Endometriosis was first reviewed in scientific literature as far back as 1860 by Von Rokitansky.  140 years later, how far have we come in understanding this enigmatic disease?

We still have a long way to go in understanding what truly causes Endometriosis and how we can definitively cure it.  The disease still remains under diagnosed, under treated and under staged by some physicians.  However, we have indeed made great strides.  Breakthroughs in research are being made by the scientists who have dedicated their lives to understanding - and finding a cure for - Endometriosis.  Newer, more effective treatments are being developed and alternative methods are more readily accepted.  Myths have been dispelled and more awareness is being given to the disease  Advances in surgical methods and equipment bode well for the next generation of Endometriosis patients.  Better still, women are becoming more educated and empowered over their disease, so that they can take active roles in their own healthcare.

So what does the future hold for us?

Better Understanding of the Biology of Pain
We know that reasons for chronic or acute pain in Endometriosis patients on a cellular level include the release of such inflammatory agents at the implant site(s) as: prostaglandins, bradykinin, norepinephrine and adenosine, all inflammatory mediators of hyperalgesia. It has also been shown in studies that "message centers" at the site of inflammation, called "nociceptors," have a lower threshold for pain.  By understanding how and why pain occurs, healthcare providers can offer more effective management strategies of the painful symptoms associated with Endometriosis to their patients.  In addition, many patients today are incorporating alternative therapies and pain management programs into their lives to combat their chronic symptoms.  We still have a long way to go, however, before we see each Endometriosis patient's pain management needs met.

Recognition and Eradication of Disease
Gone are the days when "powder-burn" lesions were considered the only form of Endometriosis, present only on the reproductive organs.  Today we know that the disease comes in colors ranging from red to clear and that it can present itself nearly anywhere in the body.  Disease previously classified as "rare" is now shown instead to be commonly missed by lesser skilled surgeons.  We know all forms of the disease hurt, and any stage can cause infertility.  More treatment centers are cropping up all over the United States and the world, with practices dedicated solely to the treatment of Endometriosis patients.  Surgeons know now that Endometriosis can actually be present inside adhesions (which are painful in and of themselves), and the medical community is realizing that the most effective treatment for the disease is to thoroughly remove it through excision.  Finally, we know that one does not need a uterus to suffer from Endometriosis.  Using expert techniques, adhesion prevention, patient assisted laparoscopies, and many other advances in surgery, Endometriosis patients can expect better - and more effective - surgical care in the years to come.  Remove disease, remove the symptoms.

Is surgery still the only way to diagnose?  Unfortunately, invasive surgery like the laparoscopy is still the gold standard for diagnosis, treatment and disease staging.  However, next-generation MRIs and other non-invasive diagnostics can indicate that a patient might be suffering from Endometriosis.  Coupled with an increased awareness by physicians of the broad range of symptoms Endometriosis brings about, we can expect quicker diagnoses and faster treatment of the disease in the future.

Medical Therapy:  Not a Cure, but Might Offer Help
Thirty years ago, Danazol was considered the drug of choice to "cure" Endometriosis.  Of course, we know now that it does not cure it - and it has some pretty bad side effects of it's own.  While still prescribed by some, Danazol is no longer the first medical therapy offered to Endometriosis patients.  Today, GnRH (gonadotropin releasing hormones) agonist drugs like Lupron, Synarel and Zoladex are widely prescribed in an attempt to treat the disease.  We all know someone (or 100 someones) who has had a miserable experience with GnRHs.  What's on the horizon in medical therapy?

Abarelix:  a GnRH antagonist currently in clinical trials all over the United States.  Abarelix was designed to be more effective than GnRH agonists, without some or all of the side effects.

Aromatase Inhibitors:  new to Endometriosis but not gynecology, Aromatase Inhibitors have been used in the treatment of 30,000 cases of breast cancer over the past 20 years.  In the groundbreaking research of Endometriosis Research Center Medical Advisory Panel Member Serdar Bulun, MD, endometriotic stromal cells were shown to express the enzyme Aromatase. Aromatase is induced by large amounts of inflammatory prostaglandins through the disease process.  It is through this that the disease has been shown to be self perpetuating:  it does not need other sources of estrogen to proliferate.  It has been suggested in some studies that Aromatase Inhibitors offer anti-estrogenic effects with therapeutic value.  Dr. Bulun and others are currently researching the efficacy of this treatment method.

SERMs (selective estrogen receptor modulators): these are drugs that have been called "designer estrogens" because they mimic the action of estrogen where it's wanted, such as in the cardiovascular and skeletal systems, but avoid estrogenic action where it's not; i.e. breast and uterine tissue.  SERMs have been shown in animal studies to prevent bone loss and estrogenic proliferation; in one study on rat models, the SERM raloxifine was administered versus no treatment. Within 2 weeks, models who received raloxifine had a significant decrease in uterine weight and exhibited overall anti-estrogenic effects. In another study on rhesus monkeys with Endometriosis, treatment with SERMs resulted in decreased uterine size and significant decreases in lesion size.  There are several SERM studies underway, including one at the National Institutes of Health on the use of raloxifine in patients with Endometriosis.

Extracellular Matrix Modulators: in a similar fashion to the above, the proliferative endometrium expresses enzymes.  Isolating and destroying these enzymes through the use of anti-estrogenics may be the future in medical therapy of Endometriosis.

Terbutaline:  currently used to prevent premature labor, studies are underway to determine the efficacy of this drug as potential treatment for Endometriosis pain. Terbutaline relaxes the uterine muscles and can be helpful in easing menstrual pain related to the disease.

Angiogenesis:  Stopping the Lesion at it's Source
Professor Stephen Smith, well known for his extensive research in this exciting area, has indicated this may be a promising new treatment; though cautions us that we are still 5-10 years out from using it as a formal alternative.

Endometriosis is known to be a hormone-dependent disease.  Angiogenesis holds that ectopic tissue requires blood supply, regardless of size, location or theory of implantation. Without blood vessel development, hormone impact can be negated. Hence, Endometriosis lesions can be potentially destroyed by cutting off their blood supply.

Angiogenesis has interesting implications on the prevention of adhesion formation as well. It may be shown through further studies that this highly complex and unique technique holds real opportunity for treatment in Endometriosis, whether alone or as an adjunct therapy.

Correcting the Imbalance:  Immunotherapy
ERC Advisory Board Member Deborah Metzger, MD, Ph.D., regularly incorporates this treatment approach into her practice at Helena Women's Health everyday.  Part of her groundbreaking Endometriosis treatment program, which she calls the "4 Pillars of Healing," involves the immune system.  Previously overlooked but now proving to be a big part of the Endometriosis picture, immune dysfunction plagues many patients.  By treating this dysfunction, Dr. Metzger and her partner, Dr. Andrew Cook, are able to treat symptoms ranging from fatigue to allergies to opportunistic infections.  For detailed information on the "4 Pillars of Healing," please contact Helena Health.

Endocrine Disruptors:  Let's Clean up our Act (and our Environment)
We have indeed come a long way in recognizing the role of environmental factors as contributors to Endometriosis and other health maladies.  Dioxins are one such pollutant.

Endocrine disruptors are chemicals present in our environment that, by virtue of their ability to interact with the endocrine system, are causing a variety of adverse health effects in humans and animals.   Because the endocrine system plays such a critical role in normal growth, development and reproduction, even small disturbances in function may have profound and lasting effects. The Committee for Environment and Natural Resources notes, "the seriousness of the endocrine disruptor hypothesis and the many scientific uncertainties associated with the issue are sufficient to warrant a coordinated federal research effort."  For more information on the CENR, please visit their website.

The US Environmental Protection Agency clearly describes dioxin as a serious public health threat. The EPA report states, there is no "safe" level of exposure to dioxin - even trace amounts are a risk. Further, the EPA report confirmed that dioxin is a cancer hazard to people; that exposure to dioxin can also cause severe reproductive and developmental problems (at levels 100 times lower than those associated with its cancer causing effects); and that dioxin can cause immune system damage and interfere with regulatory hormones. Dioxin exposure to women in particular, poses additional risks than just that of their own health: it crosses the placenta into the growing infant and is also present in the fatty breast milk, thereby exposing the child.

Evidence of dioxin as a catalyst for Endometriosis has been well-documented. In a 1996 Environmental Protection Agency study, dioxin exposure was linked with increased risks for Endometriosis, as well as the increased risks of pelvic inflammatory disease, reduction of fertility, and interference with normal fetal and childhood development. The EPA conclusions regarding dioxin exposure are particularly alarming in light of a 1989 Food and Drug Administration report, which stated that "possible exposures from all other medical device sources would be dwarfed by the potential tampon exposure."

According to a February 2000 report from the Food & Drug Administration, tampons and feminine hygiene products currently sold in the U.S. are made of cotton, rayon, or blends of rayon and cotton. Even though these products are now produced using elemental chlorine-free or totally chlorine free bleaching processes, these methods can still generate dioxins at "trace levels." Thus, there may be low amounts of dioxin present from environmental sources in cotton, rayon, or rayon/cotton tampons and feminine hygiene products.

In April 2000, Assemblyman Dennis Cardoza of California (D-Merced) passed AB 2820 out of the Assembly Committee on Health.  Supported by testimony to the Assembly by organizations like Planned Parenthood and the Endometriosis Research Center, AB 2820 is a study bill designed to research the biological effects of feminine hygiene products on women and their offspring. While the industry states their products are perfectly safe, there are conflicting studies performed by research institutes stating these products may contain low levels of a dioxin.  Assemblyman Cardoza said that he "hopes this study will clear up the current hysteria and confusion.  I think consumers have a right to know, without a doubt, that the products they use are completely safe."  Never before has a study been conducted outside of the industry to measure the biological effects feminine hygiene products may have on their consumers. Currently, the FDA regulates these products, but rely on industry studies as proof that the products are not harmful. Industry research cannot be shared with the public because it is of a proprietary nature, so the public is left without firm knowledge of the product's safety.

For more information on Dioxins, Endometriosis and AB 2820, please request a complete copy of the ERC's testimony before the California State Assembly.

Is your Food Harmful to your Health?
Did you order pesticides the last time you ate out?  Did you serve your family steroids at dinner yesterday?  Current research shows you might have.

Pesticides are used to control weeds and pests.  These chemicals are abundant in the American diet because they are found in meat, fish, chicken, pork, dairy, coffee, fruits and vegetables.  Even though they are banned within the United States borders, they can reach us through products grown in other countries.  Steroids and hormones are fed to our livestock in order to induce growth - these harmful additives are then passed on to our families and ourselves.

To avoid ingesting these substances which we now know can be hazardous, you can purchase organic products and meats that are certified drug free and/or reduce your red meat, dairy and egg intake; scrub and peel your fruits and veggies; avoid imported produce; caffeine, alcohol, tobacco and processed (canned/prepackaged) or smoked foods; and eat a diet high in fiber and antioxidants.  For more information on diet and nutrition, check out "Endometriosis: Healing Through Nutrition" by Dian Shepperson Mills, MA & Michael Vernon, Ph.D.

"Alternative" Therapies
Once considered the "alternative," diet/nutrition, exercise, herbal remedies and complementary therapies like Yoga are becoming either adjunct or preferred modalities for pain relief and treatment by many Endometriosis patients.  Widely accepted and encouraged in the medical community, these non-invasive techniques are helping many women cope with pain, decrease their symptoms and improve their overall general health.  We have come a long way from the days when such approaches were considered "fringe" and "alternative."

By educating ourselves and each other, doctor and patient alike, we are on the road to unlocking the mysteries of this disease.  As we enter the millennium, we can be hopeful and encouraged in knowing that our daughters will not suffer as we have.

For more information on Endometriosis, please visit the ERC online.

References and additional information:
"Coping with Endometriosis," Motta & Phillips, 2000. ISBN #1583330747.
"Endometriosis: Healing Through Nutrition," Shepperson Mills & Vernon, 1999.  ISBN #1862043000.
Proceedings of the 7th Biennial World Congress on Endometriosis, London, United Kingdom. May 2000.  Presentations in part by Olive, David MD; Kennedy, Professor Stephen; Thomas, Professor Eric; Garry, Professor Ray.
"Aromatase Inhibitor update," Serdar Bulun, MD & the Endometriosis Research Center.  http://www.endocenter.org / 800-239-7280.
Committee for Environment and Natural Resources,  http://www.epa.gov/endocrine/
"4 Pillars of Healing," Metzger, Deborah MD, PhD. http://www.helenahealth.com
United States Food & Drug Administration.  http://www.FDA.gov
National Institutes of Health. http://www.nih.gov
United States Environmental Protection Agency. http://www.epa.gov

Copyright © by Heather C. Guidone.   All rights reserved.  Do not reproduce without express permission.