Since she was 14, chronic pain in Lisa Collins' life had become the norm. So much so, the Sunnyvale, California 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 would continue for Collins until she was in her early 40s when she was finally diagnosed with endometriosis -- a condition doctors say remains largely mysterious despite seriously 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."
Endometriosis is a commonly misdiagnosed disease that affects at least 6.3 million adult and adolescent women in the U.S., 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 common disease is characterized by painful periods and bowel movements as well as difficulties with urination during periods and pain with 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 under-diagnosed and under-treated, and it can go on for years. It's more like torturing the patient more than killingthem," said Cook, the founder of Vital Health Institute in Los Gatos. "It's a huge health care problem that needs to be addressed because there is severe pain and suffering. This is a travesty and injustice to women."The only definitive means of diagnosing the disease is through obtaining tissue, usually through a minimally invasive surgery called laparoscopy, and sending it in 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 visualized. 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."It's more like if you got up in the morning and the bed sheets are all messed up and there's a quarter in there. It's easy to miss it," said Cook. "There are folds and tissue and the bowel gets down in there. You've got to basically pull the bed sheets straight and make sure you see everything."As a result, a woman can wait more than nine years before being diagnosed with endometriosis, according to a survey of 4,000 North American women conducted by the Endometriosis Association.
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," said Keogh. "I could barely get up to get [my son] to school. I wanted my son to have a mom."Discouraged with physicians and resigned to their pain, both Collins and Keogh experienced a period of time in which neither woman sought help. The pain would continue, wreaking havoc on not only the women's physical, but mental health.Keogh recalls that the pain would remind her of the trauma of being raped when she was 4 years old."I can remember lying awake at night after the rape in dire agony," said Keogh. "It was the same thing 25 years later where I couldn't do anything for the pain. It was just awful."Collins remembers that the worst day of her experience with endometriosis was after surgery in which the doctor said nothing was found. Collins, who was 24 at the time, started to consider whether the pain was all in her head.
"He said, 'We didn't find anything. It's good news.' In that moment, I thought, 'Maybe I am crazy'," said Collins through tears. "I was expecting him to find an answer, not even a cure, for why sex was hurting; why walking was hurting; why I was feeling so exhausted.Just a few years ago, both women, however, found relief with Cook who was able to diagnose and treat their endometriosis with laparoscopic surgery. Keogh's disease had spread from her pelvis to her abdomen.Cook says the cause for endometriosis is unknown although theories exist, which include genetics and environmental factors like dioxin, a common synthetic toxin. Treatment includes not only surgery, but 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 in San Jose and Palo Alto. Adamson is also an expert on endometriosis.Cook and Adamson note that each physician has their own means of treating the disease.Collins still experiences long-term effects from the disease, including muscle spasms and infertility. But she is grateful to Cook for the "peace" she has found with her disease.Like Collins, Keogh believes better understanding of the disease has allowed her to take charge of her overall health. She now sports a tattoo of a lotus and yellow ribbon on her left arm that symbolizes her overcoming the disease."My advice is to educate yourself. Do a bunch of research on endometriosis," said Keogh. "Pain was a part of life. I hesitate to use the term save my life because I wasn't dying, but Dr. Cook saved my life."
