Young women with endometriosis are having difficulty finding appropriate care because many doctors aren’t recognizing the symptoms of the disease, according to a recent article in the New York Times.
Endometriosis is taught to health care professionals as a disease that affects women of reproductive age, and these professionals are often not looking for signs and symptoms of endometriosis in much younger women. The chronic pelvic pain associated with some types of endometriosis often gets mistaken for menstrual pain in teenagers, and associated symptoms such as back, bladder, or bowel pain are more likely to be treated independently by medical specialists instead of recognized as endometriosis symptoms.
According to the Endometriosis Association, endometriosis affects an estimated 6.5 million women in North America, and up to 89 million women worldwide. For some women, it can take a decade or longer to receive a diagnosis.
“Health care professionals need to start recognizing chronic pelvic pain symptoms in younger women.”
This article features a story of a very young woman who was told her eggs were not viable at the age of 22, and that she needed a hysterectomy. Her case is an extreme example, but it highlights a larger problem in the care of these women.
While younger girls and women are being told their chronic pelvic pain is normal, they are also increasingly talking to one another. They are discovering websites with information and stories about endometriosis. Most of all, they are realizing that they are not alone, their pain is not normal, and that there are places they can go to get help.
Fortunately, we know what we need to do for these women at our center. The first step is to find a specialist who understands the symptoms of endometriosis. The specialist needs to be capable of diagnosing endometriosis and performing the appropriate excisional surgery. After surgery, specialists should also recognize these women can never get a menstrual cycle again. Endometriosis is a chronic disease. These women cannot continue to have cycles of hormonal activity because once they have undergone surgery, pain symptoms will recur within three to four months.
We are starting to see more young women visiting our center with stage one or two endometriosis accompanied with severe pain symptoms. If you examine patients with chronic pelvic pain using laparoscopy, you will find that their peritoneum—the wallpaper of their pelvis—doesn’t necessarily look abnormal. While they may have a minimal amount of visible endometriosis, the amount does not equal the severity of symptoms. The peritoneum looks tight and fibrotic, and contracts against the organ systems in the uterine cavity. This contraction is responsible for many seemingly unrelated symptoms of endometriosis, including back pain, anterior thigh pain, bladder symptoms, and bowel symptoms among others.
Patients with stage three or four endometriosis have a different kind of endometriosis. It is just as severe; however, they do not usually have chronic pelvic pain. We still see these patients and treat them at our center, but they are usually surprised to find that we excised an extensive amount of endometriosis during surgery because many are asymptomatic.
As a reproductive endocrinologist, my job is to help these women make good decisions about their future fertility. The surgical treatments we perform at our center are fertility preserving, which is incredibly important to young women who have not yet decided whether to have children. Hysterectomy should not be offered to these young women as a treatment option because it effectively closes the door for any options of having children in the future.