In this Episode, Cass talks about her battle with Endometriosis, from what endo is, how it's treated and what society needs to do to support women living with it.
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Transcript:
What is up everybody and welcome to another episode of The It goes without saying podcast it is me cast your host. And today we are going to talk about endometriosis and women's menstrual health. So yay, a super fun topic. But it is a topic that is definitely needed. And it's not talked about enough, which is why I really want to get into it today. So what is endometriosis? The definition from endometriosis.org. It says endometriosis is a condition in which tissues similar to the lining inside the uterus is found outside the uterus and can cause an inflammatory reaction. And it has also been found on the pelvic floor, the ovaries, the recto vaginal septum, the bladder, the bowel and as far up as people's diaphragm and in their lungs. So let's just pause for a second and think about that. The tissue that is supposed to be inside of your uterus can be found inside of your lungs. That's insane. And just think about what is that doing to your body. So we're gonna talk about it. I've heard about endo a lot in my past 10 years through the chronic illness community. But it took me a long time to really put the pieces together. So I always knew a lot of people that have chronic illness, end up with endometriosis, which I thought was weird, comes by not inflammatory disease, you have chronic illness, the inflammation yay, they love each other. And there's like a 60% chance that if you have one chronic illness as a woman, you're going to end up with endometriosis. So we love that stat, good times. Another fun stat is that one in 10 women actually have endometriosis. So if you are in a group of 30, like 30 Women at a party or whatever, at least three of them are going to be having endometriosis problems.
And I don't know about you, but I think that one in 10 is a pretty staggering number. And the fact that there is no cure, and it's not talked about a lot is a huge problem. So that's why we're here today. So back to how I got into the endo sphere. I had always heard about it in my support groups, there was a lot of women that I knew that would bring it up and talk about it a little bit, but I just didn't fully understand. So I first got my period when I was in sixth grade. And it was always really, really bad. It was always really heavy. Like immediately right away. I remember I literally had to go to the bathroom every 30 minutes and change my pads and things could bleed through them at school. And I always had a ton of pain. There were times when I legitimately was crawling across my hallway in my house because I physically could not stand up because my cramps were so bad. I remember one time my dad came into his room because when you were sick in my house, you always want to eat my parents room because they had a cute little chairs in a TV little living room in their bedroom that we were just sit in when we were sick. And when I was on my period, I often had to miss school because I was in so much pain I physically could not walk. And I was laying on my dad's chair upside down with my legs in some like weird contortion position. And he was like, What the hell are you doing. And that was literally the only position that I could sit in, when I wasn't in pain. My periods are so heavy that I would bleed through an ultra tampon in 20 minutes at times, at nighttime, I would have to sleep with the giant diaper pads. And I would bleed through those bleed through my towel i was sleeping on breathe through my sheets onto my mattress. And this happened to me about every three weeks because that's how often I got my period. So for most women, your cycle is about like every you get your period once a month. For me, I ended up getting my period, like twice a month. So nobody ever really told me that wasn't normal. And when you talk about when girls even talk about their periods with one another, it's always just like, oh, yeah, like I have a heavy period or I have cramps. And that's about it. Nobody really tells you, your cramps aren't supposed to be so debilitating, that you can't walk or you can't go to school because your cramps are so bad. I didn't find that out until years later. So here I was getting Lyme treatment, having horrendous periods and I finally was put on birth control. Because the main reason Believe it or not, I was put on birth control was not because I was having horrendous periods, but was because of my Lyme rage that I was having because I had emotional problems from Lyme. So they put me on birth control to handle the emotions, not because my period was insane, which is actually funny in hindsight. So I ended up being on birth control for a while and when I was on the pill birth control, I still got my period but this time it got my period more regular so I had it once a month, but I still had the heavy bleeding and the pain. So I dealt with that for years because nobody told me that that wasn't normal, and wasn't until 2019 When I interned with the mighty. So I think I've talked about the mighty before but the Mighty is like my chronic illness Bible. I love it, everyone should use The Mighty. And I was lucky enough to have an internship there for a semester. So I was a chronic illness intern. And the main topics that I worked on happen to be Ehlers Danlos Syndrome, which also a lot of life people have, and endometriosis. So I was tasked with writing stories, I would send out the weekly newsletters to these people that had these illnesses that use the mighty and things. And while I was writing stories about endometriosis, I was getting information from people that actually had it hearing their stories. And I was like, holy shit. I think I have endometriosis just looking at their stories. And everyone was the same with my period was so frequent. My period was so heavy, I had so much pain, nobody told me that you weren't supposed to be having this much pain when you were on your period. Nobody believed me. And so I started questioning it. I did more research on it. And I went to my gynecologist and I asked them, I said, Hey, I think I might have endometriosis. And it was a super awkward conversation for me because I'm not a doctor. And I was like, don't you think that my doctor should have been telling me like, this could have been a possibility?
Oh, pause for a second before this happened. So my period was so bad. And my pain was so bad that my gynecologist had prescribed me a pain medication that I was only allowed to take for like three or four days in a row because it was so strong, you were not allowed to take it for longer than that. And you were only allowed to use it when you were on your period. So they were literally prescribing me a super, super high powerful pain medication for my period, instead of being like, hey, maybe there's something else causing this pain. So Anywho. Now we're back to, I had to bring it up to my own doctor instead of them bringing it up to me. And so I asked her if we could test me for it. And she said, Well, I don't really like to do the test for it because it's a surgery. And I just don't really want to have to put you through that. So normally we just treat it and see if that helps. And I was like, okay, sure your The doctor will just listen to you, I guess. So they ended up putting me on the Nexplanon, which is the birth control on your arm. So once I got the Nexplanon in, I did not have a period for two and a half years, which was super awesome, because I wasn't having the period wasn't really having a lot of the cramping pain. But then I still ended up having all of the bloating issues. And I also have found out along the way of this journey, that I also have what they're calling pre Crohn's disease to so I've always had a ton of issues in my stomach area and in my gut. But I know my body well enough now that I can tell when my bloat is coming from my Crohn's when it's coming from something that I've had to eat, or when it's coming from my uterus, I call it everyone knows that's close to me knows I'll be like my uterus pain. Or I'm having my like uterus bloat, I call them two different things because I can tell when the Bloat is coming from there or when it's coming from somewhere else. So we ended up treating me through COVID, actually through 2020, for all of my parasites, and finally got my gut in order. And I was still having the lower belly bloat, and my uterus pain, and it just wasn't getting better. And it would be so strange that I would be standing up at work when I worked at Orangetheory. And if I had to teach three classes in a row, by the time I left there, my stomach would be bloated to the past, it looked like I was like six months pregnant. And I always say that and people are like, oh, you can't see it. You're so small, whatever. But I can feel it. I can feel it expanding and that pain is so bad. And I like to say to people, I'm like I just wish that something could just hold my belly up, because it just feels like I have this pressure that's just pushing down. And I can't do anything about it. It hurts sometimes to even wear pants or have anything pressing on it. I ended up getting a rash it's called arrhythmia AB Igni. Because I use my heating pads so much. They're like I sleep with my heating pad on or I used to sleep with my heating pad on because the pain coming from a uterus was so bad and it just wasn't getting any better. So I finally talked to my integrative family medicine doctor Dr Seyedan, and she was just talking with me and she said I think that it's when you really need to get the surgery done. Because everything else is getting better except for this issue. So we need to find out if it is that actually endometriosis. or if there's something else going on, because at this point, I had a tentative endo diagnosis. But I did not have any definitive proof because the doctors hadn't done yet. So I went back to my gynecologist, and this was in March or February of 2021. And I had to fight with him to get him to do the surgery. I explained to him my entire history, the pain that I had been having. And he just kept saying, well, we like to treat it. And I just like the surgery as though and I was like, no, like, I literally had to stop him from speaking, I was like, I have done everything else, everything else is getting better. Except for this, I would like to have the surgery to find out if this is what is causing my pain, or if there is something else. And so he reluctantly agreed. But just think about that for a second. Here I am. At this point, it's been over 10 years since I've had a period. So 10 years of pain, and heavy bleeding. And just think of all the money spent on the birth control on the pads, the tampon, just insane things. And I'm having to sit there and fight with this doctor, first of all, a male doctor telling me that my pain isn't valid. And that what I'm experiencing is just normal when I know from 1000s of other women that it's not normal. And I had to fight for him almost in tears to give me a surgery to find out for real if this is what is causing my pain. I just it's insane when you think about that, like no one should have to do that. So flash forward to April of 2021. And they finally do the surgery. And lo and behold, I wake up from the surgery. And I in fact had endometriosis. They found it. He said that they removed it. And I thought I was going to be great. So through my research, there's a lot going on surrounding endo treatment. So there is no cure definitive cure, they say for endo. But with the laparoscopic surgery, they can go in and they can execise it, which is remove it. But there are some doctors who still do the old fashioned way, which is ablation, which is basically they just burn it off. And a lot of women end up having an ablation surgery, and then end up having to have other surgeries because that's not the proper way to do it. When you do an ablation, it can grow back. And in fact, it normally grows back worse for a lot of people. So I messaged my doctor before my surgery and I told him I said I just want to make sure that we're doing excision not ablation, because I know that that it can cause a lot of issues when they do ablation. And he had told me that yeah, they were going to do excision, and that was that. So after my surgery, it took me a lot longer to recover right away. So they said that normally it would take a couple of days. But for me like right after my surgery, I want to say it was at least like two weeks before I felt okay, again, I couldn't wear pants. Um, I literally bought like a night gown and I ended up having just to keep rewatching this night gown, because it's all I could wear and I had to wear the mesh underwear from the hospital. Because literally anything touching my incisions or anything touching my stomach hurt really so bad. So my incisions are right underneath, like where your underwear line would be right by my hit points. And then I had one inside my belly button. I didn't know right away how I was going to be feeling endo wise because I was having to recover from the surgery. But I slowly started to feel a little bit better and more like myself and things. Except for I had pain. We're going to get to know each other now people. I had pain in my actual vagina. So it hurts so badly. And I just didn't understand why and it was it hurt to walk it hurt to Jack would not jump oh my god, trying to jump was like the worst thing ever. I couldn't run. I couldn't hold a plank. So imagine at this point, I'm still coaching at Orange theory right now. I could not coach essentially to my greatest abilities because I was in so much pain that I could not do a lot of basic movements that people are able to do. And I was so confused because I had always heard from women that had endo about the internal pain. That's what I call it the internal pain. And I had never had that. So I was like, Oh, I'm so lucky. Like I know women who they literally could never use a tampon because even putting a tampon in that hurt them so badly because of their endometriosis. So I was always thought I was so lucky that I didn't have that pain. It also was why part of the reason why it took me so long to accept that maybe I did have endo because I didn't have that pain. But now after my surgery, I was all in pain and I was so confused. I ended up going back to my gynecologist I mean like Hey bro, this was like a month after the surgery. I was like I am having so much pain. I like can't Do anything that it's like it's hurting my function in life right now, because I can't work the way I'm supposed to. I love to exercise, I can't lift heavy things, it hurts so badly. I literally couldn't do anything. And he was just like, well, it might just take a little bit longer to heal. And at this point, I, he didn't know this, but I had already made an appointment with a pelvic floor therapist, because I know some women in my life who have gone to them and had success. So I just thought that that was what I should try to do next. And so I brought that up to him. I was like, Well, what about pelvic floor therapy? And he was like, yeah, maybe in a couple weeks, if it's still not better, maybe that might be a next step. I can help you find someone if you need one. And I was like, Okay, I actually already like know, somebody I can go to if I need to. So at that point, I was pretty much just done with that doctor. And I was like, Alright, he's useless to me. He's not going to help me I have to take matters into my own hands. And I've pretty much been the in charge of my health. With my Lyme For the past 10 years, I have been my own doctor at times, because the doctor all gaslight me and didn't believe me. So I didn't know that I was going to have to do this endometriosis. But here I am. So I started doing this pelvic floor therapist. And she is absolutely amazing. I love her to death. And I started seeing her probably in June, or July and 2021. And I have been there still, I still go to see her. But I am so much better than I was. So she explained to me the pelvic floor which I'm a woman, I have a pelvic floor, I knew absolutely nothing about it, because they don't teach us about them. In school, we're going to get into that in a little bit. But I didn't even freaking know what my pelvic floor was. So she starts working with me on all this. And I literally had this like nothing could go inside. Like I still had my birth control at this point. So I wasn't getting a period. But if I was I would don't know what I would have done because I literally could not put anything in there at any sort of fashion. So therapy, that's what they do. So that was a lot of fun. But I've been working with her for what is it like nine months now I'm bad with numbers, but I am able to run again, I'm able to jump, I can do plank, sometimes I still get pain where I can't do things like I can't do lateral movements. So your pelvic floor is attached to like everything is attached to muscles in your legs, your hips, your stomach, and everything is attached to your pelvic floor. And so I can't move my legs laterally still like doing a lateral lunge or sumo squats or things like that, because it pulls a little still and causes me pain. And I'm almost one I'm almost a year out from surgery now, which is just insane. So I didn't have those issues from the actual endo anymore. So I wasn't having the bloating or the pain. But I was having now this new internal pain. So it was kind of like a trade off. I got rid of that kind of pain. But now I had a new one coming in. And it's just crazy to me to think about I just like just think just the whole just blows my mind. I had this surgery, found out that I had the endo that got a little bit relieved. But now I have this new issue on top of it. So it's just like, once again, if you're Cassidy, you get one thing, you get them all and it's just insane in the brain. So the reason why I have the internal pain is that during the laparoscopy surgery to find the endometriosis, they have to put basically a giant mechanical arm inside the vagina to rotate the uterus around,
so they can find where the endo could be hiding. And when that happen, my muscles on my pelvic floor basically had a Oh snap, we're being invaded response and we have to protect ourselves. So they all tightened. And now they don't know that it's okay. And they can release and relax. So I'm basically having to retrain all those muscles that they can relax. So that is why I have the pain and what I've been working on for the past nine months or so. So from here, I started doing a lot better with the pain and I internal pain and things like that I was able to do a lot of the things that I actually like to do again. And then a few months ago, I started getting the bloating again. And it's kind of a different bloat pain, but not really. And it's still especially like if I'm standing up for long periods of time my stomach bloats after I exercise every single time every single time without fail after I run my stomach bloat sometimes I have to stop running because my stomach is bloating while I'm doing it and it hurts so badly. And so I'm seeing pelvic floor therapist and she starts to think that I have something called pelvic congestion. So with pelvic congestion, it's basically like you have varicose veins in your uterus and the blood is not flowing in the right directions. So right about this time I had been talking with Dr. Seyedan on about my birth control and stuff because I had been on birth control for over two and a half years. And in Chinese medicine world, and I just think the world in general, like not getting your period is not natural. At least this is like my opinion, like you're so your body is supposed to bleed, it's supposed to let it all go. And it's also like not even just the physical aspect of the bleeding of like the shedding of the uterine lining, but also just getting rid of a lot of toxins and things like that. And my body had not been able to for two and a half years. And also, you can tell a lot about a woman's health based on her period, blood, and things like that. And like they're different colors, or different thicknesses, and textures and things like that, that mean a lot of different things to people that understand them. I don't actually understand them a lot, but I do know some about it. So everything else was going really well except for this issue still. So it took a lot of time for me to accept it. And I was terrified of it. But my doctors thought that I should get off the birth control for a little while and see what happens, see if it helped my pain, see how things were going. And the day that she told me that I was at an appointment before going to school. And I got into my car. My mom was in a meeting and wasn't answering her call, my sister was in a meeting so she couldn't talk to me, my best friend was at work, so she couldn't talk to me. And I had a full blown panic attack in my car because of the trauma of my past periods. Like I just, I never want never wanted to have to deal with that. Again, I never wanted to have to be like crawling across the floor, in tears in pain with nothing able to help me and literally going from ovulating on my period ovulating on my period, because before I got the birth control, and that is what my period was I was literally most people are only bleed one week out of the month. I did not bleed one week out of the month. And every other week, I was bleeding, that I became anemic, I was so sick, because my periods were so bad. And so I just had horrible, horrible anxiety about having to get my period again and stuff. But I also knew deep down that I needed to do this to see where my body was right now too, because what my doctor kept pointing out to and what my mom kept saying is, I was in such a bad place. Before I got put on the birth control, just all around, like I had just been getting paralyzed. And I was still really sick with all my Lyme issues and stuff. And I was doing so much better now. So it would also be interesting to see how my body is reacting now. So I ended up getting my birth control taken out I think in October of 2021. And that was really scary. But I did it. And I was also scared at this point, again, because I was still having the internal pain that I was like, Oh snap, what happens if I get a period, I'm not gonna be able to put a tampon in, what am I going to do? Because I was so nervous about all that. But my pelvic floor therapist also really wanting me to get off the birth control and get a period because when you are on your period, your pelvic muscles are working differently as well. So she wanted to see if that actually helped with my pain. So it was all around just like a big consensus. This is what our next step should be. So here I am now and I have gotten my period a couple of times they have not been anywhere nearly as bad as they used to be at all. They last maybe for like four days. And I My pain is so much better. Now. The internal pain is better. Now I only have to go to the pelvic floor therapy once a month if that. And the only issue that I'm still having is I still get the bloat. So I ended up going to a endometriosis specialist. So there are gynecologists. And then there are some gynecologists that are specialized in endometriosis. They actually know the proper removal techniques. And they know that it's real. And I found one that is near me. And so I went and met with her in December. And she does really think that it might be endo still that they didn't get it all when they did my first surgery. So at this point where we are is I'm kind of just having to live with it and find ways to make it not be so detrimental to my way of life. Because I don't think that my body can handle another surgery right now because I'm still recovering from my first surgery. So at this point, I'm kind of just waiting it out and doing whatever else I can to calm it all down. So using my integrative doc, the pelvic floor therapy, all these techniques that I'm learning, and working with some somatic healing and things like that to try to just make it more bearable, I guess. And it definitely is better at times. So when I'm on my, when I'm actually on my period, I don't get it, which is so weird to me. So I thought that it would have been worse. But it's actually when I'm ovulating that it literally just feels like from my belly button down is on fire all the time. So that's fun, love those weeks. But that is where I am right now with my endometriosis journey. So at this point for me, I want a hysterectomy. And I have been saying that I wanted I just want them to take it all out, probably for like five years, I just keep saying I want them to just take it all out, I want them to take it out, they won't take it out. So I know that that's probably something that I will do down the line a little bit because they won't do it. Because I'm so young right now, that's kind of where I am right now just in a sitting waiting game, figuring out how it all works in my life. And I'm going to make it work. I guess that's kind of what I have to do. Because that's just the way our society is set up right now. They just don't. Women's Health is so taboo in our society. And we're not taught about these things. It's actually interesting that this past semester, I was in a health communication class. And my group did an entire project on menstrual health hygiene, which was so crazy, because I was going through all this at the time. But what we found out is that it's just not taught about to us in school, like I remember learning about periods once or twice in school. And that was about it, they don't really go into detail. It's never taught about any of these other issues that women can experience. And like the pelvic floor, and that's not talked about at all the functions of that, like ladies that are listening to this, did you know that it's not supposed to happen when you jump, you're not supposed to leak? I didn't know that. And I don't know if that happens for every woman. But I know, pretty much all the women in my family have leaking issues. And that's not normal. Apparently, that's some deficiency with your pelvic floor. And that blew my mind when I found that out because we just kind of talk about it and walk it off and laugh it off. Or did you know that you're not supposed to be in debilitating pain from your period cramps, that that's not normal, it's not supposed to make you miss out on work, or miss out on school. That's not normal either. But we're not taught about these things. And we don't know to talk about them like that, because they are so normalized in our society, that when I sit there and talk to my friends about that, they'd be like, Yeah, my cramps are really bad too, because they have bad cramps too. But they don't know that that's not normal, either. It's just, they don't, we're not allowed to talk about these things. So that is why I am here talking about these things. And I'm sorry, if it makes you uncomfortable to talk about periods and vaginas and things. But hey, it's all natural. Half of the world's population has them. And we need to talk about these things because they are so detrimental to people's health, Women's Health is not put in the forefront in our society. And I think that that needs to change. And the way we change that is by talking about it and sharing stories like this. There are so many other women out there that have stories similar to mine. A lot of women have stories that are worse than mine, the pain that they had to go through the suffering, the surgeries, the Miss diagnoses. And I'm so lucky that I was thrown into the chronic illness community that I had all these other resources around me that helped me find this answer. Because I don't know what I would still be doing right now. If I was dealing with all of that pain and suffering still. It's just crazy to me that we have to live with this. Endometriosis is wild, and the damage that it can do to people. I know I talked about it before about how it can get into people's lungs. And I actually know someone who has Endo, and it caused their lungs to collapse. And it took years years before doctors figured out that was what was going on. The doctors don't know enough. And if the doctors are the ones that are supposed to help us, how are they supposed to help us if they're not taught about these things either? If they don't know what the symptoms are, if they don't know what to look for, if their first thing is to just medicate you with a pain medication that is so strong. You can't take it for more than a couple of days. No, that's not how this world is supposed to work. So I'm going to put some links in the blog with this video. about endometriosis, some great organizations that are doing a lot of work to help women with Endo. And I encourage you to check it out. And I encourage you to also be more open about your issues that you're going through whether it's menstruation issues, whether it's mental health issues, whatever it is, the only way that we are all going to get equitable care and actually have healthier lives, is if we are open about all of our struggles with one another. And I know that it's super uncomfortable, but that's why I'm here to destigmatize it a little bit. So if you ever need to talk about any of those things, you know where to find me, so I always end every episode with a song recommendation. So today's song recommendation is God is a woman by Ariana Grande. Go and listen to it. Find your inner Diva and I will be back soon with a another episode of the A goes without saying podcast. Bye
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