Almost every woman has experienced cramps during their time of the month. In fact, many of us think it’s normal. But what if your period pain was so severe that it stopped you from exercising, going to work, or even kept you in bed? Is it “normal” then?
To answer the latter: no, it’s not. These are often symptomatic of endometriosis, a disease that’s not to be mistaken for regular dysmenorrhea. (It’s a whole different animal!) Endometriosis occurs when the tissue lining the uterus grows where it shouldn’t—on the ovaries, fallopian tubes, or intestines. This can lead to terrible cramps, long and heavy periods, and uncomfortable bowel movements. Some women even report infertility.

Unfortunately, even if it affects one in every 10 women, many go undiagnosed. Which is why it’s more important than ever to raise awareness of the common disorder. Here are 10 facts you probably didn’t know about endometriosis, but should.

1. Millions of women around the world have endometriosis
Endometriosis affects 1 in every 10 women around the world. This happens when tissue that normally lines the inside of your uterus (A.K.A., the endometrium) grows outside your uterus. Displaced endometrial tissue continues to act as it normally would: it thickens, breaks down, and bleeds with each menstrual cycle. However, because this displaced tissue has no way to exit your body, it becomes trapped. This results in pain, inflammation, and the formation of nodules, cysts, and scar tissue.

2. The symptoms are excruciatingly painful.
The greatest indicator that you might have endometriosis is prolonged pelvic pain (also known as that feeling when your dysmenorrhea just won’t go away). But other symptoms include:

  • Painful periods
  • Pain in the lower abdomen before and during menstruation
  • Cramps one or two weeks around menstruation
  • Heavy menstrual bleeding or bleeding between periods
  • Pain following sexual intercourse
  • Uncomfortable bowel movements
  • Lower back pain that may occur at any time during your menstrual cycle
  • Infertility

3. If you have endometriosis, it doesn’t mean you can’t have a baby.
Sure, it’s estimated that around half of women with endometriosis have difficulty getting pregnant. The good news: it also means that the other 50% don’t have trouble. It’s dependent on loads of different factors, including the severity of your endometriosis and your age. If you want to have a baby and are concerned that your endometriosis is affecting your chances, speak to your doctor who can suggest the best course of action for you and your partner.

4. On the other hand, you might also have no visible symptoms.
While pain is a common symptom of endometriosis, this is not always the case. That’s why it’s important that you get regular gynecological exams, which will allow your doctor to monitor any new changes in your body.

5. Diagnosis isn’t so simple.
Diagnosing endometriosis can be quite tricky because it shares symptoms with other conditions stemming from that area: from irritable bowel syndrome (IBS) to the more popular polycystic ovarian syndrome (PCOS).

6. There is no known cause of endometriosis yet.
Unfortunately, there is no known cause of endometriosis for now. But there are a few noteworthy possibilities based from scientific research. According to the NHS, the most widely accepted theory is the womb lining doesn’t leave the body properly during a period and embeds itself on the organs of the pelvis, causing severe pain. This is known as retrograde menstruation, but doesn’t explain why the condition can occur in women who have had a hysterectomy. Other studies suggests that it may actually be an autoimmune disease. There’s also speculation about endometriosis being hereditary, too!

7. And there is no known cure.
The pain may be managed with painkillers and hormone medication, but because endometriosis can strike at the most random times, it can interfere with every aspect of your life: from your sexual life to your career and even your mental health. Ask your doctor how you can explain your situation best to family, friends, and co-workers, so that they can develop a better understanding of your pain.

8. There are medications to ease the symptoms.
Luckily, there are medications available to help reduce your pain and manage any potential complications. Your doctor may first try conservative treatments such as supplemental hormones, hormone contraceptives, gonadotropin-releasing hormone (GnRH) agonists and antagonists (to halt the production of estrogens that stimulate the ovary), or Danazol (A.K.A., a man-made steroid). But if the pain persists in spite of all this…

9. There’s surgery treatment for endometriosis.
Your doctor may then recommend surgery if your condition doesn’t improve. The first is a laparoscopy, a minimally invasive surgery, which is used to both visualize, diagnose, and remove the endometrial tissue. Your surgeon will make small incisions in your abdomen to remove the lining growths surgically or to burn them. Lasers are commonly used these days as a way to destroy the displaced tissue.

If the symptoms persist? Your last resort is a total hysterectomy, meaning your surgeon will remove your uterus and cervix. Your doctor will also remove your ovaries because they produce estrogen, and estrogen causes the growth of endometrial tissue.

10. Celebrities like Lena Dunham and Daisy Ridley have been open about their struggles with endometriosis.
You’re not alone! Lena Dunham keeps her followers updated with what it’s like to live with the condition, and has even posted about her battle scars on Instagram. While Daisy Ridley has since deleted her Instagram account, she openly spoke about her frustrations with endometriosis from age 15.

Daisy’s advice? “My point is, to any of you who are suffering with anything, go to a doctor; pay for a specialist; get your hormones tested; get allergy testing; keep on top of how your body is feeling and don’t worry about sounding like a hypochondriac. From your head to the tips of your toes, we only have one body, let us all make sure ours is working in tip-top condition, and take help if it’s needed.”

We couldn’t have put it better ourselves!

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