SARAH:   0:12
BOO! Hallo! Its me - Sarah Golding!  And welcome back to another episode of Anyone F'Coffee, our New women's health podcast ....with HUMUNGOUS thanks of Sarahness, and perhaps from anyone who has found this podcast useful so far. to the PULSE AWARD Funding from the Wellcome Trust  AND British Podcast Awards -  Thank you. So much!  Now we have two more jam packed eps focusing on endometriosis for you, with the lovely Kirstin Stansfield sharing more of her real life ways of coping - or not -  with the condition. Now, due to popular demand, we kick off with the continuation of our audio fiction wot I wrote with the loveliest cast in the world. In this episode, you'll learn how Kenneth Williams Impression MEEEAAUUUU That doesn't even sound like him - help with period pain. Why Freyer  has kissing ovaries- bless her. And... We are introduced to an absence.................... ....................................................................................................................................................................................................................................................................................................................................................................which is what folks who have or treat epilepsy called a moment of... let's say, confusion and disorientation that some epileptic folks like Rachel often experience without knowing what they are. Gabby reveals she bloody DOESN'T want to have any more babies...after hinting at her issue with post natal depression, and we explore that next in the episodes after endometriosis.  And Rachel learns that ablation is certainly not kinky. Enjoy.  

CHARLIE:   1:44
If she's about to have an operation, how do you think you feels you dillock? 

RACHEL:   1:47
All right, you lot. Ignorance is bliss. Arrogance makes you a twat. Sorry, Freya. You were saying  

FREYA:   1:53
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. Need to lie down before you fall down.  

RACHEL:   2:04
Maybe take the hot water bottle off your bum first, though. Don't  want it bursting.  

FREYA:   2:09
Can you help me get them all off? I'll top them up in the mo. They're not hot enough now.

CHARLIE:   2:14
I'll do that for you. Give 'em 'ere.

FREYA:   2:16
So for some reason, in some women...the cells that normally line your uterus - 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    

RACHEL:   2:38
Like...your chin?

CHARLIE:   2:38
Chins! (LAUGHS)

FREYA:   2:38
Possibly NOT your chin. But it has been known to make its way up to the nasal cavity. So some people get nose bleeds every month too.

RACHEL:   2:50
Euurgh. How does your nose know when to bleed, If your uterus is down there?  

FREYA:   2:56
Well, these these cells is bad. Cells are affected by the same hormones as ..as their endometrial cells. When it's your time to bleed that month, they also bleed. Which essentially means that you have internal bleeding... every month... because there isn't an outlet for the blood. It just kind of ...hangs around, and your body has to find a way of breaking that blood down, which can be very painful. Oh, and I often have about two weeks of brown blood before my period starts, which is apparently one of the signs of Endo. If you've got that, best get yourself checked and, well, it's Endo. Endo is... something that I've probably been experiencing my whole life since my periods started. So we're talking right back to when I was 12 /13.  

CHARLIE:   3:47
'bout... 10 years ago, then?

FREYA:   3:50
And... well, they've got progressively worse.

CHARLIE:   3:53
Wanna Coffee Freya?

FREYA:   3:54
Please - no milk, thanks. I spent a lot of my later teenage years in my twenties on the contraceptive pill.  

RACHEL:   4:03
Me too.

GABBY:   4:04
Shut up Rachel!

FREYA:   4:05
To try and manage the pain and heavy bleeding of which did kind of help.  

RACHEL:   4:11
So is it just like having period pains then? Because mine are... Alright.  

GABBY:   4:17
Me, me, me. Everyone has it differently. Rachel. So what's it like then? I mean, why d'you need the op?

FREYA:   4:22
At it's worst,  the pain is so intense that I can't remain upright.

RACHEL:   4:27
On your back again, love! (Charlie gently hits her) OW! CHARLIE!

CHARLIE:   0:00
I was givin' you a biscuit!  Shhh!

FREYA:   4:32
It feels like I constantly need the toilet. And I feel like I'm gonna be sick at the same time. If I tried to stand the blood rushes to my head, making me crash to the floor. I get too hot. I sweat, my clothes are soaked. If I can, I'll try. Make it to the bed or sofa If no, I just lie on the floor next to the table, The corridor, the bathroom in the museum's thumbs you call would like Right now I still need the toilet. We have to wait for the energy to get up ...and the pain for my bowel cuts above the other pains in sharp bursts. But might only last 30 seconds and I have to breathe through it., But it will make me scream out ...often over breakfast. This on his own, happens almost every day, but on flare up days, it's worse. And then it's gone. But I still need the toilet. Sometimes it causes diarrhoea, but it feels like I'm passing razor blades.  

GABBY:   5:32
  Oh, God, sounds horrific.  

FREYA:   5:36
I'll feel uncomfortable for the rest of the day like I need to go to the toilets and sometimes I do. But often I don't Discomfort stops me from sitting with ease. Klein Town is the only way to be comfortable. I feel big. I look big swollen it -like four or five months pregnant. My clothes are too tight.  

RACHEL:   5:58
You look amazing.  

CHARLIE:   5:59
Yeahhhh

RACHEL:   5:59
Where was the painful  

FREYA:   6:01
No,  don't. The pain starts just below my rib cage and stops in my thighs....my pelvis and my back. My legs feel heavy like I've been running. Feels like there's a pit in my stomach, and everything is being pulled inside into the black hole- like pit. Right now, I also have a really localised pain at the top left side of my pubic bone. It's sharp but also numb, and at the same time my whole stomach folds in on itself. The muscles in full cramp. I can't stand straight, and I long to be curled up, foetal style. Painkilers barely touch the edges of the pain. The best I can do is go to bed and pass out until the pain subsides. I can't always do that. When I finally stopped bleeding, the bloating remains, and it feels like I've been beaten - repeatedly kicked in the stomach. But the fog has  lifted, and I feel so much more like myself. Then two weeks later, I ovulate, and it kicks in again, although slightly milder. If I'm lucky, I have a week and 1/2 to 2 weeks pain free in a cycle.

RACHEL:   7:15
Jesus that sounds bloody, bloody, bloody awful by name and nature.  

FREYA:   7:21
It's not pleasant. And when I decided to start a family and come off the contraceptive pill, they then got progressively worse again. And it took us a long time to get pregnant.

GABBY:   7:33
 I didn't know that - took me three tries  

GABBY:   7:36
Like a coconut shy. I got one in three goes once   

GABBY:   7:40
Rachel, Gabby let’s leave your fairground ride mentality out of this - let Freya talk.  

FREYA:   7:45
And as you know, we eventually did get pregnant. After two or three years,  

CHARLIE:   7:48
HURRAY

RACHEL:   7:48
I got to say. You do make beautiful Children, Childs? Kidlets?  How do you say one kid again?  

CHARLIE:   7:56
Yeah, GTanja is amazing. Cleverer than me.   

GABBY:   7:59
Thats not hard

CHARLIE:   7:59
Oi!

FREYA:   7:59
Well yeah,  it did happen eventually, but...just to go back a bit . In the throes of trying to start a family, and with my track record of seeing a doctor every six months since I was 13,  and speaking to my doctor about trying to start a family, I was referred to a gynaecologist who did do some tests. But nothing really came of those tests. I don't think they were really looking for endometriosis. It wasn't on their radar, I guess for whatever reason. Oh, I just I just need to change position. Um, so it kind of got missed ...and then I was lucky enough to get pregnant. And I think I'd been prescribed Clomid  

RACHEL:   8:38
Ooh is that an anti depressant?

CHARLIE:   8:38
Pass us a biscuit Gabs?

FREYA:   8:41
No, it's a kind of fertility treatment, but I hadn't actually taken any of it. I think part of the relief that actually there was something that might help possibly help in the process, you know, psychologically.

GABBY:   8:56
Yeah there’s a lot to be said for those psychological effects. My sister thought she was barren. She got a puppy. Three weeks later - bun in the oven  

RACHEL:   9:05
Bun?

GABBY:   9:05
Baby,  

RACHEL:   9:07
Um, makes no sense -  Why did she put her baby in the oven?  

GABBY:   9:14
She didn't. IT’S A METAPHOR.

RACHEL:   9:15
Oh...Oh, dear.  

GABBY:   9:19
Have the pack.

GABBY:   9:21
(ECHO EFFECT) Yeah, well I guess there’s a lot we don’t know about the effect that I can have on our...cycles and everything. PMA PMA Eh Rachel? Rachel? 

GABBY:   9:30
Have the pack.  

CHARLIE:   9:36
She’s doing that thing again. Rachel! You alright love? You’re drifting off there. 

GABBY:   9:36
 Have  the pack

GABBY:   0:00
Has she got narcolepsy? She looks awake but asleep. Look her eyes twitching a bit

RACHEL:   9:36
Wait. What were you saying?  

CHARLIE:   9:47
Where did you go to my lovely?

RACHEL:   9:49
Nowhere. I'm right here. Pass us another biscuit .

GABBY:   9:52
Have  the pack. Give it here. (Pass biscuits) So, Freya, what happened when you'd had Grania?  

GABBY:   10:01
Yeah, well, after I had her, my period's didn't return for an entire year after she was born, which was amazing. So that was about two years without periods.    

CHARLIE:   10:12
That  was your grace period yeah?

FREYA:   10:15
For the next kind of four or so months, Things were great, and Actually, the pain was non existent. Then it hit again. Like 10 tonne trucks of pain.

CHARLIE:   10:27
So you went back to the docs, right? 

FREYA:   10:29
Yep, I said to them... I know what it's like now not to have pain. And that kind of reasserted the idea that the pain I had been living through wasn't really sustainable, on wasn't normal.

CHARLIE:   10:43
Whats normal huh? I mean, can't fathom that can we?  Because you can't equate my pain threshold to yours. Ow! Don’t pinch me!

RACHEL:   10:52
I pinched myself.....And it didn't hurt. So it's scientifically proven that you're more of a wuss than I am.

GABBY:   10:57
Shut up, you two. So ....did they send you for more tests and stuff?

FREYA:   11:01
Yeah, I had scans and tests before they found cysts, but they weren't like bad.

RACHEL:   11:07
Surely, all cysts are bad? Oh, wow. I just saw something. Are two cysts, sisters? Sisters! Get it? (ALL REACT)

FREYA:   0:00
 These ones were like a natural part of my cycle. So they grew and then dissipated, as is usually expected with this kind of thing.

RACHEL:   11:26
It's all very complicated, isn't it? I've never really thought about my cycle's much regular as clockwork. Maybe I should just get pregnant to have a break from a period, so....

CHARLIE:   11:35
Oh, my God. That is one of the most ridiculous things you've ever said! Being a parent is crazy hard, perpetually, and you allllways feel like you’re getting it wrong. Pass us another biscuit.

GABBY:   0:00
Yeah don’t joke about that , bloody hell.

CHARLIE:   11:49
Ahhh are there any of these that aren’t broken?

GABBY:   11:49
When Daisy came along. I thought I‘d made the worst mistake of my life. It’s bloody hard, BLODDY  hard. Always.  

RACHEL:   11:55
And...you want another one? Nutter.

GABBY:   11:56
No, I bloody dont!

FREYA:   11:58
Yes, I bloody do! After a few more pokes and prods and No baby, I saw a fertility specialist through Dan's health insurance. Luckily, we could even consider doing that, I know. And the G P and the systems conspired, And within a month I was in surgery and.... they went in and cut what they could find out.

GABBY:   12:20
Shit, That sounds horrible.  

RACHEL:   12:21
Endo the world.  

FREYA:   12:23
Yeah, it is. I guess we all know what our own pain threshold is, but  

CHARLIE:   12:28
I gave birth just using gas and air - I’m a superhero. Me!

FREYA:   12:31
Sure, hashtag legend, but with pain on how we experience it. Well, as you were saying earlier, it's true. Mine could be different To Yours or yours or yours. Don't pinch me, Rachel!  For all I know, I could have been experiencing the world's worst period pain ever experienced in the world forever and not know that that's not normal because, well, how do we know what it is to be normal?

RACHEL:   12:57
Charlie's not normal .

CHARLIE:   0:00
Hahaaa beeyatch.  

FREYA:   12:59
Yeah. Oh, a wave. Hang on. I, uh ....a wave....(RACHEL WAVES)

RACHEL:   13:06
Hiya!

GABBY:   13:06
She means a wave of pain you idiot.. You feelin’ okay Freya? 

GABBY:   13:09
Jus’...let her Get a breath. She's having some kind of ....surge thing  

GABBY:   13:16
Oh I get that too. When it's bad.  Yeah, When It's bad, I Try and adopt the penguin position. Me and Caroline used to do this. So like this. So ....come on let’s kneel....kneel den and put your head on the floor, and do your best....Kenneth Williams impression. Say. “Oh, my aching Womb! “ I find. It really helps. Come on, try it. All right. Ready? All of you. You know, you could just stay on the sofa there Freya.  Okay, Come on. AON your kneeS. That’s the one. Ready? J So... 3, 2, 1 

ALL:   13:47
Ohhhhhh my aching wwwooommmmb! (LAUGHING)

CHARLIE:   13:55
It helps me out anyway. Um, Ill just top these botters up shall I pal? If it will er...if it will help? 

FREYA:   14:02
Thanks. Sorry. I feel better now. Sometimes I just cramp in waves and I can't focus on anything. So basics are I have artefacts in my womb area. And I got the go ahead for the operation to clear it out for the second time as I had a MRI that showed that there's still a problem.  

RACHEL:   14:24
And they go in what, like up you?   

GABBY:   14:26
You’re obsessed?  

RACHEL:   14:27
No, I just didn't know. Like could they go in from here?

FREYA:   14:33
They don't encourage deep throat approach, no ....better from this end.  

GABBY:   14:38
Freya, you are so not being you right now.  

FREYA:   14:41
I am I'm always me. No. They made three incisions, one in my belly button, then one kind of directly down just above my pelvic bone. And then and one to the left so that it's kind of like a triangle.  

RACHEL:   14:55
Um, I had a triangle of my last waxing.  

GABBY:   14:58
You can gonna show us as well?

RACHEL:   14:59
You wanna see it?

RACHEL:   15:00
No. Carry on, Freya. I want to hear all the gory details about this op.

FREYA:   15:04
Okay, so then they inserted instruments in there with cameras so that they could then go in and see what's going on on. The thing with endometriosis is that it could be suspected, but it's only diagnosed by actually going in to see it and confirm it. I was lucky that through this medical insurance thing, I could have a diagnostic. Laparoscopy.  

RACHEL:   15:25
A What now?  

FREYA:   15:26
A diagnostic laparoscopy.  

RACHEL:   15:28
Sounds like a religious cult.  

CHARLIE:   15:30
Don't you say that word?  

FREYA:   15:32
No. No, it's basically a laparoscope - a kind of telescope is inserted into you and So you can see.... I don't know.... the ovaries, fallopian tubes, except without causing damage. They  assess the area for Endometriosis  or other blockages that might be causing the infertility. So they were able to do that and treated at the same time, which I know wouldn't have been ableto happen so easily on the NHS.  

GABBY:   15:58
So they found it the endmeeery...thingy

FREYA:   16:02
endometriosis. Yet they did, which was good in a sense, as it was good to have the answers as to why things weren't happening, and why I've been feeling like this, and that everything wasn't, you know, just in my head.

CHARLIE:   16:15
So like ...a lot of pain, Then? Like...all the time?

FREYA:   16:20
for the days when I have my period freely painful, and I will be like I said on the floor with pain wherever that happens to be. Oh, that explains earlier. Yeah, I'm sorry to scare you. I mean, a lot of the times when it's truly bad pain goes down the top of my legs linked in with back pain as well, and it's just it's just pain and to the point that getting through it like when it was just me and going you and Dan's going off to work on. I meant to be doing everything for her, but I can't. I can't even lift myself up to sometimes let alone her, and it tends to hit me first thing in the morning and trying to get her dressed was no Helen Impossible. So I just have to get into her bed and she reads me storeys and we cuddle because I can't I mean, because I can't do anything. Oh, right now, the pain is just it's all encompassing. I don't think probably I'm just I'm dealing with every bit of now to keep the pain as much under control as I can, and then for the rest of the time, fine. Totally fine. No pain. That's what makes me feel like, Is it real? And in between times and when I go to the doctors, I have to ask Dan what I was like, I'm going through because I just hope remember, because it's just seething brought pain. You're just in there, innit? But aware of what's actually happening you just you question yourself after its it's kind of weird. So you won't remember us coming here. Are we like a dream? Oh, my God. Are we actually in a dream? Can you prove that we're No, don't be ridiculous. Rage caught. What? Cox you all

spk_1:   18:15
at the moment? Same. L say mo for you in and

spk_2:   18:18
at the time, a sub. Yeah, I've bean scraped, but I don't know It's all come back So I'm just feeling it. Feeling a bit tender today, actually, Can you get my naproxen? Gabi, I think I left it by the cattle show.

spk_3:   18:37
I think he can really start to appreciate and understand how the being in the all encompassing pain can totally debilitate some women for most ofthe all part ofthe every month. And if that's you, I hope you're treating yourself well, sincerely. So if you do know your pal has this condition,

spk_2:   18:58
why don't you just give

spk_3:   18:59
him a cool try and do something nice for their mortar and new water bottle or something? Right Way should totally make some anyone for coffee, hot water bottles and please dio email us with any thoughts you've had or how this podcast may have helped you and I will read those out if there are any on future episodes. So email is quirky voices at gmail dot com, sir on two and a perfect kind of William's impressions onto customs. Second, very informative part of her interview. I began with asking her how the condition affect her daily.

spk_2:   19:38
I try not Teo

spk_4:   19:41
less effect the plans that I have. But there are days, you know, when I get up when I just don't feel like like doing anything. Um, a couple of years ago, we went on holiday on DH. My period hit, I think the day that we arrived on DH, you know, my periods, you know, at that time were lasting around about 10 days. So that was, you know, the whole of today and so that Khun B, that could be quite difficult

spk_3:   20:13
on with the gods, like people in your circles, what people do to be useful if they know that you're having issues on that, it's flaring up. I think, actually, now that I

spk_4:   20:25
am starting to speak about it, Mohr with people, the fact that they know means it would. They can recognise when I'm in pain on. Therefore they can kind of know what's going on without having to talk about it. They could all, you know, they could just ask a very simple question on, you know, they will then know from my response kind of what's what's going on rather than having to explain you're looking a

spk_3:   20:54
bit down today, or you Are you okay? So they

spk_4:   20:58
could just know you can save him. I am my period. And then they know, And then they can kind of sympathise, and they can help and kind of doing whatever they feel might help to alleviate those. Yeah, those things. So you know those? I said there are one or two people who do I kind of really know at work in various other places and also the kind of having started to speak about it with people. Then they open up. And you know, when you find out, more and more people are suffering or daughters have suffered or you you know that they know somebody who has been going through the same thing.

spk_3:   21:33
And it's good to hear that you found that useful, helpful, Teo. I mean, do you feel like it's been over a rollercoaster knife? You were comfortable. Yeah, I'm talking about Delta. I think

spk_4:   21:44
so. And again, I think it does help having had a diagnosis,

spk_3:   21:50
he's saying, What's wrong with the fish I have? Is this make your brother's house? Yeah. Yes. No, I mean, on the on the flip side of that what's not helpful that people might do or have done that make you feel so you'd always know. I

spk_2:   22:05
yes, in a way. You know, when you talk about it's always is that sympathising? Oh, yes, I have bad periods to look. But do you?

spk_3:   22:15
I don't know, because I don't know whether what I'm experiencing is normal or not, or whether what you're experiencing is no. Maybe everything that's happened to you is no thing. No. Now that's an interesting point. I mean, I just also wanted Teo revealed that you mentioned research and stuff. Where did you go, Tio? What did you do to have looking into strolled the Internet? Yes, everything is there before I actually that there were a lot off support networks on things like Facebook. I've recently come across Nancy look wonderful name who is

spk_2:   23:01
an American nurse? Merrick, the American

spk_4:   23:05
who has done extensive research into you and me choices. And I was kind of kind of grown from the research that she's done on DH has built up. So she has a Facebook

spk_3:   23:19
research group. It was not a support group. Don't go on there to ask questions that very clear Every so often you get, dude, ask this question to go and look in the file. So there's a wall of

spk_4:   23:28
this research in there for you to go on DH. Read up about the condition and the treatments on. They have a whole list off nook surgeons Amazing who are trained in the kind of particular type off surgery, which is excision surgery, which is with a laparoscopy on this kind of two. Things that you could do are there you can kind of burn off the tissue, which is called ablation. And then there's excision. So you were basically they cut it out on. Cutting it out is much more successful than burning off from has just been started listening to a book called The Doctor Macy You Now, which is all about about endometriosis, and they were describing it as killing off weeds. So you just burn off the

spk_2:   24:18
head of the down line,

spk_4:   24:19
then you know it's going to grow back. Where is if you go down to the reach and kind of cut out? Then it's much more likely to be

spk_3:   24:27
that Zoe Hart. Did you know that happening? I mean, if you don't mind are we able to talk a little bit about those who had two operations? So we talk about the 1st 1 So going in there, what were your thoughts about what this was going to do? It was going to achieve? Was it sort of the miracle and two things. What did you go in when I went in, thinking they're not gonna find anything? Okay, Well, yeah, on DH that it would just reaffirm that, you know, that everything

spk_4:   24:57
was just in my head and then it wasn't as bad as maybe

spk_2:   25:00
thought it wass, but yeah, I kind of thought that was at that point, I kind of done some reason. It didn't

spk_4:   25:07
really know a huge amount on DH kind of thought that they went in and they'd be able, Teo, kind of take it out on. Everything would be better her on, because I was also there for fertility at the same time. Kind of what, after the surgery had happened, as far as they were concerned, it was fairly successful. They've been able to get a lot of off thie tissue out through ablation, so through burning it

spk_3:   25:36
somewhere you awake during the operation, so you are out on your family on the intel, Okay? So which in itself is terrifying and so on And, you know, and that was also

spk_4:   25:48
one of the things that I was thinking about going in is how are gonna wake

spk_3:   25:52
up Absolutely every eye. Yeah, I've never been under yet and that we don't ever have to, but yeah, that's the whole thing, isn't it? Of that? And then you think of family and the what if some wise and all So going into that operation where they had the cover thoughts going through your head Yeah, and that stuffed, of course, has quite emotional, I think were the thoughts as well that it's either going to be that I've been making a fuss out of nothing. Will they find something and that changes things for them. That's a lot of emotional Bush going so that I mean, can you remember waking up from the operation?

spk_2:   26:31
I can't really

spk_3:   26:34
remember waking up from that first operation. What's the earliest you remember after it's happened? So I, uh I think being wheeled back to the rain, it is kind of where I what kind of almost comeback in tow wakefulness, if that makes sense, I think,

spk_4:   26:53
you know, technically, I had recovered and was awake, and that's why they were taking me

spk_3:   26:58
to prove you're not still under. Now, this is a little bit okay? And did you feel in pain at that? I did. Can you remember? Yes. I was in pain. Yes. So I was in

spk_4:   27:11
pain on DH. I'd ask for painkillers fairly soon afterwards. And so

spk_3:   27:15
they like screaming or just not screaming Just in

spk_4:   27:19
pain on DH. So they gave me. They gave me morphine injected in, and I

spk_2:   27:25
had Bean, all right, actually, up until

spk_3:   27:27
that when I was in pain, But I was okay and I was

spk_4:   27:30
up and I tried to eat something, and I think I might have even spoken to my husband on the phone on. Then the pain got worst. I'd ask for Samton painkillers. I haven't eaten enough. So they couldn't give me kind of regular painkillers. Ibuprofen, paracetamol. So they gave me morphine on, then almost straight away. My condition just rocketed on DH because it it can cause a lot of nausea. S o. I just felt really sick. And so then they had to give me anti sickness drugs as well. I was. I think that surgery I was first in for that 17 which was about mid day, and I was about to go home that evening. So it's kind of in and out. You know, as

spk_2:   28:17
soon as you're covered and you've had

spk_4:   28:18
something to eat, then you could go home. But because ofthe this dip I had to stay in and I had to stay in overnight.

spk_3:   28:25
We weren't actually sick, It just fell, wasn't actually sick and that she asked, felt like I was going

spk_1:   28:30
to be

spk_4:   28:30
sick. And I'm so it's so yes. So that was that was quite difficult and kind of coming out from it. But then

spk_3:   28:41
in the recovery period, it was that I was in pain. But actually, it was much more. The fact that I couldn't move particularly well was obviously having had abdominal surgery. Yeah, karma muscle. Exactly. They cut into the muscle so it takes quite

spk_4:   28:59
a long time for that to come back.

spk_3:   29:01
And have you had full naturally or there's the CIA knows that I'd had him Naturally. I was concerned. Would they do that operation if you have seasick Yeah, I I

spk_2:   29:11
think, actually, if you do have

spk_4:   29:12
into me Joses and you have had a C section quite often you tend to get and Dimitri aosis around your scar. So the napkin course more come. So, yeah, I think they would still do the surgery if you'd had a C section.

spk_3:   29:27
It's just above They didn't have to make a shaved little heart or anything on how long did it take you to properly? I feel like there's normal s your boat. Well, I guess it was lucky in the sense that that one was in the summer holidays. So that happened

spk_4:   29:45
at the beginning of August on DH. Then I was back to work kind of the beginning of September, so it probably had about four or five weeks

spk_3:   29:55
and and did you feel ready to get back to work? Honestly, all she do if I could have had another thing.

spk_2:   30:02
I don't know, really. I think I was probably

spk_4:   30:05
okay by that by that point, I think because they say that you need two weeks to recover, and after two weeks or about a week and 1/2 we decided to go up to my parents so that they could kind of help you look after my son on DH. We were there for half a week, and then we were gonna come back home again. But at the end of that weekend, we had all decided that actually, I wasn't in a state to go home. Tio, look after him on my own. Right was where is before, that my husband had taken time off work. Okay, since they have not harmed them. But yeah, I wasn't really in a fit state, Teo, Look after him on my own. So I stayed at my parents for another week, and then they brought me home after that week. So after that week, I was feeling better, and I could cope just about, but I wasn't allowed to lift him. Okay, Lift like sexists, too. So he was Yes. So he was three, but he likes to be carried a lot. So, you know, that was quite hard on things like getting in and out of the car. So you had to get himself. You get

spk_3:   31:17
to climb himself up to get in the car. But I couldn't lift him. So all of those things to someone is a bit of a pickle, which is not very much, but that must have been ready.

spk_4:   31:27
Yeah, And testing I get on, then I guess with the recovery in the first instant, actually, the pain comes from the gas. So and when they when they

spk_3:   31:40
do the surgery,

spk_4:   31:40
they pump your abdomen with gas, and they can see because they've got space to do what they need to do right on. Then after the surgeon instinctual up, that gas needs to escape.

spk_3:   31:52
Oh, okay. Okay. In an explosive

spk_2:   31:55
manner. Oh, well, it's funny because it tends to go to your shoulders. So you want your shoulders

spk_3:   32:01
that hurt. Wow. That's which is ready for areas are. Yeah, And so they suggest

spk_4:   32:07
that you kind of do get up on your activists. You can be in those first few days to kind of

spk_3:   32:11
help you disperse and move around. So how was the table that all come out? Everybody. Then I last time, so I think that probably about a week, But the fact that hurts it hurts. Yeah, that's very straight. Is basically sort Like what? Like a feeling like a tingling feeling. That's weird. Yeah. Yeah, unpleasant. Did you sleep. How was your sleeping? Generally with after that was okay. We'll be exhausted, rundown and okay. And also, it's the things that you don't really think about that kind of getting up from bed, Okay, Because we think, like, usually around, you just don't like muscles to sit up. So it's, you know, using your hands to push yourself that you don't necessarily think about. I mean, were there any other things that surprised you about that cover? A period

spk_2:   33:02
when I first came back

spk_4:   33:05
from the hospitals or the following day, my sister came over to help look after my son because my husband had decided to g

spk_3:   33:14
o tio the casino so smooth with best friend. Oh, the day after I had come out of surgery. Okay, on. So my sister

spk_4:   33:26
came to help with the recovery on DH. I think I kind of felt like

spk_2:   33:31
I could do more than I should have been doing,

spk_3:   33:33
So I think I really pushed

spk_4:   33:35
myself a bit too much. Yeah, on therefore, my recovery was a bits

spk_3:   33:40
that were then I'm sure that would resonate with a lot of you. So you need to be not so naughty. and just actually realise you've just been through surgery second time round. I was much more careful, a lot more rest, but actually it still took me justice long to recover so on. So how long is there between the first and second? Why have they done so? I had the first surgery

spk_4:   34:02
in August, and then the 2nd 1 was in January. I see it as I was saying that because it was fertility as well as dealing with endometriosis. They kind of said it. Once we've

spk_2:   34:12
dealt with the endometriosis will kind of give you, like, three months to see if you can

spk_4:   34:17
get pregnant naturally and if not them, or start exploring other routes. But in

spk_2:   34:22
the meantime, they

spk_4:   34:23
wanted to do some more tests that they actually sent me for a memory scam. Right? Eso went for a memory scan, which is unbelievably noisy.

spk_3:   34:31
Yes, talk us through that. That's the big machine that you get big. But she's certain so didn't do on DH. Things do. They were around you in the they put a thing

spk_4:   34:43
around whatever bit they're looking at, which obviously was my optimum. Luckily, because that's the area that they were looking. I didn't have to be

spk_2:   34:50
completely in this. And my head was just about sticking out, which I guess it's

spk_4:   34:55
a good thing. And then this worrying machine going on and they

spk_2:   34:58
play some music to try

spk_4:   35:00
and cover up the fact that there is

spk_3:   35:01
sort of sound. And then you have to lie really still for a lot of digging your music. Remember, it's just a local radio station. Say, e say that I had that on DH has kind of thought nothing of it. That was just kind of routine. They were just checking up to see because they knew that they

spk_4:   35:29
haven't managed to get it all. Okay, so it's just kind of checking how much was still there on DH then? Kind of a week later, I had an email saying,

spk_2:   35:40
We've made you a

spk_3:   35:40
disappointment. Teo, See the

spk_4:   35:42
gynaecologist again on this date on DH, we'd said that it would be kind of three months before I would see her again. Okay. Okay. Well, something

spk_3:   35:50
else, but this is the report. Wasn't a thinking going on there.

spk_4:   35:54
Eso went in to see them then and said we've got the results back of the M R I on DH. I had what they called kissing ovaries s o my ovaries hod enlarged right in because there's obviously only a certain amount of space that you've

spk_2:   36:13
got in your pelvic area.

spk_4:   36:16
When they are inflamed and they get big, they have to move towards each other because that's the only way that they can go. So they had moved towards each other and therefore behind my uterus, rather than being to this side right, which was causing problems. And they they thought that there were and Dimitrios is adhesions connecting them together. We go OK on DH. So basically that they would need to do more surgery, Teo, then go in and try and move those back. Because obviously, if they're close together, then they're not gonna function properly and said therefore so close the cycles. Aaron out and ovulation doesn't necessarily work as it should be. And therefore, that is the most likely to be the cause ofthe but

spk_3:   37:00
romantic ovaries asking, Have you seen? Thank you, Avery. Thanks. Let's go back to

spk_2:   37:06
Teo that feel

spk_3:   37:10
any different? Did you know did you have any different opinion? And I think I think it was always there. I don't think that was something that happened since surgery. I think just because they weren't looking for it, they

spk_4:   37:24
didn't. They didn't find it at the time. And as I said, they knew that there was some areas that they haven't been able. Teo get into to remove it. So then I was referred to you a

spk_2:   37:36
more specialist

spk_3:   37:37
specialist. But the all these amazing people did Had they seen kissing every before They had seen kissing her ovaries before and dealt with him on several occasions

spk_4:   37:46
on DH. So it must

spk_2:   37:49
have seen Doctor maybe in November. Time,

spk_4:   37:53
October, November on DH. Kind of planned in surgery for the new

spk_3:   37:58
year. So it kind of gave me

spk_4:   38:00
a bit of time, Tio. Make sure that I had worked, that they the kids, could do what? I was not there because I knew

spk_3:   38:05
that I would be off for a minimum of two weeks. That's a really stressful thing to plan and do to his neck. You know, actually, one day off is more stressed than its What? I still plan that they're letting you go in. You know, rather than

spk_1:   38:23
take the time that you

spk_2:   38:24
really should

spk_4:   38:24
be at home recovering from whatever illness. She might have been crazy. And yes, we went for for just after Christmas on DH that he suggested that I also take some menopause in juicing drugs. So

spk_3:   38:41
what had you heard of that before? Doing so Mind your

spk_2:   38:45
head. Yes, because our mutual friend who also has into Beatrice's Yes,

spk_4:   38:50
I had been on it, so So I kind of knew about it from her. And so you kind of suggested that I went on that from, you know, a soon as I had seen him until my surgery just to allow everything a bit of time Tio recover for information to go down. So that therefore when he went in to do the surgery, it Woods, you know, it would be be more successful. So then kind of go freely prepared for everything that the menopause might be throwing at

spk_3:   39:20
me Spoke to various members of staff at work who were going through it naturally. So you know what I would be very

spk_4:   39:30
was given a chai

spk_2:   39:31
tea to take

spk_4:   39:32
the same time on DH. Then by the time that I'd actually managed to get hold of this drug and taken it to the nurse. It was an injection that you had.

spk_3:   39:44
So she had to do the injured. She had to give

spk_4:   39:46
me the injection on DH, then takes kind of three weeks for it to actually kick in before it all happens. So why should I didn't experience that? Many ofthe the side of

spk_3:   39:59
things just feel different, but it was fine

spk_4:   40:02
and actually that first month where I had it, I still have my period as well. So I don't know whether or not I actually made any difference toe to the surgery. I think kind of if I'd have had it for a

spk_2:   40:14
couple of months in the run up

spk_4:   40:16
and then maybe that might have done. But that's also probably one of the reasons why after surgery, my period's took quite a long time Tio comeback, as's an after effect off that drug, talking about

spk_3:   40:32
the going into operation, the second bruising along with how different was that was an experience, it wass. We was worried before about the general. I wasn't so worried the second

spk_4:   40:45
time about not waking up. I was worried because the first time that it had happened when they put me under. It was really painful. Right on DH. I hadn't really Bean expecting that Teo happen. Going to be painful. So where'd you say that? Where did that Rather first. So they give it to you in an injection, so they put a drip in already, and so it goes in through there. So the second time, I spoke to the uni thesis and said, I'm really worried because you're pretty hurt. And he said, Yeah, it is going to work because essentially, what we're doing is we're injecting poison into your bloodstream right just before I go in. But you said, you know, we will try very best to make sure we get a big vein to put it in on. Then it shouldn't be so painful. And does

spk_2:   41:35
that help? Help? Because I knew that.

spk_4:   41:37
Then they were aware that I was worried about it on DH communicate, communicate will definitely communicate with them. Any worries? And, you know, even those ones about him worried that I'm not gonna wake up and tell them that that's how you're feeling because that is something that they deal with every single day. Because every single day people are going in fourth surgery and going through exactly those same feelings. And so yes, So there were several of them there. Well,

spk_1:   42:03
putting my hand trying to

spk_3:   42:04
get big vein on DIT didn't have as much. The second time hasn't done anything yet. He said they were gonna find a big fan like it and again, so into surgery and in century

spk_4:   42:17
and then kind of It's crazy. They come after both times I come to speak to you after your surgery. Once you're still kind of been very David and

spk_2:   42:28
saving. Here are some photographs we took of your This's what happened, marks off him

spk_4:   42:35
on. Then this time again, I touch painkillers after surgery in again. I'd suffered with sickness,

spk_3:   42:45
so it was easier to clothe him. And this

spk_2:   42:51
time I was interesting because last time I

spk_4:   42:53
was in lunch time and was meant to go home at the end of day. This time I was in first thing in the morning. We get up ridiculous time in the morning, so we had to be there by eight o'clock. There's an hour's drive away on DH, so I was in surgery by like nine o'clock in the morning. But I wasn't expected to go home until the following day s o different hospital. Different procedures again. I had the train, and this time I'd had morphine again. This time I had are more so a syringe in my mouth rather than directly tube Andi,

spk_3:   43:29
that's just liquid into your mouth. Fires like, Just like like a kappa. Ls your tio again?

spk_4:   43:40
I suffered sickness and on DH. First of all, they gave me some anti sickness medicine. I was meant to just go under your tongue, and that was meant to help and making a difference. And then they gave me an injection in my leg,

spk_3:   43:53
which was really painful and says with the nurses, Go to I'm so sorry. Doesn't normally those ends. Okay,

spk_2:   44:00
I didn't warn you that it was going to hurt because I didn't think it was

spk_4:   44:03
energy that was quite painful for you. At least a week and 1/2 are very often so the whole site, Yes. Yeah. Okay. Yeah. And so that the other came to speak to you after the surgery. Ross, you're still kind of not really with it on DH. So at that point, he said, actually, the end meet Joseph was really quite severe into the first time. She described it as being a four or five out of 10 which is another way of describing because they actually do have a scale of describe again to meet us as they have on a scale of 1 to 4. So I kind of assumed that meant that I was maybe about two on that scale on in this surgery is that your four are a stage four, right? So kind of that it was really a lot in there on DH. He had used a mixture off ablation an excision, so he had cut some of it out. But it was he needed to burn some of it away in order to get to the deep part. But even then there was some areas that he decided not to tackle. So I have what's called Recto, Vaginal and Dimitra assistant, which means I have adhesions or thes sells connecting the back off my vagina to my rectum. Goodness on DSO. Any surgery in that area is going to be possibly life changing in the sense of it's

spk_3:   45:34
important. Those are important places. Syria's eso

spk_4:   45:38
damaged. Why either of those could be could be life changing. So he signed. Have said,

spk_2:   45:45
you're probably still going to experience pain

spk_4:   45:48
on DH. Possibly when you finished having your family, then that's something that you might want to consider looking into. Yeah, So, yes, that's so long A long, long term on DH. Unfortunately, that is the one area that probably causes me pain every day.

spk_3:   46:08
Right, Rico Zone really wide. More so Now I know why I'm truly grateful to custom for sharing what obviously normally very private things, I guess because off the stigma of talking about mental health and all that goes with that and, you know, doing my little bit to get people talking. I mean, I'm not advocating that you call your powers up just to ask them what their periods alike. But I don't know, just know. And this Fae points out that the most important thing is that you also find time in every day to be kind to yourself.

spk_2:   46:46
Well, please have a little look out for Nancy nook the American

spk_3:   46:50
earth. I'll try and put useful links on our show. Notes. Do let me know if you've got any great resources or blog's saw anything of use we can share too. And I'll do that and put that on there too. Everything is on the quirky wishes website. And

spk_2:   47:04
remember on this day, tomorrow, every day do something

spk_3:   47:09
nice for you. Go on. In the second of three interviews with Fei from the enemy T ASIS, UK Charity, we discuss how fix with all suspecting they have this condition

spk_2:   47:22
other than

spk_3:   47:22
making an appointment to see their GP can help themselves. I am very lucky to have Faith Farthing back Houthi campaigns and communications manager from endometriosis UK Welcome, Fay. Welcome back.

spk_0:   47:38
Thank you so much for having me back right to be talking to you.

spk_3:   47:41
I know that last week's information he gave was been absolutely useful. So thank you so much for that. Today's focus really is on the individual on DH. I wonder if he can help us out with information on how people with this condition of anonymity choices or that they suspect it can help themselves. What can they do that proactive?

spk_0:   48:02
I think that the 1st 1 is to just look after yourself, really on be kind to yourself and accept the endometriosis is a long term condition. This isn't something that is going to go away overnight, and so to be kind to yourself with that and find what works for you. And the second super have is empower yourself with knowledge so you know your own body more than anybody else. You know your body more than any medical practitioners, so empower yourself with knowledge that's out there on the Endometriosis UK website. We've got a number of really helpful resources and so much information on their Andi, I think, is really important. Tio have that knowledge. So when you are going to your GP or you are going to your gynaecologist with your with your symptoms, you've got the knowledge behind you so you can have that two way conversation. And you know exactly what care you should be provided with so you can challenge them. And if that's not being being received, and I think the second most important thing is to connect with others, I think it's so important to connect with other people that are in a similar situation to you, obviously your own support network, so your family and your friends and your colleagues will be a huge help to you, but I think there's something really important about connecting to other people that may have a similar storey to you. So you can you can share your experience. You can gain from that. Their knowledge. Ahs Well, so we do wanna enter me traces UK support groups. We have an online forum as well that you can you can log into and you can talk to others in a similar situation. Yeah, my third set is for your own Africa. So I think it's really important that you know, when you go to the GP or you're talking to your gynaecologist, it's about your symptoms that you are your own advocate and you are pushing for the care that you want and you are pushing for the treatment options that you want to have a swell. My next step is to try different things and see what works for you. One of the frustrating things about endometriosis is that it affects everybody differently and every single treatment option that is available. So either the treatment options, eh? So you're aware our surgery on pain management or hormone therapy and in each of these just come with different side effects and different impact on on different people as well. Eso when you're going on that journey of finding what treatment options work for you, except that you might have to try different things to find exactly what works. Thegame on DH Finally, you know, just as I said it first, just be kind to yourself and do things that might help you, and that you find enjoyment in whether that's yoga or, you know, having a long baths. And so one just just finding a routine, really, that makes makes you feel better about your condition

spk_3:   50:40
so that essentially to somewhat was over a daily routine that treats you kindly and make sure you have some head space and time for yourself. Get a good network of people and make sure that you're proactive about just seeking other people that have this condition so that you don't feel insular and isolated. Perhaps self educate yourself so that you've got a chance to actually really understand what is happening to your body in a more medical way from the links and so on that we can put on the show notes on Don't be afraid to ask for help on Don't be afraid to communicate with your friends that this is what's happening to you and why you feel this way and I think definitely utilise what's on the charity website. There's a wonderful array off fantastically useful places to look and find other people and connect on guy. I think with this condition, from how I've spoken at length to Kirsten and few other friends who have the same in varying degrees, it's really important to actually open up those those communication places on DH and start to talk about. As as Face said, You know, it is a long term condition with long term chronic pain. So people need to understand, perhaps that, you know, some days that you're not going to be so good as kissed in very beautifully demonstrates on our podcast. And, of course, endometriosis. UK is but one place off wonderful information that you can mine for all of the things that would interest you. In knowing more about the condition, I will put as much as I can on show notes and please do show. Thus, as I said earlier, anything you think that's worth sharing with people just as a quick lest there's endometriosis dot Aug There's WW dot our seo gi dot or dot UK, which is Thie Royal College of Obstetricians and Gynaecologists.

spk_2:   52:34
Are there so many? I mean, you can

spk_3:   52:35
have a little searching your search engine of choice and see what you can find. It's out there. That information you need is there from trusted sources

spk_2:   52:45
as well as people's

spk_3:   52:46
opinions on DH experiences, too. And we'll try and share some of those as well. Thank you so much. Faith. I think you work on the website, and the charity is is really fantastic for women everywhere and on not just the women, I think you know. It does help people as families connect and also, you know, partners and so on off people suffering. This should also take good luck and have a little delve so that they can find them, too. You know what their partners are going through? Would you agree?

spk_0:   53:14
Yeah, no, definitely. And no support networks are so important. So do you sign post any friends or family or even your colleagues to our website so they can learn more as well? And we can all help remove their unnecessary taboos associated with with the condition and make sure people are getting the help that they need.

spk_3:   53:30
Superball, thank you so much. For if you're amazing advice today as well, you've been wonderful to have a good day.

spk_0:   53:35
Yeah. Thank you, Sara. Thanks for having May

spk_1:   53:37
way. Have it be kind to you, please. Thanks again. To the wonderful Laura Parker is Gabby Lucy. Shirley is Rachel the only thrill for executive producer ship moral support on? Please give an audible applause wherever you are forecasting Stansfield as fair and herself to Diane Alexander. He didn't appear in this episode, but we'll be on the next one. She's amazing. And in the spirit of trying to promote community as detailed in the interview, I spoke to

spk_2:   54:15
my casts on They're up for it. So we're going

spk_3:   54:19
to have a zoom meeting am A, Which means asked me anything with Kirsten on the cast on Sunday, the 10th of May in your home and mine and with the cast. Of course, if you would like to join us, fill in the form linked on the show notes to do just that Onda link will be sent to you on the day on DH

spk_2:   54:37
were gonna ask. That affects you do come if you can possibly

spk_3:   54:41
donate £3 to an endometriosis Charity Vier, quirky voices Cofie I promise it will get there. That would be wonderful. And we can all help to fuel research into this life Changing condition called me so any remains to say thank you so much for listening. And what Please do. Share this with your pal so we can be as useful as possible. I sincerely hope you're well on looking after yourselves. Still quite crazy out there, huh? But you are still a beauty inside and out. Yes. You are going to say it, huh? Still, Bette, stop it with the negative. You're amazing. Um, if you're if you're bits So let's try a bit of oh, making room together. You really? Oh, my aching womb. It really does help. We have to be in the penguin position Head on the floor leading down Holmes relaxed. Just be kind to you. Alright. Blooming are lovely and I hate this podcasters resonated with you and that's as a result. You've reached out to some good pals this week. Maybe even shared some of your storey If no When you want to. Why not call someone after this podcast? Just say hi and have a hearty, warm laugh with someone you love and no well, and probably showing your bra, too. At some

spk_2:   56:05
point, make a tic tac share a couple down the phone line, but please

spk_1:   56:10
don't suffer in silence. There are folks who can help that our treatments to make the days more bearable. Andi. So do consider trying some of the things that are recommended from this foot cussed do some more useful reading, and there are a lot of good, joyous times ahead to be had on their folks. PM PM May Now keep keep using that positive visualisation might be. Soldiers come and help you to envisage a better time. It might be pink, fluffy unicorns. It might be very sexy, teeny, tiny, buff men. Women who have help you cope better with the pain in your mind's eye. But whatever helps have Huguely Day from me on the cast on Have a good week. We've won more. Frayer on DH. I certainly look forward to sharing that with you as well as Kirsten's wise words on what's happened with her on a final cheque in with they of endometriosis UK Looking at how you can recognise that you might need from hearty thanks to the hugely talented Matt and Zack Lemon, who have created this groovy music. Love it Show Thanks. Thanks for dinner and a shout out to kiss you. Really, Nicky, who does our beautiful anyone for coffee artwork, output links to her stuff. If you need an artist for your cost or, to be honest, anything, she's amazing. Then get in contact. Cassie. She's Please do cheque out the show notes. Thanks to Fail Kirsten and everyone involved today and have a browse of those endometriosis. UK wears their amazing out. They have a group of three clicks Goodbye.