The following is a piece I wrote in March of 2016:
After 18 years of terrible, I was finally diagnosed with endometriosis. 18 years of pretty notable misery with my monthly “gift” of a period and now, I’m having surgery. From what I’ve been told and read (from credible sources like the first page of Google results from the search “wtf is endometriosis??”), I’m going to be fine. Things should only get better now with a diagnosis and surgery. Though, I’m also not feeling like a lottery winner and sometimes view having a female reproductive system as a very effective curse from a witch I wronged as a young child. The bottom line is: I have a really good life that includes an HBOGO password, a Tempur-Pedic bed and a butt that declines to quit.
I am writing this while, coincidentally, in this moment, I am experiencing the endometriotic cramping pain that this post is largely about. What timing the universe has.
Two days ago, I posted on Facebook about it (see above.) I worded my post like comedians sometimes do when they’re announcing that something rad has happened for their careers: like getting booked to do late night on TV or an impressive writing gig. If I’m being honest, I wrote something about it at all because satirically writing about it was a way to entertain myself and deal with processing it. I naively didn’t realize the intense reactions of compassion and sympathy it would elicit. I didn’t see my diagnosis as particularly dramatic because of a combination of things: 1. I have already had several surgeries before so getting another is whatever. 2. I’ve already been through far worse things than writhing in pain 3-4 days per month.
Examples of “far worse than endometrial pain”:
- my brother dying of cancer
- watching a halfway house across the street burn down in the middle of the night
- sitting through the movie “The Gambler”
While having endometriosis isn’t ideal, it isn’t devastating to me either. Though, the more people are coming out of the woodwork telling me “this surgery is gonna terrible!” the more I’m telling people to “shut the fuck up”. And I am feeling more and more ready to start feeling as sorry for myself as others are feeling for me.
Compassion is daunting. I have to say, the outpouring of private messages, texts and calls with follow up questions about my vagina, wow. You guys really know how to make a girl feel special. My uterus wants to start a Snapchat. But very really truly though, the caring, well wishes, love and support is lovely as fuck. I even had a friend who shall remain anonymous, Jermaine Fowler, offer to help pay for my surgery. You guys all reminded me that humans can be so amazing when we remember to care for each other. Thank you.
Here are some facts, feelings, thoughts and stories about me and Endometriosis for those that might be curious:
#1: What is Endometriosis?:
Endometriosis is when endometrial tissue grows outside of your uterus. And if you’re like “what is endometrial tissue and why is it growing inside of my uterus (much less outside of it) at all?” that is a good question. Endometrial lining is menstrual blood. Before it leaks out as your period, it is first the lines the walls of your uterus in case an egg is fertilized that month so it can help the egg grows in your uterus. But if you don’t get pregnant, then the lining needs exit the body, so it comes out as what we call “yah period”. Science! So, when that same endometrial lining grows *outside* of your uterus, it causes horrific cramping and pain because (cue music) “nobody’s sp’osed ta be herrrre”. And lining growing outside of the uterus doesn’t have a way to exit your body because it’s not inside the uterus to then travel through your cervix and out of your blessed vagina out into the world and probably onto your favorite pair of jaguar panties because you thought you weren’t getting it for another couple of days.
Endometriosis is like this: imagine if the basement of your house flooded. And then eventually, if the water just sat there, it’d slowly spread, soak and seep into the foundation and structure of the house in places where there isn’t supposed to be water at all. It’d slowly break it down and ruin the house. But now imagine your house has feelings, can experience pain and maybe wants to make little houses someday. The house is suffering several days a month and taking a lot of NSAIDs. I’m not going to die and this is not cancer but I’d also like to be clear that this is a very painful disease. You might be like “some cramps? Big whoop, Maria.” It’s a terrible thing to endure. There is a wide spectrum of suffering because variety is the spice of life. It can get as bad as the fact that some women have even committed suicide over their endometrial pain. A lot of doctors didn’t even believe endometriosis existed until the mid-1990’s. Instead they often thought it was a psychosomatic manifestation of a bold lip color. Just kidding. But only about the bold lip color part. They often believed women were altogether imagining the pain because they couldn’t see it and hadn’t themselves experienced it because most doctors were men until recently in history. They would even commit these suffering women to mental hospitals because they believed the pain was a symptom of insanity and not actual pain they were enduring. LOL, right? Hahaha. Very funny, yes? Good joke, womens.
#2: How did you get Endometriosis, Maria?:
Hard to say. Doctors and researchers can’t pin down the definite cause(s) of endometriosis but it is likely influenced by genetics (at least two of my family members have it), exposure to unnecessary chemicals and hormones, anti-inflammatory issues and/or from watching dial up internet porn: all arguably unavoidable things.
#3: Who’s Your Doctor?:
My doctor, who is literally the best doctor of any kind I’ve ever had in my entire life, Dr. Amir Marashi, is an OBGYN who specializes in endometriosis. I found him on a website called zocdoc.com. While ZocDoc has its pluses and minuses, Dr. Marashi had a magic number of glowing 5-star reviews and his services did not disappoint. He does the laparoscopic surgery I’m having at the end of the month with the same frequency that I eat falafel, which is 3 times a week. So, we are both experts in our respective fields.
He thinks, but won’t really know until he gets up in them guts (literally), that I am in Stage 2 (there’s 4 stages), maybe Stage 1. So, I feel lucky because he caught it “early” (if we’re glossing over the 18 years of suffering that I’ve been through.) It’s “early” in that the pain would have only increased and potentially gotten much worse if left further undiagnosed and to a point where there’s likely no hope of being able to have kids someday. Let that sink in. It blows my mind that even when you’re sick and/or miserable that one of the big questions you have to answer is still “WHAT IF YOU WANT TO HAVE KIDS? ARE YOU HAVING KIDS?” I get that this illness is related directly to my ability to get pregnant and carry a child to term but I’m also a little tired of being thought of as a walking baby oven. I’m more than motivated enough to deal with this disease because it’s making my entire crotch region feel like a slasher nightmare a week a month. Dr. M (I’ve decided we’re at the level that I can call him that since he’s about to touch my ovaries with his hands soon) doesn’t seem concerned about my case and sounded very positive about my prognosis with surgery. My appointment with him was also great because he never once acted as though my pain was an “um, obviously, you’re a woman” situation, unlike EVERY OTHER physician and RNs I’ve ever discussed with it. Every one. Yes, also you.
All these medical professionals made me feel like I was crying over spilled milk. But it wasn’t spilled milk, it was something far more disgusting than that. Also, spilled milk doesn’t make you pass out on a camping trip in Eastern Washington.
#4: What is a laparoscopy?:
Here’s the gist: Dr. Marashi is gonna put two sticks in my belly. One is a camera to eyeball my baby-making factory and inspect everything in the area, since he’s in there anyway. The other stick is a laser to burn off the endometrial tissue build up that is causing a lot of my pain. Basically, my doctor is going to power wash my basement. This surgery won’t necessarily get rid of all my pain, but it can potentially help. After surgery, I will get back on birth control, because that can limit the cramp pain and help slow the process of endometrial build up. Also, I’ve heard that men love it when you don’t get pregnant.
#5: Do You Have Insurance?:
I have insurance. (Thank you, mom!) “You’re not paying a dime and my office will see to that,” Dr. Marashi said as he stared deeply into the the left ovary of his female reproductive model on his desk. The surgery will be covered 100%. The reason I bring this is up is to relieve any worry that I’m going to go into extreme debt to spare myself from the carnal sin of living in a woman’s body. But also, it’s always good time to highlight how fucked up our healthcare system is.
This all sounds crummy, but how about this: I have it pretty good. I am an educated woman who grew up in a middle-class home with educated parents, one of whom is a lawyer and the other a medical claims specialist. I have multiple healthcare professionals in my family. In the best possible version of this type of medical situation, I was still finding myself not diagnosed until almost 30 years old. And, if it weren’t probably libelous, I’d list out every doctor and RN I’d ever seen that didn’t help in here because if there’s anything I love, it’s a grudge. To each of you: thanks for nothing. You have bathed in the waves of the unending ocean that is the patriarchy. Get your shit together.
Now, picture some other woman also suffering from this disease, as 1 out of every 10 women in the world have it. Because it is often missed or ignored by doctors, tons of these women are not diagnosed, suffering extreme pain, and often, as a result, unable to have kids, along with other lady diseases like PCOS and PMDD. Imagine a woman with low income (this shouldn’t be hard). 14.8% of women in NY state are impoverished. Imagine this woman has endometriosis. She likely doesn’t have insurance or regularly see a doctor. She will probably never be diagnosed; even if she were, there’s zero chance that she could afford the surgery—an endometrial laparoscopy can cost anywhere from $1,700 – $5,000 without insurance.
Whether you’re my soulmate (aka every Häagen-Dazs “Chocolate Dark Chocolate” bar I’ve ever met) or my worst enemy (zucchini: your texture is gross), you should be able to go to the doctor or hospital without fear of not being able to afford it and live in your body.
#6: Why did this diagnosis take so long?:
I read an article that, overall, endometriosis is a widely ignored disease. When afflicted women complained of the horrible pelvic pain to their doctors, they were instead declared mentally unstable. That sounds hard to believe but, having brought up my insane levels of endometriatic pain to literally every doctor (including OBGYNs both male and female) I’ve ever seen from age 12 to present, it makes sense. These “doctors” and “registered nurses” regularly swatted down my complaints and concerns, saying, “oh, you just have bad cramps. It happens.”
“Take some Advil and birth control.” “Yeah, it hurts but it’s just the way it is for some women.” by so many medical professionals that I don’t think I even told a doctor after I collapsed from it in college. When each doctor you confide in about your ongoing physical misery reacts to it with some variety of “chill out” about pain so terrible that it leaves you wondering how much worse childbirth could possibly be, you start to believe them. I believe it’s called incidental gaslighting. You learn to accept that this is what life is like for you, that a uterus is just hard thing to have. And, don’t get me wrong, they definitely are, but not like this. The reason for endometriosis being so unacknowledged even in the medical community, unfortunately, seems at least partially about misogyny. The bias against women is so deep in society, it’s even baked into how women’s doctors are taught to practice medicine: how they treat us, how talk to us about our bodies and whether or not they listen to us or trust us. Because who knows a body better than the person living in it? What I’m saying is, doctors need to be trained and also learn to fucking listen when a woman tells you things hurt. We’re not lying. Trust me. We have so many better things to do. We reportedly have a 4 to 1 pain threshold comparatively to men. Thus two things are true: #1: if men got endometriosis, they would fucking die from the pain. #2: Because women can put up with a lot of pain, if we are coming to you, a doctor, to complain about it, it means it must be a lot of pain and you need to do your job and look into it. We’ve taken the expensive time to PAY YOU to talk about it. Give us the benefit of the doubt. Our pussies are funding your motherfucking salaries.
#7: How bad is the pain really?:
Glad you asked. Well, I can only speak for me as being in Stage 2. By the way, I was educated on how they assign stages and the stage increase only denotes the severity of possible infertility and not the amount of pain being endured by the woman. Oh, thank you very much, medical science daddies! A women’s suffering doesn’t rank equivalent, higher than their baby-making abilities or even FACTOR into the rating. After 17 years of it, I’ll say this:
In the thick of the misery of the heinous cramps, they come in like fluctuating aching waves. The intensity is so much that I can count out the contractions like women in labor. Every month from 1998 to right now in this minute, I’ve thought at some point during the cramps, “what if I lived in a time when pain medicine didn’t exist yet?” I would have had to just endure the insane pain 24 hours a day for four to seven days every month from age 12 to around 60 years old. And the pain is isn’t just physical. When you’re in that much pain, your mind does everything it can to exit your body, to depart from focused consciousness because the present is too unbearable to sit in. I wouldn’t be able to move around much or at all sometimes. have conversations requiring focus. I wouldn’t be able to go to work (not that I was ever dying to do that anyway though) or walk or really do anything but lie there curled in a ball for a week every month. I would be wholly miserable for ¼th of my childbearing years, stuck in bed, in miserable pain and, I’m sure, depressed. And then I stop thinking about that because why am I bumming myself out while going through that pain? I see now that I’ve gone through some true bullshit from doctors not diagnosing this over the years.
My mom had these horrible cramps too but didn’t realize until my diagnosis that she likely also had endometriosis. She had my brothers in her early twenties and childbirth relieves and sometimes helps halt the process of the disease or, at least, slow it down. I remember lying in writhing pain, sweating on the floor of the bathroom during a shift when I working at the Gap (like working retail isn’t enough suffering on its own) for over two hours because the medicine decided not to work that time. One time, I passed out next to a picnic bench while I was camping in college. Thankfully, my friends found me and some pain medication. And when I woke up from the nap of exhaustion that followed, the cops had come, raided our campsite for alcohol and booze and left. I was so tired from the experience that I slept through the whole raid. Luckily, I had been sleeping on top of my bag of weed and they didn’t find my still half-full handle of Smirnoff either, so the weekend wasn’t all bad but I digress.
When I feel the cramping start to kick in, I know it so immediately. Me and the pain, we know each other like a dog knows the faint wafting scent of nearby pungent garbage. It’ll wake me up out of a dead sleep, sometimes too late to get in front of it, so I’ll toss back medicine and then lay there praying it kicks in. I try to meditate through the aching contractions till the meds release into my bloodstream. And when they do, it feels like an underwater scene, a wave of relief with trippy music like when somebody shoots drugs in a movie. Few things feel better than going from rhythmic pain of my muscles retching in and around my groin to a soft, departed nothingness of the medicine dispersing and the sensation of the pain being gone.
When I’ve been in thick of it, sweating, writhing, it’s so acutely painful that I can’t even have long, contiguous thoughts. It is literally too painful to think. My mind is un-lassoed. I have hallucinated from it and not in the fun way. My brain feels separate from the rest of my body trying to distance itself from the mindfulness of understanding what’s going on down yonder. The only thought I consistently carry is: “how can I be literally anywhere else but in this moment?”
For whatever reason, I’ve gotten through all this pain for over half of my life by learning to endure it while missing school, work, having to cancel plans and definitely fantasizing more than once about the concept of getting my entire crotch cut out so I’d never have to feel any of this again. But, really, I’ve gotten though it mostly because I literally had no other option, not even a diagnosis. Just feeling like a drama queen every time I had to call out of work because I “got my period”. And also, credit where credit is due: because I’m hard as fuck. I’m gonna go ahead and give myself some accolades here for getting through this. It has been no treat. And a HUGE SHOUT OUT goes to Advil Liquigels. I couldn’t have done it without you. Nothing works faster and you my boo for life.
I also, apparently, have been having somewhat painful sex this whole time but didn’t realize that it wasn’t painful like that for other women. I simply didn’t know that that wasn’t what sex was supposed to feel like. I am FULLY looking forward to finding out what less painful sex is all about because I was already very much enjoying it and a pretty big fan. So, the news that it’s potentially going to get better: huge silver-lining.
#8: But what’s your point though?:
I wrote all this because so many women out there are suffering from endometriosis, PCOS, PMDD and I would guess most of them don’t even know it. They think they’re just miserable because that’s just what it’s like to be a woman. So, I wrote this because, yes, I am very self-involved but also, because I hope it sheds some light for a few ladies on taking their own pain seriously even if people with medical degrees may have waved them off. Endometriosis is something that people need to know about because the reality is that the medical world is still consistently ignoring sick women in pain. And, like, please fucking stop doing that, okay? We need to start taking care of everyone, especially poor people, who don’t even have adequate access to what turns out is still be some pretty shitty healthcare anyway. Consider this: endometriosis and getting treatment has been pretty terrible for me and I had an arguably good situation. So, now, imagine what people with less who are suffering through endometriosis are going through. Sucks, right?
Alright, everybody go get a pap smear.
Love,
Maria
Childless MILF 