Media Storm - Get Lippy! What you don't know about gynae cancer can hurt you

Episode Date: May 11, 2023

Every day in the UK 58 people are diagnosed with a gynaecological cancer. 21 will die. Lack of awareness, late referrals and widespread stigma mean people are being denied life-saving diagnoses and treatments. That's why 12th May shall henceforth be known as Get Lippy day! A campaign by The Eve Appeal is determined to get us talking about gynaecological cancer. So in this bonus investigation episode from Media Storm, we meet medical professionals and patients with lessons that could save lives. The episode is hosted by journalist Mathilda Mallinson (@mathildamall), and features Dr Aziza Sesay (@talkswithdrsesay), Lydia Brain (@lid_jar), Karen Hobbs (@karen_hobbs) and Dr Anita Mitra (@gynaegeek). It was produced by Helena Wadia (@helenawadia) and Mathilda Mallinson. The music is by Samfire (@soundofsamfire). Learn more: listen to Media Storm’s investigation into men and HPV. Become a member at https://plus.acast.com/s/media-storm. Hosted on Acast. See acast.com/privacy for more information. Learn more about your ad choices. Visit podcastchoices.com/adchoices

Let's play a game, a special game for the 12th of May, henceforth known as Get Lippy Day. Tomorrow has been crowned Get Lippy Day by the Eve Appeal, a day to get talking about our vulva's, ovaries and everything in between. Why? Because every day in the UK, 58 people are diagnosed with gynecological cancers, and statistically 21 die. Be it of the womb, ovaries, cervix, vulva or vagina. cancer need not be fatal if we know how to catch it on time. But with shame, stigma and supremely shitty sex education, so many of us simply don't. So the game.

If you could go back in time and tell your younger self one thing about gynecological health, what would it be? I could tell myself a million things because I knew so little. Okay, so this one is personal to me even now. What I wish I'd known when I was younger? My one thing I would say to myself is genital anatomical words like vulva, vagina, clitoris. Those words are not bad words.

They're not dirty words. They are just like our head, shoulders, knees, and toes. They're anatomical words. I just wish that I knew about what was normal, because if you don't know what's normal, then you're going to find it much harder to work out when something's abnormal. When something's abnormal, that's when you need to go and ask for help.

I would tell my younger self that getting cervical cancer at 24 was not your fault. What I'd wish I'd known when I was younger was a little bit more about how bleeding between your periods is not necessarily the bright red blood you experience during your actual period. First and foremost, you know your own body, you need to listen to it and feel confident in advocating for yourself. I generally wish my younger self actually knew about gyne cancers I am presenting symptoms which I am extremely worried about

half the things that I have discovered is things that I never actually knew about for example I never even knew that you could get womb cancer I never even knew that you can get vulva cancer and that is just crazy to me that it's not open and spoken about more frequently Hello listeners, I'm Matilda Mallinson, co-host of Media Storm, the investigative podcast that puts people with lived experience at the center of the story.

And today I'm bringing you this special short on gynecological cancer awareness made with the Eve appeal. Hello, I'm Dr. Aziza Sisei, I'm an NHS GP, GP educator, and I'm really excited to be here. Aziza, as a GP, what are the main barriers that you see preventing your patient? from getting the gynecological healthcare they need. One is that there is a lot of shame and embarrassment associated, so a lot of them tend to leave their symptoms quite late because they're a shame. And there's the fact that there is that lack of awareness.

So many people aren't aware of what a vulva is. For instance, there was an elderly patient who went to see the GP. Down there is the word that's used. She explained that she'd been having issues down there. He examined her anus, but she meant her vulva. How can you know what to look out? for if you don't even know the basic anatomy and how can you know that you need to get checked if you don't know the basic symptoms these need to change you personally try to tackle this lack of

awareness by publishing health content on social media but there you've met some barriers of your own can you explain what i have found with a lot of these social media platforms is that there is a lot of censorship as soon as i use the words vulgar vagina or clitoris and this is because there doesn't seem to be a distinction between life-saving health information and explicit pornographic content. They just lump them all as the same. And it really does confuse me because right now we have chat GPT and all these AI tools that can write books in minutes. But we're not able to find something that can differentiate between these two that could potentially save lives. If these barriers collectively mean that people are leaving dangerous symptoms too long,

how does that impact their health in the long run? So the big thing is cancer diagnoses. I have seen patients who've come in and been diagnosed with late stage ovarian cancer, and that's often because, again, people aren't aware, for instance, that if they have persistent bloating for three weeks or more, that that could be a symptom of ovarian cancer. So, yeah, unfortunately, sadly, I have seen cases that have led to sad outcomes. and a lot of it is because of the lack of awareness

and the shame, stigma and taboo that's associated, unfortunately. 70% of ovarian cancers are diagnosed at stage three or stage four. But late diagnosis is not just a problem for ovarian cancer. I'm Lydia Brain and I was diagnosed with womb cancer when I was 24 years old. If there's one story that explains why we need to get lippy, it's Lydia's. My symptoms started when I was 21, so there were quite a few years until I actually got the diagnosis. I first had bleeding after sex, which I did get checked out, but they thought it was just cervical electropion and it wasn't looked into any further. My periods got progressively heavier.

I would always have the largest tampon in and the largest nighttime towel. I did go to the GP a few times and we tried changing my pill, but they were trying all these things without really looking into it properly. Then I had a bleed outside of my period, quite literally a really big red flag. I'd had a flight and I'd just landed. I stood up and just flooded. The bleeding went down to my knees. I was petrified. I'd been unknowingly pregnant and had a miscarriage, so with an ex that I was still getting over. So it was quite a lot. I think it was about two weeks into like I could get an appointment because it wasn't seen as urgent and by that point they kind of said well if you had miscarriage we wouldn't be able to tell now it's too late and

he kind of just brushed it off because I thought that was quite a big thing really and it was just kind of like you know go home basically and he did say something like you were probably just stressed you know you could probably imagine what I felt at that time I was pretty furious and it didn't seem like there was anything I could do and then I began fainting and being what I found out was very anemic, and that's when they started looking into things. The scans found I had a lump, but they just kind of told me that they were fibroids, which is sort of a non-cancerous growth in the womb, and not to worry about them. He did say to me, people don't get these under 30, but don't worry about it, and that was about it.

And then by time I had the tumours removed, it was months and months and months and months later, because, you know, a non-urgent surgery length waiting time is quite long. And that's when it came back after that, that it was cancer. It sounds like this process, this diagnosis process, was dragged out longer than maybe it needed to be. If your cancer had been caught earlier, could anything have played out differently? There is a chance that I might have been able to retain my fertility, which is a huge thing. You know, when I was ill, I had to get shaken, not literally, by my friends a few times, because all I was focused on was not having a hysterectomy and keeping my fertility.

And, you know, one of my friends said to me, like, Lydia, you can't have a baby if you're dead. Lydia, how was it actually being handed this diagnosis? It wasn't delivered in the best way. You know, the word cancer wasn't said out loud, which was odd. She just kept saying, it's really rare. We don't know what it is. We found this thing, and it's so rare, we had to send your sample around to check different people. like skirting around a subject a lot without saying the word.

They gave me a leaflet on womb cancer and a leaflet on a hysterectomy. I hadn't even thought about a hysterectomy at that point. It hadn't been mentioned, you know. So when I was given a leaflet on a hysterectomy, that's when I really cried because I was just like, oh, okay, right. This is actually what she meant but didn't say to me. I had just the worst day. You know, I just went home and I cried more than I've ever cried before.

and then I basically didn't cry again for about three years after that because I think I'd just, you know, broken my emotions. Is there anything that you would like to see done differently for others going through what you did? I felt dismissed and not just the fact that they didn't investigate me, just the way I was spoken to, just because it's rare doesn't mean it's not going to happen. I'm not the only person I've met who is premenopause or diagnosed with wound cancer.

It does happen. So I think if there had been more awareness, with medical professionals that I went to, to even think to look into it. I mean, it didn't need to be cancer for me to need it looking into it. Like it was debilitating. And how are you doing today? Can you tell us, I suppose, from a listener's perspective, how did the story end? I'm six years down the line now, so I haven't had any further cancer.

You can never really know until you die of old age, whether it might come back or not. I've got as good a chance as any. And I'm now at the stage where me and my partner are thinking about fertility, which for us is obviously very complicated and difficult. I'm going to get my eggs harvested and that feels really good for me because it felt for such a long time like that door had been closed. And I mean it's not a whole lot of options and they're not the best options ever but at least it's something and we're starting that process. Dr. Aziza pointed out that censorship was making life harder for some health professionals to spread awareness. But Lydia's story shows the problem doesn't end there. Hi, my name's Dr. Anita Mitra. I'm an obstetrician and gynecologist.

Even within the health profession, lack of awareness around gynecological cancers can be a problem. As a healthcare profession, we need to listen to these stories. of people who have been dismissed. And I know that a lot of doctors, for example, get quite upset by me even saying that doctors are dismissing patients, but we can't ignore that this is happening. We have to listen to these people and we have to reflect on how we maybe need to change our attitude and our practices. Why is it so important that we get this right? So when it comes to gynaecological cancers, the earlier that we detect them, then the better outcomes that we're going to have. We know, for example, ovarian cancer is something that's often diagnosed

very late. That's really not the fault of the individual who has the cancer. I just want to stress that. Out of curiosity, why are you stressing that? Do you see patients getting blamed for this? So when it comes to gynecological cancers, there's a lot of stigma and shame because people think that it's something related to sex or STIs or they haven't been clean or they've done something wrong. And there's a lot of stigma and shame because of that. People have made all sorts of comments. Somebody wrote, simple, don't get sexually active until you can shoulder all responsibility. Someone else has said to me they wouldn't get their daughter vaccinated.

They would just tell her to keep her legs shut. My name is Karen Hobbs. I am an Eva Peel ambassador and comedian and cervical cancer advocate. When did you first start to notice something wasn't quite right? So, I had a few problems with my vagina. I was 24 and I was bleeding a little bit in between periods and after sex. Now, I don't know about anybody listening, but my sex ed was absolutely shit. I got 24 and I didn't know much about my vagina other than a period came out and a penis went in.

So I had this bleeding between periods and after sex and my boyfriend at the time, very, very strong emphasis on at the time. He said, oh, baby, is it because I'm too big for you? So I said, oh yeah, sure, maybe, thinking, no, that's not it. And I went on to Google. Some of the results were things like problems in early pregnancy, an STI that hadn't been treated or cervical cancer. I booked that doctor's appointment and really, really kept my fingers crossed for chlamydia. I was like, please, please be cheating on me.

I mean, he was, but that's a story for another time. And how did that Google search treat you in the end? Google saved my life. Karen's experience of the health service was not like Lydia's. Within a few months, she had been investigated, referred, scanned and was waiting for results. The doctor came in. I immediately knew I sat down and I said, is this cancer? Just tell me, is it cancer? Please just tell me.

And he said, we do need to wait for the results of the biopsy. But I'd be very surprised if it wasn't cancer. Karen, what happened after your cervical cancer diagnosis for you to be sitting here today still making jokes for all of us? I was lucky, even though getting cervical cancer at 24, is obviously not lucky. But in the grand scheme of getting it, I was lucky in that it was a late stage one. So I had my cervix, surrounding tissue, lymph nodes, and the top part of my vagina removed. My womb and ovaries weren't affected. So however fertile I was before, I still am, but I don't have a cervix, so I couldn't have.

have vaginal bear. And someone once said to me, like, how's you feel about that that you would miss out on the magic of child bear? And I just thought, fucking wonderful. But I suppose it wasn't all fun and games. Tell us about the issues you found as a cervical cancer patient that led you to be doing the work you're doing today. I learned because I'd never had the HPV vaccination because I was a few months too old. I learned that my cervical cancer was caused as over 99% are by the HPV virus. It's passed on through sexual contact. It's super common. HPV is the most common STI out there. Media Storm actually has an episode on just this, which looks more broadly at the state of sex education in our media, featuring Alex Fox, one of the sex experts behind Netflix's

one and only sex education. As much as sex education educates, it also has to entertain. Part of my job is kind of like putting vegetables in the Bolognais in that you want to sneak facts in there and education and useful stuff but you don't want that to be the dominant flavour or people won't want to eat it if they feel like you are force feeding them that kind of stuff they're going to feel patronised and they're going to feel bored but you know what i love about that analogy bolognese doesn't taste nearly as good as it could without celery carrot onion that is the secret of true flavor well i talk a lot about rooting so i'm going to make myself responsible for those root vegetables and getting them into the mix.

Interestingly, Helen's investigation in the Media Storm episode shattered one of the biggest misconceptions about HPV, that it only affects women. And she spoke to patients suffering from a disease they were led to believe they could never contract. You should definitely check it out. But today, we are talking about gynecological health, and we were about to find out what happened to Karen when she learned her cancer stemmed from an essence. I knew not a lot and I think in hindsight that naivety was a bit of a blessing because I went into

this diagnosis not knowing much so I didn't have in my opinion anything to be ashamed of but very quickly I had somebody at my old job she said what's going on if I could ask and I said I've got cancer and she said what kind of cancer I said cervical and she said oh how do you get that would you have asked the same if I'd said breast bowel or brain. I believe it was questioned because there is stigma associated with something going wrong between your legs inside your pelvis. That's how I felt at the time and still do. And I said it's caused by the HPV virus and she said, but I thought you had a boyfriend. You are judging me for the type of disease I've been diagnosed with. You are making assumptions about my

lifestyle, about my sexual history, my sexual habits. There's so much shame, judgment and assumption and I've experienced that firsthand by what people assume or say to me in response to what's happened to me. Yeah, that's terrible. What about how you were treated within the healthcare system? Is there anything that you would change about that? I don't wish anything different than my diagnosis and my experience and my air quote journey, but I wish it so desperately for so many other people that didn't have as easier time of it going from symptoms. to treatment. Lots of people I work with aren't able to make that initial doctor's appointment for so many reasons. Not every GP surgery are equipped for their wheelchair users or aren't able to

get them onto the bed for the examination. Assumptions are made that people with learning disabilities don't have sex or women that sleep with women. There's this age old myth that gay women don't need to have a cervical screening. I am very, very aware that I have many privileges and very few barriers that meant I could get that diagnosis. So what can we take away from today's episode that mean more and more people are able to get the diagnosis they need on time? Let's go back to our medics. So the first thing that I always say is you need to learn what's normal for you before you can learn what's abnormal. So learning about what your periods are like. Please, please, please write notes, understand your body. I really like

period tracking apps as well because it can just help you to get information about yourself throughout your menstrual cycle. And I will always say this. Please know your gynecological anatomy. It really does help. I also want everybody to know that there's no such thing as one last period after the menopause. So bleeding after the menopause is always something that you must go and see your doctor about. If you find that you're having bleeding in between periods or you're bleeding during or after intercourse. Those are all red flag symptoms. If you notice that you're getting like a volval itch or a sore in the area, a lump, really severe vaginal pain, if you notice a change in your discharge where it's become pink, you know, bloodstained, brown, dark, anything like that,

please go and see your GP. Come and see us. We want to see you. We want to do the investigations. We want to rule out cancer. And if it is cancer, the hope is that it's picked up early where treatment is more likely to be curative, successful, and less invasive. Those are the do's? What are the do-nots? Anita, anything we should not be doing? I just can't stand this huge booming industry that's developed for feminine hygiene products that nobody needs. Now, my PhD was about the vaginal microbiome, which is the bacterial population that grow in the vagina.

When you use all these washes and whatnot, they can actually wash away the good bacteria. They can disrupt the tissue integrity, allowing things like HPV and infections to get in, and are more likely to make you feel dry and irritated, so probably worsening the reason why you might be using them. The other reason why I think they're quite dangerous is I've actually seen a couple of people who have been diagnosed, particularly with vulval cancers. These are often older women who have said, I didn't really want to bother my doctor. And, you know, there's so many different washes and creams that you can get out there. So I just thought I'd try those.

And it's actually caused them to probably delay coming to see us about what actually, unfortunately, turns out to be a cancer. I just really also want everyone to stop smoking. Smoking is not good for your body. It's particularly associated with cervical cancers. It's not going to do anyone any good. And finally, Aziza, since knowing our anatomy is so important, give us a little breakdown of what that anatomy is. Okay. So down there, two big things to remember. One is that you have the internal gynaecological anatomy and you have the external gynaecological anatomy. So in the internal

gynaecological anatomy, you have two ovaries, two fallopian tubes, which lead into the uterus or the womb. Just at the neck of the womb, you have the cervix. And then you go into the vagina, which is on the inside. Okay. So vagina has the letter is I-N, which is inside. vagina in and then that leads out into the vulva which is the external gynecological anatomy and the vulva has multiple different parts so it has the outer labia the inner labia it has a clitoral hood that covers the clitoris below that usually is the urethral opening where the urine comes out and then the vaginal opening and that is it that is the gynaecological anatomy if everyone was aware of these words, I think it could really make a difference and it could save lives.

Thank you for joining us getting lippy today. The episode is about raising awareness of gynecological cancers, but stigma exists for everybody. To learn more, listen to Media Storm's episode STIs. We need to talk about men and HPV. Here's a little preview. So we were sat in the room and they said to me, sorry to tell you, got cancer, sorry. From there, when they actually described what the HPV cancer was and the virus, and they said that it's the same one that causes cervical cancer in women, it was kind of a shock really to think that that was something that was prevalent in men, but I haven't really known about.

So I kind of assumed it was maybe a generational thing. Now that I've done a lot more research on it, yeah, it seems to have been there's been a battle going on for quite a long time around the whole vaccine for boys and the girls. Thank you and tune in next week for media. Storm's special investigation into domestic abuse featuring survivors from all walks of life