Vulvodynia and pudendal neuropathy: seeking recognition as chronic and disabling conditions

In 2022, the Vulvodynia and Pudendal Neuropathy Committee submitted a multi-party bill to the Senate and the Chamber of Deputies, seeking official recognition of vulvodynia and pudendal neuropathy as chronic and disabling diseases and their inclusion in the Essential Levels of Care provided by the National Health Service. Two years later, institutions remain silent despite social media and grassroots awareness efforts, leaving affected individuals without support. On November 11, World Awareness Day for these conditions, we return to this topic because conditions like vulvodynia—which affects 1 in 7 women (or those assigned female at birth) and costs them between 300 and 500 euros per month for treatment—cannot be ignored.

The Requests of the Vulvodynia and Pudendal Neuropathy Committee

In addition to the recognition of vulvodynia and pudendal neuropathy in the Essential Levels of Care as chronic and disabling diseases, the 2022 proposed law also calls for:

• The establishment of a specialized public facility in each Italian region;
• The creation of a national commission to issue guidelines for Diagnostic and Therapeutic Care Plans;
• The establishment of a national data registry;
• The promotion of mandatory medical education;
• Funding to support research;
• Easier access to remote learning for students;
• Facilitated access to remote work and telecommuting for workers, and additional sick leave based on the severity of the condition;
• Primary prevention activities in schools, awareness and information campaigns;
• The establishment of a national day for vulvodynia and pudendal neuropathy awareness on November 11 (an informal date known as Vulvodynia Day since 2016).

Invisible Pain

Historically, diseases affecting women have been denied, minimized, neglected, and dismissed as psychological issues by those responsible for treatment. Hundreds of testimonials recount the experiences of women seeking help for vulvar pain, frequent infections, and discomfort during activities such as cycling, sports, or sexual intercourse, only to be labeled “hypochondriacs” or worse. Even when they are believed, serious diagnostic delays occur, mainly due to inadequate medical training and insufficient research funding. Adding to the pain and neglect, patients bear an average cost of about 400 euros per month for treatment, specialist visits, therapies, and medications, all at their own expense.

When Will Vulvodynia and Pudendal Neuropathy Be Recognized as Chronic and Disabling Diseases?

Given the limited progress to date and statements by various political parties that these issues are not priorities, the Vulvodynia and Pudendal Neuropathy Committee—representing associations, patients, and professionals across Italy advocating for these syndromes—has pursued the formal recognition process for vulvodynia and pudendal neuropathy within the Essential Levels of Care as chronic and disabling diseases, as proposed by the Ministry of Health. It is a long and complex journey: the 2020 Essential Levels of Care revisions have yet to be implemented. Meanwhile, millions of people are left to face the social and professional impacts of these conditions alone. So-called “invisible” diseases are not just a problem for those affected; they are a medical, social, and political issue. Therefore, it is crucial to raise awareness, share personal stories, build community, and speak out until these conditions are no longer “invisible” and receive the rights, protections, financial support, and integrated and updated care they deserve.