5:30 - 5:50 pmSaturday, September 26
LK 130
The sisterhood of the traveling endometrial tissue
LK 130
The sisterhood of the traveling endometrial tissue
Medicine X ePatient Delegate
A piece that I wrote for The Huffington Post was picked up by the American Society for Reproductive Medicine, and I think that it is a great anecdotal introduction to the reality of living with endometriosis.... Read more

Description

A piece that I wrote for The Huffington Post was picked up by the American Society for Reproductive Medicine, and I think that it is a great anecdotal introduction to the reality of living with endometriosis. I have written and researched chronic pain — particularly as it relates to endometriosis—as an independent writer, journalist and scholar and feel that Medicine X would be a prime platform to begin having this discussion. Endometriosis, at present, has no cure. It is chronic, progressive, likely linked to autoimmune disorders and can quite malevolently rip a woman of her fertility. At times, without her ever being aware that it's happening. 

Current research can't seem to arrive at a consensus about exactly how endometriosis occurs, and why, and thus science and medicine have reached somewhat of an impasse in trying to find a cure. Through advocation and awareness, I would hope that we will see an increased interest by the academic and medical community in the decades to come. With the advent of new technology, procedures and our ability to review and analyze population data, as a patient and a scholar, I remain hopeful.

That all being said, as an endometriosis patient I became an active participant in my own healthcare, often learning and creating hypothesis and treatments right alongside the medical professionals. By truly embracing patient-centered care and shared decision making, I was able to arrive at a diagnosis nearly a decade earlier than is the average for a woman suffering from endometriosis. If more women had the resources and, more importantly, the support of a community, to do this as well, I imagine it would make a world of difference in their treatment and, perhaps eventually, the search for a cure.

After the piece I wrote ran, I received a barrage of emails from women and men, all of whom were grateful that someone had finally given them a voice. Daughters wrote that they shared it with their mothers, wives shared it with their husbands and many, many women brought it to their doctors. A characteristic of endometriosis symptoms is that, often, they vary from woman to woman and even within the same woman depending on where she is in her cycle, but the overarching theme of the piece resonated deeply with so many. I was so moved and humbled. I still regularly get tweets, Facebook messages and emails from women and men around the world who share their stories with me. I am not a scientist, a doctor or a researcher by trade, but I am a woman with a voice — and I'll continue to speak out until endometriosis rolls easily off the tongue of every woman and man in the world. I don't know what the cure is, but it's not silence. 

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