Whether you’ve just been diagnosed with endometriosis or are concerned you, or someone you love, might have it, you’re probably worried. Know this: Everyone featured on HealthCentral with a chronic condition felt like you do now. But we—and they—are here for you. On this page alone, you’ll discover the symptoms and causes of the condition, as well as how it's diagnosed, the best treatments, and all the crucial information to help you not merely manage—but hopefully thrive. We’re sure you have a lot of questions…and we’ve got the answers you need.
Our Pro PanelEndometriosis
We went to some of the nation's top experts in endometriosis to bring you the most up-to-date information possible.
Ritchie Delara, M.D.Minimally Invasive Gynecologic Surgeon, Department of Obstetrics and Gynecology
Mary Jane Minkin, M.D.Clinical Professor of Obstetrics, Gynecology, and Reproductive Services
Stacey Missmer, Sc.D.Professor, Department of Obstetrics, Gynecology, and Reproductive Biology
What Is Endometriosis?
Trying to pronounce this word can be a bit of a pain, but it’s nothing compared to the pain felt by women who have endometriosis, a condition that involves the endometrium—or inner lining of the uterus that thickens during a woman’s menstrual cycle and is released when she has her period.
The cells that make up the endometrium are coded to perform a very specific and important task: They build up blood during the follicular and luteal phases of the cycle, in preparation of becoming a home for a fertilized ovum. (Congrats! You’re pregnant!) No baby on board? The endometrium detaches from the uterus and leaves the body through the vaginal canal during menstruation.
But sometimes, some of those endometrial cells find their way out of the uterus and into the pelvis, where they make themselves a new home. That’s a problem, and it’s known as endometriosis.
In endometriosis, these cells in your pelvis grow into thick tissue, like they would if they were in the uterus, then break down and bleed during your period. But because the tissue is outside of your uterus, there’s no place for it to go when it “sheds” as part your monthly cycle.
Instead, tissue in this area builds up, irritating the surface of internal organs and causing swelling. This leads to scar tissue, painful lesions, and adhesions to the walls of organs that prevent them from being pliable.
In some cases, the endometriosis tissue can grow to nearly the size of a football, while in other cases the growth can be small but exceptionally painful.
Just How Common Is Endometriosis?
Among reproductive-age women, experts suggest that around 11% have endometriosis, or around 6.5 million American women. Between 60% and 80% of those have dysmenorrhea (painful periods), up to 50% have chronic pelvic pain, and 40% to 50% experience dyspareunia, the fancy term for painful sex during penetration.
Although this condition is fairly common, issues of awkwardness and stigmatization make it especially hard for younger women to talk about painful intercourse and pelvic pain, leading to a pileup of feelings of physical pain and emotional isolation.
What Does Endometriosis Feel Like?
The pain from endometriosis is correlated with where it’s located. For instance, endometrial growths on or near the bowels can register as gastric pain, constipation, or pain when you poop. Endometriosis can also cause painful urination or blood in the urine.
Sometimes, endometriosis can be disguised by other health issues. For instance, if you get treated for irritable bowel syndrome but still don’t feel entirely better, it could be because endometriosis is playing a role.
Despite the significant pain endometriosis can cause, asking for help—and receiving an accurate diagnosis—is not always easy. The delay between onset of symptoms and diagnosis can be between seven and 10 years. There are a bunch of factors at play, including stigmas around gynecological and pelvic pain, absence of a standardized endometriosis screening test, lack of experience among doctors in diagnosing and treating endometriosis, and lack of access to care.
Complicating matters, for around 20% to 25% of people who have endometriosis, the condition is asymptomatic, meaning they don’t have pain or concerning periods. That means the disease may not discovered until the woman is having trouble getting pregnant and finds out that endometriosis lesions are affecting her reproductive organs. Between 30% and 50% of women with endometriosis have infertility issues.
Though endometriosis is common, doctors still don’t know a ton about what causes it, partly due to a lack of research funding. The prevailing opinion is that it’s due to something called retrograde menstruation. Here’s how that works:
Normally, during menstruation, the blood and lining of the uterus leaves the body via the vagina and vulva. Menstrual fluid is mostly blood, vaginal secretions, and endometrial cells which are part of the reproductive process.
In retrograde menstruation, instead of the blood flowing down and out of the body, some of it flows upward, filling the fallopian tubes, and releasing into the pelvis.
A little reverse blood flow is common and not harmful; the body’s immune system has ways of getting rid of stuff that isn’t supposed to be there. But if retrograde menstruation happens often or a lot of blood enters the pelvic area, it can cause more problems.
One such problem is that endometrial cells in the menstrual fluid attach themselves to the pelvic walls or to organs, such as the outside of the uterus, ovaries, fallopian tubes, bladder, lower intestines, liver, kidneys, and even the lower spine.
Another theory is that hormones may influence cells outside of the uterus to start mimicking the function of endometrial cells. And yet another line of thinking is that the lymphatic system—the pathway for fluid flowing through the body—contributes to the development of endometriosis.
What Are the Risk Factors for Endometriosis?
Researchers are beginning to understand a host of factors that increase the odds of getting the condition—although why this is the case is still being explored. The biggest risk factor? Something 51% of the population will experience at some point during their lives: Being a woman of reproductive age. These are a few other risk factors associated with endometriosis.
Autoimmune disorders: The immune system’s dampened ability to deal with the relocated endometrial cells means they have more time to form a lesion and cause problems.
Chronic inflammation: If you’re dealing with another inflammatory condition, that environment can exacerbate endometriosis symptoms.
Genetic predisposition: Having a parent, sister, or aunt with endometriosis raises your chance of getting it, too.
No kids: Women who have never given birth are at a higher risk.
Pelvic surgeries: Having c-sections or hysterectomies may allow endometrial cells to escape the uterus and take up residence elsewhere in the abdomen.
Reproductive tract abnormalities: Obstructions that inhibit your body’s ability to transport the endometrium lining out the body increase your risk for the condition.
Weight: Lower body weight has been linked with endometriosis.
The first thing most people think of when they hear endometriosis is pain. The pain can come from the lesions themselves or from painful periods, since the endometrial cells are affected by the hormonal changes your body goes through during the menstrual cycle. Here are some of the symptoms you can expect with endometriosis:
Period pain: Endometriosis exacerbates the cramping and bleeding your body is already going through during your period. Endometriosis lesions can also bleed and release blood into the pelvic cavity while inflaming and damaging surrounding tissue.
Sex pain: Up to half of the women with endometriosis will also experience painful sex, also called dyspareunia, because of the inflammation caused by endometriosis. (Pain may occur after sex as well.)
Lower back pain: On rare occasions, endometrial cells can attach to the kidneys, leading to symptoms that include lower back pain, difficulty urinating, or urinary tract infections.
Bowel pain: If it hurts when you poop, endometriosis could be to blame, if the cells have attached to your bowels. The rogue tissue can also cause organs to stick to each other, like the fallopian tubes with the uterus, leading to more pain, especially during sex.
Infertility: Endometriosis can affect the functioning of your ovaries and fallopian tubes. The inflammatory environment created by the endometriosis may also produce a toxic situation that prevents fertility.
Gynecologists are trying to introduce measures that would help identify endometriosis symptoms among young teens to avoid future issues of infertility as well as social isolation and stigma associate with pelvic pain.
How Is Endometriosis Diagnosed?
Let’s say you have pelvic pain. And painful periods. And pain during sex. So you go to see your doctor, wondering if you might have endometriosis. What happens next?
First, your doctor will take a detailed health history, including things like your experience during periods, and whether you have any close relatives with the condition.
Then your doc will do a pelvic exam, inserting two fingers into the vagina and feeling for any large masses or organs that feel like they’re stuck together.
Next, your doctor may order an ultrasound, which may be able to detect endometriomas (endometriosis on the ovaries) or deeply infiltrative endometriosis (DIE), although it’s less reliable at diagnosing other forms of the disease.
Sometimes an MRI is ordered, as much to rule out other conditions as it is to diagnosis endometriosis, since the lesions are often too small to be picked up.
The only way to conclusively diagnose endometriosis, though, is via laparoscopy: an operation in which small cuts are made in the abdomen and instruments, including a long thin camera, are inserted so that the surgeon can visually see what’s there and take tissue samples. Those samples will get sent to a lab for confirmation of the diagnosis.
Treatments for Endometriosis
These days, the prevailing wisdom is to treat suspected cases of endometriosis with over-the-counter drugs and birth control, even if there’s not a conclusive diagnosis. For women who struggle with infertility, however, surgery may end up being preferable to hormonal interventions.
In the future, DNA testing may be used to identify which patients are at risk for endometriosis, as well as which treatments would be the most effective for their specific disease. The severity of your condition and degree of pain it causes you also help determine your course of treatment.
Non-steroidal anti-inflammatory drugs (NSAIDs) can help curb your body’s production of prostaglandins, compounds that cause menstrual cramps. For some women, this is enough to ease the pain associated with endometriosis. In certain cases, a doctor may opt for a higher-dose prescription NSAID instead.
Severe cases of endometriosis sometimes dovetail with worse-than-average periods (meaning more bleeding and more pain). You can control one or both of those conditions with a hormonal contraceptive. Regulating or suppressing your period can prevent endometriosis from developing or worsening over time. There are two types of hormonal contraceptives: Estrogen plus progestin, and progestin only. Both can be effective in controlling endometriosis. If you’re on the pill (the estrogen plus progestin option), you’ll probably want to skip the placebo week that allows you to get your period and take the hormones continuously.
Nonsteroidal Aromatase Inhibitor
This class of drugs affects the way the body uses estrogen. The meds are primarily used for women who have estrogen-receptive cancers (think breast cancer and endometrial cancer). But some studies have shown that a short course of nonsteroidal aromatase inhibitor—around six months—can reduce endometriosis symptoms and disease activity, giving the body’s natural defenses time to clear it out of the pelvis.
Estrogen suppression can have long-term impacts such as osteoporosis and heart disease, so your doctor may put you on a calcium and vitamin D supplement, and also take family history of cardiac issues into account.
Examples of these drugs include:
Arimidex (anastrozole): This helps suppress the production of estrogen.
Femara (letrozole): This stops the estrogen receptors in cells from binding to estrogen molecules.
Minimally Invasive Surgery
Using laparoscopic techniques, your surgeon will remove the lesions he or she can see, either via excision (cutting away the endometriosis) or ablation (using lasers or electrosurgery to destroy the lesions). The surgery is helpful to alleviate pain, but in some cases, either the endometriosis is embedded in areas of the pelvis that are impossible to safely remove or the area is too microscopic for the surgeon to detect. That’s why for 40% to 80% of women, surgery is not entirely curative and pain returns within two years of the procedure. But that doesn’t mean the pain returns with the same intensity. If you’re considering surgery, you and your doctor will have a long talk about your goals and expectations to ensure it’s the right choice for you.
Other Surgical Options
For women whose endometriosis is uncontrolled and significantly compromising their quality of life, a bilateral salpingo-oophorectomy may be considered. This is a serious procedure where the ovaries and fallopian tubes are removed—sometimes combined with a hysterectomy, or the removal of the uterus. While it may solve for the pain of endometriosis, the surgery carries a risk of other major health complications, so your doctor will likely only consider it as a last resort.
Reading about surgery for endometriosis can feel a bit overwhelming. And in fact, pelvic pain itself can be a really emotional and upsetting experience—not the least because for years, some doctors did not take it seriously. (Raise your hand if your doc or someone in your life told you that period pain was just "part of becoming a woman." Yup.) But in this brave new world we call the 21st century, here's the deal: Significant pelvic pain is not normal, and even moderate pelvic pain shouldn't be tolerated as today's treatments can resolve it. Pay attention to your body and if you're feeling a pain that concerns you, trust your gut. See a doctor, and keep seeing doctors, until you get the answers and help you deserve.
Frequently Asked QuestionsEndometriosis
Does the age I first got my period matter with endometriosis?
Possibly. There’s some evidence that having your first period before age 11 increases your risk for endometriosis. But a study from France found that, among 789 women operated on for endometriosis, the age of their first period was not associated with the disease.
Does menopause stop endometriosis?
Not always. Even when the ovaries are no longer producing estrogen, there’s still some of the hormone circulating in the body. That’s especially true for women who take hormone replacement therapy. And in rare occasions, endometriosis can be discovered for the first time when a woman is post-menopausal.
Can lifestyle changes help my endometriosis?
It's possible. Exercise, a healthy diet, cutting back on alcohol and caffeine, and getting enough sleep may improve your symptoms. There’s also research suggesting that omega-3 fatty acids like those found in cold water fish, as well as vitamin D supplements, can help.
What if my doctor shrugs their shoulders to my pain?
Women’s pain is chronically undervalued, and the unfortunate truth is that it’s on you to keep asking questions or switching doctors until you get the answers you need. The Society for Women’s Health Research says it takes the average woman seven doctor appointments before getting the correct diagnosis. Don’t give up!
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