Millions of Endometriosis Patients Mistreated; Similar Quality of Life as Cancer Patients

By Sarah Shultz

A new book by Dr. Andrew Cook, MD, FACOG, promises to shed light on endometriosis – a widely misunderstood and misdiagnosed disease. In “Stop Endometriosis and Pelvic Pain,” Cook explains what endometriosis is, why proper treatment is scarce, and how best to treat it. He also focuses on validating women’s feelings of pain that many doctors, as well as sufferers’ family members and friends, treat lightly.

Endometriosis (or endo for short) occurs when endometrial cells fail to leave the body when a woman menstruates and instead travels back up the fallopian tubes and implant themselves onto other areas in the pelvic region. It’s somewhat like having dozens of painful blisters adhered to the outside of organs inside the pelvis. Once punctured, the cells create scar tissue that sometimes adheres itself to adjoining organs. This can cause severe pain, especially during menstruation and sex, and is also a cause of infertility.

Experts are not sure exactly what causes endometriosis, but Dr. Cook said that genetics and environmental factors play a part. Over 5.5 million women in America are affected with endo; a staggering number considering its relatively unknown status.

Dr. Cook wrote “Stop Endometriosis and Pelvic Pain” to get the word out about this disease. He sees two main problems with current medical thinking: patients and those around them underplay the severity of endo, and doctors are not trained enough to adequately treat it.

“Young girls are told that cramps are normal part of having periods. Mild cramps can be, but the severe cramps that go along with endo, that prevent people from doing daily things, that’s not normal. Then there’s a lack of awareness by a lot of physicians and a delay in getting to the doctor. So once they get to the doctor they treat it incorrectly,” Dr. Cook said.

Doctors will often prescribe women a birth control pill, and if they manage to see the need for surgery, they are hesitant to perform surgery on younger women. Also, Dr. Cook said, “They don’t believe how bad the pain is.” Women are perceived to be unnecessarily complaining, when in reality they are probably covering up most of their symptoms in a refusal to let them take over their lives.

Dr. Cook sees a huge discrepancy in treatment of women with endo. For one, he says that other diseases this complex have their own subspecialty while endo does not. “OB/GYNs are treating this to the best of their ability, but not how it best needs to be treated,” Dr. Cook said.

Endo often slowly gets worse over time, eventually taking a toll on every area in a woman’s life. Relationships, work, and intimacy are interrupted while women are left being unable to plan anything for fear of when their pain will strike.

In effect, said Dr. Cook, “Chaos is created where a woman can’t even trust her own body.”

To give an idea of how completely women with this disease are affected by it, women with cancer and women with endo report a similar quality of life. On average, it takes 12 years for a woman to be diagnosed with endometriosis from when her symptoms first began.

“So you have this horrible disease, and I think in some ways most people just don’t believe it. They think it couldn’t be this bad, but it really is,” said Dr. Cook. “They go to the doctor and receive a number of treatments, but it’s only partially treated. Then the patients are getting blamed when in reality the treatment’s not getting done properly.”

In the book, Dr. Cook says he believes that women with complex health problems deserve to be treated compassionately and with respect. He focuses on treating the problem, then the overall health of the patient.  His treatment plan is different from others in his use of excision and vaporization of endometriosis, which he believes is the best way to remove all of the disease and prevent it from returning.

Endometriosis is a treatable disease, and women with symptoms should not give up hope in finding relief. To sum things up, Dr. Cook said this about endo: “It’s mind boggling how many women are out there in the kind of pain they are, with any number of things they’re being told it is – it’s just a travesty. It’s incredible that in our modern society this many women are being treated incorrectly.”

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