117 – Testosterone isn’t just for libido: what the data shows

0:00Today's podcast is about research, research into hormones that has been woefully neglected for far too long. So I have Aini, who's one of our very small but very wonderful research team, talking about the research we're doing, the research we're planning, the research we've published, and how exciting it is because it really is changing the future health of women. So enjoy this, listen, learn and share. so Amy this is really exciting that you're here in the podcast because you work remotely so we don't actually get much time together so you are one of our key research team we've there's a very lean team very small team but you know small is beautiful and it's phenomenal because you've worked with us for how many years now four four feels longer actually does it in a good way yeah good because we've done so much we have before I started here yeah we did quite a bit yeah yeah because you started you you're working with Dan Riesel who's amazing um gynecologist that we know who's done research with us too and he's a neuroscientist and what's your background just go through your background before we talk about what we've done together my undergrad was in neuroscience yeah um and I kind of did that degree because my mom was actually diagnosed with schizophrenia when i was about 15 16 and that as you can imagine turned our life upside down um but she got better thank god and uh yeah i can i think that kind of made me question a few things especially in our culture there's a huge thing we're attached to mental health anything yeah physical health as well um so i did my degree and i enjoyed it it was very researchy very very into their methodologies and and whatnot um and then when I graduated I was about to do a master's in clinical neuroscience because I'm somebody and I think you've realized this when I do work I love for it to have an impact or an outcome or make a difference yeah um so I wanted to take what I learned clinic uh in my neuroscience degree and apply it with patients and everything but there was something in me that kind of said you know you don't have to jump into it take a year out see if there's anything else out there so i took a gap year and in that gap year i was essentially exposed to how underfunded under researched women's health in general is and i was saying to before i went to all girls school for five years didn't hear the word menopause endometriosis back then it was pcos all these terms um i think the only thing we knew was breast cancer because it's the most common cancer in women and cervical cancer purely because of the HPV vaccination.

2:35So not about cancer, but not about hormones and metaphors. No, no, nothing. Nothing. And then thinking back as well, GCSE and A-level, you would learn the definition of a hormone, but you'd never actually learn anything more. So that inspired me to do a master's in women's health. And I really enjoyed that master's. It taught me so much from how social science works to the legality is an epic side of things. and then I knew for my dissertation I wanted to do something that wouldn't just sit in my bookshelf it would actually do something and that's when Dan he had a project which was to develop a digital decision aid for menopause care and I was like yeah that's down my street that's you know digital health within women's health that's great and we he's actually a neuroscientist by background as well so that was quite cool to be able to connect on that level as well and he's now training to be a gynecologist I believe um so to have somebody who's got a background in neuroscience but also women's health that's at that time anyway it wasn't common to see and it still isn't really it still isn't no I did that dissertation and as part of developing it we obviously needed a clinical steering group which was where you and a few other clinicians joined us um so having your feedback having your expertise your real world experience really transformed the project for us yeah um and then the charentop was that we were able to actually evaluate it so we sent it to over 250 doctors nurses pharmacists and they all came back saying this was really great you know you really break down how hrt works the benefits um and you kind of we used infographics to illustrate how it would help women.

4:17And yeah, we got a lot of good positive feedback from me. You got really good mark as well. I got 92%. Yeah, which is phenomenal. I was also awarded by the university, which I love to. It makes me proud. Yeah, well, you should be because there's a lot of work. And I remember when Dan first contacted me to show me and I then had to tell him the difference between bioidentical hormone treatments and synthetic. And initially he didn't really want to listen. and he won't mind me saying because it's true. And then what was good about Dan is that you can agree to disagree and then you move on, but then you carry it, go back.

4:52And then what I did with Dan is sent him more papers, sent him more evidence. And then he was like, why didn't I know this before? And what's been really great actually with time, and we all have, we've learned so much more that then when it makes sense as well, it just blows your mind, literally. and so so we've all been on a journey together really and um but what's been really interesting is i'm really interested in neuroscience i'm very interested in neuroanatomy neurophysiology neuropharmacology yeah and then when i realized a few years ago that the hormones get made in the brain i'm like i'm not even really well i am vaguely interested in the ovaries but the brain is the most amazing organ i mean it's an incredible organ and um when you understand that every single cell in the brain is responding to our hormones.

5:45It's incredible, but I presume you weren't taught that when you were doing your neuroscience degree. No, and actually in preparation for this podcast, I asked four of my friends from neuroscience. I got in touch with them and I asked, hey, just by any chance, if you remember, did we ever have a lecture on hormones during our degree? And they all said no. We may have touched upon it, but that was about it. And I remember I had one lecture because I chose a depression anxiety based module. And we were just talking about oxytocin in the brain. But that was it. Isn't it incredible? We talked about adrenaline, noradrenaline, but estrogen, testosterone, none of that was really ever related to us.

6:22And it's interesting because when I started to read, I've got quite an inquisitive mind. So once I started to understand about that hormones were produced in the brain and that every cell responds, I went back to really read some very basic text. but a lot of the papers were written in the 1980s and 90s so it's not like a new thing but I think sometimes everything and research is like that too it's very siloed isn't it and then if you don't put your research into clinical context it's just about getting a publication yeah and it gets forgotten about it goes lost in the pile yeah and I realized that years ago when I did my pathology degree I was looking at type 4 collagen so a type of collagen in the skin of people with systemic sclerosis, which is quite an unusual condition, mainly affects women.

7:06And I was very excited when I got a result with I was doing in situ hybridization and I wrote up the paper and it got accepted. And I was like, wow, I've got my first publication peer review journal. But then just before I finished my degree, I thought, you know what? I've never seen a patient with systemic sclerosis. So I thought, oh, I better go because I was still a medical student. so I hadn't had much exposure to patients. So I went to a clinic in Salford in Manchester and I sat in the clinic and they get very tightening of the skin and so a lot of, often children, sometimes they lose the ends of their fingers but they can't open their hands very easily and also around their mouth, couldn't open their mouth.

7:46So I was sitting in the clinic and these diseases were very extreme cases so not everyone with systemic sclerosis is like this but they couldn't pick up a fork and they couldn't feed themselves. So I'm thinking, almost guilty thinking, I'm really excited that I've got a paper about type 4 collagen and systemic growth of skin these people can't even function like how is my research really going to help them in their lifetime it won't so then I thought gosh if ever I do research in the future I've got to make it translational I've got to make it help because in academia often you get judged by how many publications you have and in university that's why where people go up the ladder isn't it with their publications and it's still a game you know people make money from the publications there's quite a lot of bias in what's published it's the more you see it it's not as transparent and without conflict as you might expect so then I thought well I only want to do research that's going to make a difference but I'm not an academic researcher.

8:51But it's really important when we have got so many patients and we're seeing these patterns happen that we're thinking, well, we want to share it with other people, don't we? We want to tell other people. But there's also quite a lot of antagonism in our work. And some people don't like the fact that we have a private clinic and they think that it's all placebo and that we're just using this to try and advertise our clinic. And that makes it really difficult when we're doing the research in the right way, doesn't it? Exactly. I know. And I think that's where collaborators with outside the clinic comes really useful.

9:30So we've been working with amazing people. Professor Kulkarni from Australia. She's a psychiatrist by background. Obviously, Dr. Mohit Kira and his team in America, up and down the UK as well we work with so many people and it's not just our data we're seeing it across well yeah absolutely and i think that's been it has been really great because because we're a small team we don't receive any funding from pharmaceutical companies or anyone else and um and sometimes in the clinic we've had really difficult times um where we haven't you know we haven't had much profit especially after panorama program things were really tight we had to lay off lots of doctors and the management people often would say to me, well, what about your research team?

10:13They're not making money for you, Louise. Why don't you? And I was like, no. It's so important to change the future for women. We're very privileged that we've got all this data, but actually we don't want to keep it to ourselves. And also for our own clinical experience and governance, we need to show that what we're doing is right. I need to be able to be reassured as a doctor that I'm getting good outcomes. and I'm being safe. So a lot of our research, if you like, we don't even always publish because we're looking internally. And then it's also really useful for others to analyse and look at our data in an anonymous way, because then no one's saying, oh, well, that's Aini did that data analysis, and she works in the clinic.

10:59Actually, it's Mo Kira's team, and they know nothing about what we do. And so then that makes it really powerful, doesn't it? Exactly, exactly. And we do it obviously in a safe way. absolutely but also everyone's got different skills and that's what's really useful as well isn't it so just to learn from other people how they how they work how they present how they write up papers because actually writing up a paper an academic paper it's not a quick process is it no it's hard it's hard but you're right actually working with different people different experiences and skill sets and even I mean both Professor Kolkhani and Dr Mo they both see patients but we don't and you see patients and other clinicians see patients that we work with and having that conversation with you to see that side of it and bring the data to life it's amazing it's amazing so you've been presenting actually I've um when was the first time you presented it was um when we were in Lisbon wasn't it in 2022 yeah 2022 so you came with us to a conference um it was the European menopause conference and we had quite a lot of abstracts and and data that we were presenting and I asked you to present and I remember you being a bit nervous but it was fantastic and you've also presented at the Royal College of GPs with Dan you presented your data as well didn't you and everyone's always really interested and then last year and and and this year you've presented at our Newson Education Conference, our in-house Newson Health Conference and what's been amazing is when you're presenting the work that we've done you could almost hear a pin drop.

12:36Everyone is so so interested but also so relieved that this is happening because no one else is doing it really. Yeah I love it towards the end of each conference we have a flood of clinicians saying absolutely love it but we have an idea for this project and that project and this person so having them involved and giving us ideas yeah and just it just gives us as a little team just motivation to keep going and it's really important but it also gives our clinicians motivation to record things properly in the notes because um for those who are listening don't know when we record things in the notes obviously we do it because we're clinicians but we have lots of tick boxes so it makes it easier but also a while ago um we made it so that people couldn't save their consultations unless their tick box is about side effects for testosterone.

13:24Because sometimes in a flow of a consultation, you might forget to ask something, or you might not ask the same question as another clinician. So we've made lots of sort of templates really, haven't we, with the help of the research team. So for example, we're writing up our data of thousands of people who have been on testosterone. And I have to, because I can't save otherwise it's quite frustrating to say have they had voice changes have they had hair growth have they had any side effects so then when you get that data you can anonymize it very easily because we don't need to go into the clinical letters we don't need to go into the nitty-gritty it's just that top bit yeah um but it also you know that there's not any sort of bias with recall or there's um you know clinician some clinicians will will do better note keeping than others everyone does the same yeah so but it's been great because when I when the doctors say oh why do we have to tick this box and I'm saying because of the research and then they see the research has been published then they're like wow this is so good yeah and that's really great isn't it it is it is because a lot of research teams I think often work in isolation don't they and you're just data machines or you're just writing up papers or or doing the analysis and it's been great having um olivia hendrix coming over who was the phd that we co-founded with liverpool john walls university so she started off doing her project didn't she with us and now she's working and i think for her to come from a university background where she hasn't had all that clinical exposure to come and see that the research is is what her research is because it's about suicide is literally saving lives as well.

15:06And then it was out on ITV. I know. It's phenomenal, isn't it? It's so phenomenal because I remember when I first met her and it was an idea that was being proposed and then I was obviously helping her with the methods side of it, getting the data and everything, and to now see her being able to publish paper after paper after paper. And to, I mean, I think the other day, the Prime Minister, Andy Barham, even acknowledged it. Which is phenomenal, isn't it? because basically this is one of the many papers that she's published, but it was showing that there's a 92 % reduction in suicide thoughts when women are on all three hormones.

15:44And one in six of our patients have suicidal thoughts when they come. And we know that suicide rate has increased in women in the late 40s. And so she did a lot of work looking at barriers to people getting help, barriers to receiving hormone treatments. She did a lot of research talking to patients as well, didn't she? But this paper that we have published in the British Journal of Psychiatry was really important. And when the journalist started to talk about it and then it went into the media and then Andy Burnham talking about we need to do more education. And it's been really good for external people to look at our published research.

16:26I mean, it's incredible, isn't it? It is. Yeah, yeah. I hope you're enjoying today's episode. If you'd like to hear more conversations like this, then please follow us or subscribe to the podcast on Spotify, Apple Podcasts, YouTube, or wherever you listen. By subscribing, you'll be the first to hear new episodes each week featuring expert guests, the latest research and evidence-based discussions about hormones and the health of women. Thank you for listening and being part of this really important community. But I think things are changing in academia because, you know, when I had my first paper published in 1992, a long time ago, it was all about the impact factor of the journal, which journal, you know, was it good enough, whatever.

17:15Whereas now, even when we have abstracts, which are, you know, shorter, they can be oral presentations or it might be a poster at a conference and we've had dozens of those actually the impact factor of that to others is huge because if you get it on through social media get it picked up in the media like some of our small data sets really made a difference that's so true and not just social media it's outside social media as well when you start talking about bringing up in person people yes there was a study that found xyz that itself starts sparks the conversation yeah absolutely because I was presenting at Ishwosh, which is a sexual health conference earlier this year.

17:55And I think we had, did they have eight abstracts? It was a lot. And they kept saying, Louise, it's your turn to go up. And you only have like five minutes or so. It's very, very short to present. And one of them was looking at FSH levels. And we see clinically they're not helpful, but the guidelines say that women under the age of 40, you should have your FSH level measured before you can diagnose. nose and I see a lot of women who have low fsh levels or it's normal but they definitely have hormonal symptoms and one of the reasons I wanted to do it was many years ago one of the first ladies I diagnosed with poi I saw her and she had two years of results and at the beginning two years before her fsh was high the gp didn't know what to do about it so she said oh come back and have your blood tested in three months time and then it was normal and then she had another normal one and another normal one.

18:45And then she had a high one. And then the GP said, no, I think you've had other normal ones. You definitely aren't menopausal. So she came to see me in the clinic. She'd given up her job as a psychotherapist. She stopped walking her dog because she was walking with a stick. She had such bad muscle and joint pain. She was having four showers every morning because she was getting a lot of hot sweats. She couldn't remember anything. She had very low mood. She was very dark. She had a lot of urinary tract symptoms. And I looked at her results, But then I looked at her and I said, and her periods have become very scanty.

19:15And I said, well, I'm going to try you, hormone treatments. You've been on painkillers. You've been on antidepressants. You've been on all these other drugs. So I'm going to give them to you. And this was 10 years ago. And then she came back to the clinic after three months. And we do the symptom questionnaire, don't we? And so you could see all the ticks had moved. She was so much better. She had literally nothing in the column, whereas before it was all very severe. So I thought, this is brilliant. when she came down and sat in the chair and then burst into tears and I was like oh no what have I done gave her tissues and she said I just want to thank you she said but I'm grieving for the time that I could have had over those two years and I thought gosh this is really impactful work actually she said because you know I've now walked out my walking boots because I walk from my dog I'm getting a different job I've now got a partner I never thought I'd have a partner ever again And it just made me think like how bad guidelines can be if they're not based on really solid evidence, how any real life data is speaking more volumes than anything else.

20:21And that's why even this small abstract we did, I just think, well, if it helps just one other person have a better quality of life earlier. And then we did mention, because then you came to Valencia, didn't you, in Spain? Yes. and we were just there for a day presenting some data and I asked didn't I one of the there's one of the panel who write the guidelines and I asked them why they have FSH levels do you remember I remember and they said it was so frustrating they said but how else do we diagnose Louise yeah and I said well firstly you don't always need a blood test there's not everything in medicine you need a blood test but then secondly I did say that people who were on drugs such as crotiopine which is an antipsychotic they can increase prolactin levels and then reduce fsh levels so you see people with low fsh levels who are have early menopause and one of the panel then came up to me afterwards and said what was that drug you said what is crotiopine and i said uh it's an antipsychotic that induces amenorrhea as in absence of periods because it affects the hormones and she just said oh I didn't know that how interesting and then she went off and I thought goodness me you've written guidelines and you don't know it's quite worrying isn't it worrying concerning but that's why I think research can change conversations um and nothing is black and white in medicine I mean we've published a lot about testosterone haven't we a lot and I remember so if you remember Aileen I was in Oxford I was with my daughter and she was with a friend and they were in Oxford running around outside and you presented some data to me with Dan and it was about symptom improvement with testosterone it's the first time you'd ever looked at it oh yeah remember and I started crying because it was so validating for me as a clinician because there's a lot of medical misogyny there's a lot of medical gaslighting but there's also I don't know what the word it is for it but there's a lot of gaslighting for me as a clinician saying oh you're making this up oh it's just your patient oh it's because they have a nice cup of coffee in the waiting room oh it's because it's a private clinic and so when you did that it wasn't just my patients for a start it was all clinic patients but it was also symptoms that women weren't expecting to improve i think maybe more now people know more about testosterone but this must have been about well four years four years ago one of your first projects wasn't it was the first and And when you said that joint pain improves and vaginal dryness improves and urinary tract symptoms improves as well as mood, energy, concentration, I was so, like, I think I was crying because I was so happy but also so relieved that this was actually data that we could hopefully publish.

23:06But it takes so long to get anything published. It does. And then when we have had it published and we've had more data, haven't we, and more with Mo, we've had several studies now. And then observational, real-life data. But even recently at one of the Menopause Society guidelines, in fact, two of them in the last few weeks, certain doctors have been saying how bad our data is and they've pulled it out in front of the whole audience. And one of them I challenged the organiser and they said, oh, well, the speakers can do what they like. They're quite, it's up to them to unpick data. But the thing is, we're not saying it's anything other than real world data where we're seeing people.

23:51But some people seem so intent on trying to prove that testosterone doesn't help with other symptoms. It feels really weird, doesn't it? It does. It's also, if we just go back to basics. Yeah. We've got testosterone. Women have more testosterone than estrogen. I don't think a lot of people know that. I didn't know that until we started going into it. it's a very male-centric hormone, but we've got it flooding around our body. Yeah. So if it's flooding around our body, it's doing something. Precisely. And also it's made in our brain. Yeah, we've got receptors. And it helps every cell in our brain, not just one area.

24:32And I don't think there is just one area that works on libido anyway. But it seems like since we've been publishing more data, there's been certain people that have just tried to disprove and discredit us as a research team. And I think, gosh, this is really interesting because actually as a neuroscientist who now understands about the role of hormones in the brain, you're thinking, well, that research makes sense. Whereas if you have research that doesn't make sense, the most important thing is to challenge it and question it. But the other thing is, is to replicate it on bigger numbers. So when we started, we had small numbers of patients.

25:06Now we've got bigger and bigger and bigger. And now our data sets are huge. and also having other people to analyse it is really important as well, isn't it? Yeah, and they do statistical tests. It's not like they do a simple bar chart. No, no, no. They go into depth with analysis and they still find it consistent. Yeah. So it's an exciting time, isn't it? It is. I particularly love the qualitative studies as well. Yes, so mention those. We did one on the testosterone ban, didn't we, on competitive athletes? Yes. And we did a study and we did a survey and we asked women we just asked what do you think about the band what's your thoughts on it and Louise we had so many women saying I had to choose between my love for my sport and what I've worked my entire life with and my quality of life just that quote alone sent me chills because that shouldn't be the case but we produced that came out the actual paper came out 2025 yes we did this survey probably 2024 i think and i've got a patient who's a professional cyclist and she's on easterdome she's on progesterone but she has migraine joint pain she has low libido she has low mood she has poor memory and we applied to water which is anti-doping to say she needs testosterone they turned it down so she's now she's got a big race the next couple of weeks and she's got to she is literally choosing between hanging up her bike or taking and then taking testosterone or carrying on but she has such poor quality of life her husband's also like very supportive they haven't had sex for so long but it's not just even about sex it's everything else but because it was everything else as well and I put that into the medical report they said no she has to have hypoactive sexual desire disorder without any other reason for it and so it's just the most barbaric thing so but then i'm saying well so are you saying that professional athletes with low testosterone aren't allowed a libido because that's what they're basically doing so as a human rights issue surely anybody should be allowed to have a libido so and when you read some of their information they're very confused between natural and synthetic testosterone because they talk about the harms of testosterone but it's not the bioidentical testosterone we prescribe so we're now going to put in another application to appeal we've got um a really great lawyer who's working pro bono with us which is incredible but it's so awful because awful yeah you know it wasn't just one person in this and there's been lots others that have contacted me who are professional sports players so it feels just wrong that women can't have testosterone under a medical exemption certificate but hearing those stories is even more powerful than than a tick box isn't it yeah yeah and sometimes it's more powerful than a stat yeah sometimes just hearing the words from these women so we've got a lot more plans in fact i feel sorry for you because we've got so many projects and then suddenly i'll go oh we've got this idea and that idea but you know they range from addictions to um more with testosterone to migraines there's there's so much isn't there yeah Yeah.

28:26And why? Because hormones act everywhere across our lifespan. Yeah. So we're going to change the shape of the conversation with our research. And we've got some exciting plans going forwards. But I'm really grateful. I'm so grateful. I'm publicly really grateful to you and Amy Neville, who is just wonderful as well. He started off doing admin and now she's working full time. She's literally my right hand. So you and it's very confusing, Amy and Amy. But it doesn't matter because you work so well together. and then live as well um and then georgie does a lot of our clinical audit um then we have other people we've we're very blessed but we want to expand our team and do even more because there's so much i know um so before we end three things that you want to be the most proud of for your research so either stuff you work you've done already or that you you're working on or you want to do what three things i would want our research to help women access service easier yeah whether it be it doesn't matter where they live doesn't matter what it's for just to be able to help that process a little bit better because i know that women have to really advocate for simple simple things um second would be i'm really passionate about health inequalities when it comes to different cultures yes um being a muslim and goly person myself um there is a lot of fear when it comes to hormones when I speak to my mom my mother-in-law aunties that even friends actually my own age there's there's fear there and it is because and I always think about your strawberry analogy um comparing synthetic and bioidentical it really does come to education and being able to relay that in different languages so I think being able to help close that gap yes um and there are other you know groups for example the neurodiress groups and physically disabled um those groups they matter a lot obviously um and third oh giving women a platform to really raise what they're feeling and what they're thinking yeah and just informing them of what their options are i learn new things about guidelines every single day i didn't know they were options but now i know yeah absolutely and you know i'm i mean i'm proud of a lot of my work but if someone says what a you know one of the main things you're proud of i'm most proud of our research, what we've published, what we've done together.

30:46So I'm very grateful for you coming today and just talking about it. Thank you for having me. Just finally, before I end, some of our research was presented at the FDA recently in the US. And that was all due to you and the research team. So to see the FDA, Rachel Rubin, talking about our research was a real pinch-free moment. It really, really was. But thank you so much, Amy. Thank you, Madeline. It's been great. Thank you. So just a quick one. It would be really great if you could follow or subscribe to this podcast. This will really help me reach more people with evidence-based information about hormones and their future health.

31:23And it also ensures that you'll never miss a future episode. Thank you.