Battling a reproductive condition can feel isolating. Pressing through my athletic adventures with endometriosis is humbling, exhausting and a test of my mental grit.
Signing up for a virtual duathlon almost a week ago seem like a good idea until my menstrual roughly cleared its throat Saturday morning. I was on day two and shamefully I woke up questioning if it was going to happen. This morning's wake up call stemmed from a burning sensation that rushed from my vagina, past my rectum and traveled up the lower parts of my back. My hands and face are slightly swollen and feet grew angry once touching the cold laminated wood floors in my bedroom. Without hesitation, I pulled back my covers while my husband was nuzzled inside and checked the white sheets -- there's no trace of my pain on the linen today. While wobbling past a hairball gift wrapped in my hallway from my cat, I started seeing doubles on the way to the bathroom. My pride wouldn't let me ask for help even though my husband would understand. Before sitting down, I checked out my blue and black checkered pajamas and felt defeated; they were not as fortunate as my sheets. I spent 45 minutes in the bathroom asking myself if doing a virtual duathlon during this pandemic and an endometriosis flare is even possible. After showering off, I reminded myself that this is not unfamiliar territory. I took two acetaminophen, allowed my husband to supervise as I made old fashioned oatmeal and glanced at my road bike on the kickstand. My virtual duathlon happened but not for a number of hours.
Living with Endometriosis and an Assortment of Chronic Conditions
If I was completely honest with people when they asked me the general question of how I'm feeling, I would rarely respond that I'm okay. Despite my transparency of being an athlete with chronic conditions, it's not easy being that vulnerable with anyone--especially the general public. Without sounding like a pessimist, my earlier experiences conditioned me to believe that a great deal of people lack empathy for things that they cannot see or have a personal connection with; invisible chronic conditions are no exception to this conversation.
My relationship with endometriosis date back to when I was 9 or 10 years old. Most people who menstruate go through their cycle for a consecutive amount of time - roughly 3 to 7 days. It comes back like a serial killer in an old school scary movie every 28 to 35 days; I couldn't predict my cycle for the first five years. My unpredictable period brought on mind numbing menstrual pains, nausea, fatigue and uncontrollable swelling that distorted my legs and stomach temporarily every month. Like most people, earlier gynecologists led me to believe that painful cycles are normal. My mother went through this same rites of passage until she was pregnant and carrying me. For some reason, childbirth took away her pain but it didn't stop the heavy breakthroughs that so many people normalized over the years. And because of this logic from young, I told myself to stop complaining despite its worsening symptoms.
By the time I entered my first year of Laguardia Community College, I encountered everything from blackouts to full blown body breakdowns while walking. Traveling from Brooklyn to Long Island City, Queens took close to 90 minutes each way. Sometimes the pain was so severe, I'd let myself go to sleep past my stop and wait for the train to turn the opposite direction because I found a comfortable position in a window seat to pass out. I'd always pray that someone didn't rob me or think I was homeless and harass me, which rarely happened. There were times where I had to rely on strangers to get me home; sometimes I never made it there. People would panic and I'd become friends with the emergency room so much that I started denying services. Getting billed for thousands of dollars for 3 Tylenol and a makeshift heating pad added on an extra layer of insult to my pain. Once in a blue, I'd get a Toradol injection that burned like hell into the muscle and I'd be okay for the rest of the day. Eventually treatments evolved to birth control pills that made me feel suicidal, emotionally erratic and at times, nonstop bleeding. At the time, doctors' solutions were to prescribe me a different birth control pill with less side effects until it eventually stopped working.
In hindsight, I remember admiring athletes in various disciplines but I didn't participate in much sports. Some of it was due to lack of accessibility and other times, I feared accidents. When I was younger, I remember my mom making a joke about how she avoided swim class by telling her teacher she had a menstrual every day. I didn't have to wait for that joke because the first three days of any cycle would paint spots throughout my clothing within two hours -- but doctors told me it was normal. And for years I did my best to not be defiant and ask further questions as the condition grew worse. When I started paying for my own health insurance, I abhor the idea of silence. I was determined to find out what was happening to my body.
A diagnosis didn't surface until 2017, age 32 and a long way from 9 or 10 years old. By this point, I was misdiagnosed for pre menstrual dysmorphic disorder, had an internal sonogram to check out my ovaries for polycystic ovarian syndrome, suggested that I might be exaggerating my pain and almost died from taking a generic version of birth control pills. I was mentally unraveling from the countless times of having my blood drawn to invasive examinations with no answers. The only conditions that I knew up until this point was sciatica, a herniated disc, disc degeneration and light gastrointestinal issues -- and I think those were enough to make me feel like damaged goods. With little answers and frequent flare ups, I started losing hope. While training for several marathons, I found out I was pregnant for the umpteenth time; I stopped counting after my fourth miscarriage. Within a week, I experienced sharp pains similar to what I experienced in the past. Sure enough, I encountered pregnancy loss -- this time was twins. Less than two weeks later, an emergency room doctor called me into his private practice for a follow up. My sonogram showed ovarian polyps, 21+ fibroids and a series of red flags. A fifteen minute conversation and a simple examination pushed me into laparoscopic surgery within a week. Four incisions on my stomach and a week later, I was diagnosed with stage 3 endometriosis, quickly shifting into stage 4. For those who have no idea on what this means, stage 4 endometriosis causes lesions on your fallopian tubes, bowels, pelvic lining and ovaries as well as attaching itself to organs -- all of which I am experiencing despite some of the removal from the laparoscopic procedure. I feel much better than years ago but there's no cure. Some days I am devastated by this condition but I remind myself to continue pressing forward; and that's what I intend to do.
How I Prep for Training Runs & Race Day with My Pal Endo
After destroying close to ten years worth of useless crap in my home office, I was too drained to pull out race gear the night before. I rummaged through my fresh laundry pile and laid out some items to photograph. Until now, I realized I rarely put up the real version of what race prep looks like for me. For the sake of social media, I don't show people how many pads or tampons I throw into my drop bags even when I'm not scheduled for a period. Nobody knows how much I refuse to leave home until I have a pair of clean underwear in my bag to go anywhere. Depending on the distance, I pack anywhere from one to three pairs. I worry about this very thing when I start doing triathlons but I will cross that hurdle when I get there. Emergency funds are set aside for a quick trip to a bodega or pharmacy just in case I need acetaminophen after an event. I am too paranoid to take it until hours later even if the pain is excruciating. If it's the first three days of a cycle, changing clothes are a must. In ways, it makes me grateful that the weekend's race was a virtual run because I have more control over the starting time and simple luxuries like accessibility to a clean bathroom. And yes, wipes are definitely on the list when your body is a whole damn mess.
On average, I train anywhere from 4 - 5 days a week. These days, I allowed Coach Morgon Latimore to craft up my training schedule since the world of triathlons are a new territory for me. I haven't abandoned distance running but before COVID-19, I shifted some of my focus on weaker points: Swimming. It's been two or more weeks since I've hit the pool and slightly nervous but excited for my return. Some folks who I spoke to and are well versed in triathlons emphasized making up for speed through the cycling portion. I'm sure this advice varies from person to person but considering it's the longest leg, this makes perfect sense to me. At the moment, I'm averaging around 15 - 16 mph while riding my bike. Realistically, this will be closer to 13 - 14 mph outdoors on an uninterrupted path because nothing is truly flat. Eventually I'll invest in a higher end bike, a better stationary trainer and software program that will mock the hills that I'll need. In the meantime, I've been practicing social distancing as much as possible, limiting most cycling sessions indoors. Balancing those two disciplines scaled back my running mileage completely. Initially I worried that I'd be unable to withstand longer distances but I trust my coach's judgment. He has a decorated resume and trains a stellar group of athletes for over a decade. And frankly, he was right. I'm still able to maintain a 15 minute pace. Once I master the foundation, we'll work on speed in all disciplines. Admittedly it feels good to start from the beginning with a coach. When I started this journey, I didn't have one on one instruction. It's not a luxury that many are afforded and I don't take this for granted.
Even with a coach, there's certain things that he cannot provide much advice on for training runs to race day. Endometriosis, along with my other conditions, would run my entire life and schedule if I'd allow it. Instead of looking at it as a burden, I strive to do my best in planning well off in advance. These days I can calculate my menstrual much better than before. I am very strategic with using free time to create checklists of what things I will need for the week to train. This list includes everything from clothing changes, equipment required for each workout to carving in free time blocks on my calendar just in case I experience a flare up. Unlike those who experience light cramps on the week of their menstrual, endometriosis can possibly keep you in pain all of the time. If you're in constant discomfort like me, you learn to assess your pain on a scale. Most times I feel a dull ache that rests on certain parts of my body while other times, it's a sharp stabbing pain that travels throughout my lower abdominal area and flows down to my quads.
Oftentimes I'm questioned why I would want to do exercise with these conditions. I cannot attest to anyone else's reasoning but I feel a mental weight lifted off me when I'm able to move. After a certain amount of time, my pain sometimes leave with the movements versus staying still. Despite my passion, I respect my limitations when the cramps increase. I don't believe that all pain is just weakness leaving the body. Contrary to the overused statement, I strongly believe it serves as a good indicator to remind us to slow down and listen to what your body is trying to tell you at a specific moment.
When I am able to perform, I remind myself to stretch frequently despite my impulse to skip it. I foam roll and stretch more than I ever did before. Eating within 45 minutes post workout is critical especially when my menstrual is present. Stage 3/4 endometriosis causes excessive blood clotting and I get lightheaded and swelling more than the average bear. Last year at the Chicago Marathon, I gave another runner a few of my chews at the end because she needed it and my drop bag had food. Unfortunately that bag was misplaced for nearly a hour. I went from laughing about the misplaced items to unable to form coherent sentences. Medical was called and I was surrounded by several runners and staff -- each of them either slathering clothing on me or manually warming up my body; the temperatures didn't work in my favor neither. A glucose reading picked me up at 20mg/dl. For those who are unaware, the average reading is between 70 - 140mg/dl. Most people go into a diabetic coma and aren't able to speak. I'll spare you the graphic details on what the medical staff did to stabilize me but know this heightens my paranoia much more.
Running Scared With Worst Case Scenarios
One of my biggest fears is to look like a real life shit emoji during a race; my other is having a visual endometriosis episode. The latter came to life during the 2019 New York City Marathon and I tried hard to hide my devastation. Before my diagnosis, I chalked it up to being cursed with visually dramatic appearing periods. Knowing that the first three days looked the worst, I did my best to not sign up for events over 10K during my expected menstrual week. As I ventured off into marathons and obstacle course races, I tried to develop contingency plans that would allow me to continue all of my ventures. Unfortunately I haven't stumbled upon a menstrual cup that's comfortable enough for my severely tilted pelvis but I could wear pads and tampons. It requires frequent changes and a creative packing technique. Typically I aim to wear leggings with deep pockets for easy access to slip in a few pads and tampons since I don't wear running belts often. And if I'm not at an event that bans vests, I stuff a handful of items to carry with me. I packed to the best of my ability for the NYC Marathon but wasn't fortunate enough to make it to a port-a-potty in enough time to prevent spillage. Although my leggings were dark, it was enough to see on a flash camera. At the end of the race, I smiled but was super self conscious about the accident that I was forced to push through for last 13 miles.
After a day or two of thinking about it, I made peace with what happened because nobody should be ashamed of their disability nor feel alone. I made a public post that had mixed reviews. Although people were very supportive on my page, some felt excited to make fun about a vulnerable moment. People reduced it down to me being a "nasty bitch who didn't change her pads" and "seeking another excuse to move slowly." I'll never apologize for my pace and frankly I don't owe assholes on the internet an explanation but some comments stung a bit for a few minutes. I'm not bothered much by the name calling but by the gaslighting that occurs to people who suffer with invisible conditions. It is easy to reduce someone's pain when you don't have to experience it. And because people are scared about being targeted or reduced down to "making excuses," many suffer in silence. There are even people who go through similar conditions and feel as if another person should simply get over it. Sometimes our lack of empathy or focus on self can make us forget that two people can go through the same thing and process it differently. I've encountered people who cannot fathom moving through endometriosis and seek advice on how they can push through the pain. Realistically I'm not qualified to offer such advice because I'm not a medical professional. Additionally, endometriosis is so complex that two people could be in the same stage but don't go through the same symptoms. The same can be said for someone who suffers with sciatica, disc degeneration, lupus, multiple sclerosis and other silent conditions.
Endo Pain Athlete: When to Push Through the Pain or Calling it Quits
If you made it this far, I thank you for reading about my experience. Some of you may have a chronic condition; others might be curious. There's even a few who might side eye and scrutinize this entire blurb -- and that's cool because it's not for you. While I may not be able to offer a ton of advice, I can make light suggestions on how you and/or your loved one can assess if you should push through pain or call it a day:
I'll be frank: Having an invisible condition is exhausting. There are days where I feel like a failure and disgusting. My body makes me feel like it's the biggest heckler that walked the planet and it's nothing to do with what bounces back in my reflection. It's even harder when people try to invalidate your condition. If you encounter someone like this, those folks ain't part of your tribe -- ditch them.
Once upon a time, I remember being one of those assholes who tried to tell someone with a health problem that they were being "soft" until I became that person with a crap ton of health issues. I don't wish these things on nobody but I can honestly say that my conditions are my humble pie. Any time that I take my mobility for granted, I reflect back to the moments when I couldn't do the simplest tasks on my own. When I am struggling and pushing out a 14-15 minute pace per mile, I celebrate just as hard as I once did when I was running 11 - 12 minute paces. On days where my body doesn't want to cooperate, I reward her by sitting my ass down and finding something positive to distract my brain from wandering off into the wilderness. Even if you're able bodied, every person encounters a shitty day. Close out all of your browsers and restart your entire system when you're ready. When your body is ready to reboot, it may not be 100 percent but it'll be ready to take on whatever activities your mind and body are capable of performing.
Latoya Shauntay Snell
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