Untangling knots

Endometriosis, an illness that is fast becoming a scourge among females of child-bearing age, is a little-understood condition that can wreck havoc on health, emotions, career, relationships and sexuality. It causes infertility in about 40 percent of its victims and qualifies with Social Security for disability. Its cause is unknown, but theories range from genetic predisposition to allergies to environmental toxins. Indeed, recent research shows an astounding correlation between exposure to dioxin -- a toxic chemical byproduct of pesticides, waste incinerators and paper bleaching -- and the development of endometriosis.

And the number of cases are soaring, affecting younger and younger girls. One in 10 American women now has it. "The Endometriosis Sourcebook" states, "Endometriosis now affects an estimated five-and-a half million girls and women [all races, all income groups] in the United States and Canada ... and millions more worldwide."

What is known is that endo, as it is dubbed, is an estrogen-dependent disease that occurs when the endometrium -- the tissue that lines the inside of the uterus -- exists outside the uterus, attaches to a site (usually other organs) and transforms into implants, lesions or cysts. Such growths have even been found in patients' lungs, liver, arms and thighs. With no way to exit the body, they inflame adjacent areas and form scar tissue called adhesions. The adhesions create weblike tentacles among the organs, pulling them painfully together.

Traditional theories and treatment have been confounding, confusing and condescending, and the prognosis grim.

My research into this medical conundrum began last winter when my 26-year-old daughter began experiencing chronic, excruciating abdominal pain. Her primary-care physician quickly eliminated all the basic possibilities and urged a gynecological exam.

"He implied it's all in my head and said I overreacted to the pain of the exam," fumed Melissa after her visit to a young, greenhorn gynecologist she'd found on her insurance list. "Or that it could be appendicitis! He brushed off my questions about endometriosis. In his report to my doctor he called me ‘interesting.' I know what that means."

It meant the old gender bias -- that females are neurotic -- was alive and well in that particular office. Combined with the unspecific nature of the symptoms, such bias historically left millions of suffering women undiagnosed for years. In some quarters ignorance lingers, especially since pain levels vary among patients, depending on the extent of adhesions and the size and location of implants.

Within two weeks of the greenhorn's bungling, a second gynecologist diagnosed Melissa with endometriosis.

Missing signals

Why are some physicians dismissive? Because they consider endo's symptoms -- intense menstrual cramps, excessive menstrual bleeding, irregular menstrual periods, abdominal pain, painful sexual intercourse, enervating back pain, frequent and painful urination or retention -- to be "just girl stuff."

Because medical testing of any kind seldom shows endo, until 20 years ago women were diagnosed only through major surgery. Now the definitive diagnostic process involves laparoscopy. In this surgical procedure, performed under anesthesia, the patient's abdomen is distended with carbon dioxide gas, then a small abdominal incision is made and the laparoscope -- a lighted, thin tube -- is inserted so the surgeon can search the organs for evidence of the disease.

For decades it was mistakenly thought that pregnancy and hysterectomy guaranteed an end to endo symptoms. Young women were urged to have babies, regardless of whether they wanted them. Others were persuaded to undergo a hysterectomy to get rid of estrogen-making ovaries. Neither event guarantees permanent elimination of endo.

Today, symptoms can still only be treated; there is no cure. And the cause remains elusive.

Some unproven theories for endo's cause:

Sampson's theory of retrograde menstruation, circa 1921: Dr. Sampson believed that during a woman's period some menstrual fluid flowed backward from the uterus to "shower the pelvic organs and pelvis lining" with endometrium cells.

The transplantation theory: Endo spreads via the circulatory and lymphatic systems.

The latrogenic (or doctor-caused) transplantation theory: Endo is accidentally transported during surgery -- rare in today's operating rooms.

The coelomic metaplasia theory: Certain cells, when stimulated, can transform themselves into a different kind of cell, as in women taking estrogen-replacement therapy and in men who, following prostate removal, have received estrogen.

The heredity theory: women with family members who have endo may be genetically susceptible to it.

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The immunology theory: Endo strikes women who are deficient in certain immune cells.

The environmental-chemicals theory: Compelling research indicts chemical toxins, such as PCBs, DDT and dioxin, whose actions on the body mimic that of hormones.

The all-of-the-above theory.

Treatment for endometriosis includes: a complete hysterectomy -- long considered the treatment of choice until research proved a high percentage of recidivism; hormone treatment, including testosterone derivatives, progesterone, oral contraceptives and agonists that suppress hormone production, and which in many women cause serious side effects; laparotomy, or open abdominal surgery; laparoscopy with cautery, laser or scalpel/scissor excision; alternative therapies such as acupuncture, exercise, herbs and homeopathy; and pain medication.

A promise broken

My daughter's laparoscopy in March was unsuccessful. Gynecologist No. 2 had simply cauterized her lesions rather than, as promised, vaporized them with laser. Complications arose from negligent, cattle-call aftercare, and within weeks her symptoms were back. The doctor impatiently suggested that soon-to-be-wed Melissa be put into medical menopause.

The last thing Melissa wanted was to begin married life battling the beastly side effects of menopause-inducing drugs. So, in June, less than four weeks before her marriage, she turned to Winter Park gynecologist Dr. Robert J. DeMaio, who scheduled her for a laser laparoscopy.

DeMaio has deep sympathy for his patients and is irked by men who are impatient with partners suffering. "If any guy questions your pain," he told Melissa, "just tell him to imagine having to carry on his life with his testicles sewn to his scrotum, then the whole package sewn to his thigh. "

DeMaio says there is definitely a marked increase of the disease in younger females and suspects that a compromised immune system is among factors that cause endo.

Dr. Arnold Kresch, of the California Center for Pelvic Pain and Fertility in Palo Alto, agrees. "Endo has got a definite connection with the immune system. In some people with mild disease, just treating the immune system can often be enough to give relief. In severe cases, our comprehensive program includes extensive surgery."

However, the medical community is far from a consensus, which exacerbates the angst of women with the disease: Who to listen to, believe, trust?

Dr. Serdar Bulun, a reproduction endocrinologist, researcher and faculty member at the University of Texas Southwestern Medical Center in Dallas, says he has found proof of a genetic cause of endo. "I have shown that endometriosis produces its own estrogen, synthesizing itself by using an enzyme called aromatase. Aromatase is expressed in the endometrial tissue of women with the disease."

Aromatase, he concludes, is why drugs used to shut down the ovaries usually work only for the duration of the protocol; the local estrogen production is not blocked.

"A new medication called aromatase inhibitors block that production," says Bulun. "In a limited number of patients, treatment was very successful."

There are side effects, though, including hot flashes and serious bone loss.

Bulun is among a dwindling number of doctors who still believe Sampson's theory. "The majority [of endo cases] are accounted for by Sampson's theory, in my belief. However, why all women don't develop it is the million-dollar question."

Dr. Wayne Konetzki, an environmental allergist in Waukesha, Wisc., says he has the answer: Women with the disease are allergic to some of their own hormones.

"One hundred percent of the women who come into my office are allergic to the luteinizing hormone, which stimulates ovulation, and to candida albicans, a yeast. Candida plays an important part in the development of endo because its toxins adversely effect the ovaries."

He claims that of all women with endo, "only those sensitive to their own hormones will ever have symptoms."

Konetzki treats patients with allergy desensitization, oral yeast killers and dietary changes. "I can prevent the need for any surgery," he says.

Tell that to Dr. David B. Redwine.

"Endo is a disease which can be treated only by surgery," says Redwine, director of the Endometriosis Institute of Oregon, in Bend. The surgical technique he developed, extensive laparoscopic excision of endo lesions, has been highly successful in thousands of women from around the world.

Redwine rebuffs Samson's retro theory as "lame" and disproved. He believes that at conception a woman is dealt a chance that she'll develop endometriosis. During organ development certain tissues are laid down that may have the ability, with estrogen stimulation, to change into endo.

"This tissue is laid down with four or five distinct patterns seen over and over again in adult women. Distribution of the disease is not random. [It] is the only theory that can explain the occurrence of endometriosis anywhere in the body, as well as in men."

Neither does he treat endo with drugs. "Medical therapies mask symptoms [and] encourage incomplete surgery, because the surgeon can stop short and believe that medical therapy will clean up the disease left behind."

His success rate is impressive and recorded in a published longitudinal study that followed 359 patients. "The risk of finding new endometriosis at five years after complete excisional surgery is about 19 percent, and when disease is present, it is ... superficial and minimal."

Redwine has used the same simple instruments since 1978 -- 3-millimeter scissors and graspers. His careful scrutiny of tissue and his technique of dissecting deep beneath lesions account for his success.

Dr. Robert Albee, a founder of Atlanta's Endometriosis Care Center, although differing in his belief of what variables cause endo, contributes the turnaround in his treatment of patients largely to learning Redwine's technique.

Dr. Albee says he finds no strong correlation among patients except for an early start of menstruation, but he is finding endo more often in very young females. "I almost never do a laparoscopy on a 13-year-old without finding it."

While acknowledging the sizable increase in cases of endometriosis, Albee questions, though, whether that increase represents more disease or more awareness of the disease.

Mary Lou Ballweg, founder and president of the renowned Endometriosis Association and author of "The Endometriosis Sourcebook", doesn't question. "At the Sixth World Congress on Endometriosis [held this past summer] we were able to show comparison data from the early 1980s that prove the disease is starting in much younger females and is much more severe."

Ballweg believes that endo is a pandemic disease triggered by environmental poisoning. And she is armed with scientific evidence that ties dioxin to it.

Worldwide awareness

The Endometriosis Association began in Milwaukee, Wis., in 1980, with eight members. Now highly regarded not only by physicians but by the National Institutes of Health, it has grown into a global association with membership in 66 countries.

Through its research registry, which has gathered an astounding amount of data from hundreds of thousands of women with endo, association-driven research has connected organochlorines to endometriosis for the first time.

Organochlorines, such as dioxin and PCBs, occur when chlorine is combined with organic materials such as petrochemicals. PCBs and DDT, now banned in America, have accumulated in the global environment because of long "shelf life." Concentrated in animal and fish flesh that humans consume, these bad boys are still manufactured here for export to other countries, and they eventually re-enter our borders riding produce, rain and ill winds.

Spurred by Canadian studies showing spontaneous endo induced in monkeys exposed to PCBs, the association acquired a colony of monkeys once used to study dioxin's impact on reproduction. Researchers operated on the group and found that 79 percent of the animals exposed to dioxin had developed endometriosis.

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Could the body's accumulation of dioxin and/or other toxins be the catalyst in the change described by all the various theories?

The genesis of the silent springs of endo daughters may well lurk in the chemical heritage of their mothers. Because of vast use of organochlorines in chemical weapons manufacture during WWII, babies of the 1940s were the first to receive significant exposure to toxic chemicals (not to mention lead, asbestos and mercury.) And in peacetime, children often played in the wake of trucks spraying DDT for mosquito control.

It is likely that those little girls grew up to unwittingly pass along some chemical accumulation to their fetuses. Babies of the '60s and '70s had that inheritance enhanced by being born into an environment saturated with combustion gases like carbon monoxide, formaldehyde and organic gases used in the production of thousands of products.

Although few of us can tackle this medical enigma as researchers, we can combat it in small ways that make large differences: support research, encourage public awareness, become thoroughly educated about endo and be an environmental-health activist.

Endometriosis is a disease that is altering the functionality of whole populations at the rate of one suffering girl or one suffering woman at a time. If you don't know any girls or women suffering from endo, you will.

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