The year was 1969, Eve was 13-years-old and experiencing her first period. She was in horrible pain. Her mother, never having a painful period, thought Eve was just trying to get out of school. Google did not exist. There were no online chat rooms or Facbeook groups that Eve could turn to. Bill Gates and Steve Jobs were still in high school at the time. Eve relied solely on the medical advice of doctors to help her figure out what was wrong. By the time Eve was 18, her pain was more intense. Eve searched for a gynecologist who could explain her horrible pain. This new doctor Eve found dismissed her saying, “Oh, it’s nothing,” but Eve knew something was wrong.
By her early 20s, Eve started experiencing a lot of diarrhea, in addition to her pain. She started feeling worse and worse. She found another doctor and after explaining her entire medical history to him, he did a sonogram. The sonogram showed that Eve had a cyst. At age 23, Eve had laparoscopic surgery to get the cyst removed. Her doctor told her she should now be feeling great.
But Eve wasn’t feeling great. To be able to endure the pain, Eve sought the comfort of two heating pads and relied heavily on naproxen. The year was 1980, and there was very little discussion about endometriosis and next to no awareness for the disease. She happened to come across Dr. Seckin, a young gynecologist working in Brooklyn, by chance. She started seeing him at the age of 25 and together they started working on her pain management and trying to discover the root of her pain. From the start, she felt he was warm and caring. Dr. Seckin made her comfortable. He believed her pain was real and wanted to know the cause.
Dr. Seckin decided to go in laparoscopically when Eve was 28. He discovered a cyst and finally diagnosed Eve with endometriosis. Eve continued under the care of Dr. Seckin and together they navigated this disease for over a decade. She had three more surgeries with Dr. Seckin, her last one at age 41.
By the age of 45, Eve started missing periods. By the age of 48, Eve had lost her period completely and welcomed menopause. Menopause has brought her great relief but she still suffers from the occasional bought of diarrhea and leg cramping. She has found eating gluten-free helps her intestinal symptoms. Looking back, Eve ponders whether the radical hysterectomy her paternal grandmother had was related to endometriosis.
Eve feels that Dr. Seckin is a superb doctor. She gives him a tremendous amount of credit for wrapping his entire life around the research and treatment of endometriosis, spending most of his waking hours working with patients and researching it. She feels frustrated with doctors who do not keep up with the latest and most effective treatments and diagnostic tools.
Eve also talks about the loneliness she felt as a young woman growing up with the disease. She felt like she was the only person in the world who had it. She urges young women to use all of the online resources available to them. She also stresses that women should listen to the message their body is sending them, despite what doctors may say or the symptoms they may dismiss. She urges women to keep searching for answers, to take their lives back, no matter what the price.
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