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Endometriosis patients grapple with canceled operations because of coronavirus

"While endometriosis surgery is considered elective, many others like me do not feel that this surgery is 'optional,'" one woman said.

For years, Alexandra Clem struggled with severe pelvic pain, migraines and a heavy menstrual cycle without understanding why. It wasn't until last summer when she was diagnosed with endometriosis and learned that would need to have surgery to treat it.

Clem, 24, was gearing up for a second operation March 17, but it was canceled just a day before because her surgeon was being tested for the coronavirus.

"Having my surgery canceled was absolutely devastating," Clem said in an email. "While endometriosis surgery is considered elective, many others like me do not feel that this surgery is 'optional.'"

Clem and an untold number of other women in the U.S. had operations scheduled to treat endometriosis that were postponed because of the coronavirus pandemic.

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Endometriosis is an incurable female reproductive disease that causes the tissue lining the uterus to grow outside it and in other areas of the body, including the fallopian tubes, the bladder and the bowel, according to the U.S. Office on Women's Health. It affects more than 6 million women in the U.S. and can cause chronic pain, bleeding or spotting between periods, digestive problems and even infertility.

Endometriosis is classified in four stages from minimal to severe based on the "location, amount, depth and size of the endometrial tissue," according to Johns Hopkins University.

"It impacts so many aspects of women's life, from their daily work productivity to their interpersonal relationships with others and their loved ones, husband, boyfriends, parents," said Dr. Tamer Seckin, an endometriosis specialist in New York.

"Somebody's normal pain is another person's emergency room visit," he added, noting that every endometriosis patient's experience is unique and that pain thresholds vary.

"It's like this backlog of women's health, both of pain and fertility, that is, I think, one of the silent sufferers of the epidemic," said Dr. Erin Carey, chief of the division of Minimally Invasive Gynecologic Surgery at the University of North Carolina School of Medicine.

Elective procedures have been postponed in many states to help hospitals handle the influx of coronavirus patients. But Carey said many elective procedures are quality-of-life procedures, including many gynecologic operations.

"It's a real issue, and I think that none of us have the right answer," she said.

For Gabrielle Bynum, 35, endometriosis is a battle she's fought for more than 15 years. Since she was a teenager, Bynum said, she struggled with symptoms, including severe abdominal pain. It took four years for her to get diagnosed and to start treatments.

"That's the part of you that you always felt was going to make you a woman or make you a mom, and it takes a lot out of you," Bynum said. "You lose who you are. You lose yourself."

Because of her endometriosis, Bynum, who lives in New Jersey, was scheduled to have a hysterectomy May 5. But her doctor informed her last week that it was canceled because of restrictions on elective surgery.

Seckin, a co-founder of the Endometriosis Foundation of America, said he's had to cancel appointments for more than 20 patients in the past month, including some who were traveling from out of state.

"Reasonably speaking, I don't think they should think of a date to operate on these patients now," he said. "First, I think endometriosis patients should be aware of taking the right precautions not to get infected with coronavirus."

Gynecologic specialists stress the importance of endometriosis patients' focusing on their emotional well-being during this time of uncertainty when surgical treatments have been pushed off.

"No one is purposely trying to make their lives difficult by postponing this surgery," said Dr. Kathy Huang, director of NYU Langone Health's Endometriosis Center. "It's just the health system is overwhelmed."

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Many have said their procedures are postponed indefinitely, until doctors get a better sense of when they might be able to start performing operations again. Huang said it's hard to give patients a date, because there's no known time when the coronavirus pandemic will be under control.

Getting diagnosed with endometriosis can take 10 years on average, according to the Endometriosis Foundation of America, and it can take a significant mental, emotional and physical toll. With treatments being delayed, the situation can become even more draining.

"Being postponed and being canceled, it's heartbreaking for a lot of us," Bynum said.

She advised those going through a similar situation to take it one day at a time.

"If you feel overwhelmed, it's fine to feel that way," she said. "It's OK to feel upset. It's OK to actually feel kind of selfish, because you've waited so long and now you have to wait even longer."