Call for education and research: Spokane City Councilwoman Kate Burke, panelists advocate focus on endometriosis

Health care professionals believe 1 in 10 women have endometriosis, a disorder that can go on for years before being diagnosed.

Endometriosis occurs when tissue – similar to the tissue lining the inside of the uterus – grows outside that organ. The endometrial-like tissue can cause severe pain – especially with menstrual cycles – and sometimes infertility and organ dysfunction because of inflammation, impact on body structures and scar tissue.

While symptoms vary, other signs include heavy bleeding, painful sex, nausea, bloating and pain with bowel movements and urination. It can impact the ovaries, fallopian tubes and tissue lining the pelvis, but it’s sometimes found elsewhere in the body.

“It’s a disease that affects 10% of all women,” said Dr. Adam Duke, a surgeon and endometriosis specialist in Post Falls. “We think there are genetic factors, possibly environmental factors.”

Spokane City Councilwoman Kate Burke, 32, lived with symptoms such as heavy, painful periods and fainting for years until diagnosed in April 2020. She and other local women shared their stories on a March 18 Facebook Live event to help others recognize signs.

They’ve formed an online advocacy group, PNW Endo Warriors, and are calling for endometriosis research, self-advocacy and patient education.

Several women on the panel shared frustrations that endometriosis can be missed or misdiagnosed.

“I definitely had signs of endometriosis in high school, and I didn’t want to go to school because my cramps were so bad,” said Burke, who said it has affected her life in many ways. “It’s been one of the reasons I decided not to run for reelection.”

Finding answers is frustrating. “They actually don’t know much about endometriosis,” she said. “There’s not a lot of research behind it.”

Burke said her symptoms improved somewhat after June when Duke did laparoscopic excision surgery to remove affected tissue. She finds other relief from physical therapy, an anti-inflammatory diet and reduced stress. The pressure is on now to consider children, she said.

Nancy’s Nook, started by an Oregon nurse for endometriosis education, is among groups recommending that women ask about excision surgery to cut out the tissue at the root. That differs from ablation, a surgical technique to destroy – or burn – the surface of lesions.

“The research shows if you burn endometriosis, the recurrence rate of pain is somewhere at 80% to 100%,” said Duke, who did an OB/GYN residency, then a two-year minimally invasive gynecologic surgery fellowship. “If you cut the disease out, or excise it, the recurrence rate of pain is 10% to 20%.

“Even the best endometriosis surgeons in the world still can’t guarantee they’re going to get rid of it completely – that’s why we say there is technically no cure because there is always a chance of recurrence. But 10% to 20% is a lot better than 80% to 100%.”

He said myths include that hormone treatments alone work, that a hysterectomy is always required or the removal of ovaries. “By definition, endometriosis is outside of the uterus, and it’s not endometrial tissue; it’s similar to it.”

Amelia Alberts, 33, suffered about 20 years with endometriosis that affected relationships. Eventually, she had to quit an emergency dispatcher job because of severe symptoms.

“You can’t physically see our disease,” she said. “There are days you can do your work, days you can’t get out of bed, days you’re literally bent over.”

Her mom had severe endometriosis. Alberts often missed school and had digestive issues. By college, the pain was constant. Doctors who suspected endometriosis suggested birth control pills, but that made her feel worse. Then after her marriage, her health took a nosedive, she said.

“I was sick all the time, whether digestive or just constant pain.”

She bounced from digestive doctors to monthly ER visits. An ablation surgery brought a month’s relief, “then it came back 10 times worse.” One excision surgery removed a small amount of the problem tissue. She then heard her only options were to get pregnant or take a drug called Lupron to bring on an induced menopausal state, she said.

“Taking Lupron was the worst time in my life; I was in excruciating, full-body pain,” said Alberts, who also had adenomyosis. “I couldn’t perform my job.”

Alberts said relief finally came after two surgeries by Duke in 2019, the first removing endometrial-like tissue from her bowels, bladder and diaphragm and removal of her appendix that had died because it was closed off by lesions. Another surgery removed a uterine polyp and “a bit more endometriosis.”

She improved her diet, hormone levels and a thyroid condition with a naturopath. After longtime infertility, Albert gave birth to a son in November.

Tara Ramos, 39, won’t be able to have children.

About three years ago, her endometriosis was confirmed after infertility issues. Ramos also had adenomyosis and inflammation of the bladder because of endometriosis on it, she said. Ablation surgery didn’t help.

“It made it way worse,” Ramos said. Specialists later told her the outside of her uterus “was completely diseased with endo; it was like strangling my colon.”

Ramos eventually went to a Gig Harbor endometriosis specialist, Dr. Cindy Mosbrucker, to have excision surgery.

“I had surgery with her just over eight weeks ago, and I’m pain-free, endo-free. I no longer have a uterus or fallopian tubes. I had to have a full hysterectomy at 39.”

“I had been suffering since I was a teenage girl, but I thought it was normal.”

A Spokane resident and Inupiaq enrolled member, she believes women of color face obstacles being believed about pain and are sometimes judged as “drug seekers.” Her pain had worsened daily by her 20s.

“By the time I was 35, it was horrendous pain every day,” she said. “I wanted to die every day, like literally. In fact, I did try to kill myself the summer before I got in to see Dr. Mosbrucker. That’s how horrible this disease is.”

She sees similar messages in online support groups, “probably once or twice a day, we see somebody say, ‘I want to give up.’ “

She said women need to educate themselves early and that the disorder isn’t easy to diagnose without surgery.

“If I’d been diagnosed when I was younger, I could probably have had kids.”

Ramos does have children at home, a niece she’s raised and her husband’s children. Now, her energy is back.

“I’m so excited about life, knowing the kind of experiences I’ve had because of endo makes me a stronger, smarter person and definitely somebody who knows I can work through anything life has to throw at me.”