Illustration by Cathryn Virginia

Living with Endometriosis, an Agonizing Disease with No Known Cause or Cure

For most of her life, Chloe has struggled with debilitating periods. When she was 25, she finally went to the hospital. It took four years to diagnose her. Why won't doctors take menstrual pain seriously?

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Jul 27 2017, 4:00pm

Illustration by Cathryn Virginia

Since she was 11, Chloe Pudwill has struggled with debilitating menstrual periods. In middle school, she would wear red-and-white checkered pants to hide the stains when she inevitably bled through her pads. She remembers doubling over at her desk in pain during class, and the one useless trip she took to the school nurse—in agony, an adolescent Chloe described her symptoms. The nurse left the room and returned with the only relief she could offer: a single ibuprofen pill.

Faced with the little pill, overwhelmed with her pain and her shame, Chloe began to cry. A boy was sitting in the hallway outside. The nurse got up and closed the door.

It wasn't until she was 25 that Chloe realized something was seriously wrong. It was the spring of 2013, and she was living in San Francisco. One night, she agreed to go to a vaudeville show with a friend; she'd experienced some cramps earlier in the day, but decided to ignore them because she didn't want to seem flakey. At the show, however, the pain intensified. She started to have trouble breathing. The room blurred. She knew then, she says, that "something drastic was happening."

She told her friend she was going to the hospital and flagged down a taxi outside. Lying down in the backseat, she asked the driver to get her to the nearest emergency room. The driver took her straight to San Francisco General.

The average wait-time to see an E.R. doctor at SF General is 33 minutes, but on this busy Saturday night Chloe waited alone for almost two hours. Clutching her jacket as she vomited into a bucket, she thought she was dying. "I was just so alone, and in so much pain, and so scared," she says. "So scared."

At one point, desperate, she crawled off the bed and shuffled out of her curtained alcove. The nurses at their station had their backs to her. She hesitated. What could she say when they turned around? How could she explain that these weren't just menstrual cramps? What if she was making a fuss about nothing?

What if she wasn't?

Endometriosis is a painful, chronic disease that affects one in 10 women of reproductive age worldwide, according to the World Endometriosis Society. The condition occurs when tissue similar to the endometrium, the lining of a woman's uterus, appears in other areas of the body. It's most commonly found in the abdomen, around the reproductive organs, and in the pelvic cavity.

Outside the uterus, this tissue continues to behave like womb lining, thickening, breaking down, and bleeding during each menstrual cycle. But the tissue has no way of escaping the body. Instead, it develops into growths, often described as lesions, which cause the disease's most common symptoms: extreme pelvic pain, heavy menstrual bleeding, and infertility. Over time, the disease can progress as inflammation causes scar tissue and adhesions to build up around the lesions, "webbing" organs and muscles together.

Endometriosis is an invisible disease. Its symptoms exist on a spectrum and its severity is measured in stages, which describe the number and depth of lesions—but often these have no correlation. A woman with Stage 1 endometriosis may experience pain that leaves her bed-bound, according to Heather Guidone, the surgical program director at the Center for Endometriosis Care, while a woman with Stage 4 may not even know she has the disease. There is no known cause, and there is no known cure.

Chloe has often looked back on that night in the hospital with anger and confusion. "It's not like a broken arm," she says of the disease. "It's so hard to get the doctor to understand your pain. I think that it's so engrained in our knowledge that female menstrual pain is a normal, regular facet of life, that when we have women coming to the E.R. saying, 'My menstrual pain is really bad, something is wrong,' [the doctor's] automatic response is going to be, 'This is normal.'"

Medical professionals treating women's pain differently from men's is not a new phenomenon. Recent articles, such as Joe Fassler's chilling account of his wife's trip to the E.R., provide anecdotal evidence of the "pain gap" between women and men, but a wider trend is backed up by academic research. A 2001 study, "The Girl Who Cried Pain," asserts that men are more likely to be given medication when they report pain to their doctors, while women are more likely to be given sedatives. Women are also "more likely to have their pain reports discounted as 'emotional' or 'psychogenic' and, therefore, 'not real.'"

Chloe, who has never read the report, echoes the same sentiment: "It's almost like this engrained belief that women can't understand that their pain is normal. Like we're not smart enough to get it."

The premise that women's understanding of their bodies is fundamentally unreliable, and centered in a mental rather than physical infirmity, can be traced back to antiquity. "Hysteria"—from the Greek, hystera, "uterus"—was believed to afflict women since the times of Plato. During the industrial era, symptoms as varied as anxiety, fainting, insomnia, nervousness, and sexually overt behavior could have a woman diagnosed with the condition, which was believed to be caused by a weak mind. The recommended treatment was motherhood.

Today, "hysteria" as a diagnosis has been retired to the history books. But lingering prejudices are harder to dispel. "Women who seek help are less likely than men to be taken seriously when they report pain and are less likely to have their pain adequately treated," researchers reported in 2001. Fifteen years later, Frank Tu, director of gynecological pain at NorthShore University HealthSystem, told Quartz some physicians are still taught that for women suffering severe pelvic pain, a prescription for ibuprofen "should be good enough."

When the E.R. doctor arrived, she performed a pelvic exam and a scan on Chloe's abdomen. The scan showed possible cysts on her ovaries, so Chloe was given a referral to an OB/GYN specialist along with a prescription for pain medication.

Over the next few weeks, Chloe visited the OB/GYN several times. Because of her continuing pain, which her new medication did little to alleviate, she couldn't go back to work even though she knew her boss was close to letting her go. But her doctor was attentive and persistent, aware that Chloe's pain did not match up with the diagnosis of ovarian cysts. On her third visit, her doctor said she might be dealing with endometriosis. Chloe had never heard of the condition before.

In the US, it takes a woman with endometriosis an average of nine years to be diagnosed. Canada, Germany, Spain, Italy and the UK also have comparable wait times. Why so long? The reason lies in a bitter cocktail of culture, conditioning, and lack of concrete answers.

"Some of it's medical, and some of it is to do with wider society," says Dr. Jenny Johnston, an academic GP at Queen's University, Belfast. On top of gendered responses to women and pain, she says, talking about the disease involves discussing a plethora of taboo subjects: sex, menstruation, and fertility.

And while the disease is undergoing a boom in research, little of this helps current patients. Asked what more we have to learn about the disease, Guidone of the Center for Endometriosis Care laughs wryly. "We still don't have a single, universal, agreed-upon cause for the disease, which may lead us one day to prevent it," she says.

Studies have shown that relatives of women with endometriosis are five to seven times more likely to be diagnosed with the condition, suggesting there is a genetic component to the disease. Other research has discovered the presence of endometriosis in fetuses—meaning women may be born with the condition, which is activated during puberty when estrogen levels increase and endometrial tissue grows. A former leading theory, known as retrograde menstruation, suggested that endometriosis was caused when menstrual tissue reversed through the fallopian tubes during a woman's period and implanted in the abdomen. But, according to Guidone, recent research has questioned this by concluding that, while many women experience retrograde menstruation, only some are affected by endometriosis. "I think it's probably very safe to say we've got a combination of factors," she says.

As her doctor explained the disease, Chloe was filled with both fear and relief. After years of trying to describe her pain, and moments when she wondered if it really was all in her head, she was finally being offered something more than a single pill. Perhaps she really was sick. And perhaps something could be done to help her.

But her hope was short-lived. "In the same breath," she remembers, her doctor told her that the only way to be formally diagnosed was to undergo surgery. Chloe was about to start college. She was working a minimum-wage retail job, without benefits or security. The procedure she needed would cost over $3,000. Surgery, she said, was "like reaching for the holy grail."

Chloe's doctor was sympathetic about her financial situation. She suggested they try the "wait and watch" approach: Until she had insurance, Chloe should go on birth control. If taken without a monthly break it would prevent the breakdown of her endometrial tissue and help control her pain. It was the best she could offer at Chloe's price range.

Back home, Chloe searched for more information about endometriosis on the web, as her doctor hadn't been able to offer her any literature on the condition. "I found nothing," she says, except a WebMD page that looked like "hieroglyphics." She took her doctor's advice and began a new routine, swallowing another single pill.

Nothing is known to prevent endometriosis, and nothing is known to cure it. Suppressive measures, such as birth control or other controversial hormone therapy, can offer patients relief from their symptoms. "But that's all that it's doing," Guidone says. The disease isn't being treated—just managed.

Birth control is used to make periods shorter, lighter, and more regular, which can help ease the pain. Other hormonal treatment can put the body into a menopausal state, preventing ovulation, menstruation, and the growth of endometriosis—though side effects can include bone loss, depression, and symptoms of menopause like hot flushes and insomnia.

Doctors sometimes recommend women undergo a hysterectomy to relieve their pain. However, according to Guidone, hysterectomies are not a conclusive way to "cure" women of endometriosis, as lesions remaining in other parts of her body will continue to cause pain. And, while not all women who have endometriosis are infertile, a hysterectomy will definitely prevent a patient from having children.

Today, Guidone says, the "gold standard" treatment for endometriosis is the most invasive: laparoscopic excision surgery. During the procedure, a small opening is made in the patient's abdomen. Inserting a laparoscope, a long tube-shaped implement with a light and a camera attached, allows the surgeon to see if and where endometriosis is present, without the need for open surgery. The lesions often appear as dark-colored spots, or cysts filled with dark brown fluid. The surgeon can then cut out the lesions.

Total removal can leave a patient pain-free, but this requires expert skill. According to Guidone, only a handful of surgeons in the US have the expertise to carry out successful laparoscopic surgery, which removes all endometrial tissue without harming a patient's reproductive organs. Their waiting lists can run into months or years.

Once Chloe went on birth control, she felt like her pain was finally under control. She started her undergraduate degree in fall 2013. Six months passed, and she went off birth control, uncomfortable with severe side effects she attributed to the medication. Although she tried not to think about it too much, she feared that, somewhere in her abdomen, rogue tissue continued to grow. She worried the extreme pain would one day return. But ignoring that she had endometriosis meant she could avoid an even more frightening prospect: a world where she would need to undergo surgery and possibly face a lifetime of pain.

"That was something I didn't want to get involved with," she says. "So I went on with my life and pretended like everything was OK, like everything was normal."

Chloe was able to convince herself this was true throughout college, and for a brief while afterwards. She took up a job at her college admissions office, with a benefits package that included excellent medical coverage. She enjoyed the job, she loved her colleagues, and she was a hardworking employee. But without fail, each month brought stronger cramps, which started earlier in her cycle.

She didn't want to believe her symptoms were returning. But now she was in near-constant pain. The symptoms she used to experience around the time of her period had stretched to ordeals lasting two, then three weeks—and now there was no relief. Plus, she had begun to feel strange shooting sensations, tingling, and numbness in her left leg.

One morning, curled up on her office chair with a blanket and heating pad, she snapped at a co-worker. It was so out of character that she agreed—finally—to call a hospital advice line. They told her to go straight to the E.R. To Chloe, it felt like a defeat. In the hospital parking lot she refused a wheelchair, and convinced her co-worker to let her go in alone. She wanted to be in control. But she also wanted relief.

In the months after that hospital visit, she took three fruitless trips to the E.R., where a pelvic exam and CAT scan confirmed she had cysts on her ovaries but couldn't show endometrial lesions. She was prescribed pain medication, but her life felt unmanageable, and she could barely function. In summer of 2016, she finally told doctors she wanted surgery. Within weeks, her OB/GYN agreed that she needed a laparoscopy to confirm the presence of endometriosis and, if it was there, to remove what they could find.

The laparoscopic procedure is classified low-risk, but Chloe was terrified when she arrived at the hospital before sunrise last September. It wasn't the surgery she was afraid of. Instead, one thought plagued her: They could go in there and not find a damn thing.

As she lay naked on the hospital gurney and cocooned in a warming blanket, members of the surgical team loomed over her, one by one, to ask her to repeat what was about to happen. A nurse arrived and injected something into Chloe's IV. There was no sting, no pill. Just the cushion of a deep slumber, as everything went blank.

A moment later, Chloe became Chloe E. Pudwill, a 27-year-old female with left ovarian cyst, pelvic pain. According to her Long Operative Note, her general anesthesia was induced without difficulty. She was prepped and draped in the usual sterile fashion. Gloves were changed. A skin incision was made. Appropriate placement was confirmed.

Chloe's abdomen was inflated with carbon dioxide, in order for her surgeon to move easily around her organs. Then the laparoscope was inserted. The surgeon, the nurse, the scrub technician, and the anesthesiologist lifted their eyes to the screen.

Inside, they found more than they expected. Lesions peppered Chloe's abdominal cavity like dark, bloated spider sacs. The severity of her condition surprised her surgeon; he knew that during Chloe's pelvic exams doctors had not felt evidence of scarring consistent with acute endometriosis. Now he saw why. Chloe's endometriosis was much higher in her pelvis, where it would have been even harder for doctors to identify.

With Chloe's abdomen filling the screen, the team identified her reproductive organs, which they would do their best to leave unharmed. But exploring gently with the laparoscopic, her surgeon discovered something else. Chloe's growths were so severe that—slowly, year after painful year—the extra tissue had dragged her left ovary away from its natural spot, nestled under the curve of her fallopian tubes. Now it was enmeshed in her side.

The team got to work. Taking care not to damage her right fallopian tube, her surgeon cauterized a lesion above her ovary and dissected another from part of her large intestine. The cyst on her left ovary ruptured as he tried to remove it, but he cleaned up the mess. Next he cut Chloe's ovary out of her side and put it back in the correct position. More lesions were found and removed from her ureter and her right ovary. In total, six specimens—four lesions and two cysts—were removed.

By the time the surgeon was finished, Chloe's abdomen was pink and bloated. The beat of the heart monitor pulsed steadily. The specimens, gristly and harmless, were placed on sterile napkins and labelled neatly, ready to be analysed by the hospital's lab.

Chloe E. Pudwill tolerated the procedure well and was transferred to recovery in a stable condition.

Waking from the surgery, Chloe felt like someone had kicked her in the stomach. But when her surgeon arrived to see her, groggy in the recovery room, he confirmed what she'd waited so long to hear.

They had found endometriosis. And they had removed it all.

"I did have something, and also it wasn't just a little bit," she says. "It was enough that it was pulling an ovary to my side." The validation cut through the haze in her head: She had been in pain, she had not been imagining it, and she had not been exaggerating. She had needed to walk out of the vaudeville show that night. She had needed to leave work that day. She had an illness, and that illness had a name.

The surgeons had removed all the endometrial tissue they'd found, but Chloe would be left with permanent damage to her left side, caused by the years her ovary and reproductive organs had been pulled out of place by the ever-growing tissue. The years ahead held physical therapy to help her muscles reform and the possibility that, if her surgeon had missed even a small lesion, her pain could return.

Before her surgery, Chloe's endocrinologist had asked her where she saw herself headed after the procedure. "I need to get better," Chloe told him. "This has ruined my life." She wanted the pain to end, and she wanted to start graduate school.

Almost a year after her surgery, she is currently pursuing her Master's in clinical psychology alongside her job in college admissions. Daily exercises help to ease the muscle damage in her side, and she still carries ibuprofen everywhere she goes. "You do what you gotta do," she shrugs. The most important thing, though, is this: The fear of the pain that had blighted her since she was 11 years old is finally gone. Her life, she says, is more or less back to normal.

Chloe knows she is lucky. From her first E.R. visit to her surgery, she spent four years waiting for a diagnosis—far less than the average nine. She had the means to pay for surgery, which has given her relief. For some, surgery has no effect on their chronic pain.

When it comes to revealing the secrets of this common and sometimes debilitating disease, experts agree we have a long way to go. But for now, for Chloe, the future looks bright. Standing in a spill of late sunlight, she pulls her shirt up above her bellybutton to show what's left of her story. Sixteen years of shame, and fear, and pain, have been exchanged for three abdominal scars, each one about the size of a single, small pill.