Transcript: Open Up the Conversation - Motherhood and Menstrual Health Conditions

Note: This transcript was created using Google Meet’s integrated transcript tool. Whilst every effort has been made to rectify any mistakes, some errors might still occur.

Lauren (Freja’s Volunteer) : Okay. Well, hi everyone and welcome to Frejas’ third instalment of our Open Up the Conversation series. Before we start, I want to do a quick introduction of Freja’s for anyone that's listening who might not yet have heard of Freja’s. Freja’s is on a mission to change the way society talks, thinks, and feels about reproductive health conditions. We believe that a key step in creating real and meaningful change is building a better understanding of how conditions like fibroids, endometriosis, adenomyosis, polycystic ovarian syndrome among many other reproductive health conditions really affect a person's day-to-day life. Therefore, Freja’s has been collecting and sharing written stories from across the UK and now we are inviting some amazing guests to help us open up the conversation further. So, in this series of chats, we want to take a deep dive into some topics we know can be difficult to open up about when it comes to reproductive health conditions so that we can all learn from and inspire each other. So, the topic that we're going to discuss today is motherhood. We're going to discuss how all aspects of motherhood are impacted by reproductive health conditions.
 
 

00:01:13

 
Lauren (Freja’s Volunteer): But before I hand over to our four amazing guests to introduce themselves, I also wanted to quickly mention that nothing discussed here is intended as medical information. This is purely the participants sharing their own real experience. So if you are listening and are at all worried about your reproductive health, you should consult your GP immediately. I'm now going to ask everyone to introduce themselves and I'll just go with the order that I can see on the screen. Sally, could I start with you, please?

Sally: Hello. So, my name is Sally. I'm 31 from Dunfermline. My son is 13 now. I almost forgot there, 13 now and I've been dealing with very painful periods since god, I was about 18 and we still haven't come to a diagnosis yet. And I've had laparoscopies, we've tried countless different contraceptives to help it and now we're back to the point where I'm on absolutely nothing to see if that's going to help. It's not so far. ,so yeah, we're just in a bit of limbo just now with it all.
 
 

00:02:23

 
Lauren (Freja’s Volunteer): Thank you. I'll go to Alice next.
Alice: Hi, I'm Alice. I have got endometriosis The pain began when my periods did when, I was 10, so quite young and I didn't get my diagnosis until I was 27. I spent the majority of that time not actually knowing what endometriosis was and I have three children. They're five, four, and one. Thank you.
Lauren (Freja’s Volunteer): Thank you. I'll go to Anastasia next.
Anastasia P: Hi, I'm Anastasia. I live in Liverpool. I've got PCOS. I suspected a hormonal imbalance of sorts from my late teens. and I got my diagnosis probably about five years ago. and I've got two children. They're six and eight.
Lauren (Freja’s Volunteer): Perfect. And Efia please.
Efia: Hi everyone, my name is Efia. I'm a mother. also founder of Mummy Endo & Me, which is an online platform for mothers who suffer from endometriosis or adenomyosis. Having said that, I've suffered from endometriosis and adenomyosis and cysts. I have a little one, of course, we're all here because we're mums. And I was formally diagnosed about 10 years ago, but I had the symptoms for years and didn't even know it could be a condition because I thought it was normal. yeah, glad to be here.

Lauren: Thank you. So, I'm going to start with my first question and I think I'll direct this to Alice if you could kick us off, but I wanted to talk about your journey to motherhood. What were your kind of thoughts about becoming a mother prior to your diagnosis? And did your diagnosis change any of those thoughts? Or did it change any decisions that you made?

Alice: Yeah definitely. Before I kind of go into the answer, I want to say to anyone listening, something that I really am challenged by, and maybe other people in this virtual room are as well, is discussing the duality of being really really grateful to be a mum, but also being at times angry, but sometimes saddened and frustrated by having to go through such a journey with our conditions and for some of us through fertility.
 
 

00:05:08

 
Alice: So I hope anyone listening understands the sensitivity because we understand it and we try our best. I'm going to try my best to give you both sides. I must say I've spent most of the time the last kind of six or so years trying to shine a positive light on it ,and at times I think that's been to my own and maybe even other people's detriment that I haven't really shared my fully honest experience because ultimately my life's great. My children are amazing. But, I think it's equally as important to share the challenges because that's what makes people listen. I don't want a 10-year-old to go through what I went through when I was 10 so just to kind of caveat that as I talk about that. So to start off with your first point about I suppose what did I think about motherhood before I even had endometriosis, so I had it but I didn't know.
 
 

00:06:14

 
Alice: And motherhood for me had always been literally the purpose of life and it sounds very drastic but excuse me I'm just getting over a cold, it's probably why I'm a coach now, but I spent many of my years struggling with like the purpose of life. The only truth I knew to be was that I would be a mum. That was the only the only truth I could give. Even in school with careers, advisers, going to uni, I'd always struggled with what I was going to be. My only truth was motherhood. So, as I went through the journey of pain, and that is simply put, it's a pain journey. Loads of tests. You've heard these stories. If you've got endometriosis or you're trying to get a diagnosis, you've heard this story. You go back and forth to the doctors, you get rejected, another test, get rejected, blah blah blah. Eventually, thankfully, I did get surgery. And I suppose an natural optimist, I'd never considered, well, they must have been in the back of my mind that this was going to default my journey of ultimately I'll be a mum.
 
 

00:07:24

 
Alice: But at 27 being told and I really was told that bluntly, if you want to have children, it has to be now. It was overwhelming that my fertility had been put into question for me. It gave me a huge shock to put it lightly. And that alongside my kind of pain journey I think Sally you just mentioned that you you're you've come off all of medication or anything. I similarly had come off like all contraception everything to really listen to my body. I was taking two routes. I was taking a physical route to find out what the pain was. But I was also taking quite a holistic and spiritual route to try and figure out where the pain was coming from. So to be on that journey and then find out, oh actually your journey may be different, you may not be able to have children was a was a shock. And it really I mean it opened up that path for me to do more self-discovery and ultimately that was beautiful and incredible for me.
 
 

00:08:27

 
Alice: but it was huge. Yeah. To be there with my then boyfriend now husband being told okay you should try and have children and still the optimist I was like yeah I'm just going to get pregnant straight away. I can feel it. And I didn't. So, I had my first surgery, laparoscopy, and they said, you've got stage four. I don't know if they do stages anymore. Stage four endometriosis. There was too much for us to begin removing. We need to get you back into surgery, but in the meantime, if you're in the position to, you should try and have children. Bearing in mind this point, my then boyfriend and I were living and traveling in New Zealand and we kind of hadn't expected to come home with a plan or a child. But luckily we were in the position where we both agreed. I think it slightly helped that a professional said to my husband, "You need to have kids now."
 
 

00:09:26

 
Alice: And he went, "Okay, that's one decision I don't have to think about." But it didn't happen for us straight away. Months went on and as many people have been through the journey, the negative pregnancy tests went on ,and then I had another surgery, a super big one, and about four months later was blessed with getting pregnant. And as I said at the start, five years on, I've now got three children, which is incredible and amazing. And as I said at the start, that duality is something I struggle with. I'm so grateful, but I'm also so saddened that some people will have my journey and have my story, but their diagnosis will be five years later and it will impact their fertility more ,so yeah, hopefully that answers your question.
Lauren (Freja’s Volunteer): It does. Thank you. Does anyone else want to add how their condition kind of affected their maybe not even just their timelines, but their pregnancy, their mindset towards getting pregnant? Anyone else want to add anything?
Efia: Yeah. I definitely echo the thoughts on, you know, the duality that Alice mentioned there.
 
 

00:10:31

 
Efia: Mine was slightly different. my formal diagnosis came at a time when I wasn't even dating anyone and you're like, "Have a kid right now. You should have had kids yesterday if you really want to have kids." And I thought, "Well, great." but by God's grace, I got married a year later and got pregnant quicker than I thought because I allowed the doctor to get into my head because I thought, well. I was quite upfront with my husband. I was like, this might be an uphill battle. So, look, I'm not holding my breath. And luckily, I got pregnant. And I say that conscious of the fact that very often for people with endometriosis and adenomyosis, you struggle to get pregnant. And I sometimes feel a bit like a fraud. I don't know if that makes sense because I am so conscious of others who struggle with this. did I do anything differently?
 
 

00:11:30

 
Efia: No. I just feel it was grace and it happened. Having said that though, I think going into motherhood and having one child, I always dreamed, okay, she would have a sibling and secondary infertility really has been, of course, I've got underlying conditions which make it difficult, but it's it sort of shapes what your reality becomes. Unlike you, Alice, in when I was younger growing up, I never really looked ahead into I'm going to become a mother and I'm going to have x number of kids or whatever. I was never that way minded. I was always career-minded. But when it did come, I thought, well, actually, I wouldn't mind having a few, you know, and it's there's nothing like craving more of what you've been told would be difficult for you to have. So, I think knowing that it made me yearn for more. Over time I've come to accept it as it is. I have one child so far. If by some miracle I'm blessed with another one, I'll welcome it with open arms.
 
 

00:12:32

 
Efia: But it's a shame that this condition you're then forced to tweak your reality to just what your body can handle, I suppose. but yeah, I think definitely that it does shape how your journey as a mother becomes and I guess more of that or my experience would unfold later.
Lauren (Freja’s Volunteer): Thank you. Sally, did you want to add anything else to that?
Sally: Yeah. So I don't personally want any more kids, but I know a few of my friends and sort of close relatives that are going through IVF and do have endometriosis as well. And I think the thing they struggle with most is that people around them getting pregnant and trying to be happy for them, but at the same time feeling so heartbroken that they're not in that position yet. And it's difficult to comfort them because you're like what do you even say to that? Like there's, I don't know if anyone knows what to say to that in this room, but yeah, I can really feel for them because it must just be heartbreaking to be in that that position and not really know if there's anything you can do about it.
 
 

00:13:57

Anastasia: It's two things actually. Sally, going back to what you said, what you can say to someone that has those feelings of I want to be happy, but also, God, what about me? Why is it happening to everyone else? I always have said those feelings are allowed and valid. They're not malicious. They're a reality. There's it's something it's something that you want and it's okay to sit with them and feel them and play them out instead of punishing them. There's no moral compass inherent in craving something that seems to come easy to other people. And that's not just about fertility and children, that's anything in life. I had a similar experience I have a similar feeling to Efia that I feel a bit of a fraud because the main thing that you hear about with PCOS is fertility. That's the main thing that people discuss and try to mitigate and I didn't really have those issues. I tried to get a diagnosis prior to reaching that point in my life where children were an option or an idea and I was told well yeah probably but come back when you're trying to have kids and you're a year or two in so I just anticipated probably fertility issues.
 
 

00:15:27

 
Anastasia: And I fell pregnant. I hate to say that because I don't, but without trying really, which shocked me. And then due to this lack of diagnosis, it was hard to advocate for myself when it came to things like getting tested for gestational diabetes. So it kind of affected like the follow on care that is associated and I had to argue every step of the way saying I don't have a diagnosis but I do have a strong inkling and an idea that that's the case. So that's how I was affected but not fertility wise and I feel the opposite of the people you were discussing Sally. I feel bad saying that it doesn't seem fair. ,that's the other flip side of the coin.
Lauren (Freja’s Volunteer): Thanks, Anastasia. I wanted, so I've got a question for Sally. Maybe you can start us off. But thinking about now that you are a mother, what kind of impact does your condition or conditions have on you as a mother, for example?
 
 

00:16:40

 
Lauren: So like physical, any physical impacts or mental aspects you want to talk about?
Sally: I think now that Jack's older, it's a wee bit easier because he is more independent. He is out with his friends a lot. But when he was younger, trying to keep him occupied while being doubled over in pain, being sick, passing out on the toilet, it was just horrendous to deal with. And I felt awful for him because it was like, I'm not giving them the best version of me that I can give them, but there's nothing I can do to stop that from happening. I think as well, sorry I've lost my train of thought there. yeah, it was just I think for him seeing me in that pain as well, he used to get so worried about me. And again, now that he's older, I'm able to explain it a bit more. He knows kind of what's happening. But being younger, he just he would just be worried and he would be upset because he would see me crying and just doubled over.
 
 

00:17:44

 
Sally: Sorry, can you repeat the last part of that question, Lauren?
Lauren: Yeah. No, I was thinking about kind of what the physical impacts or the mental impacts it had on you when it comes to your condition of motherhood.
Sally: All right. Yeah. So, mentally, God, even just outside of motherhood, the hormone changes, the mood swings, the rage out of absolutely nowhere was just God, I was awful to be around. I probably still am quite awful to be around when it happens. But it's the guilt you feel if you accidentally take out on them or if you're short on them, if you're just a bit irritable and they're not really doing anything wrong, but everything around you is just raging because of your hormones. yeah, it's just God, I even feel bad thinking about like if I would shout now. ,but again, as he's older, he is beginning to understand it a bit more. But yeah, it's just God, I really I feel like crying because I'm like, God, I just at the time I didn't know what I was going through and he didn't know what I was going through.
 
 

00:18:57

 
Sally: I just knew that I was in a lot of pain. I was so grumpy. I was so angry and I was just fed up of feeling like absolute crap sort of three out of four weeks of the month. So yeah, I still I still probably am a bit fed up with it just now not getting to an answer, but like he's a supportive guy, so it's a bit easier to deal with now that I've got him. But yeah, when he was younger, it was it was really hard.
Lauren: And I know Alice, you've got very little ones just now. So, thinking about your your conditions, how does it affect you?
Alice Crozier: Yeah. A couple of things kind of came to mind then when you were talking Sally and I real feel for you when you're describing those deep emotions and I understand that. One is that I feel, and I I think women that haven't got endometriosis or other conditions feel this too that we were robbed of the chance to really learn our bodies by being put on contraception so young.
 
 

00:20:13

 
Alice: because not being on contraception and learning the cycle of my body along with the cycle of nature, I know that sounds so hippie- dippy to people, but it means a lot to me. It has been like extremely eye opening and as much as is possible, I try to like honour that the cycle. So if it's I'm coming to my period, I know I'm going to be in pain. And I know I'm potentially on the buildup going to feel that anger and rage you talked about trying to curate my life in a way. So there's space for that. Now that sounds all perfect sing song. I have three kids under five. The reality of that is very different because I can't go oh hey small children that run around my house. I'm just going to go off and meditate while you ruin my kitchen. So, ,the actual experience of that is really hard, but that's one part that I I do like I'm deepening my understanding of, but it but it's hard.
 
 

00:21:21

 
Alice: I can't really explain it any other way than it's hard. The other aspect is I'm self-employed. I think self-employment is when you have a chronic illness that literally takes you from society. Being self-employed is easier to manage, but it's not easy to manage. I've run my whole life 110% for three weeks of a month so that I could do 0% for one week a month. And I did that as a teenager. ,because I would literally have four days off school every month. ,but when I got back into it, I would be 110%. I haven't lost that part of me, but I'm trying to curate it in line with my cycle. So, in ovulation week, like accepting that I love working long hours. I'm a natural night owl. That really suits me. But when it comes to my period, I genuinely am like, okay, if you get four hours of work out of me during a day, that's delightful. ,and I don't think this is helpful, but I'm just trying to be completely honest.
 
 

00:22:28

 
Alice: When I'm really in pain, before I had children, I would take strong painkillers like codeine and co-codamol and just sleep or try to. I don't I can't do that with the kids. You literally have to power through. And I would love this answer to be like, oh yeah, I've got this great herbal treatment I take and I can do it. I just have to power through. I can't nap. I can't, My husband is at work all day, too, like I can't be like someone take my children. You power through until 7:00 p.m. and then you just like collapse and you watch your work and your house and all of the things you've worked hard for the rest of the month kind of come apart a bit. Yeah. Sorry, not some helpful advice, but just an honest experience.
Lauren (Freja’s Volunteer): Efia yeah, I saw a lot of nodding there. Is there anything else you want to add on that?
Efia Bemah: Goodness. It's, don't take this the wrong way, ladies,
 
 

00:23:34

 
Efia: It's almost a relief but sad that you're all stating what my experiences and it makes me really sad that that's what women are going through. That's our reality in motherhood. When you asked the question, I was thinking my idea of being a mother was shaped by what I saw growing up. My mum was the superwoman who I didn't know till she knew about my condition that she struggled with something similar. I would never have known until she opened up. And there wasn't a lot that I don't know, but from my background, from my culture, there wasn't a lot that she opened up to me about as a child. I'm only finding out some of them recently. So for me, my idea of motherhood was to portray this image of a woman who does it all. You know, not showing my daughter my condition or my weaknesses and powering through it. But it's not been like that. I've had to just be open about what's going on to the extent that it makes sense to her because she's quite young.
 
 

00:24:41

 
Efia: So in that sense it shaped who I am as a mother. To her it's not the way I would have liked. It's not the way I would have planned it. I would have liked to create this facade of a strong independent woman who does everything but that's not what we're having in this house because like everyone else has already said 3 weeks of the month or sometimes even two weeks of the month be depending on how ovulation chooses to come you know it's a battle it's a struggle the hormone changes my gosh I think they know me better than and I've got quite an understanding squad here, as I call them, my husband and my daughter. It's difficult and it's sad that it's not just me. I think hearing the similar experiences from Sally and Alice is just it makes me sad that there isn't an there wouldn't be an end to it unless there's some significant changes. From what I hear and see now, I don't know.
 
 

00:25:49

 
Efia: I don't see how the experience of a younger girl growing up now would be as a mother if she was to have that condition. And for me, that's the nodding and sadness because I'm thinking, well, where this it's not sustainable for at least the female species. It's not
Lauren (Freja’s Volunteer): Thank you. And Anastasia, I know that your children are a little bit older now and but going back to that kind of postnatal part of your life when your children were a lot younger, looking back now and knowing what you know now about your condition, how do you think that your condition impacted that period of your life? And if you were to go back looking in hindsight, is there anything that you would do differently? You're off mute now.
Anastasia: Okay.
Lauren (Freja’s Volunteer): Yes.
Anastasia P: Okay. ,PCOS is a funny one because it's a cluster of symptoms. The only thing you're really not aware of are the cysts and ovaries in question that are within the name. Everything else seems to appear.
 
 

00:27:12

 
Anastasia: and not get joined up unless you get this diagnosis. So insulin resistance, hypoglycemia, and mental health, uh fatigue. These are all seemingly disparate symptoms that kind of you learn to live with, and you often mitigate with whatever strategies you've come up with as a teenager or by the like sheer energy of youth, and then when I had my first kid and I was pregnant with my second, then I had gestational diabetes, which I didn't know about until quite far along. It really became apparent that I was just very tired, like very very tired and very very low and in a lot of systemic pain that was arising out of inflammation and fatigue. And I just assumed that that's what it felt like for everyone else. And I also had always been prone to like being a bit sad and kind of what I would have called like a melancholic nature, and I didn't think like, oh, you know, being fairly unhappy is probably something you should be discussing at the doctors.
 
 

00:28:40

 
Anastasia: I did eventually discuss it, and I was told to call the same doctor back two weeks later. And then when I called her, she wasn't around, she was on leave. And I was probably a bit too depressed to make more phone calls. So that sort of slipped out. And that was like 11 months in. I needed to nap probably as often as my kids. And that wasn't just sleep and uh sleep deprivation. It was like massive, in retrospect, I realize now, massive hypoglycemic episodes that were making me feel sick and tired. And all of that probably could have been mitigated a little bit with some closer monitoring, with some support specific to that condition. And it took me several years to like, my partner said, you know, you're pretty unhappy. I think you should go to the doctor and discuss it. And I did and I got some help and I got a diagnosis and I started treating all those symptoms individually and it really helped my experience of maintaining enough energy to plough through those early years.
 
 

00:30:01

 
Lauren (Freja’s Volunteer): Is there anything that you would have done differently or you wish had happened differently?
Anastasia: I probably would have prioritised mental health and seeking help and I did eventually get anti-depressants which I would have definitely taken earlier. I probably wouldn't have beat myself up so hard for not being able to breastfeed my first child and making that first year of motherhood all about that, and I would tell anyone with conditions that are associated with depression to seek early help and not just assume that their lot in life is to be unhappy. That's it.
Lauren (Freja’s Volunteer): Thank you. Does anyone else want to, I know that this is a period that's maybe a little bit far away for some of you, but going back to that postnatal experience. Is there anything you can think of now that you look back and think, "Oh, that was probably because of, you know, whatever condition that you have that you maybe didn't realize at the time.
Sally: I was diagnosed with postnatal depression, but I think at the time as well, it was probably a mixture of everything, although I've not got a an official diagnosis yet.
 
 

00:31:32

 
Sally: I think it definitely didn't help how bad I felt and how much pain I was in and just how low I felt. Like, I felt so bad that I should be enjoying this. It's a brand new baby. like and here's me sad, can't connect with anyone, can't connect with the baby. And who knows, it might have been sort of a mixture of postnatal depression and whatever I've got going on still. Who knows?
Lauren (Freja’s Volunteer): Thank you. So, I think this is something that we have kind of touched on already, but we're all here obviously, we're all mothers, but thinking about your child or children, well, Efia, I'll start with you. What is the impact do you think that your conditions have on your child? And how do you address your condition with your child? Or for anyone else, how do you plan to address it in the future?
Efia: Okay. Oh gosh, it's a learning. I'm still learning through this. So, if anyone thinks I can do it better, by all means, please DM me after this.
 
 

00:32:49

 
Efia: But, I have a daughter and I think that makes a huge difference for me, the fact that she's a girl. If it was a boy, maybe I'd have handled it slightly differently, but and I have an inquisitive daughter at that. She's very smart for her age. she's under eight and I think the earliest I felt I had to start addressing it was when she was about four when you know they're a bit more aware they can ask questions maybe you know not as fluent but they can understand what's happening and most months I'll end up in A&E and I'll be picked up by paramedics from the house because my husband can't drop me because she'll be at home alone and you know it just didn't work. So over time, her watching them come and take me, some of the things she would say when I'm going or leave, getting through the door, I just thought, okay, we need to have a chat about this because for me it was I was worried about what she's thinking mentally.
 
 

00:33:52

 
Efia: And rather than leave her to wonder, I'd rather speak openly about it within reason, of course, to the age that she could understand then. And what we've done is gradually I've had to explain mummy's tummy hurts and she has to go to the doctors and it'll make her feel better and she'll come back. I know that's only so long that excuse would work for, but I feel it's made her more mature for her age than I would otherwise like. If we go to the shops and I sit down, mummy, are you okay? Should I rub your back? She’s a kid, that she shouldn't be asking me if I'm okay. And to some extent, sometimes it makes me feel inadequate as a mum, but I feel, and I don't know other kids whose mums have this condition, but I feel particularly for my daughter, it's made her more mature than I would like. But on the flip side, I hope that the, well yeah the education I'm giving her in this experience because I'm choosing to share parts of it with her as and when it will make sense to her would serve as a guide for herself when she reaches puberty but also as a guide for her to help her friends if someone should come and say I'm really struggling with period pain.
 
 

00:35:20

 
Efia: you know, she said, "Actually, I know about XY Z." She can say “endometriosis”, some of my friends can't even say the word, but she's gotten to the stage where she can say it. I should have mentioned in the introduction, Mummy Endo & Me is inspired by her. It's a book I'm writing about her experience as a child, watching her mum go through that because I would like to think there are other kids like that. And I would like them to know that they're not alone in it. I think particularly in the younger years, it's tricky to help them make sense of it. Sally, you mentioned that your son is 13 and it's much different now, but it's helping them mentally navigate that until they're at the age where they can make sense of it because children observe and see a lot. And if you don't explain, they're left to worry. And I didn't want that for her. I wanted her to know it's something we know about.
 
 

00:36:18

 
Efia: It's being dealt with. I don't want you to think is mummy going to come back when she goes to the hospital. It's not okay for a kid to go through that. And sometimes I wonder if in this lack of research or lack of funding if you like if we're thinking that far ahead that it's not just impacting me as a woman, it's impacting my child psychologically and I'm having to do the explaining myself. And you know we need, I mean technology is advancing and there are ways and means to have children but so far this has to be carried within the female body and that female body needs to we need that as much research as we can because it's the only way that we can continue our species and I know I can go on one with this but it really has far-reaching impacts for mothers because there are children that you need to take care of. Alice, you've mentioned having three kids and it doesn't, endometriosis doesn't take a day off.
 
 

00:37:19

 
Efia: It doesn't say well, and sadly some of us were sold lies about, oh, just have kids and you'll be fine. No, it still persists. And this time it's not just you in a room with a duvet over you. You have kids who have needs which doesn't go on holiday during that week when you're unwell, so I know for me it's had an impact on my daughter and as in when she started saying certain things I felt I had to come be open and that's where I mentioned that I'm not the kind of mother who sort of shields everything and pretends I'm okay but I've had to have very honest conversations with her. Mummy's tummy hurts and as in when she reaches the age and she understands or can understand puberty I'll reveal more but it will be an education for her which is a relief and hopefully I've suffered enough for the two of us and she wouldn't have this
Lauren (Freja’s Volunteer): It really it really is such a fantastic thing that you're doing, you know, you're doing this very stepwise thinking kind of what's age appropriate and it's so much that's a whole job in itself.
 
 

00:38:28

 
Lauren (Freja’s Volunteer): but Alice, I wondered if you had anything that you wanted to add on that as well.
Alice: I'm learning a lot. So, thank you so much for sharing all that. My idealistic view is that I've got two daughters and a son. And I hope they're all I can teach them all. I really want them to live and breathe cyclical living. I want them to know the feminine cycle as we used to live. I want them to know that the way we live and work right now in society is not made it's not made for women. So, I would love her to curate a life where she can live and breathe that. And I like anyone else, we can't see the future. And the advances in technology are make the future even more blurry. But what I hope is that it makes space for more freedom in in choosing the way we live and we don't have to live the kind of 9 to5 Henry Ford rat race that hasn't been created for women.
 
 

00:39:34

 
Alice: So as I have done with almost every answer, that's my idealistic way. I'm extremely open with my children. They know like you know they'll be in the toilet with me when I'm on my period and ask questions and if they ask questions about sex I just use the words they're really young but I just want to just be open about everything. But I have a barrier which only really therapy can unblock is that I really struggle not to show up as strong. So I can I can talk the talk and I can say I want to honour rest. I want to honour cyclical living. But I am a product of the patriarchy and I am still that. And I really struggle with not, I really struggle with like not working hard and not pushing through because I watched my parents like work really, really hard in life, face adversity and carry on doing it. And I struggle to that's I'm like working through that myself to break that.
 
 

00:40:41

 
Alice: I find resting difficult. I have to rest. So sometimes I'm like, did the universe give me endometriosis so that I'd rest? I don't know. But I really struggle with it. And I even struggle hearing, I struggle telling people that I've got endometriosis still in a work setting, or probably none of my clients know unless they've been stalking me on social media, so yeah, I have an idealistic way. I want this to pan out. In reality, I've got a lot of blockers to work through.
Lauren (Freja’s Volunteer): Okay, Anastasia, is there anything you want to add on that topic?
Anastasia: I haven't discussed period matters with my kids. I have two boys. I've mentioned it in passing when it's come up. I have really struggled with probably PMD rather than PMS at this point since having my second child. It dawned on me halfway through 2020 that this is not garden variety hormonal disruption.
 
 

00:42:02

 
Anastasia: just for the purposes of anyone watching PMDs menstrual dysphoria rather than tension or stress which sounds a little bit like oh you're a bit stressed. No I simply, I was incredibly, incredibly low and incredibly angry. And I remember my husband looking me in the face once and saying, "I've seen you go through a fantastic range of emotions within 25 minutes." and it's kind of beautiful, but it's also really scary, which speaks very well to him, but I in an effort to kind of rebuild my physical self over the last year or two, which really is has been a priority in and that effort has not been just for selfish reasons. I don't know why I should mitigate that and say that, but it's also to be a more present parent. I have ironically been less present parent because I have prioritized my mental health and physical health more than I used to. And that has come with such guilt and has come with so much leaning on my partner and to the point now and I feel ashamed to be ashamed to say that but the kids are more likely to cry out dad than mum when they need something and that has made me feel terrible.
 
 

00:43:42

 
Anastasia: because I've you know I've not always been physically available. I've not always been up to the task. So it's really affected my ability to be a present parent and they probably experienced less of me in many different ways. I have tried to explain what terrible PMS is and what like really difficult periods are to them in the sense of like my body is really full right now. Like there's so much noise in my body that when you add more to it, I'm already like tipping point and the bucket's gone and they do kind of understand that. But is it fair to be saying that to them two weeks out of four? They know it's there. They are I don't know if they're truly sensitized to it, but they're aware of it and they try to try to give me some space. But yeah, I'm fortunate enough to have someone to lean on, but even that comes with guilt.
Lauren (Freja’s Volunteer): I think the thing is especially like there's no right or wrong way to do this.
 
 

00:44:50

 
Lauren (Freja’s Volunteer): There's no right or wrong way to be a mother. But what I sense from kind of everyone is how open you try to be. And I feel like that is very much a generational thing. Like I feel like this generation of mothers are more open about these types of things and the fact that we're even talking to boys for example. And that's just as important as talking to girls for the next generation. I have one last question for everyone. And I was wondering that if each person could think about a piece of advice for a fellow mother or future mothers who have reproductive health conditions, what would you say to them? So, whoever would like to go first, please take it away.
Sally: I would say just don't give up. I mean, I know I'm what, 13 years into trying to get a diagnosis of some sort, but I'm going to keep going back and I'm not going to let it well, I say that, I do let it get me down every month pretty much.
 
 

00:45:58

 
Sally: But I'm not going to, I'm going to try and not let it cloud my judgment of how good a mum I am or how present I can be or how my sort of mood swings and everything come off on Jack because obviously we're just trying and it's all you can do. So I think you've just got to keep going. Be open with your kids. Be open with everyone really. Like it's a completely, although having a reproductive condition isn't normal, periods are normal, we're all going to go through just crap with it. And I think just being open, be so so strong with it and just keep going until you get something that works for you. Hopefully sooner rather than later, but yeah, keep going.
Efia: I'm going to go in case someone else says this. Find what works for you and do it because I think I love social media, but I think it's so easy to hear, oh, when this person did this and it's working for them and try and work it for yourself.
 
 

00:47:15

 
Efia: And what I'm finding increasingly in this journey, whether it's my choice of consultants to the nitty-gritty details, is finding what works for me and my family. Anastasia, you mentioned the fact that your kids will cry to their dad rather than you. And for me, it's similar. I mean, there are times when she knows mummy's in too much pain. And it's sad that a child has to think that and not cry out to their mum and go to their dad instead. But that's what works for me and my family now, you know, and I'm learning to be okay with things like that. So finding what works for me. What works for me is that I know in those two or three weeks when I'm well, I'll do really fun things with her. And then in that one week, I'm off and we're getting into that rhythm. You know, she's getting she's understanding that. And if I was to look at what's happening around, I would feel terrible as a mum, as a person.
 
 

00:48:14

 
Efia: And I'm learning to be content in my own journey. And I think that is so important. Noticing where you are. It would be lovely to have a house full of kids. But I have one. I feel if we all really look, there are little blessings that we may be able to recognise in our circumstances. And that makes me feel better than beating myself up or being sad about what I can't have and that would be my advice. I feel like I've given more than one advice, but I will stop talking.
Anastasia: I'll go. Thank you for validating that feeling, Efia. That actually meant a lot. I would say that there is so much of the image of the super-mum even outside of your own family model like we even the media that decries the difficulty of being a mother often portrays a version of parenthood that is very enriching and very wholesome.
 
 

00:49:32

 
Anastasia: And I would say that you have in order to model being ,a happy fulfilled person. Ironically, sometimes you have to forgo all the like all the playdates and all the enriching activities and all the things that the endless array of stuff that you feel like you should be doing for your children that's presented to you as soon as you have them. And you will look around and there are mums who seem to do everything and every weekend stand out and it's it sounds amazing and I don't know how they do it. I certainly can't and I am a lot happier for accepting that and just being like well yeah but you know your mum's a tad healthier so when we can do the occasional like when we do the thing I'm not there like suffering and being unhappy and you know taking you back home thinking what were we doing like to have a cry as soon as we come back just prioritize your happiness and health like don't fall into the margin then of like this this is parenthood and I just have to grit my teeth and get through it and make their life perfect while I'm crying at the wings.
 
 

00:50:50

 
Anastasia: Take the break. Don't go to the play date. Don't sign them up for the cello if you can't be doing that afternoon. Like it's they'll be fine.
Alice: That's brilliant advice for me as well. My advice is around this might be very helpful for someone who's going through a diagnosis particularly is we get very fixated on the medical route of diagnosis and healing and it's not everything. And so when a doctor turns you away and you feel that deflated anger, I'm not being listened to, which is all completely valid, there is other ways to empower yourself on that journey. And so my advice is to consider all the aspects, your body, your mind, and your soul. And you can it doesn't have to be wildly hippy. You can just journal or do something simple to get your thoughts out, but it's your journey and no one has to control it or take that away from you. I think when Sally said like don't give up.
 
 

00:52:17

 
Alice: That's what I did. I was like I once I knew what endometriosis was. I equipped myself with everything I could and I put myself in front of the doctors. But going through the whole journey, I'm not sure I could have done that without also leaning on more meditative and spiritual techniques. There's more than just medicine. Medicine is actually not going to tell us the cause of this. It's something bigger. Or if it can, you know, a doctor would be like, "What the hell are you on about?" But I often say that when I'm in a GPs, I often say to them, I might not be in the right room today. I'm not sure whether I'm in the right room, whether I should be somewhere else. But, and the last thing on that is like really really listen to your body and your mind and your soul. And I mean like lie down silently and listen because honestly when I was about 22 or something I remember being on holiday with my parents.
 
 

00:53:20

 
Alice: I think I just graduated and I had had a really noisy noisy really noisy few years. I distracted myself a lot in those teenage and 20s. really drowned out any noise. And I lay there and I said to my mum, I'm like laying on this beach with my parents. I was like, there's a pain in my stomach that I've had forever. I've had this pain forever and I'm ignoring it and I really need to find out what this pain is. And I picked up like Lena Dunham's book and she in passing writes a paragraph about endometriosis and I was like, I have that. And it sounds like wildly obscure that story, but I honestly think my whole life I'd never lay down and listened to my body. And it's so important. And that whole process has taught me everything because then next journey you go on, you know, if and when you know, you are blessed with having children. Everything I'd learned in my endometriosis journey became my advocacy for my pregnancy journey and my birth to give birth naturally during COVID to do all this this thing that I couldn't have even expected. I was equipped because I'd gone through this journey. ,so that's very wishy-washy, but there we go. Thank you everyone else for sharing as well.