Approximately 1 in 10 women suffer from endometriosis, a painful disease that can leave women unable to go about their daily functions.
It occurs when the tissues that often grows inside the uterus instead grows outside: like in the fallopian tubes, the bladder or even the eyeball. Amy Benjamin, a professor with the University of Rochester as well as a practicing gynecologist, said some studies estimate as much as 20 percent of the female population is living with endometriosis, and many of them might not know it.
R&B Singer Monica has been speaking out about her struggle with the disease. Last year, she posted to her Instagram that after suffering from a number of bodily pains, her doctor decided to investigate a lot deeper. She ended up needing 8-hour surgery to extract the tissues.
“My reason for sharing is because we, as women, are built to be warriors and we will ignore something that seems so simple that can be so complex. Your uterine health is very important. I spoke up about it so people out there who are going through the same thing know that they’re not alone,” she told PEOPLE magazine.
Experts say most women don’t know they have the disease.
In life we have to count it all joy and know the unplanned may be in his plan💓May 30th I had an almost 8 hour surgery to remove my endometriosis (which I didn’t know I had until two weeks prior) , 2 cysts, fibroids & a hernia that all were making me very sick…I’ve known something was wrong but I also knew victory & better health would be near again!! Thank you Dr. Ceana Nezhat & Northside Hospital Staff #RoadToRecovery #CountItAllJoy #ALLSMILESALLTHEWAY New Hair Color (Requested By my husband LOL) done by: @touchedbyjuels Cut: @deedeemetzger Styled by: @kayhairnista Makeup by the face slayer : @eva_thediva_kim Photo: @dogvisionpictures
And there are a lot of reasons why. A good number of women are asymptomatic, Benjamin said, so they often don’t discover they have the disease until they’re undergoing a surgery like getting their tubes tied.
Other women might not realize they have endometriosis simply because they don’t realize the symptoms they have point to endometriosis. Pain for women is often normalized, particularly period cramping. Benjamin said the pain from endometriosis might not feel any different than period cramping, but it won’t subside when taking medications like Midol or Ibuprofen.
“If you’re having painful periods that aren’t responding to over the counter medications, then it’s worth having a conversation with your gynecologist,” – Benjamin
But another symptom of endometriosis is also normalized: painful sex.
“If you have those periods that are painful or out of proportion to what you’d expect, then it’s worth a conversation with your gynecologist,” she said. “If you’re also having pain with intercouse, that’s not normal either. A lot of people normalize that. Painful intercourse is not normal.”
Another common symptom of endometriosis is pain that begins before a woman’s period, continues past when the period ends, or becomes chronic. Even chronic pain may not cause a woman to go to the gynecologist to determine if they have endometriosis or another issue.
“If you’re life is such that getting to the doctor is difficult and you have a lot going on and are worried about putting food on the table for kids, your drive to get to the doctor for painful periods is less than if you have an otherwise secure life,” Benjamin explained. “I do think that impacts the people who seek care and the patients who wind up being diagnosed in general.”
This means there are still some unknowns when it comes to endometriosis. Benjamin said research she’s read has stated endometriosis is more common in caucasian women, but like most diseases and disorders, that could be because minority populations are not as well-studied, so she wonders how defninitive that information is.
Doctors are also not certain what causes endometriosis. It typically affects women between the ages of 14 and 40, when they are of childbearing age, but there’s no telling why some women experience no symptoms while others have debilitating pain. There’s also no explanation as to why some women will develop endometriosis in their pelvis, ovaries or uterus – where it’s most common – while others develop it in their eyeballs or belly button.
And there’s no way to prevent it.
The only way to tell for certain someone has endometriosis is through a surgical removal of the endometriosis and then a culture of the tissue, but Benjamin said doctors don’t have to definitively diagnose endometriosis to begin to treat for the pain.
Because endometriosis is related to the reproductive process for women, managing it often involves suppressing ovulation through medications like birth control pills. The endometriosis can also be surgically removed, but there’s no guarantee the endometriosis won’t grow back eventually, Benjamin said.
The only way to completely treat and get rid of endometriosis is through a full hysterectomy with removal of the ovaries. Benjamin said few women opt for this treatment plan as it would prevent them from having kids, something most women can still do while they have endometriosis, though there are some cases of infertility caused by endometriosis.
Though living with endometriosis untreated is not life threatening, it can make life incredibly uncomfortable. Benjamin spoke of women who completely cut out intimate relationships due to the pain during intercourse, or women who have chronic pain so severe they are unable to complete day-to-day functions.
The important thing is to stop normalizing pain for women and have a conversation with your doctor if you do experience any of the symptoms. Your painful period or sex could be a non-threatening case of endometriosis, or it could be something more serious.
“If you’re having painful periods that aren’t responding to over the counter medications, then it’s worth having a conversation with your gynecologist,” Benjamin said.