Huffpost Women

I Have What?! Your Guide To Endometriosis

Posted: Updated:
CRAMPS
Alamy

Anna Miller | The Daily Muse

For the sake of any male readers out there, I'm going to go ahead and put this disclaimer up front: I will be talking about periods. And don't mean the punctuation.

Ok ladies, it's just us now. Don't you just love a good girly convo about cramps, bloating, mood swings, and Motrin? Let me guess: No. Though guys may think the monthly visit from Aunt Flo is all we talk about in the safety of our slumber parties, in reality, the topic doesn't come up often -- and in most cases, that's just fine.

But in other cases, the lack of tampon talk is hurting us. In fact, it could be part of the reason why endometriosis, a condition affecting about one in 10 American women, goes largely undiagnosed.

If you've heard of endometriosis, it's probably because you have it. Or, because you're an avid Top Chef viewer and know that the show's stunning host, Padma Lakshmi, co-founded the Endometriosis Foundation of America after suffering from the disease for decades.

But most of us have the same reaction: endo-what? Even my Gmail account underlined the word as a spelling error. It's time we all got informed about this often debilitating, but treatable, disease. Listen up, Google.

What is endometriosis, anyway?

To understand endo, you first need to understand menstruation. Here's a refresher: You get your period when your body sheds the lining of your uterus, which has been built up over the month to support the growth of a potential baby. If you don't get pregnant, there's no need for that cushion. Et voilà! Your period.

Now imagine that some of that same tissue that lines your uterus (called the endometrium) gets lost and winds up growing somewhere else -- perhaps on your ovaries, bladder, rectum, or abdomen.

When it's that time of the month, the lost cells react just as if they were in your uterus: They bleed and try to shed, but they have nowhere to go. If you have endometriosis, your body fights against this misplaced tissue, which can cause inflammation, scarring, lesions, and, for many women, severe pelvic pain and infertility.

Exactly how and when the cells get lost isn't fully understood, and the appearance of the growth can be different inside different women. "It can look like ivy, it can be like an iceberg with a little on the surface but a whole lot underneath, or it can be like termites -- it's not visible at all but it's causing mayhem," explains Patricia Smith, an obstetrician-gynecologist at the George Washington University Medical Faculty Associates. "It's a strange condition because it can look like many different things."

How do you get endo?

We know what endo is not: It's not an STD, it's not contagious, and it doesn't seem to be preventable. Unfortunately, it's not so clear what the disease actually is. But many experts believe it has something to do with your immune system, since it's characterized by an exaggerated inflammatory reaction to the lost cells and is associated with other autoimmune disorders like thyroid disease.

It also seems to have a genetic component -- you're seven times more likely to have the disease if your mother does, according to the Endometriosis Foundation of America.

How do I know if I have it?

My friend, let's call her Candy (her request!), was in her high school psychology class when the pain from her period got so bad that she walked out, passed out in the hall, and got a concussion. About a year later, it happened again at a football game. Both times, she landed in the hospital, but was dismissed with no consideration of endometriosis.

"The pain is unbearable. It's blinding," says Candy, who has missed significant portions of school, work, and family events -- not to mention fun -- due to the disease.

But not all women with endometriosis have such severe period-related pain. Other symptoms can include painful sex, stomach or lower back pain, pain when going to the bathroom (sometimes mistaken for irritable bowel syndrome), or all of the above.

Some women have no pain at all and many, including Candy's mom, don't know they have endometriosis until they try to get pregnant-and try, and try, and try. Because endometriosis is a top cause of infertility for women, recognizing it before you want to make a baby makes a difference.

I think I have endo. Now what do I do?

If you manage to get a formal diagnosis of endometriosis -- which usually involves a minimally invasive surgical procedure of the abdomen called a laparoscopy -- you're already ahead of the gang: The average woman with the disease goes 10 years before getting the correct diagnosis. Candy saw several doctors over many years before finding one who recognized endometriosis as the cause of her pain and treated her for it. "I thought I was crazy," she remembers. "Like, why doesn’t anyone else have this problem?"

"Women put up with a lot of pain before they get help," adds Smith. "They don't want to complain, they don't want to think that things are weird about them -- especially at a young age."

But getting help is important. Although the condition is chronic -- it's never completely cured -- it can be treated, its pain managed, and its fertility -- compromising effects diminished.

For Candy and other women, birth control pills can suppress the monthly cycle and ease the pain. Others opt for surgery to remove the stray tissue altogether. While surgery’s not a magic bullet, because the chemical abnormalities associated with the disease can still interfere with conception and the growths can return, many women (including Candy’s mom and Lakshmi, the Top Chef wonder woman) can and do get pregnant with endo.

Whether or not you have the disease, the most important thing you can do is to start talking. Dishing about your cycle may help you or a friend recognize the difference between normal cramping and something abnormal, like endometriosis. And that's a conversation worth the squirms. Period.

This article was originally published on The Daily Muse.

More From The Daily Muse :

Facing the Impossible: Completing an Ironman with Cancer

Birth Control in the News: What You Need to Know

3 Surprising Things That Can Mess Up Your Meds