Let's Bust These 10 Myths About Endometriosis

Endometriosis is a chronic condition that is shrouded in mystery. The presentation of endometriosis is as varied as the individuals impacted by it. And misinformation regarding diagnosis, treatment, and management of the condition are rampant. In an effort to distinguish between fact and fiction, let’s dispel the top 10 myths about endometriosis.

Myth #1: Endometriosis is easy to diagnose.

In fact, endometriosis cannot be diagnosed without undergoing exploratory laparoscopic surgery. Endometrial lesions are not visible by a standard ultrasound, not even a transvaginal ultrasound, which is typically the first diagnostic procedure recommended by a doctor. And a routine Pap smear will not detect any kind of abnormality making it even more challenging to get a doctor to refer a patient for the appropriate diagnostic laparoscopy. It’s a cruel catch 22, which is why those with endometriosis often face years of painful symptoms without being able to get a correct diagnosis.

Myth #2: Endometriosis isn’t that common.

Though statistics indicate that 1 in 10 women will be diagnosed with endometriosis, the challenge of getting a diagnosis can mean that many individuals are going undiagnosed and untreated which would indicate that the numbers are even higher. For the sake of illustration, the population of those identifying as female in the U.S. is around 166,000,000, which means 16,600,000 individuals living in the U.S. are diagnosed with endometriosis. A staggering and sobering number to be sure.

Myth #3: Periods are always painful.

Generally speaking, while many women experience cramping, bloating, and discomfort during their menstrual cycles, most can take an over-the-counter pain medication that will alleviate their symptoms enough to function without significant disruption to their daily lives. Periods that are accompanied by severe pain that doesn’t respond to pain medication and causes a complete inability to function are not, in fact, the norm and are definitely a red flag that perhaps an individual has endometriosis.

Myth #4: Everyone with endometriosis experiences pain or other forms of discomfort.

It’s true that many who have endometriosis do experience a wide range of symptoms that are more or less debilitating, including but not limited to digestive issues, nausea, diarrhea, constipation, bloating, chest pain, painful sex, and symptoms similar to a urinary tract infection. However, some individuals with endometriosis do not experience much pain at all. Furthermore, stage level and type of endometriosis also do not correlate one-to-one with the degree of pain. And lastly, individual pain threshold and comorbidities that can affect pain aren’t always factored into the equation. That’s why pain measurement should not be used as a diagnostic tool by medical professionals.

Myth #5: Endometriosis only affects female reproductive organs.

While it often affects areas within the pelvis, like the uterus, bladder, ovaries, and Fallopian tubes, endometrial tissue can form anywhere in the body, including the lungs and stomach. This accounts for some of the wide range of symptoms experienced by those affected.

Myth #6: Endometriosis causes infertility.

While endometriosis may cause infertility, many women do go on to become pregnant and give birth in spite of having an endometriosis diagnosis.

Myth #7: Pregnancy cures endometriosis.

On the flip side of the pregnancy coin, contrary to what many doctors suggest, becoming pregnant will not cure endometriosis. This particular myth angers me because my ex-doctor weaponized his religious beliefs that women should procreate upon me, veiled in a toxic stew of medical advice. Year after year, he pushed his pro-baby agenda on me by telling me my endometriosis would be miraculously cured if I got pregnant and denying me other treatments that might help me, but would render me unable to have children. That’s bad medicine and goes against the Hippocratic oath.

Myth #8: Hysterectomy cures endometriosis.

A hysterectomy may alleviate symptoms associated with endometriosis, but it isn’t a cure, nor will it help everyone. While it did help me for the most part, I still have scar tissue and lesions on my ovaries and bladder that occasionally cause me pain and discomfort. But at least I don’t have to deal with horrendous menstrual cycles, which were my primary causes of flare-ups in symptoms. Again, each patient is unique and needs to be treated as such.

Myth #9: Birth control is an effective treatment for endometriosis.

I first began having symptoms of endometriosis when I was 12 years old. After visiting numerous holistic medicine practitioners and gynecologists, I was put on birth control at the age of 16, even though I was not sexually active. I continued to have excruciating pain and other symptoms for the next 11 years. After my diagnosis in 2003 at the age of 27, my doctor switched my birth control to one that restricted my periods to four times a year. I remained on this pill until I finally got a hysterectomy at 36, during which not only did I continue to experience debilitating symptoms, my endometriosis had spread throughout my abdomen and had wrapped around my bladder, causing extreme pelvic discomfort. The moral of the story is, birth control isn’t an effective treatment method and can come with a host of potentially dangerous side effects.

Myth #10: Menopause cures endometriosis.

Even though estrogen has been linked to the proliferation of endometriosis, the reduction of estrogen that occurs during menopause isn’t necessarily enough to cure it. Symptoms may continue and new endometrial tissue can still form well after menopause.

While this is by no means an exhaustive list of myths surrounding endometriosis, it covers some of the more valid ones. I ignored those relating to what I would call “belief systems” linking endometriosis to “moral failings,” like having an abortion. Those do not merit attention or discussion, except from the perspective of the policing of and objectification of women’s bodies within certain religious belief systems. That is a serious issue in terms of receiving proper medical care, but outside of the scope of this article. If knowledge is power, hopefully, this endometriosis myth busting will have armed you with the knowledge you need to effectively navigate your diagnosis and treatment with your health care team.