“When I had my first period at 12, my life changed. During my period my friends went out, played, had a “normal” life, I didn’t ». These are the words of an anonymous testimony published on the Facebook page of Non Una Di Meno, in view of the Sensibile Invisibile garrison, a mobilization that today will animate the squares throughout Italy to give voice to many stories like this one. «I had excruciating pains – continues the story – and real internal bleeding. I was also hospitalized, but “it’s normal” they all told me, you are a woman, a heavy period is a symptom of health, you will have many children “.
A woman tells about her suffering and is not believed, on the contrary she is told that her pain is only in her head and therefore she would do better to stop complaining, to suffer in silence. Sound familiar?
«I was in excruciating pain – he continues – I couldn’t go out, study, play basketball, talk. It’s only 5 days, they told me, how many stories, it’s perfectly normal, you’re a woman! ». This person at 22 will receive a diagnosis of endometriosis, after ten years from the beginning of his symptoms, after ten years in which he had to live with the pain he felt without being able to cure it, having to accept the limitations on his life that this entailed.
Endometriosis is a disease originating from the presence of the endometrium in other organs other than the uterus. Although it is a very widespread disorder since it affects 10-15 percent of people assigned to be females at birth (in Italy there are at least 3 million full-blown diagnoses), the knowledge of this disease is not as extensive, nor are the treatments equally accessible. “In 2017, endometriosis was included in Lea (essential levels of care, ed) of the National Health System – says Silvia Carabelli, activist of Non Una Di Meno – but the protections are not enough ».
Only those who have a diagnosis of endometriosis at the third or fourth degree, in fact, can have the right to benefit from some specialized services free of charge. “The degrees established by the National Health Service are not related to the severity of the symptoms that the person experiences – comments Silvia – This means that all other people, even if they have very severe symptoms, cannot take advantage of the exemptions, nor take sick days” .
The fact that endometriosis – in its third and fourth stages – falls under Lea, means that this disease is recognized by the National Health Service in the list of chronic and disabling diseases, last updated in 2017. But the list is far from complete.
“Vulvodynia, pudendal neuropathy and fibromyalgia are currently not recognized by the National Health Service – continues Silvia – and in the Invisible Sensitive Devices we want to underline the urgency of their inclusion in Lea, as well as asking for greater safeguards with respect to endometriosis”. The absence of recognition in the NHS of these diseases, in addition to the lack of labor and economic protection for those who suffer from them, also entails the fact that they are studied less. The consequence is a serious diagnostic delay: five years on average for vulvodynia, seven for endometriosis.
In the mobilization that today will see more than 20 Italian cities take to the streets, many associations took part that for years have been offering services and disseminating these diseases. One of them is Vulvodinia.info. «I heard the word ‘vulvodynia’ for the first time in 2005, I had been suffering from it for four years and I was told that the problem was simply in my head», says Elena Tione, founder of the association. «The problem – he observes – is that this word simply means“ vulvar pain ”. But it is not only pain, it is a burning similar to a burn that never goes away ».
A few years later, in 2010, the forum will be born, the first online organization dedicated exclusively to vulvodynia, with the aim of networking people who, like Elena, could not find an adequate diagnosis for their symptoms, sharing information and contacts of doctors who specialize in this disorder.
But what is vulvodynia? It is a chronic syndrome characterized by vulvar pain not clinically attributable to another cause. “The channels for the transport of messages from the vulva to the brain no longer work in the correct way but become hypersensitive: as soon as they receive a small stimulus they perceive it as very painful”, explains Rosanna Piancone, founder of the Cistite.info Aps association. This involves such a sensitivity that it makes the life of those who suffer from it almost impossible: “It means having pain during sexual intercourse – continues Rosanna – but also in wearing pants with a tight crotch, in contact with the chlorine of the swimming pool or with the sea salt, with a synthetic fabric or when you are menstruating: the blood bothers, is irritating ».
The problem, explains Rosanna, is that the tests that try to find a cause for these pains give negative results: «Visually there is nothing pathological. It is these nerve fibers that have deteriorated for a variety of reasons that are not yet fully understood. Vulvodynia remains so invisible »The medical staff who do not know this disease simply do not detect anything that is wrong in the patient’s body and are led to attribute the cause to an alleged female mental fragility. Hence the numerous testimonies ranging from “it’s just stress” to “why don’t you try to masturbate?”, Passing through “have a glass of wine every now and then”, to conclude with a nice “make a child that passes you”.
In this regard, Sabrina Albanesi, of the Cfu Italia association, speaks of “medical nomadism”: “It is not easy to find a doctor who is able to make an exact diagnosis – she says – and this leads many people to have to turn many medical studies completely at the expense own “.
Cfu Italia is an association created to disseminate and network people suffering from fibromyalgia, a condition characterized by widespread chronic muscle pain associated with stiffness, which, says Sabrina: “It affects about four million people, 90 percent women “. Diagnosis is particularly difficult because, to date, we proceed by exclusion. «Precisely for this reason – explains Sabrina – we have started a fundraiser to support the Isal Foundation research on the biomarker, which has almost reached the final stage. It is a very important and Italian discovery, it will allow not only to have a diagnosis with a simple blood test, it will also open the doors to research to find a cure ».
But how is it possible that there is still so little knowledge of the pathologies that can affect the female body? “Medicine is the daughter of the patriarchal society that gave birth to it – says Silvia, of Non Una Di Meno – clinical pharmacological trials have always been conducted mainly on male bodies of more or less 70 kg, obviously white, considered as a yardstick universal. We therefore speak of patriarchal medicine, meaning an institution that is not detached from the historical, social and political contest in which it is inserted but which is precisely the daughter of that history “.
A story that can change and is already doing so, both in the daily work of realities such as Cistite.info, Vulvodinia.info, Cfu Italia and all the other associations that have joined the mobilization of Non Una Di Meno, and in initiatives such as those we they will be all over Italy today. In some cities at 11 am, in others starting at 3 pm.
Here the Facebook event to understand how and where to participate.
All photos from the DINAMOpress archive.