5 Taboo Symptoms of Endometriosis No One Talks About

Periods. No one talks about them, aside from kitschy tampon commercials featuring frolicking 20-somethings in white denim. Needless to say, if standard periods aren’t discussed, an ailment associated with monsoon-like menstruation is straight-up taboo. But Endometriosis (a condition that causes uterine tissue to grow outside of and beyond the uterus) is more than just vice-like cramps. More than just heavy bleeding. More than just irregular cycles and possible infertility. And I’m here to talk about it. Really talk about it in true raw, real, shameless form. So get ready. (WARNING: If you’re the skittish or woozy type, stop reading now.)

Endometriosis is an incurable, little-discussed yet life-changing medical condition shrouded in secrecy, entrenched in stigma, and plagued by inhumane, archaic, inaccurate — if not entirely harmful — medical “treatments.” Endometriosis’ reach spreads beyond the uterus and ovaries; it can affect the eyes, brain, heart, digestive tract, and more. The symptoms are so wide-ranging that many sufferers don’t connect their varying maladies to Endometriosis, because why would one think bouts of fainting, or extended postpartum bleeding, or inexplicable tachycardia could be tied to Endometriosis?

So how does my Endometriosis affect me? Like many sufferers, my cycles are irregular — though they are far more regular now that I’ve grown and birthed three children — and my flows are unbelievably heavy. No, seriously. I am in no way exaggerating when I say that by my fourth waking hour on my period I will have bled more than the average woman expels in three full days of menstruation. No wonder I am an exhausted shell of a human when I’m menstruating!

So what are some of my other odd symptoms?

1) Limited mobility: Ovulation is the worst. The pain can range from the distinct sensation of an irritating pebble in the lower abdomen, to the discomfort of a weighted golf ball embedded somewhere in the vicinity of my uterus, to a lead watermelon trying to press itself out of my body by way of my nether regions. During bad cycles, things are bad. As in every single step hurts, bad. Laughing hurts, bad. Sneezing hurts, bad. Sitting hurts, bad. Then, other months, it’s not so bad and I can manage with a mild limp or a couple of Advil and an epsom salt bath. Which is both good (because life — especially mom life — is not conducive to unexpected bouts of bedrest) and simutaneously challenging (because the inability to plan for the easy, not-so-bad, bad, or horrendous months is difficult.) Not only is any pain sudden in its onset (and, remember, my cycle is irregular so there’s no counting days to aid me in my planning), but it MUST be kept from public knowledge. Because we’re not yet at a point in social evolution when using red dye in a sanitary pad commercial is palatable, so the statement: “I’m sorry I can’t make it to our parent-teacher, conference; Endometriosis presently has a bowling ball trying to evict itself out through my perineum” isn’t socially acceptable. In fact, explaining or even addressing my Endometriosis pain at all isn’t socially acceptable, because “lady parts” are taboo and we must suffer in silence. We are to be ashamed of our affliction.

2) Sudden fatigue: Hormones are a B, and when hormones fluctuate drastically or menstruation is a deluge, energy levels plummet. Fast. It’s as if someone hacked into my body and drained my battery. One minute I’m at 90% and the next I’m at 10% battery life, and no coffee, nap, supplement, sunshine, or yoga is replenishing the drain. I’m a human zombie. It may last an afternoon or days. Who knows? But I’m a mom. I keep going, because that’s what I do.

3) Sexual dysfunction: Endometriosis isn’t just a literal and figurative pain in the butt (as the free-range, weed-like endometrial tissue often causes perineal and rectal pain in sufferers), it’s a pain in the vagina too. I am like many Endometriosis sufferers in that for at least one week per month, sex is unavoidably painful. Lube, foreplay, relaxation… nothing’s combating the painful internal inflammation. Widely, ovulation is the absolute worst time — in many ways — but other random days or weeks can be slotted for dysfunction too. Sometimes I can tell when things just aren’t going to work and sometimes I can’t. The unpredictable and personal nature of this symptom makes it the worst of all, in my book. It screws with your emotions, mind, self-esteem, and closest interpersonal relationships. But, again, it must NOT be discussed. Ever. If your significant other isn’t understanding of your excruciating physical and lingering emotional pain from this symptom, it could end a marriage if not throw the sufferer into a deep depression.

4) Digestive issues: Endometrial tissue easily spreads to the digestive tract. After all, it’s just a quick jaunt from an ovary to an intestine. So digestive woes, dietary restrictions, food sensitivities, and chronic bloating are common among sufferers. Many are put on special diets to reduce inflammation or ward off symptoms. For some, everything from the brain to the gallbladder to the heart to the rectum can be affected by the rogue tissue overgrowth. Just this year my Ob/Gyn had a patient with Endometriosis on her eye and brain. That said, if you can grow uterine tissue on your brain, you can grow it on your stomach. Though belly woes are almost expected with Endometriosis, few connect the symptomatic dots.

5) Blurred vision: The adrenal gland is taxed with Endometriosis so hormones are raging. And anyone who has been pregnant knows that wild hormones can mean more than just mood swings, but vision changes. With Endometriosis, no cycle is identical which means certain cycles can be worse or easier than others. Some months may present just some mild cramping but others may rack up a host of horrendous life-halting symptoms, blurred vision being one possible experience. Unexpectedly blurred vision can be bothersome if not worrisome, but when Endometriosis is to blame it becomes a hush-hush scenario.

My symptoms and my experience with Endometriosis are not universal. If you too have Endometriosis, reach out. Talk about it. Don’t let society win. You should be no more ashamed of your Endometriosis than a diabetic or an ulcer sufferer are ashamed of their ailments. There may not be a cure. There may not even be universally effective or accessible treatments, but there are ways to make life better. Reaching out, speaking out, and rejecting shame is one way to improve your life.

You didn’t choose Endometriosis, but you can choose to have hope. You’re not alone.

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2 thoughts on “5 Taboo Symptoms of Endometriosis No One Talks About

  1. I have so many emotions reading this. The first and most prominent is gratitude that you are sharing and opening up! I have never been one to be shushed, and I try to share to those in my circle, but thank you for putting it ALL out there to educate the world. I continue to pray, search, and be open to new ways to “manage” my Endometriosis so that quality of life can improve!

    Like

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