The Dr Louise Newson Podcast - 258 - I’m 27 and perimenopausal: how testosterone helped my symptoms

Episode Date: May 28, 2024

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 HRT, 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:   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. 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. 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.

Hello, I'm Dr Louise Newsom. I'm a GP and menopause specialist and I'm also the founder of the Newsom Health Menopause and Wellbeing Centre here in Stratford-Pon-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, and always inspirational personal stories. This podcast is brought to you by the News and 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 Ellen, 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 Ellen to the podcast. So thanks ever so much for joining me today. Oh, thank you for having me. So I really believe in connections happen for a reason. And it's really, really weird actually.

So I am very conventional and 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 they had a cartilage, and then my middle daughters 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 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 realize 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 just 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, Ellen, we both came in.

Yeah, I do. Yeah. And Jessica went first and we chose what it, and it was such an amazing experience because you were so calm and you explained everything and you put me a tease and I didn't feel like I was far too old to be sitting in a tattoo parlor, 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 one of the bits came out. So she went back to see you, didn't she? Yeah, she did a couple of days later. 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,

Mommy, I'm really worried about Ellen. And I was like, who? I'm sorry. And she explained, and she said, I've just gone in back into the piercer, and I think some of it's related to her hormones, and I've told her to listen to your podcasts 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 happens. So what happened with Jess? What did you say to her or what happened for her to think about your hormones? 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 our week's been, how. And then it was just saying,

I'm tired and it turns into a question of, oh, how long have you been tired? And it's 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 peaked 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 mom actually knows all about this and said, have you ever heard of this podcast? Have you ever heard of my mom? And I was 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 you. 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 she'd experienced it too. And it was really, I think 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. 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? 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. Yeah. And then starting on some steroids and everything seemed to get a little bit easier. Realising my skin was quite dry and everything I'd 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. It had been chatting to Haarling Street, chatting to my urologist, and I tried everything. 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. No, and you had, did you have sepsis at one stage with one of your unit tract infections? Yeah, it turned into a brief. trip to A&A, probably twice, I'd say, I think if I look back once when I was 20 and once when I was 23, that would have been in lockdown, yeah. So very scary. Yeah, it's almost felt normal by that point, which is sad. I know I 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 grand passed away was from result of your re-sepsis. So you realised the full extent of it then. Absolutely. So you had urinary symptoms, you had recurrent urinary tract infections under eulogists for many years, but then you had other symptoms as well, didn't you? The more recent ones are when I couldn't sleep. I didn'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 of my legs in the air. And doctor's just telling you to eat more, to sleep more, to know if you exercise and push through it, it will pass. But it never passed. It just kept getting worse and worse. And I love going to the gym. I love going on long walks. And I have to. couldn't even walk up the hill without sitting to try and catch my breath. Yeah. And in the gym was just almost like, I started to think I was getting something like Parkinson's in the end.

I'd really got into my own head with it, but thankfully it wasn't. I'm very glad to be. But it's very scary, isn't it? Because, you know, you want to exercise. You've got the motivation. You go, your stamina's not there. And you were saying that you were falling asleep on the tube going to work or coming back from work.

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 at 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 finish my dinner sometimes as well. 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? Yeah. Yeah. But he's. helped with me realize 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. 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? Yeah, sometimes they didn't even come at all. And so,

you know, when we talk, and I've spoken before on this podcast about premature ovarian insufficient, or POI it's called, which is common. It affects at least one in 30 women. But that's when periods have stopped. But we also know the perimenopause can last for 10 years or so before period stop. And so in medicine, I think it's cruel and wrong to wait for something to happen 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 peri menopause at all. And then that makes it. quite difficult and obviously I felt quite guilty almost that I've hoiked you out of, you know, from piercing my ear to saying, let me try and help you. And I, 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 new and retract infections and you told me you had lichenschlorosis as well. And your skin and 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 sclerosis. Yeah, just explaining, oh, it's an older woman's problem or it's an older person's problem. It shouldn't

be affecting you and they never explained that with how mine 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 would know 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 game changer, like my skin, you wouldn't even guess now. It looks normal. It's amazing, isn't it? And so for those people listening, and Ellen has given me full consent to share,

but I started just giving you some local hormones. So that's vagina hormones. And I decided to give you intra rosa, which is prasterone, which is DHA, and it converts to estrogen 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 test as a guide. We can't do a blood test to make the diagnosis, but I wanted to see if your testosterone level and estrogen 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 like with vaginal hormones, if you stop using them, they wear off. So they don't build up in the system or anything. and your localized 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 sclerosis, 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? Yeah, thankfully I haven't experienced issues with that as it was all very quick diagnosis only on steroids for 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's quicker. You don't have to wait for it to drive before you get dressed.

Yes. It gives you all that time in the morning or the evening again that you wouldn't normally have just sat on the bed waiting for it to dry. 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 presary. Once it's, you know, being used, often people don't really realize 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 I, 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 does. 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 estrogen 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?

Well, I've 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 of the discomfort of clothing against my skin. So I was like, I'll try it. I'd say HRT helped me feel about 40 to 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 any of this in school. Doctor never mentioned any of it. My 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've been offered. 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 I, 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 of it. 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 different.

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. Yeah, my bags aren't down to here and all down to my chin. But you tell me you're working longer hours as well, which is good. Yeah, I've picked up extra days. I'm back into a sleep routine, which I haven'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 completely huge into how it was when we first met. 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 pissed, we'd never have met and you're only 27. So would you have carried on for 20 years before you reach the average age of the perimenopause, you know, into your 40s? And how would your life have been? Yeah, because I would have never 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.

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, really sad. But I know that if I'd met you 10 years ago before I started opening 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 on our muscles and 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 So urinary symptoms often improve with testosterone in addition to estrogen. And testosterone is 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 estrogen 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 being recognised, and then the people are not having the treatment. So you've been distanced from you a urologist, haven't you, which is great? I have. I thought that wouldn't. I'd never see the day. And what did your urologist say? Was he? Well, I'm saying he, it could be she. Were they pleased?

There was a group of students there as well. We'd done my last cystoscopy. And we'd done my last, I can't know what it was called. The amount of urine that you can hold in past. Was it aerodynamics? Yeah, that's the one. And they were really shocked to see that I didn't have a problem with my aerodynamics. That's what they had their money on from. the start, even though I'd 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 of the young people in the waiting areas in the past that I know haven't had access to that information yet. So again, it's 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. 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.

really wanted to learn. There's a lot of sort of skepticism when I talk to some groups of doctors, but actually they see it already. They see that local estrogen pezzaries 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 talked 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, on 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 analogs 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 that no one's been taught. And then a lot of people will 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, Ellen, 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. I think I'd have cried. 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 I'm 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 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 that 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 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, 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. sleep at night. In my mind, are really good measurements that things are going in the right direction for you. And there's lots of other weird symptoms as well that you'd have, like, weird reactions to certain foods. I've not had that since starting. And then weird, um, 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. We're going on.

And like you said, it's such a tiny amount I'm using when I actually put it onto my you think that's not going to do anything. Yeah. It's such a tiny amount and it makes such a big difference. 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, Ellen, 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. The top 4.9 say 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 listen to your symptoms, but it's when they were happening as well. So having a, almost like a log of what happened on what days, just to make sure everything that they want to quickly rule out that they're not running it out. So, for example, if you've not eaten very well for that day, you're not, if it's affected by food or 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, we don't 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 get to the next step. So as it is, potentially try some hormonal contraceptions, 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, oh, 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.

such a big difference it made for me. So just don't be scared to try things as well. 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 hoiked 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, Ellen, for your time. It's been great. Thank you for having me. You can find out more about Newsome Health Group by visiting www.newsonhealth.com. And you can download the free Balance app on the App Store or Google Play.