On Friday, November 12, the first conference for the recognition of vulvodynia and pudendal neuropathy was held in Rome, under the patronage of the Chamber of Deputies. These disabling pathologies are as widespread as they are little known by many of the professionals who work in the gynecological, urological and andrological sectors. This often leads to a delay in diagnosis and a consequent worsening of the physical and psychological conditions of those affected due to the lack of timely and targeted care. These pathologies also require expensive treatments that are not guaranteed by the National Health System (SSN).
Since last May, the main non-profit organizations in the sector have been organizing themselves to jointly draft a bill developed on the basis of patient testimonies and validated by a rigorous scientific dossier drawn up by doctors, physiotherapists and professionals in the sector.
Dr. Tili's Pharmacy has already shown great attention to social, health and economic issues in the past. In this process for the recognition of vulvodynia and pudendal neuropathy, it wanted to give even more decisive support. In fact, it contributed financially in a massive way to cover the costs of organizing the events through which politicians, associations and health personnel prepared to present this important bill.
Let's reconstruct together all the stages of this long and virtuous process
Vulvodynia and Pudendal Neuropathy
What are they?
Before reconstructing the stages for the recognition of vulvodynia and pudendal neuropathy, let's clarify these pathologies.
Vulvodynia is a pathology that involves the external genitalia (vulva) and manifests itself with burning, hypersensitivity, difficulty in sexual intercourse, urinary symptoms . It is estimated that it affects 10/15% of the world's female population, but despite this the pathology is not yet recognized by the national health system (SSN).
A similar argument applies to pudendal neuropathy, a pathology characterized by chronic neurogenic perineal pain , linked to compression of the pudendal nerve in the pudendal canal.
It is characterized by severe perineal pain that may extend to the anterior or posterior perineum. The pain worsens when sitting and improves with standing or supine position.
The course of the disease is chronic and traditional analgesics are unable to relieve the pain .
Since they are not recognized by the NHS, these pathologies are not the subject of university training, very few doctors know how to diagnose and treat them and there are no "reimbursable" treatments or other forms of exemption since the pathologies are chronic and disabling.
The result is that those affected by these pathologies are forced to travel long distances to reach the few expert doctors, with consequent delays in diagnosis, in addition to having to sustain high costs for the necessary therapies.
This causes a worsening of the symptomatic picture and often also of the psychological one.
Legislative proposal for the recognition of vulvodynia and pudendal neuropathy
Where are we at?
A first step towards changing things was taken on April 7, 2021. On this date, the Honorable Lucia Scanu, political spokesperson for the proposal, submitted to the Chamber the first bill for the recognition of vulvodynia.
Subsequently, on June 10, 2021, associations dealing with vulvodynia and pudendal neuropathy, together with doctors, psychologists, physiotherapists, midwives and lawyers competent in the field, met with parliamentarian Lucia Scanu. On this occasion, it was decided to write a second bill to be submitted to the Chamber and Senate for the recognition of not only vulvodynia, but also pudendal neuropathy. This second bill, much more detailed and broad, aims to extend protections regardless of gender.
To give credibility and scientific basis to the proposal , on July 22nd about a hundred people reported their testimonies during an open call.
In the same period, a growing number of doctors and specialists began to collect data and scientific evidence in a rigorous scientific dossier to support the need for recognition of these pathologies by the NHS.
The non-profit associations in the sector have also formed a Committee which includes: Cistite.info APS Social Promotion Association, AIV – Italian Vulvodynia Association Onlus, Ainpu Onlus Italian Pudendal Neuropathy Association, Casa Maternità Prima Luce, Viva Vincere Insieme la Vulvodinia Association, Vulvodiniapuntoinfo Onlus Association.
In September, a self-report questionnaire on vulvodynia was published. This was aimed at bringing out data on the syndrome to support the need for a law on the subject. The results of the survey showed that this pathology , contrary to what one might be led to believe, is far from rare .
On October 16th, the transfeminist movement Non Una Di Meno organized a demonstration in the main Italian squares . The aim was to raise public awareness of the main “invisible” pelvic pathologies: vulvodynia, endometriosis, chronic pelvic pain, pudendal neuropathy, fibromyalgia.
The change in points
Tili Pharmacy Funds First Conference on Recognition of Vulvodynia and Pudendal Neuropathy
The most important step to date was the conference on November 12th .
The event was largely funded by Farmacia Tili, the sole sponsor of the initiative.
Farmacia Tili is already playing an active role in the fight against these pelvic pathologies , guaranteeing access to drugs and supplements at a discounted price . The meeting allowed the sector specialists to present the data of the dossier from which the proposed law draws solid scientific bases. The key points to which the second proposed law must adhere were also reiterated and set out in detail:
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Vulvodynia and Pudendal Neuropathy are not rare diseases, they are social diseases that require attention and protection for those affected. For this reason they must be recognized by the NHS as chronic and disabling diseases, with relative exemption from tickets.
At the same time, it is necessary to guarantee the right to work by facilitating the conditions for carrying it out: teleworking, smart working and sick leave. - To ensure multidisciplinary care of patients without forcing them to travel long distances, at least one specialized public health facility is needed for each region of Italy.
- It is essential to have mandatory training and refresher courses for all healthcare personnel who may encounter and treat people with vulvodynia and pudendal neuropathy. It is equally important to stimulate scientific research in the sector that for too long has catalogued the problem as “it’s all in your head”.
- It is important to educate on primary prevention in schools, through health education, and periodic awareness and information campaigns throughout the country.
- Guarantee the right to study through exemption from compulsory school and university attendance, where distance learning is not possible
- It is necessary to introduce a dynamic disability pass that guarantees free access to public or commercial toilets anytime, anywhere.
- It is necessary to establish a National Day for Vulvodynia and Pudendal Neuropathy on November 11th.
The goal will be to try to get the second bill scheduled for submission to the Social Affairs Committee for next autumn .
