SOCIAL IMPACT OF ENDOMETRIOSIS

In some cases the disease can have devastating effects; rendering a woman or adolescent unable to care for herself or her family, attend school or social functions, maintain her career or personal obligations. Endometriosis affects not only the patient but can impact everyone around her.
This is a typical comment: “a woman with endometriosis often feels her life is a battleground: she must fight with pain simply to meet her obligations each day, fight to maintain her dignity in the work place despite numerous absences and sick leaves, constantly fight with physicians who are uninformed, etc.”
Endometriosis is an unsolved problem and women today are still being misdiagnosed and suffering from horrible and ineffective treatments.
Most of the patients experience pain and/or either infertility or the threat of infertility. In some cases, even though women suffering from endometriosis are not trying to get pregnant, they feel a great fear and sadness that they will never be able to conceive.
Endometriosis is a chronic disease that patients deal with every day, it is not just a one time pain. This is the backdrop of endometriosis that patients live with.
Many patients suffering from endometriosis feel that their medical and emotional support needs are not being adequately addressed. They seek support in other women with endometriosis, spouses or partners, friends or extended family, and feel that health care providers are the least supportive.
This disease often goes undiagnosed. Usually, the biggest problem is getting endometriosis diagnosed in the first place. In fact studies have shown that the average delay in actual diagnosis is upwards of 9 years.
During that time, patients must be forced to “doctor shop” to find a physician who will take their symptoms seriously; are referred to psychiatrists by some physicians claiming that the pain is “all in their head”; are accused of “drug seeking” are told that they are “too old” or “too young” to have the disease or are subjected to other invalidated claims like “you had a baby, you can’t have endo”. Patients suffer from luck of social support from friends and family, and many other injustices.
Even once diagnosed through surgery, many are still not offered proper treatment or support. Some are surgically diagnosed but disease is left intact; others are surgically diagnosed and treated, but all disease is not removed. Still others are placed on medical therapy or told to “get pregnant” following surgery. Neither is curative, and certainly, “prescribed pregnancy” is not an effective means of managing endometriosis, nor does it help a patient suffering from endometriosis-related infertility. Hysterectomies are still widely performed; these are not always helpful for women with endometriosis outside their reproductive organs.
Patients want health care providers to listen to them, believe them, be knowledgeable about endometriosis, provide information, not have a condescending attitude, and to recognize that each woman is an individual. These themes are also reflected in this advice to health care professionals:
• listen
• believe
• educate yourselve about endometriosis