Diagnosing endometriosis — a condition in which endometrial-like tissue grows outside the uterus on other organs, such as the ovaries, fallopian tubes, bowel, and outside walls of the uterus — is no easy matter. While an estimated 10 percent or more of women of reproductive age are affected by endometriosis, it takes an average of 4 to 11 years from onset of symptoms to diagnosis. The result? Women spend unnecessary years in debilitating emotional and physical pain and poor quality of life.
The reasons for the delay are varied: The disease is not on physicians’ radar; patients accept the pain as normal or are embarrassed to discuss symptoms with a professional; reported pain is not taken seriously by clinicians; symptoms can be mistaken for other disorders; and there is no simple screening process. The current gold standard for diagnosis is laparoscopic surgery, in which the surgeon inserts a laparoscope into the abdomen and pelvis to look for and biopsy suspected lesions, and the procedure requires anesthesia. The situation is so serious that the Society for Women’s Health Research put out a call to action in early 2019.
Is There a Way to Prevent Delayed Diagnosis Without Surgery?
Scientists at the Feinstein Institutes for Medical Research at Northwell Health in Manhasset, New York, are conducting research into a method that may ultimately provide earlier and noninvasive diagnoses — in some cases before symptoms even start. “A lot of women get dismissed and told it’s all in their head, which can be emotionally frustrating and physically traumatic. An early diagnostic would help so much to eliminate that,” says Margaret DeFranco, RN, the senior research nurse on the study.
Menstrual Blood Cells May Be Key to a New Diagnostic Test
Scientists leading the ROSE Study (Researchers OutSmart Endometriosis) are studying how to diagnose endometriosis by analyzing menstrual blood. “We are seeing striking differences in these cells derived from menstrual blood: the stromal cells, cells found in certain connective tissues, are very aggressive in patients with endometriosis, impairing the natural process whereby the uterus gets ready for implantation,” says DeFranco.
Early Endometriosis Diagnosis Is Important
There is currently no cure for endometriosis; symptoms can only be managed. “Early diagnosis leads to early treatment. Treating endometriosis in its early stage prevents it from spreading to other organs. It increases a woman’s chance of getting pregnant and prevents unnecessary hysterectomies. It saves her years of suffering from debilitating pain that would have affected all aspects of her life. The bottom line is that the sooner you know about this disease, the sooner your journey toward healing can begin,” says Tamer Seckin, MD, the founder of Endometriosis Foundation of America (EFA), who is also part of the ROSE research team. The EFA helped seed the study.
Wanted: Women With and Without Endometriosis to Participate in Study
Currently, the ROSE study has enrolled about 500 women with endometriosis and 100 without, including those with symptoms who have not yet been diagnosed. (Women without the condition are needed for a control group.) But in order to gain U.S. Food and Drug Administration (FDA) approval for the new test method, the team, led by Peter Gregersen, MD, and Christine Metz, PhD, needs many more participants to replicate their findings. “We would like to have from 2,000 to 5,000 participants,” says DeFranco.
How to Learn More and Sign Up for Clinical Study
Women should be age 18 or older, and from anywhere in North America, including Alaska and Hawaii. You will be asked to send a blood sample of menstrual flow via a new collection method for which the study is also seeking FDA approval, a unique menstrual collection pad. (Previously, collection was done by a menstrual cup, which some women with the chronic disease found too painful to use.) You will be given a FedEx label and packaging for free mailing.
Signs and Symptoms That Suggest Endometriosis
If you think you have the condition, see a gynecologist or an endometriosis specialist soon. Here are the symptoms to watch out for, according to the EFA:
Pelvic pain, especially right before and during menstruation
Painful sexual intercourse
Pain during bowel movements or urination
Diarrhea or constipation; bloating
Heavy or prolonged menstrual bleeding
Neuropathy of the lower limbs
Find more information on the study at the website for the research arm of Northwell Health. Intrigued? Fill out and submit an interest form for the ROSE study.