Since she was 14, chronic pain in Lisa Collins' life had become the norm. So much so, the 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 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."
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.
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, 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."
Difficult to diagnose
The only definitive means of diagnosing the disease is through 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.
"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," Cook said.
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.
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."
Discouraged with physicians and resigned to their pain, both Collins and Keogh stopped seeking help for a time. The pain would continue, wreaking havoc on not only the women's physical health, but on their mental health as well.
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."
Just a few years ago, however, both women found relief with Cook, who was able to diagnose and treat their endometriosis with laparoscopic surgery.
Cook says the cause of endometriosis is unknown, although 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, said David Adamson, director of Fertility Physicians of Northern California in San Jose and Palo Alto. "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."
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.
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," Keogh said. "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."
Endometriosis: What to watch for
What it is: The growth of endometrial tissue, which normally lines the uterus, in other places as well, especially the fallopian tubes, ovaries and the tissue lining the pelvis.
Symptoms: Painful periods; pelvic pain; excessive bleeding; infertility
Risk factors: Never having given birth; diagnosed in one's mother; menstrual cycles shorter than 27 days, bleeding longer than eight days; being white or Asian.