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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When I Realized I was Parenting Myself

If I had known as a kid that every bad behavior and poor decision I made would come back to haunt me in the form of my own offspring, I might’ve acted differently. (Maybe.) At least a little heads-up would’ve been nice.

Instead, I went about being a stubborn, verbally inclined, willful pain in the rear. And now — as fate would have it — my daughter is just like me. Joy!

As much as all of those qualities make me want to tear out my hair, they are undeniably phenomenal personal assets. And — as the now-adult version who shares these traits — I know it, which sort of adds to the parental frustration in a “what’s good for the world presently sucks for me” kind of way.

Stubbornness can be a beautiful thing because peer pressure and eschewing personal ethics for outside approval are non-issues. Verbal inclinations allow for vivid self-expression and aid in academic endeavors. Strong willpower is never to be underestimated in its value and is a fiery gift of endurance, resilience, and fortitude. However, sometimes these traits are a bit exhausting to harness and guide and just generally parent.

For example, toddler tantrums. A stubborn, highly verbal child with willpower like a steel-plated ox will tantrum for at least a solid half-hour without relenting. Why? Because that expression of discontent incorporates all of the child’s greatest assets. Whereas an easy-going, quiet, amenable child may only throw a fit for five maaaaybe ten minutes before getting bored. Same thing goes for potty-training, or learning to ride a bike, or doing undesirable chores, or… you name it.

However, despite all of the struggles of parenting a stubborn, highly verbal, willful child who is much like myself, there are moments that knock me backwards in awe. Moments that remind me how amazing this fearsome force of a child is. How much potential to grow and blossom and contribute and attain happiness and be truly and ethically herself the child has. And it’s all because of these innate gifts that drive me nuts. I had a such a moment recently.

I picked up my newly first grade daughter from school and asked about her day: if she made any new friends, who she played with on the playground, etc. She went on to tell me that she played with a couple of pals she’s had since kindergarten and a girl who has never been in her class before. Then my daughter said an old friend spotted her playing with this new-to-her girl and called my daughter over to talk. The old friend said that she didn’t like that new-to-her girl because the girl was bossy. Then the old friend disclosed that she didn’t want my daughter playing with the girl. That’s when my daughter did something I never expected her to do, and it both astounded and scared me.

“I want to be friends with everyone,” my daughter told the old friend. My daughter explained to the friend that the newer girl had not been bossy towards her so she had no reason not to be friends with her, but that she wanted to still be friends with the old friend too. Even when the old friend scoffed and tried to make my daughter choose and then refused to play with her, my daughter stood firm.

“I couldn’t choose, Mommy,” my daughter told me. “I want to be friends with everyone and I can’t be unfriendly to someone just because one of my friend doesn’t like them. That person didn’t do anything to me. That’s just not ok.” And that’s when I realized that I was parenting myself.

I’d never instructed my kids on how to handle this kind of scenario because I — foolishly — didn’t yet think it was necessary to do so. But she figured it out on her own.

This situation I’d painfully lived and relived countless times in my life, was only now just making an entrance into her young life. She had many more such tests of ethics ahead.

It’s such a challenging scenario to navigate because in order to be kind to one you often end up hurting another’s feelings, if not losing a friend entirely. Truly, it’d be much easier to just go with the social norm: kow-tow, prove loyalty, and forget personal ethics. But that’s not what I ever did and it seems that’s not what my daughter is doing either. Ethics above ego… it’s not a popular road.

As my daughter chattered on about her day, my mind spun on the drama and frustration that laid ahead for her. All of the friends (and “friends”) and sometimes family who’d tug at her to dismiss her ethics. I thought about how much easier it’d be to swim downstream instead of up. But I knew that easy road wasn’t within our morals. It wasn’t our path.

I recalled all of the upheaval it can cause having such an awareness of moral code, such a fervent stance against choosing sides. How some view it as a lack of loyalty. How some feel hurt if you don’t dislike the same people they do. How some draw comfort from a band of peers rallying behind them to be unkind to someone who somehow riled them. How sororities and cliques and organizational thinking and herd mentality don’t take well to this line of thought. How maintaining personal ethics can cause lost friendships and social woes, but it also enables you to look back at those same scenarios and know in your heart that you chose correctly. Even if no one else can see it.

Because someone else’s insecurity is not a reason to dash your morals. Because a true friend would never require you to abandon your ethics to simply prove fealty.

As proud as I was of my daughter, I mourned for her the easy path she’d miss. I fretted for her the heartbreak her morals would cause. I pined for the friendships she’d lose. I glowed with pride for her strength. I stood in awe of her youthful wisdom and fearlessness. I gave thanks for her fortitude.

That’s when I realized I was parenting myself. And I knew she’d be just fine.