Blog by Evelyne Para, Soroptimist International Representative at UNESCO, Paris.
Like Soroptimist International France, which developed a specific national action program in 2016-2018 to bring this disease out of the shadows, several countries and Soroptimist clubs are now taking this path to improve the health and well-being of women.
Serious consequences for women’s health and quality of life
Endometriosis is a little-known chronic disease affecting 10 per cent to 20 per cent of women of reproductive age, representing more than 180 million women worldwide, including 14 million in Europe.
It is a deeply intimate disease that has serious consequences for the health and quality of life of the women who suffer from it. It impacts their mental well-being and their social lives. It is not simply a disease in the physical sense; it also causes emotional and social suffering.
Endometriosis: painful and debilitating symptoms
It is characterised by the presence of tissue similar to the endometrium (the tissue lining the uterus) outside the uterine cavity. This tissue then adheres to and causes lesions on other organs: the ovaries, small intestine, vagina, bladder, and abdominal wall. More rarely, this tissue can be present on other organs such as the lungs, kidneys, or skin scars.
These foci proliferate, bleed, and leave fibrous scars with each menstrual cycle. They thicken and bleed, but are not expelled through the natural channels during menstruation. This then causes lesions, nodules, or cysts in the areas where they are located, as well as inflammatory reactions with the formation of scar tissue and adhesions between neighbouring organs.
The main symptoms are therefore pain during menstruation and/or ovulation, often chronic abdominal and pelvic pain, pain during sexual intercourse, and significant digestive and/or urinary problems…
The precise causes of this condition are not fully understood. However, medical teams and researchers are working on the potential role of several factors: genetic and hereditary, immune, and environmental (the role of endocrine disruptors, for example).
Women’s lives turned upside down
Endometriosis is primarily a pain in a woman’s intimate area. A very intense, debilitating pain. A pain that goes unheard, unheard, and this is what worsens the disease. This is one of the first messages to convey: listen to women’s pain, because a woman in pain it’s not normal, and it’s not because she’s “a wimp.”
The disease is ignored because we have internalised, in our culture that being a woman means pain. A woman is expected to experience pain during childbirth, pain during her period, during her first sexual encounters, and so on… and we haven’t learned to listen to women’s pain.
This pain, which initially was cyclical (during menstruation), will become constant as the disease progresses. And then we arrive at the second symptom of endometriosis: infertility.
Indeed, many women have difficulty having children… Endometriosis is the leading cause of female infertility, and it is still very often when a woman is unable to have a child (decreased egg quality, atrophied endometrium not conducive to implantation, pain that hinders successful sexual intercourse…) that the diagnosis of endometriosis is made, when other symptoms could probably have raised concerns beforehand.
A significant delay in diagnosis, and medical research that still needs to progress…
Influenced by numerous taboos surrounding menstruation and female pain, women often delay seeking medical help. At the same time, general practitioners, often with little or no training in this condition, tend to underestimate patients’ pain and prescribe pills that can mask the early symptoms of the disease.
This results in an average delay of 10 years between the onset of the first symptoms and diagnosis! However, the earlier the diagnosis and treatment begin, the better the patient’s quality of life and fertility can be.
Currently, there is no specific treatment for endometriosis. Surgery is recommended when medical and hormonal treatments are no longer sufficient to effectively relieve the patient’s pain, and in some cases, when surgery is necessary to remove the lesions. Medical research in this area still needs to progress.
Actions undertaken by Soroptimist International France since 2017-2018 have led to significant progress in the fight against Endometriosis.
Committed in early 2017 to working alongside the ENDOmind France Association, a recognised public interest organisation, SI France has undertaken the significant task of raising awareness of this disease, which has remained largely unknown, helping to reduce diagnostic delays, improving treatment, and supporting research to study the factors that cause endometriosis.
This constructive partnership has led to improvements in the situation for women with endometriosis in France: numerous conferences have been organised to raise awareness among women, particularly young women, and to communicate with the general public and the medical community. It was also essential that the perspectives and experiences of patients, as they live with endometriosis, be acknowledged, heard, and respected.
Since then, the management of this disease has improved in France, and our joint efforts have been rewarded. We can only hope that these efforts will continue, and that this essential progress will also be developed in all countries of the world to protect the health of the women affected, as well as their families who often indirectly suffer the effects of this disease.
To all Soroptimist clubs wishing to develop this Endometriosis Program, which falls under the Women’s Health action area, we are at your disposal!
