Is It Finally Time To Take Endometriosis Seriously?
Ten years ago, I sat in my primary care physician’s office and I listened to her as she told me that the symptoms commonly associated with endometriosis were actually a result of depression. “If you take a little Prozac this would all go away.” She explained with confidence. I promptly switched physicians because I was a lucky one. I had already received a tenuous diagnosis of endometriosis from a physician in Edinburgh, Scotland where I was living at the time and pursuing a joint doctorate in Politics and African Studies. I say “tenuous diagnosis” because a definitive diagnosis of the disease is only made through surgery. Anyone that lives with the disease knows that there are a myriad of symptoms associated with endometriosis but it was the pain—the stabbing, throbbing, and uncontrollable pelvic pain that brought me into the hospital in Edinburgh. That is where I first heard and received the spelling of this disease—the unknowing Kudzu of reproductive disorders that was invading my internal organs. But, why do I call myself a lucky one? Well, I received a prompt diagnosis. According to a 2010 article in the journal, Fertility and Sterility, women with endometriosis have a diagnostic delay of 8 years due to symptomatic overlap with similar conditions such as irritable bowel syndrome and pelvic inflammatory disease. Likewise, some women never receive a diagnosis. However, there may be more to the story than complicated symptomatology. First, let’s delve into a concise overview of endometriosis.
What Is Endometriosis?
Endometriosis is a chronic inflammatory disease characterized by the existence of endometrial glands and tissue outside the uterine cavity. It is an estrogen-dependent condition that causes bleeding, inflammation, fibrosis, and adhesions to internal organs. Endometriosis is classified into three categories. The three forms of endometriosis are superficial peritoneal implants coined “powder burns” for their appearance, endometrioma ovarian cysts (also known as chocolate cysts because of their thick dark blood composition), and deep nodules that penetrate the walls of adjacent organs. Endometriosis is most commonly located on the ovaries, the pelvic peritoneum, subperitoneal pelvic space, gastrointestinal tract, uterus and uterosacral ligaments, pouch of Douglas, fallopian tubes, vagina, bladder, and rectosigmoid colon. The symptomatology of endometriosis is complex, non-universal, and non-patterned. However, the most common symptoms of endometriosis are dysmenorrhea (extremely painful menstruation), dyspareunia (pain before, during, or after intercourse), chronic pelvic pain, infertility, abdominal pain, excessive bleeding, pain with urination, pain with bowel movements, fatigue, bloating, nausea, diarrhea, constipation, and headaches. The level of pain does not always correspond to the severity and pervasiveness of the disease and the intensity of symptoms may range from mild to severe among women and even within one woman the symptoms can range with each flare.
What Causes Endometriosis?
Currently, there is no known definitive cause of endometriosis only theories as to why women develop the disease. However, the most common hypothesis put forth by the medical community is what is called retrograde menstruation where endometrial fragments, propelled through the fallopian tubes, implant, grow, and invade pelvic organs. The abnormality of the regurgitated endometrium occurs possibly as a result of early age menarche, lengthy menstrual flows, and/or changes to the molecular make-up of cell implantation both genetic and environmental. It is estimated that hereditability of endometriosis is 51%. There are other interesting hypotheses that have been proposed besides retrograde menstruation including analyzing the role of estrogen, inflammation, an increase in pain perception, and a malfunction of the immune system. Since estrogen is the main hormone implicated in the development and progression of the disease, researchers have been investigating alterations of estrogen signaling that have been correlated with endometriosis. Likewise, widespread inflammation is present in endometriosis patients revealing an overproduction of prostaglandins and cytokines. Prostaglandins are the most functionally diverse 20-carbon compounds derived from fatty acids called arachidonic acid. They play a major and varied role in inflammation signaling through stimulating pain, fever, vasodilation, and enhancing histamine action. Cytokines are a class of chemicals that regulate both inflammation and immunity. When functioning normally, they usually act at short-range either on neighboring cells or on the cell that secretes them. Related to the inflammation theory, some women with endometriosis suffer hyperalgesia, which is the experience of debilitating pain although a non-painful stimulus was never applied. Those of you who also suffer from chronic pain understand this phenomenon well. Hyperalgesia is typically associated with neuropathic pain, usually related to nerve injury or inflammatory impetuses. Furthermore, the presence of endometriosis may be related to an increase in pain perception,due to abnormal alterations in nociceptive signaling with a greater intensity of neural signals ascending to the cerebral cortex. One last theory as to the cause of endometriosis and of particular research interest to me is that endometriosis is an autoimmune disease. Endometriosis satisfies the majority of the autoimmune disease classification criteria including polyclonal B cell activation (a single antigen is spotted by the immune system and attacked by multiple clones of the B cell), immunological defects in the function of T and B cells, increased apoptosis or programmed cell death (the normal death of cells that have completed their function), tissue damage, and the involvement of several organs. T and B lymphocytes and natural killer (NK) cells of the immune system appear to play an important role in the survival, implantation, and spread of endometrial cells onto internal organs. NK cells are large lymphocytes that attack and destroy bacteria, transplanted tissue cells, and cells of a person’s body that are either infected viruses or have turned cancerous. They are responsible for immune surveillance, which is the continual patrol of the body for pathogens and diseased host cells. Endometrial cells are often targets of NK cells. Women who exhibit endometriosis have reduced NK cell activity and this deficiency in immune surveillance may lead to the attachment, persistence, and progression of the disease. The high genetic component previously mentioned and an increased likelihood of comorbidities with other autoimmune disorders are further evidence that endometriosis is an autoimmune related disorder. However, researchers still do not have a clear and complete picture of how immunological abnormalities trigger the development of the disease.
How Is Endometriosis Treated?
Since obtaining a diagnosis requires surgery, with the exception of vaginal endometriosis, treatment by way of removing endometriosis usually occurs at the same time. However, the therapeutic effects of surgery are short-lived for most women because surgery does not target the unknown mechanisms by which endometriosis exists. Therefore, the reoccurrence of symptoms and lesions are common with an estimated 40 to 50 percent reoccurrence at the 5 year follow-up if postoperative treatment is not used in conjunction. It is at that point, medical professionals attempt to inhibit ovulation, stop menstruation, and regulate the hormonal influence of the disease typically with the use of contraceptives. However, it is extremely important to note that this type of treatment only alleviates the symptoms of endometriosis. Lesions continue to exist with any drug, at any dose, for any period of use. Thus, treatment is long-term. Even with the aforementioned medical interventions, symptoms often persist. Furthermore, many therapy treatments have adverse side-effects such as weight gain, cholesterol level increase, reduction in calcium and bone loss, and instability in mood. With the use of oral contraceptives and intrauterine devices (IUD), breakthrough bleeding still occurs and with bleeding comes pain. Other treatment options that have been used by women in combination with surgery and drug therapy are acupuncture, biofeedback, pelvic floor physical therapy, mindfulness meditation, and lifestyle changes. For some women, a hysterectomy is advised with hormonal replacement therapy if both ovaries are removed. Additionally, women with endometriosis often experience infertility and as a result undergo surgery to remove lesions, attempt IVF treatment, or intrauterine insemination (IUI). The rate of a successful pregnancy is significantly lower for patients with endometriosis than women with other infertility related issues.
Is There More to the Picture?
In 2008, in ten European countries, the average total cost per year per patient with endometriosis was almost €10,000. In the USA, women with endometriosis have medical costs that are 63% higher per month than women without the disease. In Canada, in 2009, the estimated annual cost of endometriosis was $5,200 per patient. Yet, given the financial burden of the disease, the loss of work and wages for women, the psychological ramifications of possible infertility, the debilitating symptoms of the disorder, the invasive treatments, and the etiology of endometriosis that involves several internal organs, women who suffer from endometriosis still experience delays in diagnosis and a deficit of research dollars being spent on causation and cure. Why? I argue that women with endometriosis suffer from another disease: the disease of sexism. I believe that women burdened by the disease of endometriosis are also afflicted by societal and medical ingrained sexism. Let’s first consider delays in diagnosis. True, endometriosis mimics the symptoms of other diseases but there is something else that prevents women from receiving a timely diagnosis and that is both the expectation that menstruation is painful and the period is simply a rite of passage. Women are merely the unlucky recipients of painful periods and pain is a part of womanhood. Enduring cramping, back and leg aches, and fatigue, once a month while going to work, school, and the gym is normal. Women who disengage from these activities because of painful periods are seen as weak. Calling out of work to your boss because you are experiencing debilitating symptoms as a result of menstruation is not viewed as a legitimate excuse. Indeed, the so-called, “being on the rag” is that space where all women, once a month, become the butt of a joke. So, what happens to a woman who has a disease where the cramping turns to stabbing, the bleeding is incessant, and the fatigue feels like she hasn’t slept in years? It is not a great leap to think that she will be dismissed when she pursues answers to her pain. She may even self-dismiss her pain as a serious medical problem. I always say that I was 22 years old when I first began exhibiting symptoms of the disease. However, that was the age that endometriosis brought me to the emergency room but I had been presenting symptoms since I was 12 years old. Women with endometriosis are then placed in a situation where evidence of the disease during a surgical procedure is a relief. Coming out of anesthesia, the first question from my lips was: “did you find something?” I needed that validation to combat all the disbelief that was surrounding this idea that the excruciating pain I was experiencing was just the universal monthly menstrual pain that all women experience and anything outside that realm was a psychological manifestation.
Endometriosis has been recognized as a pathological phenomenon since 1918. More than 5 million women in the United States alone have the disease and it is one of the most common health problems for women. Yet, there is still no known cause or direct prevention for the disease and limited treatment options. True, the disease is not life-threatening but many women who have the disease are so burdened by endometriosis symptoms they have no life at all. The U.S. Department of Health and Human Services’ National Institute of Health published a table on March 7, 2014 of past and projected annual support based on grants, contracts, and other funding of research for diseases. In 2013, 7 million dollars was spent on endometriosis research. Projected spending on endometriosis research for 2014 is $7 million dollars. It is estimated that 7 million dollars will be spent on endometriosis research in 2015. For hay fever, in 2013, $9 million research dollars was spent. Yes, a disease in which cells invade and over-run women’s reproductive organs receives less financial attention than hay fever. What is more is that the common treatment of endometriosis, contraceptives, came under attack politically. As many can recall from the 2012 U.S. presidential primary, Rick Santorum happily discussed “the dangers of contraception” and the decline of the “American Family”. Quickly, the use of birth control was up for debate completely ignoring the medical and treatment values of contraceptives.
As a woman who has dealt with the pain and frustration of the disease of endometriosis for 10 years, I can’t help but think: “are we there yet”? Can we finally take this disease seriously?Michel Foucault proposed the notion of the “limit attitude,” where the subject is found entangled in relationships that intersect in commonalities and sometimes oppose each other. These identities are sites of power that constrict and expand according to the bi-fold occurrence of constantly being a subject and being subjected to power relations and institutions. The subject is hinged at the point where the body internalizes the role of social institutions. Our body, our diagnosis, our treatments do not just exist in a vacuum but are directly impacted by the political and cultural institutions that interact and shape the body. To take a reproductive disease seriously means we have to engage and acknowledge the “power sites”. The disease of endometriosis is one that requires us to look directly at the role of sexism in society because it hits on issues of reproduction, menstruation, female sexual dysfunction, and infertility all of which have been subjected to the power of sexism. The question of readiness and willingness to take endometriosis seriously is not just a medical or biological one but it is also deeply rooted in the political.
Ballard K., Lane H., Hudelist G., Banerjee S.,Wright J. Can Specific Pain Symptoms Help in the Diagnosis of Endometriosis? A Cohort Study of Women with Chronic Pelvic Pain. Fertility and Sterility 2010; 94,20-27.
Vercellini P., Viganò P., Somigliana E., Fedele L. Endometriosis: Pathogenesis and Treatment. Nature Reviews 2014; 10, 261-275.
Kokcu A., Possible Effects of Endometriosis-Related Immune Events on Reproductive Function. Arch Gynecol Obstet 2013; 287, 1225-1233.
Vercellini P., Viganò P., Somigliana E., Fedele L. Endometriosis: Pathogenesis and Treatment. Nature Reviews 2014; 10, 261-275.
Categorical NIH Spending For Diseases: