In Italy 10-15% of women of reproductive age are affected by endometriosis; the disease affects about 30-50% of women who are infertile or have difficulty conceiving. There are at least 3 million women with full-blown diagnoses. The disease occurs between the ages of 25 and 35, but can also appear in lower age groups. (source: www.salute.gov.it)
It is a disabling disease and considered one of the main causes of infertility.
It is characterized by the presence of the tissue that physiologically covers the inner wall of the uterus, the endometrium, in other parts of the body, mainly in the ovaries, tubes, uterus, utero-sacral ligaments, Douglas cable, bladder, rectum, ureters , kidneys, recto-vaginal septum, external genitalia, can also be found in the navel, limbs, lungs.
It is a healthy tissue but implanted outside its normal site which, under the hormonal influence, undergoes changes during the period of ovulation and menstruation.
What are the causes and treatments?
The causes are not yet known. One of the accredited hypotheses is the passage, caused by uterine contractions that occur during menstruation, of fragments of the endometrium from the uterus into the tubes and from these into the abdomen, with implantation on the peritoneum and on the surface of the pelvic organs, rarely on the liver, diaphragm, pleura and lung.
Unfortunately, there is currently no definitive cure.
The therapies currently used are the hormonal one, that is the prescription of the contraceptive pill and the drugs containing only progestin (progestin pill) that induce a state of pseudogravancy and pseudomenopause.
The other therapy is surgical laporoscopy which can be exploratory and / or diagnostic (exploratory laparoscopy) and interventional (laparoscopy or laparotomy).
Endometriosis and the quality of life
“It's not okay to lose part of your life due to pain and excessive bleeding. It's not good to be forced to stay in bed 2 or 3 days a month. It is not fine to have pain during sexual activity".
The words of the American actress Susan Sarandon (suffering from endometriosis who was told she could never become a mother, ed), during the ceremony of the American Endometrosis Foundation (2011).
Endometriosis affects the psychological and sexual quality of life of women affected by it. Unfortunately, it is often diagnosed in an advanced state after a long journey because the symptoms, the most common and frequent, such as dysmenorrhea, pelvic pain, pain during intercourse, are underestimated.
It is therefore very important to keep public opinion high through greater information and knowledge of the disease.
Endometriosis Project Association (APE)
In Italy, since 2005, it is present and operates the Endometriosis Project Association (BEE.).
It is a national association of patients, which operates exclusively on a voluntary basis, with the main objective of promoting information in relation to endometriosis for women, their families, health personnel and institutions in order to raise public awareness. and support those affected.
Not only in Italy. APE made its voice heard even beyond national borders: it was the first association to have organized a conference on endometriosis in February 2019 at the European Parliament in Brussels.
“When APE was born - he explained Jessica Fiorini, APE Vice President- there was very little talk of endometriosis. Nowadays fortunately the disease is beginning to be better known or better, we hear more about it but this does not mean that people actually know what it is. Unfortunately, we still often hear banalities such as " have a baby and it will go away", which means that the work that an association like ours does to inform correctly is still needed".
Help and support are offered to women with endometriosis and their families through the constant and continuous commitment of the volunteers in charge of the association's support groups.
To find out more, our interview with Jessica Fiorini.
What does your business consist of?
Our business is multiple. As an association, our goal is to inform as many people as possible through awareness campaigns in schools, clinics and GPs (general practitioners).
In addition, we are dedicated to the free training of medical staff: gynecologists, sonographers, psychologists and psychotherapists.
In 2012, the ComendereEndo project was born. It is about "Early information" thanks to which the necessary information is provided to know that endometriosis exists and how to recognize its symptoms. To continue to inform young students even in this difficult period of pandemic, we have made an animated short film "RipartEndo da me" which in recent months many schools are showing.
The training of health personnel is also very important.
Since 2017 we have given life to a new training project that has resulted, up to now, with three courses entirely funded by us dedicated to training on diagnostics for endometriosis for gynecologists and sonographers, and two courses, unique of their kind, genre, dedicated to Psychologists and Psychotherapists.
The importance of early diagnosis. How to support women and improve their quality of life?
The first major milestone for a woman with endometriosis is to receive the diagnosis because this is the starting point for being able to take care of herself. Discovering that you have endometriosis is not a trivial matter and what we as an association aim to do, within the limits of our means and possibilities, is to provide women with all the support and information necessary to deal with it. From the list of specialized public centers, to psychological support through support meetings, to information on what can help you feel better: nutrition, physical activity, lifestyle.
Only those who have fought or are fighting endometriosis can fully understand the disease?
The sharing, the support, the listening and the look of those who know perfectly what the emotions, fears and anxieties of the person are during a meeting, can become the therapy to obtain advantages from the psychological point of view that are inevitably reflected on the physical level. bringing benefit and a different perception of pain and suffering.
March is Endometriosis Awareness Month
The month of March is dedicated to the awareness of endometriosis with initiatives, events, meetings to keep the public opinion on the pathology always high.
APE launched the initiative Aware Showcases: Those who have a shop can join by displaying the BEE balloons and information material during the month of March.
This year the initiative has become a real photo contest. Until March 31 it is possible to vote for a showcase and participate in the draw for a prize.
The idea of the project also comes from Jessica's personal experience, she too fought against endometriosis.
"After I was operated on - said Jessica Fiorini - I thought I was suffering from a rare disease because I had never heard of it and no one among the people I frequented knew about it. One day a colleague brought me a leaflet from the Association that she had found in the doctor's office and from there I checked out, I visited the site and first of all I discovered that I did not suffer from a rare disease, that I was not alone. Hence the desire to volunteer so that endometriosis became less unknown to everyone. Shops are the soul of cities and towns, we realized this in the last year when they were closed, in many cases they can also contribute to the spread of good causes like this one ".
APE is always at the forefront in promoting information to create awareness and does so with numerous projects and initiatives also through the use of social channels.
Last year on the occasion of the Women's Day there was the social information campaign #parlare without filters.
“With the hashtag 1TP3 Speak without filters we asked those who wanted to talk about their experience in total transparency. A message of strength in which all women can and must have a voice ”, explained Jessica Fiorini.
The initiative joins #sapereagire, with the sharing of videos in Instagram stories tagging @apendometriosis.
“Starting from the concept of limit - he added - we want to communicate that obstacles such as endometriosis, as well as many life events and other diseases, can be a starting point for reacting. To do this you need awareness ".
This year's social campaign sees the participation of some influencers.
On Instagram with the hashtag #ioticredo underline the importance of listening and believing to women with Endometrosis.
“Endometriosis is a difficult disease to diagnose and the symptoms can be mistaken for something else - concluded Fiorini - Also for this reason women suffering from the disease are not believed, adding an emotional suffering to the physical one. APE on the occasion of the month of awareness of endometriosis has become the spokesperson for the challenge on Instagram #ioticredo ".