By Beth Levine
Medically Reviewed by Kacy Church, MD
Few gynecologists have the skills and training to diagnose or remove endometriosis — chances are, you will have to search for one who does.
There are too many stories of women with endometriosis who were undiagnosed or misdiagnosed for many years.
Latia Lee, age 39, of Islip, New York, suffered for 23 years with undiagnosed endometriosis, a chronic disease in which endometrial-like tissue grows outside the uterus on various other organs. “My ob-gyn made me think my severe, debilitating menstrual cramps were normal, so I stopped asking about them. I thought it was normal to have my entire life revolve around my cycle. I even had a lung collapse, and the pulmonologist just said it was spontaneous,” says Lee. When the other lung collapsed, Lee knew she had to advocate for her own care. She researched online and found that she had just about every single symptom of endometriosis.
More research brought her to Tamer Seckin, MD, the creator of the Endometriosis Foundation of America, who finally made the right diagnosis. “I felt validated that I finally had an answer,” Lee says with palpable relief.
Why the Delay in Diagnosis of Endometriosis?
While an estimated 10 percent of women of reproductive age are affected by endometriosis, it takes an average of 7 to 10 years from onset of symptoms to diagnosis, research suggests.
What gives? There are several problems. There's a shortage of endometriosis specialists, and general ob-gyns lack knowledge about and training in the disease. In fact, says Lora Liu, MD, an endometriosis surgeon at Seckin Endometriosis Center in New York City, “there is not yet an official fellowship for endometriosis surgery.”
If You May Have Endometriosis, Do Your Research to Find Proper Care
If you suspect that your symptoms are related to endometriosis, get thee to a specialist right away. There is no need to suffer for years with no diagnosis, a misdiagnosis, or improper care.
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