Endo Battery

Breaking Barriers: Fisayo Thompson’s Journey with Endometriosis & Advocacy

• Alanna • Episode 113

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In this episode of Endo Battery, we sit down with filmmaker Fisayo Thompson as she shares her powerful journey with endometriosis and the cultural stigmas surrounding chronic illness. Through her documentary Walking Through Walls, Fisayo exposes the systemic failures in healthcare and the critical role of advocacy in raising awareness and building community.

What we cover:
• Fisayo’s path from early symptoms to diagnosis
• Cultural taboos and the silence around menstrual health
• The impact of misdiagnosis and medical gaslighting
• How Walking Through Walls is shedding light on overlooked stories
• The urgent need for better-informed healthcare providers
• Why validation matters—especially when “you don’t look sick”
• The power of storytelling in fostering change and collective healing

Tune in for an insightful conversation that challenges the status quo and empowers those navigating endometriosis and chronic illness. Don’t forget to subscribe, share, and leave a review!

Website endobattery.com

Speaker 1:

Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own. Believing that open dialogue helps us grow and gain new tools always align with our own. Believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights. I'm your host, alana, and this is IndoBattery charging our lives when endometriosis drains us. Welcome back to IndoBattery. Grab your cup of coffee or your cup of tea and join me at the table Today.

Speaker 1:

I'm thrilled to welcome Fasayo Thompson, a filmmaker, director and producer dedicated to telling powerful, untold stories. As the creative force behind Walking Through Walls, fasayo uses her platform to shed light on the realities of living with endometriosis, something she knows firsthand. Her journey with endometriosis began in her teenage years, but, like so many others, she faced cultural taboos, misdiagnosis and systemic healthcare barriers along the way. Through her documentary, she not only raises awareness, but also advocates for a better education, improved medical care and open conversations about chronic illness. Beyond filmmaking, fasayo is a passionate advocate working to create resources and support for those affected by endometriosis. I am so excited to have her here to share her story, her work and her mission.

Speaker 1:

Please help me in welcoming to the table Fasayo Thompson. Thank you, fasayo, so much for sitting down at the table with me today. I cannot express just how grateful I am for you for sitting down with me, and how excited I am for you to share your story and for others to hear your story. So thank you so much for taking the time to sit down with me, thank you. Thank you for inviting me.

Speaker 2:

It's great to finally be here and have this very important discussion with you, so thank you for having me. It's great to finally be here, you know, and have this very important discussions with you, so thank you for having me on the platform.

Speaker 1:

Yeah, it's a complete honor on my part, and when I first heard your story, I was so impacted by it, because your story has little pieces that everyone has experienced, but when you put it all together, the picture is just. It all together, the picture is just. I am amazed by your grit and by your perseverance and compassion. Still and I think that was something that, walking away from learning more about your story which we'll get to in just a second that I admired the most is that, beyond everything that's happened in your journey, you still hold an immense amount of compassion for people and for yourself, and I think that was something that I took away when we initially had spoke a while back offline is that you still held compassion for yourself, and I think that takes an immense amount of grace, maturity and growth to happen. Can you tell us about you and your story and why this is so meaningful for people to understand?

Speaker 2:

thank you my story started. I'd say officially 13, but looking back at it it was definitely, you know, before then you know, but I, I know people usually, and doctors and um articles usually say, oh, endometriosis starts with first monarchesis, which is your first period. But for me it didn't. You know, I was in junior secondary school and my mates were beginning to have their periods. You know, mine hadn't come yet, but there was just this crazy pain, you know, this pelvic pain and back pain that I had now and when we you know young girls would gather and talk about periods. You know, have you started? Have you started? Have you started? In oh, this kind of conversation, I said no, I haven't started yet, but I have the most horrible, you know, back pain. Well, one thing you know that I realized was that I didn't tell my parents. You know, back home then you know my parents, they had a bit of a turbulent marriage at the time, so I didn't want to add my, my issues or my troubles, you know, to it. So I just kept thinking, oh, I'll be fine, you know, pop a panadol and and all of that, you know. So I managed that for a couple of years I had a period and then one day, during after school club, I fainted and that was it. I'd say that was the official beginning of all of this, of my journey.

Speaker 2:

I remember, you know, then we're talking with my friends and comparing, you know, our periods and how we feel. I used to have the worst pain. There was me and two other friends who now also have their diagnosis of endometriosis. I connected back with them and it was just this constant back pain.

Speaker 2:

But I'm originally nigerian and talking about periods is quite the taboo, or at least in my time. Then you just don't discuss it, you just don't talk about it. You know, you deal with it yourself, you know so. And because we don't talk about it, it's not spoken, people just whisper about it. You know, if you know, if you have a best friend there was nothing to that, I didn't have anybody to talk to, to confide in. I just knew that every period was horrible and I'd always flood. So I used to. I remember, you know, always carrying a cardigan on my and I'd have blood trickling down my legs and I'd, you know, try to rub it. You know, and not try, you know.

Speaker 2:

So I had the worst horrible period and I remember asking a friend who you know, who started periods for me. I said when is this period going to stop? And she said my mom said menopause. And she said my mom said menopause. And I said when is that? She said when you're 50. You're like, oh, my goodness, I'm 14, is this gonna continue to 50? I need to lie down and die right now, honestly.

Speaker 2:

And so every period and ovulation I remember then like clockwork. It was two weeks before my period and during my period I'd always faint and I had to be taken to a hospital and it progressed so much it was like every two to three days I was in hospital. It was clockwork, all the teachers knew. The teachers would say Fisayo, wait, let me finish teaching before you faint. And I screamed the building down Everyone near Fusayo has come again.

Speaker 2:

You know they say come on, it's just periods, manage. No, I can't manage, my back is killing me. And I think in my culture maybe it was just a Nigerian thing at the time they say only pregnant women and elderly people have backaches. So why are you having backaches? Are you pregnant? You know?

Speaker 2:

But I didn't want to say it's not just the back ache, it's my stomach, it's my pelvic. You know, I've got pelvic pain as well, until my family doctor said I realize you're always here on your periods and two weeks before your period I said yes. He said do you have tummy aches? I said yes, I have really bad pain, especially, especially during my period, and he just said hmm, and that was the end of that conversation. Wow, and he didn't say anything. You know, he checked, checked here, checked there, physical exam, and that'd be the end of it. I had a permanent bed in the hospital. There was a bed that wasn't given to any other patients because I was constantly in the hospital, two, three days in the hospital. It was that bad throughout secondary school and I wanted to be a doctor. I don't know if I ever said this.

Speaker 2:

No, you didn't tell me that yes, I always wanted to be a doctor. So I went to, you know, I was a science class and, um, I flunked out. Basically I couldn't keep up because there was a time I was out of school for a month plus almost two months. So by the time I rejoined they did the screening test. I failed miserably. I was failed miserably and I remember, oh, the brain fog too. And second option was art, because I also love the creative. So I went to art and well, yeah, thank god for, for the career I have now.

Speaker 2:

But it's just crazy. You know how my journey has been, you know, and the fact that there's little to no um education on menstrual health for, for young kids, for teenagers. You know, but I think you know that is getting better. But in our time, knowing in in the 80s, 90s, 2000s, there was barely anything, any information you know to to go by. And I didn't hear the word endometriosis till I was, I think, about 29, 30, you know thereabouts. And it was just crazy the way I, the way I heard about endometriosis, I'd complained.

Speaker 2:

By this time I already had three girls, three kids. You know all very horrible, horrible pregnancies with hyperemesis. You know I survived. You know the childbearing years, but the pain wasn't, you know, with every pregnancy. And finally, you know, I went to this. I've been passed around. You know hospitals, all the to this. I'd been passed around. You know hospitals, all the department. I knew the hospital like the back of my hands. I knew every room in the hospital and they said no, neurogine, gyne, this, that psychology, blah, blah, blah, blah, blah, blah.

Speaker 2:

And finally I ended up in front of this doctor and she said oh, I'm sure you don't have endometriosis. That was the first. I said oh, that sounds like that, sounds serious, what's that? And she said oh, don't worry, that's okay, you don't need, I'm sure you don't have it. I said, but I want to know what it is, because you've said I'm negative for everything else, there's nothing else. So if there's something, can I be tested for it? And she said I'm sure you don't have it. Black women don't have. It is a rich, white women's disease. Wow.

Speaker 2:

And I said I have never heard of a disease that has the sense to target rich women. How do you know your host is rich? How do you know she's white? How do you? I've never heard that before. I said okay, what if I'm the anomaly? What if I'm the, the black woman? They, you know, they, they square peg in a round hole, you know right, and we test for it. And she said, oh, I'm sure you don't. I said, but can we test for something? She said, yeah, okay, let's test, let's do an mri. And that was the beginning, you know, of my journey. And I've lived in three continents. Wow, you know, I've lived in nigeria, I've lived in grenada, in the caribbeans, and I've lived, you you know, in London. So all these doctors, all these years, all this misdiagnosis, and no one thought it was endometriosis. It was crazy.

Speaker 1:

Which is crazy too, because your husband is a physician. So it's not like you didn't have this other component to your story and it's you know, I think, that a lot of us struggle to get diagnosed and who struggle to understand our disease. But when you're either a provider or you have a personal relationship with a provider, I'm sure that had to bring up some questions for you guys, but also it maybe changed the face of advocacy for him and for you.

Speaker 2:

Oh, absolutely, yes, absolutely. I remember, you know, moving from Nigeria to Grenada, my husband worked as a lecturer at the medical school that you know. He was a tutor and and the doctors generally if you, if you're married to one or close to one, they they write exams almost throughout their career because you know they have to climb up in Ohio and if you want to work in another country there's exams. So I remember being in so much pain and reading for his exams and I'd say open, can you read through your book and see if you can find what is wrong with me? And he says something is at the back of my mind, like I don't know what it is, but something is almost clicking but not clicking. I don't know what it is, but something is almost clicking but not clicking. I don't know what it is, you understand. And when I finally heard the word endometriosis, I remember driving back home I just had to park and I called him and I said dear, have you ever heard of endometriosis? The doctor said I don't have it, but that's probably the only last thing. And he said oh, my goodness, endometriosis, oh, yeah, it fits the bill. And I said what? Are you serious? You know what endometriosis is. He said, yes, they just measured it once.

Speaker 2:

In medical school they teach them about hundreds of thousands of diseases and conditions. And this was just, it was an elective class, so you didn't have to attend. And it was just, it was an elective class, so you didn't have to attend, and it was just mentioned as a rare disease. And the way they're taught in medical school is, you know, when the patient comes in with this set of symptoms, there's something called differential diagnosis. So it's most likely this is second, most likely, that is taught. Most likely, this, you understand, you know. So between the first and the only mentioned it in person. So they weren't prepared. And this is one of the things I advocate Now.

Speaker 2:

It's not just advocating for the public and women to know about endometriosis, it's another thing and very important to advocate for the medical community to know endometriosis. You understand, and this is why I'm very wary meeting a new doctor, because I have to be the one to explain what is endometriosis, because even I was married to a doctor that I didn't know, my, my cousins. I come from a family of doctors, my godfather is a doctor, I'm surrounded by doctors and none of them thought about the condition called endometriosis? None of them. So now I've had to go back to all of them my physiotherapist, who's done physiotherapy for years, to say, hi, I finally got a diagnosis called endometriosis? None of them. So now I've had to go back to all of them. My physiotherapist, who's done physiotherapy for years, says, hi, I finally got diagnosed with endometriosis and he said, oh, what's that? Oh, that's rare, oh really, okay, it makes sense, you know. And now everybody says, oh, sorry, we really didn't know. We never really thought it was rare, we didn't think you'd have it. You know that sort of thing.

Speaker 2:

So it's really changed the face of advocacy for him as well. You know, because he says almost on a daily basis he sees and diagnoses endometriosis patients. So women coming from many other doctors maybe you know. Second third opinion and he could tell that's endometriosis. Even if you come in for a kidney issue or liver issue or cardiac or whatever part of your body, you can say you know what I know? This is endometriosis is not a gyne disease, like other doctors say. And he tells his mates he says don't look at it as a gyne issue. If a woman comes in with with a problem in any part of her body and the site is worse during her cycle. Endometriosis, think endometriosis before anything else.

Speaker 1:

You know, and I'm very glad that dr ken cenevo mentioned that in the in the documentary yeah, yeah, and let's talk about the documentary, because you created this documentary, which I sat back and watched in awe of everything you've been through. But the things that you tackled in your documentary weren't just for you. It was looking at the systemic issues surrounding endometriosis, the training issues surrounding endometriosis, and it walks through your story figuring this out and, man, it was so good. It was so good because it gave voice to a lot of the experiences that many of us have faced, and whether that's you know, seeing a doctor who didn't believe you or felt like ablation was the only option or medical management was the only option, and that you know that we shouldn't have the choice in how we approach our care. I think all of us have had that experience at one point or another. But you just put it into film. Tell us a little bit about this film and the process to do that and kind of what you experienced walking through doing this film.

Speaker 2:

Oh, well, I'd say, what made me do the film? People ask this question and it's for a number of reasons. I remember one time I was watching, just watching TV, and I think it was Kelly of the now defunct Destiny's Child mom, early on, and she said, you know, in the interview she said she was beginning to forget her mom's face. There about, you know, and that young children who lose their parents, you know, for example, maybe their mom, it gets to a point, you know, in your adult years her face, you know, begins to blow. And at that point I was at the height of the pain, everything I felt, like I was literally dying, and that really scared me Because at the time my kids were very young and I just looked at them in horror and say, excuse me, if I die today from this disease, you mean to tell me my kids will probably forget what I look like, you know. So I said, well, I need to keep something for them. Okay, maybe I should just begin to record things so that they can watch, you know. And then I also thought, okay, when they grow up, god forbid I die from this how would they know I? I fought. Well, you know, I fought to stay alive. I fought to keep them, I fought to be their mom, to to really do you understand. I didn't want anyone else to tell my story. I wanted them to see this in in pictures and in videos. You know keepsakes, you know memories. So I said, okay, you know I'd start, you know, filming day to day my struggles so when they grow up as adults, you know they can, you know they can remember this.

Speaker 2:

And also, every time I saw a doctor and I explained my, my symptoms, they didn't believe me and it was always frustrated. They always said, oh, but you look good. How old are you? Oh, oh, really, you're a mom. You look so young, you look too young to be a mom. And I said, okay, yeah, well, I've got this problem.

Speaker 2:

And they said you don't look sick. There's always that you don't look sick, your symptoms sound terrible, but you look good, you stand you. This is you, I can see you. You look beautiful. You look young and beautiful. You don't look like what you say you are. Are you sure, you know? And so there was that gaslighting, to be honest, you know. And they did say, um, okay, maybe you know painkillers or something, but I'm not sure it's as bad as you say it is, you know. So I said, okay, maybe you know next time I'm going through it, next time I'm having sure it's as bad as you say it is, you know. So I said, okay, maybe next time I'm going through it, next time I'm having a flare up, I record it and then show it to the doctor so that they can see me. I say, okay, this is me, of course. When I'm seeing the doctor I have my bath, I dress well, nobody wants to look terrible, yeah, you know.

Speaker 2:

So I recorded those videos also as evidence to say see, this is me when I'm really bad, when I'm in pain. This is what I look like, you know. And also I remember when I typed, you know, the first time I heard about Novitriosis. Immediately, you know, I went on Google. Then I went on Instagram, you know, I typed Novitriosis and I saw so many things and so many women who were sharing their stories and something just clicked in me At that time, you know I'd turned down.

Speaker 2:

You know I'd turned down, you know, many jobs. I work in the film industry and I couldn't work because I couldn't give my best, you know, and I'd lost my career, basically, and I I just thought to myself these people, women with endometriosis, they're talking about this, you know, but I think people don't know how bad this is. But we know that show, you know, seeing is believing, even pictures, don't lie. You know what, if I get all these pictures and videos and make a film or something out of it so people can see and not just read about it? When you see it, you believe it, you know. You know, like show, show and tell not just tell, but show it as well.

Speaker 2:

And then, you know, that's where I reached out to a couple of people. I discussed with my husband, you know, are you comfortable with this? You know we're quite conservative people. But I said I was at the point where I didn't care anymore. You know, there's this thing, this Nigerian, or should I say African thing, where you know you celebrate your wins but people keep quiet on their struggles, keep it, and say, oh, just keep it in the family, keep it, you know, and solve your problems yourself. You know, don't expose yourself. But I didn't care. Everyone was looking at me, you know, at trip, every time I go to the hospital. So I didn't care at that point. I just wanted people to see and believe and help me.

Speaker 2:

And I said, you know, if my husband is okay with it and he was from the guest we say, yeah, do what you need to see how bad this thing is. People don't believe even him when he tells them how bad it is, you know. So that's how, how we started. I said I don't know where this thing is going, but let's just continue. And I started with my phone. I'd film things, I'd speak to camera. Trust me, I think we only use maybe 10, 20, 20 percent of the entire thing I filmed got terabytes, yeah, but it was, you know, when I okay, let's make this a film, let's let people see it, you know. So if people see my story, then they can believe our story, our collective story. And that's how I began. And I didn't even get the name for the film.

Speaker 1:

To the very end, I just kept thinking which I love the name of the film, which is walking through walls, because that is literally what it feels like. It feels like you are walking through walls to get care exactly I'd come back.

Speaker 2:

I came back from from an you know yet another appointment, you know, and I was being told it must be psychological. You know, I think you really, because I always declined mental health, because I knew from other people's women's stories that once you get into that mental mental health department you weren't going to take it taking serious, you'll be flagged as a mental health patient and it's good to seek mental health. But I kept declining it and said no, this is physical, is physical, this is 100% physical. And I remember venting to my husband saying you know the whole story, you know everything. Everywhere I go in this hospital, everywhere I go on this journey, it's just like walking through walls and something just clicked in my brain. I'm like, excuse me, that sounds. That would be the name of the film.

Speaker 2:

And he said, yeah, it sounds good, and that was how we got the name of the film.

Speaker 1:

It's so applicable to not only your story but so many of us just based with navigating this health care system anywhere you are.

Speaker 1:

I mean, it doesn't matter where you're located, endometriosis in any, any healthcare system is a challenge. So it literally feels like you're not just walking through them, but you are rammed against them, sometimes, where it's like it's an unbreakable barrier to receiving care. And I think that's what was so impactful when I was sitting there watching it, thinking to myself wow, you had more barriers than some, and I think one of the barriers that many of us don't experience is the extra pelvic piece of your story, which you've had multiple surgeries and you have thoracic endometriosis as well, and so you're walking through a lot of different barriers. It's not just pelvic pain, it's extensive, extensive disease, and so for someone like you that has more of a challenge with very advanced disease. I'm sure that was hard to walk through. Can you tell us a little bit more about that, because I mean, we saw it in the film a little bit, but that was only a snippet of what you've experienced in your journey.

Speaker 2:

Yeah, so as science form, you know, dealing with pelvic endometriosis and having multiple surgeries, I realized that every time I had, you know, pelvic pain, I had pain in my chest as well. So on both sides of my chest it was more on the left than the right. And I remember, you know, reading from I think it was extra pelvic, not rare, um, dr wendy bingham, she's done very amazing. Yes, you know, I read all about. You know all the sites. When the juices can be found you can find in the chest. I say, yeah, yeah, exactly, you know. If it can be found anywhere, why why not the chest? You know, and I remember when I was, I think, I traced my, my chest symptoms as far back as 17, 18. It could be earlier than that, but I remember, you know, I was doing a diploma in French and every time I had my periods I was like I couldn't breathe. You know, I was breathless, I couldn't breathe. And then, you know, I'd get rushed down to the clinic and be told, oh, maybe it's panic, or open your windows. And then finally, I got a misdiagnosis of asthma. My best friend was asthmatic at the time. In fact, all my best friends, coincidentally, had asthma and my mom said oh, you finally contracted this asthma. And I said no, it's not communicable, it's not infectious. And you know, I got an inhaler, I used it. It wasn't working. In fact, it just made it worse actually. And I said I don't think it's asthma. And the doctor said have you noticed? You always come, every month, every month, when you're on your period, you come for your chest, you have chest pain. I said yes, do you think they're both related? He said I don't know, I don't think so. Well, you know, period just messes up a woman's body. So you find just feel different things, different ways. But yeah, just continue using your inhaler. And that was 17, 18. And I continued.

Speaker 2:

But we put so much attention on my pelvis, but my chest, and I kept thinking how am I going to tell my people that it's not just my pelvis, it's my chest as well? Something is wrong in my chest. Every time I laid down to sleep, I just felt like my lungs was filled with fluid. I felt drowning. I kept telling my husband I'm drowning. Every time I lie down I'm drowning.

Speaker 2:

And he said God, for Christ's sake, where do we go with this? Okay, see a doctor, see a lung specialist, ask to be referred. So I went there, asked for a referral. I'll be told, oh, it's very rare, it's almost impossible. I said, well, if it's in the pelvis, well, the chest is also in the body too isn to in it, you know, and it's an old body disease, you know.

Speaker 2:

So I kept pushing, you know, for, for, for, that you know. And then I was offered zoladex, said, oh, you know what, you know, my doctor, my guy in there, then said why not just go on zoladex? If you do zoladex you just clear all the endometriosis. Well, I read that. No, so zoladex is not the treatment and it's not the cure. But I kept pushing.

Speaker 2:

I said something is wrong on my chest, especially, you know, on my left. So you know, I read up on. You know pelvic, I mean extra pelvic injuries, especially diaphragmatic. And I had all the symptoms and even more. You know the shortness of breath, the shoulder pain, the pain running down my arm. You know even my heart, the palpitations, everything I said, my heart, the palpitations, everything I said. Well, I think I'm a classic case. We really need to look into this.

Speaker 2:

And my doctor said you know what, let's focus on the pelvis. You know, there may be the chest. But, to be honest, nobody's going to do anything or operate on your chest unless you're at the point of death, and that you know. That really rang in my head. Like what? Like you mean you're not going to do anything at the point of death? He said yes, so let's focus on your, said well, we have cardiothoracic surgeons, don't we? Can they not do it? He said no, they're not trained to do that. We don't even know if you have. It's too risky. Nobody's going to go into your chest because you suspect endometriosis in your chest. I said well, you know, we faced a lot of barriers with my pelvis. I think we should go into my chest. And you know what? I'm just going to look for a surgeon who will say yes to going into my chest cavity.

Speaker 2:

So I went on Facebook and typed in thoracic endometriosis who's done surgery? Who has it? You know I started reaching out to people here and there. Then I wrote a list of doctors, narrowed it down and contacted them the doctors. So you know I was discussing with both of them at the same time. You know, can you do my pelvic and the rejuvenation excision and my chest and my diaphragmatic as well, and can you check my lungs as well. It's very important because I keep drowning, something is wrong and even when I breathe, you know, you can hear, you know that sound, you know in my breath, you know. And they said yes to it. So I walked with both of them okay, let's see which one's going to go fast. Because at that point I was racing against time. I kept telling my husband I have that feeling like I could die very soon if I don't get on that surgical table.

Speaker 2:

So, yeah, went to Romania. Pelvis went well, but the chest not so good. They did. They did an ablation rather than an excision and that's very important that I put that in, you know in the film and even you know in the run-up to it that excision. I know we always hear excision is better than ablation and we know that experience is not the best teacher right, you know.

Speaker 2:

And to to advocate for excision over ablation and still fall victim to an ablation was very disappointing for me. I really beat myself up for a while. I said what could I have done? I told this man, I suspect I have endo here, but I will only do excision. Can you do excision? He said yes, I'm a professor. I said okay, professor Kadil, thoracic excision please.

Speaker 2:

So, going on that and I waking up and I didn't see any one of them, I woke up from that surgery and I didn't see any of the surgeons that worked on me. They all traveled out immediately. I got my surgical video. It was from my surgical video I saw that they burnt me. They did an ablation instead of an excision. I reached out and they said oh yeah, we did our best, take ketamine injection twice a day for the rest of life. I'm like nobody's going to give you that kind of injection in the uk and I can't take injections for the rest of my life. You should have excised right now. And that brings me to the question of what can patients do to make sure that surgeons keep their end of the bargain?

Speaker 2:

yes yes, another, yes, another important question yeah, yeah. So when I, you know, I went to India last year to see Dr Mangs, I said excision, not ablation. He said no, I do not ablate, I will do an excision. I said you better keep, yeah, his excision. Yeah, and he did a great job, an excellent job.

Speaker 1:

Yeah, something I loved about your film is the fact that it is kind of open-ended, because your story is not done, and I think that a lot of us walk into surgeries, like you said, hoping that it's kind of the end of that road or the end of that storyline. And I think that, to be realistic, not everyone is going to have a blossoming ending. You know that romantic ending of the happily ever after.

Speaker 1:

You know, and I think we have to be realistic in this disease it's not just about our stories, it's about the capability of this disease and for some people, you know, after they have excision and they seek out proper treatment, it is great. But there are people that will struggle because of the repercussions of the disease potentially, but also like their bodies are, are like hubs for endometriosis, right, and and I love that your story isn't finished in a way because it's realistic in in the film, not that I love that you have to still go through the things that you do.

Speaker 1:

I don't want you to hear that, but that you're painting a realistic picture for so many people and I for myself you know I maybe don't deal with as much of the endopain aspect of it, but there are repercussions of living with this disease for so long and having so many different surgeries and having so many other things, other comorbidities, that accompany endometriosis, and so it's good for us to have that in our minds when we are seeking care, that this is step one and if it goes great it'll be thrilling. But if you set that expectation so high that it's going to be roses after and then it's not, it is so hard on your mental health and your emotional health and everything else because you have this high expectation and this dream of it all being normal again. Whatever normal looks like for someone right, and when it's not, it is so hard. What has been your experience? Walking through that from surgery to surgery and still struggling? At times it's been heartbreaking.

Speaker 2:

I don't know if there's another worse word to explain that, but it's been very heartbreaking.

Speaker 1:

If this part one kept you captivated, come back for part two of this episode with Vasayo Thompson. It only gets better from here, and you won't want to miss it. Until next time, continue advocating for you and for others.