Endometriosis is defined as the growth, adhesion and progression of endometrial glands and supporting tissue outside of the uterine cavity, with cellular activity evident in lesions, nodules, cysts or endometriomas. Although it typically appears benign on microscopic examination, endometriosis has been likened to a malignant tumor since the lesions grow, infiltrate and adhere to adjacent tissues and interfere with normal physiologic processes. Ectopic endometriotic growths respond to cyclic changes of estrogen and proliferate and shed in a manner similar to the endometrium confined within the uterus, cycling right along with the uterine tissue. This cyclic ectopic activity results in internal bleeding, formation of scar tissue, inflammation and, of course, debilitating chronic pain.
Now, with all the medical science packed into the sentences you just read, why has society turned endometriosis into an almost psychiatric affliction of women? It could be that those who study this ailment fail to appreciate that unfortunately long interval between the onset of symptoms and the formulation of a diagnosis.
For most women living with endometriosis, the road to diagnosis and treatment can be long, painful and frustrating. The mean time from onset of symptoms to diagnosis for women with endometriosis in the United States is over 11 years. Women may delay seeking medical attention in the mistaken belief that painful symptoms are part of a “normal” menstruation, especially if there is a family history of painful menses, or fears of appearing unable to cope with “female problems.” Also, medical professionals who lack knowledge about the severity of pain that women with endometriosis often suffer may trivialize symptoms, attribute pain to being a normal part of menstruation or dismiss symptoms as being imaginary. These failures and misperceptions often delay referrals to gynecologists or other health professionals specializing in chronic pain management. And so follow increased frustration, depression and anger as these women experience the lack of understanding and empathy they deserve. During this time, patients must live with chronic pain that negatively affects their careers, sexual relationships and feelings of self-worth.