Why Is Endometriosis So Difficult To Diagnose? What To Know About The Under-Studied Illness That 1 In 10 Women Live With

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Kristin, 33, was 12 when she got her period for the first time. But this isn’t a story about blood on a pair of white pants making a tween want to die of embarrassment. Kristin was at Disney World with her family when suddenly she felt an intense stabbing pain in her lower abdomen. She became clammy, sweaty all over, and her leg seized up to the point where she was barely able to walk. Instead of the trip of her young life, waiting in line for thrilling rides, Kristin spent the next four days writhing in pain in the hotel room.

“I just remember thinking, ‘Is this what it means to be a woman?’” Kristin tells Bustle.

Kristin spent the next 19 years thinking that debilitating pain during her period was normal. Her mom had painful periods, as did her grandmother. So while they didn’t want to see her in pain, they viewed it as just something women in their family had to deal with.

But the pain truly was debilitating. For the rest of her time in school, Kristin missed at least three days per month. When she got a job, she had to regularly call out of work. It wasn’t until she was 28 and had to leave work to go to the emergency room due to crippling abdominal pain, her face going numb, and her foot and leg stopping working that she was started on the process of getting an accurate diagnosis.

Kristin is one of the one in 10 women who has endometriosis, which is a chronic, painful disease that occurs when tissue similar to the uterine lining grows on the outside of the uterus. While some people have relatively mild symptoms, others — like Kristin — are incapacitated by the pain. Symptoms can include painful periods, pain during sex, pain after sex, heavy cramping, heavy bleeding, lower back pain, and painful bowel movements. Dr. Sanjay Agarwal, director of Fertility Services, Professor of Obstetrics, Gynecology and Reproductive Sciences at UC San Diego Health, tells Bustle that he has one patient with endometriosis in her lungs. Every time she has her period, she goes to the ER coughing up blood.

While doctors still don’t know exactly what causes endometriosis, Dr. Agarwal says that the best theory so far is Sampson’s theory of retrograde menstruation. Sampson’s theory posits that, in some people, menstrual blood actually flows backwards and instead of leaving the body through the cervix and vagina, it ends up in the pelvic structures. The cells then start reproducing and growing uterine lining on the outside of the uterus, the bowel, the ovaries, or wherever else they land.

But Sampson’s theory is just one theory about the origins of endometriosis — and it has a lot of gaps. Endometriosis, like so many other “woman problems,” is under-studied, under-diagnosed, and difficult to manage.

How Is Endometriosis Diagnosed?

Kristin finally got her diagnosis of endometriosis after that visit to the ER led to a series of tests from 13 different doctors in one year. Krystle, 33, also suffered for 20 years before doctors found an ovarian cyst during an ER visit. For both women, it was the discovery of cysts that were large enough to require an operation that finally brought them an endometriosis diagnosis.

That’s because the most common way to diagnosis endometriosis is via laparoscopic surgery, which is when doctors make tiny incisions and use cameras to perform surgery. Whatever the reason for surgery, once the cameras are in, it’s possible to view and diagnosis endometriosis.

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But Dr. Agarwal says that even laparoscopy isn’t a great way to diagnosis the disease. First of all, it’s surgery — and even minimally invasive surgery is invasive. Secondly, sometimes the endometrial lesions are so small that the cameras miss them — or they’re literally microscopic. In those cases, women may have surgery to remove endometrial lesions, only to still be in pain afterwards.

Instead of relying on laparoscopic surgery, Dr. Agarwal thinks that doctors should assess a patient’s symptoms and, if they sound like endometriosis, treat them as such. He says that when a person presents with a series of symptoms, more often than not it is endometriosis and it shouldn’t take surgery to confirm that fact.

Dr. Agarwal also points out that one of the reasons people go so long without a diagnosis is that there are a wide range of symptoms of endometriosis. However, he doesn’t think that’s an excuse for the average six to 10 years that women live in pain before receiving an accurate diagnosis. “I know that men would not tolerate six to 10 years of pain,” Dr. Agarwal says. “No way would we tolerate that.”

The Surgery For Endometriosis

Endometriosis doesn’t have a cure yet, but there are ways for people to manage their symptoms — and 70 percent of women continue to live with pain after diagnosis, according to Dr. Agrawal. Management ranges from holistic approaches like changes in diet or acupuncture to extreme medical ones, like hysterectomy.

Lena Dunham famously underwent a complete hysterectomy at 31 in order to combat her own endometriosis, but even such a dramatic surgery isn’t always a solution. Dr. Agarwal and other experts on endometriosis say that hysterectomy isn’t usually recommended for people with endometriosis, because it’s a major surgery without guaranteed results.

“It would be like removing your hand because you broke your arm,” Kristin says. “Because that’s not where the disease is and not where it’s come from.”

And yet for women under 25 who have had hysterectomies, the number one reason is endometriosis, according to Dr. Agarwal. He says that’s because endometriosis is an estrogen-dependent disease and if you remove both the uterus and ovaries, the body no longer produces estrogen. For women in extreme pain, even something so dramatic as a complete hysterectomy starts to make sense.

“I personally think it’s terrible, absolutely terrible, that women have to resort to such major surgery in order to get any normal quality of life,” Dr. Agarwal says. “I don’t think most women under 35 have a hysterectomy because they’re really looking forward to it. They’re having it because conservative medicine has failed.”

The Medications For Endometriosis

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While Dr. Agarwal does see a place for surgery in endometriosis treatment, he views it as a last resort, only to be turned to if medications have failed. The most commonly prescribed medication on the market right now is called Danazol. And while many people see an abatement of endometriosis symptoms with the drug, it’s a testosterone derivative. That means its side effects include things like body hair growth, a deeper voice, and breast shrinkage, among others. For some women, this can be a hard sell.

There’s also a drug called Lupron that has good results for endometriosis, but it too comes with many side effects. However, there is hope. Dr. Agarwal is excited about a new drug called Orilissa that he says more gently suppresses estrogen. While studies have shown that this drug has fewer and less intense side effects than Danazol or Lupron, he cautions that we won’t really know until it’s in wider use.

“I think that this is a huge advance for women with endometriosis,” Dr. Agarwal says. “I hope that in the real world, we can suppress estrogen more gently, improving the symptoms from the endometriosis, but without creating excessive symptoms from low estrogen levels. It’s a more gentle suppression, rather than a severe reduction of estrogen levels.”

The Holistic Treatments For Endometriosis

In addition to medical interventions, many people with endometriosis turn to holistic treatments. Because it’s an inflammatory disease, some people find a measure of relief in lifestyle changes, including changes in diet, exercise, or alternative treatments like acupuncture.

Kristin — who also has adenomysosis, which occurs when uterine tissue pushes into the muscular walls of the uterus — describes her symptom management as a “healing mandala wheel” with a different way to ease her symptoms every day. Her treatments include acupuncture, herbalism, bathes, oils, heat, and ice — just to name a few. “Basically if it’s out there,” Kristin says. “I’ve done it.”

Krystle has had more success with medical interventions, which for her include hormonal birth control followed by an injection of hormones. “Once we did that, everything started being better for me,” Krystle says. “I felt like a new person. It was amazing to feel pain-free for a long time and to not have to dread my menstrual cycle every single month.”

In addition to medication, Krystle has found relief in exercise — especially running — and eating well. She also credits her “positive mindset,” which she acknowledges is “easier said than done” in the face of chronic illness and pain.

Here's How Can People With Endometriosis Advocate For Themselves

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Regardless of their symptoms or their treatment, one thing all people with endometriosis have to do is interact with health care professionals. And while some — like Dr. Agarwal or some of the doctors Kristin has seen — are compassionate, informed, and willing to listen to their patients, others aren’t. After a surgery that not only didn’t reduce her pain but actually increased it, one of Kristin’s doctors told her that she didn’t have any next steps for her and that she made her “feel like a failure.”

"It was a bit of an eye-opening experience as a woman participating in the health care system, how dismissed I was by many doctors. I was called hysterical."

“It was a bit of an eye-opening experience as a woman participating in the health care system, how dismissed I was by many doctors,” Kristin says. “I was called hysterical. A doctor told me to go see a psychiatrist. A doctor told me I was seeking attention and that I needed to seek therapy. I was told that I just needed to accept things for the way that they are. I’ve hit dead ends with more doctors than I can count.”

Along the way, Kristin and Krystle have both become great advocates for their health — and their sanity. The first recommendation they have for other people with endometriosis who are trying to advocate for themselves? Remember that “painful periods are not normal,” no matter how bad your mom and grandma had it.

The second recommendation is to not take “I don’t know” for an answer. “Be an advocate for your own health,” Krystle says. “If a doctor dismisses you, seek another doctor.”

Dr. Argawal says that one common issue is that women feel uncomfortable talking about period-related or sex-related issues with their doctors. He recommends bringing up the word endometriosis yourself by asking if that’s what the problem could be. And Kristin encourages anyone who’s dealing with serious pain to speak up.

“I know that it’s hard and taboo to talk about periods,” Kristin says. “It's OK to talk about them; it’s OK to speak up; it’s OK to say you’re in pain. And if you don’t feel like they’re listening to you, go find another doctor.”

Finally, educate yourself. Both before you’re diagnosed and after, read everything you can get your hands on. Talk to other people who are living with endometriosis about their experiences. Ask questions. “I think patients should empower themselves,” Dr. Agarwal says. “I tell my patients, Google. Talk to friends. Talk to people around the globe. And come back to me with questions.”

Dr. Agarwal acknowledges that there’s a lot of information out there and “not everything will be correct.” “But you know what?” he says. “A lot of it is.”

If you think might be suffering from endometriosis but are struggling with getting a diagnosis, know that you can do this. There is hope — and compassionate doctors, like Dr. Agarwal, do exist. You shouldn’t have to fight so hard for your own health and sanity, but until more people (and health care professionals in particular) are educated about female reproductive health and more research is funded, this is what we have.

In the meantime, the rest of us can help by talking. Talk about your periods. Bust down the stigma and shame. Because someone who’s suffering from abnormal periods can’t know they’re abnormal unless she knows what normal is. Let’s spread this knowledge so that hopefully the next generation won’t have to way a decade for diagnosis, only to still live with pain.