Help Raise Awareness

What We’ve Done to Raise Awareness:

We have spoken to community physicians through formalized “Continuing Medical Education” & Conference events in hopes of educating them on the diagnosis of Provoked Vestibulodynia

  • Yong, P., Sadownik, L. & Brotto, A. Concurrent deep-superficial dyspareunia: prevalence, associations, and outcomes. Paper presented at the annual meeting of the Society for Obstetrics and Gynaecologists of Canada: June 2014; Ottawa, ON,  Winner, Best Oral Presentation (Gynecology).
  • Brotto , L. A. Is it all in my head? Multidisciplinary Treatment of Provoked Vestibulodynia. Department of Ob/Gyn, Queen’s University: February 27, 2014; Kingston, ON.
  • Brotto, L.A., & Sadownik, L.A. Vulvodynia: Development of a Multidisciplinary Vulvodynia Program. Society of Obstetricians and Gynaecologists of Canada annual clinical meeting: October 2013; Royal Caribbean Cruise, Mediterranean.
  • Brotto, L. Mindfulness-Based Cognitive Therapy for Provoked Vestibulodynia. Department of Obstetrics & Gynaecology VGH Grand Rounds: April 10, 2013; Vancouver, BC.
  • van Tongren, C., Sadownik, L. Smith, K., Basson, R. & Brotto, L. Provoked Vestibulodynia and Impact on the relationship: A partner’s perspective. UBC Department of Obstetrics and Gynaecology, Annual Academic Day: March 2013; Vancouver, BC.
  • Sadownik, L. A Partner’s Perspective of the Impact of Provoked Vestibulodynia. International Society for the Study of Vulvovaginal Disease 2013 World Congress: October 11, 2013. Calgary, AB.
  • Brotto, L. A. A multidisciplinary vulvodynia program for treating women with Provoked Vestibulodynia. Canadian Pain Society: May 2012; Whistler, BC.
  • Moses, M. H., Brotto, L. A., Smith, K. B., Sadownik, L. A., & Thompson, S. Seeking treatment for provoked vestibulodynia: A descriptive analysis of previous healthcare experiences. Oral presentation at the annual meeting of the International Society for the Study of Women’s Sexual Health: February 2012; Jerusalem, Israel.
  • Sadownik, L. A., Brotto, L. A., Seal, B. N., Dayan, M. & Thomson, S. Impact of a Multidisciplinary Vulvodynia Program on women with Provoked Vestibulodynia. Oral paper presented at the International Society for the Study of Vulvar Diseases Scientific Congress: Sept 2011; Paris, France.
  • Sadownik, L. A., Brotto, L. A., Seal, B., Dayan, M., & Thomson, S. Provoked Vestibulodynia: A retrospective study of women’s experiences before diagnosis. Paper presented at the Annual meeting of the Society for Obstetrics and Gynaecologists of Canada: June 2011; Vancouver, BC.
  • Seal, B.N. & Dayan, M. Vulvodynia. Annual Women’s Health Update: May 2011; Vancouver, BC.
  • Brotto, L.A., & Sadownik, L.A. Multidisciplinary Vulvodynia Program: Patient Characteristics and program efficacy. Department of Gynaecology Grand Rounds: May 2011; Vancouver, BC.

We have been featured in the media

We have provided free educational events to the public

What Can You Do?

Share your story

Although provoked vestibulodynia (PVD) is very common – affecting approximately one in every seven women – the vast majority of women (and even healthcare providers) are unfamiliar with the condition. The result is that many women with PVD spend months to years trying to figure out what is going on and what treatments are available. Further, because of the parts of the body affected by this pain condition, many women with PVD are hesitant to speak about their experiences openly. This can be an extra barrier to seeking treatment and results in many women suffering alone and in silence.

The MVP is dedicated to furthering the health and well-being of women living with provoked vestibulodynia (PVD). This includes a commitment to education through knowledge dissemination and media coverage. However, education and media coverage are most effective when they include information from people who have experienced provoked vestibulodynia and/or its effects first-hand. In fact, many television, radio, and print-based media will only cover a story if there are first-hand accounts that can be included in the piece.

Sharing your story can be a fantastic way to help others learn about this condition, learn about treatment options, and know that they are not alone!

There are several options for sharing your story including:

  1. Emailing your story or a brief testimonial to us at mvp@vch.ca. Your story will then be used on our website and other print-based outreach efforts designed to build awareness about this condition. Please indicate whether you are comfortable with having your full name used or whether you prefer to be anonymous.
  2. Emailing us at mvp@vch.ca if you are open to considering requests for media interviews. If you indicate your interest to us, we will provide you with information about media requests as we receive them. You can then decide if you are interested and whether you would like us to pass on your contact information. We will never give your contact information to any media sources unless you give us specific consent to do so. If you are interested in considering participating in future media stories on vulvodynia and PVD but would prefer to remain anonymous, please note that we can make this request to media sources.
  3. If you took part in the MVP and/or have found other treatments that worked for you, send us an email to mvp@vch.ca describing what you believe helped you the most. Patients regularly ask us “Will I get better?” and we want to let them know that, “YES, women do get better!”

 

Become an advocate

Because PVD and other genital pain conditions are rarely talked about, few resources are allocated to helping women with these conditions. Please consider helping to raise awareness about these conditions through one of the following

  • Write a letter to the media requesting that they increase coverage about this condition
  • If you have contacts in the media that would be interested in doing a story about the MVP or PVD, please let us know.
  • Write to your local MLA outlining the need for more research and support for programs to help women with genital pain. Please see the  for ideas of what you can write.
  • Write to Vancouver Coastal Health (through vch.ca) outlining the need for more research and support for programs to help women with genital pain. Please see the template for ideas of what you can write.
  • The MVProgram was made possible through a very generous donation from Mrs. Leslie Diamond who wanted to help women with vulvodynia. We are incredibly grateful for her support and want her to know the impact her support has had. Please consider personally thanking her and letting her know about your story. Please see the template for ideas of what you can write.

 

Start up funds for the Multidisciplinary Vulvodynia Program comes from a generous donation from the Leslie Diamond Foundation. Donations to the MVProgram can be made online, by phone, by mail or in-person at the office of VGH & UBC Hospital Foundation, the registered charity for VGH, UBC Hospital, GF Strong Rehab Centre and the Vancouver Coastal Health Research Institute. Please visit VGH & UBC Hospital Foundation at www.vghfoundation.ca to learn more. To make a secure on-line donation:

  1. Go to vghfoundation.ca/donate
  2. For the question, “I would like my donation to go to…”, click on “Other”.
  3. For the question, “Which area would you like to support?”, type in Multidisciplinary Vulvodynia Program.

 

Take Part in Research

Research on PVD and other genital pain conditions is still in its early stages and there is much we don’t know. Research is vital to identifying the most effective treatments for these conditions. Currently, there are several research studies that are focused on furthering our understanding of PVD and its treatments. Please consider participating!

COMFORT Study: Cognitive Therapy or Mindfulness for the treatment of PVD

Women with Provoked Vestibulodynia (PVD; pain in the vulvar vestibule) are invited to take part in a study examining the effectiveness of 8 weekly 2-hour group sessions focused on mindfulness meditation skills in comparison to 8 weekly 2-hour group sessions focused on cognitive behavioural therapy.  Both treatments have been shown to be effective for pain management and improved sexual well-being. Treatment is provided by facilitators with considerable experience working with women who have genital pain. Treatments are provided free of charge and participants are compensated for completing assessment measures at various times throughout the treatment.

http://www.obgyn.ubc.ca/SexualHealth/studies/special_populations.php#comfort

 

PRECIOUS Study Phase II: Pregnancy, Childbirth Intentions, and Outcomes under Sexual Pain

Phase II of the PRECIOUS Study is aimed at understanding how chronic genital pain and/or pain during sexual intercourse may affect and be affected by pregnancy and childbirth. To date, very little research has examined this topic & healthcare providers have very little information to provide to women with genital pain about pregnancy and delivery.

What does this study involve?

  • A brief telephone screening (approximately 10-15 minutes) to determine eligibility that includes questions about genital pain and/or pain during intercourse.
  • Women who are eligible for the study will then complete questions over the Internet at 3 time points (during their 2nd or 3rd trimester; 3 months post-partum; 6 months post-partum).
  • Each survey will take approximately 20 minutes or less.
  • An honorarium is provided.

Entry criteria:

  • Must be 19 years of age or older;
  • Must be: 1) a PREGNANT woman who has been diagnosed in the past with Vulvodynia or Provoked Vestibulodynia (PVD, formerly called Vulvar Vestibulitis Syndrome; or 2) a PREGNANT woman without chronic genital pain.
  • Must be able to read, write, and speak English fluently

http://www.obgyn.ubc.ca/SexualHealth/studies/special_populations.php#precious2

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