This week British lawmakers called for better research and support for people living with endometriosis, blaming the lack of funding, research, and adequate care on medical misogyny. The painful disease has a devastating impact, the lawmakers’ report found; many people with endometriosis wait years to be diagnosed, only to face a diminished ability to earn a living and a lack of mental health resources to help cope with the trauma of chronic illness and chronic pain.

This is not unique to the U.K.; the situation for endometriosis patients in the United States is equally abysmal.

Roughly 1 in 10 people who are assigned female at birth will be diagnosed with endometriosis in their lifetime, though experts estimate the actual prevalence of the disease is much higher. And while menstruation pain is a common symptom, endometriosis is more than just bad periods.

About endometriosis

Endometriosis is a chronic reproductive condition that occurs when tissue similar to—but not the same as—the uterine lining grows elsewhere in the body. It can cause chronic pain, fatigue, organ dysfunction, and infertility. Endometriosis is incredibly painful; it can be one of the most painful health conditions a person can experience, along with a heart attack, shingles, and a slipped disk. And while bad cramps can certainly be part of endometriosis, the symptoms and pain vary broadly by patient.

In addition to pain, endometriosis can cause symptoms like gastrointestinal issues, brain fog, urinary dysfunction, and leg, back, and hip pain. Thanks to centuries of medical misogyny and women being told that pain is just a necessary and normal part of their daily lives, it takes the average patient almost a decade to be diagnosed. This is especially problematic since endometriosis is a progressive disease—the longer it goes untreated, the higher your risk of long-term damage to your organs, fertility, and nervous system.

Endometriosis can only be diagnosed surgically; it is uncommon for it to show up in ultrasounds or other tests, so never let a doctor tell you you don’t have it simply because they don’t see it.

Who can get endometriosis

Endometriosis is not a woman’s disease. Trans men and nonbinary folks can also have endo, and in extremely rare cases, it’s even been found in cis men.

Race also plays a role in care: Black women and people of color disproportionately receive poor endometriosis care because of racist beliefs—stemming from eugenics and slavery—about how Black people experience pain. This is also why Black people experience longer wait times in emergency rooms, poor access to pain management in general, and higher rates of maternal mortality.

What endometriosis feels like

For many, painful periods are a huge part of life with endometriosis. The disease is “estrogen respondent,” which means the presence of estrogen in the body aggravates and advances it; in others this can be the presence of progesterone or both hormones.

Think about endometriosis like gasoline, and the hormones like a match. This is why that time of the month is particularly bad for people living with endometriosis. But endometriosis pain is often not confined to a period or to the menstrual cycle; it can flare up at ovulation or at any point in the month.

And it doesn’t necessarily feel like “cramps.” Endometriosis can feel like a deep burning in your organs, or like they’re being stuck with shards of glass. It can feel like a stabbing pain or like a mind-numbing ache, as if your whole pelvis has a migraine. Some say it’s like having all your organs wrapped in barbed wire.

Depending on where you have endometriosis, your pain might be different: Bladder disease often causes lower back and lower pelvic pain and burning and an increased urgency to pee, for example.

Where endometriosis grows

The short answer is: anywhere in the body. While endometriosis is most commonly considered a reproductive disease, it can be and has been found pretty much everywhere. It can grow on the reproductive organs and other pelvic organs like the bladder and the bowel. It can also adhere to the pelvic sidewalls; adhesions and fibrosis are common in endometriosis patients and in more advanced cases can begin to fuse affected organs together.

But endometriosis has been found outside the pelvis as well—even, very rarely, in the brain and heart. Endometriosis on the diaphragm and thoracic endometriosis are other common manifestations of the disease, but it often goes undiagnosed because research still indicates this is rare. Endometriosis on the diaphragm and thoracic endometriosis can cause a host of different symptoms including chest, shoulder, and collarbone pain—usually, but not always, on the right side. Thoracic and diaphragmatic endometriosis can also cause shortness of breath and, in some cases, lung collapse.

How to treat endometriosis

Endometriosis is a chronic illness, which means a cure doesn’t really exist. And most OB-GYNs don’t have the skill or expertise to offer proper care; the go-to endometriosis treatments are hormone suppression—typically birth control to control menstruation—and ablation surgery, where lesions of the disease are cauterized (burned) off.

But here’s the issue with that: Some experts believe that endometriosis can produce its own estrogen, so while birth control can help to manage symptoms, the disease can continue to grow even in the presence of hormone suppression. And the lesions themselves are like icebergs—what you see on the surface is just the beginning. So ablation surgery only treats superficial disease, leaving the worst of it to continue to grow. Birth control and ablation really only serve as Band-Aids that can suppress the disease without actually treating it.

This is where excision comes in.

Excision surgery

Excision surgery is the gold standard in endometriosis care. It involves cutting out the lesions that endometriosis produces, as well as cutting away the adhesions produced by the disease. Excision is considered one of the most technically difficult gynecological surgeries to perform, similar to what cancer specialists do when they remove growths. It is not a cure, as endometriosis can technically recur, but it has the lowest recurrence rate of any other procedure. And with a skilled specialist, it’s possible for a patient to never need a repeat surgery, or to only need a small number of surgeries in their lifetime.

Only a handful of surgeons nationwide and around the world are skilled enough to do it.

To make matters worse, insurers code excision and ablation the same, which means a doctor who performs a quick ablation procedure is reimbursed the same as one who performs what can be a four- to eight-hour surgery requiring a high level of skill. (Think about it like reimbursing a doctor performing throat cancer surgery the same as someone removing someone’s tonsils.) This means that most endometriosis specialists operate out of network, making the cost of care astronomical, and access abysmal.

Hysterectomy

It’s a common misconception that a hysterectomy cures endometriosis. By definition, endometriosis occurs outside of the uterus, so removing it actually does nothing for the disease (it does for adenomyosis; more on that later). And like we’ve said, because the lesions can continue to grow in the presence of hormone suppression, they can continue to grow in a body without a uterus and without ovaries—so even a radical hysterectomy, where the uterus and ovaries are removed, would not provide relief for a patient.

Is adenomyosis the same as endometriosis?

Adenomyosis is when disease is present in the uterus. It’s a similar but technically distinct disease from endometriosis—and often considered endo’s evil twin. Symptoms of the two do crossover, but because adenomyosis is present in the uterus, the most common symptoms for it are heavy or irregular bleeding, severe midline (middle of the pelvis, under the belly button) pain, lower back pain, and pain that radiates down the front of the thighs.

Like endometriosis, adenomyosis is difficult to diagnose without surgery; it rarely shows up on scans and, while doctors can take biopsies to check for it, if they sample a part of the uterus where the disease isn’t present, it can produce a false negative.

Unlike endometriosis, adenomyosis does have an absolute cure: a hysterectomy. But for patients not yet ready to make that decision, an IUD can help manage the symptoms of adenomyosis. And some specialists offer a procedure called a presacral neurectomy, where the nerve that connects pelvic pain to the brain is severed—this can also be offered as an option for endometriosis patients.

How to manage the pain

Excision is the most effective treatment for endometriosis but, as noted, is incredibly hard to access—even with proper excision care, patients can experience long-term damage to their nerves and muscles from chronic pain and often develop comorbidities like pelvic floor dysfunction. Pelvic floor physical therapy is a routine treatment for endometriosis patients, involving a physical therapist doing deep tissue and internal massage to help relax the tension in the pelvic floor muscles that has built up from years of pain.

Alternative treatments like CBD and THC can be useful for pain management, and many patients also see results with treatments like acupuncture. Of course there are over-the-counter medications, as well as prescription painkillers.

Some patients see relief by following a low inflammation diet, but it’s important to remember that you are allowed to eat whatever you want. Restrictive diets can make you feel as though your pain is your fault, and it never—ever—is.

What to do now

A potential endometriosis diagnosis can feel really overwhelming, and it’s completely normal to feel scared. If you think you might have endometriosis, the first thing to do is take a deep breath; this is a big community and you are not alone. There are lots of great online support groups and websites that have more information to walk you through next steps. Talk to your doctor, prepare questions ahead of your appointments so you feel prepared and in control; never be afraid to get a second (or third!) opinion, and feel free to bring a loved one or friend to your appointments for support. Many endometriosis patients experience anxiety, depression, and other mental health effects of living with chronic pain, and therapy can also be a critical tool for living with this disease.

It’s common to be dismissed or disbelieved when you have endometriosis, but that does not ever mean your pain is not real. The most important thing to remember when you live with endometriosis is: you are the expert on your own body.