There are many myths about endometriosis that you might encounter as you seek information about this chronic disease. These myths can interfere with timely diagnosis and treatment of the disease, which affects about 10% of women of childbearing age. We’ll share some of these myths, the facts, and what you can do if you suspect you have endometriosis.

What is Endometriosis?

Endometriosis occurs when the tissue like the lining inside the uterus grows outside the uterus, usually in the abdomen. The presence of this tissue outside the womb causes pain, inflammation, fatigue, scar tissue, and possibly infertility. Endometriosis lesions can occur in a wide variety of places:

  • throughout the abdomen on the ovaries, fallopian tubes, outer surfaces of the uterus
  • the area between the vagina and rectum
  • the lining of the pelvic cavity
  • the bladder, intestines, vagina, and cervix.

These lesions have even been found (less commonly) outside the abdomen in the lung, arm, and thighs.

The Common Myths about Endometriosis

As with many chronic diseases, myths abound. Endometriosis is no exception. Which of these myths have you heard? Which did you believe? Do the facts surprise you?

Myth 1: The tampon myth

Using tampons or menstrual cups increases the risk for endometriosis because it causes the menstrual flow to back up into the fallopian tubes and into the abdomen.

Fact: Endometriosis is theorized to be caused by menstrual tissue backing up during menstruation into the uterus and the fallopian tubes. From the fallopian tubes, it migrates, implants in the abdomen, and grows. Cramping and uterine contraction, not gravity, play the most significant role in menstruation flow.

Myth 2: The positions myth

Positions that raise your hips during menstruation (like specific exercises and yoga positions) increase endometriosis risk because it causes the menstrual flow to back up into the fallopian tubes.

Fact: See the above point from Myth 1.

Myth 3: The partners myth

An increased number of sexual partners increases your risk of having endometriosis.

Fact:  While we don’t yet know all the possible causes of endometriosis, we do know that heredity and environmental toxins play a role.

Myth 4: The infertility myth

Endometriosis always causes infertility.

Fact: About 50% of women with endometriosis will be infertile. The more severe a woman’s endometriosis, the greater the risk to her fertility.

Myth 5: The diagnosis myth

A definitive diagnosis of endometriosis is necessary before starting fertility treatment.

Fact: In vitro fertilization (IVF) is the standard fertility treatment and is about as equally effective with women with or without endometriosis. Waiting until a woman has a definitive diagnosis (or a surgical diagnosis) is not necessary.

Myth 6: The miscarriage myth

The inflammation and abdominal lesions caused by endometriosis increase the risk of miscarriage.

Fact: Some reports suggest a very slight increased risk of miscarriage or other pregnancy complications, but it’s not a significant link. You should talk with your doctor to assess your individual risk.

Are You At Risk for Endometriosis?

March is National Endometriosis Awareness Month. We want to equip you to talk about the challenges you may be experiencing and assess your risk factors. Since this chronic disease impacts about 6 to 10% of women of reproductive age in the US, it might comfort you to know you are not alone.

Information is power, so consider this quiz as a tool to determine if you are at increased risk of having endometriosis.

  • Did your mother or sister have endometriosis?
  • Did you start your period before age 11?
  • Is your menstrual cycle less than 27 days?
  • Are your periods heavy and last longer than 7 days?
  • Do you have severe cramps during menstruation?
  • Do you exercise less than 4 hours a week?
  • Have you never been pregnant?
  • Have you been trying to get pregnant for more than 12 months (if under 35) or 6 months (if 35+)?
  • Do you spot in between your periods?
  • Have you ever had a milky nipple discharge unrelated to breast-feeding (galactorrhea)?

Each of these questions highlights a risk factor for endometriosis. The more risk factors you’ve ticked in the list, the higher the risk you have for endometriosis. (Please note: the last two – spotting and breast discharge – could also be signs of more severe problems, which you should discuss immediately with your doctor.)

Have You Been Diagnosed with Endometriosis?

A new diagnosis, no matter how long you’ve suspected the condition, can feel scary and overwhelming. So, take a deep breath and recognize that you now have some power in your hands with this knowledge. And again, remember, you are not alone.

We’ve got a few suggestions to help you navigate your diagnosis that can improve your quality of life and empower you too.

Educate Yourself

Ask your physician for recommended resources to help you understand what is going on in your body. You can also discuss tips for reducing your symptoms and what you can do to improve your chances of fertility if that’s a concern.

We highly recommend these two Creating a Family radio show/podcasts to help you get the basics:

The Endometriosis Foundation of America will be an excellent resource for you, as well.

Make Some Changes

There are a few commonly suggested lifestyle changes that you can make. These alterations don’t need to be tackled all at once. Nor will they be a “cure-all” for your challenging symptoms. Instead, they are tools you can employ to improve your quality of life. When you figure out which ones work best to manage your symptoms, you’ll be glad you tried.

  1. Exercise regularly. It’s one of the best things you can do for endometriosis. It lessens menstrual flow, thus may prevent the progression of the disease. It also increases endorphins in your bloodstream, which can help with pain relief.
  2. Meditation or yoga can also increase endorphin levels and lessen pain.
  3. Avoid environmental toxins — specifically, those with estrogenic effects such as pesticides, herbicides, and PBA. We still don’t know the full extent of environmental estrogens. Still, there is strong evidence to suggest that they worsen this disease.
  4. Plan your family sooner than later. Talk with your physician about this, especially if you know you want children. We know life doesn’t always work out this way but keep it in mind if your circumstances permit.
  5. Seek fertility treatment sooner. It’s generally recommended that you “try on your own” to get pregnant for several months with timed intercourse. However, if you have endometriosis, do not wait a full year if you are under 35 (or 6 months if you are over 35) before consulting an infertility doctor.
  6. Find support. Join an online or in-person community of other women who live with endometriosis.

Be Kind To Yourself

The painful, heavy periods, overwhelming fatigue, and other challenging symptoms can knock you out. When your body is flaring up, be kind to yourself. Keep that heating pad handy. Lose yourself in a good book or a light-hearted movie. Say no when you need to. Tell your closest friends or family what you need to cope with your endometriosis.

Whatever you find that works for those most difficult days, permit yourself to do it. And when your flare-up subsides, you can resume your regular self-care and healthy lifestyle choices.

Originally published in 2016 & 2017; Re-written and re-published in 2021
Image Credits: Thiago; Goran Has; Nenad Stojkivic; j.a.woodhouse