Elizabeth
Elizabeth, 20, Christchurch
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So I started having really painful periods when I was in high school, and I got put on the pill. And that kind of—squished everything down for a while. And then I went off the pill at seventeen because I started having painful bladder syndrome—and I had to leave my studies because of that—at the time. It was just so painful.
So yeah, I went off the pill, and then two years later, in twenty twenty-three, I started having, like, excruciating painful periods, to the point where I just, I couldn't walk. Each one gradually just got worse and worse—and worse until the point where I was like, "Okay, something is just severely wrong."
I had been talking to some doctors about my symptoms beforehand, and they all were saying, "You might be constipated." You know, just things that definitely were not going on.
And then I was like, "Right, I'm just going to refer myself." And I reached out to a gynecologist and they were like, "I think we should do a laparoscopy." I had that laparoscopy in twenty twenty-four, and they diagnosed me with stage four endo. And they reconfirmed my interstitial cystitis—painful bladder syndrome. And I was very glad to get a diagnosis—like, know what I had.
But that ended up growing back, I think, within a month or two after that surgery. And then twenty twenty-five, about four months ago, I had my second with the same surgeon, and she re-diagnosed my stage four endo. She removed it. And then I had the Mirena put in, and that kind of caused things to just go rapidly downhill after that.
So the last three months, I've been really, really struggling with sort of endometriosis pain, but it's been every sort of second day—severe period-like pain. Just not able to get out of bed. I've had to start using a cane. Just really, really, really struggling.
I'm 21 in a couple days. And I haven't been able to build up a career. I haven't really been able to study. I haven't been able to, you know, go out with my friends—like I want to—or travel. So endo is just a big, block, but we're gonna get there.
And I think something else that isn't always talked about with these conditions is how unbelievably expensive it is—to actually get the care you need. Because I'm lucky that I do have private health insurance. So a lot of things are covered, but there's also a lot of things, like, after the surgery, I was told I need to do pelvic floor physio each week for around three to four months. That's like 200 and something dollars a session.
And then you got seeing a dietician, a gastrologist. You know, there's nutritionists. There's so many things. And it's like all of these things could be beneficial, but not everybody can afford to do that. Especially when you can't work.
Which is why I think there definitely should be a program, some financial support. And I feel like endometriosis should be seen as a real disability, you know?
I think a myth that needs to die is that it's just a painful period. I know that when we, as the people suffering, explain it, we normally say it's really intense around our period—and it's exaggerated around then, but that doesn't mean it's just a period illness.
Like, you've got people that have it growing on their lungs, on their heart. It's, it's literally grown everywhere. It's been found in people's legs, everywhere. I feel like it just really needs to be a bigger thing, and more people need to realize that it is truly a full body disease.
And I think the more research that's done, the more it's starting to look almost similar to a cancer—the way it grows. But it also does destroy what it grows on. And then people are having to get, you know, organs removed because it, it is killing them.
Which is really, really hard, but people are just gonna continue to say, "It's just a period disease. Go on the pill."
I feel like a lot of us spend more time with this disease actually trying to explain or convince people that we are actually sick. I feel like I spend so much of my time, like, feeling like I have to tell my friends that constantly I'm unwell—or my partner or my family because I just want them to really believe me. And sometimes I just don't feel believed.
And it's just a thing of just feeling like you gotta convince people, and I think sometimes too, we kind of play down our symptoms because we don't want people to think we're being dramatic.
Be your biggest advocate. Be your own biggest advocate, I think. It's so important to advocate for yourself, but also do so much of your own research and learn your disease almost better than the specialist, because you are going to, unfortunately, I hate to say it, but you will be gaslit along the way. You will be told things that don't sound at all right, and it's really important also just get second opinions.
If you hear something from a gynecologist or a doctor and you think, "Hmm, I'm not too sure about that," get a second opinion.
I think there's so many younger girls now too being told, "Just get a hysterectomy." "Let's put you on menopause." And it's not okay. I've been told all of those things before I was even offered my first laparoscopy. And that was when I was 19.
I just, I think the biggest thing with battling with diseases like this is that you have to be your own biggest advocate.
