National and International Organizations
There are many national and international organizations devoted to sexual medicine. These societies connect doctors and scientists together so that research can be shared and progress made more quickly. Many also have outreach missions for sharing information with the public and some provide information via their websites. I included additional links below to a few well made informational pages, though I found the information about vulvodynia lacking.
International Society of Sexual Medicine (ISSM)
International Society for the Study of Women’s Sexual Health (ISSWSH)
Sexual Medicine Society of North America (SMSNA)
Public Awareness Website: https://www.sexhealthmatters.org/
International Society for the Study of Vulvovaginal Diseases (ISSVD)
Info for patients: https://www.issvd.org/category/patients/
International Pelvic Pain Society (IPPS)
The British Society for the Study of Vulvovaginal Diseases (BSSVD)
National Vulvodynia Association (NVA)
American Physical Therapy Association (APTA) Section on Women’s Health (SoWH)
American Association of Sexuality Educators, Counselors and Therapists (AASECT)
Check out my Twitter! I follow a lot of awesome SexMed docs!
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RT @AshleyGWinter: The vulvar vestibule is not part of the vagina. It is a separate organ. It has different embryological origins. It… https://t.co/bb6ZPYxkJe -
RT @ISSWSH: Lichen sclerosus is a common inflammatory disorder that affects the skin in the areas of the anus and genitals. Che… https://t.co/jmvywGpv7G
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RT @drrachelrubin: Please tell everyone you know about this book if they have pain with sex. @SDSexualMed @jillkrapfmd and team upda… https://t.co/rp8bhPM5Mf
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Soooo first tweet in nearly a year? Oops 🤣 Some life updates🧵
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Find a sexual medicine specialist near you
Some organizations have a “Find a Provider” tool where you can search for society members in your area.
ISSWSH Find a Provider (Worldwide)
ISSM Find a Provider (Worldwide)
NVA Provider List (USA)
BSSVD Clinic Map (UK)
AASECT Locate a Professional (USA, therapists & counselors)
SSTAR Find a Therapist (USA, sex therapists)
The Pelvic Guru has created a directory for all types of providers.
Top Docs!
If you skim the references on my pages, you may notice that you see a few names over and over. There are a few clear thought leaders in the field of sexual medicine and women’s sexual dysfunction. Many of them hold leadership roles in the various societies:
ISSWSH
Current Board of Directors: http://www.isswsh.org/about/board-of-directors
Current Committee Members: http://www.isswsh.org/about/committees
Past Presidents: http://www.isswsh.org/about/past-presidents
ISSM Board of Directors: https://www.issm.info/who-we-are/board-of-directors/
SMSNA Board of Directors: http://www.smsna.org/V1/about/board-of-directors
ISSVD Executive Council: https://www.issvd.org/about-us/executive-council/
IPPS Board of Directors: https://www.pelvicpain.org/IPPS/About/Board_of_Directors/IPPS/Content/About/Board_of_Directors.aspx?hkey=79caf118-aeb2-4b4b-9c76-f97a764ba24c
Dr. Irwin Goldstein, San Diego Sexual Medicine
http://www.sandiegosexualmedicine.com/
Dr. Irwin Goldstein is arguably the leading expert on vulvodynia. Their website provides a lot of information about sexual health in general, and women’s sexual dysfunction specifically.
Dr. Andrew Goldstein & Dr. Jill Krapf, The Centers for Vulvovaginal Disorders, Washington, DC/ New York, NY
Dr. Andrew Goldstein is another leading doctor in women’s sexual dysfunction. The CVVD website provides a lot of good information. Dr. Jill Krapf has an incredible Instagram account and website - these are amazing resources!
Dr. Rachel Rubin, Washington, DC
https://www.rachelrubinmd.com/
Dr. Rachel Rubin did fellowship training in sexual medicine with Dr. Irwin Goldstein. She is opening a new private practice in the Washington, DC area soon - join the waiting list now! And follow her on Twitter!
Dr. James Simon, IntimMedicine, Washington, DC
Dr. James Simon is a past ISSWSH president and a leading expert, especially in menopause. He writes a great blog that has lots of helpful information.
Dr. Sheryl A. Kingsberg
Case Western Reserve University
Dr. Kingsberg is an expert in the psychological aspects of sexual health. She was recently the 2017-2018 President of the North American Menopause Society (NAMS).
Dr. Caroline F. Pukall
Dr. Pukall is also an expert in the psychological aspects of sexual function, dysfunction, and health. She is responsible for much of the research on the psychological management of vulvodynia. She, along with Sophie Bergeron, authored the chapter Psychological Management of Vestibulodynia in the Textbook of Female Sexual Function and Dysfunction.
There are definitely more great doctors worth mentioning, and I will continue to add to this list. If you have a suggestion, let me know!
Research studies about vulvodynia
The best place to look for accurate, up-to-date, scientific information is in scientific journals. This is where scientists publish original, peer reviewed research and clinical trials. It is also where leaders in the field can publish review articles that collect the latest research and give an update. You can search scientific articles using PubMed, a database run by the National Institutes of Health.
https://www.ncbi.nlm.nih.gov/pubmed/
The abstract, the brief summary of the article, is always accessible, even if you aren’t a journal subscriber. Some journal articles are freely available, or open access, and you’ll also be able to see the entire article when you link from the PubMed listing. Some articles will only be available to those who have paid for a journal subscription. If you are trying to get access to an article and need help, please contact me!
You can also search articles within individual journals via their websites. Here are a few:
Sexual Medicine (all open access!!)
Scientific Meeting Notes and Abstracts
Many of the listed organizations hold annual meetings where the member gather to share their work with the rest of the field. Typically, scientists share new results that they have not published yet. I discovered that many of the abstracts and posters are published online! This is another great resource for information! (Note that when research is published in a scientific journal, it undergoes a peer review process. This is an important step for ensuring quality of scientific work. Therefore, keep in mind that any unpublished meeting abstracts/presentations/posters have not yet been through this review process.)
Vulvodynia Support Groups
There are numerous secret Facebook groups devoted to helping women dealing with vulvodynia find community and support. You have to request to join and only the group members can see the content, so you do not need to worry about accidentally broadcasting details to all your Facebook friends.
These 3 groups have mostly women with generalized vulvodynia, but also other types:
Vulvar Vestibulitis Syndrome (VVS) & Vulvodynia Awareness
The Vestibulectomy Surgery and Vestibulodynia Support Group has women with vestibulodynia.
The Husbands and Partners of Vulvodynia / Vestibulodynia / Painful Sex group was created to provide a space for partners to discuss their side and seek support and encouragement.
Other
There are a number of other websites full of great information and personal accounts of life with vulvodynia that I have found very helpful. If you know of another one I should add here, let me know!
The Pelvic Guru https://pelvicguru.com/
This is a fantastic site with loads of great information. It is run by Tracy Sher. I have found The Ultimate Pelvic Anatomy Resource especially helpful.
There are a number of books written by great doctors in the field. I’m in the process of reading many and will mention certain ones here if I find them particularly helpful. Here’s the book list from ISSWSH.