Ollie
Ollie, 36, Wellington
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I'd been diagnosed with PCOS (PMOS) when I was like 15. And then maybe two years before I went to the UK, I had an endometrioma. But the doctors were just calling it a chocolate cyst. And nobody told me that—endometriosis.
Um, the only person who was a doctor in New Zealand who ever suggested endometriosis was a gastroenterologist I saw because of all of the food problems I have. He suggested it, and then when I was in the UK I was like, "I feel like I have a cyst." So I got a scan done, and it was another endometrioma.
And then they referred me to the endometriosis clinic and they diagnosed me doing an ultrasound with a stage four deep infiltrating endo. And then they're like, "You can, you can have a baby or go on the pill—or have surgery."
I'm like, "I don't want any of those." No, thank you.
'Cause I have endometriosis on my bowel. I used to wake up every night in pain, like, I don't know, like 3:00 AM or something, when my food is like, my dinner's like got to some specific part of my digestive system.
And then also because of my immune system dysfunction and the extent of my disease and the whole way that like there's estrogen in mast cells. So I have a lot of like histamine problems—and just food is a nightmare for me. And it's just getting worse.
So, I manage it through diet after, like, working with a dietician. And I do like heaps of like anti-inflammatory stuff, like as much as I can.
When I have a really bad flare-up, like I can't eat a lot and also I don't really absorb a lot of nutrients. And a lot of nutrients are being taken up by like my body trying to fight the inflammation. So, then my weight drops really low. Which is not ideal. And then it's like a lot to try and put that weight back on when you can't eat a lot.
So it's just, it's a, just like a constant management thing.
So I was doing my master's in psychology the past two and a bit years while working full time, which was really stressful. Stress makes everything worse.
I'd say it's been progressing over time, and I just get more and more symptoms. I'm just trying to figure out what the best thing is for me, 'cause I've decided I don't wanna have children.
So the issue, I guess, just for me is the extent of how much it's impacting the rest of my body.
I feel very lucky that I can work a full-time job, but I do have a lot restrictions that I know I need to put on myself. Because I know the consequences. And like, I got a really, really good mark for my master's thesis. And they said, "You definitely need to do a PhD." And I'm like, "Oh." I don't know if I can put my body through that, though.
I gotta pay for all my medical stuff. Yeah. So I can't not have a job.
The fact that it's like a whole body disease—it's not just a period problem. And that means that you can be impacted in multiple ways at any day of your menstrual cycle.
I would say to try and bring their partner or close friends or family along with them on the journey as much as they can, so that they really understand what it is that they're facing and have dealt with up until diagnosis and will continue to deal with, so that they can support them to the level of support that they actually need.
And so that they can also help to advocate for them if they come up against blockers in the health system or that kind of thing, where they're not getting the treatment that they need, or they're not being taken seriously in their pain or whatever.
Because it's so much to deal with just living with the disease, let alone trying to advocate for yourself and feeling like people close to you don't get what a big deal it is.
So I would think that trying to build your support system from really early on would be as much as a good thing as any of the other stuff, 'cause it—does take a toll on you mentally.
And if, you know, if they can't find that with the people in their life, then to try and find that with communities of people who have endo as well.
But like just being able to have that and not feel alone in it, I think is probably gonna be really helpful for someone who's newly diagnosed, I reckon.
'Cause yeah, it's pretty tough.
(Interviewer: That's an understatement.)