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How Endo-Aware Are You?


So yes, it's still March, which means that it's still Endometriosis Awareness Month.

I realize there are probably a certain number of readers at RH Reality check who take the term “reproductive health” as shorthand for “abortion,” or possibly “abortion, contraception, sex ed, and birth options.” And not that those things aren’t important — they all are — but limiting the discussion to them presents an incomplete image of everything that “reproductive health” encompasses.

So yes, it’s still March, which means that it’s still Endometriosis Awareness Month. And talking with some of the members over at Live Journal’s endometriosis community brought to light how much the lack of information and lack of accurate information can make dealing with endo harder for some of us.

These misconceptions are harmful, since they can contribute to stigma associated with chronic pain and make it more difficult for people to seek out and receive proper treatment:

Myth: I don’t know anyone with endometriosis.

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Reality: Endometriosis occurs in approximately 5 to 10 percent of women. Which may not sound like a lot, until one considers how that plays out in real life. Five to ten percent is 1 in 10 to 1 in 20 women. So if you know at least 10 to 20 women, then it’s statistically likely you know someone with endo.

Myth: Period pain is normal; we all deal with it. People with endo are just exaggerating in order to get attention and/or drugs.

Reality: While some menstrual pain and discomfort can be normal, the kind of severe pain a lot of people with endo have is decidedly not. Also, when someone is doubled over and puking on your shoes, “Period pain is normal,” is pretty much the last thing they want to hear, with the possible exception of, “Get over it; you’re not in that much pain.”

Myth: Endometriosis is just a bad period.

Reality: It’s true that dysmenorrhea is pretty much the hallmark symptom of endo. However, people with endo may also experience symptoms like other cyclic pain, painful urination, painful bowel movements, pain with sex, excessive bleeding, or infertility. Additionally, endo has been associated with conditions such as athsma, chronic fatigue syndrome, fibromyalgia, thyroid issues, and (other) autoimmune disorders.

Myth: Endo is simple to diagnose.

Reality: The average women with endo presents with symptoms for about 10 years before achieving a diagnosis, the definitive standard for which is laparoscopic surgery. Even for women who always have access to affordable health care and who meet with providers who take seriously their concerns, this can be a long and frustrating process.

I’m going to preface this next part by saying I don’t mean to sound whiny or inordinately pessimistic. There are folks who experience a great deal of symptom management using one or more of the given options, and that is fabulous.

What is not so fabulous, however, is that it sometimes gives people the false impression that whatever worked for one person will work for everyone, or that endo management is easy. And also, since endo management is “easy,” the false impression that if someone doesn’t experience a great deal of symptom management from a given method, that person is exaggerating or just enjoying whining.

Myth: Endometriosis is easily managed with birth control pills or other hormonal therapies.

Reality: There’s no one treatment option that works best for everyone. Hormonal therapies don’t always control pain related symptoms and can come with side effects of their own. Moreover, since they may delay conception, they’re not always an effective choice for women trying to become pregnant at that time.

Myth: Endo is easily treated with surgery.

Reality: I’ll say it again: there is no one treatment option that works best for everyone. While surgery has been shown to improve fertility and reduce pain in some patients, it can come with its own side effects (like the risk of adhesions) and can miss microscopic endometrial implants. Also, about 20% of people won’t respond to surgery while another 20-30% will have their endo recur.

Myth: You don’t really need any pain medication stronger than ibuprofen to deal with endometriosis.

Reality: Excuse me while I puke on your shoes. (Sorry, that last sentence is actually directed at all my former health care providers who’ve repeated this myth to me. Yes, I have lingering resentment.) This is an offshoot of the “period pain is normal” and “people with endo are drug-seeking” misconceptions. I’m sure there are people with endo who are drug-seeking, just as I’m sure there are drug-seeking people without endo. But there are also people with chronic pain who deserve to be able to access adequate pain management.

Myth: Pregnancy cures endometriosis.

Reality: There is no cure for endo. While pregnancy can suppress symptoms, usually these symptoms will return after birth or after breastfeeding. Also, even if it were true, “It will cure your endo,” is maybe not the best reason to recommend that someone else have a baby.

Myth: Hysterectomy cures endometriosis.

Reality: It certainly does help some folks, but even if it includes removal of both ovaries, endometriosis can recur, particularly if endometrial overgrowths have grown outside the uterus, fallopian tubes, or ovaries. Though stats vary based on the extent of endometriosis and specific type of procedure, among other factors, one study put the five year recurrence rate at 40%.

And I’m sure there are people who can read this list and go, “Yes, I know,” in terms of understanding the difficulty with diagnosis, management, and everyday life.

But there are also people who’ve told me each of these listed myths as if they were fact. It’s happened to me repeatedly over a decade and a half, and I know at least a dozen other people with similar experiences. If that’s true for us, then how many other people are being discouraged from receiving correct diagnoses and effective symptom management because of people spewing bad information?