The only way to know for sure if Endometriosis is present is through surgical intervention, although symptoms may indicate that the patient has it.
From the Endo Research Center at http://www.endocenter.org/pdf/2007ScreeningEducationKit.pdf:
Endometriosis is a painful reproductive and immunological disease afflicting over 7 million women and teens in the United States alone (twice the number of Alzheimer's patients and seven times those with Parkinson's Disease), with an estimated 70 million more worldwide.
The disease is a leading cause of female infertility, chronic pelvic pain and gynecologic surgery, and accounts for more than 120,000 of the 500,000 hysterectomies performed annually. It is more prevalent than breast cancer,3 yet continues to be treated as an insignificant, obscure ailment. Recent studies have also shown an elevated risk of certain cancers in women with Endometriosis.
There is no cure for Endometriosis, but there are several methods of treatment, which may alleviate some of the pain and symptoms associated with it. Following is an overview of Endometriosis, possible symptoms that might lead you to suspect you may be suffering from the disease and common treatment measures.
What is Endometriosis?
Endometriosis is a disease in which tissue like the endometrium (the tissue that lines the inside of the uterus which builds up and is shed each month during menstruation) is found outside the uterus, in other areas of the body. These implants still respond to hormonal commands each month, and break down and bleed. However, unlike the lining of the uterus, the tissue has no way of leaving the body. The result is internal bleeding, degeneration of blood and tissue shed from the growths, inflammation of the surrounding areas, and formation of scar tissue. In addition, depending on the location of the growths, interference with bowel, bladder, intestines and/or other areas of the pelvic cavity can occur. While uncommon, Endometriosis has also been found lodged in the skin, as "nodules" that present themselves as "blue bumps", in the arm, leg, and even the brain.
There is no absolute cure for Endometriosis, but some treatments can help.
Endometriosis lesions can present themselves in almost any color, shape, size and location. This includes clear, microscopic papules that can lodge themselves on the underside of organs or beneath the skin. Unfortunately, physicians who are less trained to recognize all manifestations often miss diseased areas, instead searching for visible, common "powder-burn" type lesions on the reproductive organs. In reality, the lesions can be black, red, blue, brown, clear, and raspberry colored, and microscopic in size. The lesions can be spread throughout the entire abdominal region, bowels, bladder, and other areas, and may not be visible without proper magnifying equipment.
Is Endometriosis malignant?
The disease itself is classified as benign. However, recent studies indicate that women with Endometriosis may have a slightly greater risk of developing cancer of the breast or ovaries and a greater risk of cancers of the blood and lymph systems, including non-Hodgkin’s lymphoma and melanomas. Researchers caution that the cause of the relationship is unclear.
In the study of 20,686 Swedish women hospitalized for Endometriosis, the women had a 20% greater risk of developing cancer overall, particularly of the breast, ovaries and the blood and lymph cells, during an 11-year period. The women actually had a lower risk of cancer of the cervix.
Endometriosis has also been linked to a lack of physical activity and to exposure to the environmental contaminant, dioxin. These two factors might be to blame for the cancer risk, rather than Endometriosis. Findings of one survey conducted on over 4,000 Endometriosis patients in the United States and Canada indicated possible links to other serious medical conditions, including a 9.8% incidence of melanoma, compared with 0.01% in the general population, a 26.9% incidence of breast cancer, compared with 0.1% in the general population; and an 8.5% incidence of ovarian cancer, compared with 0.04% in the general population. Women with Endometriosis who participated in the survey also had a greater incidence of autoimmune conditions and Meniere's disease.
What causes Endometriosis?
There are several theories, none of which have been proven. Following is just a sample of common ones.
Dr. John Sampson's theory of retrograde menstruation, which he formulated in 1921: Dr. Sampson contended "during menstruation, a certain amount of menstrual fluid is regurgitated, or forced backward, from the uterus through the fallopian tubes and showered upon the pelvic organs and pelvic lining". There has been evidence to support Dr. Sampson's theory; however, studies have shown that most women experience retrograde menstruation and have evidence of a "tipped" uterus, not all women will develop the disease. His theory also fails to explain the presence of Endometriosis in such remote areas as the lungs, skin, lymph nodes, breasts, and other areas.
Transplantation theory: Endometriosis is spread through the lymphatic and circulatory systems. This would explain Endometriosis in most sites.
Another transplantation theory is Iatrogenic Transplantation-or "doctor caused". This is the accidental transference of the Endometriosis tissue from one site to another during surgery. However. this is highly uncommon today due to advanced surgical management. It also does not explain the presence of the disease to begin with.
Coelomic Metaplasia: Drs. Ivanoff and Meyer's theory that "certain cells, when stimulated, can transform themselves into a different kind of cell". This would explain the presence of the disease in absence of menstruation, and further, the presence of the disease on the bladders of men who have undergone prostate removal and were treated with estrogens.
Heredity: a very popular theory that "women with relatives who have the disease may be genetically predisposed to developing it themselves." This theory was suggested as early as 1943, and research is currently underway by Oxegene researchers at the University of Oxford.10 Recent research released in March 2002 shows that Endometriosis may have even deeper genetic roots than previously thought. In studies presented in the March issue of Human Reproduction, a group of Icelandic researchers found that "having a sister or mother who had Endometriosis increases your risk by fivefold. In addition, even having a second, third or fourth cousin with this disorder means your risk is greater than 50%."
Immunology: according to Dr. Paul Dmowski of The Institute for the Study and Treatment of Endometriosis in IL, "two different arms of the immune system may be involved in the development of Endometriosis. Cell-mediated immunity, in which specific immune cells fight disease; and humoral immunity, in which antibodies are formed to attack antigens." Studies by Dr. Dmowski and others suggest that migrating Endometriosis tissue affects women who have "deficient cell mediated immunity." In women without the deficiency, the transplanted cells are destroyed.
Genetic makeup: A team of researchers at University of Texas Southwestern may have found another genetic link to the disease. According to an article published in earlier issue of The Journal of Clinical Endocrinology & Metabolism, ERC Advisory Board Member Dr. Serdar E. Bulun (currently with the University of Chicago) and his team found that some women’s genetic makeup determines their predisposition for contracting the disease. An unusual estrogen-synthesizing enzyme called Aromatase was expressed in the Endometrial tissue of women with the disease, allowing the wayward tissues to implant themselves to a woman’s reproductive and nearby organs. In a further twist, the researchers uncovered that as this enzyme is induced by large amounts of prostaglandins in the area, the tissue makes its own estrogen, thus promoting its own further growth.
On the basis of these findings, the team conducted preliminary research on the use of Aromatase inhibitors as a treatment for Endometriosis in post-hysterectomy patient. According to the study, "the response to treatment in this case was strikingly successful, exemplified by the rapid disappearance of pelvic pain and near-complete eradication of a 30-mm vaginal Endometriotic implant."
There are many other theories being investigated. Experts such as Dr. Robert Albee of the Center for Endometriosis Care in Atlanta believe that it may actually be "a combination of several factors."
What are some symptoms of Endometriosis?
The amount of pain or infertility rates associated with the disease is not related to the extent or size of the implants. Some women with Endometriosis have no symptoms, others have debilitating pain and even infertility. Some signs that may lead you to suspect Endometriosis include - but are by no means limited to - any of the following:
Reproductive Area Endometriosis:
chronic or intermittent pelvic pain
dysmenorrhea (painful menstruation is not normal)
infertility
miscarriage(s)
ectopic (tubal) pregnancy
Cul-de-Sac ("Pouch of Douglas") Endometriosis:
The Cul-de-sac is one of the most common (top 5) areas for Endometriosis implants. As outlined in the "GI symptoms" section of this Fact Sheet, Endometriotic implants have an "irritating focus." The Cul-de-sac is surrounded by the posterior wall of the uterus, the supravaginal cervix, the upper part of the vagina, the rectum and the sacrum, the small intestine and the sacrolateral ligaments. Hence, this "irritating focus" of implants can aggravate all the areas named, including the bowel. This can account for IBS-type symptoms when there are no implants actually present on the bowels. The same is true for disease located on the appendix. Another common symptom is dyspareunia (pain associated with sexual intercourse).
Uterosacral/Presacral Nerve Endometriosis:
Backache
leg pain
painful intercourse
Gastrointestinal (rectosigmoid colon, rectovaginal septum, small bowel, rectum, cecum, large bowel, appendix, distal ileum, gallbladder, intestinal tract) Endometriosis:
According to Dr. David Redwine, renowned Endometriosis specialist who heads up the St. Charles Endometriosis Treatment Program, "irritable bowel syndrome" is common in Endometriosis patients. In a Program Newsletter, it was stated "…we agree, but not because Endometriosis patients are "high strung" or "just crazy," but because Endometriosis is an irritating focus which causes bowel symptoms. Constipation, diarrhea, and cramping are non-specific symptoms (can be caused by a number of things in addition to Endometriosis) and improve in a high number of patients when Endometriosis is removed. Pelvic pain, painful sex, and rectal pain are more specific and are improved at an even higher rate."
Other GI tract symptoms include:
nausea
vomiting
abdominal cramping
diarrhea
rectal pain
constipation
painful bowel movements
blood in stool
rectal bleeding
sharp gas pains
bloating
tailbone pain
Urinary Tract (bladder, kidneys, ureters, and urethra) Endometriosis:
blood in urine
tenderness around the kidneys
painful or burning urination
flank pain radiating toward the groin
urinary frequency, retention, or urgency
hypertension
Pleural (lung/diaphragmatic/chest cavity) Endometriosis:
coughing up of blood or bloody sputum, particularly coinciding with menses
accumulation of air or gas in the chest cavity
constricting chest pain and/or shoulder pain
shoulder pain associated with menses
shortness of breath
collection of blood and/or pulmonary nodule in chest cavity (revealed under testing)
deep chest pain
Sciatic Endometriosis:
pain in the leg and/or hip which radiates down the leg (this symptom is concurrent with that of inguinal Endometriosis (groin area) as well.
Skin Endometriosis:
painful nodules, often visible to the naked eye, at the skin's surface. Can bleed during menses and/or appear blue upon inspection.
Fatigue, chronic pain, allergies and other immune system-related problems are also commonly reported complaints of women who have Endometriosis.
It is quite possible to have some, all, or none of these symptoms with Endometriosis. Because Endometriosis symptoms are so inconsistent and non-specific, it can easily masquerade as several other conditions. These include: adenomyosis ("Endometriosis Interna"), appendicitis, ovarian cysts, bowel obstructions, colon cancer, diverticulitis, ectopic pregnancy, fibroid tumors, gonorrhea, inflammatory bowel disease, irritable bowel syndrome, ovarian cancer, and PID (pelvic inflammatory disease).
Often, younger women and teens who present to their healthcare providers with symptoms are dismissed and told they have PID or that they are too young to have Endometriosis. This is often not the case. Endometriosis has been found in autopsies of infants and in menopausal women; the disease knows no age boundaries.
How is it diagnosed?
The gold standard for a positive diagnosis of Endometriosis is via surgery, either a laparoscopy or the more invasive laparotomy.
Will diagnostic procedures show Endometriosis?
A sonogram might give indications to make a doctor suspect Endometriosis, such as cysts or fibroids. It can also be helpful in diagnosing ruptured Endometriomas or cysts. The disease itself, however, cannot be positively diagnosed with a sonogram, CT scan, MRI or other diagnostic procedure. The use of high-power color sonograms are currently being investigated, but their detection rates seem limited at this time to confirming recurrence of the disease in previously diagnosed patients.
How Can it be Managed?
The most effective thing an Endometriosis patient can do is to find a specialist who treats the disease, such as an experienced gynecologist with a history of treating Endometriosis patients or a reproductive Endocrinologist, especially if infertility is a concern. Form a partnership with this professional, in which you make informed decisions regarding your treatment plan together. Endometriosis is a serious disease, which requires serious treatment.
While the ERC does not endorse, screen or recommend any physicians, we can aid you in your search. For in-depth information on this topic, please see the EndoDocs Listserv at http://health.groups.yahoo.com/group/EndoDocs.
There are several methods of removing the disease during surgery, regardless of stage and location of implants. These include (but are not limited to) excision, ablation, cauterization, fulguration or vaporization of the lesions. Sometimes, when a surgeon feels uncomfortable attempting to remove the disease in any of the above manners due to the size and/or location of the implants, another surgeon may be called in to consult, or a second procedure may be scheduled at such time as the proper professional can operate. Examples of this are GI tract or bladder Endometriosis; sometimes these cases are referred to gastroenterologists or urogynecologists; however, there are gynecologic surgeons capable of performing such procedures themselves.
Hysterectomy: each individual considering a hysterectomy should fully educate herself. A hysterectomy is not a definitive cure for Endometriosis; though some women have experienced relief of painful symptoms post-hysterectomy. Certainly, each case of Endometriosis is different and each patient requires a different course of treatment. A hysterectomy is just one of the many surgical options that can be considered in your search for treatment. Research this option as thoroughly as possible and speak with others who have had the procedure. The decision is ultimately yours, and it is important that you feel completely comfortable in undergoing whichever method of treatment you choose.
Aromatase Inhibitors: according to ERC Advisory Board Member Dr. Serdar E. Bulun, Director of the Division of Reproductive Endocrinology in the Department of Obstetrics and Gynecology at the University of Illinois at Chicago, Endometriosis is one of the most important public health problems in the US. Indeed, researchers have estimated that menstrual pain is responsible for nearly 600 million lost work hours and a staggering $2 billion in lost productivity each year. Dr. Bulun's studies have shown that misplaced Endometrial tissues respond to ovarian hormones such as estrogen and go through a menstruation-like process (bleeding, shedding and inflammation) repetitiously in the abdomen of a woman. Estrogen is like fuel to fire for Endometriosis, thus current treatments have been designed to stop estrogen secretions from the ovaries of a woman (gonadotropin releasing hormone agonists). Estrogen, however is made not only in the ovaries but also in adipose tissue, and most importantly, within Endometriosis tissues. Thus, Endometriosis tissue acts in a devious manner to make its own estrogen through the abnormal expression of Aromatase enzyme in this tissue. This may explain the high numbers of treatment failures and early recurrences after conventional treatments of Endometriosis.
In mid 90s, new generation Aromatase inhibitors were introduced to successfully treat breast cancer, another estrogen dependent disease. Dr. Bulun was the first in the world to use an Aromatase inhibitor to successfully eradicate an unusually aggressive case of postmenopausal Endometriosis. His team also uses this medication on a compassionate basis to treat women with Endometriosis after failure to respond to conventional treatments, but the treatment is still in the clinical trial phase and is not readily available to the general public as yet. The treatment lasts 6 months. As in any estrogen-block type of treatment, bone loss is the most significant side effect. Dr. Bulun's team minimizes bone loss by adding back nonestrogenic and bone-protecting medications.
GnRH (gonadotropin-releasing hormone) agonists: these are drugs that are designed to suppress the Endometriosis implants in the following way: during the first phase of treatment, the drugs stimulate the ovaries to produce more estradiol (the most potent form of estrogen). In the second phase, after anywhere from approximately 7 to 21 days of constant stimulation, the drugs shut down the "messenger" hormones sent from the pituitary gland to the ovaries. The result is that the ovaries shut down, estradiol levels drop sharply and rapidly, and the patient ceases to ovulate or menstruate; a condition similar to that of menopause.
Some women experience positive results with GnRH treatments, others do not. As with any treatment, each case will vary. Though the medications can shrink the lesions of Endometriosis, they will not shrink adhesions or scar tissue, which often play a part in the symptomatic pain of the disease. Common side effects that have been reported by women undergoing treatment include hot flashes, headaches, insomnia, vaginal dryness, decreased libido, depression, mood swings, fatigue, acne, dizziness, nausea, short term memory loss, diarrhea, hair loss, anxiety, and bruising at injection site.
Again, each case is individual in nature and there is no way of knowing in advance how the drug might affect you personally. There are several different GnRHs that can be considered for treatment. These include:
Lupron Depot (Leuprolide Acetate) - administered by injection
Synarel (naferalin acetate) - administered as a nasal spray
Zoladex (goserelin acetate) - a subcutaneous implant placed into the abdominal wall
Suprefact (buserelin acetate) - administered as a nasal spray
Other Medications:
Danazol – a dated treatment for Endometriosis, this is a synthetic testosterone marketed under the names "Danocrine" or "Cyclomen." It is usually given in pill form. Danazol has recently been linked to ovarian cancer.
Contraceptives, such as, but not limited to:
Depo-Provera (medroxyprogesterone acetate) - injectible form of progestins. As of March 2005, Pfizer has been granted approval on a new pain-relieving compound for Endometriosis, the injectable drug Depo-subQ Provera 104, which contains the same active ingredient as the contraceptive Depo-Provera, but in a new formulation.
Provera (same as above; administered in pill form).
Any forms of oral contraceptives recommended by your doctor: popular ones include Alesse and Lo-Ovral, because of their low estrogen/high progesterone combination.
The newer extended-cycle pill, Seasonale, is also being used with success by some women and girls with the disease. Seasonale contains 84 days of active pills followed by 7 hormone-free days, allowing a woman to experience only four menstrual cycles per year, versus the normal number of 12.
Immune therapy: according to a monograph by Clare Conway of Stanford University, Wayne Konetzki, MD, a renowned allergist, states that Endometriosis is an allergic reaction to one's own hormones, either progesterone, estrogen or the leutinizing hormone. Dr. Konetzki tests his patients for sensitivity to each hormone and, if he detects an allergy, initiates a desensitization program. He exposes the patients to minute doses of the hormone by giving them tablets to dissolve daily under their tongues. By exposing patients to tiny amounts of the offending hormone, Konetzki aids the body in slowly building an immunity to it. Though evidence of the treatment's effectiveness is anecdotal to date, Konetzki says his patients' symptoms typically begin to lessen after three menstrual cycles, and pain may disappear entirely after a year.
Other patients have opted for less-traditional approaches to their treatment, such as alternative medicine, acupuncture, herbal therapy, massage techniques, and dietary measures. While not a cure for the disease, exercise (as indicated and advised under the guidance of a trained professional who is familiar with your condition), good nutrition, and adopting a generally healthy lifestyle may significantly improve symptoms.
Aren't hysterectomies or pregnancies the cure?
No. At this time, there is no definitive cure for Endometriosis. Hysterectomy may provide pain relief for many women; however, many women still have problems with Endometriosis that was left behind in the body. Additionally, HRT may induce post-hysterectomy raises some issues for some patients in which the disease was not completely removed. As for pregnancy, certainly many women with Endometriosis have certainly been able to get pregnant and carry to term, though approximately 30-40% of women with Endometriosis may experience problems with infertility. Some women who have achieved pregnancy reported short-term relief from monthly cramps during the pregnancy; others have had no relief at all. In many cases discussed, the Endometriosis returned "in full force" within a year.
Endometriosis is one of the most prevalent illnesses affecting society today. American businesses lose millions of dollars each year in lost productivity and work time because of the disease, and the cost of surgery required to diagnose Endometriosis in each patient adds greatly to the financial burden of both consumers and companies alike. However, disease awareness is growing, thanks to efforts of such foundations as the ERC.
Support is one of the biggest components for coping well with Endometriosis. Sharing experiences with others who understand in a supportive environment can be the key to finding effective ways to deal with the disease. The Endometriosis Research Center offers extensive community programs as part of their International mission for disease education, support, awareness and research facilitation. The ERC strongly advocates for early intervention, timely diagnosis and efficacy of treatment for Endometriosis. Through their efforts to raise public awareness in the medical and lay communities, the organization hopes to facilitate better support of patients, increase physician understanding of the disease and raise research funding, leading to more effective treatments and ultimately, a cure. Contact us to learn more.
If you or a loved one suffers from pelvic pain, listen to your body. Pain is never normal, and it is your body’s way of sending you the message that something is wrong. See your gynecologist and find out if Endometriosis is the cause of that message. If that doctor won’t take your pain seriously, find one that will.
Resources:
http://www.endocenter.org
http://groups.yahoo.com/group/erc
http://groups.yahoo.com/group/ERCGirlTalk
http://health.groups.yahoo.com/group/EndoDocs
http://health.groups.yahoo.com/group/ERCResearch
http://www.endometriosissurgeon.com
http://www.centerforendo.com
http://www.endoexcision.com
Hope that helps. The full version of this material is linked at the top of this post.