Correction: An earlier version of this article referred to Kathryn King as Kathryn Pederson.
It is hard for Christina Paruag to believe how much she has missed out on because of endometriosis.
Paruag, 26, was diagnosed with the chronic disease when she was 18, but she reported having persistent lower abdominal pain since the age of 8. At 11, her condition was misdiagnosed as a hairline fracture on her hip, she said.
Then, at 12, she started menstruating. The pain was excruciating.
“That’s when I realized, ‘Okay, this wasn’t normal,’” said Paruag, a wellness entrepreneur and patient advocate who lives outside Toronto. “I’d be literally rolling on the ground at school and everyone would say, ‘What’s wrong with you? Just take Tylenol or Advil. You’ll be fine.’”
Throughout her teen years and early adulthood, the pain was constant. Even when she wasn’t menstruating, Paraug said, she’d vomit, have migraines or experience flu-like symptoms. She missed friends’ birthdays and routine hangouts, nor was she able to drive, cook or clean.
“It took over a lot of my life,” she said.
Frustrated by the treatment she was receiving in Canada, Paruag fundraised money to get laparoscopic surgery in the United Kingdom last year — the procedure has long been considered the gold standard in diagnosing endometriosis, and has also been used to relieve some of the worst symptoms by removing damaged tissue from the body.
Endometriosis affects 1 in 10 women globally, resulting in chronic pain that can be difficult to manage, and has been associated with infertility (about 25 to 50 percent of endometriosis patients are infertile). But despite the prevalence of the disease, diagnostic and treatment tools are limited, and there is still no cure.
The condition is associated with the uterus because the tissue is similar to endometrial tissue, found inside uterine walls. While endometriosis is most common in the lower abdomen or pelvis, this diseased tissue can actually grow on every organ in the body.
During her surgery, Paruag said, doctors discovered she had advanced endometriosis, finding damaged tissue in her bowels, bladder, diaphragm and lungs.
But recently, U.K. researchers say they believe the surgery may not be as effective as previously thought in relieving symptoms — and could actually worsen pain for some endometriosis patients.
“The role of surgery in endometriosis treatment is often misunderstood,” said Meredith Loveless, the head of the clinical document review panel for gynecology at the American College of Obstetrics and Gynecology.
“The main purpose of surgery is for a definitive diagnosis of endometriosis by tissue biopsy,” Loveless said. “While treatment from destruction of visible lesions may provide temporary relief, it is not long-standing, and without medical treatment we expect pain will return.”
She noted that for one strand of endometriosis — in which painful cysts form in the ovaries — relief may not be possible without the surgery. But “other than those circumstances,” she said, “I never considered surgery the treatment, but rather one component in multiple strategies to treat the condition.”
The news about laparoscopic surgery — first reported by the Guardian — caused a stir among endometriosis patients and advocates online, Paruag said.
Surgery could worsen pain, experts told the paper, especially if patients have damaged nerve endings. After an excision surgery, when surgeons remove diseased tissue, they often slice through some of the nerves that have grown inside the endometrial lesions, which can exacerbate symptoms for patients, depending on the kind of endometriosis they have.
“There were so many mixed comments, people saying, ‘Okay, maybe I shouldn’t have surgery,’ and other people saying, ‘Oh, don’t spread misinformation,’” said Paruag, who is “extremely satisfied” with her treatment — and is fundraising so others who have had difficulty finding or affording excision surgery can get the procedure.
“It’s hard because there’s already so much misunderstanding within the community,” said Paruag. Often, endometriosis patients rely heavily on their own research so they can better advocate for themselves, she added.
“We tend to be coming with pages and pages of research, which I know the doctors don’t like,” she continued. “But it’s the only way because we have to take our health into our own hands with this condition.”
Kerry-Anne Perkins, an OB/GYN working in New Jersey, said the challenge is that endometriosis is a cellular, “microscopic disease” — and imaging tests might not be effective, depending on the kind of endometriosis a person has.
When she posts about endometriosis, there is a “strong response” from people who suspect they have it, and from those who have a diagnosis but still need help understanding their disease.
“They’re yearning for knowledge, they’re yearning for help. They’re yearning for relief from pain and the condition as they suffer from it,” she said.
This isn’t just on the patient side either.
“Health-care researchers are still grappling to understand the disease more,” Perkins said. She sees a significant need for better diagnostic tools, so doctors can identify patients earlier.
Kathryn King, 25, has been waiting for years to confirm an endometriosis diagnosis.
King, who lives in Bristol, England, waited two and a half years after reporting her severe period pain before seeing a gynecologist, who said she suspected King has endometriosis. But she didn’t recommend a laparoscopic surgery to confirm the diagnosis because King was also trying to get hormonal contraception, which is considered a treatment for the disease.
“I still don’t have an official diagnosis,” said King. “I feel so invalidated by it.”
King believes the reluctance to recommend her for surgery comes down to a lack of funding — and deeply ingrained misogyny in medical research.
“I genuinely do think that if [endometriosis] was an issue with men’s health, it would have been researched decades ago and the funding would be there,” she said. “And it just isn’t.”
According to a 2019 Guardian article, less than 2.5 percent of publicly funded research in the United Kingdom is dedicated solely to reproductive health.
And in the United States, even though the country is a global driver in medical research, the National Institutes of Health didn’t require women to be included in research trials until 1993. Before then, researchers deemed women’s bodies too complicated to be studied, because of their fluctuating hormones.
But Loveless, of ACOG, is hopeful that an interest and advocacy in endometriosis could spur more research funding.
“A delay in diagnosis, often for years, is not uncommon or acceptable,” she said, especially because early diagnosis and management can reduce the damage it causes to the body.
One growing area for research, she said, is getting an accurate and effective diagnostic blood test, which could reduce the need for surgery. There is also a need for more effective treatment options specific to different variants of endometriosis.
“There has been little change in treatment in the 20 years I have been in the field,” Loveless said. “One of the challenges is a full understanding of the disease process, which is needed to target effective therapies.”
Perkins emphasized that in order for treatment to be effective, it must be personalized. When a patient who suspects they have endometriosis comes to see her, she collects their history and conducts a pelvic exam — to make sure there isn’t another issue at play, like fibroids or an enlarged uterus, she said.
She often has to educate patients that it isn’t normal to have debilitating pain from their periods.
“The good news is that we are continuing to do research to try to understand the process better,” she said. But, she added, people with endometriosis need more help.
“These patients suffer for decades and decades and decades. They undergo surgery sometimes seven, eight, nine, 10 times — still searching for relief.”