Notice for Women of Friuli Venezia Giulia Region, Italy and Europe

MAKE YOUR MEPs SIGN the Written Declaration no. 45 on endometriosis  of September 07, 2015; if it doesn’t reach 400 signatures, it won’t be taken into account by the European Parliament. Furthermore, sign this petition to improve the declaration's text with the following information.

Dear sirs/madams, approximately fifteen million women in Europe suffer from Endometriosis (#1in10) (data are not certain, since, due to the indifference of the Institutions, there’s no prevention, research or an European register on the matter), a chronic, disabling and recurrent disease.

#1in10 Sign for European Women suffering from Endometriosis The disease may affect any woman of reproductive age; the diagnosis is estimated between 5 and 9 years from the onset of symptoms, when many organs are already compromised.

Internal and external endometriosis is a chronic, disabling, recurring and incurable disease and most of the times is diagnosed at a late stage; endometriosis is also a disease that may cause critical damages to several organs (uterus, ovaries, bladder, ureter, kidneys, intestine, rectovaginal fascia, recto-uterine pouch, and in rare it may also affect lungs, diaphragm, liver, nervous system),  that may entail the partial or total removal of the same.

The affected women undergo several operations,, from a minimum of 3 up to 16/18, with damages to organs or removal of the same due to the disease or other damages caused by the operations themselves and from a lack of knowledge by the doctors,   (i.e. intestinal resection, and often, after the operations, the affected women suffer from ostomy for a period of 1-6 months or for life (at very early ages): ostomy is the result of an operation in which an opening is made on the abdominal wall to allow communication between the intestinal or urinary apparatus with the outer side; this operation represents, in many cases, the only way to survive a disease), or even intestinal occlusion (life-threatening condition), etc.. Furthermore, chronical fatigue that makes standing up very difficult. It also causes infertility problems, but first of all it’s necessary to activate researches regarding the physical, social and personal damages suffered by women. Many of these women have a full-blown and unrecognized disability.  Many women cannot afford to cure themselves, many of them have lost their job due to social discrimination, many have to travel for 1000 km to reach a specialist centre, many of them have full-blown and unrecognized disability, the cure does not solve the problem (it slows down the course of the disease, for a certain period of time). Without a job and with no right to receive a disability, many women cannot cure themselves. It is assumed that 70% of young women that suffer from critical menstrual pain (it’s not possible to estimate a percentage for asymptomatic cases), suffer from endometriosis; unfortunately, girls as young as 12 years of age, stay home from school during these periods, and thus they’re not promoted to the next year, losing a year and the possibility to establish a solid base for their future.

Integrations to the existing Declaration:

Multidisciplinary training to doctors: a possible medical training method has been submitted, to create multidisciplinary teams, as integration to the existing Declaration.
We request the Commission and all the Member States to add in the national work contracts of all the Member States that the absence from work of affected women is extended to at least 12 months (it is now 6 months, in Italy) and that, depending on the problems, it may be possible to maintain the job. (inserted this afternoon)

 
In the Twenty-first Century, we’re still fighting for our Right to be Healthy.

Let’s go down this road together.

European Woman suffering from endometriosis

Associazione endometriosi Friuli Venezia Giulia Onlus

Presidente Sonia Manente