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I’ve Got What? Figuring Out Endometriosis

Your physician just told you that you have endometriosis. Say what?

Endometriosis is one of those health issues that a lot of women have heard of—maybe you know someone who’s had it—but you don’t know exactly what it means.

Here’s what’s going on: If you have endometriosis, the lining of your uterus (womb) is growing outside of the uterus. Think of it like when you bake a cake, take it out of the oven, and notice that the cake has baked over the side of the pan.

Endometriosis is fairly common—it affects more than 11% of American women ages 15 to 44. However, that number could be even higher. It can be hard to diagnose, since women can have endometriosis and not have any symptoms.

Side note: There used to be a misconception that Black women don’t get endometriosis as often as white women. But that’s not true—Black women are affected by endometriosis just as much as white women. However, Black women are more likely to be misdiagnosed, with providers thinking pain is due to something else.

Now that you have your diagnosis, what does endometriosis mean for you?

Here are 5 things to know about endometriosis.


1. It Can Be A (Literal) Pain In The You-Know-What

Not going to lie—pain is the most common sign of endometriosis. It could feel like menstrual cramps, or it could be long-term pain in the pelvis, lower back, or abdomen.

The tissue that grows outside the uterus bleeds the same way your uterus does each month. But unlike blood coming from the uterus, the blood coming from the tissue outside the uterus can’t easily get out of the body. That leads to swelling and pain.

And we’re not just talking about the pain that can come with menstrual cramps. We’re talking major, I-hate-being-a-woman, pain.

No, it is not “just” cramps.

Pain doesn’t just occur during your time of the month. It can also happen during sex.

Remember the cake that grew outside of the pan? When the penis hits that overflowing cake, you might feel pain. It can even last up to two days afterwards. Ugh.

Also, some hormone therapies used to treat endometriosis come with a side of vaginal dryness. And a dry vagina can add to painful sex. That means it may be time to invest in a nice bottle of lube.


2. You Might Be Able To Stop The Pain

The scary news: There’s no cure for endometriosis.

But the good news is there are plenty of ways to deal with the pain.

Your gynecologist or primary care provider can help you come up with the best treatment plan to keep pain at bay. The most common treatments include:

  • Hormonal birth control (pills or intrauterine device): They can make your period more regular, lighter, shorter, and way less painful. What woman wouldn’t want that?
  • Gonadotropin-releasing hormone (GnRH) agonist: If you’re hoping to get pregnant, your physician may put you on this. As it controls the growth of your endometriosis, it puts your body into a sort of temporary menopause. Once you get off of the GnRH agonist, your period will come back—and you may have a higher likelihood of making that baby.
  • Pain relievers: Over-the-counter medications like ibuprofen may be all you need for less pain during periods or sex.
  • Surgery: If your symptoms are severe and hormones aren’t giving you any relief, or if you’re having trouble getting pregnant, your physician may recommend surgery to remove patches of endometriosis.

You can also try complementary and holistic medicine—as long as you clear it with your physician, first. Women with endometriosis have given these complementary and holistic treatments a big thumbs-up:

  • Massage
  • Acupuncture
  • Meditation
  • Herbs (cinnamon twig, licorice root)
  • Supplements (vitamin B1, magnesium, omega-3 fatty acids)


3. Talk About It

If sex is causing you pain, you might decide to just Netflix and chill. Without the chill. And that can be frustrating for everyone—you, your partner, and your friends who are noticing that you’re a bit salty lately.

This is where communication is key.

The fear of pain may cause you to pull back, which can make your partner feel like it’s his fault, or like you’re not interested. The two of you could end up with resentment, frustration, and a rocky relationship.

Make sure he (or she) knows that this is truly a case of, “it’s not you, it’s me” and that your feelings towards him have nothing to do with it.

Now, there is some news your partner may appreciate. You don’t have to totally give up on having sex. In fact, this might be a good time to try spicing things up. Experimenting with different positions can help you find comfortable ways to enjoy sex.


4. It May Affect The Baby-Making

Read this twice: Endometriosis does not equal infertility. Many women with endometriosis conceive on their own (even if it takes a little bit longer). So, don’t panic just yet.

However, there is a link between endometriosis and fertility challenges. While we don’t have a good estimate on the percentage of women with endometriosis who experience infertility, we do know that about 50% of women with infertility do have endometriosis.

But seriously, don’t freak out.

Even if you can’t conceive naturally, you can still get pregnant. Just like other women who have trouble getting pregnant, women with endometriosis may be able to use in vitro fertilization (IVF). During IVF, a woman’s eggs and a man’s sperm are taken out of the body, combined in a lab dish, and implanted into the uterus.

Also, women with endometriosis who use donor eggs instead of their own still have a high chance of success.


5. You (Might) Get It From Your Mama

This one’s for the mothers.

Ladies—endometriosis can run in families. Women with endometriosis are more likely to have a daughter who also develops it.

Although it’s usually found in women in their 30s and 40s, any woman with a menstrual period can develop it. When your daughter enters the wonderful world of periods, look out for signs of endometriosis.

Again, the biggest sign of endometriosis is pain. Her first period or two might be a bit painful (remember your first?). But intense, severe menstrual pain is not normal, and could be a sign of endometriosis.

Also, be on the lookout for these symptoms around the time of her periods:

  • Heavy or long periods (most of the time, not just once in awhile)
  • Problems with urinating or bowel movements
  • Significant lower back pain (like, she can’t get out of bed)
  • Worsening of fatigue, migraines, or allergies
  • Crippling pain (and she’s not being dramatic)

Do you know someone who struggles with really painful, heavy menstrual periods or who has just been diagnosed with endometriosis? First, urge her to see a gynecologist. Yes, that’s a very awkward conversation. But if she trusted you enough to bring it up, help her feel more at ease and send her this primer first.