Why is This Dangerous Drug Still a ‘Treatment’ for Endometriosis?

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Today, I came across the article “These Women Took A Drug To Slow Puberty — & Now They Say It Destroyed Their Health” on Refinery29. It really fired me up, so after reading it, I started writing a quick Facebook post to share along with the article. But that Facebook post quickly turned into a full on blog, so here we are.

While Lupron, the drug discussed in Refinery29’s article, has other “uses” (like those described in the piece) it’s primarily for treating cancer.

Lupron is also one of the most widely recommended drugs for “managing” endometriosis, prescribed as an “alternative” to a hysterectomy.

In my case, it was suggested in 2015, after my first laparoscopic ablation surgery failed to improve my condition. Because I wasn’t yet ready for children, my gynecologist advised that it was the only option available to me if I wanted to avoid hysterectomy. I was 26 at the time.

At 26, I was told my two treatment options were to remove my reproductive organs entirely or to place my body into a medically-induced menopause, decades before it would naturally enter that state. (Spoiler alert: I left that doctor and found one who didn’t want to excise my organs or fuck with my hormones in one of the most dramatic ways possible.)

In case the Refinery29 article doesn’t quite cover it for you, here’s why Lupron sucks: It forces your body into a pseudo-menopause. The side effects of Lupron – like osteoporosis – are so dangerous that endo patients can only take it for a total of six months throughout their entire lifetime. Like menopause, Lupron can cause everything from hot flashes and night sweats, weight gain and headaches, moodiness and sexual dysfunction. And, for many women, the effects don’t reverse once they’re off the drug.

Despite all this, doctors are still prescribing it. Worse, they’re prescribing it to girls and young women in the prime of their lives. I won’t even get into the emotional impact this drug has on women’s lives, their relationships.

Strictly from a health perspective, isn’t it glaringly obvious that the risks outweigh the reward when it comes to Lupron?

That’s what I felt, at least. And that’s why – after spending several weeks sifting through articles, patient reviews, and scientific literature – I said, “Fuck it. I’d rather live in agony than add more (new) problems to my list.”

THIS is why I started sharing my experience with endometriosis.

Because an estimated 176M women  – that’s one in 10 – suffer from this disease.

Because – in an age where we have self-driving cars and are exploring space travel – how is it possible that medically-induced menopause and invasive surgery are still the primary options suggested by most doctors?

Because how can we look away while so many of our sisters suffer?

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3 Things I Wish My Doctors Told Me About Endometriosis

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I remember the instant I found out trouble was afoot (in my reproductive organs, that is). It was July 2013. I was mid-ultrasound – one that my primary care physician had me schedule to check in on the IUD that had been placed several years before.

Without a concern in the world, I was chatting casually with the technologist when she made a strange face.

“Hmm…” she said, her eyes glued to the monitor in front of her. “The IUD is fine, but it looks like you have an ovarian cyst.”

My anxiety immediately went into overdrive. Excuse me? A what? Where? I tried to keep calm as she explained she couldn’t tell me much more. That my doctor would follow up once she had reviewed the results.

A day or two later, my doctor did indeed follow up with a cryptic call, telling me to swing by her office when I was out of work.

“Swing by,” she said, as if we were besties and wanted my opinion on the new sweater she’d bought.

Swing by I did, only to find out for sure that what the tech spotted was indeed a cyst. A complex cyst, which appeared to be an endometrioma. I remember being partially relieved. I had been experiencing extreme pain for over a year, At least now we had outlined the cause.

More so, though, I was worried. Especially because, instead of explaining the various options and years of treatment I was about to endure, my doctor instead opted to peddle the most extreme treatment – the removal of said cyst, along with the ovary it sat on – as the most likely one.

I went home that day and bawled my eyes out. I was 25 at the time. My now-husband and I were still months away from our engagement. What if I couldn’t have kids? Would he even want to propose to me now? Like this? We hadn’t planned on having children for at least five more years. Would we be able to?

What I Wish I’d Known About Endometriosis

In the years since that ultrasound and the doctor appointment that followed, I’ve been diagnosed with endometriosis and undergone a barrage of treatments and medication. As with many endo patients, pain has become my new norm. Over time, I’ve learned how to adjust my life accordingly.

Unfortunately, endometriosis and chronic illness don’t come with an instruction manual. If they did, here are a few things I’d want them to cover:

1. Listen to & obey your body

I can’t stress just how crucial it is to listen and respond to your body. It’s so much easier said than done. There have been countless times I’ve listened to and ignored the cues from my body telling me to take it easy — like the other Saturday, when I scheduled for myself a day and night full of events, only to spend the next three days feeling like I was fighting the flu.

In the end, you’re the one who pays the price when you ignore your body. Don’t guilt trip yourself for making well-being a priority.

2. Build a strong support system

The unfortunate news is, so many people just won’t get it. Friends will take your inability to attend events for unwillingness. Bosses will confuse bad days caused by chronic pain or fatigue for poor performance. Skeptics will assume you’re making it all up.

Lose the naysayers. Chronic illness is tough enough as is. Surrounding yourself with your biggest cheerleaders – friends, family, doctors – makes it easier.

3. Quit it with the comparisons

This includes but isn’t limited to: comparing yourself to friends, to family members, to co-workers, to your partner’s previous significant other, to strangers on the internet, to the lady on the treadmill next to you, to the other dog owner you met in the park last weekend.

The toughest comparison to stop making? The one to your old self.

Endometriosis and chronic illness can be such difficult pills to swallow – particularly the whole “chronic” part. Most doctors don’t really give you a heads up on how it will affect your life. No one tells you how to navigate accordingly.

My best advice? Take it one step at a time.

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I’m Sick of Staying Silent About My Endometriosis

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When I decided to publicly commit to writing on my personal blog, I danced around potential topics for days. The one I kept coming back to time and again – the one that was so OBVIOUSLY what I ought to blog about, the one my husband urged me to write on – is the one I ultimately decided I’d definitely stay away from.

I didn’t want to write about my struggles with endometriosis for a lot of reasons. For one, it’s not everyday you share details about your period and lady parts with the whole wide world. Discussing those personal topics isn’t exactly encouraged in our society. What’s more – as with any chronic illness – opening up about endometriosis also means I’m opening the door to ignorant, insensitive comments and assumptions about my health, my fertility, my relationship, and my body.

There’s so much stigma around talking about “women’s issues” like endometriosis, that many of the 176M women suffering from the disease have stayed mum. We’ve been told by both doctors and our loved ones alike that periods are supposed to hurt. That the pain is all in our heads. That we’re just being dramatic.

But biting our tongues because we’re embarrassed, ashamed, or feeling whatever it is that’s fueling this silence has done nothing to advance research on the disease. In fact, keeping quiet about endometriosis is harming everyone it affects. Few gynecologists actually understand what the disease even is, let alone how to properly treat it. That’s due to a variety of factors, including that the fact that symptoms of the disease run the gamut – everything from horribly painful and heavy periods, to painful sex and infertility, to chronic constipation, extreme exhaustion, food intolerance, and more. 

What’s more, the symptoms I experience may be very different from what the woman next to me with endometriosis experiences. Add to that the fact that, while her disease may be more advanced than mine, she may experience less pain and problems than I do.

To top it all off, endometriosis doesn’t show up on imaging like ultrasounds or MRIs, so doctors have to perform laparoscopic surgery to accurately diagnose the disease. There are few viable endometriosis treatments (not to be confused with cures) to begin with, so we’re often pushed toward the most extreme: hysterectomy.

After years of trusting my doctor’s misguided treatments based on outdated practices and staying silent about a condition that impacts every. single. aspect. of my life, I’m pissed off.

Here’s the thing: shame, embarrassment, or whatever it is that’s held my and so many other women’s voices hostage is the last thing on my mind when I’m writhing half naked on the floor in pain so severe I’m convinced there’s a cactus lodged up in my uterus.

Instead, the only thing I’m thinking about is how to make the pain stop. Followed by, “Why the fuck is no one giving this disease the attention it deserves?”

Let’s be real. If 176M men were suffering from a disease that covered their reproductive organs in painful adhesions and cysts while crippling their fertility and sapping their sex lives, the treatment options sure as hell wouldn’t include cutting their dicks off. If men were diagnosed with a disease that cost them 10 hours of productivity at work every. single. week., doctors wouldn’t suggest sterilization as the answer.

I look at it this way: if sharing my story educates even one person about endometriosis, we’re better off for it. If it helps even one woman see she’s not alone and there are doctors who can help, then I want to offer her my support.

So, here’s the Cliff’s notes version of my battle against endometriosis:

Following a decade of painful periods, things took a turn for the worse soon after I graduated college. In 2011, I remember leaving work mid-day with pain so severe it radiated through my pelvis, into my thighs, and down to my knee caps. Waking up on multiple occasions in my new boyfriend-now-husband’s bed, horrified to find myself covered in blood. Nearly passing out while using the bathroom. Cramps so paralyzing I’d double over while picking out vegetables in the grocery store.

In 2012, the constant pain in my hips and pelvis crept into my back. The endless ache that I now know is refered pain was so extreme I stopped running. I swapped my desk chair at work, sat with a lumbar pillow, and practiced Bikram yoga three times a week to try and find some comfort. I spent more than a year terrified I had bone cancer, while each MRI and X-ray came back negative. My doctor spent months prescribing me a cocktail of birth control, sometimes doubling up the doses.

In 2013, an ultrasound revealed I had ovarian cysts. I was 25 – not yet even engaged! – when a doctor first suggested I may lose an ovary. Sleeping became near impossible. The combination of blood loss and pain during a period made my exhaustion severe and nearly all activities – work, social, or otherwise – impossible.

Enter 2014. The pain increased and my health declined. I started having trouble with memory, difficulty writing, and a hard time articulating my thoughts. In December of that year, just six weeks before my wedding, I underwent laparoscopic surgery. My endometriosis was officially confirmed – it covered my reproductive organs, my bowels, my bladder. My adhesions were burned off. The cysts were drained.

My condition improved for three months, but by April 2015, the symptoms returned. I was incessantly urged to have kids as soon as possible, with a hysterectomy immediately following. I was 26.

I wish I could tell you things are resolved now, that my health is better, and that I’m feeling fantastic. But that’s not the case. Like many women, my endo story’s ongoing, and my status changes day by day.

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Why running is a lot like writing

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I wasn’t athletic as a kid. Primarily because I broke my tibia when I was seven. Snapped the thing clean in half, wore a cast from the tip of my toes to the top of my thigh, and spent nearly all of second grade in a wheelchair or on crutches.

Healing took forever and left me with a big old bump on the back of my foot. It was conveniently located close to my growth plate, so I had to wait until I was in high school to get my achilles tendon surgically detached, have two inches of bone broken off, and get the tendon bolted back on. (Commence another three months on crutches.)

Needless to say, it made playing sports impossible – or at least very unlikely. It wasn’t all doom and gloom, though, because while other kids were learning soccer, I was learning my love for writing. I’d spend hours writing my “chapter books” – stories of elaborate adventures with my friends where we always wound up saving the neighborhood from destruction.

Given my injury, no one really expected that I’d ever be athletic or even all that active. And for the most part, I wasn’t. At least not until college, when one day I woke up and decided I was going to start running. At first, I began for a logical reason: I had been losing weight and I could burn more calories in less time running than I could on the elliptical.

Soon enough, I discovered that running not only accelerated my weight loss – but I actually enjoyed it. That said, I wasn’t particularly good. I was slow. My pacing was terrible. I considered one mile a pretty decent distance.

But I really liked running and I wanted to get better. The best way to do that? Keep running.

So I did. And along the way, I realized it has a lot of parallels to writing.

  • Like running, the only way to get better at writing is to write. A lot. Sure, you can read some books on how to pen excellent prose or create really fantastic content. And you can talk to other writers about their tried and true tactics. But at the end of the day, the only way to improve your craft is to keep practicing.
  • And just like running, there are days where writing is the absolute last thing you’ll want to do. There are times where writing feels like the hardest task ever and you really struggle to get through whatever it is you’re working on. But – like running – you keep with it. You push through the hard parts because you’ve got your eye on that finish line. (Or that final draft.)
  • You never regret the time you spend writing. Even if what you’re writing feels kind of a lot like garbage when it’s done, you never say, “Wow, I really wish I didn’t sit down and write today.” Kind of like how you never regret a run – even those miserable ones where you end up walking half the route.
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3 (mediocre) tips to overcome writer’s block

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Back in February, I committed to making my blog a priority. I publicly announced that I’d set the bar low – just two posts a month! But, being the overachiever I am, I mentally told myself this really meant every Thursday. Things were going well. I posted four weeks in a row (hurrah!).

Then, THE WORST THING EVER happened. I got writer’s block. And, being that I write professionally and for my own personal entertainment, it was bad.

Writer’s block is an insufferable ailment. Symptoms include staring at your screen, writing paragraphs, deleting said paragraphs. More writing, more deleting. Metaphorically pulling teeth while struggling to string two words together into a coherent sentence.

But let’s be clear here. Writer’s block isn’t the same as procrastination. Procrastination is when you can’t get yourself to sit down and open the damn laptop in the first place. Writer’s block is when you know what you’re going to write about, but – despite your best attempts – can’t get the words out of your brain and onto the paper (er, Google Doc).

Thing is, writer’s block is kind of par for the course. I don’t care how adept or experienced you are. If you’re a writer, there will inevitably come a day/week/month (God help us) where writing is the last thing your brain wants to do.

When that happens, you’d better have a couple cards hanging out in your back pocket to pull when things get desperate. Here are mine (fair warning: they’re not ground breaking).

1. Apply pressure

I think it’s safe to say that most writers work best under pressure. It comes with the same territory that brings us over-caffeinated editors breathing down our necks because it’s now 3:30 p.m. and you were due to post copy at 3 and where the hell’s the article!?

That’s why deadlines are key. Deadlines help keep you accountable. They help drive creativity, too – at least in my case. When I know I’ve got an hour to finish a piece, the adrenaline kicks in, flips the creativity switch on, and the good ideas start flowing.

But if, like me, you’re the over-caffeinated editor setting the deadlines in this scenario, then suddenly that 3 p.m. cut-off looks a little more like 3:30 p.m., which looks a lot more like after dinner/in the morning/next week. Long story short, give yourself too much leeway and you’ll never get anything accomplished.

To counteract this, I give myself mental deadlines. Usually, that means blocking off a chunk of time in my calendar to write. It’s often in between other meetings, so that when time’s up, it’s really up. If all else fails, I pull in a third-party and tell them I’m sending a draft by X o’clock. Their day may not hinge on reviewing my draft, but it’s enough motivation for me to make sure I send copy by the time I said I would.

2. Take a hike

Just kidding. I don’t hike (sorry, Dad). What I really mean is get out of your own head.

Let’s say I’m slogging through a piece. It’s really tough, I’m not happy with any of it, and I’m ready to throw in the towel. When this happens, I get up and do something else: take the dog on a walk, put a load of laundry in, go chat with a coworker. That’s not a novel idea, I know.

But when I get up and walk away from my work, I make sure I’ve got a notebook or my phone with me. That way, when the brilliant idea finally DOES come around, I can jot it down.

Usually, the ideas I’m desperately wracking my brain for come at really inopportune times: as I’m driving down the Mass Pike, for example. When that inevitably happens, I use my phone’s voice commands to send myself an email with whatever genius headline pops into my head.

3. Cut yourself some slack (& I don’t mean lower your standards)

OK, this one isn’t specifically about writer’s block. But sometimes I’m what’s holding me back from just calling a piece done – and I suspect that’s true for a lot of people.

I briefly worked with one woman who was so painstaking in her work that nothing. ever. got. done. This person was literally PARALYZED by her quest for perfection. Job roles stayed open for ages. Website relaunches went overdue by weeks.

Even blog posts stayed in eternal draft form because nothing was ever good enough for this lady’s impossibly high standards/insecurities. It eventually got so bad that she was let go. That’s when I set the 90 percent rule for myself.

If something I’m working on is 90 percent there, it’s good enough – and good enough isn’t bad.

Chances are, if you’re still trying to improve beyond the 90 percent mark, you’re just nitpicking at things no one else will notice or care about anyway. There’s always room for edits and improvement – there just isn’t always time for them, and that’s OK.

Like the infamous sign at Facebook says, “Done is better than perfect.”

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Getting your readers to actually read

Step 2 to becoming a kick-ass writer

(Read Step 1 here)

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This week, my dad sent me a TED talk by linguist John McWhorter. While the gist of the talk is about texting’s impact on language, a few minutes of it are dedicated to the evolution of speech and writing.

At about 03:11, McWhorter explains how decades ago, it was natural to speak like you wrote. (Cue the Gettysburg Address.) He argues that, while people likely wanted to write like they spoke, the execution was a lot harder back then.

Try capturing a conversation word for word with only a quill and parchment. Or an old school typewriter that you have to manually feed paper into. Not very easy. But, according to the TED talk, the problem went beyond that.

“Even if you can type easily enough to keep up with the pace of speech… you have to have somebody who can receive your message quickly,” says McWhorter.

McWhorter’s talking about phones here, of course, but his statement got my wheels turning.

The Web’s Influence on Writing

The Web has seriously evolved the way we write. Not just because it’s a medium all its own, and not just because Web-based content serves an entirely different purpose than other formats (though both are certainly part of it).

The Web has evolved writing is because it’s also evolved our attention spans. In fact, the average person’s attention span is now LESS THAN A GOLDFISH (oh how I wish I was kidding), at about eight seconds, according to one study.

Thanks to the endless barrage of information coming at us from all directions, people today need to receive messages quickly. Long, dull, drawn out content gets in the way. Flowery language makes things hard to understand. Big blocks of text tell your brain, “Hey! This is going to take you a long time to read!”

So how can you actually get your readers to read?

Chop it up

If I’ve got under a tenth of a minute to get your attention, then the style, structure, and approach of my copy better be on point.

Hence the visual-heavy, subhead-laden, written-like-you’d-say-it, list-style articles many publications write.

They’re not writing that way because it’s trendy or because people aren’t smart enough to read an in-depth analysis (OK, that’s debatable). They’re doing it because when your brain sees an article that’s visually broken up by images, bold words, and concise paragraphs, it says, “Wow! This looks nice. It’s formatted so that it’s easy to read. Let’s go!” `

Here are a few ways to break up your copy:

  • Keep your paragraphs short. And I mean short. Even four or five sentences is pushing it.
  • Call out what’s important. Bold it. Underline it. Increase the font size. Whatever it takes to help your readers get the point.
  • Make it scannable. Break it up. Add subheads. Include images. Call out important quotes. Include bullets. Organize points in a list.

Strip it down

Whether it’s a blog, email, or another kind of content, one of my biggest pet peeves is when people take too long to get to the point. Convey your message in as few words as possible.

Most of the time, it’s easier said than done – especially when what you’ve got to explain is complex. Because let’s face it, it’s easier to articulate something when you’re not limited to a word count.

But think of your writing like you’d think of an elevator pitch. If it takes you any longer than 30 seconds to explain what your business does, you’ve lost me. In the same vein, if it takes you 13 paragraphs and a postscript to explain why you want to meet on Monday, I’m deleting your email.

Next time you’ve finished writing, take a second to go back through your copy. Strip down every sentence. Carefully vet every word and consider:

  • Can you eliminate any unnecessary words?
  • Are you padding your sentences with fluffy language?
  • Is it possible to make the same point in less words?

If you answered yes to any of these, put your editor’s hat on and get to work.

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How to become a kick-ass writer

Step 1: Find your voice

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Voice. It’s usually one of the hardest concepts for new writers or “non-writers” (those people who tell you, “I’m not a writer” but actually they are because they still send emails/update their Facebook status/write notes in birthday cards) to wrap their heads around.

I think it’s because you spend so many years writing five-paragraph essays and academic research reports, graded by teachers and professors who X-out any inkling of voice or creativity. Unless you’re blessed with a lucky teacher or two who helps cultivate you as a writer (thank you, Mrs. Couture/Jen Augur!), you spend 18ish years stripping any and all voice right out of your writing.

But if you ask me (and let’s assume you did because – here you are – reading my blog), a strong voice is what sets great writers and great copy apart. Establish your own tone, really nail your personal writing style, and you immediately separate yourself from 90 percent of the garbage out there.

So, OK great. Voice is a must. But how do you actually figure yours out?

Throw conventions out the window.

No really, I’m serious. All that five paragraph essay nonsense you learned about in eighth grade? Forget it. (Most of it. Remember a little bit of it, because a teensy shred of it was actually kind of relevant.)

There are rules in writing – sure. But most of them are made to be broken. Nine times out of 10, no one’s going to be there to slash red pen through each line of the email you wrote. Contractions are OK. A run-on sentence isn’t going to kill anyone – especially if it’s written in a way that sounds authentic. So long as you’re not throwing commas all over the damn place or writing typo-laden notes, no one’s going to come chasing after you. 

If the rules of the writing road really do matter to you, then take the time to learn and master them. But don’t let your fear of them hold you back from picking up your pen in the first place.

Do some character work.

I used to work at an agency where I helped clients develop and execute their content marketing strategies. One of my favorite things about that job was helping new customers identify their brand style and voice.

“If your brand was a person, who would it be?” I’d ask. “How would she describe herself? What qualities would he have? What would your brand read on the weekends?”

(I know. You’re like, “Umm, my brand wouldn’t read anything on the weekends because it’s a brand and doesn’t have eyes. Or a brain. Or opposable thumbs to flip/scroll through the page.”)

One of my favorite answers was from a company that was trying to reinvent itself to engage Millennials (we’re so popular, guys!). They had clearly thought deeply about the question, because they said, “We’re business savvy. We’re experts in our industry, probably the smartest guy in the room, and we’ll tell you everything we know in a way that makes you feel smart, too. But, while everyone else is wearing suits and ties, we’re in shorts and flip flops.” That answer blew my hair back. I remember thinking, “YES!! These people get. it.”

You’re not a brand, obviously. But you can still identify the qualities you want to convey. Start by thinking about some key attributes you want associated with your writing. Do you want it to sound academic or should it feel like we’re catching up over your kitchen table? Are you buttoned up or is your style more laid-back?

Figure that out and then get ready to…

Take the training wheels off.

When I was in college and first starting this blog’s predecessor (my weekly column of the same name), I seriously struggled. I had this newfound freedom to write about whatever I wanted! In whatever style I wanted! But I was totally lost on how to do it. I kept trying to apply a journalistic/academic voice to my writing – mainly because I didn’t know any other style to write in – and it just. didn’t. work.

The more I kept trying to contain my copy to that style, the more I hated that damn column. Until one week, when I wrote on a topic that had me really heated. I was so up in arms over it that I sat down at my laptop and, for about 30 minutes, typed exactly what was in my head on that subject. Off came the training wheels and my voice – my raw, unfiltered, really real voice – came busting out.

That was the first week where my column actually resonated with people. I know because kids came up to talk with me about it. Later on, my friend and co-editor at that paper helped me identify what made the column work.

“It reads like how you sound. It’s like we’re sitting across from each other having a cup of coffee,” she said.

The simplicity of that concept blew my hair back. I remember thinking, “YES!! Now I finally get. it.”

Whatever your voice is, this is what it really boils down to: Good writing isn’t boring. Good writing has personality and it exudes the kind of something different that makes you feel things and makes you think and – above all else – makes you want to keep reading.

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