The definition of endometriosis, as given by the Center for Endometriosis Care, is:
“To begin, endometriosis is much more than simple, so-called “killer cramps” as it is often mistakenly labeled, with symptoms routinely occurring apart from menses at any time of the cycle and, in many instances, becoming chronic in nature.
Moreover, endometriosis is NOT just ‘painful periods’ – nor is it simply ‘bits of rogue endometrium implanted as a result of backflow menstruation’ as many articles and organizations incorrectly describe. Normal endometrium (the lining of the womb which breaks down and is shed during menstruation) is profoundly, histologically different from the functional glands and stroma that comprise endometriosis. The tissue does somewhat resemble – but is not the same as – ‘normal’ endometrium.
Characterized as the presence of endometrial-like tissue found in extrauterine sites, the aberrant processes involved in endometriosis give rise to pain, inflammation, development of endometriomas (“chocolate cysts”), fibrosis, formation of adhesions (fibrous bands of dense tissue), organ dysfunction and much more. Alterations in certain biological processes of the endocrine and immune systems have been observed with the disease, and endometriosis is embodied by a complexity of multiple immunologic abnormalities, endocrine alterations and unusual expression of adhesion molecules.”
Doctors and researchers are not exactly sure how the endometrial-like tissue comes to be present in other regions of the body, but studies have shown it to be present in human fetuses, young females prior to menstruation, and even in some men. New studies suggest that endometriosis is congenital, and may be a type of auto-immune disorder.
The only way to diagnose endometriosis currently is through laparoscopic surgery.
Due in part to a limited amount of research on the subject, endometriosis is poorly understood and doesn’t seem to follow any particular pattern as far as disease progression and symptoms. A woman who is covered with adhesions may not experience pain, yet a woman with very few visible adhesions may experience debilitating pain. A woman may experience no symptoms aside from the inability to conceive, and when her infertility is investigated by laparoscopy, made be advised that she has progressed disease.
There is no cure.
Sadly, there is no cure for endometriosis. No medication can get rid of endometriosis, although some have been shown to shrink existing lesions/adhesions. The only way to get rid of endometriosis is through surgery, specifically by laparoscopic excision (the cutting away of endometrial lesions and adhesions, either by laser or manually with a type of medical “scissors”) by a skilled surgeon. Hysterectomy, although it may be necessary in some cases, is NOT a cure for endometriosis, and more conservative treatments should be considered prior to this highly invasive procedure.
Endometriosis affects nearly 176 million women worldwide or at least 1 in 10 girls and women, and is the leading cause of female infertility. Sadly, many women suffer for a long time prior to being diagnosed. The current estimate for the length of time from onset to diagnosis is 11 years. The average age of diagnosis is 28 years of age.
Many women have been told that painful periods are “a normal part of being a woman”. Painful, heavy, long-lasting and debilitating periods that interrupt a woman’s life to the degree of missing school and/or work are NOT normal.
Even more disturbingly, some women are told that the pain is “not real” or “in your head”, because endometriosis does not typically show up in ultrasounds or other medical imaging (CT scan, MRI, x-rays, etc.) and their doctor cannot see anything wrong. Some women have had upwards of 10 laparoscopies performed by gynecologists not specifically trained in treating endometriosis. They may experience short-term relief, but since not all of the endometrial lesions are removed, it is likely to reoccur.
Gynecologists with significant training and experience performing laparoscopy, and specifically, removing endometrial implants via excision have much lower rates of recurrence in their patients.
If you think you may have endometriosis, talk to your doctor or gynecologist. Be your own advocate, and find a gynecologist that specializes in the treatment and laparoscopic excision of endometriosis.