This article is published in collaboration with California Health Report.
At age 16, Paige Gibbons of Palo Alto, California, first began having the excruciating symptoms caused by endometriosis.
“I’ve had dysmenorrhea or painful periods,” she said. “I was blacking out, vomiting uncontrollably from pain, even with ovulation.” She spent her high school years in so much pain that she almost dropped out.
Twelve years later, she’s still waiting to have what’s often considered the most effective surgery to treat endometriosis—the delay a result of a long path to diagnosis and, now, lack of insurance coverage for the procedure that would give her the best chance for less debilitating pain. Gibbons has taken up to 20 Advil per day—more than the recommended maximum—to manage the condition.
Get the facts, direct to your inbox.
Want more Rewire.News? Get the facts, direct to your inbox.
Endometriosis occurs when tissue similar to the uterine lining travels outside of that pear-shaped organ to other body parts, such as the ovaries, fallopian tubes, or bladder. Experts aren’t sure exactly what causes endometriosis, but various researchers believe it could be linked to genetics, environmental toxins, consumption of red meat, and even childhood abuse. An estimated 10 percent of women between ages 15 and 44 have endometriosis, which may cause not only pelvic pain but also gastrointestinal distress, abnormal bleeding, and infertility.
On average, it takes women up to ten years to receive a diagnosis.
“I had given up on gynecologists,” said Gibbons, who waited seven years for her diagnosis. “They all told me I was being dramatic, and the pain was in my head, even though I would go to the ER all the time.”
Five years ago, Gibbons, now 28, found a gynecologist who listened. An ultrasound revealed that she had ovarian cysts, and surgery revealed that she had endometriosis. Now Gibbons, co-creator of the Uterus and the Duderus podcast about the disorder, is seeking a specialist in the field to perform the minimally invasive laparoscopic excision surgery.
Gibbons has gone without this gold-standard procedure because her Covered California health plan isn’t contracted with the appropriate surgeons. She can’t afford to pay out of pocket, as the surgery typically costs tens of thousands of dollars. Her endometriosis still leaves her in so much pain that she only works part-time as a child-care worker and lives with her parents.
Excision entails cutting off the lesions from the affected organs rather than simply burning off the top layer of endometriosis, which is what occurs in the widely practiced ablation technique. Medical experts say that ablation surgery may not be as effective as excision surgery because it fails to eliminate deep infiltrating implants, and the heat used during the process may damage the healthy tissue of the reproductive organs.
Although excision may be the best surgical treatment for some women with endometriosis, only a handful of doctors perform it in California, and those who do accept a select group of insurance plans or none at all. This has led women with endometriosis to travel to different parts of the state to get the treatment they need or even to leave California for surgery.
Gibbons tried ablation surgery twice and a continuous course of oral contraceptives to treat the condition. Yet the pain always returned.
Each woman responds differently to pain management and surgical treatment of the disease. More than a quarter of women who undergo excision surgery may have a recurrence of pain five to seven years after the procedure. That’s because there is no cure for endometriosis, and new growths may form over time. Cutting out the growths, however, may extend the time a woman lives without pain and make it easier for women with the condition to get pregnant, since the disease creates a toxic environment for eggs, sperm, and embryos.
It is, perhaps, cruel irony that Gibbons lives in the same city where surgeon Camran Nezhat runs his practice. Nezhat is one of the few excision specialists in the state and a pioneer of minimally invasive surgery to treat endometriosis. Gibbons hopes to become his patient one day. But neither he nor Andrew Cook, another nearby endometriosis specialist, belong to her insurance network.
Tam M. Ma, legal and policy director for advocacy group Health Access California, finds it troubling that women with endometriosis face barriers to treatment.
“Generally speaking, if you have health coverage, you’re supposed to be able to get a qualified specialist,” she said.
Jenniferasami Paden of Upland, California, knows from experience how hard it can be for patients to access the health care they need. Now age 30, Paden first developed symptoms of endometriosis as a teen. Exploratory surgery to determine the cause of her pelvic pain revealed that she had Stage 4 endometriosis, the most severe form.
Like Gibbons, she tried hormonal treatments, ablation surgery, and Lupon to alleviate her symptoms, but they didn’t work. Side effects from Lupron—including hot flashes, joint pain, and bone loss—actually increased her discomfort. In a bid to end her pain, Paden traveled two hours to Thousand Oaks, California, for surgery with a gynecologist who attempted to excise her endometriosis but found her case too difficult to treat, she said. He ultimately referred her to Nezhat, a six-hour drive away. But Paden, a pharmacy technician student with a small child, receives insurance coverage through Medi-Cal, which the doctor doesn’t accept.
“When you do have access to specialists, they’re not very good specialists, and their case load is overwhelming,” she said of her insurance coverage. Paden explained that she attempted to tell Medi-Cal representatives why she needs an excision specialist, but they’ve told her that her regular health-care provider should be able to meet her needs.
“I always thought I was getting best care every time I got surgery, but I found out I wasn’t,” she said, calling ablation surgery a “Band-Aid fix.”
Nezhat likened the technique to merely getting rid of the ashes of endometriosis while letting a fire rage beneath. In other words, he said, the disease “is not totally eradicated” in ablation surgery.
The doctor has treated patients with endometriosis from all over the United States in addition to Asia, Europe, and South America. He said that because medical schools don’t offer uniform training on excision, few doctors know how to perform the procedure. The gynecologists who do learn opt to take advanced training after finishing their residencies, he explained.
“It is very difficult to do properly,” Nezhat said of excision. “It is very dangerous. If the surgeon is not experienced, it will cut the nerve. It will get to the blood vessel.”
In addition to treating patients with the condition, Nezhat founded the Worldwide Endometriosis March and Worldwide Endometriosis Day to raise awareness about the illness.
Tamer Seckin, a veteran excision specialist in New York, has also turned to advocacy. He co-founded the Endometriosis Foundation of America and, like Nezhat, sees patients from all over the globe.
Seckin said that he became an advocate for women with endometriosis 25 years ago because he hated to see them in chronic pain. He explained that excising the disease can be preferable to burning it off because cutting the lesions eliminates the nerve connection.
“When you burn, you basically cause the nerves to be cooked,” he said. “That might cause additional pain.”
If no excision specialist belongs to a woman’s insurance network, Ma said they can appeal to see such a physician. If the insurance company declines, the California Department of Managed Health Care can conduct an independent medical review to determine if a particular treatment is medically necessary.
But “insurance companies tend to be hesitant to cover new treatments and new drugs,” Ma said.
Meghan Cleary of Los Angeles said she successfully appealed her insurance company to see Cook for excision surgery last year. In 2015, she had surgery to remove a uterine fibroid, and the physician detected endometriosis and ablated the lesions, she said. But Cleary, 45, still had troublesome symptoms, which included bladder infections, migraine headaches, and fatigue. But she’s enjoyed better health since visiting Cook.
Instead of intense pelvic pain, “now I have normal cramps, which I find super hilarious,” said Cleary, founder of the Bad Periods website. “Now I understand how someone could go running on their period.”
To present her case to insurer Blue Shield, Cleary said she completed a great deal of research and provided clinical documentation about her health problems from Cook and her primary care physician.
“My insurance, in the end, did the right thing,” she said.
In contrast, Jenneh Bockari of Los Angeles is suing her insurance company to get the expenses from her excision surgery covered. The 31-year-old not only had endometriosis on her reproductive organs but also on her diaphragm, known as thoracic endometriosis. She did not have pelvic pain, but two years ago she experienced increasing bouts of gastrointestinal distress, fatigue, brain fog, chest pain, and shortness of breath, she said. A diagnostic laparoscopy at the University of California, Los Angeles confirmed she had endometriosis. Her pain grew so intense that she left graduate school and her nursing job to go on disability for a year.
Finding no Los Angeles-area physicians who specialized in thoracic endometriosis, Bockari traveled to the Center for Endometriosis Care in Atlanta to receive treatment from surgeon Ken Sinervo. He found that she had “deep, infiltrating” endometriosis on her diaphragm and minimal lesions on her colon and in her pelvic area, Bockari said.
After the surgery, “my gastrointestinal symptoms immediately went away,” she said. “The biggest thing was my breathing. It didn’t hurt to breathe.”
Bockari has since returned to nursing but said she is still rebounding from being sick for so long. She also remains locked in a legal battle with her insurance company over her medical expenses.
“It’s a comment on how gender bias becomes institutionalized in the places that we look to for health care, to take care of us,” Cleary said. “I think it’s a travesty for women.”