Empowering Women Project
This podcast is for the women who know deep in their soul they are here for more. They are done with bs stories and limiting beliefs that are holding them back from their dreams becoming a reality. This is for the women who are ready to jump in the driver’s seat and start to pave the way back home, to her.
Empowering Women Project
Finding Her Voice: Rachel Bishop on Endometriosis Advocacy and Empowerment
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After years of silent suffering, Rachel Bishop finally found her voice in the world of endometriosis advocacy. Join us as Rachel shares her personal journey of battling this complex and often misunderstood condition, shedding light on her struggles with delayed diagnosis and the invasive medical procedures that followed. As a passionate advocate, Rachel opens up about the crucial role of community and support groups, bringing attention to the broader issues surrounding women's health and the resilience needed to navigate these challenges.
Endometriosis is more than just a reproductive issue; it's a whole-body disease that can lead to severe, even life-threatening complications. Together with Rachel, we explore the widespread impact of endometrial-like tissue on various organs and the emotional and physical toll it takes on individuals. Our conversation challenges the misconception of endometriosis as solely a 'women's disease' by acknowledging under-researched groups, including the trans community and biological men. Rachel's story of seeking proper diagnosis and undergoing laparoscopic surgery unveils the harsh realities of managing the disease and the significance of holistic therapies and supportive medical practitioners.
Empowerment and creativity take the spotlight as Rachel discusses her initiative to build a supportive network through creative workshops. These workshops offer a safe space for artistic expression, connecting individuals through shared stories and fostering a sense of community. We also celebrate the tireless efforts of advocates within the endometriosis community, emphasizing the importance of perseverance, education, and inclusivity. From the transformative potential of medicinal cannabis to the power of art as therapy, this episode highlights the multifaceted approaches to coping with endometriosis and underscores the value of believing in oneself and in the strength of a united community.
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All our love,
Jules & Dayelene
Thank you. Stories and limiting beliefs that are holding you back from your dreams becoming a reality.
Speaker 1:Come, jump in the driver's seat and pave the way back home to her. This is a space for you to feel seen, heard, supported and accepted for who you are, who you were and who you're becoming.
Speaker 2:Celebrating you wherever you are in your journey. Sit back, grab a tea or a wine and come empower yourself with us. Jewels and day, let's grow. Hello and welcome back to the EWP. Hello, beautiful humans, we have another outstanding guest today and I'm so excited. Please welcome, Rachel Bishop Hi how are you going?
Speaker 3:She is so cute.
Speaker 1:She gave a little wave.
Speaker 2:So, rach, we are really excited. You just have a wealth of knowledge in spaces that we have touched on mildly, but I think that it'll be a really beautiful conversation with you today. Did you want to start by introducing yourself?
Speaker 3:Yeah, sure. So yeah, I'm Rachel. I'm nearly 40 years old and I'm Geelong, born and bred. I work here, I live here, I play here, and I am a member of a few community groups, one of which being Endo Geelong, which is a local support and advocacy group for people with endometriosis.
Speaker 2:That is amazing. And so what brings you into the endometriosis space?
Speaker 3:So it's through being a patient. So I was diagnosed with endometriosis in 2021. And the diagnosis delay for me was quite long. I've had problems since I was about 14. So not being diagnosed until very, very late had a massive impact on not just my diagnosis itself but its recovery, and I suppose I found the biggest struggle. One of the biggest struggles was not knowing anything about it, not knowing anyone else with it, and so it can be a really isolating and debilitating condition. So that was my sort of introduction to it a few years ago.
Speaker 1:Oh honey, sending you so much love. Honestly, there's so many women that are so deeply affected by endo or know someone Like. It's such a huge thing that people navigate these days. It's just crazy.
Speaker 3:Yeah, it really is. It's um, I think it's a lot more common than we actually think. I know that they've recently updated the statistics from, say, one in nine to one in seven, but I would strongly suspect that it is a lot more than that amen, amen.
Speaker 2:Oh, I got full goosebumps already and it's quite hard to advocate for yourself. And then, as well, as you were saying, it's like you know it's such a taboo topic where women just aren't sharing or talking or feeling like they can tap into that space in the open because it's quite vulnerable right to to talk about. So, um, it is good to have support groups now and to see that more women are coming forward, are being empowered, are sharing their stories, using their voices and, most importantly, supporting oneself but also one another through it.
Speaker 3:A hundred percent. We find that typically, you know we're having to the support groups themselves and that community that we foster as well is it's critical in dealing with conditions because unfortunately we don't have a lot of education in this space in this country, so we rely very heavily on our community to share experience, share knowledge and build that level of trust I suppose that we don't have with a lot of the practitioners that we have in this space amen and then educating those around you, because I guess when you you haven't been to endo yourself, you don't understand what you are navigating through, like your cycles and all the rest of it.
Speaker 1:So yeah, as a friend and as a family member, educating yourself around endo as well. I think it's really important.
Speaker 3:No, I was going to say 100 you percent. You've nailed it.
Speaker 2:Yeah, I think it's really hard, as well to like go through that medical avenue, like, and it's so hard to get a diagnosis because they can't actually see it on a scan. Really. So, at the end of the day, you then end up having to go in to have diagnostic surgery, which is pretty intense. It, you know it's quite debilitating for a few days, like you're just out of out of whack, out of commission, um.
Speaker 2:So yeah, it's yeah wild amen you would think in this day and age that we'd be able to pick it up with something with you know a blood test or a scan or you know something, aside from us having to go in and have surgery as women um?
Speaker 1:it's crazy what we go through as women, like with our reproductive system. I think Julia and I were actually touching on this on the weekend, like just around sexual health and you know, like all of this stuff, like it's just, it's actually wild. What we navigate um as women we're are amazing, honestly, and then we show up for, you know, our communities and all the rest of it too. So whilst we're navigating it all, it's just amazing.
Speaker 2:Yeah, wild, yeah, we were touching deep into that on the weekend and, you know, as a woman, as a woman, as a woman, you go off and you know you a women as a woman. As a women as a woman, you go off and you know you have a sexual partner and even just sleeping with somebody new can bring UTIs and you know BB infections and all of these risks and stuff, and it's just crazy, whereas men.
Speaker 1:I feel I'm sorry, man, I'm not putting you down in any way, shape or- form, but can just basically be like I think we're just more conscious of, like, our sexual health. I don't know if we're just talking on it for women, but we're just so much more conscious because, like, we want to carry babies and we want to, you know, um, be able to bring life into the world and all the rest of it. So we're just extra aware of that. And I think there's so much like education on women have like, doing all that stuff and you know what it can do to us, that we've just been ingrained with that from such a young age.
Speaker 3:So, yeah, a hundred percent and I think that I mean it's just my perspective and I'm sure others experience this as well. I feel like we kind of bear the brunt of those issues, know like I know, I'm sure, and I know that men have you know if they contract an STI or whatever like yes, it has impact, but I feel like for us it it's quite, yeah, it's quite difficult.
Speaker 3:And just on the topic of sex as well, is that the pain that comes with it when you have endometriosis as well is really really difficult for some people. So, you know, trying to explain that to, say, a new partner or even their existing partner so, for example, you know it didn't affect me up until a certain point because I had grown ovarian cysts and things and then things become more painful. So then trying to explain that and then having the other person go well, you've never had any problems before. Why are you having problems now? Um, it's that invisible illness that's really really difficult to try and convince somebody else, but you shouldn't really have to try and convince someone but, and especially not your partner. But it does happen and there's a lot of stigma around um, endometriosis and that pelvic pain issue that comes with the condition as well. So, and it's, you know it takes a toll on you mentally as well, and you know we are very cerebral um as women, you know, we, we require a lot more, um you know, sort of mental stimulation to be engaged.
Speaker 3:And so, you know, if you're constantly just thinking about you know, am I going to be in pain? If I am going to be in pain. What's going to happen, you know, you're already in your head, and so, yeah, the experience for you versus the experience for your partner can be completely different.
Speaker 1:Oh my God, I've never even really thought of that sort of side of it, because you can be completely different. Oh, oh my god, I've never even really thought of that sort of side of it, because you can be so in your head anyway, without endo, but then going in with it, with that it's yeah, knowing that it's going to cause pain, possibly as well. Yeah, and, like I said, explaining it to a partner or a family member when you haven't been through it. I think that's why, yeah, self-education for loved ones is so, so important, absolutely, yeah, it's one thing I mean.
Speaker 3:I sort of harp on about it a lot in my friend and family circle and in just in general, to be honest, because, yeah, it does it. Even. The more information or the more knowledge you can have about it, the better. And, to be honest, you know, it's something that we're still learning. Um, absolutely, and because we don't have, you know, we're so far behind in the research, we're so far behind in treatment that you know, things are starting to become more apparent to us now that we didn't think were once linked.
Speaker 3:You know we've, we've lost, we've actually lost women from endometriosis because it attacks it's not um, it's, it's not just central to the female reproductive system.
Speaker 3:So okay what it is is. It is, uh, it's endometrial like tissue. So it's not the endometrium itself, it's endometrial like tissue that grows outside the uterus and it can grow anywhere in the body. So you have different organs being affected. You have bowel bladder, kidneys, lungs. You have people have had endometriosis in their eyes, in their nose. In extreme cases they can have it in the brain. So it's a full body disease. So it's a full body disease and, until you know, it's really, really difficult for our community because, yes, it does impact on a lot of women, but we have so many other cohorts that are usually under research, especially the trans community, and it has also been found in biological men, so it's been treated as a women's disease up until this point.
Speaker 3:But my golden rule is underdiagnosed is not the same as rare. So when they say, you know, men having endometriosis is rare, thoracic endometriosis is rare, things like that, I sort of think, well, well, it's not, it's under-researched and under-diagnosed, so it becomes a whole body problem. And because it is a whole body problem, there's so many other complications and so you know you do have women losing their lives because it's impacted on vital organs in the body that you know you need to survive, clearly, um, and so those complications have led to, unfortunately, people dying.
Speaker 3:So it's really difficult to sort of get that across to people when, um, the narrative I suppose that's been driven up, you know, and still is driven by a lot of practitioners, I suppose is that it is a period disease and it is to a degree so, you know, any inflammation in the body which you will get with menstruation obviously is going to inflame the endometriosis, but it is not the sole cause of that. So, yeah, it's really really difficult to sort of explain that to people and have them understand when you are looking relatively normal on the outside but your entire body is just being affected, even if it's just from exhaustion.
Speaker 3:Trying to stand upright for a good period of time when you're in pain takes a lot out of you. So, yeah, it's a tricky one. It's a tricky, tricky thing.
Speaker 1:Have you used any like holistic therapies um that have like ease the pain and you know um energy levels and stuff like that?
Speaker 3:yeah, I've got some great practitioners, so um, firstly, my, my surgeon. So, um, the only reason that I knew I had endometriosis in the first place was I wound up in the emergency department because I'd taken a lot of painkillers and ended up there. And they, they'd ask me you know why on earth are you taking so many different medications? And I said, well, I've got period pain. And I'm like you know, the doctors have been telling me for years I've got, you just got period pain, you've just got period pain. And I thought to myself you know?
Speaker 3:so many times I've gone to period pain and I I thought to myself. You know so many times I've gone to the doctors and said this doesn't feel right, this feels wrong you know I shouldn't be crawling home from school on my hands and knees when I'm in high school. I shouldn't be needing to take this much time off work when I have a period, um, you know things like that, that the pain I shouldn't be having.
Speaker 3:You know my legs feel like they're on fire every time I have a period and I can't stand, so you're advocating for yourself in that space is really difficult.
Speaker 3:But yeah, it's tricky when you're having to do all of that and yet the exhaustion and the the diagnosis fatigue I suppose when you're not really given an answer is, is hard. But thankfully, through being sort of put in the hospital for that period of time I I was matched up with a great doctor at the time who said this isn't normal. It's not normal. So we're going to send you off for an opinion and I met with my surgeon, dr Edwina Coghlan. She was at the Epworth in Geelong at that point. She's now consulting privately outside of the hospital but she still does, you know, a few bits and pieces in hospital as well.
Speaker 3:But she was great. She said, yep, it sounds like it's endometriosis. And she said the best way and the golden standard for diagnosing is to have a laparoscopic surgery, because you can't diagnose it with a blood test Scans. That's still up in the air. Most scans won't detect endometriosis the real sort of easiest way or not the easiest way, but the the most definitive way of diagnosing it is to have surgery and they say it's minor surgery.
Speaker 3:Any surgery is surgery quite frankly, um, mine was four hours. So they found, uh, that it was stage four endometriosis. So it ranges from stage one to four. There's also, um, people sort of contemplating that there may be even a stage five, uh, and that's extremely severe. That's when it's starting to impact on those other organs as well. But, um, because it had been left for so long to run rife in my body, um, the process of cleaning it up was extensive. I think I was in hospital for four days afterwards to recover. I had you know the catheter, I had you know the works. It was really, really horrible, and I just remember not being able to get out of bed for two days at all to walk, getting back to the car, uh, to go home was in a wheelchair. And then the process of recovery over, I'd say.
Speaker 3:I'd say the first initial two weeks were the hardest, um, not just from a physical perspective but from the mental perspective, just understanding what has happened to you, um, letting all of that history, I suppose, of medical gaslighting wash over you and you're feeling that sort of impact on a very visceral level. So all of that was quite hard. So obviously psychological interventions is great because you can talk about your problems finding online forums and things like that to try and work through it from a mental aspect, from a physical aspect.
Speaker 3:I've I've worked with naturopath, I've worked with acupuncturists, I've worked with pelvic physios and along with the surgeon as well dietician. So there's so many great alternative therapies and practical therapies that you can use and it really is a bit of a. It is a holistic approach. You have to look at the whole body in general and there are so many great things that you can do. But ultimately, when it comes to endometriosis treatment, the gold standard is excision surgery. So if you can get rid of the lesions, if you can get in there and tidy it up yes, it's having surgery, which is not great, but it does. I mean I found it reduced a lot of my problems. I've had to have two surgeries now. Wow is now Wow.
Speaker 3:And I feel like it is on the good trajectory with medical you know sort of prognosis wise. But I think the biggest, the single biggest assistance I found is medicinal cannabis. So that has been an absolute game changer for me. It has just reduced my pain levels significantly to the point where they don't impact on my daily life anymore, and it's frustrating because there are so many rules and stigmas associated with it, but it honestly it was the difference between you know taking more opioids, painkillers, winding back up in hospital with, you know, a ruined digestive system, versus something that is natural and you know, so much more effective than the painkiller itself and so many other side effects that you would get from it. So I think, as far as therapies go, personally, that is probably the best thing that has worked for me, alongside the psychological aspect and probably the surgery as well wow, honey, you've been through it all I see all, I just keep thinking now is when you don't physically see what's I don't, it's not classed as a disability.
Speaker 1:But when you're physically, someone looks well on the outside like you actually don't know what they're navigating on the inside. So like I'm at like navigating work and like study and like having to be a human in this crazy fast-paced world, whilst navigating that on the inside must just be so hard, honestly.
Speaker 2:It's so interesting, rach, because, like hearing you talk, I'm like I literally like went through. You know those stages as well, but not with the education that you have. Like the way you've described it, I was just like wow even like the care that I received. The information that I received from my gynecologist, from my team, was very different to that that you've just explained.
Speaker 2:And I know every journey is different, every experience is different, but you just have such a wealth of knowledge about what endometriosis actually is Like you could pretty much be a specialist.
Speaker 3:Oh look, I wouldn't go that far. I think that the problem that we have mostly is that it's that inconsistency with the medical profession. So, you know, we still have a hell of a lot of misinformation and medical damage out there for a lot of people, and it's not until they experience that and go searching for other things that they find. Whether it's us or some of the other leading experts around the world, the online community has been pivotal in a lot of people's journeys really because you know you can only be told so many times that it's.
Speaker 3:You know, just something that you need to put up with as a woman, or you know even if you're you know trans or if you are a male, you know you're invalidating that person's experience and I know you were saying about. You know the difference between an invisible and a physical disability. You can see the difference physically. We've had people in our community that are visibly disabled and when you're asked for the reason for that disability, when you tell them it's endometriosis uh, it's just as bad as telling them that you know, that it's you know yeah, true, in your head it's yeah they don't really understand.
Speaker 3:That's like oh, but don't you know you all get period cramps like why are you in a wheelchair?
Speaker 1:why do?
Speaker 3:you have a walker or you know why do you need a respiratory aid? Like that's ridiculous you only have this problem. So yeah, it's.
Speaker 3:It's very deep-seated that um yeah, that kind of invalidation gaslighting, which is really tough. And you know we have key, key bodies, key organizations, key practitioners that are meant to be there to support us and help us and unfortunately we get the complete opposite, which is not great. You know we still have practitioners out there blaming women for their infertility because they dye their hair and they microwave their food, and you know we have organizations that block uh patients comments on social media when they're questioned uh, about things.
Speaker 3:So it's. It's one of those really tricky, taboo topics where you do get silenced quite a lot, and a lot of our patients are, um, very fearful of the retribution that comes with speaking up because, you know the likelihood that you will be sued for defamation or shut down is very real. So it's really hard. And even in our space, in the advocacy space, you know, we have people contacting us and saying, oh, I'm due to see Dr So-and-so, what's everyone's opinion contacting?
Speaker 3:us and saying, oh, I'm due to see Dr So-and-so what's everyone's opinion? And you know, you get around the circles enough to know which practitioners are good and which practitioners are maybe not so good. But you can't say that because you know everyone's experience of those doctors is going to be individual. For starters, and you also can't be bad mouthing other doctors in that community, because it will ultimately get back to them and you're going to wind up in trouble.
Speaker 3:It's really, really hard so trying to warn each other is uh tough yeah, oh my gosh, so challenging amen yeah, and I've had like chronic pelvic pain for years and years.
Speaker 2:And they thought and it really exasperated after I had Hudson and they were certain. They were like we can't see it on a scan, but you have to have this surgery, we're certain you have endometriosis because you've got pelvic pain, because, um, you know, your periods get worse. So they actually sent me for the surgery in January and I don't feel like I was well enough educated. Um was a really crazy experience, especially as a solo mama, having Hudson and him needing to be picked up and all the rest of it, um, so that was a challenge in itself. But then afterwards they rung me and they're like, oh, you actually don't have endometriosis. And I was like, pardon, and they were like you know, great.
Speaker 2:But also it was really disheartening because then it made me feel like, oh, so they're kind of like we're trying to sweep it under the rug, like you don't have endometriosis, so you know you should be fine. So you know you should be fine. They said I had some sort of endo cells but that it wasn't considered endometriosis, which, yeah, so I was kind of left in a limbo like you know, you don't have that, so our job here is kind of done on. You go to the next sort of specialist and so it's really hard as a woman to advocate for yourself and, yeah, to go through something like that and have the education around it. Like if I had known that there were these advocacy groups, that you were knowledgeable in this space, that you had you know these, this insight and this intel available like that can help so many women who are navigating it on their own.
Speaker 3:A hundred percent. Yeah, and I think when I sort of first got diagnosed, I remember, yeah, not knowing anybody. I remember picking up a book by Bridget Hathaway, who was a presenter on Triple J. She wrote a book on how to endo and I remember picking that up and reading it and feeling so seen, uh, and going, just geez, some of the stuff that's you know, she's writing about in here really resonates with me, and so getting through that and then going, okay, well, if somebody out there knows what's going on with me, then there must be more people. So, you know, hunting, hunting for those people really is the key, and I was fortunate enough to meet the most incredible bunch of women through a lunch that was organised a few years ago and it was a fundraiser for random enduro-triosis.
Speaker 3:And I went with my mum because we didn't you know, I didn't know anyone else there. I was feeling a little bit vulnerable so I thought I'll take somebody with me that I know. And now, out of that lunch, the women that I met were I don't think I could live without them. They are just pivotal in my daily life, not just for endometriosis but just in general, like just the most resilient, strong women that you have ever met. You know the stuff that they've gone through.
Speaker 3:I mean, my journey is one of many and certainly not the most difficult of the people that I know. You know we've had women who've in our group, who've had bowel resections, who've had hysterectomies, you know and the list goes on. It's really, really difficult. So finding them was key and I think for me that then just proved to me just how powerful community really is and how you, you know your recovery really does hinge a lot on your ability to lean on others and speak about your experience and really get that validation from somebody who says, yes, I believe you, I see you.
Speaker 3:I hear you and I've gone through that. Let's talk about it and let's try and educate others so that they don't have to go through what we've gone through.
Speaker 1:Alone, yeah, yeah, oh power in numbers, hey and that I see you, I hear you, I think is like the most powerful things that we could say to each other as humans. When we're navigating things. Jules and I have said that since, like we've been become friends nearly two years ago and that was like our first thing was just like I see you, I hear you, because we just navigate so much as women and, yeah, navigating all that as well, it's just crazy. We need support and love from other people 100% and it's you know.
Speaker 3:It's even just to sort of. You know you can't fix it. You can't fix the other person's issue, but that's enough. That's enough just to say I'm so sorry you're going through this like I'm so sorry you're experiencing infertility because of your endometriosis. I'm so sorry that you can't attend this function because you can't stand today, yeah. Yeah, like it's just. That's sometimes enough to get you to the next day.
Speaker 2:Amen, amen, got full body goosebumps yeah absolute warriors and, like I already know, you're amazing, rach.
Speaker 3:but now it's just like the icing on the cake, solidify it, tell you what.
Speaker 2:It amazing rage, but now it's just like the icing on the cake. So crazy how you can chat to someone so often and not know what they're navigating. Do you know what I mean? What they're navigating and that this is going on behind the scenes? So, um yeah, big cuddles to you, and I'll give you one next time I see you but yeah just absolutely insane.
Speaker 2:You're a boss babe in so many ways. Um one thing that really struck me when you were talking I know your plate's so full, but potentially on your future vision board, have you ever considered starting a podcast about endometriosis?
Speaker 3:It's something that we've spoken about, I think, in the group, definitely. I wonder I'm not entirely sure if there's any others out there at the moment but yeah, it's definitely something that I have thought about. I think I can't remember what it was now, but I'm sure I came up with some sort of a witty punny kind of title for it at some point.
Speaker 1:I can already see the podcast cover. It's going to be cool.
Speaker 3:I think I was going to call it something like the chronic like, because you know you've got chronic illness, but it was more like the Chronicles of Narnia, like sort of a bit of a play on Narnia, something like that. But yeah, I think there's a lot of value in it. If it's not me, someone should, I think, definitely start one, because it would be very beneficial for a lot of women.
Speaker 2:I would listen for sure. It would give me a deeper understanding of what so many women are navigating, what our friends, what our sisters, what our you know, our families used to navigate, um, so, yeah, I think it. It's something that, yeah, maybe potentially you should do in the future when your plate isn't so full.
Speaker 3:Yeah, when I have a gap in my very busy schedule.
Speaker 2:I'm also drawing the artwork, like designing the cover, literally.
Speaker 1:I know I had like this vision. It would be really cool, like just this. Yeah, it would be different, it would be awesome. I was also going to ask what are the Facebook group communities you are in, and are they open to the public, or do you need to know someone to get into them?
Speaker 3:No, there are some public ones, so we've got our own for.
Speaker 2:Endo.
Speaker 3:Geelong just for our local community, but there are, I think there's the Endo Space, which I believe is worldwide. There's also Melbourne Endometriosis Sisters as well, that's one.
Speaker 3:So there are a good few communities in there and I think with the Melbourne Endometriosis page, I think a couple of our girls are moderators. I shall be in there as well. But yeah, it's just's fascinating, especially from the global um pages, to see just how um. You know, it's not just our country that's behind, it's a lot of communities that are behind um and, as I said, you know, especially with the queer community too, they're they're kind of left out from a lot of these conversations because we do have such a gendered view of what endometriosis is and that's. You know, that's not anyone's fault, that's just how things have come about. You know, I keep saying if this was a men's disease we would have a cure by now.
Speaker 1:There's actual studies I can't remember the actual statistics on how much they do studies on men's sexual, like you know stuff. But compared to women's sexual, like reproductive like, it's like insane, completely out of this world, Like you wouldn't even believe it. I can't remember the statistics, but I want to know exactly what they are now. But it's just insane how much they put research and money into that compared to women. Insane, yeah, yeah, definitely.
Speaker 3:And it's just that. You know it just comes down to that sort of patriarchal system that we've been in for so long. You know we are sort of considered to just be breeders at certain points and you know when we can't't do that there's not much more we can. They can do for us and yeah it's.
Speaker 3:Yeah, it's quite difficult to navigate that and I can imagine I can only imagine that if it's that difficult for um biological women, then you know how difficult would it be if you were a man to go to a doctor and say I think I have endometriosis. You would get laughed out of the room if you said, I think I have endometriosis.
Speaker 3:And there's so many debates that happen online and you know, keyboard warriors are fabulous and so many women have gotten in there and anytime someone speaks about a trans community or anytime someone speaks about a male having endometriosis, they jump in there and they go. You're actually you know, oh, you're doing wrong by your own women, you know this is a women's disease, blah, blah, blah.
Speaker 3:And I just turn around and I say you know what? If this wasn't, you know, let's study it more. Let's study the men more, because if we keep finding that these conditions are prevalent in men as well, maybe we'll get a bloody answer you know, so it's not necessarily a bad thing that they're finding it in biological men, because we might see change. Amen, definitely.
Speaker 2:For sure, yep, and so are they studying it profusely at the moment. Do you know in Australia of anything that's happening on that side of things? Not that I'm aware of it's the.
Speaker 3:the research side of things is really frustrating because, um, especially with our community, you know, we we have, like I said, these organizations and these peak bodies that are there for for us, um, and a lot of fundraising gets done and a lot of money is generated towards research and unfortunately, we can't control what research is done. And I think if somebody told me that there was yet another research on the link between period pain and mental health, I would scream, because it's pretty bloody clear. We know that there's a link, a direct correlation between pain and mental health.
Speaker 1:That's a given.
Speaker 3:We don't need to research that anymore. What we need to research is the impact that it has on the queer community, on First Nations women, on biological men things like that that are actually valuable.
Speaker 3:I find that a lot of the studies and stuff that happen are just lip service. Same goes for a lot of you know, politicians and things that, yes, there has been a lot more talk about endo in the news and you know it is more of a known thing now in the community, which is great. But I just feel like there's so much more that we could do from an action perspective versus what's actually happening in this climate. So it is, yeah, it would be great to have some sort of a patient advisory panel or something to that effect to actually drive where this research goes. We're certainly a vocal community but, again, when those comments begin to be shut down or blocked or deleted or shadow banned, it's really tough to kind of get the message across, you know.
Speaker 3:So we're kind of at the behest of whatever the government or whatever these bodies decide to do with the funding that they they allocated. And I remember when they announced the funding for the endometriosis clinics around Australia, you know the first questions we were asking in our group was well, who's running them? Because if you have a clinic that's run by a professional that is detrimental to the community, then it's basically a useless tool. So it's one of those things where there's just so many different factors that contribute to the success of what they're pouring their cash into.
Speaker 1:Follow the money.
Speaker 2:Sorry, Jill Sorry. Are there any ideas of what causes?
Speaker 3:it no, and there's no cure. So that's the really, I suppose, hard-hitting thing for a lot of us is that we know that we can't fix it. We can treat it, but we can't fix it. There have been studies, and I'm sure that there are continual studies, with regards to whether it is a genetic disposition, whether it is, um, something to do with your environment, whether it's something to do with you know, um, your genetic makeup in general. It's, it's hard to sort of know that, um, and, yes, they do look into it, but unfortunately there doesn't seem to be any definitive reason but it seems to be on the rise as well, doesn't it like more people are getting diagnosed with endo?
Speaker 1:yeah, was it always misdiagnosed before and then just finding out.
Speaker 3:Yeah, yeah it. It, like most times it is. It's that diagnosis delay, so it's not that we're seeing more people having it. It's this that they haven't been accurately diagnosed up until this point yeah, and unfortunately, without that early intervention, you'll end up in situations like a lot of us who have that really late diagnosis delay, and it is um like to look at it, to physically physically look at it when you see endometriosis. The best way that I can describe it is it looks like mold.
Speaker 3:So, it kind of is little black spots that appear on that lining of the organs or the outside of the uterus or the ovaries or whatever it looks like mold. You know the um, the outside of the uterus or the ovaries or whatever it looks like mold, and so if you think about the way that the mold spreads um, you know this is essentially the same sort of thing. So it's um. It also causes endometriomas as well, which are those um like the blood-filled cysts and things like that, which can burst um and put you in hospital and have all sorts of dramas with that.
Speaker 3:So it's yeah, it's hard to sort of understand and accept that. You know, this is something that's just happened to me. I don't know why it's happened to me. It's never going to leave me.
Speaker 1:No answers.
Speaker 3:Yeah.
Speaker 1:Either way.
Speaker 3:Yeah, but it's like I can do A, B and C to kind of treat it.
Speaker 2:But that's as good as it gets, really yeah oh, you'll be cuddling in the endo community, seriously yeah I just have so many questions I could check um, but I think you spreading awareness and talking about it and advocating for it, as always, it's gonna save so many people in the future and potentially help them get diagnosed earlier or understand what it actually means. Understand the process, what's happening, what's you know what's going on in their body? Um and is, do you know if there's a link to so? Those cysts that you're talking about are those ovarian cysts or different?
Speaker 3:uh, so they are similar. Um, so you have yeah, you've've got the endometriomas themselves. Yeah, they are cysts that can go. You know, they're not just linked to the ovaries, so they can sort of pop up wherever. So you can get both, which is a bit tricky. But yeah, there's all sorts of gorgeous, lovely little complications that come along with having endo little rabbit hole, yeah, it really is my eyes and I think and that's just it.
Speaker 3:You know, like you, you are lucky, you are very lucky if you find the right practitioner. You're lucky if you find the right community, because if you aren't, you know your journey would be so different.
Speaker 3:You know same as you were saying, jules, like you know a lot of, I know a lot of patients who've been in say similar position to yourself when they even come out of surgery. And then you know, five minutes after waking up from the anesthetic and someone comes up to your bedside and says you've got endo, but we can't do anything about it today because we don't have a specialist here, so you're just going to have to go home and then be left, and you know. You then have to go home and try and process what you've just been told and understand what you've got and that sort of thing. So it's really lucky if you find the right people and, like I said, I was very lucky in finding my surgeon and my practitioners and my people, and I think that probably was the driver for being a creative person myself, coming up with workshops for the endometriosis patients so that the community could meet each other in a safe space and a non-confrontational space, because you know typical support groups, um, some people don't feel comfortable going. It's quite intimidating, um, especially when you don't know anybody and you don't really understand stuff that's going on in your own body too. So, um, something that helped me through my recovery was to be creative, and so having the platform and the studio space in town to run those workshops has been excellent, and I've had probably about a dozen now that I've run with different people.
Speaker 3:And the best thing besides seeing what people create on the day because it is such a great thing to see what people come up with with um, with whatever, means something to them. You know, the basis for these workshops is to walk away similar to like a paint and sip kind of feel, but I want you to walk away with something that you're proud of and that you would look at and remember how strong you are. You know you're not just going home with the copy paste version of everybody else's painting that day, um, and I mean that in itself is incredible, but the biggest thing that I see at the end of these is people swapping numbers, swapping social media profiles. Um, you know, just getting to know each other, uh, has been phenomenal and my, you know, explaining that through, to say, my surgeon. I was lucky enough that she applied for a grant for me through the Epworth to actually run free workshops through March this year for Endo Month, which is in March, and get you know tens of, you know, tens of women, but you know at least 50 um patients that I got to meet and hear different stories and um, and now I'm sort of I'm doing another one for the epworth at the end of the year and it's just great to sort of try and get um recognized for for that and hopefully, once the sort of the study is accumulated and we kind of get the findings from it and all that sort of stuff, it would be great if this could be part of someone's multidisciplinary care and it's not just the, the artistic expression itself.
Speaker 3:You know that's definitely valuable, but for me it's really about that sense of community and I think that if you have that icebreaker, if you have that sort of thing that people can do and be practical, you know it's not as confronting as rocking up, sitting in a circle, not having anything to you know hold in your hands or anything like that, and to just sort of be engaged in that way. You may not even speak throughout the entire two and a half hour session that you sat there, but if you're listening and you're hearing other people's conversations and you're hearing things that resonate with you, maybe that's what you need to get out of it. So, um, yeah, it's. It's just like I said, that that community uh side of things, and it's the same for for any condition I would say anyone with um chronic pain, anyone with um cancer, anyone you know so many of these conditions it's the community that gets you through at the end of the day, um, because we are definitely stronger together than we are isolated amen, amen.
Speaker 2:Rach put on a beautiful um painting, arvo, for us, because we she was our team lead for the no more and violence rallies and, as her, thank you to us as a team. She invited us all to come in and engage in a beautiful afternoon and now I can definitely say that that painting that I made.
Speaker 2:I look at it, it's in my lounge room, I look at it every day and I'm like I actually made that and it makes me smile and it makes me just think about the group and the community that we had built. And I did not expect I didn't go in knowing what I was going to paint, but what I ended up coming out with was just so beautiful and just truly explained my journey. It was wild, um, but yeah, it's definitely a piece I hold on to and near and dear to my heart now. So, yeah, thank you right for all that you do.
Speaker 3:Oh, I'm so glad that that's exactly what I want to get out of it is that. You know, yeah, it's just one of those things where you wake up in the morning you go I feel like shit, I can do it. I'm struggling to be able to look sideways and go. Nope, actually I can. I can do this. I can do hard things. You know, I've survived a hundred percent of my worst times. I can get through.
Speaker 1:Amen. Do you do like a pop-up shop or do you have an actual shop that you have that people can go to, or do you run them? How do you run them?
Speaker 3:most of the time I'll run them out of our studio. So I'm member of Geelong illustrators, which is just a local community group of artists, so we have a store in the Geelong CBD in Mirabal Street, um, but I have done mobile ones as well, so yeah the one for the Epworth that I'll be doing. In a couple of weeks I'll be going up to Melbourne, to the hospital, to do one at hospital.
Speaker 3:Um, I've gone to workplaces, I've gone to people's houses um so yeah it's, it's something that I can kind of take with me wherever I go. Uh, which is which is great? And I think it's because it's nothing that's too complex. You know, you don't have to be a painter, you don't have to be an artist yeah all you need to do is just come in with an open heart and want to do something for yourself. That's pretty much all you need when you come to those oh amen, you're an earth angel.
Speaker 2:I went and dug out my acrylics after, um, that painting session. I know I've just got to go and get some canvases and, yeah, I'm going to implement some self-care around painting because it is, it's very therapeutic.
Speaker 3:It just gets you out of your head and onto the canvas it really does, and I know that the workshops that I do are quite gentle, but I think in the future I would love, love, love to do some sort of a rage painting workshop. You know whether it's hurling paint at a canvas physically, or, you know, smashing something or breaking something and creating something new out of it. Um, so many things, yeah, so many ideas that's so cool that would be amazing.
Speaker 2:I'm coming. Yeah, definitely so cool that'd be so good and there's nothing I don't think like of. There's like the smash rooms and stuff like that, but I've never heard of a Rage painting. It's patented here. Rage is patented, yeah, copyright.
Speaker 1:You can't steal it. Listeners.
Speaker 3:That's it. You just can call me Rachel from now on.
Speaker 1:Oh, my God.
Speaker 2:She's so cute, she is, she's so cute.
Speaker 1:Uh, you just have such beautiful energy and such a wealth of knowledge and, yeah, so grounded as well. Her nails are slaying as well.
Speaker 2:We just have to say always, they keep popping, are they?
Speaker 1:halloween nails. Halloween nails do they? Glow in the dark.
Speaker 3:No, these ones don't that's okay.
Speaker 1:They look so cool. I keep seeing them pop in and I'm like oh my god, this way normally her eyeliner matches her nails like sometimes when we've seen her.
Speaker 3:She's sometimes like for the rally she had?
Speaker 2:yeah, she had, or I think it was orange orange, and then her eyeliner was orange as well, and it's, oh my god, the eyes. So amazing, beautiful, good style. Was there anything rage that you wanted to share that you haven't had a chance to touch on today? Oh gosh not really.
Speaker 3:I suppose I've covered a lot of things, but I think the biggest thing for me is, um, like I said, finding those right sources of truth I think is really important. So you know, if you are a patient that has endometriosis or you think you have endometriosis, uh, there are certain uh practitioners and businesses and things like that that um are really helpful to follow, like it's handy to follow things like endometriosis Australia and those sorts of peak bodies, which is great, but it's probably the less popular or lesser known accounts and things to follow that are really great sources of truth because, as I said earlier, we still find that there is a lot of misinformation in our community. So, you know, people like, like I said, bridget Hutsway, with her book With how to Endo, one of our incredible friends, alex Mitchell. She runs Invisible, iconic and has been doing such incredible work in the endo space, not just here but overseas. She recently flew over back home to Romania and she also ran an endo circle in Scotland and you know this is somebody who has extensive endometriosis problems and had to have, you know, oxygen tanks on the plane and things like that. She's you know, but still is is pushing herself to be that advocate for for others around the world, which is amazing, and and just her knowledge is is phenomenal. There's um heather who runs the endometriosis summit. She's phenomenal. Um, we've got uh there's, I think doctors overseas that are amazing. You've got dr mang's. You've got dr ken cernervo and dr andrea vidoli.
Speaker 3:There there's so many incredible um accounts to follow that have this accurate, wonderful information and I think you know if those, if all of that is too hard to find because it is a lot of information at once, I would always just recommend you know, start with one, because you will find the others through that one. They are all closely interlinked because they share knowledge between each other and on their social pages as well. So even if you started at, say, us with endo geelong, you will find links to to other practitioners etc. Or invisible iconic, you will find links to others.
Speaker 3:So I think the main message I think for them is just don't don't give up, don't stop pursuing answers, because there are answers out there and your pain is very real and you always trust your gut. Literally, in some cases, most of us have digestive issues. Trust your gut and, yeah, don't give up on trying to find out what's happening with you, because there will be, even if one person out there who says I get it. That is the starting point to the rest of your life amen, yeah, yeah, yeah, beautiful, um, and is there?
Speaker 2:if there's any links, rach, that you want to share with the community, please send them through to us and we'll pop them in our show notes and we'll pop them on Insta when we share the cam carousels. The canvas can't talk. Okay, well, I suppose we'll end with our two questions, then, and so the first one is if you could say anything to the younger version of yourself, what would it be?
Speaker 3:Oh, this is a hard one, and it's when I. It's one of those things I always see on RuPaul's Drag Race and I get teary when I see this question being asked of the queens at the end, because you do, you think about your inner child and you go what, what could I give you?
Speaker 3:what, what comfort could I give you? I think, um, the one thing I would say is um, it's gonna be all right, it's no matter what happens, it's going to be okay. You know you're going to go through some really horrible things, you're going to have people not believe you and you're going to feel quite isolated for a lot of it, but it will be okay and you will find your people. And I think it is that similar message I was just saying before to everyone else is just don't stop fighting for it, don't stop asking questions, don't stop fighting for answers, because they are definitely out there and persistence will get you where you need to be.
Speaker 1:Amen, amen, cheers Wanda or Ruth. And the second question is if there's someone listening right now, that's putting off chasing their dreams. What advice would you give them?
Speaker 3:oh man, don't give that up like all right that life is so short and even though the world can feel like a really, really scary and overwhelming place, and especially at the moment, um, that's very true. I think that there is so much good that is out there and there are so many opportunities waiting for you. Um. So don't for one second put yourself at the bottom of the barrel. Put yourself first. You know you need to be enriched in life. You need to have that purpose and that satisfaction. It's critical in in living a life. You know. Don't waste time in in worrying about the things that may or may not happen give it a go just give it a go anyway, and whatever falls out of it will fall out of it.
Speaker 3:But definitely don't be afraid. Do not be afraid to chase your dreams. Life is too short to be scared of everything all the time, and that's something that I know very well. Having a very bad panic and anxiety disorder is hard to get your head around but, it is doable and you can have a very full and enjoyable life.
Speaker 2:Absolutely. You're so wise, of course. Thank you for sitting with us today. It's been an absolute pleasure. Like I've, my jaw has pretty much been down the whole time because you've just filled my brain with so much knowledge so thank you from the bottom of our hearts for coming on and having a chat with us today.
Speaker 1:We cannot wait for this episode to drop yeah, we'll be sending it to a few people that we know, that is for sure. Absolutely yeah.
Speaker 2:Absolutely Well.
Speaker 3:Thank you, rach Is there any last words for our listeners today? No, just yeah. Thank you so much for having me on. I think the more people that can come on podcasts like this and talk about it, the better. So, definitely, I think the biggest message is yeah, keep having that conversation with your families, with your friends, with others, because, yeah, there's so much out there for us to learn and to bounce off each other. Amen.
Speaker 1:And this is actually a great episode for people that actually have teenage daughters that are going through period pain and stuff as well. So, yeah, because I feel like sometimes it can start in the home, with parents ignoring or just being like, oh, it's only period pain. So yeah, really good education. Thank you, honey, for coming on.
Speaker 2:Thanks for having me.
Speaker 1:We didn't even swear the whole episode.
Speaker 3:Wild Damn. We all didn't swear no. I know wild damn. We all didn't swear that. That's no. I need to redo the app. I know I'm a gutter mouth. How did we do it?
Speaker 2:I was thinking. I was like she hasn't sworn once what's happening here?
Speaker 1:board and bread in geelong, both of us as well, and we both didn't swear what the hell I was gonna say you've got.
Speaker 3:You've got professional Rach today. You don't have Bogan gutter mouth Rach.
Speaker 1:Oh, I love all versions of Rach.
Speaker 2:Well, thank you EWP listeners and have the most magical day.
Speaker 1:Bye, beautiful humans.
Speaker 2:Bye. We hope you feel inspired to take back your power. Thank you for listening into the ewp party. With jules and day, we want to challenge you to share this party with someone you love. Let's get all women involved. Follow us on insta at empoweringwomen underscore project, facebook and TikTok at empoweringwomenproject.
Speaker 1:We invite you to interact with us on our socials, our threads and in our DMs. We are open to collaborating and invite you to reach out if you feel inspired to be a guest on our EWP podcast. Remember, you are the creator of your reality. We encourage you to start believing in yourself and the magic of the universe.