Vulvodynia: an invisible condition that requires prompt diagnosis and full recognition

There is a condition that affects 5 million women in Italia, yet remains invisible to this day. Not because it does not exist, but because in 8 out of 10 cases, as revealed by a recent survey, it is ignored, downplayed or even dismissed. It is vulvodynia: a syndrome characterised by persistent pain in the female external genitalia (the vulvar region) associated with a burning sensation and constant itching, in the absence of any clinical abnormalities that would justify the severity of the symptoms. A complex and insidious condition that severely compromises patients’ quality of life, affecting their sexuality (63 per cent), emotional relationships (55 per cent), self-confidence (50 per cent), everyday life in general (46 per cent) and mental wellbeing (43 per cent)2.

Despite its prevalence and impact, vulvodynia is underdiagnosed and frequently misunderstood. It is estimated that more than 7 in 10 Italian women do not know what it is and underestimate how common it is, with as many as 4 in 10 having never even heard of it. Furthermore, recognising the condition remains an uphill struggle: in almost 1 in 2 cases, it is often mistaken for a vaginal infection (46 per cent) or cystitis (41 per cent), whilst in 1 in 4 cases it is even dismissed as a psychosomatic disorder (25 per cent)2. It is therefore not surprising that for one in two patients, the diagnosis came after more than two years, and for around one in four, as late as five years later2.

Added to this is a further critical issue: the trivialisation of the pain caused by vulvodynia, experienced by 8 out of 10 women. As a result, more than 1 in 3 have been told that their pain is “nothing to worry about” and that it is “common among many women”. Other dismissive remarks reported by Italian women with vulvodynia include “stop thinking about it, it’ll pass” (27 per cent), “it’s just a matter of nerves and stress, you just need to calm down” (25 per cent), “there are worse problems than this” (24%)2. These are expressions that not only take their toll on the patient’s state of mind, but also undermine the clinical and social recognition of the condition.

To put a stop to what we experts refer to as the ‘invisibilisation’ of vulvodynia, it is important to focus on four key areas: research, institutional support, training and awareness.

Research is currently making significant progress: we are, in fact, working on new therapeutic and diagnostic research protocols to tackle vulvodynia more effectively and overcome the current obstacles. However, research alone is not enough, and it is therefore necessary to strengthen the institutional framework as well.