ring prevents the endometrium from developing properly each month, preventing implantation. Other theories suggest that the inflammatory milieu that accompanies endo creates an unfavorable environment for pregnancy.
5. MANY WOMEN WITH ENDO GO UNDIAGNOSED.
Up to one in 10 of all pubescent girls and women worldwide have endo. In the U.S., that translates to some 6.5 million females of reproductive age. Some experts say the number is higher because many women go undiagnosed. That's because some women confuse the pain of endometriosis with normal period pain, and others just don't talk about it. On the other hand, "Not all menstrual pain is endo," Patzkowsky says.
6. THERE ARE SEVERAL WAYS TO LOOK FOR ENDO, BUT ONLY ONE WAY TO BE SURE.
The first step is usually a pelvic exam. The doctor will feel for cysts or areas of scar tissue behind a woman's uterus, in an area called the Pouch of Douglas, a common site of endometrial lesions. If the doctor suspects endo, an ultrasound or MRI will often provide more information. The only sure way to diagnose endo, however, is laparoscopy with biopsy—a minimally invasive surgical procedure that allows a doctor to view a woman's internal organs using a small camera and take tissue samples (biopsies) for testing. Laparoscopy is considered the gold standard of endo diagnosis.
Diagnosis also involves determining the stage of the disease based upon the location, size, and depth of the lesions; the presence and size of endometriomas in the ovaries; and the presence of scar tissue. Most women have mild scarring and only superficial lesions, indicating that they have minimal or mild endo. Women with endometriomas and more severe scarring have moderate or severe endometriosis.
In an odd twist, "The stages don’t necessarily correlate with the types of symptoms or degree of pain a woman experiences," Patzkowsky says. For some women, a further element of diagnosis is determining her likelihood of getting pregnant, using the Endometriosis Fertility Index [PDF], a scoring system that considers a woman's age, reproductive and infertility history, and endo severity to predict her chances of conceiving.
7. TREATMENTS AIM TO REDUCE THE SIZE OF THE LESIONS.
If a woman with endo doesn't want to get pregnant, her doctor might prescribe hormonal treatments to reduce the amount of estrogen in her body. Extended cycle and continuous cycle birth control methods reduce or eliminate the number of periods a woman has, blocking the cyclical effects of estrogen. If pregnancy is the goal, however, a woman's doctor might briefly prescribe gonadotropin-releasing hormone agonists—hormone-blocking drugs that induce a sort of temporary menopause that stops a woman's production of estrogen and can often decrease the size of endo lesions. The treatment period typically lasts several weeks to a few months. When the treatment ends, the woman's body will begin to produce estrogen again, providing her a brief window of time in which she has a chance of getting pregnant before the lesions return.
Surgery to remove endo lesions is also an option, but only in severe cases or in situations when a woman can't take hormonal therapies or hormones haven't been successful in the past.
8. ENDO IS COSTLY, AND NOT JUST IN DOLLARS.
Quality-of-life assessments don't accurately capture the toll endo takes on women: Findings from a 2011 study of more than 1400 women with endo found that women lost more than 11 hours of work each week chiefly due to reduced productivity (not absence). A second study, conducted in 2012, estimated that endo costs an affected woman more than $10,000 per year, comparable to diabetes, Crohn's disease, or rheumatoid arthritis. Endo also interferes with sexual pleasure and satisfaction.
9. AN ENDO DIAGNOSIS DOESN'T HAVE TO FEEL LIKE THE END OF THE WORLD.
Many women with endo lead full lives. Northern Irish politician Naomi Long and Australian swimmer Emily Seebohm, an Olympic gold medalist, have shared their personal trials with the condition. Women with endo get pregnant, too, and often have successful pregnancies. "En