It’s not just a “painful period” -- that’s what endometriosis sufferers would like others to know. Those with the disease experience an agony that is hard to understand.
"It's hard because some doctors will say 'oh it's just cramps' but when you really think about it, severe cramps aren't normal," says 25-year-old Fargo resident Kayla Bauske. "When you can't go to school or work because of the pain, it's not normal."
Approximately one in 10 women are affected by endometriosis during their reproductive years, according to endometriosis.org.
Alicia Heit, a 29-year-old Valley City resident and endometriosis sufferer, experiences cramps and flu-like symptoms that keeps her from work.
“I sometimes take eight pills a day to feel ‘normal’,” Heit says.
Heit was diagnosed with endometriosis in December 2016 during a laparoscopic surgery; this minimally invasive surgery is necessary to diagnose the chronic disease. Currently no cure exists for endometriosis.
“Endometriosis is a big fancy word for when the endometrium cells that are normally in the cavity of the uterus travel outside of it,” says Sanford OB/GYN Dr. Jon Dangerfield.
The endometrium cells attach to other organs in the body, sometimes causing severe pain. For some, endometriosis will cause debilitating cramps before and during their menstrual cycle. Pain during intercourse, bowel movements, urination or excessive bleeding could also signal endometriosis.
“Of those patients that we have a strong suspicion of endometriosis, we only find it 60 percent of the time,” Dangerfield says.
Bauske first experienced intense pain on her left side at 14 years old, yet it took five years and three different doctors to confirm her endometriosis diagnosis.
“When I was 14, they tested for an ectopic pregnancy and did an ultrasound,” Bauske says after she continued to inform her doctors of her continuous pain.
At 16 years old, Bauske’s chiropractor tested her saliva. The results showed her estrogen at the same level as a premenopausal woman.
Endometriosis’ exact cause is not known although high levels of estrogen in the uterus are associated with the disease.
At 19, Bauske was finally diagnosed with endometriosis when a doctor was suspicious that her pain could be due to an ovarian cyst. During her first laparoscopic surgery the endometriosis was confirmed when they removed scar tissue from her small intestine.
Two years after Bauske received her diagnosis, her sister Jessica Anderson had a laparoscopic surgery.
“My sister and I had the same thoughts the day before the laparoscopies, ‘What if they don't find anything? What if there is nothing there?’ ” Bauske says.
The Bauske women are evidence of what some doctors are seeing clinically.
“My radar for endometriosis goes up if a patient mentions that an immediate family member has the disease,” Dangerfield says.
Bauske’s mother, Shelly, experienced the family’s most severe case of endometriosis when she was transported to the emergency room in 2015 after her lung collapsed due to endometrial scar tissue buildup in her small intestine. During Shelly’s emergency surgery, six inches of her small intestines were removed.
Shortly after this incident, Bauske endured her second laparoscopic surgery to remove scar tissue; she agreed to the procedure quickly after seeing what untreated endometriosis did to her mother’s health.
Laparoscopic surgery is used to diagnose and treat simultaneously. With robotic technology, doctors like Dangerfield are able to remove endometrial cells and scar tissue from two small incisions: one usually hidden in the belly button and the other just above the hard pubic bone around the bikini line.
“The procedure generally takes five to 10 minutes to diagnosis those who have small amounts of endometriosis,” Dangerfield says. “With advanced endometriosis, it can take a couple of hours.”
After the surgery, a patient is usually fully recovered between three to seven days.
Left untreated, endometriosis can lead to infertility and the removal of the ovaries. Some women with endometriosis will experience severe pelvic pain like Bauske or Heit; others will have no symptoms until issues like infertility are found later in life.
“Often our patients with the most pain have a ‘peppering’ of endometriosis cells; sometimes those with significant disease will be asymptomatic, having little to no pain,” Dangerfield says.
When asked about how she and her family deals with endometriosis day-to-day, Bauske has a simple answer.
“I just deal with the pain because that’s life,” Bauske says. “We hope for the best and try to help each other deal with any complications as they happen.”