Transcript generated automatically by AI and may contain errors.
Chapter 1: What is genital urinary syndrome and why is it often overlooked?
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 and I saw my chance. Yeah, it was a little bit over a year ago and I feel like we've done so much. So we brought you over to Amsterdam for the Connected Health 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... 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'd 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 urinary syndrome and menopause, it wasn't called that. It was called VVA, which was vulvovagina atrophy. The word atrophy, if you look it up in the dictionary, is withering and wasting away.
Thinning, yeah.
And actually, I don't want to think of my anatomy withering and wasting away. No. 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 dryness. 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.
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Chapter 2: How did Penny's symptoms evolve over the years?
And that's the thing, right? The janitory syndrome can be serious. 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 can say, oh, I have a headache or I pulled my back. But you're not going to say, I had this horrible problem with my private parts. You probably would get reported to HR, right? You would 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.
Mm-hmm. 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. So eventually I think... In 2023, you did the first podcast with Rachel Rubin.
And that's when I really realized it was janitory 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 amazing. So if you hadn't have listened to the podcast with Rachel Rubin, things might have been very different.
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Chapter 3: What challenges did Penny face in seeking treatment?
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 chair. 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 pessary and then I often give a cream or a gel to use externally as well. And quite often people use Prasterone, which is DHEA, so it converts to estradiol and testosterone. And using systemic hormones can make quite a difference as well.
Yeah, I have the whole picture now, including testosterone, which has been the last thing to really help it.
And has that made a difference? Yeah.
And now I can really do it two nights a week. Yeah, with the vaginal hormones. 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.
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Chapter 4: How can low-dose hormones change the lives of women with these symptoms?
And some women, 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 was like some really random numbers, between 27 and 78% of women get these symptoms.
And that's a wide range.
It's probably because a lot of women don't talk about it.
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 20 and your 100.
Yeah.
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, you know, they're all incontinent. 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.
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Chapter 5: Why is awareness about urinary symptoms crucial for women?
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 dead. I just sat there and I was like, you're just describing my mother.
And I realized, actually more and more I realized after she died, 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 had been a doctor working in a 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, I The penny dropped and I realised 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. It was quite a big practice.
So I wanted to see how many people who were in nursing homes, residential homes, care homes, warden 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, the doctor who set up the 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 were not really surprised, but we just thought how disappointing. I mean, that was eight years ago, 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 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 having to see different specialists. One of her friends, who is a lot younger than me, than my mother who's in her mid seventies now. So in the last 12 months, she started to have similar issues. She has osteoporosis. She has some rheumatic issue where she had to take prednisone.
And I'm thinking, you know how it is when you have your car and the petrol is nearly empty and a 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.
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Chapter 6: What misconceptions do healthcare professionals have about menopause symptoms?
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 health care system that's collapsing. But why isn't... more people like yourself, of course, thinking about let's start earlier and half the population can potentially have a lot of prevention.
Yeah, it's a total mind shift that needs to happen. 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 genitourinary 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 genitourinary 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 janitorial syndrome 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...
genitourinary syndrome 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 or subscribe because it will really make a difference to grow numbers, enable this to reach even more people. Thanks so much.
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