Discovering the future of women’s health care

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Endometriosis Research Study Newsletter  |  Spring 2014

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Lindsay Murphy asks herself the same question every night. “Did I talk to someone about endometriosis today and can I talk to two more tomorrow?"  This may seem out of the ordinary, when you consider the number of priorities that we pack into our lives. But for Lindsay, this is her number one priority. In July 2013, Lindsay, her better half and their three dogs sold almost everything they owned and purchased a truck and a fifth wheel. She was determined to get the word out about endometriosis, and felt this could best be accomplished traveling the country, speaking to anyone who would listen. It wasn’t long before she noticed that a lot of yellow had infiltrated her wardrobe. Even though she jokes, “yellow isn’t a good color for my complexion,” still she makes sure everything that she wears is adorned with a yellow ribbon. But she doesn’t stop there. Her RV and laptop are both decked out with yellow ribbons. Along the way Lindsay readily distributes her business cards that read, "I'm that woman you met with Endometriosis." You see, Lindsay wants others to know that, like them, she struggles with the debilitating day-to-day symptoms and emotional cost that endometriosis brings, she understands them!

Lindsay wasn’t always the “woman with endometriosis.” In fact, she had good health through adolescence. “I never had a stitch, broken bone, trip to a hospital.” Her only medical encounters were annual exams with her OBGYN. A strong family history of ovarian and breast cancer, as well as anemia and fatigue attributed to her menstrual cycle, Lindsay started birth control pills when she was twelve years old. Twenty years later, she transitioned to the Mirena IUS at her OBGYN’s suggestion. Although her body adjusted well initially, four years later she started experiencing UTI-like symptoms and questioned her decision. Tests for infection were repeatedly negative, and a trial of antibiotics did not improve her symptoms.

Lindsay would not get any answers until August 7, 2011, the day her world changed. Doing laundry that day, Lindsay was suddenly felt light-headed and nauseated.  A piercing pain on the left side made her fall to her knees. Within hours Lindsay was hospitalized and being prepped for emergency surgery. Upon waking from a seven-hour operation, Lindsay prepared herself for news of either breast or ovarian cancer.  But instead, her surgeon said,  "You had a 7cm endometrioma leaking into your abdominal cavity. We had to remove your left ovary and Fallopian tube plus put a stent in your ureter because it had collapsed from inflammation. We also performed an ablation of your uterus and lasered all the stage four endometriosis that we could see. You should find an endometriosis specialist ASAP to get that taken care of." Lindsay “only had 5 simple questions:  Endo What? Endo How? Endo When? Endo How? Endo Why? I am supposed to get breast cancer or ovarian cancer, not something I have never heard of and know nothing about!"  To date, Lindsay has undergone four additional surgeries and requires a separate medical day-planner to keep track of her never-ending doctor appointments, urine and lab work. She still can hardly believe she is a postmenopausal, pre-osteoporosis, stage 4 thoracic endometriosis patient, in what is supposed to be the “prime of her life.”

Despite these daily debilitating endometriosis symptoms, Lindsay keeps going. She does not want another woman to wake from a seven-hour surgery to learn that she, too, has a disease she has never heard of.  “I want to get to a point where no one ever has to say, "Endo What?" When someone hears “cancer,” they at least have an idea what that is. “Endometriosis is so misunderstood, we have a long way to go until it's understood by the masses.”  Lindsay plans to reach the masses through her support of endometriosis organizations.  She currently serves as a precinct manager for the Million Women She plans to launch her own endometriosis awareness website.  However Lindsay’s main “vehicle” to reach the masses is driving her yellow ribbon-decorated, five-wheeler around the country, starting up conversations about endometriosis and passing out business cards that read, “I’m the woman you met with Endometriosis.”

Lindsay Murphy: “The Woman

You Met With Endometriosis”