Lauren Willis had hoped her chronic pelvic pain would end with the removal of a grapefruit-sized cyst from her ovary. But just a month after the surgery, she was hurting so much she could barely walk.
Her doctor said it was due to endometriosis, a condition where endometrium -- tissue that normally lines the inside of the uterus and is shed during the menstrual period -- exists elsewhere in the body. The errant tissue can cause pelvic pain, as well as affect fertility.
Willis was treated with ablation, a minimally invasiveprocedure that aims to destroy endometrial tissue by burning or coagulation but in two months, the pain was back.
The next approach was hormonal suppression. "Depo-Provera made me bleed too much,'' she says, "so they tried 'medical menopause' and I didn't have a period for seven months. They put me on 12 different kinds of birth control pills. Nothing worked. I felt really sick."
Another surgery was done to repair adhesions in her intestines, bladder, ovary, and uterus caused by the endometriosis, which had continued to advance.
"My uterus was stuck to my spine," Willis says. "They had to cut through scar tissue to detach it." Even then, her pain would not abate. "I'd be in bed for days. It felt like something was ripping my insides out."
Further ablations brought only temporary relief, and continued hormonal therapy came with unwelcome side effects: "I gained 35 pounds in three weeks." Ultimately, her doctors advised Willis, then age 22, to "have a child by 25, if you’re going to. Or get a hysterectomynow."
The procedure is minimally invasive, requiring only a keyhole incision through the navel and two small incisions below the bikiniline. Patients generally go home the same day and can expect to return to work in a week or two.
After the surgery, all the removed tissue is then sent to pathology, so that the patient can get a definitive diagnosis. The average length of time between onset of symptoms and definitive diagnosis of endometriosis is an astounding 12 years.
Doctors at the Duke Center for Endometriosis believe excision to be superior to ablation in the treatment of endometriosis. Unpublished data, from the Center for Endometriosis Care in Atlanta, Ga., suggests a very low rate of recurrence with excision -- less than 10 percent, compared to more than 50 percent recurrence with ablation, after five years.
Willis had the laser excision procedure in mid-March 2009, and when the two-month mark passed without pain, she began to have confidence. "I'm feeling great," she says today.
"Before, I'd have had another surgery by now." Almost worse than the pain had been the loss of hope that things could get any better. "My first doctor told me, 'You’re just a baby; it's not that bad.' It's really sad because you feel horrible, but you have to keep pressing to get to what's wrong."
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