#102 Viva La Vulva

Kylie: [00:00:00] Welcome back to episode of the Hormone Hub Podcast, where we talk all things perimenopause, menopause, and have the conversations no one else is having. Sit back, relax, and enjoy this episode. 

Hello, hello, and welcome back to the Hormone Hub podcast. I’m your host, Kylie Pinwill. And before I introduce today’s guest, I’m just going to set the scene a bit and give you a bit of context. So today’s guest is a 30 year survivor of vulva cancer. Okay. And she spent the last 30 years fighting for more awareness, more research into women’s gynecological cancers.

So there’s five main types of gynecological cancers. We’ve got cervical cancer. We’re all aware of that. We have pap smears, there’s the vaccine that’s available and quite often it’s quite a straightforward treatment. There is ovarian cancer and ovarian [00:01:00] cancer is, unfortunately one of the biggest killers of gynecological cancers.

And this is because it’s generally detected quite late. Now we had for those Long time listeners, we did have a episode where we interviewed Alvina, who was in Canada, and she was currently at that stage undergoing treatment. Happy update. She has successfully finished her treatment and has been given the all clear, which is amazing.

So she’s doing really well. I’ll keep you updated with how she’s going. There’s uterine cancers. Vaginal cancers and vulva cancers. So there’s also a very rare fallopian tube cancer and cancer of the placenta as well. But again, not, not so common but I think it’s still worth mentioning. So some of the symptoms of gynecological cancers, which I really wanted to mention because, we tend to just push these things aside and I have women asking all the time in our Facebook community, I’ve got [00:02:00] this going on.

I’ve got this going on. I’ve got this going on. And I always encourage you, if you’re, if something is new or something is a bit odd, just get it checked, if anything for peace of mind, but, early detection is everything. So some of the symptoms that could be caused by gynecological cancers, could be sort of an abnormal or persistent vaginal bleeding.

For example, if you’ve been through menopause and you start bleeding any bleeding, that’s not a normal part of your menstrual cycle. Or if you start bleeding after you’ve had sex if you are getting an unusual vaginal discharge. If you’re feeling any pain or pressure or discomfort in your abdomen, if you’ve had, unexplained weight loss, if you’ve got swelling, in your abdomen that sort of come on and that’s that’s new for you.

Any change in your bowel or your bladder habits. Pain during sex any itching or burning or soreness, in your [00:03:00] pelvic region on your vulva, any lumps, any sores, any sort of wart like growths. Now, obviously as we Everything health, there’s a number of different conditions that could cause these symptoms.

But if any of these symptoms are experienced, it’s really important that you talk to a doctor. Now I’m just about to introduce Kath. Before I do, Kath had vulva cancer. So I wanted to just sort of explain the terminology here. So the vulva is the global term that describes the All of the structures that make up our external genitals.

Okay. So the components of the vulva are the mons pubis, the labia majora and minora, your clitoris, the vestibulus bulbs, the vulva vestibule, the Bartholian glands, the skeins glands, the urethra and the vaginal opening. So, we’re talking all of those things collectively and, one thing that Cath is on a mission to is getting us [00:04:00] using the correct terminology because if we’re using the right terminology, we know what we’re talking about.

Okay, so before I go any further, I would love to introduce Kath Mazzella. She has been given an Order of Australia medal for her work in women’s gynecological health and for bringing awareness to women’s gynecological health. So welcome to the show, Kath.

Kath: Well, thank you, Kylie. I’m really honoured to share my message with you and your audience. 

Kylie: Yeah, thank you. Now, Kath, your story in gynecological health sort of started about 30 years ago. So do you want to just sort of walk us through, what your experience was and then how you ended up doing what you do today?

Kath: So what a journey it’s been. I had, in 1988, I had an abnormal pap smear. And I was told to have my cervix lasered and pop off and, and, you know, get on with your business. And I used to think, well, we had [00:05:00] signs behind the toilet doors and it said if you Make sure you have your pap smears. And I used to think, but why don’t men have pap smears?

Why don’t, because we were not given the information. It was like walking in the dark, but we did as we were told. Yes. 18 months later, I found a lump next to my clitoris and I went to two GPs and two gynecologists and they said, Oh, it’s common. Don’t worry about it. But in the end, my mom said, it’s not normal to have lumps anywhere in your body.

And I thought, mom, what would, you know, post to these four experts, they know exactly what they’re doing. Because mum had had breast cancer, so she was pretty much sort of pretty much aware my mother and my two sisters also had breast cancer. So they were pretty much on the ball with the knowledge and all that sort of stuff.

So, and so eventually I asked for it to be removed and it turned out to be cancer and I was found at home while I was by myself and told that was actually cancer [00:06:00] and that I needed to see a gynecologist oncologist. Well, I didn’t even know such a person existed a specialist for gynecological cancers.

And so I was pretty much in the dark. I was admitted to hospital and the saddest day of my life was to remove my clitoris. vulva, lymph glands, and also six weeks radiation. Wow. Wow. You know, I really find it a challenge how to express what that feels like. People say, oh, how does it feel like? I don’t know how to express the the angst and the the betrayal and the Whatever else went with it, that this is why I do this 30 years later because I cannot make sense of the whole thing and until I can get that awareness out there, well, perhaps then I will understand why it happened to me.

Kylie: Yeah. And was there any sort of preparation? Before you had [00:07:00] the surgery about, you could, we go in there and we might have to take your clitoris and this means, did they, was there any sort of talking you through what that meant for you? 

Kath: Well, there was my husband and I were there and he, we both remember the gynecologist drawing on a board, how he wants to cut the clitoris, he has to cut the clitoris out because the cancer got next to the clitoris.

And you’re sitting there and you think, oh, you know, would I rather just. die with this. Or do I’ve got three children. I saw that they’re teenagers and I thought I’ve got to leave. I’ve got to leave. So I was prepared to do that. I went home, everybody else went on about their business. And I started to question why did this happen to me?

And why is this so much stigma? Why is it so embarrassing? And even I didn’t know what a was at that stage either. But I was given a brochure. And there was the, on the brochure, the cancer brochure, there was the ovaries, cervix, uterus, vagina. The [00:08:00] vulva was cut off. I thought, but why is the vulva cut out of me and why is it cut off the cancer brochure?

Yeah. And so began my search. I found another woman who belonged to a powerful women’s organizations. And I wanted to talk about it. They said, well, their friend had just died of vulva cancer and they’d appreciate that I don’t talk about it. But hello. I’m alive. But so and then I coincidentally found another woman that had the same operation as me eight months previous.

But we both had asked if we could speak with somebody who had the same operation. But they said, oh, ethically, you’re not, you can’t do that. But what we learned is that if she wanted it and I wanted it, you know, we should have been bonded together which we were by by the Forces of the world that we accidentally found each other.

But I think it was a bit, somebody, somebody mentioned that it would be too depressing to connect women up with women because it’s so catastrophic that if we got together, [00:09:00] we would get depressed. But see, this was a male’s opinion. Yeah, exactly. And that’s how it was in the day. And I think we need to understand the history around, you know, the gynecologist and talk to.

taught to protect us. We don’t need protecting. We need the knowledge. We need the information. We need to stop this shame and embarrassment. So from that, I thought there must be others out there. So I placed an advertisement in the woman’s day in the, can we help you line and all these ladies hand wrote me all these ladies letters and the sadness and how the husbands were leaving them and how they, if that would.

Betrayed and I thought this is crazy but I thought it was a conspiracy. Yeah. Must be a conspiracy because what am I getting into here that you know the powers that be say you can’t do that and so I traveled around Australia to meet up with those ladies and it was very very sad to see that well I mean I I’m not [00:10:00] laughing at it.

I laugh because of the The trauma of the ridiculousness that women are out there, even 30 years later, some even dying, and it’s like, who cares? Who cares? And it really saddens me. But, but I live with the hope. I’m like, I’m trying to find that piece of gold that who is it that’s really going to help me take this to the powers that be and have things change and for women’s mindsets to change as well.

And so I began my journey. for listening. I’d set up a woman’s a a not for profit and, you know, but again, nobody was interested in a not for profit for gynecology because it’s just, we don’t go there. So, I so nothing was happening. So I rang Senator Amanda Vanstone back in the day. I rang their office and I said, look, got all these ladies letters, all this stuff’s going on behind the women’s health doors.

And it’s like, [00:11:00] you can’t talk about this. So so they said to have a national day. I said, but how do you do that? And they said, we just declare it. And I thought, well, if it’s that easy, I’ve declared an International Gynecological Awareness Day and those that object, well, that’s just bad luck because I’m going ahead without it, whether you like it or not.

So we set up this Gynae Awareness Day and we ended up getting a little office, office at our women’s hospital. And so we’re able to convince the King Edward Memorial Hospital to celebrate the Gynae Awareness Day, which they’ve celebrated for eight years now. So it’s just a stepping stone, but lots of people are territorial.

It’s like, Oh yes, but we don’t do that. We don’t, I’m just trying to bring everybody together. I remember the NSW Cancer Council, I spoke with one of the ladies who came to Perth and I said, you know, there’s no vulvas.

So I’ve got proof that the NSW Cancer Council were the first organisation to put a vulva [00:12:00] diagram in their brochures and now all the other organisations have, except one, except one. And it’s a research group for gynaecological cancers. And there is no vulva. I’ll say that again. There is no vulva. And I’m told they don’t 

Kylie: A women’s health research group, a gynecological research group that doesn’t have a picture of a vulva in their diagrams.

Kath: I have approached them before and I said, you know, can you tell me why you don’t put a vulva in there? And they said because they don’t get funding for the vulva. But I’ve said you’ve got a vagina there, you don’t get funding for the vagina. But you see, for me to speak out about this, it’s, I feel like I’m stirring the pot.

Kylie: So I was going to ask you though, how common is vulval cancer? 

Kath: Like that’s the thing. It’s not very common. It’s only about 430 women in Australia and not all those women [00:13:00] die.

But let me tell you about pre cancer. 

Kylie: I was gonna ask like how, what are the, some of the early signs and symptoms of V cancer? 

Kath: Okay, well first of all, mine was a lump all be looking for. Yeah. Mine was a lump. And I know I know most women I know who have died of bowel cancer and yet I don’t wanna frighten women because, you know, lots of women have got.

Sclerosis, but it is a risk factor and you need to take on the responsibility. You need to ask your doctor to check your, your vulva. You need to learn the, the the health risks around that. For our 

Kylie: audience listening who might not even know what lichen sclerosis is, what should they be looking for? What should they be concerned about? Because I think, you know, you’re right. We, we don’t tend to, you know, pay attention. And I know, you know, a lot of my audience, they’re [00:14:00] busy, they sort of push through and we tend to just not pay attention the way we should do to those little signs and symptoms that our body’s giving us.

So what should we be looking for? 

Kath: So Ligand sclerosis is an irritation of the vulva, and it doesn’t take much for you to realize that something’s not right. And I know that some people have written to me and they said, I’ve put up with this irritation for years and years because probably because they’re being treated for thrush.

But we cannot point the finger at the doctors there because if there is no funding to teach doctors that an irritation could well be sclerosis. Well, then, you know, it’s up to us as a society to understand and get rid of these stigmas and and talk about it. But I just want to read you this. bit about so you can understand.

It says, thanks for your comments. We appreciate it and recognize the illustration is missing the vulva. We have been trying to find something that is clear and informative, but [00:15:00] we’re also aware that some illustrations may not be appropriate for our culturally and linguistic diverse audiences. We’ve been consulting with our members, our team, and created an effective diagram design that is also acceptable to those in the community.

A designer is booked in to work with us on this soon and I can write back to you once the diagram is published on our site. I was told that 12 months ago. Yeah, right. In the meantime, I know women that have died and it just. It sends a shiver up my spine to think, how long does it take to draw a vulva?

How long does it take, you know? 

Kylie: I’m pleased to report in primary school, when they do sex education, it is an anatomically correct drawing. Yeah. And that’s year six, sex ed. 

 In our school, I can happily say that all the girls and the boys were together. They did separate them but then they swapped. So they [00:16:00] all got the same information, but just not together.

So when they were talking pads and periods and tampons and things like that, and they were all handing them around, they did the girls separately, and then they sort of, we’re talking to the boys and then they swapped, but they all got the same information. 

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Kath: I found the word pudendum in the dictionary in my research and the Latin version of that word says female genitalia, one who should and ought to be ashamed, the shameful part of a woman. So we all call it a vagina. 

Kylie: That’s it. I think that’s the thing. It’s, when we start using the correct terminology, it’s going to break down the barriers.

Absolutely. Less taboo, and we were talking before we hit record that there is a big sort of stigma around women’s gynecological health. We’re really not talking about the way we should do. And I would like to think it’s changing with the generations coming through.

Which is, yeah, which is a great thing, but I think 420 odd women getting diagnosed each year, this is something that we should be aware of and paying more attention to.

Kath: But I need to say that this is not just about the vulva, that was only my [00:18:00] discovery.

I discovered after my cancer that my daughter had polycystic ovaries and endometriosis. And when she was suffering with period pain, I used to think it’s just a period because I didn’t have the understanding and we need to have the understanding. And that’s why I thought with the International Gynae Awareness Day, we can bring all of these issues out, not just one, you know.

Kylie: Yeah, exactly. Exactly. And that’s the thing. And I have conversations with women all the time who have horrendous periods and it becomes their normal. They’re used to it. So they’re not having the conversation. They’re not putting their hand up to go, hang on, this isn’t right. They might’ve been, initially and they get bounced around, they get put on the pill and then, oh, that’s just, you know, the way it is.

You just have to put up with it. So 

Kath: They have to go to work and pretend it’s not happening. But again, it is changing which is very exciting for me to sit back after 30 years, the sort of thing. Well, yeah, there is some changes being made, but how can we charge forward? So I’ve [00:19:00] come up with this undies for better understanding campaign and they’re cardboard cutout knickers.

And we decorate them with leftover bling and material and things and then we’ve got a song that we sing after and it’s called the Gynomite song so it’s ladies to the left, ladies to the right. Don’t forget your Gynomite. We care a lot so spread the cheer to look after what’s down here. Shake it, shake it, shake it.

So we need to have some fun and I do with some of my presentations, I call them Viva La Vulva and I ask the women to stand up and acknowledge they have a vulva and then say Viva La Vulva, let’s celebrate our magnificent body. So I’m not being rude with it on, you know, I’m just trying to break down the barriers, but also.

And, you know, just put some fun in it. I have devised a paper talk which is very simple. The simple language is just one word, one sentence explaining what it is and there it’s got all, all the glory of the ovary, cervix, uterus, and including the vulva.

 I’ve also got another thing that I would [00:20:00] love doctors to have in their office, because my GP has to draw a vulva when she’s explaining whatever. She has to draw it because she’s got a diagram of the ovary, cervix, uterus, vagina, no vulva. So I, I was hoping looking to see if I could find an organization to help a vulva examination, a self Examination because if we taught how to how to check our breasts and you know why not how to teach our vulva and keep an eye out for anyhow I’ll hand it over to you Kylie because I’m talking too much.

Kylie: I was going to say if you’re happy to share a copy of that I’ll pop it in our show notes and then women can then access that on our website. Okay. And how to do that Volvo check. So Kath, thank you for sharing that. And, I think it’s amazing the work that you’re doing. So when is International Gynae Day?

Kath: It’s on the 10th of September. 

Kylie: 10th of September. Beautiful. All right. We will [00:21:00] be promoting that happily. Yeah. And then. What would you say to sort of someone who kind of suspects that maybe she should be investigating further, that she’s noticed that her vulva is feeling dry, she’s noticed she’s feeling uncomfortable in jeans, she’s feeling, she thinks maybe she’s just had ongoing thrush, what would, where would you suggest, or how would you suggest she starts that conversation with her GP?

Kath: Well, first of all, Listen to what I’ve just said and I’m not afraid and I want you not to be afraid and go to a woman’s health center and you ask to say please could you check my vulva because I have an irritation there but it’s about building the confidence within and being brave enough to use the word vulva but by using the word vulva it’s It empowers you.

You know, it’s amazing the changes that will come over when you can just say, acknowledge that you have a [00:22:00] vulva. So I just ask you to make sure you, you follow it up and just don’t put up with it and think, Oh, it’s just thrush. If some doctors might think that. 

Kylie: There’s a lot of women out there who are just treated ongoing for thrush, and it could be sclerosis, it could be bacterial vaginosis, something a bit more sinister like vulval cancer.

So I think, we’re our own best advocates for our own health. So, if we’re not sure about something, we need to push for answers. If we’re not happy with the answers, we need to continue to. Ask the questions, until we get something resolved as well. 

Yeah, and that’s the thing and I think why do we have to tiptoe and be culturally sensitive because women from all cultures have a vagina and a vulva and a clitoris and so yeah so it shouldn’t be part of it it’s sort of like okay we’re talking to a group of women who have, these body parts and that’s just the way it is.

So, yeah, why are we, why are we hushing it up? 

Kath: I had our health [00:23:00] minister speak about my work in Parliament House and he said, he said, I’ve never said it before and I’ll probably never say it again, but I’ve seen Kat Mazzella’s panties. But he was referring to my cardboard cutout baby. So, if he can make light of it, let’s us as women try to make some light of it as well.

Kylie: Absolutely. And normalise it by talking. 

Kath: Yeah. I mean, it’s such a special special part of our body. And what is the putendum done? Is put shame on us. And people might say, oh, I don’t have any shame about it. But you start talking about it and you soon realise that there is a There’s still a lot of stinger out there that needs to be broken.

Yep. 

Kylie: All right. Well, Kath, I can see you are on a mission and doing an amazing job to bring awareness to women’s gynecological health. So thank you so much for coming on the show.

Kath: But I can’t do this on my own. I need others to get behind it. 

Kylie: Yeah, absolutely. You’ve given me some links to some of your work.

So we will put those in the show notes. So [00:24:00] definitely we, this is a conversation we will continue. Okay. Well, thanks so much, Kat. And thanks everyone for listening. 

Kath: Okay. Thank you. Bye.

Kylie: Thank you for taking the time to listen today. You can head on over to the show notes at kyliepinwill.com/podcast where you’ll find all the links. Now, before we go, it would mean the world to me if you’d head on over to your favorite podcast channel, subscribe and leave a review. Don’t forget to share it with your friends.

Then stay tuned for next week’s episode and I can’t wait to see you then.