I’ve got 35 years of history with endometriosis, 23 and counting of which have been spent immersed in research, clinical education, advocacy and fighting for better policies surrounding the disease. I’m honored to serve as the Surgical Program Director of the Center for Endometriosis Care, where I’ve been for a decade. I’ve sat on the Board of the Endometriosis Research Center since 1997 and have consulted to some of the leading organizations in women’s health. I routinely teach clinicians, nurses, healthcare workers, students, legislators, media and society about endometriosis to increase awareness and expand fundamental pathways towards better diagnosis and management.
None of this matters, however, more than the fact that I too am a woman who has experienced Stage IV endometriosis, 'frozen pelvis,' adenomyosis, leiomyoma and primary infertility.
My experiences with the disease began early on, even before my first period. At a time that was supposed to be the most socially and academically engaging, I missed so much. In the late 80s, the 10th doctor on the diagnosis train finally told me my symptoms were real and ‘it might be endometriosis.’ A 9-hour, hip-to-hip laparotomy later, I was validated: stage 4 disease. The devastating news that I would never have children and needed a hysterectomy dealt a blow, but life went on...
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