The Endo the World Survival Guide
Life Lessons I Learned from My Angry Uterus
When I wrote this series in my head (mostly in the shower, where all good ideas happen), I envisioned this last piece as some helpful ideas on how to best cope with endometriosis — a quick-start guide, if you will. A listicle maybe, because who in the age of BuzzFeed doesn’t love a good listicle?
As I’ve thought about it and what would go in it, I realized that my tips and tricks aren’t specific to endometriosis. They can be applied to most difficult situations. Like the stories I’ve told these last few weeks, they’re about bigger issues — American healthcare, body image, sexism, self-esteem, relationships, getting a LifeProof case for your iPhone — survival, really.
Before I get started though, a disclaimer: I’m certified in approximately nothing. I’m not a therapist, a life coach, a teacher, or a doctor. Shit, I’m not even really an optimist. So take my advice for what it’s worth.
All I really have to offer is my own experience. Since the day I went to the ER in January of 2015, I’ve been through: countless tests and sometimes humiliating exams full of poking and prodding; viciously painful menstruation that essentially lasted seven months; a traumatic breakup and ensuing heartache and depression; an unending stream of bills, phone calls, and conversations of the medical variety; leaving a job and starting a new one; massive, unhealthy weight loss; and two shots of menopause, one for each butt cheek!
But since that first Lupron injection, my hateful, eternal period eventually ended, giving my body a rest.* I met a new guy; it didn’t work out for us, but he healed my heart after Nicky broke it, and I’ll always be grateful to him for that. I’ve run two half marathons, proving to myself that no matter what I am going through, I am tough as hell and capable of achieving anything I want. And I wrote this series, which put me in touch with some stellar people, both old and new.
So with all that said, allow me to drop some wisdom on ya.
Listen to your body.
Pain is your body’s way of telling you something is wrong. Yes, there are times when you can ignore it (paper cuts and stubbed toes), but other times, playing through the pain is unnecessary at best, detrimental at worst. There’s simply no good reason to tough it out.
If you think you have endometriosis, you owe it to yourself to get that mess under control stat. You can’t get a definitive diagnosis of endometriosis without surgery, but just because no one can see it without cutting into you, doesn’t mean you don’t have it. Do periods suck? Hell yeah. But if you know deep down that something just isn’t right, don’t let anyone tell you it’s all normal period pain, irritable bowel syndrome, cysts, or — gasp — all in your head. You won’t feel better until you get an accurate diagnosis and proper treatment.
Get to know your body. Several weeks after having laparoscopic surgery to excise the endometriosis implants, I was still having excruciating pain and abnormal bleeding. My doctor kept telling me to give it time; I needed to heal. I started keeping a log of my symptoms every day — flow, pain, headaches, mood — I learned a lot about my body this way. And when my doctor saw the log, this is what ultimately led her to forego the “watchful waiting” bullshit and spurred her into action.
Doctors don’t know everything there is to know.
Like any other industry, healthcare does not have a 100 percent “awesome” rating across the board. Some doctors are wonderful, and some flat out suck. Not a single doctor knows everything there is to know, and no doctor is immune from error. And when it comes to endometriosis, the truth is, most doctors don’t know a damn thing about it because compared to many other diseases, it’s not very well researched or understood.
Advocating for yourself when you’re sick is no small feat. When you don’t know everything there is to know about medicine (and most of us don’t), it can be intimidating to present your theories to your doctor. And for women especially, it’s difficult to accept a situation in which someone might not like us. Consciously and unconsciously, society has ingrained in us the compulsion to go out of our way to be polite and not a nuisance.
An awesome reader sent me a video that a doctor posted about “difficult” patients — patients who demand their doctors’ time, who don’t accept everything their doctors say at face value. The doctor in the video concludes that although he once dreaded seeing these patients, he realized they pushed him to be a better doctor, to step up and do his best. The healthcare system needs more doctors like him — and more patients who aren’t afraid to speak up.
Screw being liked. Who cares if your doctor doesn’t like you? You’re not shelling out that chedda so that your doctor LIKES you. You already have friends, and you’re (probably) not paying them to like you. You’re paying your insurance and medical bills to make sure you’re treated properly — and a huge part of good medical treatment involves your doctor listening to you, not writing you off.
Surround yourself with good people.
The tough things in life have a way of showing you who is worthwhile and who isn’t. It’s incredibly disappointing and heartbreaking to find out that you can’t rely on someone you once thought you could. But the flip side is that these garbage monsters are showing you exactly where they belong — out of your life entirely with the rest of the people who just can’t hang.
I’ll reiterate what I said in “He’s Just Not That Into Your Endometriosis” — life is full of obstacles, and it doesn’t ever get easier. Endometriosis is hard, but I want people by my side who can support me when things get even harder. And I know who those people are now.
My words are inadequate to explain how grateful I am for my amazing family and friends, but I am. My mom is a rock for listening to me uncontrollably cry on the phone every night even though I knew it was breaking her heart. My dad is the sweetest for texting me every morning to ask how I was feeling. My friends are the raddest for not giving up on me when I was being a hermit, for making me laugh when I really needed to, for letting me know they were just there, even if there wasn’t anything they could do to help beyond sending me some videos of cats on YouTube.
When you’re dealing with chronic, unmanaged pain, these are the types of people you want on your squad.
Forget about trying to feel good; focus on doing good instead.
It’s really easy to become consumed with how crappy you feel. Last spring, I felt like everything in my world crumbled at once. My health was in shambles, a guy I loved abandoned me, and my job security was shaky at best. Conventional wisdom holds that you can somehow trick yourself into being happy; it’s something you can control with the right self-talk and ways of thinking. To an extent, that’s true — it’s healthy to break out of negative patterns of thought. Sometimes you can totally fake it ’til you make it and tell yourself you’re awesome when you don’t feel like you are at all (I do this a lot). But sometimes it’s just really hard to feel good, and if your mind is consumed with pain, it’s pretty much impossible. And then you start to think, “What is wrong with me? Why can’t I just get over this?” Soon, you feel even worse for not having the mental strength to plow through it.
At some point, I came across this great tidbit of advice — instead of focusing on feeling better, just focus on being better. One way to do this is to pick up a new hobby. Against all logic, I got into running. Or you can volunteer. My best friend Carly suggested this when I was starting to feel physically better but needed to get out of an emotional rut. I don’t know that I believe in karma as something that comes back around in the form of lottery winnings or a metaphorical bite in the ass, but I do believe that you immediately feel good when you do good. And isn’t that karmic in a way?
And it doesn’t even need to be so lofty. The idea is that by focusing on doing your best at something, you are distracting yourself from your current pain and misery. When I was at my worst for the first half of the year, there was no way I was running half marathons or adding volunteering into my 60-hour work week. Instead, I focused on getting through the day as best I could. Some days were more successful than others. I have and will always try to be the best family member, friend, and worker that I can be. But it’s also perfectly acceptable and even healthy to be the best relax-er you can be and focus all your energy on taking care of yourself. Looking back, I wished I had more often made my goal of the day becoming really good at being kind to myself. On that note…
Instead of being hard on yourself, treat yourself like gold.
If one of my friends was suffering the way I was suffering, I would have NEVER said the things to him or her that I said to myself. I fixated on how weak I was for crying all the time. I felt guilty for not being able to honestly tell my friends and family that I felt better when they asked. I was angry at myself for not pushing harder to go out and see my friends more. And I especially hated myself for having such a hard time getting over Nicky when I knew he wasn’t worth it.
But I was crying. I still felt sick. I didn’t want to go out. And I was still heartbroken. Telling myself that I should be any other way didn’t serve any purpose but to make me feel worse. While I’m at it, a sidebar: if anyone, ANYONE, tells you you should feel differently than you do — about your health, about your relationships, about what you do to feel better, about yourself — they can go the way of the other garbage monsters and peace right on out. Women are policed enough about everything from how they dress to whom they date; the last thing we need is to also be told how to feel. Along similar lines…
Forget being thankful.
I know, I know. OK, just hear me out — you know how all these “inspirational” quotes you see plastered over a photoshopped sunset on Instagram tell you all you need to be happy in life is to be grateful for what you have and not focus on anything else? That’s true in some situations, but in other situations, it’s complete and utter bullshit.
Sure, I should be thankful for the boots I have instead of lusting after the $400 ones I can’t afford. That makes sense. But it’s incredibly hard to get in touch with gratitude when impaired physical and mental health has become all-consuming. I spent so much time so angry that I don’t have a properly functioning reproductive system despite doing everything I could to take care of my body. And in those times, I tried to focus on how thankful I am for my strong muscles and my stomach of steel that’s been spared the lactose/gluten/sugar/alcohol/everything intolerances that my friends face. But when I was doubled over with crippling abdominal pain, I wasn’t exactly up to working out or eating, and that made it difficult to be thankful for my working parts, which in turn snowballed into guilt and more self-loathing.
I don’t recommend a pity party daily. And it’s true that someone out there has it worse than you. It’s great to have that bit of perspective, but first-world problems are still problems, and forcing yourself to be happy or thankful when you just can’t get in touch with those feelings is simply counterproductive. Have your feelings with a glass of wine and some chocolate (or waffle fries), and call it a day.
Talk to somebody.
I am a firm believer that everyone can benefit from therapy. You don’t need to be “crazy.” It’s invaluable to have an objective, trained professional help you unravel those negative thought patterns I mentioned previously. You’d have to be a supernaturally self-aware person to do that on your own, especially if you’re trying to do it with a brain that’s at the mercy of chronic pain.
I’ve heard all the excuses — from my own mouth — for years. “The only therapy I need is the gym.” “Why hire someone when I can talk to my friends?” “I don’t have the money.” “I don’t have the time.” “There’s no way a stranger could possibly help me.”
I don’t want to get all preachy here, so I’ll just briefly say that I wished I had gone sooner. If you’re dealing with something difficult like endometriosis, if you’re depressed, or if you’re just a stressed-out mess all the time, know that you don’t have to feel that way.
Talk to many somebodies.
And by this I mean start talking about your uterus all the time. I’m serious. Look, obviously there are places where it’s inappropriate (though I suppose if Donald Trump can make implications about the size of his penis during a nationally televised debate, then anywhere in 2016 America is fair game for period talk). But I wished I had talked about it more because maybe I would have figured out sooner that I wasn’t the only one dealing with the things I’ve written about over the past several weeks.
Since publishing these essays, so many women have reached out to tell me how much it means to them to see that they aren’t the only ones whose doctors haven’t listened, whose significant others have abandoned them, whose pain has made everyday work seem like an insurmountable task. So many men have reached out to me to tell me they’ve learned so much and now understand some of what women deal with so much better. This has shown me that it’s way past time for all of us to get over the stigma around period chat.
I get angry about the fact that there’s been a freaking BONER drug available for years. Like God forbid a dude not be able to get laid, but millions of women worldwide are in unbearable pain, and we’re all just like ¯\_(ツ)_/¯.
But knowing that more and more every day people learn about what endometriosis is, that there are PLENTY of dudes out there who can hear the word “period” and manage to not squeamishly scrunch up their delicate little noses, gives me hope that we’re on our way to better days and perhaps even a cure.
Do your research — with a critical eye.
Oddly enough, it appears I didn’t dig too deep when I was really sick. “Difficult” patient that I am, I’m usually on WebMD trying to diagnose everyone and their brother. But everything I seemed to find on endometriosis was clinical — things I already knew. If I had dug just a little deeper, I would have found hundreds of anecdotes like mine and a group of super supportive women.
I may have found Abby Norman, editor of #AskMeAboutMyUterus. I may have found Padma Lakshmi’s Endometriosis Foundation of America. I may have found the Endo Warriors, who are doing amazing work spreading knowledge about the disease.
That said, be careful where you look. We all know not to believe everything you read on the internet. Because it is still a mystery to many, there are lots of myths and misunderstandings out there. There’s a solid chance I’ve spread misinformation myself; for instance, I just learned this week that the tissue that grows outside of the uterus, while very similar to endometrial tissue, is not exactly the same, like I had previously stated. The EFA and Endo Warriors are credible places to start, and if you’re looking for more personal stories, #AskMeAboutMyUterus should be your go-to.
And finally — remember that all shitty things must come to an end.
Well, this isn’t really the saying, is it? But I’d rather focus on bad things ending than good things ending. Of course, by definition, chronic and incurable diseases don’t exactly ever come to an end. Still, take comfort in the fact that every little bit does help — every acupuncture session, every doctor’s appointment, every chat with a friend — even when it feels like you’re getting nowhere and not even making a dent.
Like everything in life, there will be ups and downs. No rough patch lasts forever. Hopefully your rough patch doesn’t encompass a full year like mine did. But if it does, just know that after every 2015 comes a 2016.
Your blood sister,
*My period has yet to return, so my reproductive health is basically still TBD status. But you know, it’s not like I’m really in a hurry to start clipping tampon coupons again.
Oh man, this is Part 6 in my series of essays on endometriosis — the final installment! Lots of sappy thank yous, comin’ in hot: THANK YOU for reading these and sharing them! Thank you for reaching out to me and telling me what they’ve meant to you — if you’re an old friend, a new friend, a girl, a guy, a total stranger, someone with endo, someone who doesn’t have endo, someone who hadn’t ever heard of endo — all your messages have made me see that everything I went through was for a reason and that’s an indescribable feeling (no really, any words to explain how I feel are just subpar). Thank you Abby Norman and the Endo Warriors for finding my writing and sharing it, and thank you for the baller work you’ve done spreading awareness. I am in awe of you ladies; you’re my sheros. Thank you to Carly and Jen, my unofficial editorial advisory board, for letting me know when my silly jokes made you LOL and when they fell flat. Thanks x 2 to Jen Epstein for your amazing artwork; who would have thought when we were coloring together in your basement in elementary school that you’d someday be drawing tampons for me on the interwebz?
Biggest thanks EVER to everyone who supported me through my shittiest year to date, especially — my parents and brother, Carly, Jen, Rhi, Ryan, Emily, Steph, Sabulous, Claire, Amy, Kathy, Beatrice, Jayne, Hyeon-Jin, Aubrey, and FWIP chat. SO corny, but you all went above and beyond in ways you might not even know, and you have a special place in my heart.
If you haven’t already read them, Part 1 is here, Part 2 is here, Part 3 is here, Part 4 is here, and Part 5 is here. WHEW. Oh, and if you like my writing, Jen and I co-write and curate the travel/humor blog, Hashtag Jetlag, and we’d love to have you visit.
And just one more thing! Since so many people have reached out to me to tell me your stories, I created an e-mail account for you to continue doing so. I promise to be there to listen, let you vent, and share what measly tidbits of help I can. E-mail me at firstname.lastname@example.org.