When we last left our heroine (::ahem:: me), she was somewhat arrogantly thinking she had nothing left to write about endometriosis. Lulled into a false sense of security by doctors' promises of renewed health from a "miracle drug" -- only strengthened by my desperate desire to feel better -- I genuinely thought that was the end of my story. I rather naively wondered why other women went through surgery for endo again and again rather than just putting up with hot flashes for a few months and then being done with it.
Oddly, even knowing that it's completely natural to want to believe the people you pay to care for your health and know these things, I feel some shame around this. Why did I think an obstetrician (who admitted she did not know how to treat me) and a gynecological oncologist had answers no one else had? Why didn't I listened to the tiny voice in my head reminding me that chronic illnesses like endo do not have a cure?
But enough of the beating myself up, and let's get back to 2016. Not long after I finished writing the above-linked essays on Medium, my fling with menopause ended, and my period came back after an 11-month hiatus.
I remember it just as well as I remember my first period.
It was Memorial Day weekend, and I had been dating this guy for about a month. My friends and I went to a party he was hosting, and he was oddly standoffish toward them, so I did what any of us would do, and drank way too many mixed drinks to try to ignore the awkwardness. Since his house was nearby and I was in no shape to drive, I crashed at his house nearby.
I woke up in the morning unsurprisingly feeling like what Mark Zuckerberg has looked like at his Congressional hearings. As it is, I don't drink much or often, and as I've gotten older, when I do, the hangovers are significantly worse. His house was stifling with early summer heat, my head was pounding, and the smell of Indian food he cooked the night before made me wish for sudden death.
I hustled to get myself together and out the door so I could meet my friends at a brunch we had planned. I was already running late, and my stomach was churning. The guy I was dating was funny, cute, and smart, but as I rushed to leave, surrounded by a stuffy cloud of curry smells, I thought to myself, "I don't ever want to come back here." And when I left, I texted my best friend and said, "I don't know how much longer I can date him." I was put off by the way he acted around my friends, and even though through previous conversation I thought we had a spark, in actual practice, it just wasn't there.
When I got to brunch, my roommate at the time came down to the front to meet me to walk me to where everyone was sitting, and I burst out in tears to her for no reason I could articulate. And when I calmed myself down and sat down to eat with everyone, the violent swishing of old booze around my stomach began to mix with a pain that was much more common in my usual day-to-day -- that of gnarled talons in my uterus clawing their way from the inside out.
The cramps continued and worsened the next day, and when my period finally came back in the evening, it was heavy and painful. Naturally at the same time, the guy I had been dating called to say he wasn't feeling it and thought we should just be friends.
He was 100 percent right. It hadn't been 24 hours since I had said the same thing privately to my bestie. But the pain, the two-day hangover, and the sting of rejection wasn't a great combo for me. Plus, even though I knew what he was saying was true, I also knew he was a good guy, and after Nicky, I just really wanted to make something work with a decent person.
So, alone and curled up in the fetal position on the couch in the dark, hormonally imbalanced AF, I did a mental spiral and cried and cried, positive 2016 was going to be a repeat of 2015 -- a year of seemingly endless sickness, pain, and heartbreak.
Thank doge, it wasn't. A couple days later, I felt much more clearheaded. The pain subsided, and I quickly dismissed it. I reasoned that since it had been 11 months since my last period, it was only to be expected the first one back would be bad.
I have NO idea if there is any scientific truth to that, but for a while, it seemed possible. My periods, while not great, were manageable. But with each cycle, I noticed with dismay that my symptoms were coming back and getting worse and worse.
My periods slowly got heavier and longer. I started bleeding in between periods. I started to need my rotation of painkillers again to get through the worst days. Soon it was taking hours for the strongest ones to kick in -- if they even did at all.
But I pushed through. I was *done* with endometriosis. I had placed it firmly in my past. I was living my life now. I was training for the Chicago Marathon in the fall. I was volunteering with victims of sexual assault and domestic violence. I was toying with the idea of writing a book. I was traveling. I was planning the next stage of my career. By the fall, I was dating again, and this time it was a serious relationship.
And I had no intention of putting ANY of this shit on hold for my body. It had had its moment, and now it was MY turn.
I'm a control freak and I thought I could control my symptoms. I would eat really clean! I would work out and get lots of sleep! I would meditate! I would barely touch alcohol! I would take vitamins and supplements religiously! Frankly, all these plans did was cause more stress and guilt. I already did most of these things and doubling down on them wasn't making a noticeable difference. My periods continued to worsen every month, and instead of just accepting what I knew deep down -- that endo is a chronic illness and mine likely hadn't ever been treated properly -- I looked for ways to blame myself. If I had cramps, it was probably because I had a drink the week before. If my period was heavy, maybe it was because I didn't get enough rest.
There were four points during this period of time that made it impossible for me to ignore that I was sick and getting sicker:
- The day before I ran the marathon, I was sick to my stomach. I'm sure the nerves played a role, but I also had my period. I could barely eat a normal amount of food, much less what I wanted to eat in order to fuel for the race. To top it off, I had the shits. The first thing I did when I woke up before the race was take a preemptive Imodium and a prescription painkiller before the cramps could even get started.
- I went away for a long weekend in February with my now boyfriend, Scott. It was a reunion of sorts with Marines he had served with overseas and their significant others. It was SO. MUCH. FUN. But as happens when one has endo, I had my period and had to take some breaks to lay down throughout the weekend until the painkillers could kick in and I could rejoin the group.
- Similarly, I had my period during a work trip. I had a new boss and I wanted to get to know her and make a good impression. Additionally, I work remotely and don't often see my other colleagues. I had miserable cramps during dinner. And when someone suggested getting drinks at the hotel bar with the new boss after dinner, I couldn't turn down the opportunity and be the only one who declined even though I desperately wanted to get into bed and wait for the cramps to subside. Instead they got worse and worse and at one point, I was wondering if I had bled through my tampon, making it damn near impossible to focus on contributing any kind of witty conversation. By the time I did get to bed, the cramps were so bad, I couldn't fall asleep.
- Finally, in April, I ran my last race, Baltimore's Sole of the City 10K, before last weekend's Cherry Blossom 10-Miler. I had been feeling bad that whole week while waiting for my period to start. But I was excited to run, since the year before I had a PR pace with which I surprised myself. So I ran my little heart out, pushing it right before the finish like I always do, except several meters before I reached the finish, I started to feel violently ill and had to pull over to the side where the crowd cleared a space for me to throw up. I dry-heaved and didn't throw up, thankfully. But in all my years of working out, I've never come that close to throwing up, leading me to conclude that it was early shades of an endo flare.
During each of these instances, I wondered what my life would look like if I wasn't dealing with this chronic pain. Would my marathon have been faster and smoother if I had been able to eat more the day before (and perhaps had more iron and less drugs flowing through my body)? What did I miss out on with my boyfriend and his friends while I was getting teary by myself in bed? Would my career trajectory look different if I didn't have to network through the pain? Would I have PR'd my second Sole of the City if I hadn't had to nearly vomit?
Honestly, these are the least of the problems endometriosis causes me and other sufferers. The ways it affects your life run deeper, and they're more devastating. But they're examples of how no matter what your drive to push through is, no matter how disciplined you are in trying to control it, it creeps into your daily life. It's always in your thoughts. It becomes who you are just as much as being a marathon runner or a veteran's girlfriend or a driven professional does -- even though that's not at all what you want for your identity.
So eventually I had to accept that despite looking strong and healthy on the outside, I was sick and in pain on the inside. I'll always be proud of the resilience that has gotten me through all the tough spots, but I had to recognize that I shouldn't have to live with these tough spots at all. I shouldn't have to take a preemptive painkiller to get through the day. I shouldn't have to take breaks from simply sitting around and shooting the shit with new friends.
But by this time, I had written my Medium articles and through them, the beautiful, strong sisters of the endo community found me, and I was armed with more knowledge than I had ever had. I would not go through another bout with menopause and I would not allow myself to be bounced from doctor to doctor.
This time I was ready for real answers and a plan.
To be continued...