The right to health and the right not to be discriminated against are two of the human rights included within the UN’s Declaration for the Human Rights. But very few people – including the ones that work within the healthcare – know about the disease endometriosis that affects 10 % of all women in their reproductive years.
Symptoms that may occur are infertility, pain so severe that it will inhibit the woman’s day to day activities, and fatigue. It takes in general 7 years from the woman’s first experience of her symptoms to when she gets the diagnose, so many will live their lives with the pain coming and going as a normal part of their life. How is it that this can continue?
The women that seek treatment are viewed as hysteric – a state of mind or behaviour that is named after the Greek word for womb (hystera) due to the belief that hysteria was caused by disturbances of the uterus – and are told to seek up psychologists or other treatments that has nothing to do with actually treating the endometriosis.Many women are told that this pain, that won’t disappear after taking regular painkillers, is part of what it is to have menstruation – a natural part of being a woman. This pain that makes some women vomit and stay in bed at home – missing out on their right to education or their right to work, or both – is not natural. It is caused by tissue that is similar to the lining of the uterus, placed in other places within the body than the lining of the uterus. This tissue will cause tremendous pain – which varies according to where it is placed. Just imagine having cysts full of blood growing on some of your nerves bleeding monthly.
More research needs to be done about endometriosis – no cure or prevention has yet been found – but there are treatments that can improve the quality of life for the women affected. These include hormonal treatments, to suppress the menstrual period to prevent the monthly bleeding, and surgery. The hormonal treatments alleviate the pain temporarily and have side-effects but laparoscopic surgery is needed in order to both diagnose and remove it. The surgery can be effective to remove endometriosis lesions and scar tissue, but success rates are dependent on the extent of disease and the surgeon’s skills.
Further obstacles that women with endometriosis have to overcome are the reactions from their near and dear ones. They may doubt that the condition even exist or deny it with the hope of making it disappear. But it’s real and the best way to actually make it disappear is by educating ourselves – both doctors as well as citizens – and give support to the affected ones. If you want to reach the national support group within your country, visit: http://endometriosis.org/support/.
So with the words of Carol Pearson: “Let’s make knowledge about this condition our legacy”.