“Continuous pain that is draining me of my life force” — that’s how Lena Dunham recently described her endometriosis symptoms during a visit to the emergency room. If you’re a fellow endometriosis sufferer, or know someone who is, that probably sounds pretty accurate. Here’s what you need to know about the painful condition:
What endometriosis is
Endometriosis is condition in which tissue from the uterine lining grows outside the uterus, like on the ovaries, the peritoneum (a membrane that lines the abdominal cavity), the spaces between the bladder, the rectum, and the intestines. Just as your uterus sheds lining during your period, so too do those other organs when you have endometriosis — causing bleeding into those areas, an inflammatory reaction, scar tissue, and blood-filled cysts. The symptoms include: period pain that doesn’t go away even with the help of painkillers, periods that last more than seven days, periods that are super heavy (requiring a pad or tampon change every two hours), nausea, vomiting, constipation, diarrhea, and pain with urination, bowel movements, and sex.
There’s also an infertility connection. Researchers think up to 30-50 percent of women with endometriosis may experience infertility, as scar tissue can block the fallopian tubes, inflammation can damage sperm or an egg, and there may be damage to the ovaries. It’s estimated that one in 10 women of reproductive age have endometriosis, but your odds are about sixfold if you have a family history of it.
The long road to diagnosis
Research shows that it takes an average of over nine years to diagnose endometriosis. About half of that time is due to a delay in endometriosis sufferers seeking help, and the other half of the delay is on the part of the physician. The major roadblock? Accurate diagnosis doesn’t come from scans, blood work, or urine tests — it can only come from a surgical procedure.
“The only way to truly diagnose endometriosis is to perform surgery and visualize and biopsy endometriosis in a person’s pelvis,” explains Brett Worly, MD, an ob/gyn with The Ohio State University Wexner Medical Center. “Blood tests and ultrasounds do not definitively diagnose endometriosis in most cases. Because the diagnosis is made with surgery only in most cases, and surgery means additional risks for patient, pain, and recovery time, surgery is not the best first option.” Plus, many other issues can cause pelvic pain, pain with sex, and pain with periods, Dr. Worly explains. “Sometimes it takes some time to eliminate other potential causes and identify endometriosis as the cause.”
There’s no cure yet
There are treatments for both endometriosis and the fertility issues that may result from the condition — but no cure yet. It’s important to get diagnosed quickly if you suspect you have endometriosis. While nonsteroidal anti-inflammatory drugs (NSAIDs) are prescribed to treat pain symptoms, hormonal treatments like birth control pills can actually help slow the growth of the endometrial tissue — but they usually can’t reduce the endometriosis tissue that’s already there. Sadly, even surgery to remove the endometrial tissue is often only a short-term solution, as 40 to 80 percent of women have pain again within two years of surgery.
It’s important to address your mental health
When talking about endometriosis, the focus is (understandably) often on the painful physical symptoms. But the mental health component is just as important. More than three quarters of those with any chronic pain report feeling depressed, 70 percent have trouble concentrating, and 86 percent reported having trouble sleeping. Women with pelvic pain also have higher levels of stress. Even productivity at work is affected — research shows that symptoms cause a productivity loss of about 11 hours a week.
Don’t hesitate to get help. “There [is] substantial benefit to patients with pelvic pain seeing a psychologist or therapist early in their diagnosis of pelvic pain, particularly if it has been going on for six months or more,” says Dr. Worly. “Patients are unfortunately reluctant oftentimes to see a mental health professional due to social stigma, but I will often encourage patients to consider this step.”