By SHAUNA K. PEARSON
More women worldwide are being affected by a serious disease that is now the leading cause of infertility — and they may not even know it, say scientists at Endohelp.
Endometriosis may not be detected until it is too late because of misdiagnosis and minimal public awareness, they said. This leads to unnecessary hysterectomies at an early age.
Endo is characterized by abnormal uterine tissues that have formed outside the uterus. These bleed inside the pelvic cavity with each period, which in turn makes scar tissue (adhesions), causing severe pain and distortion of the anatomy.
Adhesions are scar tissue that form where there is bleeding as the body tries to heal itself.
“Adhesions can make a real mess of your insides,” said Carey Blondin, 28, who has had endometriosis since she was 14. “If two parts of the anatomy are bleeding from endo lesions like the bladder and the uterus, then the body sees them as one structure and tries to `heal’ them, but they get stuck together during the healing process.”
She points out that endometriosis is a disease. She said it may not kill someone physically, but it kills the woman she once was. It kills a person mentally, it eats the insides and it damages silently while the person looks fine on the outside, she said.
“It’s been around a long time,” said Dr. Andrew Cook, a specialist in endometriosis. “It is probably underdiagnosed because it has many different appearances. It can look like just about anything.”
He said until the mid-1980s most residency programs taught that endometriosis was black. Now, doctors recognize endometriosis is not pigmented, so a surgeon must be very systematic in looking for endometriosis.
According to Cook, common symptoms of endometriosis include progressive pains with periods and bowel movements, as well as bowel changes during periods, leg pain and pain during intercourse.
He said on a scale of one to 10, with ten being the most intense pain, the pain can reach a 10 on a regular basis.
“Usually, it starts with the period, but it can progress until it’s constant,” Cook said.
Many women suffer for a long time without ever knowing the cause.
“I’ve suffered from this disease ever since I can remember,” said Terry Calvillo, 25, from Guatemala City. “However, I was diagnosed six years ago; it’s a very common disease among women, but few doctors really know how to treat it.”
She said she has always had strong pains during her period; she even had permission to miss school during the first two days of her cycle. She was put on birth control pills at the age of 17, resulting in migraines, mood swings and pain during her cycle.
“I was tired all the time. My energy levels decreased immensely and the pain wasn’t only during my cycle anymore,” Calvillo said.
After threats of a hysterectomy, several surgeries to remove the endometriosis and an inordinate amount of pain, Calvillo had surgery from Dr. Cook.
Cook said there is a still a chance the endometriosis will return because there is not a cure to ensure the endometriosis is gone.
“I had endometriosis in my uterus, in my bowel, in my urethra, in my intestines, all over my left side and right ovary,” Calvillo said. “It’s incredible how much this disease can affect your life.”