That pain of women that health care does not recognize: vulvodynia and endometriosis, a problem also in Trentino

TRENTO. Widespread, disabling and chronic diseases. But invisible: because little is said about them, because they are often belittled, because the right to treatment is not recognized, because they concern organs and areas of the body that are still taboo. For these reasons, talking about it and providing information is essential. And if the first step in the battle to raise awareness is made thanks to the notoriety of a young model and influencer, as well as Damiano dei Maneskin’s girlfriend, or Giorgia Soleri, so be it.

We are talking, to get into the specifics of vulvodynia, pudendal neuropathy, endometriosis and adenomyosis. Different diseases but all “complicated”, to be explained, diagnosed and treated. But certainly not rare. It is estimated, thanks to some scientific studies, that vulvodynia affects one in seven women and endometriosis one in ten in Italy.

In Trentino there are no official numbers, also because these diseases are not yet recognized in the Essential Levels of Assistance (LEA) by the National Health Service, but considering that vulvodynia mainly affects women of childbearing age, approximately between 18 and 40 years and that these in the province there are 62,000, we can estimate that there are about 9,000 in the Trentino struggling with this disease. One in seven, in fact.

To better explain the situation, general and local, is Cecilia Bighelli. «The Committee was set up at a national level in the summer of 2021. We do not yet have presidents in the area, but we have already implemented awareness-raising initiatives in Trentino as well. The group is growing and in recent days there has been an important step at a political level, with the directors Paolo Zanella, Paola Demagri and Luca Zeni who presented a motion that was fundamental for us that was written together with the Committee and associations that dealing with endometriosis ».

Summarizing and citing Paolo Zanella, the Province is asked «to recognize a series of chronic and disabling pathologies. In this regard, three bills were deposited in Parliament and three motions were approved in Veneto, Piedmont and Lazio and another nine were filed in as many regions. Failure to include these pathologies in the LEA means that the treatments and therapies are currently entirely borne by the patients and it is estimated that a person suffering from one of these chronic diseases spends more than 20,000 euros during the entire treatment process and that these expenses are often unsustainable, forcing many people to forgo treatment. The lack of knowledge and adequate information, unfortunately also in the health sector, involves a considerable diagnostic delay and an individual and collective burden on a psychological, social and economic level. In particular, the Council is asked to include these diseases in the list of chronic and disabling ones, as supplementary provincial assistance extra LEA, to start an increase in the skills of all health professionals who can meet people affected by these diseases, to identify at least one provincial public health unit of reference for pelvic pain, to establish provincial registers and to promote information and awareness campaigns “.

To go into more detail, let’s go back to Cecilia Bighelli: «One of the crucial problems is the lack of knowledge on the part of the medical profession itself. Because? It is a question of training, they are diseases that are not taught. And there is also a normalizing component of female pain: the common thought is that some pain during menstruation or during intercourse is normal. All this causes a diagnostic delay, quantifiable in 4 and a half years on average for vulvodynia and 7-9 for endometriosis. We are working on providing information and creating “lists” of doctors to contact. Then there is the issue of costs, which are fully borne by the patients. Fortunately, a lot of activism has been created around these issues, with many young people involved, for whom it is no longer taboo to talk about pain and problems related to sexuality and reproductive organs. In this sense there are also psychological aspects: the failure to recognize symptoms and pains by doctors and by those close to us, such as friends or relatives, is a problem. As well as belittling and not taking these diseases seriously. Which are not of series B. We hope that something will move, an important first step would be that the motion in the council would pass ».

The witness

Courage and awareness. Skills (acquired in the field, over the years) and clear objectives. Mariafrancesca, thirty, 31 years old, PhD student in pedagogy, has all these characteristics. And thanks to these she agrees to tell her own story. From pain to diagnosis, from collapse to surgery, up to now, with an Instagram page (@endo_andme) to inform and raise awareness.

“I was in pain as a teenager, but nothing too bad. Then, around the age of 25, they increased, becoming chronic. In addition to the pain in the pelvic area, a constant fever and intense neuropathic pain in the lower limbs also came. I used to go to the doctors, but they told me I was anxious and to ride a bicycle. I practically went around all the departments of the Santa Chiara, but in the end I had to go outside the province and the diagnosis arrived: endometriosis. But more than 3 years have passed since the collapse. Three years of many questions and no answers, and increasing expenses. With life turned upside down without knowing why ». His first advice is to contact doctors and specialized centers.

There aren’t any in Trentino, but in Italy they do. “For endometriosis I went to Negrar, while for vulvodynia I turned to a center in Bergamo. In Negrar I was operated on three years ago: not everything was resolved, but the surgery certainly helped to reduce the pain and avoid greater damage than there was. Then, as in any disease, there are subjective aspects: there are those who recover quickly and completely, some less. In this sense it must be said that a cure does not exist: it is a false myth, because we are talking about a chronic disease, whose therapies – hormonal, with the pill – allow more than anything else to act on the symptoms ».

After the surgery, the recovery was long, but Mariafrancesca did not give up. And she, indeed, she wanted to put her face to it for many other people. “I was able to talk about my problems with family and friends, I was never ashamed, I did not experience suffering as a taboo and I was able to face the huge medical costs of the operation. Other people don’t have this luck and live with pain. But beware: pain is never normal, it never has to be. Also for these reasons I opened an Instagram page: I don’t have many followers (in any case there are three thousand, not bad ed), but many write to me and share experiences, saying they no longer feel alone after reading my posts and they feel understood in theirs. suffering. It is important that we talk about it: from payments for care to workplace protections up to correct information on the disease, about which so many false myths still circulate, there are many objectives to be achieved “. And she talks about it. With courage, because a testimony can be of help for many people.

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