One in ten women have endometriosis. It takes an average of 8 – 10 years to be diagnosed if you’re a white woman – longer for BIPOC. It took me 17 years of symptoms and more than 10 years of actively pursuing a diagnosis before I was finally diagnosed with endometriosis December 2019.
Every single year at my OBGYN appointments, I told the doctors how every single month I had 1-2 days where I couldn’t get out of bed and 4-6 days of constant pain. I told them that ibuprofen didn’t relieve it. I showed them photos of the burns on abdomen from desperately seeking some heat relief. I told them how I had to change a super-plus sized tampon every 1-2 hours and sometimes I just sat in the shower while blood poured out of me. I told them how I would experience waves of pain so severe that I could only curl up into the fetal position and try to remember to stop holding my breath. I told them how many sheets and how many pairs of pants I’ve ruined. I told them how the chunks of menstrual blood were sometimes as large as a dime. I told them how menstrual blood starting coming out of my asshole. I showed them photos of how bloated I become and how it looks like I’m 4 months pregnant. I told them how the pain was constant, how it felt like fists were inside my abdomen, twisting the muscles into small, hard knots, pulling and straining my lower back and extending down the back of my legs. I told them how I bled when I ovulated and how it felt like I was repeatedly being stabbed by a burning knife. I told them how the pain was incomparable to any other pain I’d experienced – worse than the pain of norovirus making you explode from both ends at the same time, worse than the pain of walking around with a chunk of my tibia floating inside my ankle, worse than the kind of migraine that leaves you unable to be exposed to any light or sound – worse than anything else I could imagine. I told them the same things over and over for 17 years. They didn’t believe me.
They told me it would get better when I got older – lighter, more regular, less painful. They told me birth control pills would fix the pain and heaviness. They told me an IUD would stop me from having periods. They told me yoga would the pain. They told me my periods would be lighter, more regular and less painful if I lost 15 pounds. They told me diagnosis endometriosis doesn’t matter because there is no cure. They told me I would have pain relief immediately after surgery. They told me I didn’t need opioids after surgery, even though I couldn’t sit up due to pain for two weeks. They told me taking the pill will prevent it from coming back. They told me the side effects I experienced weren’t real. They told me if I won’t take the pill, they won’t treat me. They told me pelvic floor therapy helps some people, but I can’t do it unless I take the pill first and that doesn’t work. They told me it will come back and I’ll need surgery every two years. They told me to get a hysterectomy. They told me my endometriosis symptoms are not related to my ME/CFS symptoms and that they don’t make each other flare.
They told me a lot of lies and fed me a lot of bullshit. And I believed them for 17 years. I still wonder if they’re right and if I should believe them, even though that would mean I was wrong and I’ve never been wrong before when it comes to my symptoms. I believe me.
I believe myself, but it’s nearly impossible to believe what this period feels like. I can’t believe this is what it’s supposed to feel like. I’m on day five and it’s honestly miraculous. I had no fucking clue that this is what periods could feel like.
I’m so happy and relieved to feel this way during my period. But I’m also really pissed off. I’m mad that this is what normal feels like. I’m angry that they thought so little of me, that they thought I couldn’t handle this. This is nothing. This is pleasant. This kind of pain is a friendly reminder that yeah, I’m in pain, but it’s so refreshing that it’s not PAIN. Like when you eat a chocolate-covered pretzel or other salty-sweet snack. The saltiness is a bit shocking and a bit uncomfortable, but it makes the sweet chocolate even more enjoyable. And I’m infuriated that I’ve been forced to deal with so much pain, that I now see slight pain as a fucking treasure. This pain is amusing. No level of pain should be amusing, but that’s how much I’ve numbed myself to this pain.
I have been masking and burying my pain so long, that I am pleasantly surprised and amused when I check in with my body and I’m not met with a massive lump of pain. It’s like I left my dog alone in the dining room with a plate of steak and I come back in and he’s sitting next to the table and the steak is untouched. I totally expected him to eat the steak, but I’m glad he’s just staring at it! I totally expect my abdomen to be twisted into tight knots while being stabbed through with blades of fire, but it’s just a little uncomfortable!
The sad part is, I’m amused by this pain because I know it won’t last. This is the exception, not the rule. There is no cure for endometriosis and the scar tissue will return. The excruciating pain will return. I have this moment now and I know it won’t last.
I’m angry that so many women’s experiences have been invalidated in this same way. Just as these tolerable cramps were unfathomable to me because I never experienced them before, my typical level of pain is unfathomable to my doctors. Pain is subjective, but doctors should be encouraging patients to reframe our pain in a way that helps them understand the severity and to believe us when we do. We shouldn’t have to run down a list of past traumas for doctors to listen to our pain, but apparently a 9/10 makes them think that I’m rating the level 1 of gas pain the same as a level 9 of my internal organs fusing together with scar tissue. My level 9 organ fusing is worse than my level 7 bone fragment floating in ankle is worse than my level 6 migraine is worse than my level 4 sprained wrist is worse than my level 0.2 current period pain. Does that paint the picture for you doctor? More so than just believing me when I told you my bursting cysts and scarred down fallopian tube is a 9?
I’m mad that I had to be a thin, white, cis woman in order to finally be taken seriously when I reported my symptoms. I’m mad because I experienced the doubt due to my weight and I recognize how I’m centering this on me, but I shouldn’t have to battle fatphobia to receive treatment. Black women shouldn’t have to battle racism to receive treatment. Men who menstruate shouldn’t have to battle transphobia to receive treatment. The list goes on. “This isn’t just a thin, cis white woman’s disease!” The thin, cis white woman screams into the void.
It’s so stupid that I have all of this privilege and still felt scared to talk about these issues for 17 years. I’m not scared anymore. I don’t want to hide my experiences anymore. I’m not brave, I’m just tired of feeling like I should be hiding. I’m tired of pretending that periods don’t exist and that periods aren’t extremely terrible for a lot of people.
I sick of hiding how uncomfortable I am physically, because it makes other people (men) uncomfortable. I don’t feel like hiding my bloated belly under baggy t-shirts and covering my laparascopy scars with high-waisted leggings and high-waisted bikini bottoms. I’m tired of hiding the reality of what it’s like to live in this body.
I think it’s cute when I see rail-thin women sharing photos of their bloated endo belly, so why don’t I think it’s cute when I see my own bloated endo belly? It’s cute, dammit! I think if I can practice being ok with the way my endo body looks, I can learn to be ok with the way it feels. That’s probably not true, but I’m using these examples. as tools to practice acceptance.
I recognize the beauty of these pain-free moments, while also recognizing that nothing is permanent. Pain isn’t permanent and neither is pain-relief. This is how I practice acceptance. And I hope I’ll be better at acceptance when this disease returns to ravage my internal organs, but if I’m this angry when I feel good, I don’t think that’s likely.
My anger is justified and valid. My grief is justified and valid. My newfound love for my body is justified and valid. My fear that I’ll be met with skepticism and scorn is valid. My desire to talk about it with people who understand is justified and valid. I’m talking about my endobody because I want to hear you talk about yours and see you write about yours. I’m talking about my strange mix of emotions because I want to hear you talk about yours and see you write about yours. I want to know I’m not alone, so I’m telling you you’re not alone.
So here it is. A list of the symptoms I hate the most. A list of the lies I was told. I list of the ways I’ve been gaslit and ignored. Here’s my bloated belly. Here’s my little scars. Here’s my bruises. Here’s my thinx underwear that can now get me through a whole day! Here’s my pain and my joy. Here’s my endobody and here’s me.