How Stigma Is Preventing Women From Seeking Endometriosis Help

iStock

Thanks to athletes who period-bleed during marathons and Instagram accounts that talk about the monthly event without embarrassment, the stigma around women’s periods has only just begun to shatter. So imagine the taboo that still exists for women who experience endometriosis — a condition that causes chronic pelvic issues (including painful periods and sex), infertility, and intestinal problems.

A new study in the American Journal of Obstetrics and Gynecology has identified menstrual and pelvic-pain stigma, along with a lack of awareness about endometriosis, as key factors that make women hesitant to talk about their symptoms and seek medical treatment. This is significant, considering that about 10 percent of women of childbearing age have endometriosis, in which tissue from the lining of the uterus (the endometrium) grows elsewhere in the body, such as in the ovaries, fallopian tubes, outer surface of the uterus, lining of the pelvic cavity, bladder, or bowel.

It takes an average of 7 to 12 years from the onset of symptoms to diagnosis, largely because the cause is unknown and the gold standard for diagnosis is invasive — surgery to identify abnormal tissue growth. The study, conducted by the Society for Women’s Health Research, ID’d this lack of noninvasive diagnostic tests as one of the big obstacles regarding endometriosis care. Limited treatment options are also an issue. Beyond surgically removing tissue, the main way to deal with endometriosis pain is via meds that suppress the growth of lesions. But these treatments aren’t successful in all women – and can’t even be attempted in those trying to conceive. Even drastic measures like hysterectomy may not take care of the problem, as endometrial tissue can regrow elsewhere in the body.

Moving forward, the researchers say that endometriosis care should focus on improving the quality of women’s lives and, if necessary, involve a team of experts: health care providers who specialize in minimally invasive surgeical options (laparoscopy), medical management, pain education, physical therapy to help with back pain and improve blood flow, and psychological care.