5 Frustrating Facts About Endometriosis... and How to Deal

Endometriosis can be described in one word: painful. There's the obvious physical pain that accompanies the disorder, ranging from pelvic pain to awful periods (dysmenorrhea) to less-than-pleasant intercourse. Then there's the emotional pain.

The pain and suffering that go along with having endometriosis can impact your life in more ways than one: isolating yourself from friends and family due to unexpected bouts of physical pain, not being able to participate in sports or take part in day-to-day activities, having anxiety over work because of absences and, of course, experiencing infertility.

I feel your pain. In 2007, I was diagnosed with endometriosis and had a laparoscopy to remove it. High school, college, and then work were very difficult because the pain was often so overwhelming I'd black out. This became such a common occurrence that I knew when it was coming and trained my body to collapse in the way that caused the least amount of damage.

And I know, all too well, the struggle to have a baby.

But an endometriosis diagnosis doesn't have to be a life sentence. Here are five frustrating facts about endometriosis and how to best deal with them:

1. Endometriosis affects an estimated one in 10 women during their reproductive years, which is approximately 176 million women worldwide.

In other words, it's a fairly common health problem. So, what is endometriosis exactly?

Endometriosis, or "endo," is a painful disorder in which tissue that normally lines the inside of your uterus -- the endometrium -- grows outside of your uterus and on other areas in your body where it doesn't belong. Most often, endometriosis is found on the ovaries, fallopian tubes, tissues that hold the uterus in place and the outer surface of the uterus.

How to deal: If you're one of the 176 million women suffering from endometriosis, it's important to realize that this disorder doesn't define you, the relationships you have or the life you live. Taking that all-important first step is the key to better managing endometriosis.

2. On average in the U.S., it takes 10 years from symptom onset to receive an accurate diagnosis of endometriosis.

I was one of those women. Doctor after doctor told me to "suck it up" and "that's just how periods are" before my endo was discovered on accident, while I was having surgery for another issue.

The number one symptom of endometriosis is pain, particularly pelvic pain that coincides with menstruation or intercourse. But the nature of pain -- how it affects particular individuals and how well it's managed -- is largely subjective, which can make it difficult to properly diagnose. Some women don't even realize they have endometriosis until they try to conceive and experience difficulties.

How to deal: When it comes to your body, you know it best. If you're experiencing what you believe to be abnormal pelvic pain, see your doctor. A pelvic exam can indicate high suspicion of endometriosis and an ultrasound might be able to identify cysts, but a laparoscopy is the only true way to confirm endometriosis.

3. Women who have a close female relative with endometriosis are five to seven times more like to have it themselves.

We don't yet know the specific cause of endometriosis, but we do know there may be a genetic component. Knowing that women with a close female relative with endometriosis raises their odds of having it themselves makes it a little easier to diagnose in some women.

How to deal: Even if you're not experiencing common symptoms of endometriosis (painful periods or intercourse, infertility), if you have or had a relative with endo, consult with your doctor. While you can't prevent it, you can reduce your chances of developing it by lowering the levels of estrogen in your body by:

  • Using hormonal birth control methods (pills, patches or rings with lower doses of estrogen)
  • Exercising regularly
  • Avoiding large amounts of alcohol
  • Avoiding large amounts of caffeine

4. Women with endometriosis have a significantly higher risk of early pregnancy complications.

In fact, according to this analysis of more than 14,000 women by the European Society of Human Reproduction and Embryology, women with endometriosis had a 76 percent higher risk for miscarriage and nearly three times higher risk for ectopic pregnancy.

While I knew endometriosis could pose a problem when trying to get pregnant, I definitely didn't realize just how much. To put things into perspective, my husband and I are now in our fourth year of trying to start a family. During that time, I've had four miscarriages (one of which was ectopic), seven IVF transfers, three IVF egg retrievals, and lost twins during delivery.

How to deal: While women with endometriosis have been known to have issues getting pregnant, Dr. Allison Rodgers of the Fertility Centers of Illinois explains in an interview that, for patients going through IVF, patients do just as well with an endometriosis diagnosis as those with other diagnoses. In Rodgers' experience, most patients go on to have healthy, successful pregnancies.

In other words, don't let this study scare you too much. It was large, yes, but it only opened the door to more questions.


5. There is no known cause or cure for endometriosis.

Unfortunately, there is no known cause or cure for endometriosis. For women suffering from the crippling pain and infertility that often accompanies this disorder, that can be difficult to cope with. But, despite having to live with endo, it doesn't have to be a life sentence.

How to deal: While there's no cure for endometriosis, women can still live perfectly normal lives and have healthy, successful pregnancies. The key is to identify how to best manage your pain and/or infertility.

Treatment depends on how severe your symptoms are and whether you plan to get pregnant. If you want to deal with the pain only, hormone therapy (via birth control or an intrauterine device) is typically the way to go. Unfortunately, that can impede getting pregnant. In that case, infertility treatments (such as IVF) and/or having a laparoscopy can help.

Which of these facts resonates most with you? Share your thoughts in the comments!