Hello! And welcome to ANYONE F'COFFEE - A NEW Women's Health Podcast and a groovy PULSE AWARD funded must-listen-to pod - gently nurtured into this world by help from those amazing folks at The British Podcast Awards and The Wellcome Trust.
Thanks for that folks!
This week's episode - and they are coming out weekly - focuses on Endometriosis. A condition we explore through the real life experience of real life Kirstin Stansfield....teacher, medieval historian, amdram pal and friend of mine.
We explore in this episode what it is, how she was treated, how she felt as she went along and why it was so hard to get diagnosed. After the interview with Kirstin is a fun segment of audio fiction (written by me) exploring the relationship of 5 characters with the conditions this podcast explores, all connecting over a cuppa, and finally sharing elements of their personal journeys. This is part verbatim and part theatricalised and I hope it makes you love these people and characters as much as I do! The last part of each episode will be an interview with a person in the know - either a medical professional or someone working closely with folks with the condition.
If you suffer from the kind of pain FREYA does and haven't yet sought help, please find info and where to go for help in the shownotes links. Please be kind to yourself x
Today we explore How and where folks with this condition (or suspecting they have it) can find help and information....and today we have help from THE LOVELY Faye Farthing of Endometriosis-uk.
HERE is a link to the CAST BIOGS, allll references we make in the podcast ep, and to the sound effects I used in my original audio fiction PLUS full credits...on my Quirky Voices Website.
Music was by Matt Hutt and Zac Lemon - love it! Isn't it groovy...?
CAST - Diane Alexander, Lara Parker, Lucy Shirley, Sarah Golding, Fiona Thraille and introducing KIRSTIN STANSFIELD. Thank you Kirstin for sharing so much of your personal experience and thoughts, and to all my cast - BLOOMIN' LOVE YA!
The Audio fiction segment was recorded in the Mysterious Movies Podcast and film studios in SEER GREEN, BUCKS. Please do contact Celine@mysteriousmovies.com for info and bookings! They are truly lovely - and we could NOT have done the day without the amazing engineering of RAPHAEL DARLEY in the session, who manoeuvred mics and made it a very cool and easy experience to get it alllll done! Thanks RAPH!
Written Directed Produced and Edited by Sarah Golding. I even drove the car.
Executive Producer - Fiona Thraille
SFX ALL FROM FREESOUND.ORG OR MADE BY ME
Thank you...sincerely to everyone who has helped me make this seemingly epic season of ANYONE F'COFFEE. There are 2 more episodes focusing on ENDOMETRIOSIS, and then we look at POST NATAL DEPRESSION, EPILEPSY, ECZEMA, PTSD/ANXIETY AND DEPRESSION. Please do share this with anyone who would need this in their life right now...and please do contact me on QuirkyVoices@gmail.com about any aspect of this production.
Thanks again to FAYE FARTHING of Endometriosis-uk for her time - she'll be back next week!
And finally thanks to all of my Patreon supporters for keeping me buoyant and motivated throughout this last year. If you feel you would like to support my Quirky Work and help fund new seasons of this pod and more, please ping over to my PATREON account orrrrr my Quirky KO-FI. Much and many happy jumping up n down gratefulnesses for your support xx
Hello and welcome to anyone for coffee. Yeah, an inspiring, uplifting and truthful look at a variety of women's health conditions... from those that have been through the mill and currently still suffer... some... in silence ...until now. My name's Sarah Golding Hello! I'm a Voice Actor and Audio Producer, and this podcast has only been made possible by the grant from the Pulse Awards funded by the British Podcast Awards and the Wellcome Trust. So, feisty, thanks from me, to All those folks who made this possible, and also to my glorious patreons who I adore! Thank you so much for supporting all of my journeys of audio Joy. So far....let's hope this one inspires and amazes you. Today's episode focuses on endometriosis - a condition explored by the actual current experience off the wonderful real life person Kirstin Stansfield, through real life 1 to 1 interviews with me followed by a, a fictionalised audio drama segment, as well as a chat to a medical professional - or, due to current restrictions of circumstance (that we're all in right now) a person very much in the know. I do hope that by the end of this season, folks with these conditions know where and how to get help, how to help themselves and should recognise when they need to seek help, and ultimately not be afraid to just share your feelings and experiences SomeHow somewhere. So on to the first interview, where Kirstin tells us what the condition is, and how it has affected her every day.
Hello, Kirstin. Welcome to Anyone F'Coffee - it's great to have you on today. It's, um it's been an exciting adventure. Getting to talk to all the ladies, and you are like the final, very important piece in the puzzle. So... thank you for coming to speak on the show..today.
The main thing we're focusing on today is endometriosis and... First thing I'd like to do is just find out what that means from your perspective. What is it? How does it manifest ? And then into How has it affected you?
Okay, endometriosis is an odd condition in the sense that... No-one really knows exactly what happens or why it happens. But for some reason, in some women, the cells that normally line your uterus The ENDOMETRIAL cells, which are the ones which shed blood every month, find themselves in other places around your body. It tends to be in the pelvic area, but they can migrate anywhere in your body and Then they are affected by the same hormones as the enemy cells where they're meant to be. So when it's your time to bleed that month, they also bleed, which essentially means you have internal bleeding every month, and because there isn't an outlet for that blood. It just kind of hangs around. Yeah, and then your body has to find a way of breaking that blood down, which can be very painful, and. It's something that I have probably been experiencing my whole life, you know, since my periods started. So you know, we're talking right back to when I was 12 or 13
So thats...10 years ago?!
Ha Yes...They have progressively got worse. I spent a lot of my later teenage years in my twenties on the contraceptive pill to try and manage the pain and the heavy bleeding, which did kind of help , and then, when I decided to start a family and I came off the contraceptive pill, they then got progressively worse again, and it took us a long time to get pregnant. which we eventually did after trying for 2.5- 3 years.
Hurray! That's a tough journey when you're yearning for that family to..start.
Yes it is a tough journey. And at that point, I didn't have any answers. I went to see the doctor.... I think every six months from around, you know, 13 14...
You know, way up until what? I probably stopped going to the doctor quite so often in more recent years because I knew that they were just going to tell me the same thing. That there was nothing that they could do. But in the part of trying to start a family, I was referred onto a gynaecologist who did do some tests. But nothing really came of those tests. They don't think they were looking for endometriosis. I don't think that it was really on their radar for whatever reason. And so it kind of got missed. And then I was lucky enough to to get pregnant. I think I've been prescribed Clomid, which is a fertility treatment, but hadn't actually taken any of it. I think part of the relief that actually there was *something* that might help, I think, helped in that process that understand? Yeah. Psychological change.
So kin d of having some answers helps with that. And then after I had my son, I was lucky. My period's didn't return for an entire year after he was born, which was amazing. That was almost two years without periods.
Actually, for the next kind of four or so months, things were great. Actually, the pain was non existent and Then it hit again. So obviously I had had a brief period of time when things had had to kind of slow down in that previous, you know, two years or so and had therefore relaxed, you know, their cells haven't built up, then over those few months, they've built up quite rapidly again. And it's at that point again. I went to the doctor's... again, kind of said, You know, I almost know what it's like now not to have pain. Yes, I kind of reassert the idea that actually, the pain that I had been living through wasn't really sustainable
Wasn't right...no hmm hmm
...and wasn't normal and so.... I was sent for more tests. I I was sent for various scans which in some ways was good that they were looking, but also in other ways. It was just delaying the process that they'd found a cyst on one of my ovaries. But in the end, it turned out that it was just a normal cyst that come and go. So that was kind of another few months because you had to wait between them scanning it - to wait to a certain amount of weeks um. And then eventually they came up with the idea that they didn't know what was wrong and needed to send me on to specialist, which they did um through the Nhs.
Was That local to you - convenient ?
So it was meant to be at the at the local hospital. But for whatever reason, my appointment got cancelled and or pushed back, I think three... times. So I think my appointment was initially meant to be in February of last year. By the time that I was actually going to see them, I think it was May or June, by which time the pain has been getting. Even worse , and I was lucky that my husband has health care, so we decided to add me to his health care, and I was seen by a fertility specialist who had an interest in in women's health, and endometriosis, because my GP had suspected at that point that I had endometriosis and I was able to see her very quickly... and almost i think within a month I was in surgery. So that was it was lucky for me that that that was an option... that I could take because I think even had I managed to follow through the NHS doctor.... had they then decided to put me through for surgery, I would be waiting another 6 to 18 months before... that surgery would even have happened. And so then I had that first surgery was in August of last year.
Can I ask...What that is..what that exactly entails ..cos surgery for some people....?
What that exactly entails cause is a LAPAROSCOPY, which means that it's keyhole surgery. So they made three incisions, one in my belly button, then one kind of directly down just above my pelvic bone, and then one to the left of that as well. So kind of in a triangle. Then instruments are inserted through there with cameras ...so that they could then then go in and see what's going on, and... The thing with endometriosis is that it can be suspected, but it's only diagnosed by actually going in. That's the only way in which you can diagnose it and I was lucky that, also through this health care, I could have a diagnostic laparoscopy and get treated at the same time. Whereas I think on the Nhs they would go in, diagnose it and then it would be in later surgery then to go in and treat it. They did find it, which was good in a sense, as in it was good to have the information that, you know... everything wasn't just in my head . See one of the things with me is that, for the days when I have my period and it's really painful and I will be on the floor with pain as in, I... quite regularly will have to get down say, from the breakfast table, and just lie on the floor, or lie in the bathroom... or spend quite a long time lying on sofa, and not being able to do anything for the rest of the month. I'm fine.... and so it's kind of... in between those times I almost kind of think is it really as bad as I think it is? And, you know, even to the point of every time I'm going to the doctor's. And I'm saying, you know, these are my symptoms I have to talk to my husband, and say, what is it that I'm experiencing? Because I don't remember because it's just PAIN.
You're just in there, not necessarily aware of exactly what is happening,
Right? So It is chronic? A feeling off like cramping? Or ... can you describe how that might be someone who might be suspecting that maybe their periods are strong? Because I want to go back to the fact that the clearer months that you had when you realised that actually... what's happening before wasn't right there might be someone listening Now who has that, too, and has that little suspicion. So can you describe the kind of feeding off that pain? Exactly?
Um, it's for me. It's a mixture off nausea.... So dizziness feeling sick, you know, very strong cramp in my stomach, but also in kind of the tops of my legs as well. My legs go extremely heavy. Linked in with back pain as well. and Yeah, can you help me describe anything,?
I think, the chronic bit makes it really hard to describe because it's just pain - there's no real symptoms with it its just....
And it's just to the point, them getting through it and I've been looking after my son some days, where I work, it tends to hit me first thing in the morning is the worst and, So I've kind of got up and...You've gone off to work, and it's just being me and him at home and trying to get him dressed. And I just had to get into his bed. And he just had just had to get on with something, because I can't do anything. I've just got to lie still.
And how long does that typically last in a particular state?
Sometimes it can last a couple of hours. People can pass quite quickly. Sometimes it could be a couple of hours. I remember when we were living down in Bath are used to lift share with another teacher and...We used to take it in turns, so I would do one week and she would do the next week. And then sometimes I would just have to text her in the morning and say, I can't drive. You need to come and pick me up. I knew that I would I would be all right by the time that we got to school.
But for that period of time, I wouldn't be ableto kind of do anything.
How did that affect you? Like for your day to day? Obviously you had that friendship - reliable person. That obviously was helpful, but yeah. How did you get through those particularly bad days?
Um, I don't know. I don't know. I think just kind of knowing that kind of understanding...what ... what is going on. I think helps, and expecting it to happen. Kind of knowing. I think it's over the last 10 years or so and have been much more on track of my cycle. I think as a teenager I didn't really understand, it I dint really think about, it because I was on the pill as well....I didn't really think about it. But now you know, kind of. I know what's what's going on with my cycle. I know my cycle length and I can track everything so that I kind of know when it's going to happen.
Is that on an app?
Yes on an app. Yes. I have used many apps to to kind of track it and I'm also lucky at the moment. I work part time, which means more often than not, my worst days are days that I'm not working ...because I work 3.5 days. So that means actually, a majority of the week. I'm not...And so therefore, it is kind of manageable and just knowing what does work and what doesn't work... kind of helps. It kind of hit me last week because which was my first period through since my most recent surgery. So I wasn't expecting it cause it had the surgery kind of thrown things off, so I wasn't expecting itand I was at work and I always have painkillers with me. I have paracetamol and Ibuprofen with me at all times and... It wasn't cutting it. At all. And... So luckily, I had read fairly recently been to the doctor's to get a prescription of another painkiller, which I take Naproxen, which does help. But you can only take it at the beginning and the end of the day. So I kind of I knew it. I knew I needed to get through the day. So that I could take the the painkillers that I would be then in the cycle for there for the next few days. Yeah, in terms of coping with that. As I said, itit hits worse in the morning for me. So therefore, I kind of know that things will get better as the day goes on. I think that kind of helps and... getting good, just getting on and keeping busy helps. And it's really difficult because ...when you're in that state, the last thing you want to do is to get up and go to work. That actually, in some ways, being at work, it means that I'm doing 100 other things. That means I'm not focusing on the fact that I'm in pain.
Yeah. Have you had to divulge this condition for work? Do they know they it's happening with you?
They do - they have because off the time I've had have off work for various appointments and surgery in the last two years. But other than that, there are key people at work who have known. But... I wouldn't I'd certainly didn't really talk about it that much with with majority of people, so that there were one or two people who had kind of seen me at my worst, who kind of new like on one day. I had to rush out of assembly one day, because I'm going to faint, right? You know, everybody's in assembly. Yeah, I'm sat at the side. It was the, you know, the middle of January. It was snowing outside and I had slowly during assembly been taken of my jacket. My cardigan... and my scarf because I was overheating and Then that was it. I had enough. And I just had to walk out of assembly in front of everybody to go and...to go and lie down in the sick room. And so obviously there were a c ouple of people who kind of picked up on the fact that there was something not right there. Yes. So you know, having to divulge there... about kind of what was going on.
And did you mind having to do that? Or did you not want anyone to know?
I didn't really mind them knowing, but at that point it was ..I just have ....really bad period pains, which just fell a bit pathetic, right?
But it wasn't that it was it? But yeah....
But without knowing what was going on. Yes, I had no other way of explaining it. Yeah, other than that
And as far is how..., when something has happened that has felt really hard hitting like day after day of this. How have you coped with that kind of perpetual nature of it? I mean you said it all works along with your cycle. So you know, there will be an end to the days of this. But how have you psychologically coped with those kind of days to treat yourself Well?
Its been really hard. I don't really know. Don't really have any answers to that.
Have you been kinder toyourself because you're dating with this chronic pain continually? Because if not, I'm going to tell you off
I have more recently when I think only really since the diagnosis. Whereas before? As I was saying, without knowing what it was exactly, it was just I suffer from period pain, as does every other woman, you know. And that's, youknow, that's what I was told. Every time I went to the doctors, and I told them it is just bad period pains and I have two sisters and They both have experienced the same thing - my mom has experienced this pain saying - But I'm the only one who has won yet had a diagnosis - so for my family, having very heavy, painful periods. It was normal - so therefore it didn't feel so
Completely out of order yeah interesting
So therefore you don't ever really know what it's like for people outside of your family. So you only really know the people that you see and, You know, I knew that my sister was going through these things and she was fainting at school. And actually, for most of my teenage years, I was doing better than her.... So therefore, if she's okay, you know, she doesn't have a diagnosis, then. I'm okay too. So it's kind of it for a long time. I think it was just battling through and...Just existing.
Yeah, Yeah. I mean, going back. to... obviously, you have the most wonderful little boy. If you're ever lucky enough to meet her little young man, you're a lucky person.But I think obviously I feel maybe it would be lovely that you want to add more to the family. So currently..., is that a kind of mini battle within you as well at the moment?
So I guess that kind of really sparked off the investigations that have been going on in the last couple of years because kind of pretty much since I went back to work when my son had turned one , we thought well, it took us so long the first time we kind of need - If we want more - we need to start trying a soon as possible, which we did. Um, you know, and he's now almost four, and there is There is no other little people and so thats something that we have been battling with and kind of knowing, knowing that something was wrong beforehand before we had him, but not having answers... and then, as I said, having that period... when... I wasn't in pain but having periods. And then them coming back again so strongly, It kind of reinforced that. Yeah, we actually did need to go back and and see somebody. And it's really difficult because doctors are very willing to help with fertility but are not willing to help with period pain. So both times that I was referred t on to anybody, it was primarily fertility, with endometriosis possibility as a secondary thing. Where as yes, I do want to get pregnant again. I do want to have more Children, but I also don't want to be in pain. And actually, for this year, that's beenThe focus - not being in pain. Um, so it's difficult because my sister, who was also been, as I said, battling through her whole adult life as well, has in this last year again being going back to the doctor - she's not trying to have a child and Therefore, they've been much less willing g to go down the route of surgery, and have been offering her alternative things like the coil and contraceptive pills to manage things rather than trying to find a diagnosis and treat it. Yeah, that's a really difficult one to try and understand about. You know, I do understand why..., certainly with the Nhs.. the need to work out where their money needs to go. Yes, that is something to think about. But at the same time, you know, there were so many women out there who are suffering on just being fobbed off with. It's It's just something you have to have to deal with or manage on your own.
And what advice would you give to somebody who feels like there's a problem? And there's an issue and is also yearning to either add to or start a family
To keep going back to the doctors? I've certainly found more recently, the doctors are much more open to the ideas that there might be alternative problems going on. Now weI was surprised. Actually, that my most recent trip to the GP about this, the one before I was referred on. Actually, she had suggested that I might have endometriosis, which I kind of had been thinking for... for a while, so it was kind of good that she was the one kind of bring that forward. So I'd say that certainly for me, there are a lot of my kind of twenties. I kind of stopped going to the doctors because I wasn't getting anywhere, so definitely go back. But also find out about the condition. Educate yourself so that you can go in with an idea of what is. The problem with endometriosis is that there are so many different symptoms that there isn't a typical of set symptoms and so therefore any number of People with endometriosis will have varying different symptoms. And, you know, you could be in a lot of pain and have very mild endometriosis. Then you can have no pain and have really extreme endometriosis, so it's not even as if just kind of pain is the main symptom. Just as I said you can have it without that pain, so you can, you know, you could be experiencing the problems of fertility. That endometriosis causes, but not know why. Because you don't necessarily have those other symptoms which might lead a doctor to think that that it might be endometriosis.
Thank you so much to Kirsten Stansfield. There are actually two more interview extracts in the next few episodes coming out weekly that continue to explore her journey. Please do have a look at the show notes for information as to how to contact us if you want to. Regarding any aspect of this episode and for hugely useful links, jump in. Have a look! Now. My love off audio fiction is such that I wanted to explore the dynamic of the suffrage if you like, and the highs of friendship for these individual characters. Theatricalised versions of my real life friends with these real life issues. Now they all have their own private struggles and yet end up finding a forum and the right time to share. Now the scripts were based, sometimes verbatim on what was said in their individual interviews and Some elements were theatricalise to...to, just to keep the momentum and camaraderie - an essential tool to help impart information and experience in a more... uplifting way. It was SO MUCH fun to record with my real life pals and These are folks who have met in the last 20 years doing Amateur Theatre - Community Theatre. They wanted to play versions of themselves, so I hope you'll love them as much as I absolutely do. So here's the first part of our audio fiction were in Gabby. Rachel and Charlie are visiting Kirstin's character, Frayer, for coffee. We start with a positive visualisation being imagined by Freya as she lies in a lot of pain on the floor. Bear with it and...ENJOY!
Enjoy Stephanie. Well, President correctly have dementia. Sarge says we should call it the Abdo Women. Okay, so just can't on you to clean this year. Uterus inside this Abdo woman of all extra radius. Bad cells from top to bottom and only between duct Forget the flow p achieves. And no taking on the ovaries we want I need a way already done three now, is it, boy? Ah, woman. This is a positive visualisation. And so it's equal opportunities in the wrecks at glasses. Maybe, but you can't just go around being in someone's Beatrice Didn't think we've gone off tension again, Sarge. On the old visual isation, think about sales and kicking his touch. Anyone else? You find those evil shell's looking, you cut him out. You owe me off every ourselves to make this place a foetus. Aurora, What We need to get this place ready, right? Some of us are women. I'm number replacing years we go through these have done no decision. What? Ro, borrow until we're all engaged in bloody battle. I'll follow at the rear and all over here on this glorious and Crispin's Day, we will fight this friar Sudan and they get to be on baby Tio Tio e i e. If I may, that may be anywhere. I am but an imagined character. China positive visualisation, Maybe herself might actually need to toilet and yet feel too weak to get up in the moment. And therefore is using me as a conduit to let herself no personal want. Where are they need next? Positive Visualisations We maybe. But we still have a job to do. I must say she's imagined I particularly wondrous moustache. Yes, very nice. What was I ready for a lady? Men and women who have No no Boutin. Thank
you. No. Forget the street is up
here. Nice houses. I've been here in a while. Thanks for the lift. Napster. You're welcome. 50 A base. Let me out! You know some Crispin State today, once far unto the breach dear friends. I love doing that play. You were brilliant. Henry. Five. Gather the fifth. Henry The fifth, Henry five. I Uh huh. That's weird. No smell of bacon. What? Well, she usually does a fry up, right? Something came right Friday. Sense tingling amongst other things. Yeah, What were in those lovings again on you might be might be. No, no so answer. That's weird. The bathroom window's open, though, so she's definitely in good work, Detective. Well, let's have a look. Those you see any signs of life? Oh, my God, Uncle, she's I think she's dead. Don't don't, don't don't. She's lying on the floor, in the hallway to the kitchen. Freya Freyre Are you dead? Onto May? She is. That's gonna be hard to know. She's probably just so tired. She fell asleep on our way to the kitchen. I do that sometimes. I mean, it's a good shag pile carpet. She's got there. Probably quite cosy to lie on, like your new answer. Love How that feels. Don't you even think about shagging in it If you baby sit, I wasn't going to, but now you mention it. I'm all up for the new experience could be her up. Okay, That's Gabby. Serious face. She always had a serious. He died. He died all Freya. Freya, open the door. Shit. Actually, you're not joking. I thought she was joking, too, Because she does that. I mean, you gotta address since Hillary. Yes, A finger. Charming. Seriously, Rachel, something isn't right. She's not moving away. You're right, huh? You're not leaving? You got married. You know what? Water bottles as with Wait, We did. You called police. Let's bash the door down the hall. Down the front door. I mean, it's a ghost. Austerity front door. We can't just bash it. Just got these nails done. Reverend Robert. What a lucky you. I had a robbery. Might boot of the weekend. Actual grammar. Rachel, I want this right. Police to a party this weekend. Riot police. It was my turn to bounce of the eighties party. Haven't been out for months, so I thought I'd go all out. You have to think outside the box. Someone did Go is living in a box. There was a song. Not bad. It was Obama's. Well, it's quite a fun party, actually. I borrowed some of Dave's kit that you don't like that box. And one out of police academy came and helped me. I won't ask how I got to give it all back yet. What's so? I just thought not surprised me. You still got a few of my DVDs on DH. My curling tongs from last year. Ah, Rachel, Jesus. Stop talking grammar and Thomas and get the grammar. It was actually called that. Let me look through. I think you're just joking with me that she's while Yeah, she's actually not moving. Atal Prayer Gold. What if she is dead? What? Like, actually, she's I've actually seen a dead person. Uh, maybe I have now freaky deaky with someone
broke in and cover in hot water bottles. And I don't want to think about
RIAA. Oh, what, She's not going to run Ram ish, you know, with those massive tissue herself, Maybe we could just break a window wi you be easier, possibly less expensive to repair a good idea. Uh, why don't you look around back first? It was a win. That that's what you say. So the boys Okay, Bones, Why? Ready Rachel's out away match, huh? I think you need a proper run up is this is 30 bastard door grabs right on. The ramen is close to counter where the door look, ese, I guess that's some of the films, right? Okay. Come on, let's break this bastard. I wouldn't say that them is this for now. Good. So I've never done it before, huh? Okay, Wait, wait. Uh, you can't be. You okay? Oh, who? Oh, fun. Oh, have been back has exploded. Thanks. Well, I sort of e would say come in. But you have already, uh you know, I'm glad to see you're not dead. Last eyes, this, uh, fashion choice, it just helps on days like today. I I didn't expect you Not so
yeah. You know, like some kind of game with phone calls. Uh, exactly how many water bottles that they
touched you? As many as like Father. They said it helps. Come on in. That's more gently than Gabby has, If that's okay. Yes. Cripes. What's that? This's Rachel. I mean, but I got my own, but I think I'll live.
Sorry, Freyre. We'll pay for the damages that this weekend. Oh, my God.
Oh, you're in. And you're no beds. No, not yet good, but a good few decades off. That one did. Did you just smash my kitchen window? Is that a metaphor? We thought you were dead because you were, like, lying on the floor. Yeah, that was weird. Why couldn't you hear us? How? I fell asleep with me, Your phones and I I'm having I'm having a difficult day and I know a good to see. You were really worried. Can we get a ram around everything? Not for the first time. Processed hug. Come on, then. I mean, so much to tell you she's lying on the floor. Oh, wow. That's so what? How do you know of their degree Brands? How shite. Stop it. No more pugs are help me up someone. I come in 50 Asia. No, seriously, I can't know because it's not your weight. It's never suggested it. Wasan mother to read the river. Jimmy Light. Okay, Carol. Bag. Okay, well, right, I guess. Although mother to raise a would have said keep busy with your own affairs are not those of others, I should tell you, I guess that I have an operation tomorrow. Anyway. What? I come on through and I'll tell you. Seriously. All those hot water bottles are too damn hot too. Just like me. Just gets up crushed. I would put the kettle on, but I've cut myself. So maybe I'll go find something to stop the bleeding in the kitchen. I have question, I I hope. Okay, Charlie, fire away. What are they, like, six portable to take to you. And why were you cooked out on the floor? Hey, you got any plasters or antibacterial wipes or something? I've only found How? Yes. Let's sort out your bleeding on before you bleed all over my new floors. And you, too, can go through to the round, if you like. Sorry, I haven't had a chance to clean up properly, so find the Lego minefield. But to be honest, I thought you were coming next week. I got the dates wrong. Obviously, I haven't had you over today. I kind of needed Well, I meant to be taking it easy before the op. And I'm feeling kind of Should we go leave you in peace? Sorry. I made a mess of your robin. Teach how? I think it's a robin. Well, it's got a red breast now. Only feel like finding here to stop the bleeding. Sorry. I believed in everywhere it seems I know the feeling. Hang on. I'll be in in a second.
All right? Right. It's
if you can
find any good biscuits while still looking through the drawers. Uh, thanks. Frayer. Well, that we'll just take a pew. Two sugars. Thanks.
Um, why are you wearing, like, four hot water bottles? More like six had sought you out. Put the cattle on and I can tell you all about it. You all right? Twice. You're right. Three back doesn't have her there. It isthe only to walk on it. You know you'd kill me, Tommy. You know she's having an operation. No, I was gonna ask you. Did you know what fall? It was a bit weird. She hasn't told me. Or you. I wonder if she told Rachel. She
does look a little pale, don't you think? Yeah. I mean, I know she wants another baby. God. So do not want another one ever nearly bloody killed me last time. Still be paying for it now. I am
not moaning about it. It's just the way you said that. It was like
shut the fuck up. I know. I just
said I know. That was quick. I'd already boil the cattle to top up my hot water bottle. Can you take this? Please? Be carrying heavy things right now and I've cut my hands. Ah, cafeteria genius. I'm gasping my skin of the mug.
Two down, Two coffees help. So if you know where they are,
right, right. Rages all patched up. Oh, Charlie, Which out of the glass by the window, I cleaned up as much as I could, but not being able to bend over There's still a few stray shards. I'm sure she's just shuffle, kicks it all into the corner. Reminded me of the choreography for stepping out. Oi, I did that, but yeah, Just be careful. Always careful. Round my back door laugh are, for God's sake, Rates. You so need a good shock. I wouldn't say no at this point. Anyone free? Oh, my God! Shut up, Rachel! Prayer! Come on, Spill. What's going on Worrying? Fine. Everything's okay. I've been meaning to mention it, but it never seemed like the right time. Now, now's the right time. Okay, So Okay, I'm going to do this. Okay? so I'll get on with it. Okay, so I have enemy Drusus on DH PCL. Oh, no, uh, my friend as that. They're Pokemons, right? How? Oh, my God, Rachel. It's a bloody painful disease condition. It's not a disease. You can't catch it. I am literally no idea what it is. I think I've heard of it. You can't catch
it, though. You say, Is it
back? You're feeling all right? Surely they talk about in Heat magazine. That's your educational paper of choice, right? Rage. She's about to have
an operation. How do you think you feel? You did it.
All right. You love. Ignorance is bliss. Arrogance makes you a twat. Sorry, Freya. You were saying? It's It's not bad. Well, not that bad, I suppose. But it isn't good. And I feel shit. So clear off my sofa. Are you two, like, down before I fold him?
I would love to Welcome to Anyone F'Coffee today, Faye Farthing, who is the campaigns and communications manager for Endometriosis UK. Hello, Fay. Welcome.
Hi Sarah. Thank you so much for having me!
Ah it's very, very exciting to speak to you because I think you probably are a font of all knowledge as far as getting folks too help and to the right information for this specific condition. So...Very excited to speak to you today. First things first. What exactly does the endometriosis as a charity Do? What can folks find on your website, and from your wares that will be helpful?
Yeah, no, of course. So Endometriosis UK is the UK's leading charity supporting people affected by endometriosis. So endometriosis effects around 1.5 million women in the UK and sadly, diagnosis for the condition takes an average of 7.5 years, which is something as an organisation we're absolutely determined to drive down. And so part of our work is raising awareness of the condition that's amongst politicians, the media, and workplaces, trying to get people to have an open conversation about endometriosis, and about menstrual health, so we can raise more awareness. So more people understand the symptoms of endometriosis and know where to seek help - w'ere also involved in research. So I'm sure you're aware that there is nowhere near enough research into this condition. We don't know what causes it. There is no cure at the moment and treatment options are limited and definitely need to be be improved. So we're involved in a number of research projects to ensure that the patient voice is always heard so that we can work towards a world where endometriosis has less impact on people's lives. We also provide information and support. So at the heart of our charity were support charity. So we have a help line. We have an online forum, and support groups who normally meet across the country. We've got nearly 40 off them now and obviously amidst Covid 19 and they're now going virtual. So do you have a lot on our website and get the support that you need?
Fantastic. And I guess the first real priority for this episode's focus is if someone suspects they have, or has this specific condition, how and where can they find help? Where would you suggest they go to..., to find this help and information?
So if you're experiencing symptoms, the first step is to go to your GP and when you go to your GP, what I'd really recommend is taking a pain and symptoms diary. So on the Endometriosis UK website, which is www.endometriosis-UK.org. We've got a number of resources on the condition ranging from how to get a diagnosis to what treatment options there are available and so on and on their we've got pain and symptoms diary so you can actually track your symptoms for a number of weeks or months. So when you go to that first appointment with your GP, you can show them what symptoms you're experiencing and perhaps what time of the month you're experiencing them so they can see that this is a problem that has been going on for some time and what support you might need.
Fantastic, and within the episode audio drama that folks have just listened to, Kirstin's character, Freya, does document kind of the feelings of pain that she has and the immobility that this pain causes and the kind of just being in that pain as well.. and how else might the symptoms manifest? What have you found - things that might potentially be things that as a range people might experience?
Yes symptoms range from person to person, So I think it's really important to to understand if you are experiencing any of these symptoms that you might not have all of them. You might just have one or two and symptoms range as a safe from person to person, but can include chronic pelvic pain, painful periods, painful sex, painful bowel movement. So pain when you going to the toilet, tummy ache. Infertility as well, but yes, it is really important to look at the variety of symptoms and see how they might might be affecting you and also accepting that is different from person to person. So you might even know other people with endometriosis, and you might have completely different symptoms to them. But you might still have the conditions, so it's important not to compare to what the people as well, so keep one of these pain and symptoms diary and see what your symptoms are.
Excellent advice. Thank you. And with regards to other social media places to look, Where could people also find information or help if if they wanted to broaden their kind of research individually?
So the Endometriosis UK we have central media channels and social media is a really great place, but it's also the devil as well. In that there is a lot of misinformation out there about endometriosis, and it's it's really important to go through to sources that are recognised and there is input there from N HS professionals, So definitely have a look on the endometriosis uk Social Media page is where you can connect with other people as well. We've got an online forum, So if you do you have any questions or you want to just connect with other people and ask them how they're feeling, then definitely do go to our online forum as well.
Brilliant. And with regard to that, are there any specific people who might be worth following on social media who either BLOG or have really interesting information that people might find useful?
Yeah, I mean, there's a lot of celebrities that have come out and said that they've got into me traces. So Emma Barnet is a great one- the BBC journalist, and she's just written in a book called Period, which I really recommend. She's definitely worth a follow, she talks very openly about her endometriosis journey, how it's impacted her She's definitely worth having a look at.
Fantastic and books as well. Is there any sort, either audio books or other things. I think KirstIn mentioned as FREYA'S character. 'The doctor will see you now'. She found useful thing to look at. Is there any other source material there that you suggest people might want to have a browse on?
Yeah, definitely. And so there's a book called Endometriosis. How to Manage Your Symptoms, which is written by Carol Pearson and Andrew Horn. So Andrew Horn is a trustee OF Endometriosis UK. But he's also a gynaecologist and a researcher at Edinburgh University, and that's a really amazing guide. It contains absolutely everything that you need to know about endometriosis and treatment on, also, how to get peer support. As well. So I definitely recommend reading reading that.
Brilliant ...and I know Freya's character also mentioned sort certain apps to track things - is there Anything that you could recommend folks look on with regards to Pain diaries or otherwise using apps at all?
I'm not sure in terms of apps - definitely keeping keeping a diary tracking your symptoms. I know there's a lot of kind of apps out there that you can you can use, so I guess just have a look. Look through them and see which one works best for you. And I think most important within that is one where you can track your your feelings and your symptoms daily, because symptoms can change on a week by week basis. So yes, something that you can input into regularly so you can show your GP when you go and see them. The variety of symptoms that you are experiencing
Excellent having the evidence there kind of will help your case to potentially push forward some potential treatment options, I imagine?
Yeah, exactly. And your diagnosis does take a shocking average of 7.5 years to diagnose. One of the reasons for that is that there are a lot of overlapping symptoms with other conditions, so GPS will often want to rule out those symptoms first....because the only way to definitively diagnose endometriosis is through laparoscopic surgery, which obviously is is a surgery to have so they will want to rule out other conditions first. So the more information that you can take to your GP, the more helpful it will. It will be..and important to remember as well that it is a two way conversation when you go to your GP, and if they're suggesting treatment options to you that you don't want to go down, then having that information and being empowered by the information that you've kind of researched yourself will enable you to have that conversation with them.
And are there other places of interest that might be useful for anything we haven't mentioned so far that you think might be useful to you? Someone to explore?
Yeah, definitely. And so I would definitely look into what treatment options there are available to you. So, as I say when you go to your GP, you know what's on the table, if you like, and you can discuss each of those with them. There's also something called the 'Nice' Guidelines, which sets out the pathway of care that people with endometriosis symptoms should be receiving. So it's definitely worth having a look at those. You can see them on the Endometriosis UK website and then from that, you can see exactly what pathway your GP should be putting you on if you're experiencing symptoms. So if your GP or medical practitioner isn't following those guidelines, you can actually say to them, you know, these are the Nice guidelines. Nice quality, standard guidelines on endometriosis that sets the PRECEDENTS really for how care should be provided and...This is what I'd like you to follow.
Superb. And I'll try and put some links as well from their website onto the show notes. So you can just click on those and hopefully find some information. Well, thank you so much. We've just completed our first episode and I hope you found it useful. And Faye, you've been amazing. That's wonderful information. So thank you very much.
No problem at all. Thanks for having me, Sarah.Thank you so much to all of the amazing folks have contributed to this glorious episode! To my brilliant cast playing all of the soldiers as well as Diane Alexander as Flo. Lara Parker as Gabby, Lucy Shirley is Rachel, Fiona Thraille as the Anaesthetist and Soldiers and introducing Kirstin Stanfield as Freya. Music was by Matt Hutt. Executive Producer was THE hugely amazing. Fiona Thraille, who also produces Dashing Onions Audio. This Audio Fiction was written, directed and produced by me Sarah Golding, who also played Charlie having as much fun I possibly can...We honestly, truly hope you've enjoyed this Quirky production... there are two more episodes based around KirstIn, and Freya's story of coping with endometriosis. So please, please do share wherever you think It could be helpful , and rate and review this on any podcatcher so other folks might find it ...annnd Also, feel free to contact us with any thoughts or queries or reviews. Or whateve you like really? On QUIRKYVOICES@GMAIL.COM. Thanks so much to Faye farthing of Endometriosis UK, for some insightful information on whereand how to get help on her interview also continues next week on how folks can actually try to help themselves. So ...show notes are there for your delectation and delight to browse and find useful links and places to go, and please do do get help If you feel you need it, don't wait. Okay, As far as I'm concerned, you only get one life, okay? And just make sure you're living your best one! If you'd like to support my work, feel free to check out Quirky voices Patreon or KO-FI accounts - much appreciate it If you want... and finally ...THANK YOU! For listening! I know I'm rambling on aren't I?.But I have to thank you, because you're the reason to do it. Right? So, KEEP talking or, why not even start talking? Organise a coffee morning with folks you love. Ah gwan. Even a virtual one is going to give you the opportunity to connect. Yes, and, Well, go on, go out there and live your best lives because... you're amazing. And don't let anyone tell you any different. You got that?! Groovy! Till next week.. TATAAA...