Spoiler Alert: There's No Max on Medical Bullshit

Well, well, well. It’s been almost a year since I’ve written here, and I have no excuses beyond the fact that time is meaningless during this interminable pandemic. In fact, the time stamp here in Squarespace tells me I started this post on October 11, 2020.

What can I say? Things have been busy, but also…not.

Scott and I have yet to have our wedding, but we somewhat unexpectedly bought a house because we were among the fortunate ones who were able to save extra during said pandemic and take advantage of the low interest rates.

I didn’t write in this blog, but I did technically write a book-shaped thing about all my glorious medical traumas and am working on selling it. I’ve even let some people read it. (HEY ARE YOU A BOOK AGENT? REPRESENT ME!)

And while I had made great strides in 2020 in managing my endometriosis holistically, I also suffered a significant setback that fully changed the course of my healthcare management and planning.

October was the last time I published a full post on here, and it will also be the anniversary of my being diagnosed with my second deep vein thrombosis (DVT), a.k.a. a blood clot in my leg.

TL;DR, when I was 23, I had my first blood clot. I had none of the normal risk factors at the time — I was a never-smoker at a healthy body weight who had not been on a long flight. For all I knew back then, I was “healthy.” I had not yet been diagnosed with endo or Hashimoto’s thyroiditis or thyroid cancer. But I was on the birth control pill Yaz, so my doctors surmised that was it.

ACTUALLY, my GYN muttered under her breath that she didn’t think that was it, but everyone else agreed that was it, including the makers of Yaz who paid out millions in a class action lawsuit to people like me who suffered bodily injury as a result of taking this drug.

So I was told to ditch the hormones forever, take anticoagulants (commonly called blood thinners) for 6 months, and go along my merry way.

When I had my first surgery for endometriosis several years later, my symptoms didn’t recede, and my stumped GYN sent me to a hematologist “just to see” if I could go back on birth control pills. The hematologist would be able to run comprehensive blood work and tell us definitively if it was the Yaz or not.

“What is wrong with this picture?” you might be asking, feeling like something is off in this story but not quite sure what. Here is what:

1. Hematologists do not treat endometriosis.

2. Birth control does not treat endometriosis.

3. THAT’S RIGHT, NO ONE EVER DID A BLOOD WORKUP THE FIRST TIME I HAD A BLOOD CLOT.

After telling me I should *just* get pregnant to help “cure” my endometriosis, my hematologist ran what was apparently every test on my blood that could be run based on the number of vials the phlebotomist took (a lucky 13). The results showed a couple “slight” mutations in my blood proteins — nothing to be alarmed about, none of the known major predispositions to abnormal clotting — except when combined with crazy hormone imbalances. That didn’t mean much for me in my day to day; all it meant was that I could not indeed take hormonal birth control pills, and if and when I became pregnant, I’d need special monitoring and medications to prevent another DVT. I also had to take baby aspirin once a day.

My first DVT was traumatic, and for a long time I lived in fear of another. I whined about having to take heparin shots after my subsequent surgeries to prevent clots while I was immobile and recovering, and I DEFINITELY bitched about having to wear medical-grade compression stockings to fly long distances, but ultimately these were small prices to pay to not have to deal with a random ball of blood cells that could travel to my lungs any minute and potentially kill me. And eventually I stopped thinking much about it because it was a singular thing that happened in the past, not a chronic condition I was working overtime to manage. Plus, I had the prophylactic baby aspirin, I was more physically active than ever before, and I wasn’t on any hormonal medications.

Then last October, I woke up on a Friday morning and my right calf felt sore, the same leg that had the DVT so many years earlier. I brushed it off at first. I had gone for a great run the night before, and even though it felt good, I thought maybe I had tweaked a muscle without realizing it. As the day went on, it nagged at me more and more. I complained to Scott.

“I’m sure you’ve already thought about this,” he said, “but it couldn’t be another blood clot, right?”

“No,” I said, scoffing. I recited my reasons to believe that was unlikely. “I’m not on hormones, and I’m taking baby aspirin. Plus I ran last night, so my blood flow should be good”

Then I went into the bathroom to get a better look under the brighter light. There, on the inside of my lower leg, not far from the twisted, scarred veins damaged from my previous clot, was a faint, pink bump. It hurt to touch. I freaked out. Like REALLY freaked out. I could not go through this again, I sobbed to Scott, reliving the trauma of my first clot — wondering if I’d accidentally kill myself just by rolling over onto my leg the wrong way, bracing for burning shots of heparin to the belly, getting my blood tested every few weeks to make sure it wasn’t clotting too fast but also wasn’t clotting too slow.

I’ve hit my fucking quota, I wanted to scream. When I had filled out my health history for my thyroid surgery a few years before, I had more significant conditions, surgeries, and problems than my septuagenarian dad.

Of course there is no quota, no karmic rationing of health problems. So Saturday morning, I called my primary care doctor’s office first thing. She wasn’t there of course, so I called prepared. There was a radiology center nearby that was open until noon. I told the answering service woman I had a history of blood clots and I needed my doctor to give me a referral so I could go get an ultrasound on my leg done right away.

This was my preference; another thing I had told Scott the night before that I COULD NOT do was go to a hospital. When you have multiple chronic illnesses during a pandemic, including an autoimmune one, you want to stay away from emergency rooms. The person at the other end of the line put me on hold.

“She wants you to go to the ER,” she said, when she came back. “That way if you have a clot, they can treat you right away.”

I teared up in resignation, texted Scott who was at work with limited cell service, called my parents and told them not to come because I didn’t want them near the hospital either, and drove myself to Johns Hopkins.

If you’ve had the misfortune of having to sit in the emergency room waiting area of a major urban medical center, then you know it’s basically the worst. It’s like the having to go to the DMV but the wait is even longer, you’re usually crippled with physical pain and/or major anxiety, and there are often unpleasant sights and smells.

However, COVID weirdly improved the waiting room experience. For starters, I had an admission assessment literally right away. A nurse took my vital signs and asked what was going on, as well as the general COVID screener we’ve all come to know and hate. Then I only waited about 15 minutes in a long hallway with industrial-grade fans to improve the ventilation, my chair well over 6 ft away from the next patient before I was admitted to a room in the ER proper.

Next I spoke to a number of healthcare professionals in varying amounts of personal protective equipment. The resident had on what I can only describe as an astronaut helmet with a tube running down his back. The medical student had a face shield and a mask. The nurse had a mask and full-body gown. They listened to me tell them about my history and my symptoms and told me they’d order an ultrasound and a rapid COVID test; I didn’t have any COVID symptoms, but since clots are a known side effect of COVID, I guess they figured they’d be on the safe side.

And that’s when COVID absolutely worked against me. My “rapid” test turned into a 10-hour wait. I found out later that the resident did not tell the lab that it should be done stat. And they wouldn’t do the ultrasound until the COVID results came back.

Hard pass on 10 hours of this.

As the day wore on, my arm ached from the IV, my skin became irritated by the electrodes monitoring my heart rate, the bottom half of my face became greasy under my mask, my phone battery dwindled, and I finished my book…and a tampon that I forgot to bring a replacement for. I didn’t eat, and I couldn’t sleep. By the time Scott got off work and saw my text, he was bringing me a late sushi dinner (thankfully Hopkins began allowing one visitor per patient as COVID rates dropped) and I still had not been tested for the thing I was admitted into the ER for.

Finally, after the angel-saint nurses bullied the lab into finally running my COVID test, my results came back negative, and they wheeled me up to the imaging department for an ultrasound. The transducer was cold and painful as the tech passed it over the painful bump on my leg, which turned out to indeed be a clot — a superficial one (not dangerous, though more painful) — but underneath it in the deeper veins was another thrombosis.

When the medical student, whose shift began hours after I was admitted, gave me my diagnosis, I cried. This was the opposite of the news I wanted to hear! In fact, until I saw my vascular surgeon afterward, I questioned if the radiologist was even right. Could it be that the pain was caused by the superficial clot and that what they saw in the deep vein was only scar tissue from 12 years ago?

The answer was no. I had another clot. And it would throw me for a loop.

Now here’s the part where I break the fourth wall of blogging (I just made that up) and tell you that this post is getting too long (if you’re still reading, I’m sure you agree), so I’ve just decided to make this a multi-parter! Stay tuned for the next installment where I tell you how having a DVT in 2008 is different than having one in 2020! I’ll also tell you how multiple blood clots really fuck up caring for endometriosis!

WOW, that doesn’t sound gripping at all, but trust.

xo,
S

If You Can't Handle Me At My Luteal...

I’ve been tossing around the idea to write a post about the role endometriosis plays in my romantic relationship for months now. I took so long to write it for a few reasons:

1. Having been a single lady for the majority of my life, I’m sensitive to the fact that it isn’t always fun to read about other people’s happy relationships.

2. I’m not a relationship expert.

3. You know…it’s personal. Like sure, so is writing about how you’re bad at using a menstrual cup, but it’s a different dimension and involves another person.

But the more conversations I have with my fellow endo warriors and my friends in the Baltimore Flow, the more keenly aware I become of how many people need to hear my little soapbox rant about dating and endo. So consider the above to be both a trigger warning and a disclaimer before proceeding.

In my mid-20s, I dated a pretty decent guy for three years. Like many girls that age, I asked very little of him. The idea of being deemed “clingy” or “needy” was anathema. Like so many other girls, I wanted to be a Cool Girl. I didn’t put demands on his time, I didn’t make a big deal out of it when he forgot my birthday, and I never brought up our future. Most detrimental to our relationship was the fact that I never asked him to integrate me into his life; I never met his family and we only hung out with my friends, never his.

I broke up with him when I decided he was never going to give me what I needed. He felt blindsided. I learned (with the help of therapy) that by not making my needs clear to him, I also contributed to the failure of our relationship.

After that (and after watching Brene Brown’s TED Talk multiple times), I decided I would be wholly and authentically myself in future relationships. I learned that the hard, scary reality is that if you don't give someone the chance to see every part of you — even the ugliest bits — you've never even given them the chance to love all of you, and you're selling yourself short. It’s a risk, but a couple years later, when I met someone new, and he seemed to be able to provide all the things my previous boyfriend could not or would not, I was fully myself, and I fell hard and quick.

I documented this short, failed relationship that collided with my first endo surgery three years ago, so I won’t recount the story here. I wrote that essay roughly a year after our relationship ended. If you were to go back and read it, you might notice the sense of sympathy I felt for him. When he broke up with me a couple weeks after my surgery with no coherent explanation, I gathered what few clues I thought I had based on things he had said and told myself that having to deal with me and my endometriosis was just too big of an ask and he wasn’t ready to step up. And I didn’t think he should have to.

This might make you think he wasn’t a good guy. What kind of a schmuck doesn’t stand by someone they are dating when that someone is going through a medical odyssey? (He even said as much when he was insisting it wasn’t the endo that was driving him away.) I didn’t see it that way. To me, it made sense that a young, good-looking guy would not want to date someone who was in chronic pain, who was too tired to go out, who often didn’t want to be touched.

As it turns out, he was a shitty guy for other reasons that had nothing to do with the endo! I found out later he had cheated on me among other unsavory details. I was upset about it for a long time.

A real shithead.

While the cheating does make him a bad guy, I still don’t think not wanting to deal with the endo makes him a “bad” person, exactly. It’s just like any other preference; I prefer a partner who can engage in interesting conversation with me rather than someone who is quiet. For a shallower example, yes, I prefer a partner who is taller than me. We all have our preferences. It’s perfectly valid to decide you don’t want to date someone who has a chronic illness.

HOWEVER, if he truly did not want to date me because I had endo, and he continues to not want to date someone who is dealing with something similar, there’s a good chance he won’t ever have a quality, long-term relationship in his future. Obviously not every woman has endo, but every woman, every HUMAN, inevitably goes through some shit.

Like my current partner Scott recently told a friend of his, if you’re in it for the long haul, at some point you will be the one taking care of your partner, and at another point, your partner will be taking care of you. Because that’s fucking LIFE, guys.

I couldn’t hear it at the time, but my best friend told me then that if this shitty guy wasn’t up for dealing with a minimally invasive outpatient surgery that was thankfully free of complications, then how was he going to deal with the difficult obstacles life inevitably would throw our way in the future? She was right. Life is full of tough stuff. People lose jobs, family members get ill, if you have children, life will constantly be throwing challenges your way.

This is how I’ve come to consider endometriosis to be a top-notch filter for not just who I date, but who I want surrounding me in my life.

A few months after that breakup, I met Scott through a mutual friend. We hit it off instantly and talked nonstop for a few weeks. But when it was time for him to go back to Florida where he was getting his masters degree, he ultimately decided he did not want to pursue a long-distance relationship, having been down that road before.

Naturally, I was upset. When I found out he was dating someone, I was angry and unfriended him, as one does. We didn’t speak for a year. Newly single the following fall, he popped back into my life, adequately groveled at my feet, and we’ve been happy ever since.

Also let’s be honest, he is very cute.

Just a few months after we started dating again, it became clear I would need my second surgery to treat the endo. This period of time was FRAUGHT to say the least. My surgeon was out of network and out of state, and I had no idea how I was going to afford the preop appointments, tests, and trips between Baltimore and New York in addition to the massive price tag on the surgery. I was in pain more and more often with increasing intensity. Scott was still living and working in Florida at the time. And deep down, I was scared that this would be a repeat performance of my first surgery and Scott would decide I wasn’t worth the trouble. There were countless tearful phone conversations.

When the time came, Scott was in NYC with me and my mom. He was there in the hotel room, unfortunately listening to me shit my brains out and encouraging me to stay hydrated the night before while I endured the bowel prep necessary for abdominal surgery. He was there ensuring me he still loved me despite the thin walls and the fact that I angrily snapped at him whenever he tried to get me to sip some broth.

He spent the hours while I was in surgery with my mom, and while I was in recovery with her, he got my car, which was parked at a friend’s in Brooklyn, and made some stops on his way back to pick up flowers, soup, a pastry, and most thoughtfully of all, cough drops because he knew my throat would be sore from the breathing tube. He drove us home from New York.

He was there through the weeks of recovery, walking me around the apartment in the middle of the night when spasms jerked me awake. He administered heparin shots to my belly since I couldn’t do it myself, saving my mom a daily trip into the city for the five days following surgery. He even went to the store to pick up stool softeners for me when the surgery and the postop painkillers caused me the completely opposite problem the bowel prep caused. It wasn’t pretty.

A few months later, when a friggin cancerous lump appeared on my neck (good riddance to you, Donald Lump), he was by my side again for my second surgery of 2017, a few days before Christmas. What a banner year.

He went through it with me all over again — the heparin shots, the constipation. Half my thyroid was removed through my mouth in a new surgery being pioneered at Johns Hopkins. What does that mean?

If you can’t handle me in my jaw bra, it means you don’t deserve to remove my actual bra.

It means I looked like this.

Friends, I am someone who in my 20s died inside at the thought of a potential boyfriend seeing me without makeup. I cannot be bothered about such things anymore, but letting a romantic partner see me like this was next-level. THIS is what vulnerability looks like. It isn’t pretty. But it’s also what intimacy looks like.

We clean up well when we aren’t wearing jaw bras.

This post is not meant as a way for me to brag about Scott. Our relationship is not perfect and we do fight from time to time (mostly about the dishwasher). Not all people are natural caregivers like Scott, so I am lucky in that way. I’m not nearly as nurturing as he is, and having him with me throughout 2017 made life so much more manageable.

But the point is he isn’t special. I mean he IS special to me, but he is not unique. There are plenty of people out there who are up to the challenge, whether you have endo, thyroid cancer, or any chronic illness. There are plenty of people willing to put up with your crazy family or your mental health challenges or your demanding job or WHATEVER ELSE you think makes it tough to be with you.

Talk about these things. Talk about your endo, or your personal “endo,” whatever that might be. Not talking about it doesn’t mean it doesn’t exist. It doesn’t make it not a fact of your life. Your endo might not be who you are, but it is PART of who you are, and it is part of your life. Those parts make you YOU, and you ARE worth loving. Don’t rob someone of the chance to love you, and don’t rob yourself of the chance to be loved.

And the next time someone can’t hang, don’t be sad. Be grateful they didn’t waste more of your time, and if it makes you feel better, slap a poop emoji on their face.

xo,
S

Endo + The NYC Marathon

Welp, I did it.

I ran — and finished — the New York City Marathon. Since getting into running a few years ago, this was my second marathon. I ran the Chicago Marathon in 2016 and wanted to run another in 2017, but my second endo surgery and a thyroidectomy later in the year sidelined me.

Last November, when my cancerous thyroid was making me want to sleep 14 hours every night, I felt major FOMO watching the NYC Marathon on Instagram. I REALLY wanted to be there running it.

So when the opportunity came around to apply to run for the Endometriosis Foundation team, I applied right away. And then when the EFA team accepted me, I swear to god, I felt my uterus cringe.

In addition to being both my ticket and my motivation to run the marathon, endo was truly my ever-present running partner through training and the race — sometimes for the good, and sometimes not so much.

Training was like a microcosm of my life with endo; even if the disease isn’t affecting me physically, it’s always lurking in the corner of my mind. Here are some reflections on how endo was with me on every training run and every step of the race.

It kept me motivated. In 2015, endo turned me into a shell of myself in more ways than one. A year later, when I wrote about how the disease turned my life upside down, quite a few friends and members of my family told me they had no idea that I had been going through that. That’s because, like many chronic illnesses, endo is invisible. Since my first period some 20+ years ago, I’ve learned how to play through the pain every month, and with the exception of the closest people in my life, no one knew about the physical, mental, and emotional toll because I didn’t talk about it. Why talk about it when it was my “normal?”

Back then I would not have been able to train and run a marathon. I know there are literally millions of women and girls out there who are barely able to to get through day-to-day life, much less run a marathon, and remembering that kept me motivated throughout the toughest training runs. And knowing that dozens of friends, family, and acquaintances donated to help support the Endo Found in my name pushed me through the race’s toughest spots.

Because of endo, I’ve been through worse. Don’t get me wrong — running a marathon is NOT easy. And NYC with its hills and bridges made for a much tougher course than flat Chicago. Even though the first eight or so miles flew by thanks to the awesome Brooklyn crowds and my jolt of adrenaline, about halfway through, I was no longer able to truthfully tell myself “this is easy.” By the time I hit the Queensboro Bridge around Mile 16, a roughly mile-long uphill climb, I was thinking, “well, I could just fling myself over the side…”

By that time, every muscle in my body ached and every step felt excruciating. I was slowing down and I still had over 10 miles to go. But then I remembered that I’ve been through MUCH worse pain than that — endometriosis pain. And endometriosis pain has no set end point. Endo teaches you resilience, and I knew I had been through worse pain than the brutal NYC course could put me through.

At the start!

I felt guilty for training and then running the race. Those who know me well know that guilt has and always is a struggle for me. I’ve always worked out a lot and I always work out hard. So hearing multiple members of my healthcare team tell me to take it down a notch has never been an easy thing for me to hear — or listen to.

So when I told my pelvic floor physical therapist that I had committed to running the race and she reminded me of the ways extensive running could set me back, I felt guilty and ashamed. I know that running tightens your hamstrings and other muscles that support your pelvis, and I know that it also increases inflammation in the body. Both of these processes do no favors for a body experiencing endo.

This is why I decided this would be my last marathon. I couldn’t train for a marathon and cycle sync because if a long run fell during my period, it was hard to take the prescribed rest and find a way to make up the miles. When I got to the race start, saw the Verrazano Bridge ahead, and thought to myself “I want to do this again,” of course I felt guilty all over again.

After the finish!

However, understanding my endo and my body meant I forced myself to take incredibly good care of myself while I trained. When I ran Chicago, I worked out like a crazy person. We’re talking four runs a week; spin, kickboxing, and lifting twice a week; and yoga one day a week. What can I say? After the year I had in 2015, feeling so out of control of my own body, I was determined to override my limitations and do everything I felt like I had missed out on.

Now I know a lot more about endo and the way my body works. And after that conversation with my PT, I understood that my biggest priority had to be finding balance. That’s really not easy to do when you’re training for a marathon. There is just no way you can run 20 miles on a Sunday and frankly do anything else. But I did my best to “partner” with my body. This meant regular acupuncture, massage, Epsom salt baths, cryo and oxygen therapy, and you guessed it — rest.

When I did slip up though, I felt guilty all over again. Stretching my glutes, hips, and hamstrings for about 16 minutes at a time is part of my daily routine since I started PT (whether I run that day or not). This helps keep my pelvic muscles from literally spasming from pain (compounding the pain). When I started training in earnest, this became crucial to my self-care routine along with yoga at least once a week. But if I ever missed a day, it was hard not to beat myself up for not doing everything I was “supposed” to. In fact…

I fell off the antiinflammatory bandwagon…hard. If you’re a runner, you know that at the height of your training, you get ravenous. Or at least I do. I wanted to eat everything in sight. And even though I didn’t go crazy and eat junk food on the regular, my body definitely needs carbs for a good long run, and cutting out bread wasn’t working for me.

Ugly crying as I ran/hobbled over the finish line.

One chronic disease + another chronic disease + marathon training = hardcore fatigue. Nothing compares to the fatigue I experienced prior to having half my thyroid removed. But training for a marathon on top of having endo and half of an already-underachieving thyroid made for some pretty extreme exhaustion. If you didn’t hear from me for a couple months leading up to the marathon, now you know why — I was busy just trying to stay awake past 8 p.m.

Endo changed my body and training for the marathon forced me to come to terms with that. I feel healthy and healed but two years after I ran Chicago, I am two years older with two more surgeries’ worth of scars and I am just not as fast as I was (which was never fast to begin with). It was really hard to accept the fact that even on my best days, I have limitations that are not under my control.

I struggled with self-doubt in a way I hadn’t experienced when I trained for Chicago even though then I didn’t even know if I *could* do it, because I hadn’t ever done it before at all. Then, I was constantly improving, constantly setting distance and pace personal records. After being sidelined for a year, I couldn’t get back to where I was, no matter how hard I trained, and I felt real fear and panic several times while training that I wouldn’t be able to finish the race. Training for NYC was as emotionally and mentally challenging as it was physically challenging.

Ultimately, the community of endo warriors I’ve found inspired me, encouraged me, and made finishing the marathon overwhelmingly rewarding. One of the best silver linings about having endo is the amazing resilient community I found, both IRL and on the internet. Hearing from sisters I’ve met through the Baltimore Flow, Endo Warriors, the Cramped Style Instagram, and other places made the race incredibly touching and meaningful, and I am so thankful for that.

When you have endometriosis, it is never out of your daily thoughts, even on your best days. Training and running the NYC Marathon was no different, but overcoming it and literally doing it for my sisters made it so worthwhile and an experience I’ll have forever.

Now when I have terrible cramps, I can tell myself it’s nothing. If I ran the NYC Marathon, I can get through anything.

xo,
S

Staci vs. Endo: Round 2

One of the biggest problems with endometriosis is the severe lack of doctors who can properly treat it. There are only about 200 endometriosis specialists in the WORLD, even though one in 10 women has it.

This is why most women who have endometriosis end up having more than one surgery to treat it and why I experienced no relief after my first surgery. My doctor, perfectly capable of prescribing birth control pills and delivering babies, simply wasn't trained to properly treat endometriosis. Like most general gynecologists, she performed an ablation surgery, burning away the rogue tissue.

But what I later learned is that ablation surgery only removes the tissue she could easily see. It's akin to melting the tip of the iceberg but not the majority, which is underneath, attached to and continuously growing over my organs. Additionally, it caused scar tissue and adhesions, worsening my pain. 

Though unrecognized as a different procedure by the American College of Gynecologists and insurance companies alike, excision, not ablation, is an endometriosis patient's best chance at long-term relief. It's not a cure, but a surgeon who is specially trained to cut away, not burn, the endometriosis lesions and adhesions can give a patient a better quality of life, improved fertility, and a chance at not having to have surgery every other year. 

So when my symptoms returned in 2016 and rapidly worsened, I didn't even bother with my general gyno. With the help of my friends at Endo Warriors and Nancy's Nook, I did extensive research and found the closest specialist to me who was approved by both groups was in New York City. So in April of 2017, my mom and I took a day trip up for a consultation.

I had diligently sent this new doctor all my records, and in turn, she had diligently read them all before my visit. But the first thing she did was ask me to describe my experience to her. It shouldn't have been a surprise, but I immediately began crying as I recounted not what was in my records but my lived experience of endometriosis up to that point.

I experienced all the usual emotions I have become accustomed to when talking about endo -- self-pity, frustration, sadness, rage, hopelessness -- but for the first time when talking to a doctor about it, I experienced a flood of relief and validation. She had tissues at the ready and she assured me that by the time women got to her, they were usually at the end of their ropes and crying was normal. She didn't suggest antidepressants (like many doctors before her had at the first sign of tears), and she didn't tell me she was stumped since she couldn't prescribe birth control to me. Rather, without minimizing my experience, she told me that my story sounded like a textbook case of endometriosis -- complete with failed surgeries, stymied doctors, and ever-worsening pain.

She's the one who explained why the ablation surgery didn't work and why Lupron was not the "cure" I had been promised. With a five-minute manual exam, she told me my uterus was being dragged back and to the left by endometriosis tissue and that I was a good candidate for another surgery. She also said my pelvic muscles were extremely tight from years of pain and recommended pelvic floor physical therapy both before surgery and after.

The catch was that my doctor did not participate with any insurance plans. The reality is most specialists do not. They spend years training to be able to operate on any number of organs without knowing what they're going to find when they begin since there is currently no imaging technology that can reliably detect endometriosis. The ACOG issue mentioned previously is a huge problem because this surgery is not at all similar to ablation, and insurance companies should not be allowed to compensate it as such. When they do not compensate the more difficult surgery properly, it gives specialists no incentive to participate with insurance plans.

Me during this period of time. Except without the smile.

But where does this leave endometriosis patients? Either suffering or in medical debt. Luckily, I am in medical debt only to my generous parents. When I found out that the surgeon charges $15,000 for the surgery up front -- two weeks before without taking credit cards and without being willing to work out payment plans -- I called my parents crying and told them I would not be able to have the surgery because I couldn't afford it. This $15,000 did not cover hospital fees, anesthesia, the appendectomy I ended up having while I was under, the numerous appointments before and after, the preop physical, the physical therapy, the MRI and ultrasound, the travel to New York and back, etc. etc.

But the financials of endo and the battle I am STILL doing with UnitedHealthcare is a story for another day.

What followed my consultation was weeks of tests, appointments, trips to New York, extreme stress and anxiety, and tears. In short, I was a fucking wreck. Nowhere close to forgetting my breakup after my first surgery, my current boyfriend, Scott, was constantly reassuring me he wasn't going anywhere and he didn't feel burdened by everything my chronic illness and upcoming surgery suddenly demanded of him. My parents were always on the phone with me, telling me they weren't worried about me paying them back at all -- they just wanted me to be happy and healthy again. My best friend was on Gchat with me every day when I just wanted to quit and not have the surgery, giving me pep talks about persisting through the stress and prep, reminding me surgery was in my future whether it was now or later, and it was better to get it finished now. My friends in NYC made the trips back and forth better, meeting me for meals and saving me hotel expenses.

Finally, the time had arrived. The Friday night before I headed up to New York, Scott and I went shopping for the bowel prep items I was to take the day before the surgery. Nothing says romance like a bottle of laxatives, an enema, and Desitin.

This is how you treat yo'self, last-meal style.

We spent Saturday getting drinks and food with my friends; sometimes I even forgot the reason I was there and could pretend it was one of my usual NYC visits. Sunday was Father's Day, and my parents and brother joined us. We had a Father's Day brunch, visited the 9/11 Memorial, and then I had a Father's Day dinner of lemon-flavored laxatives while I pushed Scott out of the hotel room to go meet up with a friend.

As luck would have it, the laxatives took effect when Scott RETURNED, and I spent the whole night running to the bathroom. My surgery was the first one on the books for that Monday, and the laxatives did not appear to be finished with me by the time we arrived at the hospital. 

I seriously started to wonder if it was possible to shit yourself on the operating table whilst under anesthesia. (I asked my surgeon if this was possible. She patted my shoulder and said everyone worries about this but notably did *not* tell me if it was possible or not.)

Soon it didn't matter.* I was out. 

When I woke up in the postanesthesia unit, my abdomen was incredibly sore. My surgeon had made four incisions this time and had called in a general surgeon to remove my appendix, which she said looked "thickened." (Two for the price of one! Except not literally, they charged for both.)

I didn't have my glasses, and I couldn't see anything, which was just as well, since all I wanted to do was sleep. But at some point, the nurses wanted me to go to the bathroom, so they could measure my fluid output. Two nurses helped me up, and suddenly I felt like I was going to throw up. The pain in my abdomen was so extreme, their voices began to sound far away and my vision tunneled. I don't know what I said to them, but they put me back in bed before I passed out. I had never passed out before.

And when they gave me more meds and took me to the bathroom sometime later, I peed into a measuring cup with a nurse in the room with me. I had never peed with someone else in the bathroom before. The indignities of medical care are boundless.

The rest was a blur. At some point they transferred me to another room where a television was on with news about Donald Trump. Someone brought carrot cake in for the nurses. I was waiting for the surgeon, and at some point I heard the nurses say "How long can this go on for?" in response to the news. At that point I said something belligerent and possibly profane about Trump. The nurse offered me some carrot cake.

My surgeon came in and told me she was pleased with the surgery. My ovaries weren't compromised and the only extra organ she had to remove was my appendix. She was confident she had gotten ALL of the endometriosis tissue and was sending it all to be biopsied. 

I was adamant about going home that same day. I didn't want to spend my first night postop in a hotel room, and since the surgeon cleared it, Scott and my mom drove us back. Scott pulled the car around with my favorite tea, pastries, soup, flowers, and cough drops since he anticipated my throat would be sore from the breathing tube. I've never been afraid he would pull a Nicky since.

My recovery was significantly worse than it was following the ablation surgery. I woke up several nights in a row with stabbing pains in my vagina that my doctor said were likely pelvic floor spasms. I couldn't manage a five-minute walk around the building until about a week following surgery. And I couldn't work out until five weeks later (despite having tried to negotiate pre-surgery to get the doctor to tell me I could work out two weeks after).

Now it's been exactly a year. My quality of life has significantly improved. I rarely have pain in between periods, and when I do, it is manageable. I've gone through several periods without needing prescription painkillers, though I am not (yet) rid of them for good. I've progressed in physical therapy (which I will write more about at length soon), and I've returned to my previous levels of physical fitness.

But ultimately, endo IS still a chronic illness. While excision surgery has helped me immensely, it is not a cure, and no one ever promised it would be. I think about my endo every day. I am learning more about managing my symptoms with dietary and lifestyle changes and researching everything I can about balancing my hormones. I still have constant anxiety about needing surgery again; every painful period comes with it insomnia and depression, not just from the pain but from the paralyzing fear of the prospect of another surgery, another $20,000, an ugly new normal, a lifetime without relief. I am STILL battling with the insurance company to get them to reimburse me *some* portion of that $15K since ultimately, their network has failed me by having no specialists in-network (that's a real treat, which I promise to write about at length sometime soon).

But now that my incisions are healed and I am healing internally, I'm newly motivated to work toward not just improving my symptoms, but fixing the system for other women. No one should feel like an isolated freak that doctors don't know how to fix, especially if she has a disease that is actually quite common. No one should have to choose between debt and debilitating illness. I am a white, middle-to-upper class woman -- it's not lost on me that if it was *this* difficult for me to receive care, it is a thousand times more difficult for someone who is more marginalized. Frankly, no one should have to cross state lines to get adequate care. Women should never be dismissed and told their pain is normal. 

So I'm learning as much as I can, never shutting up about my period and endo, and locally have created the Baltimore Flow for women with endo and related illnesses to find credible information, resources, companionship, and advocacy. And of course, I'm running the New York Marathon and raising money for the Endometriosis Foundation (please donate!).

Sure, endo is a chronic illness, but it's also now my life's purpose, for better or worse. Anxiety about worsening symptoms, watching the precarious balance of my hormones, and dealing with monthly pain is my new normal, at least for now. But I've learned about myself -- my body, my resilience, my support network. And I have so much more to do and tell you about.

So thanks for coming along for the ride.

xo,
S

*No one ever told me if I shit myself on the operating table.

I Make Questionable Decisions, You Make Donations

Under Armour model, amirite?

There's something you should know about me. 

That something is that I'm a bit of a masochist. And as such, I've made the decision to run my second marathon. 

<BIG NERVOUS SIGH>

But I'm also a philanthropic masochist with a relentless drive for spreading endometriosis awareness in the hopes that some day, it won't be the devastating disease that it is.

So as I train for this year's New York City Marathon, I'll be raising money for the Endometriosis Foundation of America. My goal is to raise AT LEAST $3,000 by the time I face certain death race day November 4.

Yep, that's where you come in. I recently sent out a fundraising plea to juuuuust about everyone I know, or at least everyone I've ever e-mailed, the first in monthly pleas until game time. Since it outlines why I am running and raising money, I am going to republish it here!

If you would also like to be spammed with monthly updates/shoutouts/fun endo facts, DM me @crampedstyleblog, and I'll add you to the list. In the meantime, read on and DONATE early and often.

xo,
S

---

Friends! Loved ones! ...umm...acquaintances who have the misfortunate of being in my gmail autocomplete!

Hi! It's me, your favorite philanthropist.

Stop groaning, I'm here to bother you *only* once a month until I run the NYC Marathon on Sunday, November 4. Heh, heh, heh. That's right. Much to the dismay of my lovely physical therapist (hi Sam!), I have decided to run my second (and most likely final, ok Sam?) marathon in my college town of New York City.

And why am I telling you this? Because I wouldn't be running the race if I weren't also raising money for a good cause, the best cause, a cause that's near and dear to my heart and uterus -- the Endometriosis Foundation of America.

If you're unfamiliar with endometriosis (then you must have blocked me on Facebook), then allow me to give you a brief 101. Endo is a chronic disease in which tissue similar to a woman's uterine lining steadily grows outside of her uterus causing pain that increases steadily until it becomes debilitating. Endo tissue typically grows around the reproductive and digestive organs but has been located in patients as far from the uterus as the chest and brain. The BRAIN! And the more endo tissue there is, the fewer pain-free days a patient has per month. Here is a very scientific illustration:

It affects one in 10 women and girls, which means in addition to me, there is a very good chance you know other women who have it. Doctors do not understand the causes of it, and there is no known cure; in fact, right now the only way to diagnosis it is with abdominal surgery.

After two such surgeries, I can tell you that really sucks. What sucks even more is that most general gynecologists don't know a damn thing about it, throwing painkillers and birth control at patients; this only masks the symptoms and does not treat the causes. Worse, doctors tell their patients the pain is normal. The average endometriosis patient waits 10 years for an accurate diagnosis. I went to the ER before my GYN agreed to operate; she did not believe I had endo when I self-diagnosed (isn't editing medical texts the same as being a doctor tho?). Because like most doctors, she is not a trained expert in endo (there are only approximately 200 worldwide), the surgery did not improve my symptoms but instead made it worse. You can read more about my experience here, but please know, my experience is NOT singular; rather, it is very representative of what women with endo frequently face.

In summary, for endo and endo patients there is:

- Little to no solid research

- MANY myths and misconceptions, including those spread by doctors

- Very few doctors who know how to treat it

- No cure

- No known cause

- A future that very likely includes either horrible pain or multiple surgeries

But there is hope! And the first step in solving these problems is more research, more education, and more awareness. I am supporting the EFA, because it is their mission to "increase recognition, provide advocacy, facilitate expert surgical training, and fund landmark research." More knowledge, less misdiagnoses, less mistreatment.

NOW! It's cliche but it's true -- every dollar counts. I know that with the way the world is right now, your charity pockets may be a little less full these days. But since we can't depend on the government to even stay open for more than a few months at a time, we definitely can't rely on them to worry their pretty little heads over uteruses that aren't baby-filled (p.s. endo is a major cause of infertility). Since we can't rely on those guys, endo patients are relying on us. 

Here are some stats:

- If you donate $26.20, you'll be donating a dollar for every mile I run/trudge. Because math!

- If you donate $50, that covers the cost of educating one classroom (presumably not in states that equate sex ed with promiscuity, but you know what I mean).

- If you donate $100, you'll be paying for the EFA to send *accurate*, informative resources to FIVE healthcare clinics.

- If you donate $2,366, you'll help me take the lead on my team and beat someone named Rebecca who has already raised $2,365, and you KNOW I AM VERY COMPETITIVE AND WANT TO BE THE BEST FUNDRAISER (especially since I certainly will not be the fastest runner).

- If you donate $3,211, you will singlehandedly have let me beat my Chicago Marathon total of $3,210 that I raised for victims of domestic violence two years ago.

But seriously, if you donate even $1, I will be touched and forever grateful and will probably praise/embarrass you somehow on social media. And if you're short on cash right now, NO WORRIES. After three surgeries inside of two years, I get it. Just wait for the June e-mail to roll around. Or July. Or August, September, and October. Because you have until right before the race (though if you do it now, you *could* just start ignoring my monthly e-mails with a clear conscience, just saying...).

PLEASE donate here: 

https://www.crowdrise.com/o/en/campaign/endometriosis-foundation-of-america-nyc-2018/staciwolfson

Please also feel free to pass this along to anyone else who you think may be into supporting 200 million women worldwide. And please stay tuned for more endo info, updates on my training, fun surprises, and cat pictures. Because you made it to the end, and the end is where you get cat pictures!

Love,
Staci