myths — Endo + Chronic Illness

I am SO TIRED OF ACTUAL MEDICAL PROFESSIONALS telling me to just get pregnant. So, in honor of the fact that Endometriosis Awareness Month just wrapped up, I’m out here busting these myths. It’s time for another lesson in Endo 101.

Misconceptions (and flat-out lies) are particularly insidious when it comes to endometriosis. Why? So little is really known about endo that it creates fertile ground for ::ahem:: fake news, and while most are well-meaning, many doctors and other healthcare practitioners are the ones spreading these myths. To their patients. Who are desperate for answers and plans. And who may very well make choices about their health that are irreversible and uninformed through no fault of their own.

So allow me to drop some endo knowledge on ya.

(And no, I’m not a doctor, but accuracy is more important to me than pharmaceutical company kickbacks, and if you want to check my work, feel free to cross-reference this credible source, this credible source, and that credible source.)

Fact: To date, there is no cure. So, what does this mean? I’ll tell you what it means:

Fiction: Hysterectomy is a cure. That doesn’t even make sense. Endo tissue grows outside the uterus, so why would you remove the uterus and not the disease itself and expect success? Yes, yes, I know Lena Dunham did it, but it’s unclear why (and she did need another surgery again afterward). She may have had adenomyosis, a similar disease to endo, in which endometriosis tissue grows within the uterine muscle. Hysterectomy is a cure for adeno, but not endo, and some women who have hysterectomies continue to experience endometriosis symptoms afterward, most likely because all of the offending tissue was not removed. Imagine if you had hoped to have kids one day but thought you had no other alternative to relieving your suffering…only to continue suffering afterward?

Fiction: Pregnancy is a cure. Also fun fact, endo makes pregnancy more difficult to achieve. And you might want kids but might not be ready. Or might not feel like you are healthy enough to be a present parent. Or might not want to be a single parent but might not have a partner yet. OR you might not want kids at all because sorry, but the solution to one problem cannot be a lifetime of other problems. OH AND SCIENCE. Pregnancy might help some women, but it is not a cure.

Fiction: Birth control is a cure. Birth control might adequately treat the symptoms of endo. For a few short years, it made my period a cake walk. Of course, it also masked all the problems going on inside of me, and when I could no longer take birth control (because LOL it almost killed me), my endometriosis symptoms returned with a vengeance.

Fiction: Yoga/meditation/certain foods/whatever the hell else your sister/mom/cousin/friend did is a cure. These things might very well help manage symptoms (and I am all for them), but they are not cures. If not eating sugar or dairy removed all the endometriosis tissue in the abdomen, no one would have endo.

Fiction: Lupron and Orilissa are cures. The doctor who put me on Lupron told me it would “burn out the endo left over” after my first shitty surgery. This should have been a red flag to me because DUH, if it did that, no one would have endo, but I was too sick and desperate to question it. I also didn’t question if there were side effects besides those of menopause because that’s what Lupron and Orilissa do. They shut down your reproductive system by manipulating your pituitary gland hormones, giving you a break from endo symptoms. But that’s all they do. They give you a BREAK. Because you can’t be on them long-term due to the serious damage they can do to your body. A break at what cost? Speaking of cures…

Fact: Excision surgery offers an endometriosis patient the best chance of relief. It’s ALSO not a cure, but to date, evidence shows that excision surgery (in which the endo tissue is cut away) with a highly trained surgeon results in the longest period of relief, often three to five years or more (depending on the state of the disease and the skill of the surgeon). By contrast, ablation surgery (in which the endo tissue is burned away) most often provides relief for a year or two before another surgery is needed. For me, I experienced no relief at all and in fact felt worse. This is because ablation surgery essentially only removes the tip of the endo iceberg and additionally creates scar tissue. Your insurance company might view excision and ablation surgeries as the same, but they are vastly different and have vastly different results.

Fiction: Any gynecologist can treat endo. Most gynecologists are trained enough to perform ablation surgeries, but as discussed, this is most often not enough (or even a great idea). Surgeons who perform excision surgery undergo extensive training in order to perform excision surgery, which is much more difficult. That said, excision surgeons themselves vary in degrees of training and skill, and that factors into the success of the surgery as well.

Fiction: The stage of your endo indicates its severity. Some doctors stage a patient’s endometriosis similarly to how cancer is staged. The higher the number, the farther the cancer (or endo) has spread beyond its origination site. So…

Fact: Staging might indicate how widespread the endo is, but location of endometriosis lesions does not correlate with how much pain a patient experiences. So actually this staging system is rampant bullshit because if a patient “only” has stage I endo, she might feel like she is unreasonably complaining about her pain, when someone with stage IV endo “probably has it so much worse.” In reality, someone with stage IV endo might go her whole life with no idea she even has it because endo is a twatty mystery. Where it grows, how your body processes pain, and a whole host of other factors makes the endo experience different for everyone. This is why treatment that works for one might not work for another, why one endo patient may get pregnant while another one struggles to, and why what feels to me like a knife in the ovary might feel to another like her leg is being sawed off.

Fiction: Endometriosis occurs when the uterine lining grows outside of the uterus.

Fact: Endometriosis occurs when tissue like the uterine lining grows outside of the uterus. I know, these two sentences paired together might require you to look twice, like one of those old comic strip puzzles where you look at two drawings side by side and they look exactly the same and you have to spot the differences. But this IS a difference and one that many doctors and so-called endo resources gloss over. But it’s just not accurate, and the more accurate we are about this disease, the better off we’ll be. Endometriosis tissue is not the endometrium.

Fiction: Endometriosis is a period disease caused by retrograde menstruation. I am not going to get too far into what retrograde menstruation is because this theory of endo has since been debunked, but it is basically like acid reflux but with your period (the idea is that blood flows backward from whence it came). This was a running theory about the cause of endo for a while, until researchers realized that a fuck ton of women experience retrograde menstruation who don’t also experience endo. In fact…

Fact: Endometriosis has been found in fetuses. Researchers have found endometriosis in fetuses. So while puberty and periods may be the “trigger” for the disease symptoms, it is clearly not a factor in the underlying cause of it.

Fiction: Endo is just painful periods. LOL if only. Not only is the endometriosis tissue itself not just limited to the pelvis, the symptoms and complications extend so far beyond the realm of shitty periods, it isn’t even funny.

Fact: Endo is a whole-body disease. It’s pain in between periods. It’s bleeding nonstop. It’s leg pain, back pain, chest pain in some cases. It’s chronic fatigue. The FATIGUE! It’s anxiety and depression. It’s hormonal mood swings and acne. It’s diarrhea sometimes, and it’s constipation others. It’s pain when peeing and it’s painful sex. And it’s a mindfuck because — I cannot say it enough — it’s a different cocktail of symptoms and problems for each and every one of us.

Fiction: Endometriosis is rare. Just because you haven’t heard of it, doesn’t mean it’s rare. In fact…

Fact: One in 10 women has endometriosis. If we all made up a country, it would be the eighth biggest country in the world. That’s a lot of people, people!

And we need our healthcare system to do better.

xo,
Staci