Women with endometriosis now represent a $600 million market for medical services and products. Because many sufferers are misinformed about their disease and treatment options, they risk exploitation and medical
mismanagement, says Mary Lou Ballweg, executive director of the Endometriosis Association.
”We have to come to terms with the realization that women have to do their homework, be informed about their treatment choices and network with others who have the disease,” says Ballweg, 43, who suffered the symptoms from the age of 16 but was not diagnosed until she was 31.
”It`s easy to hear about the latest treatments-new surgeries, new drugs- and think, wow, that`s it! (But) nothing is simple about treating endometriosis.” Many factors have to be weighed-age, ability to tolerate pain and concerns about infertility, she said.
For many of the estimated 5 million American women who have the disease, severe pelvic pain occurs like clockwork with each menstrual cycle, and coping with infertility, painful sex and exhaustion are often part of daily life.
”Because we women with endometriosis are such a large market and often are in a lot of pain and desperate, we represent easy targets for all kinds of services and products, some useful and some not; some safe and some not, We may have been victims, in a way, in getting the disease but we do not need to be victims of the economic forces around us because of the disease,” Ballweg wrote in a letter to the membership.
Ballweg, still takes medication for the disease, even after having a hysterectomy in 1982. She founded the association in 1980, after endometriosis made it impossible for her to continue operating her national media consulting business.
Ballweg is calling for more public attention and government money for research, ”the kind that is long and painstaking and might not produce quick results or a drug that will make millions.” Without it, she says, a cure for the disease, which may be linked to an immune-system defect, likely will remain elusive.
The cause of endometriosis is not known, according to Ballweg and researchers in the field. Earlier theories had identified common traits among sufferers, such as thinness or postponing pregnancy. It had been dubbed the
”career woman`s disease.”
The theories have proven unfounded, according to Ballweg, because as more women reported the condition, the population of sufferers was found to be much broader.
When the disease occurs, the cells lining the uterus (endometrial cells)
flow back into the pelvic cavity and attach to surrounding tissues such as the ovaries, the fallopian tubes and even the bowel and bladder.
The renegade cells, called implants, are stimulated each month by the estrogen produced by the ovaries during the menstrual cycle, and engorge with blood. When the swollen growths shed small amounts of blood, the tissue becomes inflamed and scarred.
As the disease progresses, it can take control of a woman`s life, said Betty Orlandino, clinic director of the Pelvic Pain Relief Institute of Chicago, a private treatment center.
”Endometriosis is a whole-health problem; it`s not just a monthly thing,” said Orlandino, a social worker who was diagnosed with the condition 25 years ago.
”It affects your sex life. It stalls careers. You can be the best employee in the world but if you miss work or show up but can`t function because you`re in so much pain, you won`t last long on the job. I have patients who plan their entire work schedules and business projects around their menstrual cycle.”
There is no cure for endometriosis, says Ballweg. She compares the search for answers about the disease to solving a Rubik`s Cube puzzle.
”Endometriosis seems to me to be a disease that has been looked at almost entirely from one side, as a reproductive hormonal disease. But suppose one turns the cube to look at other sides, suppose just for the sake of possibilities, that it turned out not to be basically a reproductive disease? What if, for example, it is an immunologic disease that has reproductive problems as its most visible `symptom`?” Ballweg writes in her book,
”Overcoming Endometriosis: New Help from the Endometriosis Association”
(Congdon & Weed, $12.95).
Recent research supports that theory, according to Dr. W. Paul Dmowski, a reproductive endocrinologist. Endometriosis has been called a benign cancer
”because although it`s not malignant, it can spread to all of a woman`s organs just like cancer does,” explained Dmowski, director of the Institute for the Study and Treatment of Endometriosis, a non-profit program with offices at Grant Hospital and in Oak Brook.
”Endometrial cells can grow in any part of the body: the pelvis, the lungs, even in muscles.”
They migrate, probably through blood vessels and the lymphatic system, and attach to organs and tissues. In addition to pelvic pain, symptoms such as chest pain or muscle pain, which occur with cyclic regularity, are a hallmark of endometriosis, he said.
Endometrial cells cannot grow outside the uterus unless there is a glitch in the immune system, said Dmowski, ”because the job of the immune system is to perform surveillance continuously, and to recognize and remove abnormal cells.”
It is believed that during the menstrual cycle, nearly all women experience some backflow of endometrial cells, which triggers a search-and-destroy response in the healthy immune system, he said. But when that response is sluggish or impaired, cell growth is virtually unchecked.
Additional support for the theory that endometriosis is caused by an immune-system defect has come out of studies done by Dmowski and other researchers in an effort to develop a diagnostic blood test for endometriosis. There are detectable amounts of auto-antibodies (blood proteins that interact with and destroy a patient`s own cells) in the blood of more than 50 percent of women with endometriosis, reported Dmowski.
”Ultimately, the treatment of endometriosis will involve the modulation
(adjustment) of the immune system,” he predicted. Until then, the most effective drug therapies recognize the interrelationship between hormones and the reproductive and immune systems, he said.
The basic strategy is to deprive endometrial cells of the estrogen they need by manipulating hormone levels. There are several such drugs on the market, including a new generation of man-made hormones called gonadotropin-releasing hormone (GnRh) agonists.
The GnRh drugs-Lupron (given by injection) and Synarel (a nasal spray)-
were approved by the FDA last year for the treatment of endometriosis, provided they are not given to a patient for longer than six months. (The drugs are still being tested for side effects from long-term use.)
Lupron and Synarel induce a temporary pseudo-menopause. They ”bind” to certain receptor sites on the ovaries, blocking the attachment of pituitary hormones that normally set off the chain of events that cause ovulation and the production of estrogen and progesterone.
”They can reduce the level of estrogen to that of a woman who has had her ovaries surgically removed, without the masculinizing side effects of Danazol (a steroid used to treat endometriosis),” said Dr. Frank De Leon, a Northwestern University associate and reproductive endocrinologist who is conducting clinical tests. The side effects are similar to the problems associated with menopause: hot flashes, mood changes and headaches.
The advantage of the therapy is that unlike surgery, which is permanent,
”once the drug is discontinued the ovaries can return to normal function,” even enabling some patients to have normal pregnancies, he said.
Danazol, a synthetic testosterone derivative, has been used for several years with mixed results. Because it is a man-made male hormone, Danazol`s side effects may include hair growth, weight gain, acne, decreased breast size, vaginal dryness, muscle cramps and headaches. Many women cannot tolerate the drug.
Estrogen-supressing drugs are sometimes used in conjunction with laparoscopic laser surgery, an outpatient procedure to eliminate endometrial implants.
The laser is ideal for treating endometriosis, according to Dr. J. Victor Reyniak, a professor at Mt. Sinai Medical Center in New York. A laser is fed through a telescopic tube called a laparoscope.
According to Reyniak, ”When you take the laser (an intensified, concentrated beam of light) out of focus, instead of cutting you can vaporize cell layer by cell layer without causing thermal damage to underlying organs such as the ureter or bowel. . . . The results are promising. And lasers destroy the DNA of the cell, the genetic material that guides the cell`s reproduction, so the disease is less likely to reoccur in the same spot.”
One of the greatest challenges for a woman with endometriosis is finding a physician who will take her symptoms seriously, said gynecologist Dr. Louis Myers, an associate professor at Northwestern University, and medical director of the Pelvic Pain Institute.”There`s a lot of underdiagnosis. Many physicians are trained to believe it`s not a serious condition. It`s a bias of our culture.”
It is not unusual for women to report seeing three or four physicians before they are diagnosed, he said. Frequently they have been advised by their doctors to accept their pain ”as a normal part of menstruation,” or they are told their problem ”is mostly in their heads.”
”Early diagnosis presents the best opportunity for successfully treating the disease, but doctors (who dismiss early-stage symptoms as medically insignificant) are saying, in effect, that it`s not important until it`s too late. By then there`s so much damage that a hysterectomy is all that`s left to do.”`
Women are often overwhelmed by the choice of treatment options.
”A woman should find a physician who is experienced in a variety of treatment options and who will sit and patiently discuss the alternatives and the risks and benefits of each,” said Dmowski. ”Then and only then should the decision be made on how to manage the endometriosis.”
