Joining Dr Louise Newson on this week’s podcast is Suzie Aries, who shares her story of menopause following treatment for a rare and aggressive ovarian cancer in her 20s.

Suzie talks about her cancer diagnosis and treatment, including raising £250,000 to fund treatment not available on the NHS. She also shares the realities of menopause at a young age, how HRT has helped her menopause symptoms, and why she takes HRT for her future health.

Finally, Suzie offers advice for women on how to advocate for themselves during healthcare consultations, and why being knowledgeable, confident and curious is key.

You can follow Suzie on Instagram @suzieclair11 and find out more about her story via her Facebook page Suzie Aries: kicking cancer’s butt.

Click here to find out more about Newson Health.

Transcript

Dr Louise Newson: [00:00:11] Hello. I’m Dr. Louise Newson. I’m a GP and menopause specialist, and I’m also the founder of the Newson Health Menopause and Wellbeing Centre here in Stratford-upon-Avon. I’m also the founder of the free balance app. Each week on my podcast, join me and my special guests where we discuss all things perimenopause and menopause. We talk about the latest research, bust myths on menopause symptoms and treatments and often share moving and always inspirational personal stories. This podcast is brought to you by the Newson Health Group, which has clinics across the UK dedicated to providing individualised perimenopause and menopause care for all women. So on my podcast today, I’ve got someone called Suzie who doesn’t look like the average menopausal woman that you Google who’s got grey hair with a fan, who’s middle aged or even in her late 50s. So Suzie is young and she’s going to share her story, which I hope will help to educate and reassure many people. So thanks for joining me today, Suzie. [00:01:23][72.9]

Suzie Aries: [00:01:24] No problem. Yeah, happy to be here. [00:01:26][1.3]

Dr Louise Newson: [00:01:27] So just tell me a bit about you and the age that you were when you became perimenopausal, menopausal, when your hormone levels changed. [00:01:35][8.8]

Suzie Aries: [00:01:37] It was probably about, so I’m 32 now, and it was probably three or four years ago that I noticed a big change in my hormone levels, in my energy levels, getting their hot flushes and all of those kinds of symptoms. That, well I suppose show that you might be menopausal. But for me, it was something that I probably expected because I’d gone through a lot of cancer treatment. I was diagnosed with ovarian cancer when I was 25, so I’d gone through a lot of cancer treatments, chemotherapy, surgeries, various different things. And finally, I was told that the last kind of option was to have full abdominal radiotherapy. And so that was kind of the point where I thought, okay, that’s my, I suppose my fertility journey is ended here. And I suppose I knew I’d go menopausal, but I didn’t expect it to happen in the way that it did, really. [00:02:37][60.5]

Dr Louise Newson: [00:02:37] So yeah, so 25 diagnosed with cancer of the ovaries is not very common, is it? [00:02:43][5.6]

Suzie Aries: [00:02:45] No, no. It’s incredibly rare. I, hindsight is that I had all of the symptoms for it, but I had no idea of them at the time. And I it wasn’t something that was on my radar. I don’t think it’s something that’s on anybody’s radar when they’re 25, I was trying to make ends meet as an actor at the time and, you know, working my day job and then trying to do my dance rehearsals and things in the evening, it’s just, it was a lot. And and then I was feeling really fatigued. I was feeling bloated. I needed to go to the toilet all the time. I felt like an old woman going back and forth to the toilet when I was trying to sleep. And you know, all of the symptoms were there. And then I got the diagnosis and it was a massive life changing experience from there really. [00:03:32][47.0]

Dr Louise Newson: [00:03:34] So was that picked up on a scan? [00:03:35][1.1]

Suzie Aries: [00:03:36] Well, actually, I have to admit, there are a lot of other people that would have a different story. But I cannot thank the NHS enough for my diagnosis because, well, I suppose my, not even my GP. It was a nurse practitioner at my doctor’s who I ended up going to see when I was feeling really poorly and I was explaining to her the symptoms I was having and, you know, tenderness in my tummy and all these kinds of things. And she immediately noted those symptoms as what they potentially were. Even for someone at my age, I’ve heard so many other stories of young people that have been diagnosed with cancer very late because they’ve been turned away and said, well, no it couldn’t possibly be this. I mean, she said, worst case scenario, it could be cancer. And that’s exactly what it was in the end. So I absolutely have her to thank for getting me on that journey very, very quickly, because by the time I was diagnosed, I was probably stage 3 or 4, which for most people is not good at all in terms of prognosis. But somehow I manage to still be here. So thank goodness for that. [00:04:44][68.3]

Dr Louise Newson: [00:04:45] Which is wonderful. But obviously the treatment that you’ve had has stopped your ovaries working and our hormones, a lot of our hormones are produced in our ovary, but as many listeners know, also produced elsewhere. But without your ovaries, whether they’re removed or they’ve had chemotherapy or radiotherapy or damaged in some way, then people do become menopausal. But in a lot of women I speak to who’ve had cancer treatments for different types of cancer that have had treatments that have affected the way their ovaries work, especially when they’re young, the concentration has been on fertility. Menopause might have been mentioned, but there are two things that concern me, and I don’t know whether it was mentioned to you. One is the symptoms, because symptoms can really affect people in so many different ways. But also as a physician, the future health risks of not having hormones is something that I don’t hear spoken about enough. And I understand in the crisis time, the most important thing is to focus on the cancer. Absolutely right. But and the big but is we need to think about after the cancer, beyond the cancer, because hopefully, as you’ve proven, prognosis outlook can be very good. And you’re young, you’re only in your early 30s. So it’s that future health benefits of having hormones that I worry that isn’t discussed enough. So I don’t know was it discussed much with you at all, Suzie? [00:06:09][84.4]

Suzie Aries: [00:06:10] Well, I mean, the only people that spoke to me about my future health was you guys. When I spoke to one of your lovely doctors. I at the time of when I, you know, started speaking to gynaecologists and kind of menopause doctors within the NHS, they just looked to me like I was anybody else going through this, which I really am not. I am a lot, lot younger than most people that do go through this, which means that my hormone levels need to be higher and not just to kind of sort out the symptoms like hot flushes and things like that, but also for the future. As you say, I don’t want there to be a problem in the future where I, I don’t know, as you say, you can get heart disease if your hormones aren’t right, you’re at higher risk of getting dementia if your hormones aren’t right. And I don’t want that to happen. Obviously, I want to try and live as long and as healthier a life as I possibly can. [00:07:10][59.6]

Dr Louise Newson: [00:07:11] Yeah. And it’s really, it can be very confusing for lots of people because actually even if you look at the insert for HRT, I don’t know if you’ve ever done it for your hormones and it will say risk of ovarian cancer. And that’s actually come from a study, an observational study that was done quite a few years ago, but it was using older types of synthetic hormones. And even then, the risk is probably not there. It’s so small. But when it’s observational, it’s not really good data. But we don’t use those types of hormones. We’re just using natural. We’re just replacing like for like. And so we know the hormones are very anti-inflammatory. They’re likely to reduce any inflammation, any cancers going forwards as well. But if, when we don’t have really robust evidence, certainly in my clinical practice is we share uncertainty with patients and we say there may or may not be risks, but we know that there are benefits and it’s up to that individual. But if you haven’t had that conversation with anyone and haven’t been allowed to have a choice, then you’re very much left on your own, aren’t you? [00:08:10][59.6]

Suzie Aries: [00:08:11] Well, yeah, absolutely. And it was only I think it was when I spoke to you guys or I questioned about the risk of cancer returning based on having HRT, because that’s one of the things that the doctors say to you is that if you take too much of this HRT, your risk of getting cancer. And one of the biggest kind of takeaways that I’ve had from you guys is that actually I think it was someone said there was no, the risk of getting cancer was no higher than that of getting cancer when you are older anyway. [00:08:44][32.8]

Dr Louise Newson: [00:08:45] Yes. So people are still going to have a risk, but that doesn’t mean it’s related to the hormones. And I think that’s really important because there will be people that will get recurrances, that will have a new cancer on HRT, but there will also be people that will trip down the stairs or, you know, fall over and that’s not related to their HRT. So but because I think everyone is so scared, if something negative happens, it’s easier to blame the HRT. But the problem is all hormones have been grouped together as evil, whereas our own natural hormones, you know, you’re designed in your 30s to have hormones and they’re very beneficial for your future health. So to have them taken away and not replaced without good reason could affect your future health and day to day functioning if you were getting symptoms as well, which it sounds like you were. [00:09:35][49.3]

Suzie Aries: [00:09:36] Yeah, absolutely. And interestingly, I work as a sign language interpreter, which means that you need to have your processing there. You need to be able to process information from one language to another. And if you’re suffering with brain fog, like I know a lot of women do when they’re menopausal, that processing becomes that much harder and it’s already hard anyway. I was working with a lady who was struggling to do her job and she said, yes, I’m in the menopause, I’ve got brain fog. And in my head I was going so Why are you not doing anything about it? This is your job and it’s starting to affect your job. And she’s probably freelance like most interpreters are. And so there’s no way that, you can’t, like, take a day or there’s no policy, there’s no menopause policy to protect her if she’s free;ance. So, that really hit me bad because I went, gosh, okay, well, if that was happened to me, I’m a new interpreter. I can’t, I don’t want to blame anything on the menopause, especially when there’s something you can do about it. [00:10:38][62.8]

Dr Louise Newson: [00:10:39] Yeah, and that’s so important, Suzie, because we know the conmmonist symptoms are those affecting our brains. Because our hormones work in our brain, as you know, but especially memory processing and cognition, but even, you know, our mood as well. So a lot of people feel quite flat. They feel quite joyless, they have less motivation and they’re more tired. But we know that actually the way our brain works is really crucial for the way we function, especially in our work. And if you have a job where you need your brain to work very quickly and process things very quickly, and you’ve been used to having that, when it’s taken away from you, it can be very difficult. And for so long we’ve forgotten that our hormones have a role in our brain because it’s been about flushes, it’s been about fertility, it’s been about periods. But actually, you’re absolutely right, because so many people are giving up their jobs or reducing their hours or taking different jobs, often at lower pay, because they can’t function at the level that they’re used to. And we see it time and time again. And it’s very sad when they think, well, that’s just my lot. That’s just because I’m menopausal, without having those hormones back, because we know they improve the connectivity of the neurones in the brain, they help the brain to function. We’ve known this for many years. It nearly a hundred years we’ve known the effect on the brain, but it’s been ignored. And I can’t quite understand why. [00:12:06][86.7]

Suzie Aries: [00:12:06] So one of the jobs that I did as an interpreter, of course, I adhere to a code of ethics and you have to remain impartial is one of them and interpret as accurately as you can and this, that and the other. And it was a GP appointment and I go to GP appointment and this woman is reeling off what I know to be menopausal symptoms. Of course she doesn’t know that. And the GP kind of says, okay, how old are you? Let’s have a look at how old you are. Okay. You’re this old, right? That’s probably a box ticked. It could be menopausal symptoms and. Okay, well, I think we could try some HRT, But, you know, I do have to warn you that, you know, there’s this, that and the other, and that’s the risk of cancer in there’s. And I was there interpreting this information to this person through gritted teeth going I, I just I can’t say anything, you know, because this is a medical professional, but I know this to not be the case. So it was a bit of a tough ethical moment for me I think, having knowing what I know about HRT and the menopause and then having to give what I thought was incorrect information to this person with very you know, you must be cautious. And after a month they said, I think they said after a month, if your symptoms don’t go away, I think we should probably stop. And again, I was going, no, that’s not long enough. [00:13:26][80.1]

Dr Louise Newson: [00:13:27] So did you say anything at the end to that doctor? [00:13:30][2.7]

Suzie Aries: [00:13:32] I didn’t feel I had the place to. But I think if it were to happen again, I probably would. Actually, I take that back. I actually said it’s worth looking on Newson Health if you want to get up to date, accurate information. They have a lot of information on there. I think I signposted to you guys because I know that you are the best, you’re kind of a specialist at it. But yeah, that was a bizarre, a bizarre situation to be in. [00:13:56][24.2]

Dr Louise Newson: [00:13:57] Absolutely. And it is very difficult for people because they’re told different things. And every day in the clinic we see and speak to women who have been told different information. And there is confusion because of this, lumping all the hormones together, thinking they’re all the same and metabolically biologically, they’re very, very different in our bodies. And our own natural hormones, of course, are not made to be detrimental because of course they’re not. We’ve got hundreds of hormones in our body and they work very well and especially when people are younger. I did some work with NHS England a while ago. It was a big national programme for menopause and they said that they were going to focus on women over the age of 51. And I actually put my hand up and said, Actually, if you’ve got limited budget, I would focus on the one in 30 women who are under the age of 40 who have an earlier menopause. And they said, well, it’s not common enough, Louise, to worry about. And actually, I sort of thought, but I kept my mouth shut because I often get, you know, misinterpreted sometimes. But actually it is common enough. One in 30. So in your average class at school, that’s one child or, you know, it depends if they’re mixed classes of course, there might be one in every two classes, but that’s a lot of people that will grow up and become menopausal at an early age. Far more common than other conditions. But the health risks associated with it are huge and we know from some studies that women who have an early menopause don’t have typical symptoms so a lot don’t have flushes or sweats, but they still have these low hormones. And so we should be more proactive as health care professionals. We should be going in to companies and organisations and talking about hormonal health, because a lot of people, if it happens without having something like cancer treatment, it can be more gradual. But there are signs there. They might have had worsening PMS or worsening PMDD. They might have skipped a few periods, they might know that they’ve got a condition that might increase their risk of having an earlier menopause or they might have lots of family members that have had early menopause as well. So we need to be really proactive in picking these people up to reduce suffering, but to improve future health. Because if you don’t have your hormones at a young age, you’re more likely to drain the NHS at an older age because you’re more likely to have more conditions. So it is cost effective, but it doesn’t sound very exciting. And I know when I was a junior doctor, someone said to me, If someone comes in, Louise, who hasn’t had their period and young, just make sure she’s not pregnant. That’s all you need to do. So I hate to admit, but for many years that’s all I did, because I didn’t even think about women who are young menopausal because no one had taught me. So I’m making up for it now. But there will be other doctors who will have been taught by the same people and my age who won’t be thinking. So how do you think we can get more information out? And how do we empower clinicians when we’re the patients? Because as you say, even just interpreting, you can feel quite threatened when you’re, not threatened, but quite, it’s difficult when you’re, I’m talking now as a patient, but when I go and see a doctor, I know their time’s precious. I feel a bit nervous. I take every word they say very literally, and it’s very difficult to have a discussion depending on the doctor, especially if they’re very closed and quick in their consultation process. Some doctors are very open and reflect and say, What do you think? Are you happy with that? Is there anything you want to ask? And then it makes it easier for you. But I do feel as patients, we have to be our own advocates. Many people know I can’t get the dose and type of hormone I’m on on the NHS and I’ve given up trying, but it’s still very difficult. But how do you think that we should be better advocates as patients? [00:17:48][230.5]

Suzie Aries: [00:17:50] I think from my own experience, and that’s including my cancer journey, I have been a huge advocate for myself. I don’t think I would have been had I not had my mum there with me. She advocated for me and we advocated for me together and throughout the whole thing. But I think it’s just it’s having the knowledge yourself rather than going in there with no idea. I think it’s that thing of empowering yourself with knowledge and getting the knowledge and kind of knowing the symptoms, knowing, you know, what’s wrong with you and getting the information about what potentially you need before you go in. Because otherwise you’re going to be sat there nodding your head at whatever this professional is telling you. And of course, they’re a professional. They’ve been through years and years of training, but they don’t have the, especially the GPs, the specific knowledge base to know what you need in this situation. And then it might take a year to be referred to someone who may well be a specialist, but is following these very specific guidelines which aren’t going to match you. And so I think is having that knowledge, but also being able to be quite assertive. In the deaf community, it would be this sign [signs]. It’s one of my favourite signs, I think. It’s that being confident and being assertive to back yourself when you’re speaking to someone and say, Well, for me, for a young person, I am not your usual. I’m not the most common person that has the menopause, but it’s just backing myself to know there’s something not right. And I don’t want this to bother me forever. I think it’s a mixture of those two things. Going in with knowledge and having the confidence to back yourself. [00:19:35][104.9]

Dr Louise Newson: [00:19:35] I think that’s so important because I know certainly with some of the treatments that you had for cancer, you had to really be your own advocate, didn’t you, and seek the right treatment for you? [00:19:46][10.7]

Suzie Aries: [00:19:47] Yeah, absolutely. There was one particular treatment wasn’t on the NHS for me, which was immunotherapy. I think it’s becoming more widely used now, but still not for my cancer. I mean, my cancer was incredibly rare anyway. It was a small cell ovarian cancer of the hypocalcaemic type. Bit of a mouthful, but that treatment wasn’t available on the NHS. There was a very small study of four women that had gone through radiotherapy plus immunotherapy as a combination, and three out of four of them had come out cancer free long term afterwards. And we just went, Well, that’s good enough for me, let’s give it a go. But the NHS were incredibly reluctant to do it. They did send off funding applications and things, but everything was turned down, so we had to fundraise £250,000 for it. But I mean, that’s where I start to believe in humanity again because I got, you know, video went viral. I had people from all over the world donating to me. And so it was incredible. It was, that was a case where the NHS were very reluctant or very sceptical about this treatment because there wasn’t 4,000 trials of it. There was four. But I think it was where both me and my mum went, This is the right thing to do, this is what we want to do. There’s what, what are the other options? We’d say to them. They didn’t have any other options and so we just pushed and pushed and pushed until they said yes. And I think that’s something that you also have to do for HRT and for menopause treatment. I’m actually now, having pushed a lot and having, as I said, used the knowledge that I’ve got from speaking to you guys and from my own body and my own experience, I’ve now managed to convince the NHS to fully prescribe my HRT for me now. The testosterone was only recently added and I’m absolutely thrilled about that, and that’s a large sum per year that I’m now not going to have to pay for. Well, hopefully not. [00:21:51][124.6]

Dr Louise Newson: [00:21:52] Which is wonderful. And a lot of people come to our clinic and increasingly GPs take over their care for their HRT, not always testosterone, but increasingly it is, which is so important because it’s very easy to get other drugs such as antidepressants or blood pressure drugs or statins or whatever. And they’re not even drugs, they’re just natural hormones really. We need to think very differently, change our language and think about the benefits. And actually, if you’re feeling well, which thankfully you are, if you’re healthy, which you also are, you’re less likely to go back to your GP, you’re less likely to be referred to the NHS. You’re saving money even though they’re spending money on HRT, which is actually quite cheap. So it is a cost effective thing. And when you’re young you know you’re going to be on HRT hopefully for decades, you know, for many years. So it should be available for you. It shouldn’t be something you have to come to a private clinic for. It doesn’t make sense, does it? [00:22:51][58.9]

Suzie Aries: [00:22:51] No. No, absolutely not. And I think most specifically, testosterone. I think that was the turning point where I started on a bit of progesterone and a bit of oestrogen. And then it was… It like got to the point where I was having enough oestrogen and I was feeling fine. But I’m a very sporty person and I was still feeling a bit unmotivated and a bit, just a bit lazy and not full of enough energy for myself to want to actually go out and do the exercises. And I think at the time, I think one of the big ones was that I just didn’t really want to have sex with my partner, which, you know, it’s not something you want as a 30 year old. You don’t want to just be there feeling like a cabbage. So and it was the testosterone that immediately well, not immediately. It took a little bit of time to work, obviously, but it just, that was the change. But then when I did initially ask the NHS, they were saying, no, no, it doesn’t fit in with our guidelines of anything. And I just went, I want to throw your guidelines out the window. Your guidelines are just this one size fits all thing, and that’s not the case here. But now they don’t. [00:24:01][69.8]

Dr Louise Newson: [00:24:02] Yeah. And I think that’s very important when we do mention guidelines, because there’s guidelines in everything that we do as healthcare professionals. But they are a guide. They help assist in a general population. But the thing is, is that we are all individuals. We have individual lives. We have individual choices. We have individual decisions about what risk or benefit we’re prepared to take. And we all have our own lives. But also we can make our minds up if we’re consenting adults. And we also have the ability to change our mind. So if you wanted or read something, you can stop your treatment, you can restart it. It is up to you as a individual. And what really saddens me with so much in hormone health is that that decision isn’t even there. It’s not allowed almost. It’s sort of felt like you really have to plead and justify to have something that could make a real difference to you. And if it doesn’t make a difference, then don’t continue. And but people often aren’t even able to start or like you say, optimise that dose because it can take a while to be on the right dose and type. And then that’s why it’s important like you say to see someone who’s really knowledgeable, but works together with the patient. You know, it’s not very rewarding as a doctor to be in a uni-directional relationship where you’re the person in control, you’re the person as a doctor who is basically telling the patient what to do. I do not like those consultations. Very different for my husband, who’s a surgeon. He has to be in control in the operating theatre. Very different. But actually, when it’s a consultation it’s a two way process and even for him, it’s a two way process when he’s deciding the operation. And often a patient might want one operation and he’ll advise something else and they talk it through. But somehow we’ve lost the ability to talk and share, especially when there’s uncertainty. And that’s a great shame. So it’s amazing that you’ve been such an advocate in so many ways. You know, hormone health is just one part, but you have been a huge advocate for your health and you’re living proof, how healthy you are now, aren’t you? [00:26:15][133.6]

Suzie Aries: [00:26:16] Yeah, yeah, absolutely. And I think there’s also well, I suppose on a slightly different note is that obviously women, I’m a woman in my 30s and I am on HRT and in the menopause, which is obviously, as we’ve already said, a unique situation. And I recently met my, who will now be my lifelong partner, the love of my life. And I knew the moment, it was probably it was like our second date or something. And I’ve been dating for, you know, a few months and hadn’t said anything to. I think I’d said something about it to one person who I thought, they seemed quite nice. And as soon as I mentioned it to them, they couldn’t run fast enough. Whereas as soon as I told my current partner, this is the situation. I can’t have children in a biological way. I’d like to have children in a different way. I do have to take HRT every day, you know, rub this gel on my legs, you know, and things like that. And he came back with the most amazing response to it. And he’s been nothing but supportive and kind and where a previous relationship where I’d started it, would always say, have you washed your hands, make sure, you’ve got to wash your hands afterwards. And of course I’d wash my hands afterwards. But it was that. It was almost like a punishment, which wasn’t particularly nice, whereas I’m just, I’m accepted for who I am. And I have to be honest, I get the odd, not brain fog, but the odd kind of like thing where my brain is a bit meh and I don’t know whether that’s just something that comes up every so often. Whether it’s the menopausal symptoms, I don’t know. But I’m given nothing but love for that and appreciation. And I think that’s one massive thing that’s helped me accept where I am, is that I am now with a person who accepts me for who I am, for the gel that I rub on my legs, for the tablets I take at night, and for the fact that we’re going to either adopt children or go surrogacy route and and we’re going to have a lovely family at some point in the future anyway. And so I think that has that has been a huge help to me, kind of on my journey is just being accepted for who I am now. [00:28:24][128.5]

Dr Louise Newson: [00:28:26] What a brilliant way to end being accepted for who you are. I think we all should think more about that. There’s so much I realise as I get older we can’t change about ourselves, so we just have to embrace and make the most of it. So I’m very grateful. But before we end, three take home tips and I think it should be three tips about how to be the best advocate for yourself for whatever treatment you want or you don’t want, you might be refusing treatment. So what are the three things that you’ve learned that you can share about being an advocate for health? [00:28:56][30.6]

Suzie Aries: [00:28:58] So firstly, as I said before, the gaining knowledge yourself, because you know, you’re an example of where there’s incredible knowledge there and resources that people can use to gain that knowledge before they go to an appointment. I think being confident and backing yourself with that knowledge. So I suppose those two come hand in hand. And I’ll add just off the top of my head probably being curious as well, rather than just kind of like taking your lot and just going, oh okay, well that’s going to happen. It’s that thing of, but what if, what if it could be better? What if life could be better? And what if I could feel better rather than just, oh I’m just going to have to feel like this now. I think it’s curiosity is another big one as well to just be curious as to whether things could be better, because they probably can be. Testosterone, you know, being that example for me. So those are my three. What wa it? Knowledge, confidence, curiosity. [00:29:55][57.2]

Dr Louise Newson: [00:29:57] Love it. Very good. Thank you ever so much, and keep going. [00:29:59][2.5]

Suzie Aries: [00:29:59] Thanks you much. Yeah, will do. Thank you. [00:30:02][2.4]

Dr Louise Newson: [00:30:07] You can find out more about Newson Health Group by visiting www.newsonhealth.co.uk and you can download the free balance app on the App Store or Google Play. [00:30:07][0.0]

ENDS

The post Navigating menopause in my 30s after ovarian cancer: Suzie’s story appeared first on Balance Menopause & Hormones.

This week on the podcast, Dr Louise is joined by Elin Sullivan, a young woman who suffered a myriad of symptoms for years before getting the right treatment.

Elin first experienced recurring urinary tract infections at 19 years old, and twice required hospitalisation. She also suffered from sweats, sleep disruption and fatigue, shaking and lichen sclerosus. After a chance encounter with Louise, she tried local hormones, which was transformative, and now takes testosterone to balance her low levels.

Elin talks about how hard it can be to experience perimenopausal symptoms at a young age and shares her tips for other younger women experiencing issues that they think might be down to their hormones:  

1. Although it can feel really hard, don’t stop advocating for yourself. You may have self-doubt or worry that you’re wrong but keep pushing. My doctor was sick of seeing me, I was there probably every week, but don’t give up.
2. Rather than just giving your doctor a list of your symptoms, show them when they were happening as well. Have a log of symptoms and anything that might have affected them on that day. This will help your doctor rule out things but also show if your diet, etc, has an influence.
3. Don’t be scared to try medications or suggestions. It might help but if it doesn’t it can potentially help your doctor decide the next step. I never believed local HRT could make such a big difference but am so glad I tried it.

Click here to find out more about Newson Health.

Transcript

Dr Louise: [00:00:11] Hello, I’m Doctor Louise Newson, I’m a GP and menopause specialist, and I’m also the founder of the Newson Health Menopause and Wellbeing Centre here in Stratford-upon-Avon. I’m also the founder of the free balance app. Each week on my podcast, join me and my special guests where we discuss all things perimenopause and menopause. We talk about the latest research, bust myths on menopause symptoms and treatments, and often share moving and always inspirational personal stories. This podcast is brought to you by the Newson Health Group, which has clinics across the UK dedicated to providing individualised perimenopause and menopause care for all women. So today on my podcast, I’m delighted to introduce to you someone called Elin, who is young actually, she’s only 27 and I recently met her in a weird way. I meet all sorts of people in things that I do, and I’ll explain more in a minute. But firstly, I’m just going to welcome Elin to the podcast. So thanks ever so much for joining me today. [00:01:20][69.2]

Elin: [00:01:21] Ah, thank you for having me. [00:01:22][1.0]

Dr Louise: [00:01:23] So I really believe in connections happen for a reason. And it’s really, really weird actually. So I am very conventional. I’m very traditional. I’m not very artistic at all. And when one of my children a couple of years ago now had some piercings done in her ear, I was really like shocked because she, they had a cartilage. And then my middle daughter’s had all sorts of piercings, and I thought I’d be one of these mums where my children maybe have doubles, and that’s about it. Clearly not. So I shocked them a few, a couple of years ago and had my conch pierced, which they thought I would never do, and I did it as a bit of a rebellious thing so people could realise that I’m not quite as conventional and conformist as maybe I have been in the past. And it was really painful, and it took ages to heal, and the wind blowing in my ear was awful. And then my oldest daughter and I Jess decided to go and get another piercing done, and I wanted to get my cartilage done. So we went to a different place and we met you. I don’t know if you remember, Elin. We both came in… [00:02:20][56.9]

Elin: [00:02:20] Yeah, I do. [00:02:20][0.0]

Dr Louise: [00:02:20] And Jessica went first and we chose and it was such an amazing experience because you were so calm and you explained everything, and you put me at ease. And I didn’t feel like I was far too old to be sitting in a tattoo parlour, like having my ear pierced and like, I walked out and we walked through London, Jess and I, and my ear the wind didn’t hurt on my piercing and it’s just been incredible. I’ve really enjoyed having it. And I remember you saying when you were piercing my ear that you were feeling quite tired and you had some sort of condition. And obviously I think everything’s related to hormones, but it wasn’t appropriate because I was nervous to ask you any questions. And then Jess, my eldest daughter, then had her eyebrow done and something went wrong with it. I think there was a one of the bits came out, so she went back to see you, didn’t she? [00:03:11][50.6]

Elin: [00:03:11] Yeah, she did a couple of days later. [00:03:12][1.3]

Dr Louise: [00:03:13] Yeah. And she came to talk to you and you can explain what you said to her. But then she came out and phoned me and she said, Mummy, I’m really worried about Elin. And I said, who? I’m sorry. And she explained, she said, I’ve just gone in back into the piercer and I think some of it’s related to her hormones. And I told her to listen to your podcast and find out more about what you’re doing. But I feel really sad for her because she’s really struggling. So then I said, just give her my details and I’ll talk to her. And that’s what happened. So what happened with Jess? What did you say to her or what happened for her to think about your hormones? [00:03:48][35.3]

Elin: [00:03:49] We just got chatting quite very organically. Like none of it was forced but just chatting about how our day’s been, turned on to how are week’s been? And then just saying, I’m tired. And it turned into a question of oh, how long have you been tired? Like, gosh, when I think about it, it’s been months. And then it’s like, but doctors don’t seem to find anything wrong. And then I think that piqued Jess’s interest to be like, oh, have you, have you tried this? Have you tried that? Yeah. Nothing’s really flagged anything up with the doctors. And then we both said, oh, I think it might be hormonal. She said funnily enough you should mention that, my mum actually knows all about this and said, have you ever heard of this podcast? Have you ever heard of my mum? And I was like just when I met her when I pierced her a couple of weeks ago. And I went home and well, she came back later on that day and said she’d spoken to and I think we spoke very quickly after that. But she was very, very knowledgeable, explaining she basically reeled off every symptom I had, just like, do you suffer from this, do you suffer from that? And she said that she’d experienced it too. And it was really just refreshing knowing it wasn’t, I’m not the only young person that felt like that. It made me feel like I wasn’t crazy. So she just helped me feel like I wasn’t the crazy one. [00:05:11][82.0]

Dr Louise: [00:05:12] And isn’t that important? You know, in medicine, we don’t always have answers. We absolutely don’t. And I learned as a GP many years ago to deal with uncertainty and share uncertainty with patients. And often I say, I don’t know. Or I say it could be this, but if it’s not this, we can try something else or we can think about something else. So you’re 27 now, but you’ve had years of symptoms in different ways, haven’t you? [00:05:37][25.8]

Elin: [00:05:38] It probably started when I was about 19. It all started with urinary tract infections I just couldn’t shake. And that was going on up until probably about a year ago. And then starting on some steroids and everything seemed to get a little bit easier. Realising my skin was quite dry and everything I’ve read into the doctors they were kind of shocked that they couldn’t figure out what exactly was causing it. They couldn’t figure out why I wasn’t able to shake the infection. I’d be chatting to Harley Street, chatting to my urologist. And I tried everything and every diet, every drink, every tablet, every plant I could have tried and nothing helped. So it just escalated from there to the point where my body just didn’t feel like my body anymore. [00:06:28][50.3]

Dr Louise: [00:06:29] No and did you have sepsis at one stage with your, one of your urinary tract infections? [00:06:33][4.3]

Elin: [00:06:34] Yeah, it turned into a brief trip to A&E, probably twice I’d say I think, if I look back. Once when I was 20, once when I was 23, that would have been in lockdown. [00:06:49][15.1]

Dr Louise: [00:06:51] So very scary. [00:06:51][0.5]

Elin: [00:06:52] Yeah. It almost felt normal by that point, which is sad. And no-one really seemed to take it seriously. When I went back to the doctors and just getting those three days of antibiotics, it almost wasn’t made out to be a big deal. And then you would start reading into it. And sadly that’s how my grandma passed away, was from a result of urosepsis. So you realise the full extent of it then. [00:07:15][22.3]

Dr Louise: [00:07:16] Absolutely. So you had urinary symptoms. You had recurrent urinary tract infections, under urologists for many years, but then you had other symptoms as well, didn’t you? [00:07:26][10.3]

Elin: [00:07:27] The more recent ones where when I couldn’t sleep, I couldn’t sleep through the night, always waking up covered in sweat to the point where you just know it’s not normal. I’ve never had issues with that before, unless I did have like a urinary tract infection that was normal at the time, but constant shaking, like not being able to walk far distances without shaking and feeling like I was going to pass out, or having to lie on the floor with my legs in the air. And doctors just telling you to eat more, to sleep more to, oh if you exercise and push through it it will pass, but it never passed. It just kept getting worse and worse. And I, I loved going to the gym. I loved going on long walks, and I couldn’t even walk up a hill without sitting to try and catch my breath. I mean, the gym was just almost like, I started to think I was getting something like Parkinson’s in the end. I had really got into my own head with it but thankfully it wasn’t. I’m very glad to be… [00:08:23][55.8]

Dr Louise: [00:08:24] But it’s very scary, isn’t it? Because, you know, you want to exercise, you’ve got the motivation, you go, your stamina is not there. And, and you were saying that you were falling asleep on the Tube before going to work or coming back from work. [00:08:35][11.4]

Elin: [00:08:36] And I’m not a napper. I’m not a napper at all. I’m very strict with my bedtime. I wake up and go to sleep the same time every day and night. But yeah, that’s how I knew it was bad is missing my stops on the way to work, or missing my stops on the way home and yeah, it wasn’t good, I was falling asleep on the sofa before I’d even finished my dinner sometimes as well. [00:08:56][19.9]

Dr Louise: [00:08:56] Which is hard. And I know you’ve got a partner, and it’s hard when you’ve got a partner as well, because it involves them too, doesn’t it? [00:09:03][6.9]

Elin: [00:09:03] Yeah, yeah. But he helped me realise there was something wrong as well and kept pushing me to go to the doctors. And as soon as your name came up, it was like, you have to talk to her. Please talk to her. You’re not yourself anymore. [00:09:16][12.9]

Dr Louise: [00:09:17] Yeah, and it’s difficult because you were still having, you’ve still been having periods, haven’t you although they’ve changed and became quite sort of painful and heavy at times hadn’t they? [00:09:26][8.4]

Elin: [00:09:27] Yeah. Sometimes they didn’t even come at all. [00:09:28][1.8]

Dr Louise: [00:09:30] And so, you know, when we talk, and I’ve spoken before in this podcast about premature ovarian insufficiency or POI, it’s called, which is common. It affects at least 1 in 30 women. But that’s when periods have stopped. But we also know that perimenopause can last for ten years or so before periods stop. And so in medicine, I think it’s cruel and wrong to wait for something to happen if, as in the menopause, which is a year since your last period, if you’re getting symptoms. And so there’s no diagnostic test for the perimenopause at all. And then that makes it quite difficult. And obviously I felt quite guilty almost that I’ve hoicked you out of, you know, from piercing my ear to saying, let me try and help you. And I’m sure I said to you when I saw you and I often say to patients, I have no idea how much is related to your hormones. I can take a really thorough history and let’s see, and certainly I was worried because you had recurrent urinary tract infections and you told me you had lichen sclerosus as well, and your skin in your perineum was breaking down. You were using steroid cream, and that was a real problem. So you had these, I hope you don’t mind me saying, these local symptoms that were really and I remember you saying you saw someone and they had never seen someone so young with such severe lichen sclerosus. [00:10:48][78.6]

Elin: [00:10:50] Yeah, just explaining, oh, it’s an older woman’s problem. It’s an older person’s problem, it shouldn’t be affecting you. And they never explained with how I looked, they weren’t sure if I’d gain any colour back or if any of the sort of tearing would heal, and I couldn’t find any information online about it. There were no pictures to compare to, there were no, there was no-one else my age I could find information from. So I found a couple of groups, and was chatting to people on there, trying to get their experiences. But everyone, there’s maybe a couple that are under 30 in there but same. We’re all looking for the same answers. And since starting the local HRT, it was almost like a gamechanger. Like my skin. You wouldn’t even guess now, it looks normal. [00:11:38][48.1]

Dr Louise: [00:11:39] It’s amazing, isn’t it? And so for those people listening, and Elin’s given me full consent to share, but I started just giving you some local hormones. So that’s vaginal hormones. And I decided to give you Intrarosa, which is prasterone, which is DHEA, and it converts to oestrogen and testosterone in the vulva, but it helps all the tissues surrounding. And because you’re young, I didn’t want to just start giving you systemic hormone therapy without thinking what else could be going on, getting to know you more. And we also, I did some blood tests as a guide. We can’t do a blood test to make the diagnosis, but I wanted to see if your testosterone level and oestrogen level was on the low side, because it would help sort of build this picture in my mind that something was going wrong with your hormones. But the first thing I did was give you vaginal hormones. And actually they’re very safe. They’re very safe for everybody. And although people think that they can only be used in the menopause, we can give them in the perimenopause, but we can also give them to younger women. There are a lot of young women who maybe have had a baby or who are using contraception, or who are just prone to urinary tract infections. And so I knew it was safe. And I knew with vaginal hormones, if you stop using them, they wear off so they don’t build up in the system or anything. And your localised symptoms were so severe I just wanted to see because in my mind, also, if your skin and that area of your body improved with local hormones, it was more likely your rest of your body would improve with hormones as well. But I didn’t expect you to respond quite so quickly because your symptoms were so severe. But that area is very forgiving. You know, we know that if people have a baby, sometimes they have tears and awful, you know, just the whole stretching and everything, having a baby. And then, you know, the body heals itself very quickly. But it’s very reassuring. And just for those people listening who might have lichen sclerosus, it often can be a reversible condition with the right treatment. But often people are given steroids, which can reduce inflammation, of course. But one of the side effects of steroids is that it can thin the skin. And if your skin’s thin already, you have to, it’s a really fine balance, isn’t it, when you use local steroids. [00:13:49][130.2]

Elin: [00:13:50] Yeah, thankfully I haven’t experienced issues with that as it was all very quick diagnosis. Only on steroids for about a year and a half, maybe a year, just between a year to a year and a half before we started the local HRT and yeah, it’s so much better because it’s a lot easier. It quicker. You don’t have to wait for it to dry before you get dressed. It gives you all that time in the morning or the evening again that you wouldn’t normally have just sat on the bed just waiting for it to dry. [00:14:17][27.2]

Dr Louise: [00:14:18] It does make a difference. You know, I think as much as possible we want to just be normal. We don’t want to be labelled. We don’t want to sort of think about treatment that we’re using. So anything that’s easy and quick and also we’re more likely to do it. So this is a daily pessary once it’s, you know, been used often people don’t really realise that they’re having it because they feel well. And it’s a long-term treatment. Often people, once they start it, continue it forever and it’s fine, it’s safe to do that. So then you did that and then I did some hormone tests. And your testosterone level was very low. And testosterone levels are only a guide. And a low level doesn’t mean that’s the cause of your symptoms, of course, but you know, you’re otherwise super healthy. You look after yourself, you eat well. You tried, as you say, so many things before so I decided to give you some hormones systemically to try, thinking I’m sure most of it is related to testosterone, maybe oestrogen as well. But I don’t know how you felt, like a stranger from the street giving you hormones. Did it feel strange or did it feel the right thing to do? [00:15:20][61.7]

Elin: [00:15:21] Well, I’d just gotten to a point where I will try anything and after the local HRT reducing all of that tearing, my skin had gone from white to pink. I was able to wear certain clothes again I thought I wouldn’t be able to wear, just because the discomfort of clothing against my skin. So I was like, I’ll try it. I’d say HRT helped me feel about 40-50% better, the local one. And then I just feel like that last little bit was what I needed to get me back to how I felt when I was 17, 18, everything. It did feel a little bit strange, like the first time you’re putting it on, you’re like, I was never taught about this in school. Doctor never mentioned any of, the GP was very much pushing towards the coil route, which I’d already tried and didn’t want to try again. So I was just glad there was something else I could try. But yeah, I did feel a bit weird, but it’s a lot nicer than I’d say what my other options were that I’d been offered. [00:16:18][57.5]

Dr Louise: [00:16:20] Yes. And I think, you know, we were very clear that it might or might not help. It’s completely reversible. It’s worth trying. And having the blood test is reassuring I think as well to know that there was something that was, you know, low and hopefully treatable. And then I remember, usually when we start HRT often I arrange a blood test before someone comes back to the clinic. And again, blood tests are only a guide, but it helps guide sometimes the absorption to see if levels had improved. And I saw your results and they were significantly better. And I emailed you actually before I saw you, because I was so desperate to hear how you were getting on. And it’s just so lovely. I mean, I’m very privileged in my clinical job because the stories that I hear are dreadful initially, but it is the most transformational medicine I’ve ever practiced. You know, I’ve done a lot of diabetes care and asthma care and raised blood pressure care and, you know, I’ve obviously treated people with infections and all sorts, but the difference is incredible. And so you sent me this lovely email and then we had a consultation a few days later. But even if I all I could see were your eyes, I could see there’s such a difference in you. It’s just wonderful. [00:17:29][69.0]

Elin: [00:17:30] Yeah, my bags aren’t down to here anymore, down to my chin. [00:17:33][3.2]

Dr Louise: [00:17:35] But you tell me you’re working longer hours as well, which is good. [00:17:37][2.5]

Elin: [00:17:37] Yeah, I’ve picked up extra days. I’m back into a sleep routine which I hadn’t had for a while. So it’s always bed around midnight, wake up about eight, half eight, which felt impossible before. I’m back in the gym. I’m stronger than I was probably before I even started to get unwell. So everything is complete U-turn to how it was when we first met. [00:18:00][22.5]

Dr Louise: [00:18:01] It’s amazing, isn’t it? And, I, with your permission, told Jessica as well, my daughter, who’s obviously been instrumental in joining us together, and she’s done that a lot for quite a few other people. But she also says, which I feel as well, very sad for two reasons. Firstly, if I’d not had my ear pierced we’d never have met. And you’re only 27, so would you have carried on for 20 years before you reached the average age of the perimenopause, you know, into your 40s? And how would your life have been? [00:18:34][32.1]

Elin: [00:18:34] Yeah, because I would just never have even heard your name. My GP was, although they did what they could have done, they weren’t taking it as seriously as you did. So yeah, I think I’d still be going. [00:18:46][12.0]

Dr Louise: [00:18:47] So yeah and so your individual life would have been affected, but there are still lots of people out there who are affected. And, you know, we can’t reach everybody through our clinic. And globally there’s a lot of people who are really struggling, and there are people in other countries where it’s less easy to talk about the symptoms and they end up not talking about them because they’ll be judged incorrectly and seen as a failure as a woman, which I find really sad. But I know that if I’d met you ten years ago, before I started my menopause clinic and doing as much work as I do, I would have been the same as your GP. I would not have known what to do because no one taught me about menopause. But more importantly, no one really taught me about testosterone and how important it is throughout our body. And even now the guidelines are, you start HRT, you add in testosterone later if people have reduced sexual desire. But actually testosterone is a biologically active hormone that goes throughout our body, affects every single cell. And increasingly we learn through patients. That’s often what we do in medicine anyway. But we learn that stamina improves, strength of muscles improve because we have testosterone receptors in our muscles, in our bones, and even in our joints. But also energy and sleep improve, which are really important to help us function. That mood, motivation can improve, and also urinary symptoms often improve with testosterone in addition to oestrogen and testosterone’s very anti-inflammatory as well. It reduces inflammation. So there’s lots of reasons why it can help. But no one’s really done any research properly in women looking at testosterone deficiency on its own. You know, you’re still having periods, you’re still producing some oestrogen and progesterone, probably less than you would have done compared to other 27 year olds. But actually, for you, a lot of it was the testosterone that was really low. And we don’t know why some women have lower testosterone sooner than others. And that’s something that is really important because it’s an independent hormone, if you like, that is crucially important for many people, but they’re not, it’s not being diagnosed, it’s not been recognised and then the people are not having the treatment. So, you’ve been discharged from your urologist, haven’t you? Which is great. [00:21:11][143.5]

Elin: [00:21:11] I have, I thought that wouldn’t, I’d never see the day. [00:21:14][2.3]

Dr Louise: [00:21:14] And what did your urologist say? Was he. Well, I’m saying he could be she, were they pleased? [00:21:19][4.3]

Elin: [00:21:20] There was a group of students there as well. We’d done my last cystoscopy, and we’d done my last I can’t remember what it was called… the amount of urine that you can hold and pass. [00:21:32][12.5]

Dr Louise: [00:21:32] Was it urodynamics? [00:21:32][0.0]

Elin: [00:21:34] Yeah. That’s the one. They were really shocked to see that I didn’t have a problem with my urodynamics. That’s what they’d had their money on from the start. Even though I’ve had all these tests a few years prior and no-one could find anything wrong. And they said, so what’s changed? You’ve gone eight months now without… What’s changed? And I gave them your name. I told them about your podcast. I explained about the hormone insufficiency and everything and they were just shocked. They were like, oh, we heard it could affect things. But again, not on someone so young. So it just felt a little bit like, well, I’m here and I’m telling you, and I’d already met so many other young people in the waiting areas in the past that I know haven’t had access to information yet. So again, I’m super happy for myself but then it does make me very angry that there are so many people without the knowledge that you’re spreading. [00:22:25][51.6]

Dr Louise: [00:22:28] It’s really important. And certainly my, I don’t know if you know, my husband is a urologist, and last year I lectured at the British Association of Urological Surgeons, and it was really great because they’re a very dynamic group of people, and they really wanted to learn. There’s a lot of sort of scepticism when I talk to some groups of doctors, but actually they see it already, they see that local oestrogen pessaries can make a real difference for some women with urinary tract infections, but they didn’t know about testosterone, and they don’t often give systemic hormones the same. But they’re really keen to learn. And I think that’s the most important thing in medicine. Certainly, I’ve always been taught to have a really open mind and try, you know, as long as something’s safe, like, I would never try, there’s lots of new drugs that come on all the time that I’m really cautious of starting a new drug if we don’t have data. Some people say we don’t have enough data about testosterone. But then if you look how it works physiologically in the body, you know our natural testosterone. And if people have good understanding of how it works in our body, then that’s very easy, because all I’m doing is giving testosterone. I’m not giving you a testosterone-like substance. There’s lots of, young men in various gyms that are taking testosterone analogues and having all sorts of problems because they’re like testosterone, they’ll help build their muscle, but they have problems as well. But I’m not doing any of that. So it’s quite simplistic medicine. But the problem is, is that no-one’s been taught. And then a lot of people say, well, we need to wait for the studies. Well, the studies won’t be done because there’s never or hardly ever any funding for female studies or studies involving women. But in the meantime, what I would hate to do is have said to you, well Elin, we haven’t got any studies, it might help you, but let’s wait for the studies to be done. Come back in 20 years’ time, because that’s not right and not fair, is it to have that approach, I don’t think? [00:24:23][115.4]

Elin: [00:24:24] I think I’d have cried. [00:24:24][0.3]

Dr Louise: [00:24:25] Yeah, yeah. So we’re hoping, testosterone at the moment is only licensed for women in Australia. It’s not licensed in other countries. And we’re not really sure why. I think it’s just because there’s so much misogyny really that goes on. And it’s never been a priority thinking about female hormones in the same way. There’s always a fear that people will abuse and use it wrongly, and I think that’s why it’s actually labelled as an anabolic steroid, because if you use too much, it can build your muscles too much. But actually, I’m not aware of any women that abuse a natural hormone. And they’re so relieved, like you are that you’re feeling better. But as long as it’s been given in the right way and people are monitored. So always in the clinic, we monitor everyone. Every year they have a blood test to make sure the levels within normal ranges and make sure they don’t have any systemic side effects. But very few people have side effects when it’s used in the right way, because you’re just topping up what’s missing, and your testosterone level is probably still lower than other people’s who are 27, and it might be higher than others. But it’s right for you. And everyone’s different. And so that’s the most important thing, is monitoring and making sure that you’re feeling better. And sometimes in medicine it’s very hard to measure feeling better. You know that you can do these studies looking at blood pressure or weight or, you know, sort of objective measurements. But feeling better can be quite hard to quantify. But just being able to increase your hours at work, to not fall asleep on the tube on the way home, to be able to go to the gym, to be able to sleep at night, in my mind are really good measurements that things are going in the right direction for you. [00:26:08][103.0]

Elin: [00:26:08] And there’s lots of other weird symptoms as well, like you’d have like weird reactions to certain things. I’ve not had that since starting and then weird nightmares, weird dreams and things, there’s so much more than just those little top ones that I feel like are really common for everyone. Just those little ones that affect your day-to-day life have all gone. And like you said, it’s such a tiny amount I’m using, when I actually put it on to my leg you think that’s not going do anything. It’s such a tiny amount and, like, such a big difference. [00:26:37][28.5]

Dr Louise: [00:26:37] Yeah. No. It’s amazing. It really is such a joy to listen to you and hear. And I’m really grateful for you sharing your story as well, because we all learn from other people’s stories. And obviously it’s not going to be as transformational for everybody. But certainly it’s something to consider for people who are having similar symptoms. So I’m very grateful. But before we end Elin, I always end with three take-home tips in the end of my podcast so people can just reflect a bit more. So I’m really thinking about younger audiences, you know, people like you who are in their 20s. What are the three things that you would say to women, girls, you know, who are in their teens and 20s, who think they might have some hormonal changes, but they’re either not being listened to or they’re too scared to go and ask for help. [00:27:25][47.3]

Elin: [00:27:26] The top one thing is it’s really hard at times, but just don’t stop advocating for yourself. There are times where you do have a lot of self-doubt, and you do feel like you’re battling yourself. You feel like you’re wrong but you’re not. Keep pushing. My doctor was sick of seeing me, I was there probably every week. Just don’t give up on that side. And I found what was really helpful to finally get the blood tests on the NHS or to start that discussion with a doctor that actually listened to me was to not just list your symptoms but list when they were happening as well. So having a almost like a log of what happened on what days, just to make sure everything they want to quickly rule out so they’re not ruling it out. So for example, if you’ve not eaten very well for that day, you’ll know if it’s affected by food or if it is affected by hormones and things like that. So if they say, you need to eat better you can say no, I’ve eaten really well this week. I think the other one will be, don’t be scared to try medications. Don’t be scared to take suggestions. And whether it’s to just see if it helps or whether it is just to keep the doctor happy to potentially to get to the next step. So if it is potentially try some hormonal contraception and see if that helps. Or try the local HRT because I’m shocked at how much that helped. I thought that would be completely wasted when we discussed it, I was like, I’m happy to try it, but I don’t know how that’s going to help and if I hadn’t have felt it and hadn’t have done it, i wouldn’t have believed you that was such a big difference it made for me. So just don’t be scared to try things as well. [00:29:05][99.5]

Dr Louise: [00:29:06] Brilliant. Great advice and thank you so much for your time tonight because it’s late at night, you’ve had a long day at work, and I hoicked you in to do this, because I just felt your story is so important to share with others, and I’m sure it will resonate either to people directly or people who have children or know people who are young. So thanks again Elin for your time. It’s been great. [00:29:28][22.1]

Elin: [00:29:29] Thank you for having me. [00:29:30][0.8]

Dr Louise: [00:29:35] You can find out more about Newson Health Group by visiting www.newsonhealth.co.uk. And you can download the free balance app on the App Store or Google Play. [00:29:35][0.0]

ENDS

The post I’m 27 and perimenopausal: how testosterone helped my symptoms appeared first on Balance Menopause & Hormones.

How do you work out what the right dose of HRT is for you and balance the benefits with any potential risks?

In this episode, Dr Louise talks about HRT doses with Corinna Bordoli, who began experiencing menopausal symptoms when she was just 10 years old.

Corinna shares her experience of premature ovarian insufficiency (POI) – menopause before the age of 40 – and of the challenges she faced in getting a prescription for a higher dose of estrogen to help both her symptoms and future health.

Dr Louise and Corinna discuss why hormone needs and absorption can vary from woman to woman, particularly for those with POI.

Corinna’s three tips for those who may suspect they have POI: 

1. Keep track of your perimenopausal and menopausal symptoms so that you have evidence when you go to see your doctor.

2. If you are diagnosed with POI, make sure you seek out a specialist in the condition to get the best care.

3. If you have POI, find a community of other people with similar experiences for support, such as through the Daisy Network. Sharing your story and hearing other people’s stories can make a huge difference and be healing.

 Find out more about the charity the Daisy Network mentioned in the podcast here, or on Twitter  @thedaisynet.

Transcript

Dr Louise Newson: [00:00:09] Hello, I’m Dr Louise Newson and welcome to my podcast. I’m a GP and menopause specialist and I run the Newson Health Menopause and Wellbeing Centre here in Stratford-upon-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. Today on the podcast, we’re going to talk about people who are neglected when it comes to the menopause. There’s lots of people who are neglected, but the group of women that I really worry about, the people that actually do keep me awake at night, are young women who are really often not listened to, not believed, and often not diagnosed as having an early menopause. And when I was at medical school, I was taught, if a woman doesn’t have her periods, Louise, just make sure she’s not pregnant. And if she’s not pregnant, you can reassure her. And obviously, thankfully I’ve learnt a lot and that was completely wrong advice. So very delighted to introduce Corinna to the podcast who is going to share her story and also some of the work she’s doing to help other young women. So welcome today.

Corinna Bordoli: [00:01:27] Thank you, Louise. Thank you so much for having me.

Dr Louise Newson: [00:01:30] That’s fine. Do you mind just saying how old you are?

Corinna Bordoli: [00:01:32] Yes, I’m 27 years old. And shall I also say when I started having symptoms? Yes, I was ten years old.

Dr Louise Newson: [00:01:39] Ten years old. So we’ll talk about that. But if I Google menopause, I don’t think I’ve ever found a 27-year-old or a ten-year-old or a teenager. It’s usually people with grey hair, actually. So even me as a 52-year-old do not identify myself with the people that are portrayed often as menopause. It’s always someone with a fan, isn’t it? With their head in their hands with a fan, usually grey haired, obviously white, usually Caucasian women. It’s just so wrong. And actually when I’ve been talking to people recently with some of the book festival tours that I’ve gone on and I’ve said to people, no one’s too young. And one of my youngest patients was 14 when she was diagnosed. I can actually hear the audience go [sharp intake of breath] as if, oh my goodness, that’s really…and it’s not actually, it’s something that we need to think about more and we really need to be aware not just necessarily for ourselves, but for our children or our children’s friends or relatives or people we work with as well. Because there’s also this whole midlife conversation, which must really wind you up as well, because it’s not, even as a 52-year-old menopausal, I might not live till I’m 104. So I don’t think I’m in my midlife either. You know, there’s lots of words that must really wind you up. So just before we talk about that, just tell me a bit more. So you were ten, so 17 years ago at ten, you’re you know, that age, people are starting to develop a little bit sometimes. Not always, my three daughters have been quite late developers, so, you know, it’s not unusual is it at ten to not be starting your periods. But then what happened?

Corinna Bordoli: [00:03:23] Yes, actually, I felt like I was starting to develop in some bits and then eventually that stopped. And so I was very aware of it. I knew that there was something wrong with my body and I was going through lots of various things. So I was a child singer. And then very quickly my voice started drying up. Basically, I’m just developing some singers’ problems like nodules, which normally go away, like with a little bit of voice therapy and they just were not going away. And then I kept getting injured. When I was doing sports, I was literally on crutches like three times a year for six years. And again, every time I went to A&E or a specialist, they would just say, well, just give it time. You know, you’re growing really tall and, you know, this is the time where your body is changing. So just, you know, just be patient and give it time. I also had heart palpitations at night. I couldn’t sleep. I had a lot of anxiety. Again, I went to different specialists for each and every one of these issues, and I was just told I was fine, but I knew I wasn’t fine. And I also knew that all of these things were connected to the fact that I wasn’t having my period yet. And I kept telling my GP and just getting this message, well, let’s wait one more year before we investigate this.

Dr Louise Newson: [00:04:39] So you sensed that there was something not right? But you still you didn’t know how to get the right help.

Corinna Bordoli: [00:04:45] Yeah. Yeah. I think very often, like you’ll know within your body if there’s something that’s wrong. But it was years and years of being told that actually, no, there wasn’t anything that was wrong that really obviously impacted how I felt about myself as well.

Dr Louise Newson: [00:05:00] And then what happened?

Corinna Bordoli: [00:05:01] So finally, at 15 and a half probably, so I was almost 16 years old. My GP gives me a referral to a paediatric endocrinologist to check my hormones, basically. And so I went to the best clinic in Italy there is, and I was basically told my ovaries didn’t work and I couldn’t have children, but I wasn’t really told this was the same as the menopause and it wasn’t really explained what this was going to be like. So I was just put on the birth control pill and yeah, just told to just take this once a day for the rest of your life. You’ll be fine.

Dr Louise Newson: [00:05:36] And did that make any difference being on the contraceptive pill?

Corinna Bordoli: [00:05:39] So it gave me a bleed. So I developed in some ways, although my breasts did not, almost didn’t develop at all, so I don’t think I developed properly. I did feel good about having a period finally or something like that, so at least I felt a little bit more normal. But my symptoms very much continued. And yeah, that’s a little bit unfortunate because had I known back then that that wasn’t the best treatment. I would have definitely chosen the best treatment to feel better.

Dr Louise Newson: [00:06:08] Yeah. And that’s really important, isn’t it? Because the contraceptive pill for those of you listening, usually is a combination contraceptive pill we’re talking about here. So it contains estrogen and progesterone, two of the hormones that obviously are low when people are menopausal, but they’re both synthetic. So it means that they’ve just been chemically altered so that the estrogen isn’t quite the same as the pure estrodial in our body, the progesterone – there’s lots of different types of synthetic progestogens, but they’ve all been chemically altered, so they don’t fit the receptors beautifully like the natural hormones do, and they are different doses as well. But when we’re younger we produce different amounts of hormones to when we are older, of course, as well. But this is a fixed dose combination pill and some of the guidelines for women with POI, premature ovarian insufficiency, do state we can consider HRT, so hormone replacement, or the combined contraceptive pill. The other hormone that obviously isn’t acknowledged when people have the combined oral contraceptive pill is testosterone and actually having oral estrogen can increase something called the sex hormone binding globulin, which actually reduces freely available testosterone. So if women do have some testosterone in their body, then taking the contraceptive pill will lower that anyway, for a lot of women they don’t really notice. But even women without POI who take the contraceptive pill can notice that they have reduced libido, feel a bit more fed up, a bit flatter in their mood, a bit less energy. And that often can be because there’s less effective testosterone in the body. But if your ovaries weren’t working, we know then that your estrogen, progesterone and testosterone are likely to be low, aren’t they? So taking the combined oral contraceptive pill for some people is fine, but if it’s not helping your symptoms, then it’s not good enough, is it? So. So what did you do?

Corinna Bordoli: [00:08:02] Yeah. So the thing is, I obviously didn’t know what it was like to feel normal, and so I just accepted, I guess, that was me. So I thought I was a very anxious person. I had lots of mood swings. I was also on one of those pills that give you a week’s break. So for a whole week I was, my mood was really, really low and I was suicidal. It was really, really difficult. But also I wasn’t back to sort of my old self, I guess, although obviously my old self was a child self. So it was really difficult to know if that was just normal or not. But I also kept getting injured again, a bit less than I did without anything before my diagnosis. But still I broke my foot by doing pilates when I was 20 by literally just going onto my tiptoes. And since then that’s gone into necrosis and all sorts. And you know, I was very young and it’s just a little bit, you know, unfair that again, that happened. And I just wasn’t aware, you know, I just assume my body just doesn’t work, really.

Dr Louise Newson: [00:09:01] Yeah. And that’s so important obviously a lot of the work that I do is about allowing women to have education. But when we look at premature ovarian insufficiency, POI, or what it’s defined as, it actually means women under the age of 40, as you know, and we’ve always quoted it’s one in a hundred women. A recent study said it’s probably three in 100 women. Women living with HIV, it’s actually more like 20% of women. And I think globally that the percentage is actually quite a bit higher. I don’t know what you think, out of your reading?

Corinna Bordoli: [00:09:34] Yeah. I mean, it sounds like it’s a lot more, it sounds like it takes years and years for people to actually get diagnosed. And lots of them never actually get diagnosed cause they’re on the pill or there’s some other reasons and maybe they just realise they have POI just before they’re actually menopausal. So yeah, to be honest, it’s really, really scary to just speak to other people who’ve lived decades and decades like me. And so they’re just trying to figure out if that’s them, if that’s their hormones, and they just have no sort of baseline. They can’t just be like, well, two years ago I felt really good and now I don’t feel good anymore now. It’s the whole of their lives they’ve led.

Dr Louise Newson: [00:10:12] Yeah, and that is a problem because it’s also we talk about the menopause, but there’s also the perimenopause. So for a lot of women whose ovaries just naturally fail earlier or don’t work as efficiently, then they might still have periods. And so then it’s very difficult, isn’t it, to know? But we know I’ve read some studies that say that it takes seven years for women to be made the diagnosis and that they see at least seven doctors as well. And they would have seen doctors like me 20 years ago saying, oh, if you’re not pregnant, don’t worry. And, you know, you’re probably a bit stressed. That’s why you’re feeling anxious or, you know, there’s something else going on, which is awful or given the contraceptive pill. But if you have a week off, a week pill free, that means a quarter of your time is without hormones. And then the other thing, it’s not just about symptoms. Clearly, it’s outrageous that women are being ignored when they have so many symptoms. But even if we put that aside and there’s some evidence that women with POI don’t have the same classical symptoms as older women or they present sometimes differently, every single woman with an early menopause, whatever the cause, has health risks associated with it. And that’s something that’s really important, isn’t it, for people to know from the outset.

Corinna Bordoli: [00:11:29] Yeah. I mean, I was told, luckily to do my DEXA scan every few years, and that’s obviously like one of the main issues, I guess, you know, check your bone density, but also heart and brain function. And I think that is something that maybe there isn’t just one easy way to sort of check or check hormone levels are fine. But I guess, you know, immediately when I went onto HRT, like the way I also felt more, I guess, I’m not clever, that doesn’t sound right, but less brain fatigued really, really changed. And yeah, just generally, you know, I felt better as a whole, as a whole human as opposed to just, you know, being able to get out of bed, that was an achievement.

Dr Louise Newson: [00:12:14] Yeah, which is amazing. So if you don’t mind saying you’re taking HRT now rather than the contraceptive pill. And how are you taking the HRT? Are you taking the hormones separately?

Corinna Bordoli: [00:12:24] Yes, I’m taking the patches for my estrogen and I’m on a 200 dosage at the moment, which again the NHS isn’t particularly happy about and they’d rather me be on a lower one. I then take my progesterone as a sort of 12 day cycle. So I still have a bleed and I was on the Utrogestan which is the body identical one, but for shortages. Now I’m back on the synthetic one for a while and I’m also on testosterone. So it’s a gel and I put half a pea sized lump on every day.

Dr Louise Newson: [00:12:56] And do you think the testosterone has made much difference to you at all?

Corinna Bordoli: [00:12:59] 100%. I literally felt it the day I started it. Like I had absolutely no doubt. So energy levels just in general, how it’s like helped my body just grow stronger. I don’t have, like, massive muscles, but I was really, really, really skinny and I was exercising quite a lot and not really feeling the benefits. I always liked exercising, so I still did it. But absolutely did nothing. Well, now, since I’m on testosterone, I actually feel like I can feel stronger and that’s incredible for my joints as well. I have a lot less joint pain because I can exercise it actually, and it’s doing something to my body, but also brain fog. And energy levels, it’s been incredible. If one day I forget to take it, then I know immediately that I’ve forgotten to take it because my brain’s less functioning, really. I just forget things and I’m just a lot slower.

Dr Louise Newson: [00:13:51] Which is so important. So there’s a couple of things I’d really like to explore, if you don’t mind. One of the things is you’re saying you’re on 200 micrograms of Evorel or estrogen patches, so the patches we use to apply to the skin to allow the estrogen, the body identical, the natural hormone to go through the skin into the bloodstream. And when we talk about maximum doses of drugs, it’s often what the drug company have defined due to the way that they’ve done the trials and got the drug licensed. Actually in the British National Formulary, the BNF that we work out of as doctors, it says that we titrate the dose according to symptoms and they don’t define a maximum dose. The SPC, so the product characteristics with the drug company will say the maximum is 100 micrograms when it comes to patches, but that’s not based on risk, it’s just based that they haven’t done the studies. In other countries they don’t have the maximum in the same way. So prescribing a higher dose is off label use, but it’s not off licence use and sometimes with painkillers we’ll give higher doses, sometimes with other hormones such as thyroxine, there isn’t a maximum dose on the SPC. So I’ve had some patients who are on 225 micrograms of thyroxine and others who are on 25 micrograms and everyone’s different. But when we apply things on medication on the skin, our skin types are very different. And so we know from other studies looking at all sorts of drugs through the skin is that the absorption can be very unreliable and unpredictable. It could depend on the thickness of the skin, the temperature of the skin, the vasculature of the skin, but also the adhesive that’s used. So some people find that the patches don’t stick on very well. And I use more than one patch, but they just don’t stick very well. They crinkle a bit. So having more than one just means that I’ll just get a bit more absorbed. But it’s probably not as much as one patch in another person’s skin that sticks really well. So there’s lots of this going on. But at the same time, we’ve recently, as you know, there’s been a news alert from the British Menopause Society, the Royal College of Obstetrics and Gynaecology, the Royal College of GPs, the Royal College of Nursing, saying that we shouldn’t be prescribing more than 100 micrograms. And if people do, then they have to take it at their own risk and have the responsibility as a prescriber. Well, a lot of people are scared of HRT anyway, due to unfounded fears. So this is making them really scared. And there is evidence and it is mentioned in some of the guidelines as well, the ESHRE guidelines for POI, that younger women often or might need higher doses. So you’re saying you can’t get a higher dose on the NHS? So it just doesn’t seem right. I don’t really understand what the concern is. What have you been told that are the concerns of having 200 micrograms?

Corinna Bordoli: [00:16:37] So I’ve been told there’s just no evidence that that will be safe in the long term, which is the same as there’s no evidence that I’ll be fine on a smaller dose. And the thing is, I know that I’m not well if I’m on a much lower dose. So when I switched from the pill to HRT, I was put on a 50 microgram patch for quite a while and I was really, really unwell, I was feeling better mentally, but physically I actually had all sorts of symptoms. Like really, I really struggled. So anything from headaches, like feeling, you know, completely not able to function because I was so tired, but also a lot of sort of intestinal problems. I always had IBS and when my estrogen is very, very low, I literally don’t keep anything down. So I was losing a lot of weight and being referred to all sorts of specialists to check that my, you know, I didn’t have some sort of cancer in my digestive system somewhere. So, you know, obviously this costs a lot of money to the NHS as well. It obviously worried everyone because I couldn’t keep any food down. But then as soon as my estrogen was up like this completely disappeared and again, they couldn’t find anything else. And I knew it, as we kept sort of increasing it every three to four months, finally getting up to a higher dose that I was feeling better. But on 100 dose, I still was not feeling good. And I think everyone just needs a different dose and they will know within their body if they’re well or not. And I still have lots of symptoms on the 200 one to be honest. So I think until probably you feel good, you can probably still up the dose? I’m not sure. What would you say?

Dr Louise Newson: [00:18:21] Yeah, well the thing is about estrogen is it’s very anti-inflammatory in the body, it’s very beneficial. And often when people are on HRT, we do do blood tests to see if the estrogen is being absorbed, if the level is low and a woman is on a certain dose, then we do often increase. There are some women that still have high levels, but they actually still feel better when they increase. But then you repeat the level and it can be low again. And so if you do blood tests in the perimenopause, hormones can fluctuate so they can be very high and they can be very low. So sometimes a high reading is just because you’ve taken it at a time when the hormone is sort of fluctuated up. The other thing is there is some cross-reactivity with the hormone blood test. So if some people have certain supplements, such as biotin, it can cross react with the blood test. So you get a falsely high reading. In medicine, I’ve been always taught and I always practice, in that we have to look at the patient first and the blood tests or the scans or whatever can help us with the diagnosis. But we can’t just be looking at the blood test the whole time. And this is, I think, very important when it comes to hormone levels, because everyone’s different. And what you need as a 27-year-old of estrogen in your body is bound to be different to me, who’s you know, nearly twice your age. I probably don’t need as much in my body. And when I’m another 20 years older, I probably won’t need as much as I have now. But we’re very clear with the guidelines that every year people need to be reviewed and assessed, looking at the benefits and the risks. Now, the theoretical risks of estrogen, if you have too much, is people worry about the lining of the womb. So in the old days, so decades ago people prescribed estrogen on its own, they didn’t think about progesterone and then they noticed that more women were having bleeding, some of these women had endometrial cancer. But when you actually look at the studies, the risk of endometrial cancer for women who only have estrogen is still very, very low. If you have progesterone as well, then you’re protecting the lining of the womb and you’re reducing that risk. Now, with risk, you can never say never. So you cannot say people who take HRT are never going to have endometrial cancer in the same way that saying people who take HRT are never going to fall down the stairs and trip over. You know, it doesn’t protect us from everything. Of course it doesn’t, because there’s a background risk of endometrial cancer. We know the commonest reasons or risk factors for endometrial cancer are being overweight, having type two diabetes, being hypertensive. So nothing to do with HRT. We do know that women who take HRT, especially when the progesterone’s continuous, are less likely to develop endometrial cancer, they are more likely to develop bleeding, but bleeding doesn’t usually mean endometrial cancer. So there’s lots of reasons why people bleed. And clearly you’re taking the progesterone for 12 days a month in a cyclical way. So you are going to have bleeding, which is absolutely normal. And because you’re shedding the lining of your womb. A 27 year old, very slim, very healthy lady, the risk of endometrial cancer is incredibly low. Even if you take 100 or 200 micrograms of estrogen because you’re replacing whether you’re actually giving yourself what you need, you know, your body or others who are 27 with normal periods probably are producing more estrogen than you’re having. But what’s happened with this news alert and everything else, people have put all women together in a box and saying, No, we can’t. We shouldn’t be giving more than 100 micrograms. They’re not thinking of this individualisation. They’re not thinking of certain groups of women that really benefit from higher doses. And it really worries me because women shouldn’t be paying for their HRT, especially as we’ve got free prescriptions now, not free but, you know, you just pay for one, don’t you, for the whole HRT. But actually, that’s not you’re not allowing to have your hormones back. I’m not aware of any studies showing that higher doses of antidepressants have long term benefits or don’t have risks. Those studies haven’t been done in the same ways that long term higher dose estrogen studies have never been done, but people don’t seem to worry about that. And I feel it’s a real disservice to women just saying, no, you can’t have it. The other thing, as you might know, we’ve produced and it’s available on the www.newsonhealth.co.uk website, it’s some audit data that we’ve done a service evaluation looking at our estradiol dosing, looking at our levels, looking at patterns of bleeding. And we’ve actually found there’s no correlation even between doses and levels in the body because some people absorb very well. Some people on lower doses have a higher level of estrogen in their body than others who are on a higher dose because they’re just not absorbing as much, which makes sense as bearing in mind, as I said, about skin type and absorption and everything else. But common sense and menopause just don’t seem to be united at the minute. It seems to be very fragmented, very polarised, with poor women in the middle not knowing who to believe, what to do. Do I trust that clinic who are giving me higher doses? Do I trust the Royal Colleges who are saying we can’t have more? Or do I trust my body that’s telling me that I don’t feel right? And that’s really hard, isn’t it, for individuals I think.

Corinna Bordoli: [00:23:42] It’s really difficult. And I think most people would just, you know, feel really, really scared to risk anything, you know, actively decide that, yes, I’m going to try and risk something. If a doctor has said, look, this is not proven, this is not sure, because obviously we’ve got already so many other health issues coming from other side. You don’t want to risk anything else. But obviously, if you understand like what this means and the reason for this risk being just, well, we don’t actually know if there is one then, that would help.

Dr Louise Newson: [00:24:15] Yes, absolutely. And I think with risk, it’s very difficult because as an individual, you want to know about you. You don’t want to know the percentage risk or one in whatever risk. I want to know for me the risk. But the other thing I always think about what are the risks of not having HRT or not having the right dose of HRT. We know if you don’t have enough and you have low estrogen, then you get this pro-inflammatory state in the body, which means that our immune system doesn’t work very well. There’s an increased risk of infections of course, but more importantly there’s an increased risk of inflammatory diseases. And we know that because the longer a woman is without her hormones, the greater the risk that the woman is of heart disease, osteoporosis, diabetes, dementia, mental health issues. Work by Walter Rocca from the Mayo Institute shows that other diseases such as chronic kidney disease, psychosis, drug addiction and autoimmune diseases, some types of cancer can all increase the longer a woman is without hormones. And that sounds horrendous. And I’m saying all that when you’re young, but that’s why it’s so important to have your hormones back, because if you have your hormones back, then that risk really does reduce. And the less time you have without your hormones, the better. So this long time for diagnosis is exposing women to an increased risk, and we don’t know how quickly it reverses or not. So it is is a real priority that young women who have an early menopause are really listened to and given treatment and the right dose and types for them as soon as possible, isn’t it?

Corinna Bordoli: [00:25:48] Yeah, 100%. And it’s about making sure that, I guess medical professionals are really listening to them, especially as a young, I was a child, I definitely was not listened to. And definitely, you know, my mum also wasn’t listened to. So there’s a lot to say. And, you know, possibly listening to the person whose body we’re sort of discussing. But you know, if you’re not feeling great because you’re going through POI or the menopause, then you probably are doubting yourself a lot as well. So maybe you’re not asserting yourself at the appointment.

Dr Louise Newson: [00:26:21] Absolutely. Yeah. So very important. So just before we finish, you do quite a lot of work with the charity the Daisy Network, don’t you? Can you just explain briefly what the Daisy Network is?

Corinna Bordoli: [00:26:31] Yeah, definitely. So the Daisy Network is a charity working with women with POI which is premature menopause. So it’s a community essentially. So there’s a lot of information and a lot of support for anyone that has been going through POI. So we do local meetups, so sometimes we meet in parks and do some walks. I meet the ladies in London, but there’s lots of different networks around the UK and internationally and there’s also support groups online and just a lot of information. So yeah, do join the Daisy Network. Yes, that’s helpful. Really, really helpful for me, for sure.

Dr Louise Newson: [00:27:05] Yeah. Brilliant. I think just it’s like anything, a problem shared is a problem halved, and just sharing with like-minded people who understand. You can talk, share experiences because I’ve learned a huge amount over the last seven years running a menopause clinic. I learn from my patients, I learn from the women, I learn from stories, and I learn from seeing people get better as well. But actually we learn from each other as well, and we can be advocates for each other, which I think is really important to patients. So before we finish, I’m very grateful for your time. I’d just like three take home tips, so three tips for people who have been listening who either think they might have an early menopause or perimenopause themselves, or they might be recognising it in others from our conversation. What three things do you think they should do as a priority to help them and their future health?

Corinna Bordoli: [00:27:54] Yes, the first one definitely listen to your body and yourself. Maybe keep track of your symptoms. If they’re changing, like balance, for example, is amazing at doing that, allowing you to really track your symptoms, but you can literally just journal whatever works just to make sure that when you go to your appointment, you can actually show evidence of how you’ve been feeling and don’t doubt yourself at an appointment. So really go to the appointment, prepare and ask for what you want, which is unfortunate that you have to do your own research and sometimes ask for things yourself. And the second one, do find a POI specialist if you are diagnosed with POI. Because actually they can prescribe you things like testosterone for example, a lot more easily than GPs, at least in my experience. And they should be able to help with slightly higher doses as well. We’ll see if that can still happen on the NHS at some point, that would be really good. And then the last one I would say yeah, definitely find your community and tribe. I felt so much more myself when I was able to share my story with other people and hear their stories. And I’ve made amazing friends and sometimes knowing people who are going through the same thing that you’re going through is the most healing thing that can happen to you.

Dr Louise Newson: [00:29:04] Absolutely. So very empowering, very positive. I really hope people now will look at the menopause as a problem for half the population, not a problem for older women, which is really important. So I’m very grateful for you sharing your story and look forward to hearing more about what the Daisy Network can do and what we can all do together to help young women. So thanks ever so much today, Corinna.

Corinna Bordoli: [00:29:28] Thank you, Louise. Thanks for the work you do.

Dr Louise Newson: [00:29:33] For more information about the perimenopause and menopause, please visit my website www.balance-menopause.com. Or you can download the free balance app, which is available to download from the App Store or from Google Play.

END

The post What is the right dose of HRT for you? Hormones and premature ovarian insufficiency   appeared first on Balance Menopause & Hormones.

Balance is delighted to have joined forces with Dimensions, an organisation which provides person-centred support and finds the right housing for adults with learning disabilities and autism, for a new easy read booklet all about the perimenopause and menopause.

The downloadable booklet, which has been published to coincide with Learning Disability Week 2023, covers symptoms, treatments and advice on exercise and nutrition.

The post Easy read guide to the perimenopause and menopause appeared first on Balance Menopause & Hormones.

• The average age of menopause in the UK is 51
• While menopause can’t be predicted, certain factors can influence when menopause happens, including genes
• Tips on talking to your family members about their menopause

The average age for menopause onset in the UK is fifty-one.

But it is exactly that – an average.

Menopause before 45 is known as an early menopause, while menopause before the age of 40 is known as premature ovarian insufficiency (POI). POI is a lot more common than most people think: it affects about 1 in 100 women under the age of 40, and 1 in 1,000 women under 30 [1]. Even girls in their teens can be perimenopausal or menopausal.

And while there is no definitive answer for when the menopause will happen for you, sometimes your genes, including when your mum went through her menopause, can give a good indication of when it may happen for you.

RELATED: Am I too young to be menopausal?

This family link has been explored in research over the decades. In 1995, a study looked at the likelihood of an early menopause in women with and without a family history of early menopause – defined as younger than forty-six for the purposes of the study.

Overall, 37.5% of the early menopause cases reported a family history of menopause before age forty-six years in a mother, sister, aunt or grandmother. Risk for early menopause associated with family history was greatest for those who had a sister who’d had an earlier menopause [2].

And it’s worth remembering that there are other factors that can influence when you go through menopause, including certain types of surgery, radiotherapy to the pelvic area and some types of chemotherapy drugs used to treat cancer.

In addition, women who have autoimmune diseases (where the body attacks its own cells) are more likely to have POI – for example, Addison’s disease, thyroid disease, diabetes and coeliac disease are all autoimmune diseases. Genetic conditions such as fragile X syndrome and Turner syndrome may also lead to POI, but this is very rare and, if it does occur, it is more likely in much younger women.

RELATED: Premature ovarian insufficiency (POI)

What’s the bottom line?

While there is no definitive way to predict when you go through the menopause, genes may play a part, so it worth asking female family members about their menopause.

You could ask questions such as:

• when did they become menopausal?
• what sort of symptoms did they experience?
• can they remember when other female family members became menopausal, such as their own mother, grandmother, sister or aunt?

References

1. The Daisy Network, ‘What is POI?’

2. Cramer, D. W., Xu, H., Harlow, B. L. (1995), ‘Family history as a predictor of early menopause’, Fertility and Sterility, 64(4), pp. 740–5, doi:10.1016/s0015-0282(16)57849-2

The post Will I have an early menopause like my mum? appeared first on Balance Menopause & Hormones.

It’s a common misconception that the menopause only happens to women in their 40s, 50s or beyond.

Let’s take a look behind the science behind this claim to get to the facts.

Can you be ‘too young’ to be menopausal? What does the evidence say?

In short, no.

The menopause is when your ovaries stop producing eggs and levels of hormones estrogen, progesterone and testosterone fall.

The average age of the menopause – that is, when you haven’t had a period in 12 months – is 51.

But 51 is exactly that, an average.

Menopause before 45 is known as an early menopause, while menopause before the age of 40 is known as premature ovarian insufficiency (POI).

POI is a lot more common than most people think: it affects about 1 in 100 women under the age of 40, and 1 in 1,000 women under 30 [1]. Even girls in their teens can be perimenopausal or menopausal.

RELATED: podcast: the challenges of accessing menopause treatment as a young woman

Why can menopause happen at an earlier age?

For most women with POI, the underlying cause is ‘idiopathic’, or unknown, but causes can include:

• having your ovaries removed during an operation (in which case the term premature surgical menopause is technically more accurate as there can be no return of ovarian function)
• radiotherapy to your pelvic area as a treatment for cancer, or if you have received certain types of chemotherapy drugs that treat cancer
• if you have had your womb (uterus) removed in an operation called a hysterectomy, even if your ovaries are not removed [2]
• an autoimmune disease, for example, type 1 diabetes, thyroid conditions or Addison’s disease
• genetic conditions, the most common of which is Turner syndrome, in which one of the female sex chromosomes (the X chromosome) is missing.

What’s the bottom line?

The menopause can happen at an early age.

If you notice any changes to your periods, or other symptoms you may think are related to the perimenopause or menopause, make an appointment to see a healthcare professional (you can use the balance app to track any symptoms). Your pathway to a diagnosis may differ from older women, and involve blood tests and other investigations to rule out other causes. You can find out more in this booklet Menopause and Me: a Guide for Younger Women.

References

1. The Daisy Network, ‘What is POI?’, www.daisynetwork.org/about-poi/what-is-poi
2. Moorman P.G., Myers E.R., Schildkraut J.M., Iversen E.S., Wang F., Warren N. (2011), ‘Effect of hysterectomy with ovarian preservation on ovarian function’, Obstetrics and Gynecology, 118 (6) pp.1271-79. doi: 10.1097/AOG.0b013e318236fd12

The post Am I too young to be menopausal? appeared first on Balance Menopause & Hormones.

“A decade ago, I’d just hit my 30s and life was pretty good – but there was one problem. I was unbearably tired and falling asleep on the sofa at 6pm every evening because it was impossible to fight the overwhelming fatigue. I also started getting migraines like clockwork every month.

At first I put this down to my stressful job. I was working in international events and having a busy time working on lots of different projects and travelling across time zones. As I was single, with very little time for a relationship, I decided to take a break from the pill to see if that would stop the migraines. But three months later I felt even worse – I was absolutely exhausted, had started having hot flushes, and hadn’t had a period since I stopped taking the pill. In hindsight, it’s clear that the pill had been compensating for my lack of hormones.

I made an appointment to see my GP, who was sure that it was nothing to worry about. But he explained that in rare cases it could mean that I was experiencing an early menopause, so he ordered some tests just to be sure. He assured me that this was very unusual, so I wasn’t especially worried.

So I was shocked when my results came in: my thyroid levels were in serious decline and my levels of estrogen and follicle stimulating hormone (FSH) weren’t what they should be. I was prescribed thyroxine immediately, which I’ll need to take for the rest of my life, and referred to an endocrinologist (hormone specialist) and gynaecologist for further investigation.

I’d always assumed that having my first ultrasound scan would be a magical moment where I’d get to see my baby for the first time, while a supportive partner held my hand. Instead, I found myself scared and alone in a hospital waiting room, surrounded by expectant mothers, waiting to find out what was wrong.

Then, after lots of poking and prodding, I was diagnosed with POI, basically an early menopause. I sat in the gynaecologist’s office in absolute disbelief, feeling my heart break with every word she spoke. It hit me that the future I had planned was crumbling into oblivion, and she handed me a box of tissues as the tears started to flow.

POI and infertility are often considered to be part and parcel of the same condition, but that’s not necessarily the case. Some people with POI may still have irregular or infrequent periods and may even be able to conceive. But, in some cases – like mine – POI can lead to periods stopping altogether and results in infertility.

After my diagnosis I just wanted to hide away. Dealing with the emotional fallout was so much harder than fixing the physical symptoms. But, after about six months, I decided that it was time to investigate my options. A doctor explained that the only way for me to carry a baby to full term would be through egg donation. This would need to be privately funded, as the NHS doesn’t offer this treatment to single people.

I investigated IVF privately, but with costs of around £10,000 it was out of my reach. So I decided to concentrate on work and put aside any thoughts of having a family of my own. As a result, I started to push people away. I had started dating again but I struggled with how to explain my diagnosis to a potential partner. And whenever I was invited to a baby shower, christening or a child’s birthday party, I’d come away feeling sad and deflated.

Finally, two years after my diagnosis, I accepted that I really wanted to be a mum – even more than I wanted to be someone’s wife or girlfriend. That’s when I decided to look at other options. For me, adoption was the obvious choice, and I made the terrifying decision to adopt as a single parent. Going through the adoption process alone was isolating at times, but I had an amazing support network, and I met some incredible people who were going through the same process.

After going in front of a panel, I was finally approved as an adopter but it took five more months, and two failed matches, before I was united with a six-month-old baby – my son. He came home with me a month later, and six months after that we officially became a family in the eyes of the courts.

It’s now almost 10 years since my diagnosis of POI, and I’m mum to a bright an active son who I believe I was destined to have in my life. My journey to motherhood wasn’t easy or conventional, but it gave me the strength I needed to become the woman I am today. Some people talk about menopause being the end of a chapter – but for me it was just the beginning.”

Read more about POI.

Would you like to share your experience of perimenopause or menopause? Write to us at shareyourstory@balance-app.com

The post My story: POI & having a family appeared first on Balance Menopause & Hormones.

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:

1.  Advocate for yourself, even though its frustrating and exhausting
2.  Remember self-care and your own health come first
3.  Don’t underestimate the impact of hormones on your physical and mental health

For more about the Blossom Living with POI / EM Journal:

Connect with Ava on social media:

Instagram & TikTok: @avavanderstarren

Twitter: @AVAnderstarren

YouTube & Facebook: Ava Vanderstarren

Ava’s professional website

Ava’s charity working with child soldiers in Sierra Leone

Episode Transcript

Dr Louise Newson [00:00:09] Hello. I’m Dr. Louise Newson. And welcome to my podcast. I’m a GP and menopause specialist and I run the Newson Health Menopause and Wellbeing Centre here in Stratford upon 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.

Dr Louise Newson [00:00:46] 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 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 out with middle age or older women. And Ava certainly isn’t so, welcome Ava. Thanks for coming today.

Ava Vanderstarren [00:01:26] Thank you so much for having me. Dr Louise Newson. Nice to meet you.

Dr Louise Newson [00:01:31] Aw and you! So just tell everyone, do you mind, how old you are?

Ava Vanderstarren [00:01:34] Yes. So I’m currently 29.

Dr Louise Newson [00:01:36] 29, OK.

Ava Vanderstarren [00:01:38] But I was diagnosed a lot earlier, which we can get into.

Dr Louise Newson [00:01:42] Yeah. So how old were you when you were diagnosed?

Ava Vanderstarren [00:01:44] So I was diagnosed with POI, or a 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 irregular. 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. Is everything OK? Checking. I was always going with my mom at the time I was in high school wanting to see, is everything alright? Is this normal? And yeah, the doctor would 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 the point where I didn’t have my 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 offered my first visit from the bloodwork. They diagnosed me and they called it ‘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.

Dr Louise Newson [00:03:05] And what did you think when you were told, did you know anything about menopause?

Ava Vanderstarren [00:03:09] I 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. 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 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, 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 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.

Dr Louise Newson [00:05:18] Hmm. And so do they know why it happened?

Ava Vanderstarren [00:05:22] No, I got a lot of testing, but it was still they say idiopathic. So still not quite 100% sure why, yeah.

Dr Louise Newson [00:05:29] 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 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 an 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 in your family had an early menopause.

Ava Vanderstarren [00:06:01] No, not that I’m aware of 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 other diagnosis, if that makes sense. So I’ve always kind of wondered, like, how that can be impacting it as well.

Dr Louise Newson [00:06:23] Yeah. So auto immune just means that your body is building antibodies to yourself, really. And so there are quite common autoimmune diseases, such as hypothyroidism – or diabetes is thought to be an autoimmune disease – rheumatoid arthritis, even coeliac disease as well. So often, people who have an early 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.

Ava Vanderstarren [00:07:08] For sure.

Dr Louise Newson [00:07:09] So the good thing is, I suppose, is that they did get on to 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?

Ava Vanderstarren [00:08:00] It is, yeah. So I also was such an ‘A’ student. You know, I have always wondered how much stress has played into it and 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 with premature ovarian failure. It was, yeah, it’s horrible.

Dr Louise Newson [00:08:24] 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.

Ava Vanderstarren [00:08:48] Yeah.

Dr Louise Newson [00:08:49] Just that whole thing. And actually, the ovaries often are insufficient rather than completely failed because it doesn’t mean for every person that they are going to be infertile, though it 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 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. Were you experiencing symptoms at all Ava?

Ava Vanderstarren [00:09:38] 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. So those are just the ones I can think of. There’s so many more.

Dr Louise Newson [00:10:19] 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 a 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 said, ‘Oh no, I wish I’d realised 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. And you know, our bodies don’t produce the same hormones every single day. That’s not how we work. We don’t use the same cortisol or the same adrenaline or the same thyroxine, and it’s the same with estrogen and testosterone as well. It will be slightly different, according to everything else that’s going on. So then it’s quite hard, isn’t it, when you’re given a fixed dose of HRT?

Ava Vanderstarren [00:11:48] 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.

Dr Louise Newson [00:11:57] Yeah. 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 a blood test 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 our blood test would be normal. And then at 03:00 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.

Ava Vanderstarren [00:12:31] 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.

Dr Louise Newson [00:13:03] 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’s 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. And 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 in 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 in her early 20s who had just been diagnosed with POI, she messaged. And she said, It’s 3:00 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?

Ava Vanderstarren [00:14:19] Yeah, yeah.

Dr Louise Newson [00:14:20] So but you have been reaching out and you have been getting a community of people, haven’t you? And I 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?

Ava Vanderstarren [00:14:39] 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. And 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/ early menopause’, and it’s a resource for women. There’s lots of prompt questions. There’s a place to record all of their information: so through their diagnosis, their doctors’ appointments, symptoms, their 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 just 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.

Dr Louise Newson [00:16:27] And it is, it’s really beautifully done for any of you who 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. But you didn’t know at the time, but some things aren’t a priority and you 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?

Ava Vanderstarren [00:17:14] Thank you so much. Yes. You know, the mental health aspect of it is so important because I think we forget 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.

Dr Louise Newson [00:17:48] And have you had any feedback about it?

Ava Vanderstarren [00:17:51] 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.

Dr Louise Newson [00:18:10] Which is brilliant because it’s not been 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 and I was going to see a doctor and I come out and I say, ‘Oh, I wish I’d asked this’ or that or whatever. And then 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 friend to hear. So you’ve got this there ready for you. It’s sort of your advocate as well, isn’t it? Really?

Ava Vanderstarren [00:19:35] Thank you. Yes. And I for myself right now, I’m using the appointment section because I have an appointment coming up in March. So writing down my questions and my main things 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.

Dr Louise Newson [00:19:51] 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. Are you going to be able to tell me that?

Ava Vanderstarren [00:20:03] 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 healtcare 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 HRT. And when I ask questions, knows what I’m talking about, you know, so that’s really amazing. But I definitely think that in Canada, we still have a lot of work to do with the medical system because 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.

Dr Louise Newson [00:21:02] And POI affects one in 100 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 that you don’t – shouldn’t all be experts. It should be basic medicine. Every single physician healthcare provider has some knowledge. But you also do work in other countries as well.

Ava Vanderstarren [00:21:31] Yes, yes, 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 centre there, which will have a water well, a medical clinic and education, skills training and therapy programmes 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 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 travelling; 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. 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.

Dr Louise Newson [00:22:57] 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 childbirth in the past. A lot of them have fistulas or injuries. Some of them have had cutting that’s happened. And a lot of these women, their symptoms will really worsen 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.

Ava Vanderstarren [00:23:38] Yeah, it’s a huge issue, and I really do hope that as things progressed, 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.

Dr Louise Newson [00:24:01] 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 that 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 ostracised 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?

Ava Vanderstarren [00:24:56] Yeah, it’s such a taboo subject to and even just becoming public about even going through infertility, whether or not it’s from POI or something else, it’s really difficult for women. Some women, I know personally as well, it’s very difficult to talk about because there is a big stigma, unfortunately.

Dr Louise Newson [00:25:16] So it’s trying to normalise the conversation actually is the most important thing because you know how you felt when you were first diagnosed and there’s a lot of people who haven’t got access to the internet or they don’t know how to talk to, and 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. We know there’s a mental health aspect of the menopause anyway, but even if they weren’t affected with the menopause, 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.

Ava Vanderstarren [00:26:01] I’m so happy that at least too with social media, there’s a bit more happening. 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 and more doctors. And I just continue doing what we can.

Dr Louise Newson [00:26:31] Absolutely. I do a lot of the time, I feel very negative. But every so often I have glimmers of thinking.

Ava Vanderstarren [00:26:38] No you’re being realistic though, it’s difficult, it can feel overwhelming.

Dr Louise Newson [00:26:41] 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 focused. 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.

Ava Vanderstarren [00:27:30] 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 can get the balance app, you know, that can be something that can be very helpful. So that’s really amazing and positive, too.

Dr Louise Newson [00:27:49] Yeah, absolutely. So you’ll have to come back and tell us how you’ve got on educating Sierra Leone because the charity work you’re doing is just incredible. I 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 realise 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 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.

Ava Vanderstarren [00:28:53] Yeah. So I 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 as 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 who can be supportive and need to work together with them. I think that’s very important. And then number two, self-care and health is 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.

Dr Louise Newson [00:29:54] 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 Ava.

Ava Vanderstarren [00:30:12] Thank you so much for having me today. It’s really nice talking with you.

Dr Louise Newson [00:30:18] For more information about the perimenopause and menopause, please visit my website balance-menopause.com or you can download the free balance app, which is available to download from the App Store or from Google Play.

END

The post Helping others feel less alone with POI with Ava Vanderstarren appeared first on Balance Menopause & Hormones.

In celebration of International Women’s Day 2022, we hosted an Instagram Live on our Instagram channel featuring balance app founder, Dr Louise Newson, and Corinna Bordoli.

Corinna has been involved in our #IamMenopausal campaign, sharing her experience of early menopause. We launched our campaign to highlight to the world that the menopause affects individual lives in every corner of the globe, all with their own unique story and experience.

In honour of the theme for International Women’s Day 2022, #BreakTheBias, we wanted to raise awareness of the biases of the menopause by giving Corinna a platform to share her story that goes against the stereotypes of the menopause.

Watch the live in our video above, or

The post Breaking the Bias of the Menopause for International Women’s Day 2022 appeared first on Balance Menopause & Hormones.

• It can be hard to distinguish between postnatal and perimenopausal symptoms
• The effect of HRT in breastmilk
• How vaginal hormones can treat a range of symptoms – postnatally and for perimenopause

It can be common for symptoms of perimenopause to start in your mid-to-late 30s or early 40s, when you may still be fertile and having periods. Many women therefore seek treatment – especially hormone replacement therapy (HRT) – well before the average age of menopause which, in the UK, is 51.

Increasing numbers of women are starting families later in life too, and may be relying on fertility support such as IVF to help with this. Phases of life don’t neatly stop and then another starts – there can be overlap between perimenopause and pregnancy. In addition, if you choose to breastfeed for more than a year, you may reach the point where you become perimenopausal or menopausal while you are still breastfeeding your baby.

RELATED: Fertility, pregnancy and perimenopause with Rhona and Tanya

Dr Wendy Jones, a pharmacist with a special interest in the safety of drugs in breastmilk, runs the website Breastfeeding and Medication. She says, ‘As many women now give birth later than in the past, due to changes in work and finance, and feed until they and their infant choose to stop, I have received a substantial increase in questions from mothers experiencing signs of early menopause.’

RELATED: Premature ovarian insufficiency (POI)

Breastfeeding during perimenopause

It can be difficult to access effective and safe treatment for your perimenopause or menopause if you have recently given birth or are breastfeeding. In addition, hormone levels drop after childbirth and during breastfeeding, which can result in symptoms that often mimic those experienced during perimenopause, such as hot flushes, headaches, or joint pains. The psychological symptoms of perimenopause and menopause, such as low mood, irritability and trouble sleeping, are also familiar features in the postnatal period.

RELATED: Fatigue and menopause: tips to boost energy

‘Medical understanding of perimenopausal symptoms can be poorly understood, and probably more so if the woman is breastfeeding as well, particularly outside of the perceived “normal” timeframe,’ says Dr Wendy Jones.

For this reason, it’s helpful to keep track of your periods (if you have them) and log all your symptoms on the balance app, in preparation for an appointment with your healthcare professional. This will help convey to your clinician the range of relevant information relating to your hormones, especially if you’re tired and might struggle to remember everything in the moment.

RELATED: A guide to period tracking

Taking HRT while breastfeeding

HRT often contains the hormones oestradiol, progesterone and testosterone. These are similar but have less risks and side effects than the hormones found in the combined oral contractive pill, which can be prescribed to women who are breastfeeding. HRT contains much lower amounts of these hormones, and body identical HRT (transdermal oestradiol, micronised progesterone and testosterone) mimic the natural hormones that your body produces. Although there are some studies that suggest the these hormones can pass into breastmilk, there is no evidence that this leads to any effects on the baby as they are the same as natural hormones.

Dr Wendy Jones says, ‘There remains no conclusive research on the passage of HRT medication into breastmilk but, anecdotally, HRT has been used by nursing women without impact on the infant or breastmilk supply.’

Dr Wendy Jones says, ‘If you take HRT when breastfeeding, there is a possibility of reduction in milk supply as the oestrogen content may inhibit the production of prolactin (the hormone that is responsible for the production of breastmilk). However, it appears anecdotally that there is less impact from using transdermal preparations, such as a gel, patch or spray, instead of taking oral HRT. The decision to take HRT should be that of the lactating mother, after discussion with her healthcare professional.’

RELATED: Oestrogen in patches, gels or sprays

Using vaginal hormones while breastfeeding

Local hormones (that are placed directly into the vagina) can be prescribed when breastfeeding, usually to help with the healing of stitches after childbirth, prolapses, or ongoing vaginal dryness. Breastfeeding can reduce natural vaginal lubrication for some women, so vaginal dryness can become a particular problem for those who are already in perimenopause.

Clinicians may prescribe vaginal hormones in the form of a pessary, cream, gel or silicone ring.

RELATED: Vaginal hormones: what you need to know

The post Breastfeeding and HRT appeared first on Balance Menopause & Hormones.