It had a lot to do with the fact that my doctor only performs surgeries on Mondays, and my birthday happened to fall on a Monday this year.1 It also had a lot to do with the chronic pain I’d been experiencing for the past year.
Ever since the Fall Break of my sophomore year, I’d noticed a lingering discomfort in my lower left abdomen. I say discomfort because it didn’t always hurt, per se, but something always felt off. And I mean always. I noticed it when I woke up every morning. I noticed it whenever I tried to take a full, deep breath during yoga. I noticed it when I tried fasting for a day or two to make it go away. I noticed it just before my period. I noticed it during my period. I noticed it every night before I went to bed. Sometimes, it would be so uncomfortable I couldn’t fall asleep.
What was it? My initial guess was that something must have been wrong with my digestive system–I mean, what else is really on your left side? I visited a gastroenterologist during winter break, and got an x-ray and an ultrasound. They found nothing, and suggested it might be something to do with the IUD I’d recently had inserted. Off I went to the gynecologist, who looked at it through an ultrasound–it’s placement was textbook perfect. I went back to school for the spring semester without any answers, and still with the discomfort.
Over the summer, I pursued it further. I went back to the gastroenterologist, who decided to perform a endoscopy and colonoscopy to see if there was something inside my organs that wasn’t showing up in different scans.2 There wasn’t much to see, except for some inflammation in my stomach.3 He sent me home with some antacids, and I thought perhaps my troubles would be over.
As you can assume considering I ended up scheduled for surgery in December, my troubles were in fact not over. The antacids, while probably successful at clearing up my inflammation (as far as I or anyone can tell sans another colonoscopy, and I’m not desperate for another go at that), did nothing for my discomfort. Frustrated, I gave up the pills and the gastroenterology route altogether. Over Fall Break of this year, I visited my gynecologist instead.
Though he had expressed doubt that my discomfort was gynecology-related the year before, when he saw me again and heard I was still suffering, my gynecologist promised he’d do everything he could to figure out what was wrong with me. My assumption, based off a few sleepless nights’ worth of WebMD research, was endometriosis. He said that could be the case, or it could be a twisted ovary, a cyst, or any number of other things that could only be seen with one procedure: a diagnostic laparoscopy.
As you’ve probably guessed by now, the diagnostic laparoscopy is what landed me in a hospital bed the morning of my twenty-first birthday. It’s a surgical procedure during which the doctor makes a small incision in the patient’s belly button, fills your abdomen with carbon dioxide to create space, and inserts a tiny camera through the incision to take a look around. If they find anything, they make another little incision around the pubic bone and insert whatever tools they need to make what fixes they can in the moment.
I woke up from the procedure and my doctor gave me the best birthday gift I could’ve asked for: a diagnosis. After over a year of suffering and searching, I knew what I was dealing with. I have endometriosis.
Endometriosis, for those of you who do not spend their free time on WebMD trying to figure out whether they’re dying, is a condition in which the uterine lining (the stuff that grows every month to nourish any potential babies conceived and exits during a period) grows outside of the uterus. It can end up pretty much anywhere–the fallopian tubes, the bladder, etc.–and for me, it was on my peritoneum (the lining of my abdominal cavity). Since it’s not in the uterus, when it breaks down each month, it can’t leave the body the way properly located uterine lining can, so it just stays inside the body, which, as you can imagine, isn’t very good.4
The actual substance of endometriosis is tiny–in the photographs my doctor took during the procedure, they look like little gray dots that I didn’t even notice, let alone recognize as endometriosis, until my doctor explained the photos to me at my follow up appointment.5 It seems like they would be impossible to feel at all, let alone to cause the kind of discomfort I was experiencing this year (not to mention the incredibly painful periods that are the hallmark symptom for most people with the condition). However, as my doctor explained, endometriosis causes an incredible amount of inflammation to the surrounding tissue. Just about every organ of mine adjacent to the outcrop, as it were, was bright red in the photos, and many had developed adhesions as a result (which my doctor thankfully removed with a (bad-ass) laser along with the endometrial tissue).
Okay, so my doctor figured out what was wrong with me, and zapped the problem away, so I should be all set, right?
Unfortunately, that’s not the case. First of all, endometriosis is not a disease, my doctor told me, but a syndrome–something that I’ll have for the rest of my life. And secondly, like I said before, it’s tiny–so no matter how accurate my doctor was with the laser, there could be any number of infinitesimal scraps of endometrial tissue left lurking. And as long as I keep getting periods and producing hormones that tell that tissue to grow, it’ll keep bothering me.
But there is a solution–for the next few months, I’ll have a sort of forced menopause. I’ll be taking birth control pills every day that I’m abroad (so no off-days of placebo pills that would cause a period), and getting hormone injections when I’m back home. By the time I start having periods again, the endometriosis that was left behind will hopefully be “dead.” And beyond that? As my doctor told me, I should be fine–plenty of people have endometriosis and live comfortably, and many still have kids and perform other normal uterus-related activities.
So I spent my birthday in the hospital, and couldn’t have my first legal drink until at least twenty-four hours after the anesthesia wore off, but it was worth it. I finally know what was bothering me,6 and I have a clear path to ensuring it never bothers me again.
But my thoughts still linger on how difficult and prolonged the process of this discovery was. Many times, I could have stopped pursuing it, either because of the logistical challenge of balancing doctor’s appointments with attending a school nowhere near my doctors’ offices, or because of the continued lack of results from each new test. I could have resigned myself to a life of general discomfort (which had been, and would continue, to get worse if left untreated). It took my own conviction that my discomfort could be named and further that I deserved to know what was wrong with me to convince me to keep returning to the doctor. It took the support of my parents and our insurance policy to ensure that the procedures my doctors recommended actually happened. I can’t help but wonder what would happen if I had been less persistent, if I didn’t look up my symptoms and find several conditions that fit them, if I wasn’t already used to spending many days of my breaks in doctors’ offices (thanks, hypochondria), if my parents didn’t believe I had pain with no visible cause. In the case of endometriosis, leaving it undiagnosed could be disastrous–it’s untreated endometriosis that can cause infertility. Even if my condition was simply a matter of benign discomfort, the mental strain of living with it constantly would not, I imagine, have been sustainable.
All that considered, I’m incredibly grateful to all the factors that came together to allow me to identify and treat my condition. And I’ve decided to write about it, now and in the future as I get updates, so that other people can also find the kind of help they need in similar conditions. If you’re experiencing any kind of discomfort, physically or mentally, you deserve to understand it and treat it. You don’t have to resign yourself to pain because it might be inconvenient to investigate it, either to yourself or others. Further, if you’re experiencing pain or discomfort that sounds similar to what I was experiencing, don’t hesitate to reach out to me, or, preferably, a medical professional. I’d love to discuss my condition more and bring awareness to others who may share it–may we all get closer to living comfortable, pain-free lives.
1 At least I probably wasn’t going to have more exciting twenty-first birthday plans for a Monday anyway–I can’t imagine the Monday night bar scene is a lot to miss out on.
2 The preparation for those procedures is not pleasant, let me tell you. It involves a lot of laxatives, a day of fasting, and a general feeling of overall misery that should serve as pretty clear evidence of just how desperate I was for a diagnosis.
3 And my stomach, I should say, is located nowhere near the area where I was experiencing discomfort, and was likely inflamed because of colonoscopy-prep-induced nausea the day before–but I’m no doctor.
4 All of this I’ve learned from my own research and from my doctor–I can’t remember if this syndrome ever came up during my health classes in middle and high school.
5 Speaking of those photos, I thought it best not to reproduce them here. But if you’re curious, you can always reach out to me and I’d be happy to show and explain them to you (especially since it gives me the chance to show off my new, incredibly esoteric knowledge of my own abdominal cavity).
6 And, significantly, it had a physical, rather than a psycological, basis. For a while I’d convinced myself that the discomfort was in my head, and that if I could just think about it the right way, it would go away. You can imagine how frustrated I felt with myself when it didn’t.