We posted a request among the members of Nancy’s Nook to tell us the barriers to good endometriosis care they encountered. It garnered 250 rapid responses, powerful, angry, logical, expectant, perplexed, and wondering what is the matter with the industry and the failure to see the suffering, the cost, and the abandonment they feel.
- Delay in Diagnosis: Many wait 9+ years for diagnosis being told repeatedly it is just a bad period and painful periods are normal, suffering it so be expected. When questions are asked about possible disorders they are dismissed as foolish questions, which only the doctor knows.
- Knowledge of Endometriosis:Over and over they report their doctors do not know much about endometriosis, do not have any understanding of the disease beyond a few basic symptoms, so when the identify thoracic issues, or diaphragm or bowel issues they get dismissed as unrelated. Often they see other specialists who know even less about endometriosis pronouncing their symptoms psychological as no findings are present. (By now many of our patients know that diagnostic studies are often negative in endometriosis and poorly informed doctors make a leap to psychological issues due to their own lack of information about presenting symptoms of endometriosis in the face of classic endo symptoms). Patients report that suggestions about pregnancy, nursing, menopause, medically induced menopause will cure or control their endo. They are disappointed to hear this kind of misinformation from their doctors, nurses, NP’s and PA’s in this day and age. Attempts to share evidence based information is frequently dismissed, turned away accompanied by unpleasant dialogue about using the internet to educate themselves. Many report being treated disrespectfully by their doctors when they push for answers to their pain.
- Specialists in Endometriosis:Generally there are very few physicians who truly understand the disease, its true symptom profile, where disease may be found and who have a team to manage all aspects of endometriosis including the many extra pelvic options. Often to consult or consider surgery with an expert involves significant travel.