The scientific and medical director of the Endometriosis Foundation of America, Dr. Dan Martin, MD, explains why endometriosis often goes undiagnosed for so long, and what patients and providers can do about it.
Dr. Dan Martin, MD
Scientific and Medical Director, Endometriosis Foundation of America
Why in 2021 are so many menstruating bodies still suffering from endometriosis without a cure?
One major reason is the normalization of pain by patients themselves, mothers, sisters, friends, and physicians. Pain is not always taken seriously. Although we may hold physicians to a higher standard, they are only part of the problem.
A second problem is that there are many diseases that have the same symptoms as endometriosis. Physicians must be concerned about all of these diseases. Compounding this is that although 10 percent of women are diagnosed with endometriosis, that is 0.2 percent per year. Although specialists see several endometriosis patients a week, most physicians see only 1-4 a year. We need a better pathway to get those women with pain to specialists who are concerned with the possibilities daily.
Then there is the problem that we have no simple tests to diagnose endometriosis. Diagnosis generally requires a surgical procedure. In addition, all endometriosis is not recognized, not even with surgery. Some endometriosis is too small to be seen while other lesions are hidden behind the pelvic lining or within organs such as the ovary, tubes, and bowel.
How long does it typically take for menstruating bodies to experience pain before being diagnosed with endometriosis?
Staal and others found a median delay of 7.4 years with 25 percent taking more than 14 years. Infertility patients were diagnosed more quickly at 1.75 years. This suggests that infertility was seen as a disease while pain was normalized.
What effect does endometriosis have on fertility?
Infertility is associated with inflammation and scarring. If the inflammation involves the endometrium, the uterine lining where babies grow, implantation may not occur. When scar tissue is between the tubes and ovaries, the pathway for the egg may be blocked.
How can those living with endometriosis start on their journey to parenthood?
The first step for people who were diagnosed with and treated for endometriosis before they tried to get pregnant is to start trying. Often, they can become pregnant without additional treatment. If they are not pregnant within 6-12 months, the next step is an infertility evaluation. That includes investigations for ovulation, sperm counts, and coexistent medical problems that may be as or more important than endometriosis.
If the only problem is endometriosis, then tests such as endometrial biopsies for BCL6 looking for inflammation can suggest the use of GnRH analogs or surgical removal to decrease inflammation prior to in vitro fertilization. Laparoscopy can be used to remove adhesions that can block the pathway for the eggs. Even with significant adhesions, in vitro fertilization can result in pregnancy.