When singer Halsey started a public conversation about endometriosis last month, I doubt she knew she was a few weeks early for National Endometriosis Month. Nevertheless, her story brought to light an important issue and one that many women deal with. While I do not suffer from the condition, a number of my close friends do. I’ve seen them miss school, reschedule travel, and lose days being miserable on the couch from the extremely painful cramping that can be a symptom.
According to the American College of Obstetricians and Gynecologists, endometriosis affects “about one in ten women of reproductive age.” The condition has historically been diagnosed in women in their thirties and forties. As diagnostic tools have improved—and doctors have taken younger women’s complaints of intense pain during their periods more seriously—recent research now shows that “endometriosis often starts in the teen years, and one study found that up to 70 percent of teens reporting chronic pelvic pain will eventually go on to be diagnosed with endometriosis.”
What’s disturbing is that, on average, it takes ten years for the condition to be diagnosed in the U.S. The Endometriosis Foundation of America reports that “many endometriosis patients are misdiagnosed, often multiple times, leading to unnecessary and inappropriate treatment.” Clearly, it’s something more of us need to be aware of—for our sisters, our daughters, our friends, and ourselves.
The Endometriosis Association states that endometriosis “occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus.” It develops the same way it would if it were inside the uterus—building up to prepare for the possibility of fertilization. But when hormones register the breakdown process, it cannot be flushed out via menstruation the way the uterine lining can.
Instead, it can cause internal bleeding, inflammation, infertility, scar tissue, and the pain I witnessed in my friends, especially just before and during their periods. Pain may also occur during sex or during bowel movements or urination, depending on where the growth exists.
A Pain Like No Other
What my friends endured is medically termed “secondary dysmenorrhea.” It’s much more painful than typical period pain, to the point of being physically, mentally, and socially debilitating. Other symptoms such as frequent yeast infections and very long or heavy periods may suggest endometriosis. Some women don’t notice any symptoms.
A diagnosis can only be confirmed via laparoscopy, “a minor surgical procedure done under anesthesia [that] usually shows the location, size, and extent of the growths.”
If pain is a symptom, Dr. Lara Briden suggests a specific and direct explanation when speaking with your doctor. “Try to quantify it by saying something like: ‘My pain is so bad that I take __ painkillers per day.’ If your doctor dismisses your pain, then seek a second opinion.”
Causes Are Still Being Investigated
Doctors don’t know what causes endometriosis. There’s evidence that it may be congenital, genetic, or linked to autoimmune disorders. If your mother or sister has it, you may be more likely to have it as well. It’s also possible that endometrial tissue moves through the body through the lymph or blood systems.
In the past, the commonly accepted theory, known as “retrograde menstruation,” suggested tissue that backed up through the fallopian tubes during menstruation grew elsewhere in some women. The Endometriosis Foundation of America says that “it is now understood that 90 percent of women have retrograde menstruation and only one in ten have endometriosis,” disproving that theory.
Does This Mean I Can’t Have Kids?
The ACOG notes, “Almost 40 percent of women with infertility have endometriosis.” The condition causes inflammation, which may, in turn, “damage the sperm or egg or interfere with their movement through the fallopian tubes and uterus. In severe cases of endometriosis, the fallopian tubes may be blocked by adhesions or scar tissue.”
Surgery can remove the tissue and make a healthy pregnancy a possibility. Endometriosis.org states, “It is generally believed that 60 to 70 percent of women with endometriosis are fertile. Furthermore, about half the women who have difficulties with getting pregnant do eventually conceive with or without treatment.”
Fertility is not the only concern for those living with endometriosis. The condition “can impact all aspects of [women’s] lives—school, careers, finances, relationships, and overall well-being.” A study of women at the Outpatients’ Clinic for Endometriosis in Brazil found that “depression is highly prevalent in women with endometriosis, especially those with pelvic pain.” There are support groups online, and there may also be one out of your local hospital or doctor’s office. It never hurts to ask.
Making a Decision for Treatment
Pain relievers and hormonal meds, such as birth control pills, are often prescribed to treat symptoms. The latter is believed to “help slow the growth of the endometrial tissue and may keep new adhesions from forming,” according to the ACOG.
Anna Halpine, CEO of Fertility Education & Medical Management, agrees that there are often hormonal elements at work in cases of endometriosis. But she says, “The pill does often exacerbate it, as it does for many underlying conditions.”
According to Endometriosis.org, “Hormonal treatments do not have any long-term effect on the disease itself.” Drugs can minimize symptoms, but only as long as we take them. Medication also cannot remove present tissue. For that, the only current treatment is surgery. And while surgery can improve fertility, pain often returns within a couple years.
Dr. Briden encourages those with the condition to consider surgery “because early excision has been shown to eradicate the disease in some cases. Even when it isn’t a cure, surgery can significantly reduce pain and inflammation, which will give you an opportunity to find other pharmaceutical or natural treatments.”
The commonly accepted surgical course of action is “laparoscopic excision surgery,” a procedure that “removes the disease both above and below the surface.” The alternatives, ablation or cauterization, “only remove the tissue on the surface but neglect the tissue growing beneath the surface.” Of course, discuss your individual medical situation with your physician to determine whether surgery is the best course of action for you.
What You Can Do
An alternative approach is to make lifestyle changes, perhaps in addition to surgery. Regular exercise, an anti-inflammatory diet, and nutrition supplements may improve symptoms in a more sustainable way.
Ten years is a long time to suffer in silence. We can hope that the more awareness there is about endometriosis, the more women who will be diagnosed and treated, and in less time. Early treatment is key, even if there isn’t a cure—yet.
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