10 Facts About Endometriosis

iStock
iStock

Eye-popping pain. Bloating. Heavy periods. Infertility. These are all symptoms of endometriosis, a chronic ailment that is believed to affect up to one in 10 women between the ages of 15 and 49. It can also take a serious toll on patients' mental health. Here's what you need to know about this condition.

1. THE NAME DOESN'T REVEAL MUCH ABOUT THE CONDITION.

Endometriosis, or endo, for short, gets its name from endometrium—the thin layer of tissue that lines a woman's uterus. "Endo is a condition in which endometrial-like tissue grows outside of the uterus, typically in the pelvic area," says Kristin Patzkowsky, M.D., an assistant professor of gynecology and obstetrics at the Johns Hopkins University School of Medicine. Common sites for endometrial growths, called lesions, include the ovaries, fallopian tubes, outer surface of the uterus, and the ligaments and other tissues that hold the uterus in place. The number of lesions can vary and range in size from a few millimeters to grapefruit-size.

2. DOCTORS AREN'T SURE WHAT CAUSES ENDOMETRIOSIS.

The most widely accepted view is that endometrial tissue relocates to other parts of the body during a woman's period. Here's a quick review of the female reproductive cycle: Each month, under the influence of the hormone estrogen, the endometrium thickens and swells in preparation for a potential pregnancy. If pregnancy doesn't occur, the endometrium sheds and flows out of the body. This bloody discharge is menstruation, commonly known as a period. But sometimes menstrual blood flows backward, passes through the fallopian tubes, and enters the pelvic cavity—what doctors call retrograde menstruation. This backward flow can carry endometrial tissue to places far afield of the uterus, such as the digestive tract, lungs, and even the brain. It's been proposed that these transplants set up shop in their new locations, where they continue to respond to the cyclical influences of estrogen by swelling and bleeding each month, and causing the pain associated with endo.

There's an issue, though: Almost all women experience retrograde menstruation, so according to Patzkowsky, doctors don't know why some get endo and others don't. Some researchers think an imbalance in reproductive hormones might be to blame, while others suggest that a faulty immune system—which would normally curb the growth of endometrial cells outside their normal locale—may be responsible. Risk factors for endo include long periods (more than seven days), short cycles (less than 27 days), and having a family member who has endo.

3. PAIN IS A CLASSIC SYMPTOM …

Some women with endo feel pain in the back or chest, and others experience discomfort during or after sex or have painful, heavy periods. Since the pelvic region serves as a crossroads for a variety of organ systems, discomfort when urinating or having bowel movements is common. Some endo sufferers have a concurrent—but not the same—condition called adenomyosis, in which endometrial tissues grow into the muscular wall of the uterus. Endo can also cause large painful cysts on a woman's ovaries, called endometriomas. Often called "chocolate cysts," due to their dark, chocolatey appearance, endometriomas are noncancerous, fluid-filled growths that typically form deep within the ovaries. Mysteriously, some women experience no pain at all, Patzkowsky says. One study found that nearly 90 percent of women with endo experience depression and anxiety. According to some mice studies, it's possible that endo reprograms the brain, making women more vulnerable to mental health problems—although other researchers think the depression and anxiety are more to do with the pain and fertility problems.

4. … AND SOME WOMEN CAN EVEN EXPERIENCE INFERTILITY.

As many as half of all infertile women have endo, and up to 50 percent of women with endo are infertile—but doctors aren't sure how the condition affects a woman's ability to get pregnant. Endo lesions can block or scar a woman's reproductive organs, making it harder for the egg and sperm to meet up, but it's also possible that the scarring prevents the endometrium from developing properly each month, preventing implantation. Other theories suggest that the inflammatory milieu that accompanies endo creates an unfavorable environment for pregnancy.

5. MANY WOMEN WITH ENDO GO UNDIAGNOSED.

Up to one in 10 of all pubescent girls and women worldwide have endo. In the U.S., that translates to some 6.5 million females of reproductive age. Some experts say the number is higher because many women go undiagnosed. That's because some women confuse the pain of endometriosis with normal period pain, and others just don't talk about it. On the other hand, "Not all menstrual pain is endo," Patzkowsky says.

6. THERE ARE SEVERAL WAYS TO LOOK FOR ENDO, BUT ONLY ONE WAY TO BE SURE.

The first step is usually a pelvic exam. The doctor will feel for cysts or areas of scar tissue behind a woman's uterus, in an area called the Pouch of Douglas, a common site of endometrial lesions. If the doctor suspects endo, an ultrasound or MRI will often provide more information. The only sure way to diagnose endo, however, is laparoscopy with biopsy—a minimally invasive surgical procedure that allows a doctor to view a woman's internal organs using a small camera and take tissue samples (biopsies) for testing. Laparoscopy is considered the gold standard of endo diagnosis.

Diagnosis also involves determining the stage of the disease based upon the location, size, and depth of the lesions; the presence and size of endometriomas in the ovaries; and the presence of scar tissue. Most women have mild scarring and only superficial lesions, indicating that they have minimal or mild endo. Women with endometriomas and more severe scarring have moderate or severe endometriosis.

In an odd twist, "The stages don’t necessarily correlate with the types of symptoms or degree of pain a woman experiences," Patzkowsky says. For some women, a further element of diagnosis is determining her likelihood of getting pregnant, using the Endometriosis Fertility Index [PDF], a scoring system that considers a woman's age, reproductive and infertility history, and endo severity to predict her chances of conceiving.

7. TREATMENTS AIM TO REDUCE THE SIZE OF THE LESIONS.

If a woman with endo doesn't want to get pregnant, her doctor might prescribe hormonal treatments to reduce the amount of estrogen in her body. Extended cycle and continuous cycle birth control methods reduce or eliminate the number of periods a woman has, blocking the cyclical effects of estrogen. If pregnancy is the goal, however, a woman's doctor might briefly prescribe gonadotropin-releasing hormone agonists—hormone-blocking drugs that induce a sort of temporary menopause that stops a woman's production of estrogen and can often decrease the size of endo lesions. The treatment period typically lasts several weeks to a few months. When the treatment ends, the woman's body will begin to produce estrogen again, providing her a brief window of time in which she has a chance of getting pregnant before the lesions return.

Surgery to remove endo lesions is also an option, but only in severe cases or in situations when a woman can't take hormonal therapies or hormones haven't been successful in the past.

8. ENDO IS COSTLY, AND NOT JUST IN DOLLARS.

Quality-of-life assessments don't accurately capture the toll endo takes on women: Findings from a 2011 study of more than 1400 women with endo found that women lost more than 11 hours of work each week chiefly due to reduced productivity (not absence). A second study, conducted in 2012, estimated that endo costs an affected woman more than $10,000 per year, comparable to diabetes, Crohn's disease, or rheumatoid arthritis. Endo also interferes with sexual pleasure and satisfaction.

9. AN ENDO DIAGNOSIS DOESN'T HAVE TO FEEL LIKE THE END OF THE WORLD.

Many women with endo lead full lives. Northern Irish politician Naomi Long and Australian swimmer Emily Seebohm, an Olympic gold medalist, have shared their personal trials with the condition. Women with endo get pregnant, too, and often have successful pregnancies. "Endo does not equal infertility," Patzkowsky says. Women with endo often find that support groups are helpful, and there's even an app (or two) to help. One advocacy group has organized a worldwide endo march to raise awareness of the disease and promote research.

10. NEW ENDO RESEARCH IS FOCUSED ON IDENTIFYING BIOMARKERS.

Future endo research is focused on not only furthering understanding of the causes and other aspects of the disease, but also on developing non-hormonal therapies to aid in treatment and identifying biomarkers—indicators in blood or easily accessible tissue samples—that can speed diagnosis. Some scientists liken endo to cancer because it has different subtypes that may have different causes, requiring an integrated approach to understanding the genetic, hormonal, metabolic, and molecular factors that influence endo development and progression.

Looking to Downsize? You Can Buy a 5-Room DIY Cabin on Amazon for Less Than $33,000

Five rooms of one's own.
Five rooms of one's own.
Allwood/Amazon

If you’ve already mastered DIY houses for birds and dogs, maybe it’s time you built one for yourself.

As Simplemost reports, there are a number of house kits that you can order on Amazon, and the Allwood Avalon Cabin Kit is one of the quaintest—and, at $32,990, most affordable—options. The 540-square-foot structure has enough space for a kitchen, a bathroom, a bedroom, and a sitting room—and there’s an additional 218-square-foot loft with the potential to be the coziest reading nook of all time.

You can opt for three larger rooms if you're willing to skip the kitchen and bathroom.Allwood/Amazon

The construction process might not be a great idea for someone who’s never picked up a hammer, but you don’t need an architectural degree to tackle it. Step-by-step instructions and all materials are included, so it’s a little like a high-level IKEA project. According to the Amazon listing, it takes two adults about a week to complete. Since the Nordic wood walls are reinforced with steel rods, the house can withstand winds up to 120 mph, and you can pay an extra $1000 to upgrade from double-glass windows and doors to triple-glass for added fortification.

Sadly, the cool ceiling lamp is not included.Allwood/Amazon

Though everything you need for the shell of the house comes in the kit, you will need to purchase whatever goes inside it: toilet, shower, sink, stove, insulation, and all other furnishings. You can also customize the blueprint to fit your own plans for the space; maybe, for example, you’re going to use the house as a small event venue, and you’d rather have two or three large, airy rooms and no kitchen or bedroom.

Intrigued? Find out more here.

[h/t Simplemost]

This article contains affiliate links to products selected by our editors. Mental Floss may receive a commission for purchases made through these links.

Bad Blood: The Hidden Horror of the Tuskegee Syphilis Study

A doctor draws blood from one of the study’s subjects.
A doctor draws blood from one of the study’s subjects.

In September of 1932, Public Health Service officials visited Tuskegee, Alabama, where they recruited 600 Black men to receive treatment for “bad blood.” The men didn’t realize they had become unwitting participants in one of the most controversial medical studies in recent times.

Of the study’s participants, 399 of the men were suffering from the advanced stages of syphilis, which at that time was incurable, while the other 201 served as controls. Under the guise of offering medical treatment, the Public Health Service set out to study the effects of untreated syphilis in Black men. Doctors enticed the poor, mostly illiterate Macon County residents to take part in return for free medical examinations, rides to the clinic, and hot meals on examination days. For the participants, many of whom had never even visited a doctor, the offer seemed too good to refuse.

A Secretive Study

Nurse Eunice Rivers interacts with a few members of the study.National Archives/Center for Disease Control // Public Domain

Deception was integral to the Tuskegee Syphilis Study. The men did not know they were actually participating in an experiment, and were kept in the dark about the true nature of their diagnosis. They were also unaware they weren’t receiving treatment at all: The drugs they were administered were either inadequate or completely ineffective. At one point, they were even given diagnostic spinal taps, a painful and often complex procedure the doctors referred to as a “special treatment.”

Though the study was originally meant to last for six months, the Public Health Service decided to continue it when the participating doctors deemed that only autopsies could determine the damage the disease caused. In other words, the doctors would keep tabs on the men until they died.

To ensure nothing would interfere with the experiment, doctors in Macon County were given a list of the subjects and instructed to refer them to the Public Health Service if they sought medical treatment. The Public Health Service even hired Eunice Rivers, a Black nurse, to maintain contact with the men and ensure their continued participation. All the while, the experiment's subjects were left to degenerate—when untreated, syphilis can cause bone deformations, heart disease, blindness, and deafness.

A medical breakthrough came in 1947, when penicillin became the standard treatment for syphilis. Despite this, the doctors involved in the Tuskegee study opted not to treat the men so they could continue to monitor the disease's natural progression. As historian Dr. Crystal Sanders tells Mental Floss in an email, “By withholding treatment, doctors subjected these men, their spouses, and their offspring to serious health problems and death.”

The End of the Experiment

None of the medical professionals involved in the decades-long study admitted to any wrongdoing.National Archives/Center for Disease Control // Public Domain

The study was not without its critics. When Public Health Service official Peter Buxtun learned about the experiment in 1966, he expressed grave moral concerns to the Centers for Disease Control. After numerous organizations, doctors, and scientists still opposed ending the study, Buxtun took matters into his own hands and leaked information about the experiment to Associated Press journalist Jean Heller.

On July 26, 1972, The New York Times ran a front page story exposing the study. Public outrage immediately ensued, but by then the damage was done. At least seven of the men had died from syphilis, while more than 150 had died from heart failure, a condition commonly linked to the infection. Forty spouses had also contracted syphilis, and 19 children were born with the condition. Some of the infected women, who believed the study was legitimate medical care, were turned away when they attempted to enroll. 

Once the study became public knowledge, the Department of Health, Education, and Welfare promptly ruled that the 40-year-long experiment come to an immediate end. Yet despite the national outcry, none of the medical professionals involved in the study were prosecuted. “They maintained that they had done nothing wrong,” Sanders explains. “Some even went so far as to assert that the Black male subjects would never have been treated anyway given their financial circumstances, so their study did not harm them.”

With the experiment finally over, the government appointed Dr. Vernal G. Cave to lead a team of Black doctors to investigate. He found that while the experiment was being carried out, at least 16 articles about it had been published in various medical journals. So why had it taken so long to bring the study to an end?

“The subjects were Black and poor and did not warrant much attention from the powers that be,” Sanders says. “Additionally, very few people with the political and social capital to ask questions would have been suspicious of a study underwritten by the federal government and carried out by medical practitioners who had the respect of the local white society.”

A Public Reckoning

In 1973, the National Association for the Advancement of Colored People (NAACP) filed a class action lawsuit on behalf of the study's participants and their families, and the following year a $10 million out-of-court settlement was reached. The U.S. government also agreed to provide free medical treatment to the study’s surviving participants, as well as their family members who became infected during the experiment.

The story of the Tuskegee Syphilis Study was brought to the screen 14 years later in the made-for-TV movie Miss Evers’ Boys. When the study’s participants saw the film, they were disappointed by its portrayal of the series of events. It suggested the men had received treatment for their condition, and shifted the blame from the federal government to a fictitious Black doctor and a Black nurse. As a response to the film, the participants enlisted the help of attorney Fred Gray to make sure the nation understood the truth behind the study.

In March 1997, Gray wrote a letter to president Bill Clinton requesting the victims receive a formal apology. Two months later, and more than 50 years after the experiment began, Clinton delivered his apology in a speech at the White House. By that time, only eight of the men were still alive.

“The United States government did something that was wrong — deeply, profoundly, morally wrong,” Clinton said. “What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry.”

Though the last survivor of the study died in 2004, the experiment has had a lasting effect on the African-American community. A 2016 study found that after the Tuskegee study was exposed, the life expectancy of Black men decreased by 1.5 years, with a marked decrease in patient-physician interactions [PDF]. “There is a long history of poor Black people seeking preventative care and getting anything but that,” Sanders says. “I wholeheartedly believe that there is a connection between present-day African American distrust of the medical field and the Tuskegee Syphilis Experiment.”