I always had UTIs when I was younger. Started having sex in my teens, and then had really bad UTIs constantly. And of course they’re just like, “Well, it’s ’cause you’re having sex.” Or, “You’re wearing thong underwear.” It was like, “Okay, but a lot of other people wear thongs too.” And it was only, like, I think two years ago that I found out that recurrent UTIs can be part of endometriosis, and so I was working with a pelvic floor, physical therapist, and she was like, “I bet that’s what your UTIs were. That was probably endo. It was just like that was your early symptom.”
I had an abortion in 2016, and then my periods started getting really bad. I remember one time you were over and we were baking. And I was just, like, pooping every 10 minutes ’cause I was cramping so bad. I was laying on the couch, I was like, “I’m sorry, Mary, like I can’t do this.” And yeah, you know, taking ibuprofen and nothing helps, or you take it and you’re just waiting for it to kick in. All the nausea, all the everything. And I always felt like I was having to tell people “Hey, I can’t come to this thing ’cause I’m on my period. I think I might have endometriosis,” or, “I have a really painful period.” Having to justify to people why that was a legitimate reason — I mean, honestly, just being on your period is reason enough to just lay down and not do anything. But always having to justify it.
I was married to this man who was the most productive — I mean, I don’t really believe in productivity as a concept, but constantly doing things, and had a really hard time understanding why I needed to rest, and didn’t like that. And so it was a lot of internal things happening to…get to the point where I was like, “I think something’s wrong. I think this isn’t going well.”
I had this amazing female gynecologist, [a] woman, who was like, “I think something’s wrong. Let’s do ultrasounds. Let’s do an MRI.” They saw a cyst. They were pretty sure that was an endometrioma. I had surgery. It was confirmed. And then they put an IUD in, because I was like, “Great, I’ll be under. You can just put it in,” ’cause I’ve had an IUD put in before. So fucking painful. And I had two-week periods for like four months, cramps every single day. So I finally got it out, and my surgeon took it out. My surgeon was actually more supportive. She was like, “Doesn’t seem like it’s working for you.” My gynecologist, when I went back to her, she’s like, “I’m really disappointed that you’re getting it out.” And I was like “oh, I’m really disappointed that it didn’t work.”
I was having a two-week period… like, I was just bleeding [for] two weeks every- other two weeks. I had cramps every day. I was having to take ibuprofen every day. And that’s when she was like, “Well, do you wanna have kids?” Which I don’t. And she was like, “Because, you know, getting pregnant can really help.” And I was like, “For the 10 months you’re pregnant or, like, forever?” Because, sure, if you don’t have your period and you have period pain…And so, that was like the last appointment we had. I was like, “You were amazing. You got me this diagnosis. You were the first person who really, like, pushed things through, and then you just fucking failed yourself, and failed me.”
I’ve really gone the natural route too, ’cause I feel like those are the only providers — my acupuncturist, my naturopath — who really listen and who are just so much more validating. I was just at my acupuncturist’s a few weeks ago, and I was like, “I went on this hormonal birth control, and I’m having this crazy pain flare.” And she was like, “Weirder things have happened. That could totally be it.” I was like, “Thanks for saying.” That’s all you had to say. Like, I don’t care if there’s not the data to support that that’s not a common symptom, but just telling me that…”You know your body really well. You’re really in tune,” instead of being like, “Oh, you’re so sensitive.” I was like, “Wow, thanks for saying that.”
I wrote about [how] I wish people knew how damaging it is to have the worst pain of your life dismissed over and over by the people whose job it is allegedly to protect you. And I’m so curious. This thought hadn’t really occurred to me until just today, but, like, what do they gain by dismissing people’s pain? I don’t really understand that, ’cause it’s not like I’m shopping for opioids or something…I just don’t understand, like, why. Do they feel better about [themselves]- I don’t get it.
And I feel like I’ve said over and over to doctors, “if you said, ‘I’m sorry, we don’t have the research to support that,’” and that’s kinda bullshit, I would respect them so much more than being like, “Well, you can go on hormonal birth control, you can get a hysterectomy, or you can deal with this debilitating [conditions]”…those aren’t options. Those are not real choices. Or like, “This is beyond my scope. Let’s find you a specialist who you can go talk to about this.” That’d be fine. I wouldn’t be like, “Oh, this doctor’s an idiot. I’d be like, “Oh, great. They know, they know when to say I don’t know.”
So over Christmas, I had a ruptured cyst, and I had to go to the ER in the ambulance. And my mom was there, and I kept asking her afterward, “Was it bad enough to, to call 911? And she was like, “Honey, I found you, like, naked on the toilet pooping,” over and over because I was just cramping so hard. I said “just leave me here…I don’t need to go. Just leave me here.” And she was like, “We’re not fucking leaving you here….you’re gonna put clothes on. We’re going to the emergency room.”
And my last line I wrote here was, “Just let me die here so I don’t inconvenience anyone.” That’s just kind of what it feels like sometimes, where you’re like, I don’t wanna deal with you dismissing me. I just wanna be here in my pain and be okay with it, or not okay with it. I’d rather be validating myself than be around somebody who’s gonna invalidate me.
They [were] like, oh, “Do you have food poisoning? Did you eat anything bad?” I was like, “This is not fucking food poisoning.” Like, I… Trust me, it’s not. So that was a really interesting Christmas. And then I called Mary and told her she was gonna be my emergency contact.
[Mary] ‘Cause I also experienced a cyst rupture, and it is the worst pain I’ve ever had in my life.
It’s truly the worst pain I’ve ever had. I’d had one before, and that was the worst pain, and then this one was, like, exponentially worse than that. And then when they do the scan and they tell you that’s what it is, they’re like, “Well, yeah, you had a ruptured cyst. Yeah, those can be painful.” And I’m like…. yeah, understatement of the year.