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Period Story Podcast, Episode 77, Natalie Meagan-Blake: Advocate For Yourself

My guest on today’s episode of Period Story is Natalie Meagan-Blake. Natalie so generously shares her story and if you think you may have endometriosis, adenomyosis or fibroids, I encourage you to listen to this episode. 

In this episode, Natalie shares: 

  • Why she decided to be so open about having endometriosis, adenomyosis, PCOS and fibroids
  • How opening up created a community and safe space for people to talk about their experiences and learn how to advocate for themselves 
  • How long it took her to finally be diagnosed and the impact of race in this 
  • The impact these conditions have on her fertility and how she’s tackling this 
  • And of course, the story of her first period

Natalie says that advocating and speaking up for yourself is never a bad thing and that you should never be scared to ask for a second opinion. 

Thank you, Natalie! 

Get in touch with Natalie:

Instagram

Sunday Sip Live Events 


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SHOW TRANSCRIPT

Le’Nise Brothers:          Hi, Natalie. I’m so happy to have you on the show today. You have quite a big story. There’s a lot going on and we’re going to get into all of that. But first I’d like to start by hearing the story of your very first period.

Natalie Meagan-Blake:  So I was nine and I was so upset. I just came on at primary school and we were just about to leave to go for swimming. And swimming is, Swimming is, that’s my sport. I was so upset, crying and everything, but I didn’t really know that much. I didn’t really know anything really that much about it. But the lead up to that, I was having a lot of excruciating pain and stuff, and I think my gran just thought that I just had a stomach bug, so she didn’t really think, oh, she’s going to be starting her period. So yeah. Then obviously I got sent home, so my gran was just in shock, you’re only nine, and I was just like, yeah. But then my auntie on my dad’s side, she started at a young age as well, so she was just like, okay.

                                    She taught me about pads and how to put it on, but then I was throwing up. The bleeding was so heavy. It was so heavy, and I had, at that time, I even had massive clots, not to know, and my grandma wasn’t to know that that could be a sign for anything. And the excruciating pain I was in and I bled for 10 days. So my first period I was bleeding for 10 days. I had about 12 to 14 days of no bleeding, and then I started bleeding again, and then it was like another 10 days. So it was every couple of weeks I was having a period my gran took me to the GP and was just like, for her obviously that’s not normal. Every couple of weeks a 9-year-old is having her period and she’s throwing up and then she’s not eating, and the flow is just really heavy and it’s all over the bed and my clothes. And at that age as well, it was scaring me. I’m thinking, am I dying? Why is there so much blood coming out of me?

                                    And then not eating and not sleeping properly, and then missing so many days of school as well due to that. And the GP told my gran, oh, this is normal. Just because she’s just started, it might take a while for it to just regulate and it’s just going to give it a few months. If it doesn’t regulate, then come back. And then, because at that age, they didn’t want to give me any medication or anything like that. They just gave me, I think it was a liquid form of paracetamol at that time, something I can just put in my mouth, my gran would just do that for me. Then it was just hot water bottles and I would have to have that so hot that obviously all my skin would go red and that stuff just showed up. It just looked like massive, massive red blotches all over my stomach and I would have really bad headaches. So really bad migraines. I was really sensitive to light and I feel I was also dehydrated as well a lot because I was throwing up so much and then I wasn’t replacing because anything that I was putting in that was coming back out again, I would have the runs as well. So all experiencing all of this at the age of nine was a lot. So that’s the shorter version.

Le’Nise Brothers:          So you’re nine years old, so that’s year five, year six?

Natalie Meagan-Blake:  Yeah, something like that. Yeah.

Le’Nise Brothers:          Yeah. And you’re missing school. You’re having these very long, very excruciating, very heavy periods, and I wish I could say that it surprised me that your doctors said what they said, but it doesn’t surprise me, especially you think now, if you knew what you know now back then, how that early diagnosis could have made such a difference. Can you talk a little bit more about the impact that the heavy, long and excruciating periods had on your schooling, your friendships and your mental health at that age?

Natalie Meagan-Blake:  I think obviously at that age I was unaware. I think I was upset a lot, didn’t understand, but I was just listening to what my gran was being told who then in turn my gran was listening to what the doctors are telling her. And I think obviously with that as well, it was just, I don’t even know. It affected me a lot as in I missed a lot of school, I would say throughout the month, I was home at least two weeks out of the month because of the pain and that. Then, like I said, I loved swimming, so I would miss out on going swimming because at that time I wasn’t using tampons or anything like that. It was just pads and the big thick ones. And then I’m walking around with that as well. I feel like I’ve got a nappy on and I’m not a baby. Why have I got to wear this big thing? But I would literally have to wear two of those. So it’s coming all the way up the front and all the way because it would just flow and just go everywhere. And this was the days before wings, I don’t think wings were even invented then. So obviously the pads would go in and then it would get on your knickers and then I’d feel uncomfortable. 

And then I felt like I couldn’t speak to anyone at school about it because I was told to be quiet about it. And then also, I didn’t know anyone else in my class if they started their period, even though I wanted to ask, but I was told to be quiet, you don’t talk about it, just say that you’re unwell. You just caught a stomach bug and that was it. So I was always told never to speak on periods, never to speak about period pain or what I’m going through, from a young age.

                                    So that was embedded in me from then. So the only way it really affected friendship is time lost with spending with friends and having conversations with friends through primary school and secondary school. I felt that it affected my emotions a lot. I could be really angry one minute and then really happy go lucky another minute, and I really didn’t know how to navigate that and I didn’t understand what was going on with my body, why my emotions would fluctuate so much and why I was just all over the place, why my belly would look so big one minute and then another minute it would be really flat. I used to dance as well, so I used to do tap ballet and all of that, and it would really affect me through dancing as well. And I felt really heavy and I can’t move as much, and the teacher would be like, oh, what’s wrong with you? And I’d be like, nothing. It goes back to that conversation from when you was in primary school. You can’t talk about your periods, you can’t talk about your underneath. As my grand would’ve said, you need to keep stumm. So I suppressed a lot of feelings and emotions due to that because of what was told to me when I was younger. So I’d never openly spoke as much as I do now.

Le’Nise Brothers:          Yeah. You are incredibly open on social media and I think you’ve helped a lot of people through sharing your journey. I just want to skip ahead a little bit and talk about that because you were told to keep it quiet, don’t talk about your underneath, and now you’re so open and there is a stigma in Afro-Caribbean communities about talking about periods and menstrual health and sex and all of that. There’s just so many taboos. Do you think it was a cultural issue or can you just say more about why you were told to keep quiet about what was going on with you and how you were able to transition away from that kind of thinking to the openness that you have now?

Natalie Meagan-Blake:  I think so I was raised by my gran who came from Barbados, so she’s obviously got that old school way of, she’s been raised that old school way and then obviously then I’ve been raised like that. So from whatever she was taught from when she was young about keeping quiet about things, she’s then embedded in myself. And I find that within our culture as well, whatever happens in the home, stays in the home. You don’t talk, there was this, it’s like what you see here stays here. What you say here stays here was at home up on the wall. And quite a lot of Caribbean households had that saying in their home. So I feel like that was like a, I could be wrong, but it was like a rule or something that everyone followed, but a lot of the homes followed these same words and then obviously that’s embedded into your children. So when you step out of that front door, you don’t speak about anything. You don’t share family business, you don’t share anything about yourself. Don’t bring no embarrassment and no shame on the family.

                                    You just go out, do what you have to do. And when you come back home, if then you want to talk at home, then do so. But then sometimes speaking to even some family members, it is just about, sometimes it’s just like, oh, I don’t want to hear it. Or it’s like, well, just suck it up. Be strong. You are a strong woman, it’s only pain, it will pass. You just deal with it now, take what you need to take in and you keep it moving. Some households, they might have had those conversations, so it wasn’t so much of a hard upbringing, but I feel as well with mine, I just feel like my gran didn’t know. She didn’t know anything other than women have periods and we all have pains, go to the doctors, give you some medication, you take it, that’s it, done.

                                    It is as simple as that. And that’s what I feel that back then a lot of people followed that. Even now, I still think some people do follow that, but I think now the conversations now are starting to be had. And for me, I felt like because when I was diagnosed I was like, I need to speak to someone and someone that also looks like myself that can relate and come out of that box, which I struggled with because I was told, why are you doing this? Why are you talking about your underneath? Why are you sharing your business? You’re not meant to talk your business outside your front door. And I’m just like, well, I need to connect. I need to talk. It’s messing with me. I feel alone.

                                    I just need to share with someone who understands what I’m going through. And I did find a community, but I didn’t connect with them. So then that’s when I took first to, it was first to Facebook and I shared and I met one of my friends who I didn’t even know, obviously she didn’t know that I had, and we’d be out partying with each other and not know that we’re both going through the same thing. It’s only when I then spoke about it, I started getting all these messages like, oh my gosh, Natalie, I can relate to you. I’ve been diagnosed with this as well. So I found that with me opening up, it created a community for people and a safe space for people to come and speak to me and especially when they knew me already, and then it would be like, oh, my friend has, do you mind if she contacts you because she really needs to talk? And then it just went from there and I was like, this is needed and this space needs to be created within our community and know that it is okay to talk about stuff outside your front door. And yeah, I think that’s…

Le’Nise Brothers:          Yeah. Can you talk a little bit about the impact, the work that you have done that you’ve seen on others because you also now have your Sunday Sip events where you bring those with endometriosis together to connect and to learn. Can you talk a little bit about the impact on other people and also on you?

Natalie Meagan-Blake:  Well, for me, it’s created a safe space for myself and that connection with people in person connection other than just in the groups and social media. And sometimes you need a hug and getting that hug, just that hug, no words need to be said, just that hug. You can just feel that understanding between two people. And so I am getting goosebumps even talking about it. It is just an amazing feeling and I felt that I just wanted people to meet other people in person, and at least if they network with one person, they then can find a support system, someone that they can go and speak to meet up for coffee, or if they’re having a bad day, they can have that conversation with someone just from the event. And also to help encourage people to advocate for themselves when you are going to these appointments, helping people have that voice, encouraging people to have that voice or when they’re going go into these appointments and being shut down to know that you can get a second opinion to provide information and advice whether they take it or not.

                                    And people can relate to in-person stories as well, and it helps them not to feel so alone through what they’re going through. So me creating Sunday Sip, which it wasn’t called Sunday Sip before, I had a couple of events before and then rebranded, I just felt like, yeah, this is needed. Some people have gone on to do amazing things from it, and it’s just been helping them just to do lives, just come to the event and speak. Some people they spoke for the first time and they were like, oh my gosh, that has helped me to exhale so much. I just feel like I just release and now I feel like I can speak, I can go into these appointments and I feel a little bit more confident with what I’m going through and how to manage what I’m going through and how to speak to a doctor instead of just being silent in those six minute appointments. So to hear that and to have that feedback and just to see the smile and everyone interacting, it’s just like, I’m like, yeah, this is a good thing and I just need to keep it going.

Le’Nise Brothers:          You talked a lot about advocacy, so helping others advocate for themselves and also self-advocacy. Can we just rewind a little bit and talk about your diagnosis, and I should unfortunately say diagnoses because you have several conditions, you have fibroids, you have endometriosis, you have PCOS and you have adenomyosis. So can you talk us through the diagnosis journey for each of those conditions?

Natalie Meagan-Blake:  So as I said, it was college and I was struggling a lot and I just knew that there was something wrong. So I went to my GP and I was like, look, my periods are really heavy. At that stage I was bleeding for two weeks and I was doing a sports course, so obviously doing sports and believed in so heavy and the pain was struggling with my studies. I’ve tried so many different medications. So my GP was like, I need to refer you to the gynecologist. So I was just like, thank you. And at that point I changed doctors as well because I felt like my doctor before wasn’t listening to me, so I asked to see someone else. And this doctor, she was absolutely amazing and she was like, you are too young to be going through this and you’re struggling with your studies, we need to help and support you and see what’s actually going on with you. So I was like, thank you so much.

 So I was referred and I had scans done. I had a lap[aroscopy] then, and this was then going into my early twenties, and then I was diagnosed with PCOS. And then from that I was just told by the gynecologist, oh, you are young, you’re going to struggle to get pregnant. You need to get pregnant as soon as possible because as soon as you start hitting your late twenties, early thirties, it probably will be impossible for you to get pregnant. And I was like, what is going on? No, this is not happening. And I was like, I can’t. I’m sure I’d just booked a girl’s holiday around that time as well. So I was like, that’s not happening. I’m single. You’re just making me want to go out there and just go and get pregnant.

                                    I was like, no. And they were just like keep taking your painkillers and that was it. And then I was just left. So I was just given painkillers for ages and I was on the Celeste pill as well. Then I came off the pill because I just felt like it wasn’t helping me. And then they tried me on different pills and then my body was just all over the place. I started coming out with loads of spots and all of that, and then I was just like, no, this is not working for me neither. My period was the same and I kind of just left it. I actually did. Then I didn’t know any better and I left it, and it wasn’t until I met my partner and then we was just like, well, if we fall pregnant, we fall pregnant. So this was going now into my early thirties, so it’s been like 10 years, but it’s been 10 years of me going back and forth and being put on this medication. Let’s try this for six months. Oh, if that doesn’t work, then try this. Then it was like, no, then try these pills. Oh, if this pill doesn’t work, then try that. So all that time I was doing it. I was just going through the motions of taking all these different types of medications and then saying as well, there’s something going on. 

I think I did have two gynae appointments, but they said that they didn’t see anything. So it wasn’t until my early thirties that I went to my GP and I was like, look, I’m not saying I’m trying to get pregnant, but it’s not happening. My periods are like this. I dunno what’s going on. Then I wasn’t listened to for two years and then I changed doctors within that. So it was my fourth GP. So imagine through that time I just kept changing my GPs and then when I went into that appointment, as soon as I started seeing some of the symptoms, he was just like, I think you got endometriosis.

                                    And then it rang a bell because I had a conversation with my mum and she said that she’d been diagnosed with that. So I was just like, what is that? She’s just like, oh, it’s just painful periods. So she wasn’t even told that much information herself. So then when I then went and had the gynecologist appointment, they said they could see some stuff on the scans, but I need to have a lap[aroscopy] to find out more. So I said, okay. Then I had that laparoscopic surgery and when I came out of that, I was told, she then said to me, I’m not qualified to do the amount of surgery that you need done. She goes, you are riddled with endometriosis. You have got organs stuck together and I need to refer you to a specialist. And I was just like, what? She was like, how long have you been trying to, and I was just like, well, in my early twenties I got diagnosed with PCOS and then throughout for the last 10 years, last 10, well 13 years, I’ve been going to my GP and just been given medication the whole time and no one wasn’t listening to me.

                                    She said, yep, you’ve got fibroids as well. I think at the time I had three fibroids, I think one was six centimeters and the other two was at one and two centimeters, and she was just like, yeah, I need to refer you. I was just like, wow, was referred, got forgotten about. So I had to keep chasing up and that’s one thing I would say, you have to keep chasing up your appointments. Don’t wait for that letter to come through the door or that phone call or that text. Chase to find out what’s going on with your appointment. Find out whoever your specialist is, get their secretary’s number and email and you make those contacts. They must’ve saw my name how many times and just like, oh, she’s contacting again. So I was like, look, I’ve been waiting. What’s going on? Then when I had my surgery, finally, I had eight procedures in one go.

                                    My surgery was about eight and a bit hours where I was only scheduled for a four hour surgery. And also I had, and before that actually I was having problems passing stool and I was bleeding through my back passage as well. So when I went to the A&E about that, they were just like, oh, you are just straining. You need to stop straining. You just need to take some up your fiber and then you’ll start going toilet. And I was just like, no, no, no, no, there’s something wrong. So when the surgeon went in, I had endometriosis wrapped around my colon and a nodule inside my colon, which they thought could have been cancer. So they had to remove that. I had my bowel, ovaries bent back. One was stuck behind my womb, another was stuck to my bladder, and then I had my colon stuck, I think behind my womb.

                                    I had endo in my fallopian tubes as well, and then it was just all over the place. So basically all my organs were doing this and coming together. So that was massive. Then after that they were just like, look, this is the best time you need to try and get pregnant after this surgery. Give yourself two months to heal and then try and get pregnant. That didn’t happen. I wasn’t given any information or any sort of support along that fertility side. It was just sent away, go and get pregnant, just monitor your endo symptoms. That was it. And yeah, we removed your fibroids. I asked this amazing doctor, he sent me images of what was taken out.

                                    So I have those images, images of where my before and after as well from that surgery. Then a few years later, I then had another surgery where they found ovarian cysts and then my endo obviously started to grow back. So then I obviously then had another surgery within a space of a month the ovarian cyst grew back double the size than what it was to the point where that’s when they thought I had ovarian cancer and then my tubes then bent back and then my actual uterus, everything was tilt sideways. So imagine my right ovary is down by just say the top of your thigh. So it was actually turned like this, so it was just not in the right position. And then my colon was affected again. So this is in the space of a month of having surgery, but my surgery that I had, I did ask that doctor to remove the fibroids. I’ve got five fibroids, which are still there. No one wants to touch them, but they are small. They’re two to three centimeters, but the cyst that was on my left side had to be removed. And then obviously with that, that’s touching the ovary, which then will affect your AMH and obviously I’m trying to get pregnant and my AMH was already low from the surgery before that.

                                    And when they went in, they found that I have a cyst on my right ovary, so that never came up in the scan. So they were very shocked when they went in. They were like, oh my gosh, she’s got two. But during that time, obviously being told that you might have cancer. So I was under the Royal Marsden as well as well as Chelsea Westminster Hospital. And before that I was, this time last year, I wasn’t walking because of the amount of pain and I think I had to have my partner carry me to the toilet, to the bathroom. I was having spasms and they found some endo on my, they said it was touching my nerve on my lower back. So I think around the lumbar part and the coccyx, and then obviously it was affecting my hip flexors, so my hips, sorry, on my left side. So that’s why I was having a lot of pain and everything down my left side and I wasn’t able to walk as much and everything, my feet and that will seize and go like this. So the endo started affecting my nervous system. Then I would get a lot of twitching on this side and headaches, my eye would twitch, which I still got a bit of that now.

                                    So they removed the left side, the left cyst on the left side, and they only drained on the right side because they didn’t want to touch the ovaries too much because my levels are on the low, low end to the point where they think you are going to go into surgical menopause if we touch the other side as well. And that was a risk that the surgeon before the surgery, before, he didn’t want to touch my ovaries because he was scared of me going into ovarian failure. But he gave me the an ultimatum. He said, do you want fertility or do you want to reduce your pain? You need to choose which one. And being told that a couple of hours before you’re going into surgery, you’re prepped in your gown before surgery, you have to make this choice. It’s like, but my goal is fertility, but you are trying to push to reduce the pain, but if you reduce the pain and do the stuff that you need to do, it’s going to affect my fertility. And then it was like, well then what do we do? Or you just don’t have the surgery, so what is your choice? And just like my fertility is my choice and that’s what I’ve wanted. I’ve wanted to have a family, I wanted to have a baby. And then as I said, within a month after that surgery, it just went left and downhill. And then I had surgery this year May, which was with the robotic surgery at Chelsea Westminster Hospital. And yeah, they did a great job.

                                    But yeah, it’s affected my fertility I feel, and I’m now just on that journey with that.

Le’Nise Brothers:          Yeah. Are you comfortable talking about the fertility journey that you’re on now? Would you be happy to say more about that?

Natalie Meagan-Blake:  Yeah, actually before lockdown we was referred and we had an appointment so obviously lockdown lasted a couple of years. We need to sort this out and I dunno how much I know that my endo’s growing and I don’t know where I am now. You can’t go and have any follow-up appointments to see where you are or we then had an appointment and brought problems with my breathing. So I actually had a blood clot in my lung and I had granulolas on my lung. Do you know what they are? They look like it’s like sugar, little white. Yeah. So I was having problems with my breathing and doctor, I went into a, I had to go into A&E because I just couldn’t breathe properly. And they said if you would’ve left it a couple of days, you wouldn’t be here. It was like a week. So I had to have all this medication done and scans done, try and to clear the clots. So that was a really obviously scary moment for me.

                                    And then from that I was like, yeah, I just need to have a baby now because anything can happen. I want a little me. And then from that we started having our appointments. I put on a lot of weight with the steroids and everything that they were giving me for medications for my lungs to help me with my breathing. So when I went to the appointment I explained, this is where I’m at and this is what’s happened. And they were like, okay, because I’m on this medication, it does have steroids, I have put on a lot of weight, I know BMI is included in part of their assessment with fertility.

                                    So yeah, they were like, yeah, that’s fine. I had my mine and then my partner had his. So unfortunately there are issues on both sides and I just felt like, so this is where it just affected, started affecting my mental health. I was like, if it doesn’t rain, it pours. It’s not only just me, it’s also my partner as well, which he had no clue about. He had surgery when he was a baby and from that surgery they think now that’s affected his fertility. So there was not a follow-up from when he was a kid. And obviously that’s way back in the day where they’d probably be like, oh yeah, you have your surgery and send you along your way, he’s fine. The baby he’ll grow, he’ll be fine, blah blah, blah, blah blah. So where it’s on the both sides, it just put us in a zone.

                                    But then they gave him some medication to take, then he was meant to go back. So we was contacting the fertility clinic and saying he’s on, we’ve paid for this medication, he’s taking this medication, we haven’t had a follow-up appointment come through yet. And then the lady was like, oh, okay, we’ll sort that out. Look it up. No, first they couldn’t find us on the system. And then that happened and then we had an appointment on the phone, which didn’t make sense. And then she said she’ll send us through our appointment so he can come in and get tested again. And then the next day I had a really informal email saying this is not something that you want to hear, but unfortunately you don’t qualify for IVF. So we was like, what? We’ve been having these appointments on both sides. He’s been having these urology appointments.

                                    No, I had one appointment. We’ve paid for medication, now you’re telling us that we don’t qualify. It’s because we’re not registered under the same, in the same area. And my BMI, so because my BMI at the time was, I think it was 31 or 30, it was 30 31. So that just broke me and I think I got that the day I went to Parliament. Remember when I saw you and I got home and I got that email and it just broke me. I contacted them and then they just sent me a list of their price list for private and I was just like, how insensitive are you? And the email alone within itself, I was just so upset and I just felt like I just wanted to give up my fertility journey. Then I was already in contact with The Endometriosis Foundation and speaking to Carla [Cressy] and she saw my story and she was like, I want to help and support you somehow. How can I help you? And at that time I was just like, I don’t know. I don’t know what to do. I don’t know the channels. I have never been given any information. So I don’t know where to go from what not to go. I dunno what to do. 

My partner was in his zone because of what he’s just been told and we’re trying to support each other, but then we’re both upset. It’s been a whirlwind year and a bit through it all. Then we went to The Fertility Show to get some information to find out what our options are. Do we do it here? Do we do it abroad? What clinic do we go through? And then we’ve gone private, we spoke to a doctor, Tyrone then had another assessment, bloods done. So we had to pay for all of this, all these tests and everything. And it’s not cheap. So it is really not cheap and it’s difficult. You just feel like you’re paying so much money, but you are given information. But it’s just like, help us a little bit, give us a bit more information on stuff that we need to do. It felt like I’m, we are paying for all these things, but it’s a lot of self-research that we’re having to do and looking up this doctor and that doctor and then you just feel so overwhelmed and stressed by it.

                                    But then we was just like, we’ve had good open conversations about it on how to support each other, how we feel about it. But now going down the private route to see, I know what I need to do on my side, I’m having to think about do I want egg donor? How would I feel about that? Surrogacy as well, because what I’ve been told, it’s like, but I might not, what’s the word, react to IVF, not react. It might not listen.

                                    And then also carrying as well with the adenomyosis and still having the fibroids, which is not inside the room or anything. So it’s on the outside so it wouldn’t harm in any way. I’m worried about if I would miscarry and it’s being told these things, it more makes you feel like, okay, I have to go down the surrogacy route and what does that look like for me? And then it’s like, okay, I need to get out out the way of thinking that I might not biologically have my own. Then I’m like, oh, well if it’s not mine, it’s someone else’s eggs. How would I connect with the baby if I’m not carrying the baby? Would the baby really connect with me? You start thinking all these things and you can spiral so much. And then it is having these conversations with people and the people are like, don’t worry, you will have yours.

                                    I have faith. And sometimes it’s like, we don’t want to hear that because we actually don’t know because of where we both are. We might have to get donor sperm, but then it’s like how does he feel about that? And then I know in this country you can’t have donor sperm and donor egg. So it’s like, okay then so how do you feel about adoption? So it’s all these conversations that we’ve been having the last couple of months and it’s like we have to make decisions and because of my age now turning 40, it’s like time is just gone and they say you are a geriatric trying to get pregnant and you are more high risk of all these conditions and miscarriage and yeah, it’s a lot.

Le’Nise Brothers:          It is a lot. I wonder about the racial side of it because you went to your doctor early on and you got a diagnosis of PCOS, even though one of the major symptoms of, pain isn’t a major symptom of PCOS. And I just wonder if you feel like if you were white, you would’ve been diagnosed earlier. What are your thoughts around the racial side of it? 

Natalie Meagan-Blake:  Yeah, so when I went into my appointment and I did state that my mum has endometriosis, they were just like, no, I think you’ve got fibroids. And I was like, but my symptoms are similar to my mum. And I was asked where my mom is from and I said, my mom is white Irish, and I’m just like, what has that got to do with it? And they said, no, but with black British, Afro-Caribbean, it’s more likely you have fibroids. Fibroids is a more common condition within the community. So I was just like, okay. For one, I didn’t even know what fibroids was when he stated that. And I obviously still didn’t even know what endometriosis was. I was just going off by what my mum told me and I was just like, well, no, I want to be checked. And in that same appointment I was told that, and this was at 30 early thirties, I was told I was a geriatric then trying to get pregnant or wanting to get pregnant. And the way he was talking was, it was kind of like, is that fair on a child?

Le’Nise Brothers:          Oh my God.

Natalie Meagan-Blake:  And then from that appointment I was like, no, I need to see someone else. I really need to see someone else. And then obviously doing research, I started to learn, okay, fibroids is a lot more common. So what was out there at the time, fibroids, it is a lot more common. Endometriosis is a lot more common in white middle class women. And then obviously the groups that I was finding. So it kind of made you feel like, oh, maybe this is through. But I was like, can’t be. But then I found out that the percentage might have changed now, but at the time it was like 7% of women, it can be genetics, so it could have been passed through from my mum and which unfortunately I feel that that’s what’s happened to myself. But going into these appointments and they’re looking at you and you’re just like, you’re this strong Black woman and you can withstand pain.

                                    And it’s like, well no, if I could withstand pain, I wouldn’t be here. And I know my body, there’s something going on. And then you’re looked at like you are hypochondriac and you are just wanting attention and you are telling them from a scale of one to 10, it’s 10. Oh no, let’s mark it down a little bit. And then I also found that through conversation with other people that they were just being dismissed just given paracetamol, going along the way, but then when their white friends or white family members would go into these appointments, they’re getting treated a lot more differently. So it was just like, why are you treating me different because of the color of my skin? And you just got this perception that Black women are a lot more stronger and we know how to withstand pain. And it’s like they were educated to believe less in black women than white women.

                                    I spoke to a trainee nurse and she said that she was told throughout her course that Black women are a lot stronger. Their pain threshold is a lot higher than the white counterparts. And it’s just like, so from when you guys are learning at uni or wherever it is that you are doing your courses, you are actually told this. And to me, I know there’s black people in these courses or why wasn’t it not challenged and changed? So now all healthcare professionals are out there thinking, oh no, Black women are a lot stronger than white women. So even though they say this, we just mark it down a little bit, why are you doing that? I found even on my notes that the receptionist wrote, oh, she’s called again about her pain. I wrote complaints, everything. I was like, are you being serious? What do you mean? Oh, she’s called again and why are you as a receptionist making a note saying, oh, she’s called again about her pain. Yes, I’m in pain. I’m not lying about my pain. Why am I not being believed? And then when my mum will go into her appointments, they listen to her. But then as time has gone on, I’ve had multiple conversations with other people and I have found that there are some people, there are some Caucasian people that are out there that their pain doesn’t get listened to as well. So sometimes I just feel okay, it’s down to the education of that healthcare professional and what they’re willing to learn and what they’re willing to self-learn. So what they go out there to learn themselves from coming from uni or anything going into the world, the place of work and adapting what they’ve learned to their experience.

                                    Now it can say in the books, oh, this and this and this and this about Black women, Caucasian women. But in the ideal world, when I’m having these six minute appointments coming in, it’s not that it’s not that. And we should be listened to throughout anything that we’re going through while we’re pregnant, adenomyosis, endo, fibroids, PCOS, like all pain should be listened to and it shouldn’t just be this script that they follow. I feel like when you go into these, I felt like I was going into these appointments and throughout the four doctors, it was the same things being said to me, the same things being suggested, the same painkillers being suggested. They also look at your age. So I’ve noticed that when you are at a younger age, oh, just go and get pregnant. Oh, this and that, you’ve got time on your hands.

                                    Then when you are in your late twenties and late thirties, it’s more of a thing where, oh, well  you are a geriatric trying to get pregnant or you are this and that. And also I think it’s where you live. So I know in my area sometimes I feel like with a fertility, the postcode lottery where I live, you only get one round, but in other areas you might be offered two. Why is that the case? It should be if this person is going through this, then we can offer this amount to that person. And it just feels like if you’re more in a deprived area and then when you look at what your surroundings are and the culture that is around where you live, it’s like you’re trying to control the amount of help you would give us as in to try and get pregnant as well. Yeah, there’s a lot.

Le’Nise Brothers:          Yeah, it’s a big weighty subject, but I do feel like with everything that’s happened over the last three years, people are more willing to have these conversations, which is a really good starting point. It’s not the end, but it is a

Natalie Meagan-Blake:  Good, I’ll say even with that, sorry to interrupt. Even with that, I’ve noticed when I have spoken on color and I’ve spoken on race, I’ve noticed quite a few people still step back because they don’t want to get involved in the conversation or they feel they can’t speak on it. Or I remember doing a live and from that live when we was talking about race and pain and being listened to, and I noticed even with my Instagram followers that just went down and it was just like, why? And one lady messaged me and said, oh, I liked what you was doing in your page and that, but when you are then now speaking about race and stuff, you’re taking it to another place. So I don’t really support that. And I said, but would you want to learn and as a Caucasian woman, would you not want to learn how other cultures go through things?

                                    Educate yourself, learn from the people that are speaking that the people that you chose to follow when it was Endo month or Black History Month and you want to show some support, show that you are supporting, like you’re being a good supporter and following, but as soon as the conversations are being had, you want to step back from it. That’s not helping and supporting us as much as the community needs to work together and help and support each other, we do need other people to come and help and support us as well to be heard and to be listened to properly and to be taken seriously.

Le’Nise Brothers:          Yeah, it basically feels very a myopic view of maybe not feminism, but it’s just about I want to get from you what caters to my own experience and I’m not willing to hear anything else. But I want to, we could talk for so much longer. There’s so much I want more to ask you, but in the interest of time and also leaving listeners wanting to seek you out and find out more about what you do, can you tell us the one thought that you would like to leave people with? If someone’s listening and they’re on the start of their journey figuring out what’s going on with them, what’s the one thing that you would want to say to them?

Natalie Meagan-Blake:  I think put through my experience and advice I would’ve liked for myself is that advocating for yourself and speaking up is not a bad thing. Don’t be scared to ask for that second opinion. I feel that you’re always been told that you must listen to the GPs and that’s it done. No, listen to your body. Learn your body and how your body reacts to things. When I used to personal train, I would tell my clients, learn how your body reacts to food because not what I can eat. You might not be able to eat. It might flare, you might have a flare up in some sort of way or constipation. So learn how your body reacts to medication, to products that you use and to the way you eat and to the way you exercise. That’s even down to walking. Even down to walking. Some people can walk for hours and be fine and some people can walk for just half an hour, they get fatigued. Think about why you get fatigued. Is it down to your condition or is it down to you’re not getting the right nutrition into your body to help energise yourself properly or you’re not getting enough sleep in. Sleep is such a big thing to help you with recovery to help you when you are flared up. And in that state. 

Also try and have, I say try because I sometimes think I’ve got an amazing support system and then some friends just drop off because sometimes they don’t want to hear about what I’m going through or Oh, it’s just another pain, it’s just another flare and about blah. Sometimes I felt that I was pushing to make my friends understand what I’m going through. You can’t do that. A person will choose whether they want to support you or not and you have to learn how to accept that. And as much as I know losing friends and that has hurt me and it’s upset me and I get angry and blame my conditions, it’s like that person just can’t give you that space and energy. So know who you are speaking to about what you are going through. Find that one person. But even though when you are talking and releasing everything onto that person, you need to check in with them as well because as much it is affecting you and it’s you that’s going through it, that other person is going through it with you as well. So make sure that they’re in a space where they’re ready to accept what you are talking about. It can be very heavy and it can make that person feel helpless and that’s not a nice space to be in. If you’ve ever felt like that you want to help someone but you can’t, that can play on their mental health as well. 

And also checking in with yourself and your mental health, doing things as and when you can to make you happy. When you’re having a good day, do something. If that just means going out for a little walk or getting that ice cream or something to fulfill your day, to make you feel happy within yourself, because it can be very heavy, it can be alone. It can be a lot on yourself physically and mentally, even if it’s just sitting down watching some cartoons as I do with my duvet, but I’m in my happy space and I can feel a bit more fulfilled within my day because I’ve done something that has put me in that joyous moment. And you’ve got to try and laugh through it. You’ve got I dance. Dance and music is something for me, stretching. There’s loads of things like when I’ve adapted some of your yoga and your sessions and the stretching and the breathing and that’s helped me. It also helps my anxiety. I suffer with anxiety and I have panic attacks. I had one yesterday, but doing breathing exercises and stretching, that helps. There’s so much I can say and leave you with.

                                    I’ll just leave it for that for now.

Le’Nise Brothers:          Where can people find you?

Natalie Meagan-Blake:  I’m mainly on Instagram at the moment, so it’s @natblake_endowarrior. Or you can follow the Sunday sip live event page as well on Instagram. Yeah, that’s main two pages at the moment.

Le’Nise Brothers:          And all the links will be in the show notes. Thank you so much for coming onto the show and Natalie, your story is, your experience is incredible in what you’ve gone through, but also how, I know you’re not on the other side, but you’re still on the, but you have, there’s such as, I want to say strong, but I don’t mean it in the sense that it’s been used, but you have a real strength and resilience about you. So I know that listeners will really benefit from hearing your story.

Natalie Meagan-Blake:  Thank you. Well, thank you for having me. I really appreciate it. Thank you for giving me the space and the time as well. You are amazing in what you do and the support that you’ve given me as well has been incredible. I’ve learned so much from you and it is helped me to manage what I’m going through. As I said, the breath, everything, your book, everything. So I thank you for everything that you do. Love.

Le’Nise Brothers:          Thank you so much.

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