By Zahra Barnes
To put it simply, endometriosis is hell. The condition, which wreaks havoc on at least one in 10 American women, can result in gushing periods, agonizing pain, and issues with infertility, among other symptoms. What’s worse, endometriosis is a wily beast that experts are still trying to understand. It’s notoriously tricky to diagnose—the symptoms overlap with many other gynecologic issues, and the only true test is minimally invasive laparoscopic surgery—difficult to treat, and nearly impossible to cure for some women. Women often suffer through years of misdiagnoses and ineffective treatments, all the while sifting through information themselves in a desperate effort to find relief.
Fortunately, there’s more information out there than ever before. People are sharing their stories in the hopes that it’ll help others going through the same thing, and celebrities like Padma Lakshmi and Lena Dunham are talking about it so women can be their own health advocates when doctors can’t get to the bottom of what’s going on. There’s even an annual march to raise awareness.
In recent years, there have been advances in endometriosis treatment, with more to come in the future, Pamela Stratton, M.D., in the office of the clinical director at the National Institute of Neurological Disorders and Stroke, where she studies the link between endometriosis and pain, and an advisor at the Boston Center for Endometriosis, tells SELF. But even as doctors are learning more about the disease, they’re learning that there’s so much they don’t know—and some of what they thought they knew might actually be wrong.
Experts don’t know what causes endometriosis. And some disagree on what the disease actually is.
Endometriosis is a condition in which endometrial tissue, the tissue that makes up the uterine lining (aka endometrium), migrates from its rightful spot in the uterus to other organs. Or at least, that’s been the common belief. But a new school of thought says that the tissue isn’t made up of endometrial cells at all, but something very similar, with crucially different characteristics.
The wayward cells—usually found in the neighboring pelvic organs, such as the bladder and bowel—cause inflammation that leads to pain, which can range from bearable to excruciating. Like normal uterine lining, the tissue builds up and sheds over the course of the menstrual cycle, causing internal bleeding. Cysts can form—and rupture—as can scar tissue, which can impair fertility. What’s more, though these endometriosis cells typically show up in the vicinity of the uterus, in rare cases the disease can even affect the lungs, diaphragm, and in extremely rare cases, the brain.
Doctors don’t know what causes endometriosis in the first place. There’s evidence that some people are just genetically predisposed to having endometriosis, says Tamer Seckin, M.D., co-founder of the Endometriosis Foundation of America and author of The Doctor Will See You Now: Recognizing and Treating Endometriosis. In fact, research has shown that some fetuses are born with it already in their systems.
The leading theory is that retrograde menstruation, or when blood flows backwards through the fallopian tubes and into the pelvis, leads to the condition—but only in some women. Experts estimate that over 90 percent of women experience retrograde menstruation, and in a subset of those women it results in the condition. “We believe that in women with endometriosis, their immune systems aren’t as skilled at cleaning up that debris, so it attaches in their body, grows, and is sensitive to [reproductive] hormones,” despite no longer being within the reproductive system, Stratton says. Specifically, that debris is sensitive to the hormone estrogen, which promotes painful inflammation and spurs endometriosis’ growth.
This hypothesis is predicated on the scientific belief that endometriosis cells originate in the endometrium and continue to behave normally outside the uterus. Opposing theories call elements of this into question.
Over the past two decades, researchers have realized that endometrial lining acts differently in women with endometriosis. “What scientists found is…under a microscope, the lining [of women with endometriosis] looks normal,” Stratton says. But on a molecular level, it seems to be resistant to the effects of progesterone, the other main reproductive hormone in women, which is dominant in the second half of the menstrual cycle. Seckin tells SELF that endometriosis cells also respond abnormally to estrogen, creating the inflammation that can lead to symptoms like severe pain.
Another view posits that, actually, the tissue making up endometriosis isn’t endometrial tissue at all. “The tissue is similar to the endometrium but distinctly different in that it has its own ability to produce estrogen,” Ken Sinervo, M.D., director of the Center for Endometriosis Care, tells SELF. “It’s genetically different from native endometrium within the uterus itself.”
Stratton isn’t sure about this theory and thinks retrograde menstruation has the most credence, but allows it’s true that the endometriosis lesions have more of the enzyme aromatase, which is involved in the production of estrogen.
Doctors are also investigating whether dioxins, a common toxic environmental pollutant, may play a role in how the endometrial lining acts. Dioxins are a type of endocrine disruptor, or chemicals that can skew people’s hormones, and are believed to cause reproductive problems in humans (most exposure comes from eating meat, dairy, and fish). More research is needed to prove a causal link.
No surprise, the controversy over the science of endometriosis extends to how it’s treated.
The main symptom of endometriosis is pain, and that’s what doctors focus on when treating their patients. Due to the prescription painkiller epidemic ravaging the U.S., many experts are pivoting away from drugs like opioids, instead suggesting nonsteroidal anti-inflammatory meds to manage pain. NSAIDs tamp down on the overflow of inflammatory chemicals like prostaglandins and cytokines, which cause the uterus to contract, creating pain for endometriosis sufferers, Stratton explains. “We recommend [NSAIDs] all the time, and patients get help with them,” Seckin says. But if you ask some women about using Advil to control their pain, they’ll look at you like you handed them a wine cork to hold back a flood.
The next step up is to treat the source of the pain, specifically the estrogen release that inflames endometriosis. “[Hormonal] strategies for treating endometriosis suppress menstrual cycle events by shutting off communication between the brain and ovaries or preventing the uterine lining from thickening,” Stratton says. When cells of the lining proliferate, so too can the endometriosis cells outside the uterus.
Disrupting the hormonal triggers is often accomplished with the use of combination birth control pills or the NuvaRing, which both contain estrogen (at low enough levels not to stimulate the endometriosis) and progestin, a synthetic form of progesterone. There are also progestin-only methods, like the Mirena IUD. But experts emphasize that these don’t work for everyone, and since endometriosis is a progressive condition, more drastic treatment can be necessary.
In those instances, some doctors will recommend Lupron, known as a GnRH (gonadotropin-releasing hormone) agonist, but that’s a divisive topic. GnRH is involved in estrogen production, and GnRH agonists cause an initial flare of estrogen but then drastically lower the levels of the hormone, bringing about menopause and potentially reducing endometriosis symptoms.
There’s a host of worries about Lupron. Women may experience hot flashes, sleep disturbances, and mood problems when on the drug, Stratton says. In rare cases, Lupron can cause issues like joint pain and memory loss, Sinervo says. “We also don’t know what the long-term side effects are of the medication,” he adds.
The body’s resulting lack of estrogen adversely impacts bone density (interestingly enough, the progestin in progestin-only BC metabolizes into a form of estrogen that is very weak but still beneficial for bone health, Stratton says). It’s also only recommended for six months maximum, after which symptoms can return.
Lupron’s manufacturer recently arranged for the possibility of prescribing it paired with norethindrone, or a type of progestin that helps temper the bone loss, but it’s taking a while to catch on, Stratton says. In the meantime, studies on a class of drugs known as GnRH antagonists, which immediately lower estrogen without that initial surge that can worsen symptoms, are ongoing, but they don’t seem promising, Sinervo says.
The rub: Treatments can be variably effective for different women, bringing relief for many and failing others, but one thing that’s true for all endometriosis sufferers is that once you stop taking them, the disease usually flares back up.
Long seen as the closest thing to a cure, invasive surgery is not the answer for all endometriosis sufferers, and some doctors are looking for more targeted treatments.
Even a surgery that removes the uterus and ovaries (whence estrogen is secreted) doesn’t necessarily put an end to the misery. It’s true that in some cases, having a hysterectomy and removing the ovaries may help mitigate the symptoms. But it’s far from a be all, end all treatment. For one thing, having a radical hysterectomy means a woman won’t be able to conceive or carry children, if that’s something she wants to do, so it’s a deeply complicated, personal, and emotional decision. Moreover, you can take away the “sources” of the problem but still be left with endometriosis lesions on other organs that may produce their own estrogen and continue to be painful and problematic, along with other artifacts of the disease.
“Some endometriosis may become suppressed or less active when a woman has a hysterectomy with removal of the ovaries, but if there’s a lot of scarring or fibrosis, which is thickening of tissues underneath the surface, that can continue to cause pulling, pain, and dysfunction of the bowel and bladder,” Sinervo says, adding that women who have had hysterectomies but continue to experience symptoms make up about 15 percent of his practice.
Remaining lesions can be cut out via laparoscopic surgery, a minimally invasive procedure, which is generally preferred over the radical surgery. Sinervo says, “You have to treat the disease where it is.” A skilled and experienced surgeon may be able to get everything out—or not. It requires the utmost surgical precision. Cutting endometriosis from areas like the ovaries can result in damaged fertility when done incorrectly. Some experts opt to cauterize the lesions instead, but that can lead to an extra painful healing process and doesn’t necessarily get at the scar tissue that may be nestled deep under the surface.
Even with effective surgery, pain can return because of endometriosis’ potential to inflict long-lasting damage on the central nervous system. When lesions start to grow, nerves grow into them, looping in the central nervous system, Stratton says. Endometriosis can also induce myofascial, or muscular, dysfunction, leading to knots of muscle that act as trigger points for pain and tenderness. In the search for better treatment, Stratton and a team of researchers are focusing on this link, recruiting a seemingly surprising agent in the fight: botulinum toxin, which is used in Botox.
“We found there’s a focus of these trigger points in the pelvic floor,” she says. In an ongoing study, the researchers have found women who were previously overrun with pain had “tremendous improvement” when botulinum toxin was injected into their pelvic floors. “It relaxes those trigger points but also works on the perception of pain,” Stratton explains. They’re still recruiting participants for the study, which you can learn more about here.
Although there’s no sure-fire way to cure endometriosis for every woman, doctors aren’t giving up on finding one. “This disease is terrible—it works like a cancer, just moving in, but it doesn’t kill,” Seckin says. While the medical world inches closer to uncovering what makes endometriosis tick, their advancements thus far have made a better life—one with less excruciating pain, and with the potential to still have children—a reality for many women. Unfortunately, far too many still suffer with pain every day, so there’s still much work to be done.