Since she was 14, chronic pain in Lisa Collins' life had become the norm. So much so that the Sunnyvale, Calif., woman started to believe that the sudden stabs of pain that would leave her collapsed on the bathroom floor might be all in her head.
The chronic pain continued for Collins until she was in her early 40s, when she was finally diagnosed with endometriosis — a condition doctors say remains largely mysterious despite affecting millions of women.
"It is insidious in how it erodes your life," said Collins, who is now 48. "I had some of the worst pain ever. Even the vibration of walking was sending me over."
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Endometriosis is a commonly misdiagnosed disease that affects at least 6.3 million adult and adolescent females in the United States, according to the Endometriosis Association. It occurs when the tissue similar to the lining of the uterus is found elsewhere — usually in ovaries, fallopian tubes, abdominal lining, bowel and bladder — which can cause chronic pelvic pain. Additionally, the disease is characterized by painful periods and bowel movements as well as difficulties with urination during periods and pain during sex.
Dr. Andrew Cook, who has been treating this disease for nearly 20 years, believes it's time for an endometriosis awareness movement to be taken up by physicians and women.
"It is underdiagnosed and undertreated, and it can go on for years. It's more like torturing the patient more than killing them," said Cook, the founder of Vital Health Institute in Los Gatos, Calif.
The only definitive means of diagnosing the disease is by obtaining tissue, usually through a minimally invasive surgery called laparoscopy, and sending it to a lab for further evaluation. Laparoscopy involves passing a telescope through a small incision beneath the belly button so that pelvic organs can be seen. Suspicious findings associated with endometriosis might be identified through a pelvic exam or ultrasound.
Even with surgery, however, endometriosis is difficult to diagnose because it can take on different colors and shapes and can be hidden.
As a result, a woman can wait nearly a decade or longer before being diagnosed with endometriosis, according to a survey of 4,000 North American women conducted by the Endometriosis Association.
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This was true for both Collins and San Francisco resident Lillyth Keogh, 33, who was diagnosed with the disease after many years of pain. Keogh spent most of her adolescence missing school because of the "crippling" pain she experienced with each period. She spent years floating from doctor to doctor, only to have her symptoms misdiagnosed or treated with medication that was of little help.
"I was a walking bag of pain," Keogh said. "I could barely get up to get (my son) to school. I wanted my son to have a mom."
Just a few years ago, however, both Collins and Keogh found relief with Cook, who diagnosed and treated their endometriosis with laparoscopic surgery.
Cook says the cause of endometriosis is unknown; one theory holds genetics to blame, while others cite environmental factors such as dioxin, a common synthetic toxin. Treatment includes not only surgery, but also pain medication and hormones, because endometriosis is a hormone-dependent disease.
"I always try to do the least invasive thing first. If the person is presented with pain, we first give them pills, and see if that works. If it doesn't work then we talk about other things (including) a laparoscopy," said Dr. David Adamson, the director of Fertility Physicians of Northern California and an expert on endometriosis.