Endometriosis causes severe pain and causes infertility. The pandemic has lengthened the waiting lists for checkups and treatments
In a more or less severe form, endometriosis, a disease that leads to uterine tissue outside the organ that normally should host it and therefore is often referred to as the "out of place" uterus disease, affects many women in Italy.
In times of Covid-19, for those who have to deal with this problem, some problems have worsened, from waiting lists to professional difficulties. To say this are the results of a questionnaire developed by APE – Associazione Progetto Endometriosis.
What the research says
Endometriosis is a complex disease that originates from the abnormal presence of the tissue that lines the inner wall of the uterus, called the endometrium, in other organs (for example, ovaries, tubes, peritoneum, vagina and sometimes also the intestine and bladder), which causes severe pain, so much so as to limit daily life and cause infertility. It must be recognized as soon as possible, which is not always the case, to provide for specific treatment on a case-by-case basis.
The questionnaire of APE, an association that unites patients from all over Italy, is an unprecedented survey, as no other data is available that correlates the effects that the pandemic has had on women with endometriosis in the country. It involved over a thousand women, from 3 August to 17 September 2020, who answered specific questions on access to care, health care and the expenses to be incurred, to develop a global point of view by patients living in chronicity of the disease and who are still without economic-labor protections.
A point of view to bring to the attention of institutions and professionals. 41% of the women interviewed said they feared that they would not be able to be adequately assisted during the lockdown, even for previously scheduled visits or interventions, while 37% feared having to go to the hospital.
“These data – explains Sara Beltrami, co-referent for institutional relations and the protection of women at APE – suggest how the months of lockdown have been faced by patients with anguish. They experienced the pain of the disease without adequate assistance, in an extraordinary and isolating situation. As emerges from the answers, in fact, the idea of having to take urgent care and live with the specter of not being able to do so has accompanied these women for months. A fear justified by 24% of the interviewees who actually found it difficult to receive assistance; partly due to the health crisis, but to a no lesser extent also due to the problems of moving between regions, which denied the possibility of going to specialized centers to receive adequate diagnoses and therapies, or simply to give continuity to the treatment process ".
The impact on waiting lists and treatment
The Covid-19 emergency has further lengthened the expectations for those suffering from this disease and, above all, almost one in two women said that the pandemic had an impact on their access to treatment. Nearly 36% experienced delays or cancellations at previously scheduled endometriosis visits, and over 22% admitted that they had not been contacted to restore them, or had to make contact on their own initiative for this to happen.
Although the progression of endometriosis is relatively slow, these are months of isolation in which patients suffer from a psychophysical point of view, and in which one can potentially witness a worsening of the disease, with avoidable damage through timely and early interventions.
Finally, on the labor front, it should be remembered that sometimes work-related leave for endometriosis is not guaranteed. In some cases, over time, patients have even lost their jobs due to the disease, in the context of a difficult economic situation, which risks increasing inequalities among women, undermining therapeutic adherence and accentuating the inequality gender in access to employment.