It is estimated that in the United States 11 percent of women ages 15-44 have endometriosis. It is especially common among women in their 30s and 40s, and estimated to affect more than 6.5 million women in the U.S.
In many ways, endometriosis is a mysterious disease. We don’t know why in some women part of the menstrual flow (called retrograde menstrual flow) streams up the fallopian tubes and into the tissue surrounding the ovaries instead of going down and out the uterus. The endometrium around the fallopian tubes and in the membrane lining covering the abdominal organs (peritoneum) thickens, breaks down, and bleeds as it would in the uterus during menstrual cycles. This can cause inflammation which in turn promotes the formation of adhesions (scar tissue).
Endometriosis is also a mysterious disease in that women feel the pain of endometriosis differently. Pain would most often be an early symptom, but there is not always a correlation between abdominal pain and the degree of endometriosis. Some women with the most severe endometriosis have no symptoms, while others with minimal endometriosis have debilitating pain.
We may not know precisely what causes retrograde menstrual flow, but it’s widely believed that there is a hereditary component. If your grandmother or mother had endometriosis, you are predisposed to develop endometriosis yourself. Though you can’t prevent endometriosis, there are some things you can do to reduce your chances of getting it. We know that estrogen promotes the development of endometriosis, so ensuring that any hormonal birth control you are taking has low doses of estrogen is important. Avoiding excessive consumption of alcohol and caffeine is considered helpful, as is exercising regularly.
Endometriosis is progressive. It develops slowly over time. If left untreated, there are different courses endometriosis can take. Symptoms can include painful intercourse, infertility, bleeding between periods, gastrointestinal issues, and lower back pain. Infertility and pain are among the first symptoms. If left untreated, endometriosis can cause pelvic structures to adhere to each other. The disease can eventually cause ureters (the tubes bringing urine from the kidneys to the bladder) to close, possibly ending in kidney failure. Endometriosis can even grow in incisions and on body surface skin. For these reasons, it’s important to diagnose and treat endometriosis as soon as possible.
Sometimes medications are given to treat endometriosis, which can be hormone suppressants or pain medications. Depending upon the severity of the symptoms, laparoscopic surgery may be used to remove the tissue and adhesions. There is always concerns with suppressing hormones that bone loss will occur, but with endometriosis treatment, the course of hormone suppressants often lasts only 15 months. It has been shown that bone loss can be reversible when the hormone suppressant is stopped. Hormones in menopausal women have been studied for many years.
Pregnancy can occur with endometriosis. Sometimes surgery and anti-hormone medications such as Lupron can help with pregnancy. You may still possibly be able to have a healthy pregnancy and birth with endometriosis. A c-section birth may be a little more complex because of the adhesions caused by the endometriosis. Pregnancy doesn’t cure endometriosis, but it does set back the progression of the disease. The issue of whether endometriosis interferes with pregnancy hasn’t been resolved.
Many women who have experienced this disease continue to live happy healthy lives. You are not alone.