What I Wish People Knew About Endometriosis During Endometriosis Awareness Month
Growing up, I was made to understand that periods were going to be uncomfortable, shameful and likely painful. I can see that this narrative is beginning to shift with increased visibility of illnesses, discourse around periods and the amazing resource-sharing side of social media, but I was wildly unprepared for the type of pain I would be enduring with my cycles as I got older. They went from relatively “normal” levels of uncomfortable to absolutely debilitating in just a few years. So, after jumping around a few doctors and explaining my situation, just a month before turning 23, I had surgery that diagnosed me with endometriosis.
Endometriosis is a complex disease that occurs when tissue similar to the lining of the uterus grows outside of the uterus. The growths are known as lesions, and although they’re typically found in the abdominal cavity around the pelvis, endometriosis lesions have been found far outside this region. The lesions act like the endometrium within the uterus, bleeding with each menstrual cycle and can even adhere organs together if they become too overgrown. The cause of the disease is unknown, and therefore, has no cure.
Emma is laying on the couch under a heat pad during a painful period in June, 2020. She had someone take the photo for her to try and document what her days lost to endometriosis look like.
I am one of the 1 in 10 people assigned a female at birth that has endometriosis. Think about the number of people in your life — that’s a lot! Unfortunately, many people suffer without knowing they have endometriosis, as it takes an average of eight years to receive a diagnosis. This is largely because we’ve been raised to believe that periods should be painful and explaining pain to anyone is difficult. “Invisible” illnesses are those that can’t easily be identified — a stranger wouldn’t look at me and think that I have a disease that disables me once a month. So, in honor of March being Endometriosis Awareness Month, I’m sharing a handful of things that I wish people knew about the disease that affects me and so many others.
It’s not just having bad periods. Endometriosis affects me beyond just the five days I typically bleed for. Anywhere from 7-10 days before my period starts, I begin feeling deep, throbbing pains in my abdomen, letting me know that my cycle is coming. I also experience sharp nerve pain in my abdomen at sporadic times throughout the month. Sometimes sex is painful, sometimes it’s not, and I’ve never really figured out when or why; this is a tough thing to explain to partners, too. A few days before my cycle starts, I start to experience cold-like symptoms. Sometimes, it’s like I have come down with a cold — congestion, fatigue, scratchy throat, all of it. My immune system just takes a dive and makes it really difficult to be productive, especially when I have the looming knowledge that my cycle is starting in just a few days and I’ll be out of commission.
Brain fog is a symptom. It often gets overlooked because there’s so much else going on, but seriously, my brain is absolutely gone as soon as my cycle starts. Stringing a sentence together is hard enough, and there have been too many times to count where I was behind the wheel of my car thinking, “I probably shouldn’t be driving in this state.” But, I have to communicate with the people around me and get myself to where I need to be regardless. While desperately asking my brain to work, I grit my teeth and get to work, get home, get to the grocery store, take care of the things I need to take care of. The thing with brain fog is there’s nothing to remedy it, so it becomes a side effect of my periods that I try to ignore as best I can.
The pain is way (way) worse than people think it is. The number of times I have heard someone ask if I’ve tried ibuprofen is unreal. six or seven ibuprofen at one time hardly makes a dent, and that’s already unsafe usage of over-the-counter pain relief. The pain is often stabbing and throbbing and permeates my entire body. It brings me to shaking tears, collapsed on the floor holding a bottle of painkillers, or sitting on top of a keg in the walk-in cooler at the restaurant where I work, trying desperately to recover myself so I can stand up straight and walk back out to my tables, under the ruse that I’m not being tortured from the inside. Walking is difficult enough, but so is literally anything that might change the position of my abdomen. This includes eating and drinking, going to the bathroom, sneezing or coughing, going from sitting to standing, carrying things... anything that might engage my abdominal muscles. Recently, a friend came over and brought me ice cream to keep me company (which was wonderful, obviously) while I was on day two of a cycle. My pain wasn’t as bad as day one, but I was still really struggling. I asked him if he wouldn’t mind scooping the ice cream for me, because I wouldn’t be able to do it. He suddenly stopped and said, “Wow… that just really put things in perspective for me.” I’ve learned to ask for help now and not be ashamed, but needing help for things like scooping ice cream can really crush my spirit some days. The most basic of tasks become the most feared because they’re the ones that hurt me mentally as well as physically.
My mental health takes a huge toll every month. Once a month (really, every 25 days), I become incapable of functioning. It messes with my head. In a society that values productivity, “hustling,” and working through illness or injury, not only does my pain get misunderstood as weakness, but I begin to take on negative beliefs about myself. That because of my pain, I’m not a productive or important member of society. That I don’t deserve good things because I need help with basic tasks sometimes, or that if I only pushed through it, I could be better. I have to do a lot of mental work every single month just to keep from falling into a depressive episode; something I already struggle with. I’ve gotten a lot better at handling this over the past few years, but it’s still hard work. I’ll be planning a trip or getting excited about literally anything coming up in the future, and then suddenly the cloud of “what if I’m on my period” hits me. I find that I feel my worst when I have to leave work or get someone to cover a shift for me. Something about being unable to show up to work gets to me more so than other things, but again, it’s just something I have to mentally work through on my own. Because I know that I can’t physically make it through, and no amount of pushing myself will change that.
Birth control and surgeries don’t always work. Trust me, I’ve had both. I got put on the pill at age 16 or 17 because my periods were painful already, and that was the first solution. I had no idea how to advocate for myself or ask questions at that age, so I stayed on it until I was 20. There were some other things happening in my life that caused me to ditch the pill at that time, but after I did, my periods quickly became worse than I had ever remembered. At 22, I had the excision surgery that diagnosed me with endometriosis (because endometriosis cannot be diagnosed any other way) and burned off the lesions growing in my abdominal cavity, then was put on an IUD. Although birth control is supposed to slow the growth of endometriosis lesions and lessen pain, the IUD just ended up making my pain worse and more frequent. I tried it for 8 months before having it taken out, and I felt almost instant relief. After the removal, I had maybe three or four months of manageable periods before the really intense pain started to creep back. It’s now been a little over two years since my surgery, I’ve been off an IUD for about a year and a half, and my pain is back to a point where I’m having to plan my life around my cycles. This means intensive cycle-tracking so that I can take off work ahead of time and know when not to make any plans. It sounds simple enough, but not a month goes by without some sort of hiccup or obligation that I have to fulfill. I can’t just drop off the face of the earth for a few days, as much as I’d like to. Now, I don’t know where to turn for help next.
Painkillers are typically the only thing that helps, but even then, I’m still burning. That type of medication sort of just makes me forget about how bad the pain is, but if I’m moving around for whatever reason (like I have to do at work), I’m still going to be in pain. Then there are the side-effects of taking opioids, like being unable to drive or think clearly. I might not be in as much pain, but it opens up another slew of problems that make it nearly impossible to function. Smoking cannabis also can help take the edge off and make the pain bearable, but then, I run into the same issue with painkillers: unable to be at work, drive my car, etc. It feels as if there’s no good solution.
Endometriosis is incredibly isolating. There are online communities and resources, and I have my friends and family to talk to, but there’s something alienating about the condition that my endometriosis pain puts me in. It feels very vulnerable to let people - even the ones who are close to me — see me in that state, and I tend to feel embarrassed when someone has to take care of me or see me that way. I’ve also had my fair share of people who don’t believe my pain, who get mad at me for it, or who think I’m just being dramatic. That has certainly put a damper on my willingness to ask for help, and is again, just something I have to work through on my own. Even when I do have help, at the end of the day, I’m alone with my pain. Curled up with a heating pad, my thoughts dull from the pain medication, I have to ride the waves, make decisions for myself, nourish myself and get through endometriosis on my own.
After all, this has been said, it should be noted that I do go to counseling regularly, and I understand that I am so lucky to be able to do this. I’m lucky to afford any of the medical treatments I’ve received for my endometriosis, and this is almost entirely due to my parents. On my own, I would have never been able to even try birth control options, much less receive a diagnosis and some temporary relief through surgery. I am incredibly privileged to be in the position I am in — getting a diagnosis within two years of experiencing severe symptoms, having access to pain medication, and being able to take a day or two off work when necessary.
Check-in with your menstruating friends. Endometriosis is a brutal disease that currently does not have a cure, and affects everyone differently. If you experience pain like this, please know that it is real and that you do have a right to live a full and inspiring life. Thank you for reading and sharing this article during Endometriosis Awareness Month!
Note: If you’ve been reading La Tonique for a few months now, you may remember this article I wrote about a TENS device that was helping with my endometriosis pain. Unfortunately, the device isn’t working for me as much as it did in the first few months I had it. It still helps me out sometimes, but not as much as it used to. If you do want to try this product, I hope it works for you!
