Tae
Tae (Ngāti Porou), 32, New Plymouth
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It's, it's a hard one because I never knew what endo was. And so for me growing up, my period pain was always painful. And the status quo of it's just a bad period.
So yeah, for me it just wasn't like a, "You have endo. These are your symptoms." I never knew until I was 18. A colleague kind of just said to me, like, "This isn't normal. You need to be seen." And from that point, I was rushed to emergency surgery, and then woke up and was kind of like, "You have endo." And that was it. That was all I got.
I had no information. There wasn't, "This is what endo's doing to your body. This is how it affects your body." And I just kind of went along with life, and I didn't know to change it. There was no guidance on inflammation or anything.
So I just carried on and I just went through surgery after surgery after surgery. It's kinda like there wasn't a big, I had a delayed diagnosis or doctors weren't listening. It was, mine was more of like, hang on, what's actually happening? And it isn't until you start getting later on in the journey, that's where you start realizing what it really does to your body. And yeah, the impact it really has.
Until my 30th birthday, it was kind of the reality of you may never have kids. And that's when I really knew it affected me. And that was where I felt like I'd kind of been let down. Because if I knew way back at, I could have had a better chance then and maybe done something or prepared myself or got my eggs frozen or anything along those lines.
Basically I woke up again from an emergency surgery, as I kinda came out of surgery they just kinda looked at me and said, "You may never have kids." And like it was... Sorry, trying to hold back tears. It was quite a hard, a thing to process.
Um, and I was like, "What do you mean?" I just came in for surgery. You cleared it out. What do you mean?
All they could say to me was, "We couldn't get it all."
"We can't remove it properly, and you really need to be seen by someone else." And that's where we went into Hamilton, who rather than just laser it, actually cut it out of the muscle.
Oh, so they were doing ablation before.
Yeah. And that's all I've had. So every two years I was back in there.
The last one, they were like, "We've done the best we can." It was still on my bowel. And they were like, "We don't want to risk going there." Which I was like, "Okay," but the other part of me is like, "Just do it." Like, I don't want to live like this anymore.
That's where I was finally told I had a 25% chance at conceiving naturally. And then IVF was our best bet to be a mum.
So it was traumatic. It took me down a path of many questions. And I kind of resorted and mentally prepared myself to think, "Okay, I may never be a mum, and that may be my path, and that's okay." You know, there's plenty of other things out in the world that need me and, or babies need me, or whatever that may have been.
Until, yeah, our little recent miracle and yeah, it's been kind of a bit of a shock, a bit of a, yeah... we conquered the 25%. Feeling blessed at this point in time.
I think the biggest myth for me, and it's always been a kicker, and probably more so since being on that IVF journey, is doctors telling me pregnancy is a cure.
I had a flare-up and went into the doctors and said like, "Hey, I need something. I need pain meds," and they just kind of said, "Oh, have you tried a contraceptive?"...
In all my notes it says actively trying to conceive, and so I was just like, no. Like, "No, I don't want contraceptives. No, I don't wanna go on that pill," like, because I am trying to conceive.
And they were like, "Oh. Oh." And the, and vividly, I vividly remember this conversation. She turned to me and actually said, "Well, pregnancy's gonna be good for you then."
"'Cause it's gonna cure your endo."
I was absolutely gobsmacked. So that is probably my biggest myth buster, is pregnancy's not gonna cure your endo.
Getting pregnant doesn't remove your lesions. It doesn't remove your adhesions. It doesn't remove your pain. It simply pauses it for a moment. Yeah. And that endo's gonna come back the other end.
My biggest advice for someone trying to get diagnosed is don't stop, and don't just give in. I feel like I let myself down in that factor. And especially, yes, I was diagnosed young... but I had no information. I didn't push for any.
And I think for me that could have changed, obviously, my fertility journey now. So for someone who's wanting to be diagnosed and knows they've got these symptoms, keep going. Go out of town. Find your specialists. You know, keep pushing for information 'cause, one, you do deserve to know that, and two, you don't deserve to live through that pain.
For someone diagnosed, I would probably say to them, listen to your body. Take care of you first. And I know that's so much easier said than done. But if you're not well, you're not there for others. Just listen to your body. Rest when you need to rest. Breathe when you need to breathe. You know? And actually say, "No, I'm not feeling well today."
Put in those boundaries. Yeah, your boundaries are your best friend living with endo.
I think the other thing is, um, not letting it define you. Like, endo's not you. Endo's something you live with and something you suffer with, but it's not you, so don't let it define you. It's still part of your journey, but there's so many personalities out there that shine so brightly and don't need to really be crowded by the diagnosis of it either, so.