“In the seventh month of pregnancy, I began to feel tremendous tremors and pains, as if a myriad of hot needles pierced my vagina externally. Every day, constantly, even at night, without stopping ». Thus begins, in one breath, the story of Alice Cussotto, who one moment was enjoying the expectation of a child, and the next she was thrown into a nightmare which only months later she would be able to give a name: Vulvodinia.
WHAT IS VULVODINIA
Vulvodynia is a chronic painful syndrome, which affects about 16% of women (incidence underestimated because it is often not diagnosed), but about which very little is still known.
The symptoms, in fact, can be different and range from sensations similar to pinpricks or abrasions in the vulvar area, pain during sexual intercourse, up to dysfunction in urination, burning, irritation, dryness in the vagina, perception of having cuts on the mucosa and much more.
The causes are not yet known. Sometimes it all starts with inflammation of the pudendal nerve but the accused can also be trauma, genetic predisposition or bacterial infections. Alice until the day of the onset of the excruciating pain had not had any signs. “I was fine and serene when the ordeal began. I remember having changed a thousand doctors and they all spoke to me wrongly about candida, treating me accordingly and worsening the situation. In the end I came to the diagnosis but being pregnant I could not do anything, so I lived with the pain until delivery, a planned caesarean because the natural way would have been impossible to follow “.
Subsequently, a course of treatment began for what, in his case, turned out to be an infection of the pudendal nerve due to a type of papilloma virus. «After a year I can say that I have tried everything, from drugs to cortisone and lidocaine injections in the vagina, to physiotherapy. Today the situation has improved a little, even if I alternate between bearable days and others in which the pain does not make me get out of bed. If I think about the future, I have no certainty, neither regarding healing nor the rest of my life. I’m still on maternity leave but I don’t know how I’ll do it afterwards, now I wouldn’t be able to work ».
The manifestations of Vulvodynia are very different from each other and not all are constant over 24 hours, however it is almost always a disabling disease, as confirmed by Bruna Orlandi. “I got sick in 2010, at 33. I always urinated more than normal but nothing else. Then one day, after a thorough medical examination, I started to feel bad. In my case the beginning of everything was something mechanical that caused a sort of tilt in the body and, which led me to pee 60 or 70 times a day, even producing over 4 liters“. At that point for her, as for almost all women united by the disease, the emotional ordeal was added to the physical ordeal.
THE PROBLEM OF NOT BEING BELIEVED
“I went to the doctors and was not believed. In addition to the problem of urination, for which I was told to drink less, and the constant burning, I also felt pain during sexual intercourse. A specialist suggested that I change mate, another that I should have fun in bed and not make me come these paturnias. As if it were all attributable to that sphere and, above all, it was my fault ». Bruna, who is much better today thanks to the right treatment, Alice and many others had to
therefore also deal with loneliness.
«The first step is to convince everyone, even family members often, that you’re not out of your mind»Comments Paola who, on the matter, has also written a book, Despite free, an act of denunciation of the inaction of the medical system and the story of the sense of emptiness in which the victims of Vulvodynia find themselves.
VULVODIANIA ONLINE HELPS WOMEN RECOGNIZE THE PATHOLOGY
To try to make them feel less alone and, above all, to inform them, the Vulvodynia Online project was born, which through an information campaign aims to make this pathology known as much as possible and to create a network between women, doctors and society. «The diagnostic delay can do a lot of damage because if it is not identified in time, Vulvodynia becomes chronic. Those who have it but still don’t know it often spend their nights on Google looking for answers to their doubts, then we have created a site where we describe the most common symptoms in simple wordsHe explains Paola Nicoli, one of the leaders of the initiative that is also developed on Facebook and to which theAIV, Italian Vulvodynia Onlus Association. “Many doctors are not only unprepared, but they don’t really believe in the disease, while we are here to say that it does exist. Until this concept is clarified, it will also be impossible to cope with another problem: the fact that Vulvodynia is not recognized by the National Health Service, and that therefore any cost for treatment is borne by the patients».
THE PROBLEM OF GENDER MEDICINE
On April 7, 2021, the bill to recognize vulvodynia as a disabling disease was filed with the Chamber of Deputies, but while waiting for this to happen, the fight is also gender-based. Yes, because behind the reluctance to talk about it in the appropriate terms there is, as often happens when dealing with the issue of women’s health, the shadow of patriarchy. The first mistake is to associate it only with pain during sexual intercourse, a very common but not always present and unique aspect. «From there, the male-dominated vision is perpetuated according to which a problem in the female sexual sphere does not have to do with reproduction is secondary. It is a cultural factor that both civil society and the medical profession have been carrying on for years. The sexuality of women has always been little investigated, just think that the functioning of the clitoris has been studied in detail for a few decades and that for years there has been talk of hysteria. It is no exaggeration to think that if the same disease, in the mirror, had struck men, perhaps there would already be a solution or the effort in finding it would be greater. Gender medicine is a huge issue and the way in which Vulvodynia is treated is a clear example of this, ”concludes Paola Nicoli.
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