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.
If anything, it is endometriosis that may negatively impact a career. The notion that women who delay marriage and pregnancy are those most prone to developing endometriosis is an outdated one; the label, “career woman’s disease” does not seem to be accurate. In fact, this label is fraught with stereotype, as studies have shown that women from lower socioeconomic backgrounds are often first thought to be suffering from the effects of a sexually transmitted disease—in reality, they, too, are suffering from endometriosis in many cases, right along with their upper middle class sisters.
All this begs for a special sensitivity when dealing with the endometriosis patient, and the emphasis on empathy is particularly important, as a study published in 2006 in the Journal of Psychosomatic Research found that patients with endometriosis were characterized by a higher level of emotional suppression compared with healthy controls. So, it is not surprising that a study published in 2008 in the European Journal of Obstetrics & Gynecology and Reproductive Biology did not show any differences in levels of anxiety/depression between endometriosis patients with pain and pain-free patients. This would otherwise be surprising, as anxiety and depression are known to be common emotional responses to endometriosis, and chronic pain in general.
The chronic pain of endometriosis is a major cause of suffering. It is not confined to “career women.” It is hiding in plain sight, emotionally and anatomically speaking, which in itself makes the pain even more painful to those who carry the diagnosis, and those considering the diagnosis.