The Edge: Conversations
The Edge: Conversations
Tara Rimmer discusses the pain of endometriosis
Tara Rimmer, a successful and driven entrepreneur, shares her remarkable story of powering on through a debilitating and devastating journey with endometriosis.
Welcome to the edge conversations. A podcast series produced by the Institute for molecular bioscience at the university of Queensland. Each episode is a deep dive into the often lifelong journeys and struggles of people with infection, pain, and other chronic illnesses by high harnessing expertise in chemistry, structural biology, genomics, cell biology and bioinformatics IMB has become Australia's leading life sciences research Institute set apart in its ability to translate basic biology through to health outcomes. IMB is bringing new treatments to patients for infection, pain, chronic disease, and more the edge conversations, personal and inspiring stories. Fueling I AMD pursuit of cutting edge research Today we're talking to Tara J Rimmer Tara's story is one of a silent and crippling disease that affects more than 10% of women in Australia. So Tara, thank you very much for joining us for impact stories today for IM B. Um, yours is a really fascinating, but unfortunately long and often at times. Um, painful story. Um, do you wanna start from the beginning for me?
Speaker 2:Thank you for having me. You're
Speaker 1:Welcome.
Speaker 2:So I found out about my endometriosis by accident. I went for a pap smear, just my general checkups and the, it came back irregular. So they put me forward through to a gynecologist and she then did some tests and checks and found out that I had growth inside of me. And within that meeting, she decide or determined that it was cancer. Um, they obviously then rushed the results and fortunately, I didn't have cancer. I had endometriosis. And
Speaker 1:What did you think when they said endometriosis? Was it a relief because you didn't have cancer or was it like, what the hell is that?
Speaker 2:I basically got told I needed to have a laproscopy and I got a leaflet about fertility and instantly got told, um, have IVF. And so for me again, that was like, whoa, I think I found out when I was 26 or 27, w I'd come off the pill, which was how I'd like had the irregular pap smear, but I'd kind of come off the pill casually. Wasn't really trying for baby. Let's just see what happens. So to then we go straight into needing IVF and this operation, and I was like, there's a lot of things happening right now and I don't understand it.
Speaker 1:Did you ever have a point where all of the pieces started to fall into place? Like the, oh, that's not, you know, just a, a, I don't know, pulled muscle that's like endometriosis. Did you ever have like that aha moment with it where you went? Oh, all of these things now add up to, there has been something wrong with me all along.
Speaker 2:I always used to joke that I've got bump cancer. I used to run and I thought I was really unfit and got a stitch all the time. And even when I'd started running for maybe like six months, I was still getting a stitch and I understand why I wasn't getting more fit. And so again, I just mentioned it in passing of like, oh, when I run, I get this like contraction pain and I can't walk anymore. And my doctor said, yes, that is contractions because you are ripping your muscles apart when you run. And so I didn't really have a like, oh, everything makes sense. Now it was just more be, its were popping up.
Speaker 1:So you've been, um, you don't have cancer, which is great, but you have endometriosis. Yes. What happened then?
Speaker 2:So I had to go for a laproscopy that went well, except they found out it was worse than they expected and I would now need a bowel resection. And so that means another operation with another specialist. Um, the second operation, wasn't the best time of my life. They accidentally killed me on the table. Um, and that then obviously then makes every future decision quite stressful. Um, and upon finishing as well, all my operations, I was told I was cured.
Speaker 1:When did you start to feel like things? Weren't right again, like what, what happened after the second operation?
Speaker 2:As soon as I had my operation, I had so much energy and things that were hard that shouldn't have been hard were no longer hard. I could wake up in the morning and not be tired. And I wouldn't always just have this like constant pain in the back, like just lingering. And I think it's why you don't really realize you have the pain because it's always there. And so it wasn't until the pain came back, then I was like, oh, hang on. I haven't had this for a while. So I had a really great like six month glow up. I like to call it where suddenly I can run 10 Ks and I'm super fit, super energetic and super happy. And um, and then it just started declining again. So I actually had about, uh, three operations in about a period of three months. Um, so it was quite a lot
Speaker 1:From there. Um, how do you feel when it's bad?
Speaker 2:So the moment it's really bad. It's actually worse than before I had my first operations. Um, I'm now at a point where I am bedridden for four days a month pro and I used to be able to carry on, but now I literally, I cannot even speak. It's so difficult to explain how you don't have the energy to speak. Like I'm exhausted. And if I stand up I'm nauseous all of the time it's and it's headaches, leg aches, panic back ache, then you've, it's just this constant array of like, suddenly I lose my appetite then I don't. And it's just,
Speaker 1:It is no wonder that it really kind of had been put in into the too hard basket. Yeah. For a long time.
Speaker 2:Realistically, knowing what I know now, I actually think I had this since I was about 15, even though I didn't get diagnosed until I was, I think it was 26. I've had these problems for a really long time. And I've had this random fatigue that people will put it down to. Stress is always like a great thing to be told that you're stressed. And you think I don't actually feel that stressed, but maybe I am stressed. Am I blocking that out? And I think as well with women, we block out problems, we prioritize different things. And so then you go to a doctor and you think you tell them, oh, I I'm so tired. And I'm so I don't know why I'm so are you stressed? And I'm like, no, I don't think so. Well, and then they tell you, oh, what do you have going on? And you list all that's a lot going on and you think, okay, it is, but it's not
Speaker 1:For me. Yeah. It's no different from my friends. They really doing as much as I am kind of thing.
Speaker 2:One of the wildest revelation I had was when I first kind of like was telling and about endometriosis, I was talking about periods and I said like, oh, there's this whole thing beforehand. I'm tired. And I'm exhausted. And I'm cramping and I'm swollen and I've got spots. And she says to me, oh, mine just comes. I was like, pardon? What? And she's like, oh, it just appears out of nowhere. And I thought that joking was ridiculous as everybody goes through this. And she's like, no, it just happens the other day. I didn't even know it was coming. And I had to run to the shop to buy some underwear. And I'm like, this is wild. And it's just because actually that's, what's normal. Whereas, because I think there's a, the, the reputation of period and women and drama and emotions and crying. That's what we think is normal. Actually, you should really just have your period and get on with your day. But
Speaker 1:Over a period of time, it is very easy to normalize. Yeah. That whole list of, um, ailments that you went through before. So you've had your three op three months. It's been a couple of years since the last job. Yeah.
Speaker 2:Um,
Speaker 1:What's happening now?
Speaker 2:I need an operation. I don't want to have one.
Speaker 1:How long have you known that you've needed to have one
Speaker 2:I've needed to have one for about two years? It's actually been nearly four years. I think since my last one on and know, I'm comfortably aware I've needed one for two years. Um, obviously now I'm in a point where you can't bleed or spot for 20 days a month and then logically think that that's acceptable. I'm very aware of the crazy of me making this decision. But the flip side of that is last time they accidentally killed me. So not keen on that experience again. So is this real battle and turmoil
Speaker 1:If, um, you had the opportunity to talk to, you know, your young women, 15, 16 year olds who, you know, have been diagnosed with endometriosis, what, what advice would you give to them? What would you like to tell them about it?
Speaker 2:I think my biggest thing is that you're not being dramatic. You're not exaggerating that just because people can't see what's happening, that doesn't take away from what you are going through. Um, I think with the research that is happening, there is hope that this, that this will be managed or controlled or ideally just removed for future generations. But I think if you think you even have a problem, speak to somebody, speak to a doctor. If your doctor doesn't understand, you find a different doctor. Um, a lot of doctors are male. They will predominantly talk to you about fertility. And you might like, especially if you're a teenager, that's just not something you wanna deal with. If you're just young and you are in pain, find a different doctor, somebody will have the answers. It's just, it's not normal to go through this.
Speaker 1:It's not. Thank you very much for your time today, Tara, it's been really eye opening and affirming and you know, good luck of surger, please don't die on the table. Fingers
Speaker 2:Cost.
Speaker 1:Thanks so much. We'll see you soon.
Speaker 2:Thank you.
Speaker 1:Thanks for listening to the edge conversations for more information on the Institute for molecular bioscience at the university of Queensland, visit their website, IM B UQ, EDU AU.