I first started experiencing symptoms associated with my endometriosis - whom I lovingly refer to as my friend Endo - when I was 20 years old.
I had just had sex with my boyfriend. I was standing in my bathroom, brushing my teeth, when all of the sudden I felt like I was being ripped apart from the inside. People often ask me what the cramps feel like. I’ve never been disemboweled, but in my mind, Endo cramps feel similar to being disemboweled.
Pain. That's the first really significant part of endometriosis. Endometriosis is super painful. With Endo, I get horrible, searing, ripping cramps both with menstruation, and with sex. And I’m extra lucky because I also have PCOS, which makes my periods irregular and unpredictable - further complicating my life living with Endo (PCOS could be the topic of a whole blog post in and of itself, if you’re curious, click the link).
How does this translate into my reality? Well, I am at risk of experiencing 10/10 level abdominal pain at any point in my life, with no ability to predict when it will strike. Brushing my teeth, standing at the front of a classroom while I’m teaching, in the middle of the night while I’m sleeping, standing in line at the post office, seeing a movie at the theater, while I’m driving...you get the point.
Like lightning, Endo will strike without mercy whenever the conditions are right, whenever she wants. I will be going about my day as usual, and suddenly Endo has me unable to stand up, breathless, tears in my eyes, crawling to somewhere, anywhere, anything that could possibly give me some measure of comfort. I will be contorted with this pain for anywhere from 20 minutes to three weeks (thanks, PCOS). I will have to find a way to go to work and function like a regular adult with the pain; let’s be real, who can afford to just call into work for three weeks because of a pain condition most people have no idea exists?
But that’s not all folx. Completely detached from my menstrual cycle (as if it matters for me anyway, thanks PCOS), I also have extreme pain during penetrative sex. After almost ten years of living with it, I have figured out which positions are better than others; but all penetration has the potential to be painful. “Painful sex” here refers to the feeling of being repeatedly punched in the stomach by that redhead MMA fighter people tell my partner he looks like. But like, through my vagina. Repeatedly, with the rhythm of the sex we’re having. It’s super fun being “that girl” who will potentially burst out crying during sex. Or who will have to stop halfway through because she just can’t anymore. Or who will be too embarrassed, too frustrated with herself, too sick of dealing with it to speak up, so she’ll just grit her teeth through it.
Additionally, pain isn’t the only symptom of endometriosis. Just like with everything, not everyone has all the symptoms. Once again though, I’m lucky because I do! Below you will find a screenshot from the same Mayo Clinic page linked above with a list of the chronic symptoms of endometriosis:
I will spare you from the gross details of how each of these symptoms have impacted my life. But if you read through them and remember how these can occur to me whenever, wherever, and for however long, you could probably imagine those details yourself.
Now, at this point you may have noticed that living with endometriosis seems pretty intolerable, let alone scary. That morning when I was 20, my boyfriend ended up taking me to the emergency room. After which I spent months in and out of doctor’s offices, getting tests done, and having to fight for my voice to be heard. You see, the only way to diagnose endometriosis is through surgery. Therefore, Endo is what people often refer to as an “invisible disease.” Meaning that, it is very common for medical professionals to misdiagnose, ignore, underestimate, or straight up not believe the symptoms you’re describing. After 3-4 years of trial and error medical adventures, I decided to finally elect to have the diagnostic surgery so I wouldn’t have to feel like a science experiment anymore. I felt as though being officially diagnosed would help me take back control over my body, my pain, my life.
It didn’t. The only ways doctors seem to know how to manage endometriosis is birth control or a hysterectomy. It’s been 9 years. After changing doctors and offices numerous times I got so sick of hearing I’m “too young to really know whether or not I’ll want kids,” that I’ve stopped asking for a hysterectomy altogether.
I’ve also tried at least ten different types of birth control (I honestly lost count), all of which had really serious impacts on the rest of my health. Each birth control has a different combination of hormones with varying levels. This means each type of birth control has its own set of symptoms with their own varying degree of intensity depending on how it works in congress with your body chemistry. As I’ve cycled through an endless stream of birth control options over the years I have: gained weight, lost weight, grown boobs, lost boobs, put myself at serious risk of life-threatening blood clots, gotten acne, cured my acne, got acne again, lost hair in clumps (that thankfully grew back after switching BC again), had fainting spells, experienced intense mood swings, coped with migraines, and missed out on a whole lot of life.
At this point, I hope you are able to infer the impact this journey has had on my mental health. As an open anxiety and depression sufferer, endometriosis has had just as extreme of an impact on my mental health as any other trauma I’ve suffered. And, with a healthcare system run by the pharmaceutical industry, I have had to figure out ways to cope with and manage this pain on my own. I refuse to take any more opioid prescriptions from the numerous doctors I’ve gone to, all of whom (even the specialists) seem to be at a loss for how else to help.
So, where am I now? Well, I currently have the Mirena IUD. This is a device that gets implanted inside my uterus and replaced every five years. Mirena has improved my life by about 60% because it shuts down my menstrual cycle for the most part. It still isn’t perfect because my uterus is still in my body. My PCOS still makes my cycle weird and my period can break through the power of the Mirena and fuck me up with all the symptoms every now and then. I also still have routinely painful penetrative sex.
But still, a life that is 40% shit is way better than a life that is 100% shit, so my journey to “fix” this thing inside of me for the most part has ceased. My medical journey for answers to my endometriosis became almost a full time job, and I just needed to move on with my life. After I turn 30, I’m considering opening the question of a hysterectomy again… Maybe being older will help convince medical professionals that I know what is best for my body?
As of now, I am on my couch with a hot water bottle on my abdomen. My cats and dog seem to always be able to sense when Endo has come to visit, so they’re all within touching distance as I write this. The nausea made it impossible to eat dinner last night so my stomach is growling, but I know any attempt to eat breakfast will be likewise futile; although my partner will make me try anyway.
At least I'm still working from home, so I don’t have to call off this time.