Earlier this year, the 31-year-old actress and author Lena Dunham wrote an essay in Vogue about having her uterus removed in an attempt to treat her endometriosis, a painful and sometimes difficult to treat condition in which the uterine lining grows outside the uterus.
Dunham is one of a string of high-profile female celebrities who have recently been vocal about their struggle with endometriosis, or “endo,” as it’s sometimes called; others include singer-songwriter Halsey and actress Julianne Hough. They’re just three of the millions of American women living with the disorder. In fact, it’s estimated that one in 10 U.S. women have endometriosis, a number on par with thyroid disease.
A common yet lesser-known condition
Endometriosis is most common among women in their 30s and 40s. The women at highest risk include those who have not had children; whose menstrual cycles last longer than seven days; or who have a mother, sister, or aunt with the condition. (Having a close female relative with the condition ups your own odds by five to seven times, according to the Endometriosis Foundation of America.) The name is derived from endometrium, the tissue lining the uterus, which is typically shed during menstruation. But when the lining grows on the ovaries, fallopian tubes, cervix, bladder, or other places in the body where it doesn’t belong, it can cause immense discomfort in the form of:
- menstrual cramps that become more debilitating over time
- chronic lower back and pelvic pain
- painful sex
- painful bowel movements
One reason endometriosis causes these symptoms is that endometrial tissue engorges and bleeds every month, regardless of whether it’s in the uterus where it belongs, or not. The abnormal tissue growth and bleeding can lead to swelling and inflammation. Other symptoms of endometriosis include between-period bleeding and urinary and digestive woes, such as painful urination, constipation, diarrhea, bloating, and nausea.
One of the chief and most distressing effects of endometriosis is that it can make it difficult for a woman to become pregnant. Indeed, anywhere from 20 to 50 percent of endometriosis patients struggle to conceive. Growths can block fallopian tubes, cover or grow into ovaries, create adhesions that bind reproductive organs together, or form scar tissue that can render conception difficult. The brighter news: Once a woman does conceive, her symptoms often temporarily abate.
What causes endometriosis?
For years, doctors theorized that endometriosis was caused by “retrograde menstrual flow,” in which blood and tissue from the uterus flow out of the fallopian tubes and into the abdomen. But it’s now believed that most women experience at least some retrograde menstruation, and nine out of 10 won’t go on to develop endometriosis. Other possible causes include immune-system disorders, hormones, and a previous surgery to the abdominal area (during which endometrial tissue could be picked up and moved by mistake). And as mentioned earlier, the condition also has a strong genetic component.
Preventing and treating endometriosis
Although there is no surefire way to prevent endometriosis, certain steps appear to reduce the odds of developing it, namely by lowering estrogen levels to thin the uterine lining. These include using a hormonal birth control method like the Pill, patch, vaginal ring, depo-medroxyprogesterone acetate injection (Depo-Provera), or etonogestrel subdermal implant (Nexplanon). Exercise may also help, since women with a lower percentage of body fat have less circulating estrogen. In one older study published in the American Journal of Epidemiology, women who participated in high-intensity aerobic activity such as biking, jogging, or aerobics three or more times per week were 76 percent less likely to have endometriosis.
Additionally, mothers who breastfed their babies had significantly lower chances of later developing endometriosis, according to an analysis of data from the Nurses’ Health Study II by researchers at Boston’s Brigham and Women’s Hospital. The longer the duration of breastfeeding, the greater the risk reduction.
If you suspect you might have endometriosis, talk with your doctor. The condition is often diagnosed through a combination of a pelvic exam and imaging tests such as an ultrasound or MRI—though the only way to definitively diagnose endometriosis is with laparoscopic surgery and biopsy of endometriosis lesions. Surgical diagnosis is not commonly recommended, however, since the treatment for endometriosis is focused on the symptoms, and usually medical management is offered first.
If you are diagnosed with endometriosis, options for relief do exist. Here are some of the main ones:
- Hormonal contraceptives. This option may be worth trying if symptoms are mild to moderate and you aren’t planning to become pregnant soon. Hormonal contraceptives include the methods mentioned above as well as hormonal (not copper) intrauterine devices.
- Gonadotropin-releasing hormone agonists. For women who also do not want to become pregnant immediately, this is a type of prescription medication that stops the body from making the hormones responsible for ovulation, the menstrual cycle, and the growth of endometriosis. This treatment causes a temporary menopause, but it also helps control the growth of endometriosis. Your menstrual cycle returns once you stop taking the medication, but you may now have a better chance of getting pregnant.
- Over-the-counter pain medication. Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil and Motrin) or naproxen (Aleve) may help relieve mild symptoms.
In addition, women may find that limiting their intake of alcohol and caffeine helps ease symptoms. Some women also report finding relief from complementary therapies such as acupuncture or certain dietary supplements, but there is less evidence to support these.
In severe cases, surgery may be considered. The most common procedure is minimally invasive laparoscopic excision surgery, in which a surgeon locates and removes the endometriosis patches, including the iceberg-like structure beneath each lesion’s surface. (For more information on excision surgery, visit the Endometriosis Foundation of America.)
Some women, like Dunham, opt for the more invasive option of a hysterectomy to remove the uterus; but many women who undergo this procedure will still continue to experience pain, according to the Endometriosis Foundation. Additionally, if the ovaries are also removed, it may possibly increase the risk of heart disease: Research by the American Heart Association found that women with endometriosis, especially those age 40 or younger, were three times as likely to experience heart attacks, chest pain, or substantially blocked arteries compared with women who didn’t have endometriosis. The researchers suggested that surgical treatments that include removing both ovaries may account partly for this increased risk, since they induce early menopause.
Also see IUDs May Reduce Cervical Cancer.