The Dr Louise Newson Podcast - 61 – Living with untreated urinary symptoms

Episode Date: April 28, 2026

In this episode, Dr Louise Newson is joined by Penny Pijnenberg for a powerful conversation about genital urinary syndrome, a condition that affects mostwomen but is still rarely talked about.Penny shares her experience of living with severe symptoms for more than 14 years before realising they were linked to perimenopause, and the frustration of not being offered the right treatment.Together, they explore why these symptoms are so often missed, how they can worsenwithout treatment, and why simple, low-dose hormones can be life-changing. Nowpassionate about raising awareness, Penny is helping ensure other women don’t go through the same experience.We hope you love the podcast! If you enjoyed today’s episode, don’t forget to leave a 5-star rating on your podcast platform.LET'S CONNECT  Subscribehere 👉 https://www.youtube.com/@menopause_doctor Website 👉 https://www.drlouisenewson.co.uk/Instagram 👉   /@drlouisenewsonpodcast  LinkedIn 👉     / https://www.linkedin.com/in/drlouisenewson/ TikTok 👉   / https://www.tiktok.com/@drlouisenewson Spotify 👉 https://open.spotify.com/show/7dCctfyI9bODGDaFnjfKhg  LEARN MORE Read Penny’s work with The Dutch Foundation 👉 https://overgangenhormonen.nl/ Download my balance app 👉 https://www.balance-menopause.com/balance-app/Get tickets for my new theatre tour, Breaking the Cycle 👉 https://www.nlp-ltd.com/dr-louise-newson-breaking-the-cycle/ Pre order my new book 👉 https://bio.to/ThePowerofHormones

So Penny, you're here in London. I've seen you in Amsterdam where you live. But I met you in London, actually, didn't I? Because I was on my theatre tour, my last theatre tour. And you came up at the end and said, I want you to come and talk in Amsterdam. One minute, yeah. I had one minute at the book signing. Yeah.

And I saw my chance. Yeah, it was a little bit over a year ago. Yes. I feel like we've done so much. Yeah. So we brought you over to Amsterdam for the Connected the weekend. Then I interviewed you for the article about long COVID and hormones. And you were so kind to review it and we were in touch. And yeah, it's great to be here. I mean, you know,

I called you already back in Amsterdam. I work in sports advertising. So I think now you know this term goat. Yeah. Which doesn't mean the animal, but it's the greatest of all time. Oh, you're so kind. So, and I think you are the goat of menopause. Oh. So, owner. You know, I was in Amsterdam. We had a great weekend. I gave a lot of presentations to women, men, healthcare professionals. And the healthcare professional section was really busy.

I gave my presentation. And then you gave yours. And I thought I knew you really well. I knew you'd had a story. And I knew that your health had improved on hormones. But I didn't know how much you had suffered. And you have kindly agreed to talk about your suffering. Because lots of women get symptoms.

And when I read articles, it will say the majority of women have symptoms related to genital urinary syndrome of menopause, like 70%, and probably only about 8, 10% of those women have treatment. When you read it on black and white, you think, oh, that's bad and you keep reading the article. But when you talk to women who have symptoms, it's not just words on a page. And when I first learned about genital, ure, syndrome, the menopause, it wasn't called. that. It was called VVA, which was Volvo vagina atrophy. The word atrophy, if you look it up in the dictionary, is withering and wasting away. And actually, I don't want to think of my anatomy withering and wasting away. And then some people, even then, VVA was a bit of a mouthful. So they'd just say any vaginal dryness. But as you're talking a bit, it's not just always. Dreness.

we're trying to change the terminology actually with a group of people I know in America to just genitourinary syndrome because it's not just menopause. My 23-year-old Jess was on the podcast recently talking about her use of vaginal hormones and she has PMDD. She's not menopausal. If I wasn't her mum and she didn't have access to a good menopause specialist, she would be having lots of symptoms. I think back in the past as a GP, I had lots of patients with, I thought, recurrent thrush, a lot of vaginal soreness, irritation,

urinary tract symptoms. Never once did I think about hormones in them. So I don't think it should be called GSM. I think the M is wrong. And for you, it certainly wasn't menopause where you started to experience symptoms, was it? Yeah, in hindsight it was perimenopause. Yeah. Yeah. So it started definitely from my 40th because I have letters from the gynecologists and I can see the year.

But I think actually it probably started already late 30s. And it started just with first irritation after sex. And then it was a few days. Then it turned into irritation just out of no reason. And then I, it was a few days. Then it turned into irritation just out of no reason. And then I noticed a pattern myself where I would have irritation just before I had my period. Because at the time, I still had my period every four weeks. So, yeah, now I know it was perimenopause. And I went to the GP. Then I went to, after I think it took two years, then I went to see a gynaecologist. And again, I mean, this was, we're talking 2012, 13. So I'd like to think now that people know more about it.

But it's quite sad. And I actually, at some point, I even, and I have the letter still at home back from 2013 where the gynecologist actually writes in her report saying patient thinks it's also linked with hormones. Like you were crazy. No, not crazy, but she just put it there as a lot. fact because I'd mentioned it and I thought it was linked to my periods which in a way it was but it was hormones perimenopause and I I basically it went on like that so were you given any hormones at that time no no and they never really figured out what it was in the letter literally

that went back to the GP it says it could be lysis sclerosis maybe it's it's a tumor like they listed basically everything, so I never really got worried. But it was just super annoying. And it was like, and I see a lot of, I'm in an international support group, I see a lot of women using the word flare-ups. So, and it started with a few days of flare-ups. Then over the years, it went into weeks and eventually even months. And of this, and again, like I never had any bladder infection or UTI and that's the thing, right? The janitorious syndromance can be many things. So my main problem was just like this crazy irritation.

I described it. I think in the presentation, it was like this constant feeling of having like a fire and a whole colony of ants growing 24-7 through your underwear. And you still have to function, right? and it's not something you're going to moan about at work. You know, you can say, oh, I have a headache or I pulled my back, but you're not going to say like I had this horrible problem with my private parts. You probably would get reported to HR, right?

You'd say these things. And was it affecting your sleep? Yeah, sometimes it was difficult to fall asleep, yeah. But I think mainly throughout the day, you know, at night you can also like not wear underwear, but throughout the day and with cycling and there were whole periods where I could only wear leggings and even sitting

like towards the end. So I basically struggled through like I think eight years and in the beginning it was just the thing where I thought I need to solve this because this is going to it's interfering with my sex life

so as you know I work as a producer so I'm used as a producer, you're responsible for like organizing, managing everything. So a good producer will always be ahead, two steps of everybody else and have like a plan. So if this happens, we have plan, B, C. So and I feel like this is how I manage everything in my life. So I was thinking like, okay, this is a problem now.

I need to get this fixed because this is not good for the future. And so that's how it started. But I mean, eventually over years, it got so bad. And the flare-ups got longer and longer. I mean, it was more like, how can I get through the day? How can I actually cycle? How can I sit down? So it was really, yeah, if I think about it, so sad.

And then because I couldn't accept it, I kept searching. And again, this is quite a long time ago. now nearly 15 years. So luckily now there's a lot of information and, you know, we're doing the podcast. And so eventually I think in 2023, you're, you did the first podcast with Rachel Rubin. And that's when I really realized it was janitorious syndrome of menopause. I had already kind of figured out a few years before that, that it was probably this vaginal atrophy. But again, like that term, as you were just saying, it's wrong. And the interesting thing

was what you guys were saying on the podcast. And that's when I was really like, oh, my God. I think it was Rachel saying that very often she would see those symptoms starting even before any other perimenopause symptoms started. And that's when I realized that's me. That's me. That's amazing. So if you hadn't have listened to the podcast with Rachel Rubin, things might have been very different. Yeah. And I probably would have struggled even longer. So eventually I found another gynecologist.

And she actually, she diagnosed. She said, yes, this janitor syndrome of menopause. I still have that letter at home as well. And for me to actually read that and like a specialist, finally saying that already helped. But then it took a year to actually heal properly. And also, because I'd read this in the international online support group where someone had said they actually need much more of the traditional doses, which is two weeks every day, right? And then you're supposed to do it twice a week. And I read about someone saying that she actually

actually needed it every day. Every day for a long period. So I discussed that with my gynecologist. And I'm so glad that she was actually, she said, that's fine. Here you have a longstanding prescription and, you know, just experiment yourself. Because I also see a lot of women in that support group in different countries where their doctors just refuse to prescribe more. Or they're saying, oh, it's not helping.

But it's probably because they don't, you know, they need more. So it took me a year. I needed at least five times a week. And now it's all under control and I was able to reverse it. But it's so, I basically, so that was 2023 when I got properly diagnosed. And then it took another year. So now that was 14 years of, yeah, wasted a little bit. Yeah.

It's so sad because it is one of those symptoms that just progresses without treatment. You know, some people find that their flushes or sweats don't last. You know, they might last months. They might last a few years, but generally they tend to improve with time. But this is one of the symptoms that doesn't. And it's, like I say, so common. But people don't always know what to look out for. And I think if anyone has any irritation at all or any sort of awareness,

like I know, you know, as we're sitting talking, we shouldn't be aware of our vulva and our vagina. You know, we're not aware of other parts of our body in the same way. Whereas if you are aware, then there's probably something that's not quite right. And just the, I say in inverted commas, irritation burning symptoms, that you say you're at work, you're in a meeting, you're trying to sit down. And I wasn't really taught about it as a medical student or a postgraduate. And I remember the first time I saw someone with symptoms,

similar to yours in my clinic. And she said, oh, do you mind if I don't sit down for the whole consultation? And I thought, well, the chairs are quite comfortable. And then she said, I've just driven in my car to come here. I really need to stand up. And she was wearing this long, floaty skirt. And I said, oh, can I examine you? And she said, but she wasn't wearing underclothes.

And I'd never seen anyone that extreme because as a GP, I would always get on and treat people. She, like you, had seen lots of doctors, tried to get help. She'd had biopsies. She'd had steroid creams. Nothing had helped at all. But the doses of the vaginal hormonal preparations are very, very low, incredibly low. And so using them every day really isn't a problem. And some people need to use a pezzary. And then I often give a cream or a gel to use externally as well. And quite often people use prasterone, which is DHA. So it converts to estradiol and testosterone. And using systemic hormones can make quite. a difference as well. Yeah, I have the whole whole picture now, yeah, including testosterone,

which has been like the last thing to really help it. And has that made a difference? Yeah. Yeah. Yeah. And now I can really do it two nights a week. Yeah, with the vagina hormones. Yeah. Yeah. But I'm never coming off them. No. And you don't need to. And I think that again is really important because some women, sadly are taken off them after a certain length of time, but there is no risk with these hormones because they are such a low dose, so they don't get absorbed into the system. And once you stop using them,

the symptoms are likely to come back and you do not want them coming back at all. No, I've other, some friends in my circle of women, I've told them one who had recurring bladder infections. As I said, you need to go and get a prescription for this. And she started another friend who had some issues, who had some doubts about starting hormones, but she was really happy. And it's like everybody needs to know about this. You know, if this was a male problem, I always try to explain.

So let's see how this was if this was an issue man. Right. So let's try and explain this to man. So you have this constant burning penis. Your foreskin is really hurting. You have small cuts appearing out of nowhere. You know, you don't even want to have sex. So how would this be?

Like, no man would accept this, right? Like, the whole world would be, I think it's one of your colleagues saying there would be a vaccine. Maybe Rachel Rubin is saying this. There would already be a vaccine for many years. And I think also genitory syndrome of menopause or hormones, it's probably the last taboo of menopause. This year I'm taking a new show around the UK called Breaking the Cycle, The Power of Hormones. I'll be visiting theatres across the country to talk about something that affects every part of our lives. It is still widely misunderstood.

And of course, that's our hormones. They shape how we feel, how we sleep. how our bodies function and how our health changes over time. And yet so many women are left confused, misinformed or simply not listen to. So in this show, I'm going to be unpacking how hormones really work, where medicine has gone wrong and why women's health has so often being overlooked. I'll be sharing the science, some of the history, and also real stories behind decades of misinformation,

alongside practical insights that can help you understand your own body better. There will be moments that challenge what you think and know and space to ask questions you may never have been given answers to before. If you want to learn, reflect and leave feeling more confident about your own health, I'd love you to join me. Tickets are on sale now. There's a link in the show notes. I think it's trivialised as well.

I think a lot of people don't understand. the association with the urinary symptoms and the localized symptoms, a lot of people think, oh, it's not that bad, and they don't understand or they don't want to understand. The treatment is so easy, actually, but it can take so long. And I think also, a lot of clinicians still are embarrassed talking about sex or talking about those localized symptoms, which is crazy. I think, you know, in the Netherlands, I like to think we're quite open. I think your sister was saying after my presentation, oh, it's so good. Dutch people are so open. And normally, I must say I'm a very private person, but I think after my struggle for, you know, like I said,

it took me 14 years. I feel like every woman on the earth needs to know. And also because symptoms can start in your 30s. But also if you don't get this around your menopause, I know a woman who's in her 70s who just recently started getting these symptoms. So I've been helping her with like, you know, getting the right treatment. So, and I was reading another article where they said between,

it's like some really random numbers, between 27 and 78% of women get these symptoms. That's a white range. It's probably because a lot of women don't talk about it. Yeah. But let's say, So basically almost everyone, right, that's nearly 80% of women who can get this, at somewhere between, well, you're saying your daughter has it.

So let's say between your trinia and your hundreds. Yes. Because a lot of women in the care homes or older women get all these UTIs, right? My sister works in a care home. I've once asked her. I said, is this actually true? And she says, yes, a lot of them. and the doctors give them a lot of antibiotics.

And it's so sad. It is. Yeah. And I remember going visiting a lot of nursing homes as a GP and they'd often smell of urine. Yeah. But they're all incontinent. And but again, I didn't think about hormones.

You know, I feel really embarrassed and I didn't. But actually now we've got this knowledge. Everybody should know about it. And like the forums, the people that you're giving advice to, it's so important because then they know there's an option for them so they don't have to suffer. But also the doctors in the care homes, when you came over to the Netherlands,

I was trying to get in touch with the doctor who was at the care home where my mother lived because I wanted her to see also your presentation about the risk of not taking hormones because I think the people that are the charyiatric doctors that are treating elderly, I don't think they are aware of this link. I think where, yes, it might be too late to start an 80-year-old woman, maybe on hormones. Not at all.

Yeah, that's a whole discussion too, right? But at least I think it's good if those doctors understand, but there seems to be a gap. Yeah, there is, I mean, there is a big gap with education for the doctors and education for women. And I think actually that gap is getting wider because women are understanding it a lot more. But there's still this resistance by doctors. and I'm not quite sure why. Some of it is due to lack of education. Some of it is due to the misunderstanding.

So, for example, you wouldn't start an older woman on synthetic hormones. So a woman in their 70s or 80s, I wouldn't start the older types of estrogen, the pregnant horses urine, estrogen, or the synthetic progestogens, because there are risks with them. But the natural hormone, eustodial, the natural progesterone, the natural testosterone, the natural testosterone, there's no reason. And in fact, one of my doctors who works with me yesterday was saying that she had lady in her late 70s who came to see her with her daughter three months ago.

And she was barely climbing the stairs to go to the consulting room. Every step was a real effort. It was so painful. And she came back for a review this week and she just walked upstairs. And she didn't realize it was the same person. And she said that's just three months of being on hormones. And so I do worry when you look at the older generation who have missed out. You know, we're both similar age in our mid-50s and we're lucky we've.

chosen to take hormones, but there are women in the generation above us, really, who are struggling and you see them in the nursing homes. And I often wonder what would their lives have been if they had hormones available to them. Yeah. Yeah. So my mother passed away about a little bit over a year and a half ago. And the last nine months of her life, she was living in a care home. And when I was, each time when I, or the more, I was there, I looked around and I thought, it must be 70% of the people living here that are women. And they all had similar things. And, you know, you never, you get, you don't get into these care homes anymore just with one thing.

And my mother, she had rheumatoid arthritis. She had a severe heart disease. She had a pacemaker. she had macula degeneration, which I think is linked to oxygen, lack of oxygen. And then about a year before she died, she was also diagnosed with Alzheimer, which is also associated. Yeah, I always said the only thing she didn't have was osteoporosis, but I think the rheumatoid arthritis was quite bad.

But looking around, like a lot of women had Alzheimer's, they had osteoporosis, you know, they were all working with. My sister was saying a lot of them have the UTIs. And I think it was about four months after she died when I saw your show in London in October 24. And in the first half of the show, you had this picture of like what happens when your hormones kind of basically get lower and lower.

And you showed this picture of this old woman being hunched. And I just sat there and it's like, you're just describing my mother. And I realized, actually, more and more I realized after she died, like I think everything that she was suffering was probably the lack of hormones and looking at all the other women. And I recently saw a Dutch doctor on LinkedIn who apparently has, she's now working with menopausal women,

but she apparently has had been a doctor working in her care home. And she was actually putting on a post saying exactly my thoughts, thinking, but isn't that if all these women would have had hormones earlier, maybe they would be in better health? Yeah, it's so interesting. Just before I left my GP practice, the penny dropped and I realized that a lot of the women I visited weren't on hormones, they weren't using vaginal hormones or systemic hormones.

So I did a search just in the record because it was quite a big practice. So I wanted to see how many people who were in nursing homes, residential homes, care homes, ward and control flats, had carers visiting them. How many of those women were using either HRT or vaginal hormones? You could probably guess the number. Yes, zero. Nothing. And Rebecca Lewis, a doctor who set up the prenaturally. clinic with me did the same. In her practice, it was in a different region. So different women,

again, she couldn't find any patients. And we were both really, we was not really surprised, but we just thought how disappointing. I mean, that was eight years ago. So, but I don't think it's any better. But you do wonder when people are going to suddenly realize, and I don't know what it's going to take for people to realize. I think it's, yeah, our generation, who's probably now kind of saying this, this is it. Because it's quite, again, I'm not a doctor. I don't have any statistics. But if I look back at my mother, around her mid-70s, her problems started.

Her heart problems, her rheumatoid arthritis. And basically the last 12 years of her life, she was living in really bad health. It was like constant going to see, having to see different specialists. One of her friends, who is a lot younger than my mother, who is in her mid-70s now. So in the last 1012 months, she started to have similar issues. She has osteoporosis. She has some rheumath issue where she had to take retinism. And I'm thinking, you know how it is when you have your car and the petrol is nearly empty and the little light will come on?

And you can probably still drive, I don't know, 10 miles, 20 miles. And the way I see it is so your period stops, your menopause, so the red light comes on and maybe you can still you know have another 10, 15 years in reasonable good health but then it's like the car stopping and I think it looks like that

the light going off finally going off the petrol tank being empty is around maybe your mid-70s and the other gap is and I've seen this with my mother is because of medication and treatments and the protocol for the doctors

that you probably know better but also in the homes is they will try and keep you alive as long as possible. But I've also thought about to what extent, you know, looking at my, again, at my mother, the amount of medications she was taken

for all these different diseases and symptoms. And then she prescribed medication for the side. effects of other, you know. It's layers and layers. And you're absolutely right, because we know that as women, we're getting less healthy as we age.

The last 10 years of a woman's life is often in poor health. And that's really sad because the number of conditions they are diagnosed with, the number of medications they're on, that you say, a lot of medications have side effects, so they have more medication. And it's losing independence is something that we don't want as well. So anything we can do to improve future health, not just our lifespan, but our health span, is really important. And if you look at hormones, they tick so many boxes to improve. But I still think there's this sort of willful blindness by a lot of clinicians that they're not thinking ahead.

They're not thinking about how can we keep Penny as healthy as possible. It's more let's wait till Penny's ill and then we'll give their treatment. And we've got to change that. That whole, what I was saying earlier, like this whole project manager mind that I think is anyway lacking in a lot of industries. So we need to project manage medicine in a different way, really. But also, so I was a caretaker for my mother in the last few years of her life and her palliative phase.

And I've also gotten a lot of experience and insights. And besides hormones, I'm also trying to raise a little bit awareness about. that. And again, I'm seeing, I don't know how it is here in Great Britain, but in the Netherlands, they're saying about five million people are caretakers. And a lot of people have to take care also and work their job. And I bet, and I think I don't have statistics, but the majority is women. But let's say even it is equal. I think it's more. But I think it's more. But, let's say that's still two and a half million. You want to make sure

women are healthy. And also you want to make sure because the other discussion, which I think is the same here, everybody's saying the healthcare system is collapsing. Too many people are aging. And it's a blind spot.

So we need people to stay healthy. Also, we need people to work for the economy. We need people to take care and we have a healthcare system that's collapsing. But why isn't more people like yourself, of course, thinking about let's look. It's so obvious, isn't it? Yeah, like start earlier and half the population can potentially have a lot of prevention.

Yeah, yeah. It's a total mind shift that needs to happen. And I don't know, conversations like this will enable people to think differently. and somewhere, somehow, things have got to change for future generations who can't keep this because it's just not fair on the women that are being harmed by them being refusing hormones. So I'm really so thrilled that you've come over, Penny. And I haven't spoken in so much detail about geniturine syndrome for a long time. So I am hoping this will really resonate with people.

And those of you listening, please share it with as many people as possible. So before we end, three take-home tips. So three things that you think people should do if they're experiencing any symptoms which may be related to genitone-Rie syndrome, what are the three things that you would recommend them to do so they don't suffer for years like you did? Yeah, read up.

I've also, besides the long COVID article even before last year, when the official janitorism of menopause guidelines came out, I've written another article, it's in Dutch, maybe I need to do a translation. But yeah, read up. I think you have a lot of information because you might find that maybe not all your doctors

have the right information. And also be aware that janitorious cinema menopause is basically like an umbrella term, right? It can be anything from bladder infection to irritation to clitoral atrophy. Yeah, lots of things. So, yeah, I think with anything, menopause, educate yourself. Yeah, so important.

Yeah. And share your knowledge with others, I think, is even really so important because a lot of people are trivializing their symptoms and we need to be enabling them to have treatment as promptly as possible to reduce suffering. So, well, thank you again so much for sharing today. It's been great. Thanks for having me. Thanks so much for listening. It would be amazing if you could follow me.

subscribe because it will really make a difference to grow numbers, enable this to reach even more people. Thanks so much.