The Dr Louise Newson Podcast - 146 - Helping others feel less alone with POI with Ava Vanderstarren

Episode Date: April 5, 2022

Ava Vanderstarren is a performing artist, actor and public speaker. She is the co-author of Blossom Living With Premature Ovarian Insufficiency / Early Menopause Journal and is the co-founder of the charity Innocence Lost Foundation. She has over 10 years lived experience of POI & mental health maintenance. In this episode, Ava discusses her experiences of her POI diagnosis when she was 17 and how confused and isolated she felt at the time. Ava has co-authored a supportive journal for young people to help readers through diagnosis of POI or early menopause and to provide clear information and help them feel less alone. Ava’s 3 tips: Advocate for yourself, even though its frustrating and exhausting Remember self-care and your own health come first Don’t underestimate the impact of hormones on your physical and mental health For more about the Blossom Living with POI / EM Journal: https://amzn.to/3HZx4Cr   Connect with Ava on social media: Instagram & TikTok: @avavanderstarren Twitter: @AVAnderstarren YouTube & Facebook: Ava Vanderstarren Ava’s professional website: http://www.avavanderstarren.com/ Ava’s charity working with child soldiers in Sierra Leone https://innocencelostfoundation.com/  

Hello, I'm Dr Louise Newsome and welcome to my podcast. I'm a GP and menopause specialist and I run the Newsome Health Menopause and Wellbeing Centre here in Stratford-Bron-Avon. I'm also the founder of the Menopause charity and the menopause support app called Balance. On the podcast, I will be joined each week by an exciting guest to help provide evidence-based, information and advice about both the perimenopause and the menopause. So today I've got someone on the podcast who's the other side of the world, well, nearly the other side of the world, she's in Vancouver.

And so we've managed to coordinate diaries for her to come and talk today. So it's someone called Ava, who I've not met in real life, like a lot of my guests, but I've been seeing what she's doing through social media and very impressed with various things that she's done that we will talk about. but also she's young. And so it's always interesting when there's young people talking about the menopause because as many of you know when you Google the menopause, it often comes up with middle age or older women.

And Ava certainly isn't. So welcome Ava. Thanks for coming today. Thank you so much for having me, Dr. Louise Newsomson. Nice to meet you. Oh, and do you? So just tell everyone how old you are. Yes, so I'm currently 29.

29. Yeah. But I was diagnosed a lot earlier, which we can get into. Yeah. So how old were you when you were diagnosed that? So I was diagnosed with POI or premature ovarian insufficiency. Officially diagnosed when I was 17. But I started having symptoms earlier.

So when I was around 13, I started menstruation and I got my cycle. And I had it for about one year fairly regularly. And then it started to get a regular. So like when I was, you know, 14, 15, I was missing a lot of periods. And I would have long periods of time without getting my menstruation. And then we kept going to my family doctor, you know, is everything okay? Checking. I was always going with my mom at the time.

I was, you know, in high school, wanted to see, is everything all right? Is this normal? And yeah, the doctor would, you know, always dismiss us like, you know what, it's fine. This is normal. It will come back. Don't worry. And then it got to a point where I didn't have my parents. period for about a year. And so we went to him and we were like, you know, we want to see a specialist

and we kind of really pushed to see someone. And we got referred to a specialist and off of my first visit from the blood work, they diagnosed me. And they called a premature ovarian failure then when I was diagnosed. And yeah, so I was 17 at the time and I was in my last year of high school. So I remember that being a really difficult time. And what did you think when you were told? Did you know anything about menopause? Didn't know anything about it. And, you know, it was a lot of overwhelming information. Like, we were very confused.

And yeah, one of the things, of course, is the big thing was, oh, you won't be able to have children and all of that. So a lot of us focused on the infertility aspect. And we were, of course, devastated. You know, I remember my mom crying a lot. I was very emotional. Like, it was very shocking after hearing for so long that everything is fine. that this diagnosis was given to me. So yeah, and then I remember, you know, for years being

very confused about what was going on and also questioning the diagnosis, like, is this actually what I have and trying to go for other opinions and going to naturopathic doctors and just trying to see like, you know, is there something that will make her period come back? Yeah. And then I also remember feeling very isolated for a long time because I didn't know anyone else who was going through that. Social media was still very new. I did end up joining Facebook that year, I think, you know, and I eventually did find some Facebook groups, but for the first few years, I felt very alone. And also the information, there's so much information on the internet. I didn't know what applied to me and what didn't apply to me. Even when I went into the Facebook groups after I've had it

for a few years, the information was really overwhelming and I didn't even know where to begin. but I did go on to hormone replacement therapy and some medications at the time. And then it got to the point where my family doctor, when I started becoming sexually active, put me on birth control because he was like, well, if you need a birth control and you need hormones to go on birth control. So I was on birth control for such a long time until in about 2017, I had a blood clot scare. So then I ended up going off of birth control and going back on to hormone replacement therapy, which I've been on until now. So, yeah, that's kind of just a little bit about,

but it's, you know, how it is. It's like your life kind of changes, and then all of a sudden it's always at the forefront of your mind and you're going to all these doctors' appointments, getting all these blood tests, and that was a tough time for sure. And so do they know why it happened? No, I got a lot of testing, but it was still, they say idiopathic, so still not quite 100% sure why, yeah.

Which is actually the commonest reason. Actually, idiopathic just means we don't know. As doctors, we don't know, which sounds awful, doesn't it? But there's no obvious cause. So for some women, it could be that there was a genetic problem. So you probably had lots of tests for looking at your chromosomes and that sort of thing. Sometimes there can be certain infections. We're always taught at medical school.

Mumps can affect the ovaries. But actually, that's quite uncommon reason. And for most women, it is just one of those things. Sometimes it can run in families. I don't know if anyone run in your family. family had an early menopause at all. No, not that I'm aware of like specifically early menopause, but I also especially recently I've been looking a lot more into the autoimmune things about it too. Some of my autoimmune markers are flagged, but I don't have any like other diagnosis, if that makes

sense. So yeah, I've always kind of wondered like how that can be impacting it as well. Yeah. Yeah. So also immune just means that your body is building antibodies to yourself really. And so of quite common autoimmune diseases such as hypothyroidism or diabetes is thought to be an autoimmune disease, rheumatoid arthritis, even celiac disease as well. So often people who have an earlier menopause have certain tests to make sure that you don't have any of those with time as well. But it's really important. I mean, the good thing is, is that it was diagnosed actually fairly promptly because, as you know, lots of people are young and when their periods start, they can be all over the place and be irregular and change. So no one's really putting that on the top of

a diagnosis for an adolescent who's having some irregular periods. So the good thing is, I suppose, is that they did get onto it very quickly and that you could start some hormone treatment because some studies I've read have shown that actually the average length of time is about seven years before a diagnosis is made. I don't know what you've read about that. And often people are going back and forth, back and forth to different doctors trying to work out. And as you know, there are health risks by not having hormones when you're young because the hormones are so crucial. So it is important that people are picked up and diagnosed early. But it's very hard because a lot of people, as you know, don't have menopause training as health care professionals

and very few actually have training about POI. And as you say, it used to be premature. ovarian failure and that's a horrible word failure actually isn't it it is yeah I also was such an a student you know I also have always wondered how much stress has played into it and it's something I've been looking into for a long time as well but I'm really trying to keep my stress down and make a lot of lifestyle changes and stuff but yeah I know I was straight a's across the board and then I got diagnosed of premature ovarian failure it was yeah it's horrible it's absolutely horrible and you know when I was graduating it was always POF and I didn't really think much of it because I didn't really see young women with early menopause or I probably did but I missed them because I didn't know enough I hadn't had any formal menopause training really didn't know much about it and then when they changed to POI insufficiency rather than failure that's so much better yeah just that holds in because and actually the ovaries are often insufficient rather than complete

failed because it doesn't mean for every person that they are going to be infertile. They might have reduced fertility for sure because their ovaries aren't working the same way. But we know that when women take HRT, it almost relaxes the ovaries. And so there are some women that do become pregnant. So it's awful in so many ways to be a failure at something, as you know. But this POI diagnosis is better. But still it's a big thing because. Like you say, it's very hard to talk to people because it's not something that your peers are necessarily going through.

Certainly at such a young age. So were you experiencing symptoms at all over? I think that I was, but I wasn't really putting two and two together. So when I look at the list of symptoms, I've had all of them at one point or another. But yeah, like, you know, some hot flashes, night sweats, trouble sleeping, anxiety. Obviously the missed and irregular periods. And as time goes on, there's periods of time where even though I am on HRT, I will have more symptoms than others.

But, you know, like fatigue is one of the big ones and brain fog and sometimes body and joint aches and things like that, you know. So those are just the ones I can think of. There's so many more. And it's so hard sometimes to know how many symptoms are related to hormones and how many are related to other things as well. And certainly when someone's on HRT, often people think,

oh, they can't have symptoms because they're on HRT. But as you know, all our hormones work together. So if people are more stressed or doing more exercise, then they can need more. And the beauty of certainly the way I often prescribe HRT is that there's flexibility so people can increase or decrease depending on the need and requirements. and that often, it works quite well.

You know, I've been having migraines recently and they were worse. I was away with my daughter and had three-day migraine and felt awful. And then I was looking at my patches and they were all crinkled. And they obviously weren't sticking very well. I was like, oh, no. I wish I'd realise that. So, and I'm sure my absorption of estrogen for those three days was not as good. It was unreliable and low estrogen can trigger migraines.

And so it's always worth thinking about hormones. And obviously, lots of people laugh and think, that I blame hormones on everything, but 90% of it is related to hormones. Yeah. You know, our bodies don't produce the same hormones every single day. That's not how we work. We don't produce the same cortisol or the same adrenaline or the same thyroxin. And it's the same with estrogen and testosterone as well.

It will be slightly different according to everything else that's going on. And so then it's quite hard, isn't it, when you're given a fixed dose of HRT? For sure. And I'm really sorry that you went through that. But I also love to hear you say. that because that makes so much sense. Yeah. Yeah. And I mean, you know, we're learning all the time and it's difficult because although you said, you know, you have blood tests and obviously they did show that there was an abnormality, there's lots of people I see with POI who have normal blood tests. So they've had

blood tests before and they've been fine. But because our hormones can change all the time, if they were taken at a time when there weren't any symptoms, the chances are blood tests would be normal. And then at three in the morning when you're having a night sweat, of course your levels are going to be different. And so that's quite hard for people. That's actually something I've been struggling with too because unfortunately with our medical system, sometimes it takes me a long time to get in to see my specialist. So if I'm having symptoms right now and I book an appointment to see her, you know, I'll sometimes be seeing her like once a year or twice a year. But if there's something going on and I need to book an appointment quickly, it can be hard to get in. And I even

have trouble getting hormone tests from family doctor or other doctors who don't know about POI because they just say see your specialist. So it's very frustrating. Yeah. Yeah. It's very hard when you, you've got to sort of learn yourself and direct things. And I think it is easier with the internet, but then it also can be very bewildering as well, because there are so many forums out there as well. And you just don't know who's writing these things. Sometimes patients will say to me, oh, I've read this can happen and that can happen. And I have to remind them actually often people on forums are the ones that are having real problems. You don't write on a forum if you're feeling fit and well and you've got the right treatment.

So then you can get very skewed information. And then you don't know how much is evidence-based either. So that can be very hard. But it is a real scramble in the dark. And I know when I first set up my Instagram account probably about five years ago, one of the first messages that came through was a young lady actually was in our early 20s who had just been diagnosed with POI. She messaged and she said it's three in the morning. I'm completely alone.

I don't know what to do. I don't know how to get help. What would you recommend? And I thought, goodness me, this is a global problem. This is not a UK problem. And you just realise it's this isolation because you can't talk to other people is so difficult, isn't it? Yeah. Yeah. So, but you have been reaching out and you have been getting a community of people, haven't you? And I actually

was introduced to you through Anita, who I've done a podcast with before. And you've been working really hard on something very special, haven't you? So do you want to describe what it is? Sure. So in about 2020, I started to go more public with my story on social media, where before I had mostly just told close friends and family. But yeah, in 2020, I started to be more open and start to look into Instagram a bit more. And I connected with Anita from Blossom Living with POI. And her and I started chatting on Instagram and we quickly found out we had a lot in common. And we became friends. And we started chatting on WhatsApp and having video calls.

Then she told me about this project that she really wanted to do, which is a supportive journal for women and teens dealing with POI and early menopause. And she asked me if I wanted to be involved with her on it. So for about a year, we worked on creating this journal, writing the content and designing it. And you so graciously reviewed it for us and gave feedback. And yes, so it is a journal. It's called Blossom Living with Premature Ovarian Insufficiency slash Early Metapause. And it's a resource for women.

There's lots of prompt questions. There's place to record all of their information. So through their diagnosis, their doctor's appointments, symptoms, their medical. medications and test results. And then there's also a big portion of it on mental health. There's a mental health section. So it is really a supportive resource and something that we wish that we had when we were first being diagnosed. So that's kind of where it all came from. It was like something that we really wished that we would have had something like this to help guide us through the process and just make us feel like we're not so alone going through it. And it's nice to have prompt questions and

and to be like, oh, I didn't think of asking that to my doctor or, oh, this seems important. Maybe I should look into this. And yes, and just one place where you can keep all of your information about your diagnosis. And it is, it's really beautifully done for any of you haven't seen it. We'll put a link to the notes because it's done in a very sensitive way, but also a very insightful way. As you say, like when you first got your diagnosis, you're thinking about fertility. But actually, there are other important aspects that you should have thought about, you didn't know at the time. But some things aren't a priority, but you don't want to forget them

because they will be further down the line. So this is all there for you very easily. And I think the other thing is journaling is really important for lots of us, isn't it? I think it's a very cathartic way of being able to express your emotions. And there's quite a big section where you can freely write how you're feeling if you want to. And I think that's really important as well, isn't it? Thank you so much. Yes, you know, the mental health aspect of it is so important because I think we forget, yeah, how much hormones can affect that, how much the diagnosis can affect it, how you could be going through anxiety or depression or all different kinds of things, even just feeling so alone going through it. It's just, we wanted to have something so that women felt

like they weren't alone. And then it also includes some personal stories and a resource section as well with links where people can get medical information. So we wanted to include that as part of it as well. And have you heard any feedback about it? Yeah, we have. So some of the women who have purchased it, there are some people who we actually know who have told us that they've purchased it. So we've received feedback from them and they're very happy with it.

And they've told us how much they really loved it and just how much they've enjoyed starting to use it and how it's been helping them. So that's been really nice. Which is brilliant because it's not really. out for very long and it's one of those things that the more people know about and start using it. I think they will be able to recommend it and I'm sure it will just escalate. And it's done in a very sensitive way, but I also think for me as a physician, if someone came giving it to me, it's not too overloading because sometimes I see patients in my clinic and they come with a big

lever arch folder and I just think, oh my goodness, this is going to take me so long to go through. And obviously for them it's really, really important, but I don't need to know absolutely everything because then I don't have time to focus on the important things, whereas this is very easy, actually, to just flick through. And also for a lot of patients, it can be very bewildering seeing a doctor, very overwhelming, and you can't remember everything. So I've done it myself when I've gone to see a doctor and I come out and I think, oh, I wish I'd ask this or that or whatever. And then like you say, if you're only seeing that doctor once or twice a year, you've got to wait a long time. So then to have that prompt, it's just, you know, and also especially times of COVID,

it's harder to go with another person to a doctor. In the old days, we used to always say come with a friend or a family member, but there might be things that you don't want a family member or a friend to hear. So you've got this there ready for you. It's sort of your advocate as well, isn't it really? Thank you. Yes. And like for myself right now, I'm using the appointment section because I have a

appointment coming up in March. So writing down my questions and my main thing I want to ask so I don't forget. And then we'll record what happens during the appointment so I don't forget. So yeah, exactly. Yeah, so it's very powerful. So you're based in Canada. You're in Vancouver. I'd love you to say that menopause care is better over with you than it is in the UK. But are you going to be able to tell me that? So I think that you have to continue to look for the doctor who knows about it. I think that's really important to make sure you're advocating for yourself and make sure you do get a specialist who knows about POI. So, I mean, you know, I think navigating the healthcare system can be really difficult. I don't think it's perfect by any means. I am lucky that I have found a doctor who

at least is a specialist about menopause and POI and can prescribe me HRT. And when I ask questions, knows what I'm talking about. You know, so that's really amazing. But I definitely think that, Canada, we still have a lot of work to do with the medical system. Because like, as I said, even recently I've been having a lot of symptoms and I've been desperately trying to get any kind of hormone blood tests and I have been denied by doctors who don't know anything about the condition saying wait to see your specialist. So that's something that's difficult is the wait times, waiting sometimes a long time to get in to see specialists. Yeah. And POI affects one in a hundred women, probably more actually, certainly in the UK and it's probably the same in Canada.

But menopause affects 50% of the population. So it's so frustrating that there aren't enough medical experts, but you shouldn't all be experts. It should be basic medicine. It should be that every single physician, healthcare provider, has some knowledge. But you also do work in other countries as well, don't you? Yes, so I can tell you a little bit. So, I mean, for my main work, what I do is I work in film,

sets and I do performing arts and acting and I work in film and TV. But then as a volunteer, my partner and I have created a charity and it is called Innocence Lost Foundation. And that's based off of his personal experiences. It is for former child soldiers and communities that have gone through war. So my partner is originally from Sierra Leone in West Africa. And so for our first project, we're going to be building a community center there, which will have a water well, a medical clinic and education, skills, training, and therapy programs for the community and for former child soldiers. Yeah, so we actually have just recently gotten to our phase one goal. We've been fundraising for many years and we've now reached our first phase one goal. So we are, you know,

COVID's delayed things a little bit, but we're planning on going to Sierra Leone this year and to begin the project this year. And right before COVID happened, I went to Sierra Leone for the first time. And I love traveling. It was so wonderful to go to my partner's home and meet his family. That was like a personal trip and to get to go and be there and see the country and it was my first time going to Africa. So it was beautiful. And yeah, so that's something that we do on the side as well of our work. So it's a project we've been fundraising for many years and I'm so excited that it's going to become a reality soon. That's amazing. And I wonder what people in Sierra Leone know about the menopause. They're all going to be, well, the women are going to be affected. And, you know, I look at some African countries

and I really worry actually about these women, especially a lot of women who've had difficult childbirths in the past. A lot of them have fistilers or injuries. Some of them have had cutting that's happened. And a lot of these women, their symptoms were really worse than during the menopause. And I'm sure that very few of them, will receive any sort of care or treatment, and they probably don't even know what's happening to themselves. Yeah, it's a huge issue, and I really do hope that as things progress,

that medical care becomes a little bit more accessible in Sierra Leone, especially. I mean, Sierra Leone is where I know the most about, but I still don't even know about any data or anything to say, you know, what kind of treatment women are getting there for menopause or infertility or POI or anything like that. They probably don't. To be honest, we're trying to do some work in Kenya, actually, to train doctors over there and healthcare professionals because they need training, but also the women need some education as well,

so they can join the dots. And I was talking to Jane Simpson, who's a pelvic floor physio the other day, and we were talking about urinary leakage, which is very common, especially as people get older in any country. But if someone's had difficult childbirth, obviously the perineum isn't so good, they're more likely to have some pelvic floor problems, bladder problems, and in a lot of African countries, you get very ostracized if you have any urinary leakage at all. And it's so preventable with the right treatment, actually, and treatable as well. But I wonder how many women are really being turned away from society. Yeah, it's such a taboo subject too, and even just coming public about even going through

infertility, whether or not it's from POI or something else, is really difficult for women, some women I know personally as well. It's very difficult to talk about because, yeah, there is a big stigma, unfortunately. So it's trying to normalize the conversation, actually, is the most important thing because you know how you felt when you were first diagnosed. And for a lot of people who haven't got access to the internet or they don't know how to talk to. And, and also, also the thought about fertility in some cultures is huge, you know, and I just worry about women who just feel so isolated and so alone. And we know there's a mental health aspect of the menopause anyway, but even if they weren't affected with the menopause of their mental health,

of course their mental health is going to be affected by this turmoil that's going on and not being able to share and talk or even get treatment. I'm so happy that at least to social media, there's a bit more happening. Like, for example, Anita's page blossom living with POI, you know, everything that she's doing. So I'm really happy that we were able to work together and create something like this and share more and talk more about our experiences. And I just do have hope for the future that as things continue, that we can continue to do our best and more women around the world will also join in more doctors.

and just, yeah, continue doing what we can. Absolutely. I do, a lot of the time I feel very negative, but every often I have glimmers of thinking. No, you're very realistic though. It's difficult. It can feel overwhelming. Yeah, for sure.

But people are listening, and I think the most important group of people are listening are women, actually, and healthcare professionals are listening. Actually, I got a lovely email tonight from a male GP, just thanking me, not just for the healthcare professional, education that we provide but also for balance because it's making his consultations a lot easier because women are empowered and then they can go with a diagnosis they've often made themselves with a treatment plan they've often thought about themselves and so the consultation

is a lot more focus so I feel that with this joined up approach we can empower women and their partners and families and work colleagues but also they can get treatment so it's not just talking about it. It's actually having action and treatment. That's incredible. And yeah, like all of the resources that you're putting out are so helpful. And for the balance app, right, a lot of people do have access to mobile phones. A lot of people in Sierra Leone do have mobile phones. So if they could get the balance app, you know, that can be something that can be very helpful. So that's really amazing and positive too. Yeah, absolutely. So you'll have to come back and tell us how you've got on educating Sierra own because the charity

work you're doing is just incredible. I just love seeing what you're doing on social media. So I'm really grateful for your time. And, you know, I know it's a big thing talking about your own experience, but I think people will listen and learn. Some people will be very shocked to realize that teenagers can get menopause too, but it's very important that we're all aware of it. So we can look out not just for our friends, but maybe our offspring or maybe our friends offspring or maybe our friends offspring or anybody can become menopausal and we all will at some stage so it's very important to be talking and sharing so I'm very grateful so before we finish I would like three tips I've always asked for three tips but I think it would be really useful for just three things that you think would

have made your journey easier if you'd like you say known what you know now when you were just a teenager. Yeah, so kind of in general, I was thinking about the three tips. And I think advocating for yourself is really, really important. So that was my number one. It's not, as we've been saying, not enough is known about POI. So even though it's frustrating and exhausting, it is really important to keep advocating for yourself until you find a doctor who does know and can be supportive and you can work together with them. I think that's very important. And then number two, self-care and health is the most important. So something I've been working on all my life and trying to learn about putting my health first,

because if you're not healthy, then you can't do anything. And you can't also do anything to help anyone else either. So I've been working on boundaries and learning more about that and making sure to put my health first. And then I think the third thing might be don't underestimate the impact of hormones on your health. And on your mental health, you know, we see how it's very important to be taking care of your mental health as well. Yeah, really good tips. And it's all about a holistic approach. It's not just one thing, but it's having as many pieces of that jigsaw puzzle as possible. So we can really enjoy future health as well. So thank you so much for your time. It's been great and very, very empowering. So thanks, over. Thank you so much for having me today. It was really nice talking with you.

For more information about the perimenopause and menopause, please visit my website, balance hyphen menopause.com, or you can download the free balance app, which is available to download from the App Store or from Google Play.