Endometriosis slowly emerges as a debilitating Disease for Women
Written by Cleophas Mutinda, November, 2011
Imagine a pain in your abdomen so excruciating that you are unable to get out of bed for several days every month. That is horrible enough, but when it continues 12 times a year for more than 27 years, majority of people would agree it is cruel.
Most women with endometriosis will recognise this shocking scenario as not imaginary, but very real. They know the misery of pelvic pain and have poignant stories of how endometriosis has devastated their lives with terrible suffering. Many women feel angry or despondent about being robbed off a normal life during teenage, adulthood and even sometime a ruined motherhood.
Endometriosis is a gynaecological condition, which occurs when, cells like the ones (endometrial cells) lining inside of the uterus (womb) grow outside, usually on the surfaces of organs in pelvic and abdominal areas. It can be found within the peritoneal cavity, on the ovaries and the bowels or bladder. In extremely rare cases, endometriosis can be found in lungs or other parts of the body. Endometriosis can affect any menstruating woman, from time of her first period to menopause, regardless of race, ethnicity or socio-economic status. Endometriosis rarely persists after menopause. The disorder, for which there is no absolute cure, affects over 70 million women and girls worldwide. Often stigmatized as simply “painful periods,” Endometriosis is a puzzling and widely misunderstood illness.
It is not known exactly what causes endometriosis. But over the years several theories have been advanced to explain the probable cause of the disease although none can fully explain the various clinical manifestations of the disease. A theory proposed by John Sampson in the 1920s, suggests that endometriosis may result from something called “retrograde menstrual flow”, in which some of the tissue that a woman sheds during her period flows back through the tubes and grows in the pelvic cavity. While studies show that retrograde menstrual flow is a universal phenomenon among women of reproductive age, the theory fall short of explaining why the tissues survive in some women, but fail in others. Another theory proposed by Iwanoff in 1898, claims that, the transformation of what we call coelomic epithelium into endometrial-like tissue may be a cause of endometriosis. This theory has been supported by experimental data. The induction theory, proposes that an endogenous factor can induce peritoneal cells to develop into endometrial tissue. This theory has been supported by experiments in rabbits.
Lymphatic or vascular hypothesis suggests that endometrial fragments may be transported through blood vessels or the lymphatic system to other parts of the body. This theory speculates how endometriosis ends up in distant sites, such as the lung, brain, or the skin. A genetic linkage has been adduced which claims that, this disease could be inherited, or result from genetic errors, making some women more prone to develop the condition than others.
Studies show that the risk of endometriosis is seven times greater if the disease has affected a first-degree relative. This theory has been supported by experiments in mouse model but has not been verified either in women. Immunological etiology (cause) has also been conjured since studies report that many women with endometriosis exhibit immunological abnormalities. It is speculated that the immune system may fail to clear the menstrual debris in the pelvic cavity, allowing the endometrial cells to implant and develop into endometriosis.
Also most scientists agree that endometriosis is exacerbated by oestrogen; a hormone involved in the thickening of the endometrium and appears to promote the growth of disease implants. Some studies have pointed out environmental factors like toxins may contribute to the development of endometriosis, though this theory has not been confirmed and remains controversial.
The most common symptoms of endometriosis are abdominal pain and infertility. Some studies have reported that endometriosis may occur in 30%-40% of women with infertility and the incidence of endometriosis in women with pelvic pain may be higher than 50%.
Endometriosis associated pain may include but not limited to extremely painful (disabling) menstrual cramps, chronic pelvic pain (which includes lower back pain and pelvic pain), pain during or after sex, painful bowel movements or painful urination during menstrual periods, heavy menstrual periods and bleeding between periods. The amount of pain a women feels is sometimes not linked to degree of endometriosis. Some women have no pain even though their disease is extensive, while others have severe chronic pelvic pain even though they have only few affected areas.
The relation between endometriosis and pain is still shrouded in the mist of intricate puzzle and ignorance. Many women with endometriosis feel pain during their periods. Normally, a woman’s menstrual cycle involves her endometrial tissue to build up, breaks down into blood and tissue debris, and is shed as her menstrual flow or period. This cycle of growth and shedding happens every month under normal condition. Endometriosis grows outside the uterus and also goes through a similar cycle, build-up, breakdown and bleed every month. The problem is the tissue is in the wrong place and can’t leave the body the way a woman’s period normally does. Studies show that as part of this process, endometriosis may spur the production of substances that may irritate the nearby tissue, as well as provoke the release of chemicals that cause or mediate pain. Over time, endometriosis areas can grow and become nodules or bumps on the surface of pelvic organs, or become cysts (fluid-filled sacs) in the ovaries and may cause the organs in the pelvic area to adhere together.
Endometriosis is more than just simple “killer” cramps. Women and girls around the world continue to suffer in silence with a disease that can be potentially devastating to every aspect of their lives. It can be so painful as to render a woman or teenager unable to care for herself or her family, attend work, school, or social functions, or go about her normal routine. Endometriosis has a negative impact on the individual quality of life, affecting both physical and emotional well-being. A study by the American Endometriosis Association, demonstrated that 81% of the endometriosis patients in USA were unable to work, including household chores, because of pelvic pain. Approximately 27% were incapacitated for 3 or more days and 87% complained of fatigue or low energy. These figures are indicators of enormous suffering, in addition to the healthcare costs incurred. The need to develop intervention strategies is eminent, a published poll reveals women have to wait an average of 11.7 years in US and 8 years in UK to get a correct diagnosis after the initial onset of symptoms and a patient will seek the counsel of five or more physicians before her pain is adequately addressed and diagnosed. Once diagnosed, it is not unusual for a patient to undergo repeat surgeries and embark on many different medical therapies in an attempt to treat her symptoms. Endometriosis is a bit puzzling. We do not know why it causes such extreme symptoms in some women, while less in others. The treatment options can sometimes be unsuccessful. Sadly, endometriosis is associated with menstruation, sex, infertility, and pain (taboos in many societies), thus it is a disease that is not well known, understood, or accepted in the general public. This is frustrating for those who suffer from endometriosis, and for those who care for someone with the disease.
There is no non-invasive test to diagnose endometriosis. In fact, the only gold standard diagnosis of endometriosis is a surgical procedure known as laparoscopy and confirm histologically by taking a biopsy of the suspicious tissue.
However, this is an expensive, minimally invasive procedure. Furthermore, a specialised surgeon is needed for adequate assessment of the pelvis, for recognition of the various types and appearances of the disease. If the patients decline surgery, this makes diagnosis a challenge, and therefore an experienced gynaecologist should be able to recognise symptoms suggestive of endometriosis. The fact that there is no non-invasive diagnostic test for endometriosis is frustrating for clinicians as well as for women with the disease and underscores the need for search of better diagnostic tools.
Since the cause of endometriosis remains unknown, a treatment that fully cures the disease is yet to be developed. Choosing a holistic, treatment option comes down to the individual woman’s needs, depending on symptoms, age, and reproductive desires.
Pain is the most common symptom in many women with endometriosis, mainly managed by painkillers, which may vary from simple analgesics to non-steroidal anti-inflammatory drugs. Most researchers agree that endometriosis is exacerbated by oestrogen. Subsequently, hormonal treatments for endometriosis attempt to reverse oestrogen production in a woman’s body and thereby alleviate symptoms. However, hormonal therapies have varying degrees of side effects, and unfortunately, whatever pain relief is achieved tends to be only temporary for many women. Most gynaecologists agree that laparoscopic surgery is the only way to diagnose and treat endometriosis. Laparoscopy involves a small cut or incision in the abdomen, inflating the abdomen with harmless gas, and then inserts a viewing instrument with help of light (Laparoscope) into the abdomen. The success of surgery depends largely on the skills of the surgeon and the thoroughness of the surgery. The aim is to remove all endometriosis lesions, cysts, and adhesions. Today, most endometriosis surgery is being done through the laparoscopy, although a full abdominal incision called a laparotomy may still be required in rare cases for extensive disease or bowel resections.
Although the prevalence of endometriosis is well documented in women living in the developed world, studies among African women are still limited. The current myth is that endometriosis rarely affects women of African origin. However, among African-American women in the USA, studies have shown endometriosis is one of the common indications for major gynaecological surgery and hysterectomy, and is associated with a high hospital costs. Although genetically, African-American and African women from the African continent are not necessarily identical given the known genetic admixture among the African-American population. Lack of awareness of endometriosis as a potentially disabling disease and poor access to state-of art diagnostic and therapeutic facilities has contributed to the meagre data on prevalence of the disease in the African population. There is need to initiate awareness campaign of endometriosis to reach all women in Africa. Also to highlight the general lack of information, facilitate endometriosis research efforts and draw attention to the impact and implications of the disease to healthcare systems in our country and the continent in general.
The writer is a Senior Scientist with special interest in endometriosis and ovarian cancer research