Sharing Hard Stories: Endometriosis

Carly OsmanSo Chiara, I'm so honored that you're joining me today. And for anyone listening, this isn't a story that has a nice, neat conclusion at the moment. So I'm even more in awe of you a kind of opening up and being brave enough to talk to me about this. So before we dive in, I'd love to know a little bit more about you.

KyaraOkay so there's not much to know about me really. So I'm 26, work for a charity organisation that support older adults in the community. i absolutely love my job and alongside that I'm also a singer or I have been for many years.

Carly OsmanThank you.

KyaraAnd i have recently taken a bit of a step back just due to health stuff But generally speaking, that's that's usually my my hobbies sort of in in the spare time. But yeah, I'm i'm usually a very busy body as a person. I'm often always booked up in my schedule. However, this year I've decided to take a bit of a step back and just to allow some more time for myself, especially with everything going on. So... Yeah, there's not much really other than that i about me that's very interesting. and Obviously, you know, I'm on a bit of a whirlwind journey at the moment. So that's kind of, that kind of is my world at the moment. That kind of is very much who I am at the moment. So yeah, that's me.

Carly OsmanSo let's dive in there. So for anyone who is not familiar with the term endometriosis, can you explain what this means and actually how it impacts your life?

KyaraThe Okay, so I'm gonna do this as best as I can because even I'm not 100% knowledgeable about everything. So again, anyone watching, I might say a few things are wrong, but I'll tell you to the best of my own knowledge. So endometriosis is a condition where tissue similar to the lining of the uterus can grow inside the rest of the body in places that it shouldn't, and it causes severe inflammation. And the only way to treat it as such, because it is an incurable condition, is to have the tissue surgically removed, if possible, and also to be on some form of hormonal medication. This doesn't fix the problem. It just... kind of helps to maybe help the symptoms subside a bit. That's how it's supposed to help anyway. and Endometriosis is not just, you know, it's not just about periods. It's not just, you know, the the the the uterus and that area. It is very much a full body condition that affects everything. And it's not just the pain. There are so many other symptoms that come along with it. It's the chronic fatigue, it's the joint pain, the muscle pain, the nausea, the, you know, it's the constant inflammation and feeling like your body is fighting against you. there's There's so many different symptoms that come with it and every single person experiences a different journey. No two person's journey is exactly the same. There are four stages to endometriosis. and Stage one, they call is like the most mild and stage four being more severe. That does not mean that if you are stage one, that you have milder symptoms. That's not how it works. It's not down to pain. It doesn't mean that stage one means you have less pain and stage four means you have more. It's it's purely based on the spread and how much it has infiltrated certain places of the body. So if you are stage four, the spread is worse and it's infiltrated more areas. But you can have stage one endometriosis. I apologize, dog. You can have stage one endometriosis and still feel just as much pain as somebody who has stage four.

KyaraSo every everyone's symptoms are different and no two cases. It's very difficult for, any sort of kind consultant or gynae specialist to be able to, they can't predict how you're gonna feel. They can't predict what symptoms gonna have because they just don't know enough about it because it is a very unpredictable condition to have. And there is no sort of rule book or set way of how you're gonna feel. Everyone is so different. And I think that's what is very hard because a lot of the symptoms that we experience also mirror other conditions and often and very commonly it is misdiagnosed for other conditions and that's why the waiting list to be able to get a diagnosis is so long because there aren't enough healthcare professionals who know what they're talking about and know the signs of the right the right tests you know the right things to look for it's not something you find in a blood test it's it's a lot more there's a lot more that you have to go through in order to find it and often it does include surgery which the waiting list at the moment to even get a diagnostic laparoscopy are so, so long and they take forever. So yeah, it's, it's a difficult condition. and it's really hard to describe to people that don't have it because it's just almost impossible to to explain how you feel when you have it.

Carly OsmanSo what I'm hearing is it's it's all consuming. This affects every single aspect of your life.

KyaraYeah, absolutely. Yeah.

Carly OsmanSo you were recently in hospital and you got diagnosed with stage four endometriosis. Can you take me back to that moment and what were your initial reactions?

KyaraSo i I was admitted into hospital. I'd taken myself to the A&E at my local hospital. I had Gone into work as normal in the morning, didn't feel particularly great, but felt okay. And I can't even begin to explain the wave of pain that just came over me out of nowhere. it just It just hit me so quickly and it was so rapid, the decline, and I was quite frightened. So I experienced, I mean, I've always had bad symptoms anyway, pain symptoms, et cetera. One of the big red alarms here, hopefully it's not too much information for people watching. and I had severe rectal bleeding, which was very, very worrying. I've had it in the past, but never quite as bad as it was. And that already to me was a sign that something wasn't right. So I knew straight away i needed to get to the hospital. i called my partner. i said, we need to go to hospital. He absolutely agreed. I got to the hospital, I was in agony, in floods tears, could hardly stand. They could see how much pain I was in and thankfully due to my previous diagnosis, they knew probably what this was related to. They gave me some morphine, took me into a separate room around to the back and me and my partner just sat and waited for a while. And kind of just for a bit of context, I'd had an mr MRI previously back in November and I'd had no results from that MRI. This is a follow on from my previous surgery. So my first surgery was back in February of last year. and It wasn't, I was told initially that it was a successful surgery and that I had nothing to worry about. And it came to light eight months later when I saw the specialist that that actually wasn't the case.

Carly OsmanThank

KyaraAnd nothing had been removed. It was literally just, they'd gone in, diagnosed and come back out again. So he sent me for the MRI in November. I was then told I would get a follow-up and someone would be in contact to discuss the results. by just before Christmas, I'd heard nothing. And between then and when I went into hospital a few weeks ago, i had been chasing and chasing and chasing, trying to find somebody to give me these results. And nobody seemed to know the answer. It wasn't until then i ended up in hospital and me and my partner were waiting in that room that a gynecologist then walked in and told me that he'd seen my MRI results and it was stage four.

Carly OsmanThank

KyaraAnd i have never felt so broken in my life because I knew things weren't right and I knew that I wasn't feeling good, but I didn't expect it to be as bad as it was, especially with, you know, having the like the going in in you know, not so long ago and then saying that it was only at stage two to then jump two stages in the space of less than a year. is quite a drastic jump.

Carly OsmanThank

KyaraAnd I just didn't, I just didn't see it coming. I really did not expect for it to have gotten that bad so quickly. and obviously the first thing that went through my head was how does this affect me having children? Because for me, that is so important. I will go through hell and back if I have to, if it means that I have children, that is such an important part of this journey for me. And the first thing he said to me was, if I were you and you guys wanted to have a family, i would look into egg freezing or I'd be looking to try now because you don't have long.

Carly OsmanThank you.

KyaraAnd I just didn't even know what to say. i'd I was just blank and he walked out the room and I just fell apart because I was like, how do I even like respond to what you've just told me? like i just didn't even know in that moment what do. And I just remember looking at my partner and thinking, can't believe we're here and I'm 26. So that was really hard. And obviously, like, I'm just trying to process all this information. It's really difficult. So not much more was really said after that. It was kind of just me and Lewis sitting in silence and me crying. And and i was just kind of being a bit shocked, really. I think we were both just so gobsmacked by what he'd said. We just didn't even know how to respond. So... We waited a little bit longer. I was still in a lot of pain. The morphine doesn't really do a lot for me. So I'm just kind of laying there sobbing in agony, just found out there's horrible information. i want to go home. And they said, we need to take you upstairs. going to get you admitted this evening and get you on to some pain management. So they took me up to the ward and i I went up and I saw the gynecologist when I got up there and they said, look, you know gonna send you for an ultrasound an internal ultrasound we just want to check a few things and you know we'll we'll discuss what we're going to do moving forward And then it was kind just, I was in for just short of a week and every day I'd have the same team come to visit me. And we would, you know, discuss it took three days in the end to have an ultrasound done because the waiting list again was so long. So I was kind of just laying there waiting for this ultrasound. And we'd kind of discussed a few things. They managed to go through my MRI results with me. and showed me kind of where it had spread to, which was quite severe. i then had my internal ultrasound and at that point I was told that on top of my stage four endometriosis diagnosis, I also have adenomyosis, which for anybody watching them that doesn't know what that is, adenomyosis comes hand in hand quite often with endometriosis. And where endometriosis grows, you know, as a separate tissue on the outside of the organs, adenomyosis grows inside the muscle lining. So it's not actually something that can be removed without a hysterectomy. And that means taking all of your reproductive organs out. So that is something that causes extreme pain and is something that basically either have a hysterectomy, which I'm absolutely not gonna have at this age because it means it would stop my chance of having kids, or I kind of just learn to manage the pain and deal with it. That's where I'm at. So that was a lot to stomach on top of everything else. and It also makes your chances of having children a bit harder because obviously where it's growing on the inside of the you know off the muscle lining, it's not really creating a very good space for you to then be able to retrieve an egg. you know so Yeah, it's it's not ideal because of how severe my endometriosis has advanced to. One of my ovaries is now stuck quite far behind and back, so it's not in a very good position. It's affecting my bladder. It's affecting my so colon. It's affecting both my left and right US cells, which is your utero sacral ligaments. It's also affecting the torus and the pouch of Douglas, which sits behind your uterus. So it's quite, quite, yeah, extensive now. It's gotten quite, quite far around. It's found its way around. So there's a lot. There's a lot in there. And yeah, it's right now, it's kind of just figuring the out the best way to move forward, to make sure that this condition doesn't progress and to ensure that I still have that chance of becoming a mum.

Carly OsmanWhen you told the people in your life and your family and your friends, what was their reaction? Did they know what to say? Nothing.

KyaraHonestly, I don't think anyone knows what to say in that situation. i don't think anyone... It's really hard because... As someone who has endometriosis, it's really hard to describe to people around you what that condition is and what it means for your life. And that it's not just, you know, you wake up some days and you like, you know, you're going to know when you're gonna wake up and feel horrible and what day you're going wake up and feel fine. You just don't. And it does. It affects every single day of your life because you don't know how you're going to wake up and how you're going to feel and how the day is going to progress and what symptoms are going to be thrown your way. You just you just have no idea and you can't predict it. To then be told what I had been told, i think a lot of them were a bit like, okay, so what does this mean? Like, I don't really i't really get it. And it was me kind of having to explain to them what that means. And even then it was, you know... I have a very, very supportive family and very, very good friends around me. I have the most incredible partner in the world. I'm so blessed and so lucky. But even then you still feel really isolated in that moment. It's really hard because none of them get it. None of them 100% completely understand what you're going through. My mum is probably the closest person I have to kind of understanding that is within my like close circle. She suffered with adenomyosis for years. and went undiagnosed and had no idea what it was until she was later on in life. She'd obviously had our three kids and then she had a full hysterectomy to have the adenomyosis removed. So it was different to at the endometriosis. She definitely understands the pain levels that go through, but she still doesn't 100% understand it because she hasn't been through it. And it's it's really difficult to understand all the symptoms that come with endometriosis. and it's, it's hard. Like you do just instantly, you feel like you are so alone because you're just like, who, who can I, who, like, no matter how much I talk to everyone, they're not, they don't get it. Like they're just just not going to understand. And even I can't explain it fully. And I can't always find the words to to fully describe how I'm feeling, let alone explain that to somebody else. And it's really hard. And yeah, it's, it's, It's difficult. theyre They're all very, very supportive. And I won't not shying away from that for a second. I'm very, very lucky. But I don't think any of them, you know, they're all really trying to do their own research and to understand it and to watch videos and learn. But again, unless you're in these shoes, it is hard. It is really difficult.

Carly OsmanWas this feeling of loneliness the reason why you decided to actually publicly sharing, share your story? You'd gone from someone who has traditionally been quite a private person to, okay, I'm going to talk about this and I'm going to invite these conversations into my life.

KyaraYeah, so yeah, I think it kind of was, it in a sense, yes. i don't think I realised that was what it was for until after it happened. i don't think that was, I don't think I knew what I needed until until I was there, you know? The whole reason I started, the the whole reason I posted my story in the first place, so, there is a petition that i'm sure lots of people have come across by now and it is a petition that is that we are spreading far and wide to try and get as many signatures and it is to support women with endometriosis and getting egg freezing done by the nhs i obviously was told the information that i was and obviously was told that i need to look into egg freezing or having a family straight away. And then when I questioned that with the gynaecology team that came round, they then told me that I wasn't, I didn't qualify to have it done on the NHS, which made no sense to me because they were the ones who warned me and said, if I were you would have egg freezing, but then they're not there to support me to do it. So that was just absolutely baffling. and The criteria to have your eggs frozen on the NHS is so incredibly narrow. i know women who are in their late 30s and they're getting to that age now where, you know, they're sort of almost just before menopause.

KyaraAnd they, again, they're trying to have a family. They've got endometriosis and even they are not being supported. It's just unreal. And when I saw this petition, it just after everything I'd just been through, this was I think, I think I saw this petition maybe a few days after I'd got a home from hospital. And at the time, like the night before me and Lewis had been researching about egg freezing and how we'd go about it. and when we were researching seeing the prices that you have to pay to have this done i just the hope inside me was just dropping because i was like how are we going to afford to do all of this and where do we even start it just seemed absolutely crazy like i just couldn't even wrap my head around it all and then the next day this petition popped up and i was like has my phone been listening to me? Like, did it know I was doing this? so clearly the algorithms were like, you know feeding into it or whatever. But yeah, this petition popped up and I i read through, it was a another lady who posted the petition up and I read through her story and why she posted this petition and it resonated with me so much. And when I looked, I saw that it had been posted back in December, in the space of about two months or maybe just over, there'd only been something like 300 and something signatures on this petition. And I was absolutely baffled as to why more people hadn't signed this because I know how many women it affects. And I just felt this need to push it out there. It just, it hit home so much. And I was just like, this could be life-changing for not only myself, but for so many other women out there. We just, I had to get it out there. But I knew that if I just posted the petition, people wouldn't understand why and they wouldn't get it. And they just didn't, it wouldn't have, it wouldn't have created enough impact to be able to get the signatures in. Because I haven't been public massively about my story. People know I've got endometriosis, but not quite as how severe it has been and how difficult this journey has been. Because I just don't, it's not been something I have posted. And just knew that the only way for me to get it out there was to just take that leap and and just share it. And I was absolutely petrified. And I remember writing it and rewriting it and trying to figure out the the right way to put it out there to help people to understand. And I just got to a point where I was getting so fed up with myself. i so i just need i just need to post it and get it out there now and stop faffing around. And I did. And it was like overnight, the response that had come in, 48 hours, was absolutely insane. I cannot tell you how overwhelmed I felt by the response. It was crazy. And that wasn't just me. That was my partner as well that had shared that across his social media platforms where he has quite a large following. And he spent day day after day messaging people privately, sending the petition link to them, you know going through the comments and messaging people you know individually and privately and seeing who'd liked it and going through them and messaging them privately and getting them to share it onto their stories and pass it onto their friends. And it just created this huge impact so quickly that in the space of eight days, it had gone from 300 and something signatures to 10,000 signatures.

Carly OsmanSure

KyaraAnd it was so quick. It was crazy. And not only, obviously, is it creating this huge impact for the petition, but the messages that I received from so many women were were going through almost identical stories to myself, who, whether they were going through the exact same thing, a similar thing, they were struggling with their fertility, they were going through a really difficult journey, they'd felt the same symptoms and they didn't know if they had a condition. So many different people who had reached out just to be supportive and you know just kind of say like, you know this is my story. And they didn't realise how much of an impact they made on me. because I had felt so alone for that like two weeks and I was just in my head and not understanding how I was gonna get through this. And then this flood of love from all over the world had come in and I just, I couldn't believe it. I just, the amount of, it's such a weird bit of sweet feeling because it's like, you feel so understood and so seen and heard But at the same time, you almost feel really sad and really just a little bit of hurt that so many other women also have to go through what you're going through. It's a very, very strange feeling, but it has bought me so much comfort and I've connected with so many incredible women absolutely amazing women and I met up with the lady who had set up the petition very recently we went for a coffee and we sat in this tiny little coffee shop that I'd never been to and it was like we were sat across from each other and we weren't even talking and just in the silence like it was just like she understood I didn't even have to say anything because she I knew she understood what I was what I was going through it was like sitting in this bubble of I am hurting so much and I don't even know the right words to say, but I know I don't need to because I know that you fully understand. And that feeling is so rare to have that when you have been going through this for so long on your own and you feel so isolated in how you're feeling to then make a connection with someone that completely gets it is just unbelievable. unlike anything else, and it is the most incredible support. So if I can, you know, if there was one thing i could say to all these women that I've come across, who have so bravely messaged me and shared their stories of how they're feeling and what they've been through, It is take that leap and don't be scared to share it with the world. I know there are people out there who, you know, not everyone is going to agree with what you have to say. Not everyone has got, you know, a kind heart. And unfortunately, you're not always going to get a positive response. That is just social media. That's life. But. social media is great for so many things like this, like, you know, spreading the awareness, connecting with people who understand what you're going through and finding that comfort in other people that you didn't even know you needed. it's It's so important. and I just wish more. It is hard to take that leap and to be brave and to break through. But once you do it, it will change your life. It really will. And it's, yeah, it it it has for me. It's changed mine. And I'm so grateful. I really am.

Carly OsmanA So you're saying give yourself the permission to post and to share and actually the power of community and these forged connections that come together with these like-minded nothing like it.

KyaraAbsolutely. No, it's we are our biggest critics. We are so self-critical, all of us, of ourselves. I've been there. I get it. so I'm still there. I know it. Like I'm, you know, it's things, not even just this, not I'm not just talking to women out there with endometriosis. I'm talking to women who have had all sorts of struggles, whether they've been through their life and they've had issues with their periods or they've gone through fertility problems or, you know, they have been through body confidence problems, whatever it is, all of this feeds in. I've been there and I felt it. It is so hard going through where your body is constantly changing in ways that you don't want it to And you're having to adjust and adapt to a new body that you don't 100% love and you've almost fallen out of love with completely you start to completely reject yourself you just don't want because you're so angry at yourself that your body's not doing what you want it to do it's like this feeling of you feel like your body's almost like betraying you because it's not functioning the way that you want it to function. And especially as women, we naturally, you know, we are taught that as we grow up, like, you know, we're supposed to get married and have a family and be a mum. And for some women, that's not their calling. And that's absolutely fine. You know, some women don't want children and there's nothing wrong with that. Everyone's completely different and everyone's entitled to their own lives. But there are also a lot of women out there who really do want children and they have that maternal instinct and it's really hard. And when your body's not providing the way it should, you can't help but feel annoyed at yourself and feel angry and and i know i'm guilty of it too and i know i shouldn't be and i know there's others out there that will be but you almost feel like he it's your fault because you know especially if you're in a couple already and like with me and my partner i can't help but feel this this tiny bit of guilt that it's my body that's not working for us and that hurts a lot And I know I shouldn't feel guilty because I can't help what I'm going through and it's not something I can control.

Carly OsmanThank

KyaraBut you you still feel that way. And that's that's normal and it's okay. But you just, you have to try and remember that it's not your fault and it's not, you you shouldn't be blaming yourself for what you're going through. it's it it sucks. It really does. And like there is no amount of words to be able to describe the hurt that you feel when you're going through fertility issues and you really want to be a mum. But just try and focus on, you know, all of the good things that you can do for your body. i think that's where my mind my mentality now has completely switched. I was so focused on all the things that my body couldn't do for so long because it is really hard and it's, it having to accept that is is difficult. it's It's one of the hardest things you'll ever have to do. bar what I'd forgotten about was all the things that I could be doing and what my body could do. and it was like trying to adjust my perspective and start feeding into how can i make my body feel better?

Carly OsmanThank you.

KyaraNothing's going to cure how you're feeling, nothing. And the pain is is likely to always be there. but I have made small lifestyle changes. Like I have upped my hydration. I have i stripped my food intake right back to very, very bare, bland, awful, boring food, which is not good for a foodie like me. but it meant that I could start the process of slowly introducing things back in, which takes time. But you only have one body and it's worth doing. And then by slowly introducing things, you start to realize what's causing the flares or what's having and a reaction or what's making me feel really low or really rubbish or giving these these particular symptoms. And it makes such a difference. And it's, I'm i'm such a strong believer you know, your body, you have to treat your body like a temple, you do. I'm not saying you have to go out and live a really boring life and never have fun and never go out for food with your friends or never go out for drinks or have fun or whatever. But for people who are struggling with with these issues, your body is forever under stress. And often what we do is we either like, eat to try and calm ourselves or we go out and have drink or we do things that probably aren't so great for our body that again you know try to take that stress away but you're not actually releasing that stress you're just holding on to it and finding way to mask it and that that's not healthy either and your body if it's under a lot of stress and a lot of pressure it's not going to respond to you the way you want so

Carly OsmanYou

KyaraObviously no one can relax in these situations. I know that. I'm fully aware and I'm not saying that it's that easy and it's a case of clicking your fingers and you'll forget about everything. It doesn't work like that. it doesn't happen overnight. It's a long process and it takes a lot of time. But what I am saying is, by making small changes that make you feel better in some way, you'll start to notice that eventually your body starts to relax a little bit more. And actually, weirdly enough, I mean, don't get me wrong, i'm I'm still in constant pain all the time, but certain symptoms, especially for those who have endometriosis, you'll know about endobelly, it's like really, really bad symptoms. sort of swelling in your lower stomach and feeling really bloated and your stomach you look like you're pregnant weirdly enough which is quite ironic that feeling that i've had for so long is slowly not so bad it's there but it's not half as bad as it has been and i am noticing changes and i'm not feeling as puffy or as swollen or whatever it is and it's it's not going to like said it's not going change overnight it takes time but

Carly OsmanYeah.

KyaraIf you can make small changes to your body just to make yourself feel better, things that make you feel good. That's what you want. You want to be able to you know find ways to make yourself feel good in a really rubbish time. What can you do for yourself that's going make you feel OK? You know, what's gonna make you feel a little bit better about the situation, which is already awful. And it's finding whatever that is, whatever it is that brings you joy or brings you comfort and is good for your body, do it. If you feel that one day you wake up and you can't move and you feel absolutely exhausted, that is fine. You don't need to justify yourself to have a day of rest. There's no, don't have to explain yourself to anybody. That's you, that's your body. You're listening to yourself. and if your body's saying, I need a rest day, you need a rest day. If you wake up one morning and you feel, do you know what? I actually feel okay today Make the most of that time where you feel okay, because it's so important. It's rather than living your life and feeling like every second is is rubbish and it's crap. It's... finding a way to make the most of the times that are better and focusing on those positive moments and finding that community that are going help you feel that way more and build you up in those times where you're feeling really low.

Carly OsmanYou

KyaraIt's is's so important having good people around you that understand what you're going through and There are so many women out there and I know that because you've all reached out who have been feeling the same way. And I feel like it's important that we're all connecting with each other because everybody needs someone. Everyone needs someone to hold their hand and to help them through. And we can all do it for each other. We're all there to lean on each other, regardless of your situation, you know, and that's, that's what's important is having those incredible, strong, wonderful females around you is so so important and we all need it. All of us.

Carly OsmanAnd then on that note, now you found your voice, are you going to look to build a community that brings these women together?

KyaraI am, yes. Obviously, my head's been a little bit everywhere over the past few weeks, and I keep going to record videos and then backtracking. We've all been culprits of that before. So, you know, it's just sometimes it's hard to know what to say in the right way and knowing what message i'm actually trying to get out of there. So, yeah, that... It's definitely the making. The page is already created. It has been for about 10 months. Have I done any anything with it as of yet? No, I haven't. But this has given me the motivation to push that page out there because there are things that we can all teach each other. And just having that sense of community of women that need, you know, that can reach out to each other and know that they're there and understand that are like-minded, it's just a really lovely thing to have. Obviously the long-term goal would be amazing if we can get, you know, events set up where we bring these women together in person from all over the UK or over the world if they really want. And, you know, we bring them together and even if it's just as small as going for a coffee or, you know, just just sitting in a room with women who understand what you're going through, like i said, you don't even have to say anything. You can just be sat in that silence. but knowing they understand is one of the most comforting things in the world. And if I can get it to a point where I build that community and get these women actually together to meet each other, I just think it we are so much stronger together than we are on our own. And I do think that if we can bring those people together and us women together, then we can push for anything. We really can. So yeah, that's, that's the goal.

Carly OsmanAmazing. Well, thank you,

KyaraThank you for having me. It's been an absolute pleasure. i really appreciate you. and Yeah, just, just inviting me on and having me here and, and I hope that whoever does see this, they, I hope you find some comfort and if you ever need anything, my Instagram is always open. So yeah, pop me a message and I'm happy to happy to get in touch.