Frustrated endometriosis patients fuel surge in activism while seeking answers

From the beginning, April Hutcheson's monthly periods were heavy and excruciating. Family doctors and school nurses told her it was normal.

"Sophomore year in high school, I would pass out," recalled the 44-year-old Mechanicsburg resident. "They're like, 'Oh, you just want to get out of school. Take some ibuprofen and you'll be fine.' "

She was 24 when she was finally diagnosed with endometriosis, a disorder in which the endometrium — tissue that normally lines the inside of the uterus — grows outside that organ. The displaced tissue commonly implants on the ovaries and fallopian tubes, but sometimes on the bowel, bladder, rectum, or even beyond. This can cause disabling pain, organ dysfunction, and infertility.

An estimated 1 in 10 women, 176 million worldwide, suffers from endometriosis. Yet the disease remains an enigma, and surveys show diagnosis is typically delayed by an average of seven years, largely because awareness is lacking.

That may finally be changing. Recently, "endo" has been the subject of a surge in activism, fueled in no small part by the frustration and candor of women such as Hutcheson.

"We need to be open and not embarrassed," said Hutcheson, director of communications for the Pennsylvania Department of Health. "We need to talk about the pain, without stigmatizing or minimizing it, like, 'It's your time of the month.' "

There have been many high-profile, outspoken endo sufferers, including Susan Sarandon, Hillary Clinton, even Marilyn Monroe. But the new generation of activists wants  change, not just support. Padma Lakshmi, cookbook author and host of TV's Top Chef, cofounded the Endometriosis Foundation of America seven years ago to push surgical training and research as well as advocacy. Last month, the documentary Endo What? – billed as "More than a film. A movement" – premiered in New York City, a triumph for lawyer-turned-filmmaker Shannon Cohn, whose own diagnosis took more than a decade. This month, endo patients held a protest outside the Washington headquarters of the American College of Obstetricians and Gynecologists to "address the endometriosis care crisis."

The movement has some surprising allies. Republican U.S. Sen. Orrin Hatch of Utah lamented his granddaughter Emily's "heartrending" struggle with chronic pain in an essay published last month by CNN.com.

"Let's work together so we can drive the conversations, medical practices, and research priorities that will help deliver a better future for our loved ones, free from the pain and suffering of endometriosis," Hatch urged.

During a woman's monthly menstrual cycle, hormones signal the endometrium to thicken. If there is no fertilized egg to launch a pregnancy, the blood-rich lining is shed.

The leading theory about how this goes awry in endometriosis is called retrograde menstruation: The endometrial tissue flows back through the fallopian tubes into the pelvic cavity. But there is also evidence that bone marrow stem cells or abdominal cells can transform into endometrial tissue. And studies have found endometrial lesions in such distant sites as the lung and the brain, suggesting the blood or lymph system may serve as a transporter.

In any case, displaced endometrial tissue still responds to normal hormone cues, building up and breaking down each month. But because the trapped tissue can't drain from the body, it triggers inflammation, forming cysts, blockages, and fibrous scars that can make pelvic organs stick together.

Even with ultrasounds and other imaging, endometriosis may be mistaken for – or occur along with – other conditions that cause pelvic pain such as irritable bowel syndrome. That's why the definitive diagnosis requires minimally invasive surgery, called laparoscopy, to get a tissue sample that can be analyzed under a microscope.

"That's the only way to know for sure," said Karen Tang, a Philadelphia obstetrician-gynecologist who specializes in laparoscopic surgery and pain management of endometriosis.

When menstruation stops, either temporarily because of pregnancy or permanently because of menopause, symptoms of endometriosis subside. But this is a generalization. Tang said a colleague in Indiana recently posted that he was finding endometriosis in postmenopausal Amish/Mennonite women, suggesting that rare, unidentified genetic mutations may play a role.

In most cases, endometriosis can be managed with pain medication, hormonal drugs to control or suppress menstruation, and periodic laparoscopic surgery to remove as much of the abnormal tissue as possible. But each treatment comes with limitations and downsides.

Hutcheson, for example, relied for years on such massive doses of ibuprofen, the over-the-counter anti-inflammation painkiller, that she damaged her kidneys. She had a "stockpile" of prescriptions for tramadol — an opioid that was once incorrectly believed to be less addictive than other versions – but fear of getting hooked kept her from filling them.

"I have zero patients on opioids," Tang said. "But a lot of patients [in other practices] end up taking it because they're desperate."

Mindy Kline, 39, of Yardley, rejected opioids for another reason. The painkillers cause constipation, which intensified the bowel problems caused by her endo.

"I would take sleeping pills or Benadryl," she said. "It would daze me enough to get through the day."

Birth control regimens are a first-line treatment. By switching from one formulation to another, some women keep the pain in check.

"For six years, birth control made a huge difference. I felt like a normal person," said Kline, a part-time ESL teacher. "Then the pain slowly creeps up and comes back."

Both Kline and Hutcheson tried leuprolide injections, which block production of ovary-stimulating hormones. That shrinks endometrial tissue – but plunges the patient into what feels like menopause.

"I couldn't function," Kline said. "I had massive night sweats all night long."

And both women have had multiple laparoscopic surgeries. These operations, which are performed with scopes and instruments inserted through small incisions, can be very challenging for the surgeon, who may have to remove part of the colon, Tang said.

"I have a lot of scar tissue from the laparoscopic surgeries," Hutcheson said of her five operations.

Tang, who treated Kline, almost always prescribes an alternative therapy that many physicians are unaware of: pelvic floor therapy. A specially trained physical therapist uses massage, dilators, and other techniques to gently stretch muscles tightened by chronic pain.

"I use a multidisciplinary approach, because there isn't one treatment that will fix everything," Tang said.

That fact may ultimately lead women to consider the most radical, controversial treatment option: hysterectomy.

Even for a celebrity who has raised awareness of endometriosis, Lena Dunham's move was brave. In an essay in the March issue of Vogue, the creator and star of the HBO series Girls revealed that intolerable pain had driven her to have a hysterectomy at age 31.

"I made a choice that was never a choice for me, yet mourning feels like a luxury I don't have," she wrote. "I weep, big stupid sobs."

Because she had always dreamed of having children, she preserved her ovaries in hope of harvesting eggs. That implied she might try in vitro fertilization and a gestational surrogate. She also called adoption a "thrilling" possibility.

"I know a hysterectomy isn't the right choice for everyone," she wrote. "That it's not a guarantee that this pain will disappear."

Her soul-baring confessional drew a mix of condolences – and criticism. Even though she didn't portray hysterectomy as a cure, some experts and activists faulted her for feeding misconceptions.

Removing the uterus alone will not eliminate painful endometrial lesions outside the uterus, or the hormones that signal the abnormal tissue. But as with everything about endo, it's complicated. Eliminating menstruation often brings pain relief. And removing the uterus is the only way to fix a related condition called adenomyosis, in which endometrial tissue grows into the muscular wall of the organ.

Kline, who has two children, recently opted for another laparoscopic surgery rather than a hysterectomy, only to have Tang find hardly any endometriosis – and evidence of adenomyosis.

Hutcheson, who also has two children, had her uterus out two years ago, and has no regrets.

"It took me six months to recover," she said. "But I'm virtually pain-free and that's remarkable, because I never knew an adult life without it."