just two fundraising letters a year, one specifically for research. “People love to give to research,” she says. “It’s harder to get money for overhead.”

[Dr. Pacik]

This is a great article which shows the power we have when we pull together. Vulvodynia has become so well known as a result of these pioneering women, that now, almost anyone complaining of sexual pain is automatically diagnosed as vulvodynia. Doctors who are involved often do not know about vaginismus, and the default diagnosis of painful sex is too often “vulvodynia” (for which very little can be done). Though vulvodynia may be associated with vaginismus, vaginismus is usually its own condition separate from vulvodynia and needs a different treatment program. Of 150 patients I treated for vaginismus between 2005 and Jan. 2012, about half give a positive history of pain in the vulva or vestibule. Most of these women have a positive “Q-tip” test which would seemingly confirm this diagnosis. Many of these women are unable to differentiate anxiety from true pain because of their discomfort of being touched in this area. Yet these same women when followed through their ability to achieve intercourse no longer complain of pain in the vulva. Only one patient, to my knowledge, had true associated vulvodynia. She is the one who volunteered her information in the November 2011 issue of Cosmopolitan (http://www.vaginismusmd.com/resources/publications/), “I Botoxed My Vagina”. The lesson here is that vaginismus is its own entity that needs to be treated. Further, it is vital to the future of women suffering from vaginismus that we create our own grass roots organization to promote the concept that vaginismus is a form of sexual pain that can be treated. The time has come to form a National Vaginismus Society (NVS). When I received FDA approval for my research in vaginismus, this was major, in that the government recognized the importance of this study. But we need to go further in advocating for the dissemination of knowledge about vaginismus.

[Heather34]

Hi ladies. Dr. P wrote “it is vital to the future of women suffering from vaginismus that we create our own grass roots organization to promote the concept that vaginismus is a form of sexual pain that can be treated. The time has come to form a National Vaginismus Society (NVS). When I received FDA approval for my research in vaginismus, this was major, in that the government recognized the importance of this study. But we need to go further in advocating for the dissemination of knowledge about vaginismus.”

This is such an important post and I couldn’t agree with you more. Since I’ve been cured from vaginismus (7/4/11), I’ve taken an active interest in advocating and ‘spreading the word’ about the condition in general and this treatment in particular – “the cure”. It is my sincere hope that by speaking up about the condition and that there truly is a treatment that works, this will reach women who continue to suffer from vaginismus in all parts of the world. Also, with active advocacy and discussion of the condition, we are all doing something very, very important to educate physicians, clinicians, and the general public about this condition. How many women reading this right now would’ve loved for their physician to understand the condition when they visited? Also, how many women, who may not have even known the name of their condition, would’ve loved to have opened a page in a popular magazine (Cosmo), and learned that it does have a name and there is a treatment out there that works? It took just one of Dr. Pacik’s patients to want to ‘spread the word’ and tell her story to Cosmo and this article reached hundreds of women out there with the condition of vaginismus. In fact, one of our forum members read this article in November and is CURED today after receiving Dr. Pacik’s treatment. It does work ladies and this is the amazing evidence in its truest form! I would strongly encourage you to continue to work to advocate and ‘spread the word’ about the condition and will be posting specific information on media avenues and sources in the coming days.

I would LOVE to hear your thoughts and ideas on contacting newspapers, journals, magazines, radio shows, and reputable television/news shows? Also, what have you already seen in the media about the condition? I look very forward to reading your comments here.

[Dr. Pacik]

Let’s go even one step further and call our new organization the “International Vaginismus Society” (IVS) since this is a global problem and women around the world struggle with vaginismus. Heather, I look forward to your thoughts how we should contact reputable media to help disseminate information about vaginismus.

[Heather34]

Hi ladies. As I mentioned in my earlier post, I have been actively involved in trying to advocate and ‘spread the word’ about vaginismus in general and Dr. Pacik’s treatment program in particular since I was cured this past July. To do this, I’ve contacted reputable media sources, including: television shows, radio shows, and magazines. I have specifically shared my personal story with them in a very brief synopsis:

A Year to Remember

In July of 2011, I had pain-free sex with my husband for the first time in our 11-year relationship/5-year marriage. After years of being misdiagnosed, unsuccessfully treated, and told there was nothing wrong with me, I finally found a cure. Botox gave me my life back. I was one of hundreds of thousands of women suffering from VAGINISMUS, painful spasms of the vagina due to involuntary muscular contractions which are severe enough to prevent intercourse. My pain was so severe that I could not have a successful gynecological exam, failed at every attempt at intercourse, and could not even insert a q-tip without excruciating pain. I went from doctor to doctor who told me to simply relax, it was all in my head, and there was nothing wrong with me. I became more frustrated and depressed than I had ever been in my life. My husband and I prayed and prayed for a “cure” for my condition as we both wanted to share this experience so badly and we also dreamed of starting a family together. This past year, in 2011, our prayers were finally answered. Within 7 days of treating my vaginismus with Botox, we were able to have pain-free sex for the first time in our 11-year relationship/5-year marriage. Words cannot begin to describe just how happy we both were and I still can’t stop smiling. In fact, my face actually hurts from smiling so much in 2011! Now, we are planning on trying to start our family in 2012, a dream that was so far out of reach just one year ago. 1-7% of woman worldwide suffer from the poorly known condition of vaginismus and no one talks about it. I never said a word about it to anyone other than my husband and simply suffered with it for years in silence. I now am overjoyed to report that I am 100% cured and I want to so badly help other women out there who may be suffering in silence with vaginismus as I did for so long. I am asking you to please, please consider doing an article on this condition as it would help so many women in need. Thank you.

A small list of the radio shows and magazines that I’ve contacted are listed below as well as their contact e-mails. I will be sharing more in the coming days. I would strongly encourage you to become involved in advocacy, e-mail them your story, ask them to do a show or write an article on vaginismus, and help other women out there who may be silently suffering to find the cure.

Radio:
Simone Bienne – info@simonebienne.com, justin.paige@jpa-world.com, kyell.thomas@octagon.com

Magazines:
Courageous Woman Magazine – Telishia R. Berry, Editor-in-Chief, telishiar@yahoo.com

Heart and Soul – editor@heartandsoul.com

Inspired Women Magazine – publisher@inspiredwomenmagazine.com

Prevention – editor@prevention.com

Redbook – redbook@hearst.com

Sassee – editor@sasee.com

Skirt – digitalmedia@skirt.com

Women’s Health Magazine – WHOnline@womenshealthmag.com

You and Me Magazine – submissions@youandmemagazine.com

[Heather34]

Vulvodynia, again, has received national recognition as the result of advocacy from patients who suffered from this painful condition. Vaginismus, too, can receive the same recognition and media attention. Vulvodynia can be the inspiration for contacting similar media outlets to discuss the condition of Vaginismus and, again, this treatment program in particular – the “cure”.
Vulvodynia has been covered in the following media outlets:
Television:
Dr. Oz Show January 2010
ABC 7 November 2009
The Doctors August 2009
20/20 August 2009
Private Practice October 2007
Seeking Solutions with Suzanne January 2007
The Art of Women’s Health April 2005
Sex and the City June 2001
The Oprah Winfrey Show February 2001
Magazines:

9 Things You Should Ask Your Gynecologist
Sarah Jio
Woman’s Day: January 2010
12 Ways to Make Your Love Life Sizzle Again
Amy Beal
Parenting.com: April 2009
A Longtime vulvodynia patient finally gets help from a pain specialist
Louise Sloan
Health.com: September 2008
Coping with 5 Common Sex Problems
Lindsay Lyon, Adam Voiland, Sarah Baldauf
US News & World Report: September 2008
Pelvic Problems that Affect Your Sex Life
Heather Morgan Shott
WebMD: May/June 2008
Help for Intimate Pain
Denise Foley
Prevention: November 2007
Your (Very Personal) Health at 20, 30, 40 and 50
Andrea Cooper
Redbook: October 2007
I Can’t Tell My Doctor That!
Arricca Elin SanSone
Woman’s Day: February 2005
When Sex Hurts
Rachel Grumman
Ladies’ Home Journal: August 2004
Betrayed by Her Body
Lisa Collier Cool
Good Housekeeping: September 2004
Sex Hurts
Jan Sheehan & Holly Taylor
Marie Claire: February 2002
The secret pain women share
Michele Chabin
Redbook: November 2001
Not Tonight, Dear
Carol Saline
Philadelphia Magazine: October 2000
The Sex Problem No One Talks About
Sarah McCraw Crow
Parents: October 1999
Sexual Healing: For many women – maybe millions – intimacy is agony.
Finally doctors can help.
Kate Lee
Health Magazine: May 1998
When Sex Hurts
Paula Dranov
Good Housekeeping: March 1997
Articles on vulvodynia have also appeared in Elle, Cosmopolitan, First for Women, National Enquirer, Prevention, Self and a variety of other magazines.

[Heather34]

Hi ladies. As I promised, further media sources and duplicate sources that I’ve contacted multiple times are listed below. I believe that it is very, very important for each of us to really do every single thing that we can do in order to spread the word about the condition of vaginismus and Dr. Pacik’s treatment program – the true “cure”. I would, again, encourage all of you to submit your story to these various sources. Like the Cosmo article that touched so many women in need, it just takes one of us to want to make a difference. Imagine what we all can do together!!!!
Television Shows:
The Doctors: Website: http://www.thedoctorstv.com/main/tell_us_section_head (Link to submit your story). Doctors of interest: Dr. Drew Ordon (Plastic Surgeon) and Dr. Lisa Masterson (Ob/Gyn)
CNN – Viewer Communications Management Team – VCM@cnn.com
Radio Shows:
Oprah Radio: https://www.oprah.com/ownshow/plug_form.html?plug_id=505
Magazines:
Oprah Magazine: https://www.oprah.com/ownshow/plug_form.html?plug_id=505
Prevention: editor@prevention.com
Woman’s Day: dailywd@hfmus.com
Ladies Home Journal: support@lhj.com
Good Housekeeping: ghletters@goodhousekeeping.com
You and Me Magazine: submissions@youandmemagazine.com
Ms. Magazine: letterstotheeditor@msmagazine.com
Redbook: redbook@hearst.com
Heart and Soul: editor@heartandsoul.com
Inspired Women Magazine: publisher@inspiredwomenmagazine.com
Women’s Health Magazine: WHOnline@womenshealthmag.com; Erin.Clinton@rodale.com; allisonkeanepr@gmail.com

On-line:
Web MD: onlineservice@webmd.net
Some of the Best Sources:
1. Dr. Laura Berman, Dr. Jennifer Berman, and Oprah:
Hi ladies. In my earlier advocacy article, the NVA founders discuss the importance of making personal connections. Specifically, they note
Personal connections furthered NVA’s goals in other areas too; a “friend” at a foundation helped them get a small grant, for instance. But what if you don’t have those relationships to begin with? Develop them. “Get on the phone and try to make a personal connection with someone,” says Mate. The NVA did this with Drs. Laura and Jennifer Berman— the telegenic urologist-and-psychologist duo. After NVA “made contact” with the Bermans, the sisters discussed vulvodynia before one of the biggest audiences imaginable: Oprah. The NVA website received 10,000 hits in the following week. “You make contact with the right people, and sometimes they can help you along, publicity-wise.”
I believe it is extremely important and beneficial to make a connection with the sister-duo of Dr. Laura and Dr. Jennifer Berman in an effort to advocate regarding the condition of vaginismus and Dr. Pacik’s specific treatment program. This past fall, I submitted my story to them and would encourage you all to do the same via e-mail at: harpocasting.danielle@gmail.com.
2. Courageous Women Magazine: Telishia Berry
This past fall, I submitted my story to Telishia Berry and received the following response via e-mail:
Thanks for having the courage to write us about this and your experiences. Please keep in touch. This iss something we would have to research, but would definitely consider doing an article about it.

Telishia R. Berry
Editor-in-Chief, CW Magazine
http://www.courageouswomanmag.com
I would encourage you all to submit your story via e-mail to Telishia at the following e-mail address: telishiar@yahoo.com