A national survey to learn more about endometriosis has been launched in the United Kingdom. The survey is being conducted by researchers at the University of Liverpool‘s Institute of Translational Medicine and the universities of Edinburgh and Oxford.
Endometriosis is a painful chronic disease that affects around two million women in the U.K., at least 6.3 million women and girls in the U.S., and millions more worldwide. It occurs when the tissue that lines the uterus (the endometrium) grows outside this organ — usually in the abdomen, ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity.
Other sites for endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly, they are found in the lung, arm, thigh, and other locations.
The main symptoms of endometriosis are pelvic pain, painful periods, pain during intercourse, and difficulties in getting pregnant. The causes of endometriosis remain poorly understood and diagnosis requires invasive surgery. However, available medical and surgical treatments can cure the condition.
“The aim of the survey is to provide us with information on what people think are the most important areas to focus our research on,” Dr. Dharani Hapangama, clinical senior lecturer and consultant gynecology surgeon, said in a news release. “We want to hear from the women suffering with endometriosis; their partners; families; friends and loved ones; healthcare providers and professionals; and employers to understand what are the most important unanswered questions about this condition.
“With this information, we can prioritize the top 10 questions, and then focus our research to find answers to them,” Hapangama said.
“Endometriosis can be a difficult condition to deal with, both physically and emotionally. Charities such as endometriosis.org, Endometriosis SHE Trust UK and Endometriosis UK can offer advice and support to help you cope,” Hapangama said.
More information on the survey, which is hosted by The James Lind Alliance, can be found on endometriosis.org.