He’s Just Not That Into Your Endometriosis
The Silver Uterine Lining
I met Nicky the weekend before Christmas, roughly a month prior to the Great Uterine Meltdown of 2015.
A couple of girlfriends and I went to see a late afternoon performance of the Nutcracker and then headed to the restaurant across the street for dinner. There was a line just to get in the door, but one of my friends noticed a new spot had opened a block down the street, so we headed that way and grabbed a seat at the bar.
Still nursing a Philadelphia-sponsored hangover from my roommate’s 30th birthday celebration the night before, I couldn’t even think about ordering booze with dinner, and I assumed that was why our bartender seemed a bit standoffish.
“Deal with it” was my internal response to him.
But as my friends and I chatted, he caught my eye a couple of times and didn’t look particularly hostile. And when I went on a rant about how New Year’s Eve isn’t a “real” holiday, I caught him eavesdropping and snickering to himself at my jokes.
A week or two earlier, I had given one of my friends a hard time for not leaving her number at a restaurant where a server was clearly into her. There was nothing to lose, I had reasoned.
Not that I had ever done it before myself.
So to be obnoxious and make a point to her, I followed my own advice and left our bartender my number. By the time I got home, I had two text messages on my phone.
“I’m glad you did that.”
“This is Nicky from the restaurant, btw.”
We texted a bit, and it turned out he wasn’t being standoffish. He admitted he wanted to ask for my number but felt intimidated. I thought it was cute, and we decided to go out for drinks a couple days later.
That Monday, I was a bundle of nerves. Having gotten out of a long-term relationship several months prior, I hadn’t been on a proper date in literal years. I kicked myself for leaving him my number, imagining all of the painful awkwardness that awaited me.
But while doing his last-minute Christmas shopping that day, he texted to tell me how the only thing making it bearable was knowing he was going to see me later, and I realized my anxiety was mixed with a genuine excitement I hadn’t felt for someone in a long time.
He chose Annabel Lee, a cozy, Edgar Allan Poe-themed bar and restaurant a few blocks from my house. And one of my favorite spots in Baltimore.
We were off to a good start.
A few minutes after getting there, my nervous energy melted away. It’s totally cliché, but we clicked instantly. He was funny and charming, and we had a ton of things in common, starting with but not limited to an obsession with “Serial,” a deep and abiding love for our respective cats, bookworm tendencies, and mad crossword puzzle skills.
He had walked there, so I offered to drive him home. When we got there, his eyes lit up.
“Hey, I have an idea! Let’s go ice skating!”
“What? It’s cold and rainy. And it’s 11:30. There’s no way it’s still open.”
“We’ll break in,” he said smirking as I laughed.
He didn’t want the date to end, and neither did I. But I had to be at work early the next day.
“Fiiine,” he said. Then he leaned in, playfully tugged my hair, and kissed me three times before getting out of the car.
“For what it’s worth, I hope you have a terrible day at work tomorrow.”
It was the best first kiss of my life, and I was utterly smitten.
I saw him again on Christmas Eve day. He came over and we did crossword puzzles before he headed to his parents’ house for dinner. I was surprised when he told me that he told them about me. We hadn’t even known each other for a week. But later that night he asked me to come out and meet his friends too.
And the holidays slipped by happily just like that.
He let me know regularly on no uncertain terms that he was thinking of me all the time and proud to be dating me. There are regular reminders throughout the media and pop culture to girls navigating a beginning relationship not to be too clingy, not to let him see your insecurities, not to ask for too much too soon, and on and on. But I had made a promise to myself in the past to be my authentic self in my relationships; who has the time and energy to try to read someone else’s mind? If I wanted to see him, I told him I wanted to see him. If I didn’t want pasta for dinner, I told him I didn’t want pasta. When he admitted to me that he smoked, I was honest and told him I hated that.
To my delight, he adored me — flaws and all.
A couple weeks later, he came with me to a friend’s wedding. Despite not knowing anyone there, he was the life of the party. He charmed the mother of the bride, talked sports with the guys, and we danced until I couldn’t tolerate dancing in heels anymore. People I knew from high school stopped me to tell me how awesome my date was.
I was proud to have him on my arm.
After the wedding, we met up with some of his friends out at a bar. He held my hand and kissed me when he noticed another guy leering at me. He was proud to have me on his arm, and I was happy to be his.
When I got sick in February, he was with me every step of the way. When he wasn’t with me, he was texting regularly to see how I was doing. He offered to bring food to the ER while I waited for my test results. Later that night, he came over and cooked for me, even though I could barely eat. When he went on a snowboarding trip a week or two later, he called every night and texted me photos each day.
I loved how he didn’t take himself too seriously and how comfortable he was in his own skin. And to top it off, he was unerringly thoughtful. He stocked his house with sugar just so that I wouldn’t have to drink my coffee black when I was there in the morning. One day he texted me a picture of the business card I had scribbled my number on that first night at the restaurant; he had saved it.
Though we hadn’t yet officially discussed titles, he was the perfect boyfriend. And I had fallen in love with him much more quickly than I thought was even possible.
As my surgery approached, I sensed some distance. When I told him about how the living will in the paperwork I had to fill out upset me so much that I just didn’t do it, he kind of shrugged it off, an uncharacteristic lack of empathy. At one point he commented that I had been so “vivacious” when he met me and now I was sick and sad all the time. It wasn’t a complaint — more a concern triggered by some misplaced sense of guilt, as if he had caused my illness. But it felt like something had shifted. I pushed the unsettled feeling that was gnawing at me to the back of my mind, taking my best friend’s advice and focusing on myself the week of the surgery.
The more I learned about the surgery, the more nervous I became not for the surgery itself, but for the day before. Though laparoscopic surgery is minimally invasive as far as abdominal surgeries go, I had to ensure that I was completely, um, cleansed beforehand.
In other words, aside from a very small breakfast that morning, I was to eat nothing all day but clear broth and Jell-O. That is, whenever I could find the time or the appetite in between trips to the bathroom to shit my brains out, courtesy of a metallic-tasting, “lemon”-flavored laxative, the likes of which I had to drink two bottles of over the course of the day.
After that day, I will never EVER understand how someone could choose laxatives as a weight loss method.
When Nicky picked me up the next morning before the surgery and offered me some of his coffee, I turned it down, compliant with the rule that I was not to consume anything after midnight following my lovely day in the bathroom. He made this face that said, “Come on, how are they going to know?”
But since the preoperative information packet sternly stated that I was not allowed to have “even a Tic Tac” before the procedure, I shook my head. I wasn’t going to risk having to guzzle laxatives again.
Nicky parked while I signed into the ambulatory surgery department. My mother was there already in the waiting room, and my father was coming a little bit later. Although I repeatedly told him in the days before that he didn’t have to stay (and meant it, in keeping with my authenticity rule), Nicky pushed back, insisting on sitting with my parents, whom he hadn’t yet met, while I was in surgery.
When I wasn’t scared shitless (or laxative-less?), I was completely enamored.
The preop preparation was a blur. I changed into a gown, surgical stockings, and extra warm socks for the cold operating room. Nurses and anesthesiologists took my vitals and explained to me everything that was going to happen during the procedure.
After knocking me out with anesthesia, my gynecologist would make two tiny incisions — one in my belly button and one a few inches toward the midline and above either my right or left hip. She would then be able to insert a scope to identify any endometriosis implants and officially diagnose me. In the other incision, she would insert other instruments to excise or burn away the offending tissue.
In the procedure, it sounded relatively mild (despite the previous day’s brutal prep). It was considered a minor surgery, and multiple accounts said the recovery was only a couple days long.
In so many ways, modern medicine for women is so far behind. According to the Endometriosis Foundation of America, it takes the average woman with endometriosis 10 years to get an accurate diagnosis. A DECADE! But in other ways, it’s pretty miraculous. Just a generation ago, a woman with endometriosis had two options — suck it up and play through the pain if she wanted a shot at kids someday, or undergo a hysterectomy if she didn’t care about fertility. Here I was, about to have my endometriosis zapped, and I was planning on being back at the gym in two, maybe three days.
Right before they were about to take me back to the operating room, my doctor came in to wrap up the preop work.
“So if one of your tubes looks really bad,” she said, “do you want me to just take it out?”
I knew what tube she meant. I just didn’t know removing part of my body was a potential part of this deal. I thought this was more of a spring cleaning situation.
“OK, well I’ll try not to.”
I felt panic rising in my chest, but at that moment, Nicky and my mother came back to see me one last time before the surgery. He teased me about how I looked with the surgical cap covering my hair and my glasses on.
As quickly as the panic came, it dissipated, and I was ready to get the surgery over with.
Anesthesia is a powerful thing, so I don’t remember much about the rest of the day. I remember my doctor coming in and explaining that my long-held theory was correct; I indeed had endometriosis. It was mild compared to other cases, but the way it had grown caused me a lot of pain. One of my ovaries, which are suspended in the body and somewhat free-floating, had become surrounded by endometrial tissue and adhered to the structures around it.
This sounds extreme, but I assure you, after having heard many other women’s stories, this was nothing. Some had had their appendices and uterine tubes removed; an acquaintance explained to me how one of her ovaries had become so entwined with endometrial tissue, that it was actually being pulled down and out of the cavity where it belonged.
I also remember my doctor excitedly showing me a picture the laparoscope had snapped of what looked like a small concord grape. It wasn’t endometriosis. She didn’t know what it was, but she was clearly fascinated. I was so foggy from the drugs, it didn’t occur to me to be alarmed when she told me she had sent it to be biopsied.
When I read Lena Dunham’s description of her own endometriosis surgery and she recalled her doctor describing the recovery as feeling like “Muhammad Ali punched ya in the tummy,” my first instinct was that that cutesy description didn’t really cover it. But then I thought about what it would actually feel like to be punched in the stomach by heavyweight, and yeah, that pretty much sums up how I felt the next day.
On top of it, during the surgery, they had pumped my abdomen with gas. This wasn’t your standard digestive gas, so gas pills weren’t going to relieve it. In fact, it wasn’t in my digestive system at all; it was under my diaphragm, and the referred pain I felt was up by my shoulder and around my collarbone. When the doctor called to see how I was feeling, she told me moving around would help. But as you can imagine, all I wanted to do was sit on my ass and binge watch “Broad City” and “The Unbreakable Kimmy Schmidt.”
(Pro tip: Don’t watch things that will make you laugh when you feel like you’ve gone five rounds with Muhammad Ali.)
Truthfully, it was incredibly naïve for me to think I’d be back at the gym in a few days. I wasn’t bedridden, but I wasn’t exactly up for kickboxing either. I had to sleep on my back every night because my stomach was too sore to sleep on it or on my side, and every morning I struggled to do what felt like a crunch in order to get up and out of bed. My incisions were no more than a half an inch each, but they hurt like hell.
I’m a gym rat, and not being able to be at the gym every evening was making me stir crazy. I was back at work that Monday, but I didn’t know what to do with all the extra time in the evenings. I wasn’t hungry, so the amount of time I spent “cooking” was the equivalent of how long it takes to heat up Campbell’s chicken noodle soup in the microwave.
I craved Nicky’s company but he said had a busy week at work and other commitments. His mother’s birthday was that week, and he was volunteering at a program for inner-city youth. I felt lonely, but I understood. And really, once the painkillers kicked in, it wasn’t like I would be great company anyway.
I saw him the following weekend and got the distinct sense that he didn’t want me there. I told myself I was being a “crazy” girl, and if he didn’t want me there, he would just tell me. He told me he was stressed out at work and tired. Again, I tried to ignore the alarm bells going off in my head.
Three days later, I went an entire day without hearing from him. My 30th birthday party was set for the following weekend and I texted to see if he had invited any of his friends yet.
“No, I haven’t gotten around to it yet.”
“You’re still coming, right?”
“If you want me there.”
“What does that mean? Of course I want you there.”
“Well we haven’t seen each other much lately…”
Was he trying to ghost me? Was he trying to get me to pick a fight with him so I would break things off with him and he wouldn’t have to do it? What the hell was going on with this guy?
I told him to stop texting me and come see me face to face. When he came in, he giggled nervously and said I looked upset, as if there was no reason he could possibly think of that would cause that to happen.
“What’s going on? Do you still want to be with me?”
Finally, he admitted that he didn’t want to be with me any longer. I told him he could leave, but he said we should talk about it first. So I asked him why, and a whole string of things came out of his mouth that made no sense.
I was perfect, and I was everything he thought he wanted…until he had it and he didn’t want it anymore. Although I had let him set the pace of our relationship, he said he felt tremendous pressure to be “perfect” for me too. He had anxiety about coming to my birthday party as my boyfriend, knowing all my friends expected him to be great. He assured me he really wasn’t. He wasn’t a good guy. He was terrible in fact, and it would be worse if we stayed together because he was going to mess up somehow in the long run and hurt me even worse than he was hurting me now. He was adamant it had nothing to do with my health issues. He was just “emotionally unavailable,” “unreliable,” and simply couldn’t be in a relationship right now. In short, he was ending a relationship over a fear of something that might not even happen.
At least that’s what I heard at the time when he dumped me two weeks after my surgery and a week before my 30th birthday party.
I’ve always been prone to periods of depression, even as a little kid. It’s how I’m biologically built. I’m especially inclined to experience depression when there’s been a major change in my life, be it starting college or beginning a new career.
The day after Nicky dumped me, I went to work anyway. I desperately wanted to take the day off and stay at home in bed with my cats, but it was only March, and I had already burned several days of PTO on my ER visit and then the surgery, and I really wanted to save some time for, you know, vacation and not #uterusproblems. Plus, I had an all-day meeting scheduled.
I was a wreck, but when I went into the office, I noticed I wasn’t the only one with a swollen, blotchy face from crying. The company had finally made the massive layoffs that they had promised back in December. I was grateful to still have my job, but I felt terrible for my friends who had lost theirs and apprehensive about all the impending work that would be added to my plate.
My antidepressants stood no chance against this unholy trinity of my compromised health, devastating breakup, and shaky career security. I was a total disaster in the days to come.
The surgery hadn’t helped me at all. In fact, it seemed my symptoms were getting worse. I was bleeding for days on end, and I experienced some amount of pain every day. My doctor told me to wait a while; my body was still healing. But while I waited, I became angry and frustrated, busy trying to rotate painkillers regularly so that I wouldn’t completely destroy my stomach lining and liver, or worse, get addicted. Most days, the pills didn’t even help anyway.
And my incisions weren’t healing. I was cleaning them regularly with hydrogen peroxide and blowdrying my belly button which felt absurd, but my doctor told me to do it. Still, they were red and swollen, and sometimes looked like they were oozing fluid. How could they be infected when I had been so diligent about keeping them clean? I felt monstrous, even after the doctor figured out that they weren’t infected after all. Rather, my body, contrary as always, was rejecting the surgical glue she had used instead of stitches.
I was in denial about Nicky. I hated waking up and remembering he wasn’t mine anymore, and I didn’t understand why he was so hard on himself when I knew how wonderful he could be. I thought if I could mend his self-esteem, he would realize I was worth taking the risk to be with me. He would still talk to me about everything — baseball, books, work, music — but if I brought up our relationship, he clammed up.
I cried myself to sleep most nights, racking my brain to figure out what hideously karmic offense I had committed to deserve such pain. I cried in my co-worker’s office at work most days. I cried in the car. I cried on the phone to my mom almost daily. I was like a character in a goddamn Nancy Meyers film.
And I was never angry at him. I wanted to be angry that he was being a coward, that he had ditched me when I needed him most. I knew I should be. My friends reminded me he wasn’t worth my time or energy. But all I felt was that I missed him.
So I threw myself into work, picking up the slack left over after the layoffs. I worked nights and weekends, and unsurprisingly burned out fast.
I felt guilty about everything. I felt bad lying to people when they asked if I was doing better. I felt bad NOT lying to people when they asked if I was doing better and the best I could say was that I was functioning. I felt bad for feeling lonely even when my family and friends unfailingly stuck by my side, keeping me well stocked with gummy bears (Haribo only) and tulips (my favorite). I felt bad for desperately wanting this man-child in my life, even though I had always been perfectly content being single before he came along. I was embarrassed by how long it was taking me to get over someone with whom I had been for such a short period of time, though my therapist hypothesized that my illness was stunting that process.
Most of all, I felt bad for constantly turning down invitations to go out. I tried when I could. I knew it would make me feel better, if just for a few hours (and I was trying everything to feel better from meditation to acupuncture). But sometimes I was in so much pain, either physically or emotionally, that I just couldn’t do it. And sometimes, I was simply too tired.
Only my closest friends knew how sick I was, and I feared that to everyone else, my common, vague refrain of “I have to bail, I’m not feeling well” was starting to sound like the classic bullshit line, “I can’t, I’m washing my hair tonight.” I worried I would stop receiving invitations to go out and do fun things.
Everything felt so hard. I was tired of being in pain, I was tired of feeling sad, I was tired of calling doctors, I was tired of working so hard and never making a dent, I was tired of feeling tired. I just wanted this “rough patch” to end. I had never been suicidal and still wasn’t, but for the first time in my life, I felt like I understood how people get to the point where they think about killing themselves, and it scared me.
During that time, I listened to a TED Radio Hour podcast during which a researcher talked about how on brain scans, heartbreak lit up the same areas of the brain that light up when you have a toothache. Recently, I heard on my favorite podcast, Call Your Girlfriend, that researchers established that menstrual cramps are akin to heart attacks in terms of pain intensity.
So if you saw me in 2015, and I didn’t seem quite like myself, it’s probably because I was the walking, talking equivalent of an abscessed tooth having a heart attack.
A few months later, I was out at a bar with friends watching one of the women’s World Cup games. Afterward, we went to another bar.
A girl who I peripherally knew of showed up, said hi to a couple of my friends, and stood in the corner watching us. I didn’t know her, but I knew she worked in the bar next door with one of Nicky’s good friends.
Something about the look on her face and the way one of my friends started acting really awkward tipped me off. Nicky had told me repeatedly over the previous weeks that he hadn’t started seeing anyone else, but a terrible feeling started growing in the pit of my stomach.
The next day my roommate confirmed it; through a mutual friend, her boyfriend and his roommate found out Nicky and the girl were dating. Not knowing what the right thing to do was, they didn’t tell me. I was humiliated and have never hated Baltimore Smalltimore as much as I did right at that moment. Everyone knew everyone, and everyone knew everyone’s business.
But the worst part was it was like being dumped all over again, and it was gut-wrenching. He had said he couldn’t be in a relationship, yet now he was, only with someone else. It killed my hope that he would come around and realize that what we had was worth facing his fears. He had taken the easy way out, and I saw him for who he really was.
After that, I read a line somewhere that stuck with me: Believe someone when they tell you who they are. I hadn’t done that. I still don’t think Nicky is the bad guy he said he was, but suddenly I stopped seeing him as some poor, misunderstood guy plagued by an easily curable case of self-doubt and clearly saw him as a scared, immature little boy who had buckled under the weight of self-induced pressure to be “perfect” when all I needed was for him to simply be there.
I struggled knowing that I finally didn’t want him anymore, but I was still in love with him. I fell into the negative thought patterns of comparing myself to her (another thing for me to feel guilty about, this time as a feminist who knows better than to compare herself to other women). What did she have that I didn’t have?
My friends assured me nothing. They said all the things that good friends are supposed to say.
But I knew the truth — at the very least, she probably had a normally functioning reproductive system. She might even be “vivacious” too.
One of the last times we talked, Nicky still maintained the breakup had nothing to do with my endometriosis.
“What kind of person would that make me?”
Clearly not a person he could live with. I believed him at first when he said it wasn’t about the medical stuff, but I don’t think he was being honest with himself. This is what he meant when he said he was unreliable, even though I knew him to be otherwise. The day in the hospital scared him. I get it, it scared me too. Only, I can’t break up with my own body.
The thing is though, life only gets harder. You never know what’s headed your way. Family members get cancer, people lose jobs, economies tank, kids bring along their own sets of issues. Hell, Donald Trump might come along and make a serious run at becoming leader of the free world.
This is not to say endometriosis isn’t hard as hell to deal with. In fact, I hope it’s the hardest thing I’ll ever face. But the reality is, there’s a very good chance it won’t be.
One day when I opened a hospital bill, I chucked it across the room in anger. With tears burning in my eyes I thought about how I now owed the hospital $3,000, and for what? I hadn’t gotten the result I was promised. In fact, all the surgery had done was apparently make my health worse, and it cost me someone I loved. And quite a few Benjamins too.
I spent so much time wondering what would have happened if I hadn’t gotten sick. What if I hadn’t had to have surgery? What if my body had functioned the way it was supposed to? What if I had been able to stay the “vivacious” girl Nicky had fallen for?
In my depressive, pain-addled brain, the answer was that we would still be together, living happily ever after.
But now with some time and distance, I realize we might have stayed together, but that wouldn’t necessarily equal happily ever after. In fact, what he said was right; he could have broken my heart much later in the game. My “what if” turned into what if I had married and had children with a man who couldn’t be a true partner to me, who wasn’t strong enough to handle whatever other tough shit life has in store for me?
As it turned out, my endometriosis had weeded out a bad egg sooner rather than later.
There was my silver lining. My silver uterine lining.
This is Part 2 in a series of essays on endometriosis, an often misunderstood and misdiagnosed disease. Like mental health issues, endometriosis widely suffers from a stigma. In sharing these personal details, I hope to contribute to raising awareness about both endometriosis and depression. If you liked what you read, please post, Tweet, and Tumbl the hell out of it, and read Part 3, Part 4, Part 5, and Part 6. If you missed Part 1, check it out!
Thank you again to my wonderful, talented friend Jen Epstein for the awesome illustrations you see with this essay (and for being my gummy bear supplier). I’d say my cats have never looked more adorable, but they outdo themselves every day.