International groups and organisations

For UK mailing lists please see our Related UK organisations page.

If you belong to, or know of any vulval pain/vulvodynia support groups outside the UK which are not mentioned here, please let us know so that we can contact them to ask if they would like us to post their group’s contact details here. They can be based online, meet up in person, or both.

Australia

• See the GAIN (Gynaecological Awareness Information Network) page on vulvodynia or contact GAIN via their website. (Language: English)

Austria

•  See details for Verein Vulvodynie in the section for Switzerland elsewhere on this page. (Language: German)

Finland

• Korento ry are a national gynaecological patient organisation in Finland. They offer information and peer support for people living with endometriosis, adenomyosis, PCOS and vulvodynia. (Language: Finnish)
• They also have another website with content aimed at young people, and you can find this at www.moona.info (Languages: Finnish, English, Swedish)

France

• See Les Clés de Vénus for a detailed page on vulvodynia and vestibulodynia, plus a great deal of information, references and links regarding vaginismus and dyspareunia (painful sex) in general. You can also register as a supporter to join their online forum. (Language: French)

Germany

• See details for Verein Vulvodynie in the section for Switzerland elsewhere on this page. (Language: German)

Italy

• See AiV – the Associazione Italiana Vulvodinia. (Language: Italian)
• Associazione VulvodiniaPuntoInfo ONLUS have a lot of information on vulvodynia, including videos and a report you can download. You can also register to join their online forum, and they hold a list of healthcare professionals. VulvodiniaPuntoInfo have listed healthcare professionals on their database as a point of reference since 2010, and this list is completely and exclusively based on positive feedback from women. There is also a section on the forum in which some healthcare professionals correspond directly with patients (‘Il Professionista risponde’). (Language: Italian)   
• Associazione VIVA Vincere Insieme la VulvodiniA provide information on vulvodynia on their website, which also includes a list of healthcare professionals based in Italy. Associazione VIVA are the first Italian association to have been established by women suffering from vulvodynia, and they have already set in motion the process for the formal recognition of vulvodynia by the Italian Ministry of Health. Their aims are to inform and educate medical professionals, and to support women with vulvodynia and their families, by means of conferences, information days, conventions and meetings. (Language: Italian)  

New Zealand

• See Vulvodynia Support New Zealand, or email them at support@vulvodynia.org.nz. (Language: English)

Peru

• There is an international online group which has a Facebook page at https://www.facebook.com/vulvodinias/. The group is based in Peru, but welcomes Spanish speakers from all over the world. The group also has its own separate website, Blog para mujeres que padecen de vulvodinia, which gives information about vulvodynia, plus some useful links. (Language: Spanish)

Poland

• See http://www.vulvodynia.pl/. (Language: Polish)

Spain

• See AEAP-NP – Asociación española de algias perineales y neuralgias pudendas, who have some very detailed pages on vulvodynia and vestibulodynia, plus pages on pudendal neuralgia and myofascial pelvic pain syndrome. You can also join their Facebook group at https://www.facebook.com/groups/548268475249034/. (Language: Spanish)

Switzerland

• Verein Vulvodynie is a sister association of Verein Lichen Sclerosus. Both associations are based in Switzerland, but they also cover Austria and Germany. Their website provides information on vulvodynia, including diagnosis, treatment options, a glossary of terms and general tips for daily management. Registered members of the association have access to a password-protected forum and list of doctors, plus the opportunity to participate in workshops and courses organised by the association. (Language: German)

USA

• The National Vulvodynia Association (Languages: English and Spanish)
• The Vulvar Pain Foundation (Language: English)

Both sites give details of how to subscribe to their publications (note that overseas subscriptions cost more than US ones). Please bear in mind that these two organisations are very US-focused and some of the recommendations and treatments they discuss may not be readily available, if at all, in the UK.

• To join the US-based Vulvar Pain Forum (VPF), send an email to majordomo@lists.jabberwocky.com with the following command in the body of your email message: subscribe vulvarpainforum (Language: English)