Beyond the Surface: Vulva Health & Awareness

In 2016, Clare Baumhauer was diagnosed with Lichen Sclerosus and stage 3 Vulval Cancer after being misdiagnosed for 38 years. With no prior knowledge of either condition, she became determined to raise awareness and advocate for better healthcare responses. Following 6 years of remission, their cancer returned in April 2023, along with dVIN (pre-cancer). After surgery, clear margins were obtained for the cancer, but not for the dVIN, leading to close monitoring.

As an advocate, she represents patients with Lichen Sclerosus and vulval cancer, serving on the UK Dermatology Clinical Trials Network and PAVE group. Clare co-founded Lichen Sclerosus & Vulval Cancer UK Awareness and runs the largest support group for these conditions with over 10,000 members. She also raises awareness through social media and contributes to online learning for healthcare professionals.

To learn more about Clare see HERE

Transcript -Automatically Generated

Welcome to this episode of Menopause Uprising with me, your host, Catherine O'Keefe. So today, why it is imperative, absolutely imperative, I want you to start doing a monthly vulva check. I'm chatting to Clare Boomhauer, who is a patient representative and scoliosis and vulva cancer in the UK. Clare has been a forerunner in raising awareness.

on the importance of a vulva health and our chat today talks about Claire's story from the age of five when she was undiagnosed with lichen scoliosis and her journey from there to unfortunately when she developed vulva cancer. I hope you enjoy the episode and please do remember to rate, review and comment on whichever platform you're on.

You're listening to, you can get all Claire's details and information in the show notes.

Claire, thanks so much for joining me today. And I, I know this is a conversation I've wanted to have with you for a long time. Just, I think to bring more awareness again, to another aspect of women's health that, you know, I guess we're just. there isn't enough awareness, there's not enough discussion, um, about, um, out there.

But I guess just to start us and just to give our listeners a sense of it, would you like to share your own story? Yes, of course. Thank you for inviting me to help raise awareness of both conditions that aren't heard of, um, even with health professionals. Um, I was diagnosed, um, in 2016 when I was 43 with, um, lycancerosis and vulva cancer, both conditions I'd never heard of before.

Um, so I was quite shocked to get told I had two conditions I hadn't heard of, let alone one being a cancer and also in the area because I'd never used the word vulva. Um, I'd always used the word vagina or down there or private. So that was like three sort of, um, Uh, things to hear that I've never heard before.

Um, but looking back, um, I've had symptoms of lichen sclerosis since about five. And my symptoms back then were constipation and very itchy and sore. Um, when you're that young, you know, you quite often have to sit on the floor and when you're like a school reading and assemblies. And that was when, um, I couldn't sit still because it was so sore and itchy.

And I was always called a fidget. I was always told off by my mom and teachers for not keeping still. Um, it wasn't until about the age of about eight or nine that, um, my mom started to notice there was something wrong because she could hear me crying in the toilet because I was having, um, Uh, cuts and tears.

As soon as you go to the toilet, the urine just stings like acid. So I would scream and cry. Um, I would say I was fine. I didn't want to go to see a GP. I kept putting her off and eventually she made me go. Um, I think I was about nine then. And, uh, you know, she didn't really know what my symptoms were. Um, only the fact that it was painful when I went to the toilet.

Um, so we saw a male GP. Um, he never asked to look, um, never really asked about symptoms from what I can remember. And I didn't say anything because I was quite embarrassed. Um, so my mum just said that, you know, it burns when she goes to the toilet. So straight away he said I had cystitis. So I was sent away with, um, treatment for that.

Which helped a tiny bit, but not much because I was so embarrassed. I just hid it then from my mum and I didn't want to go back to see a male GP again. Um, and unfortunately that, you know, I couldn't. Quite often you only get one chance, doctors, because it is quite a hard condition. Um, symptoms are embarrassing, you don't always want to go.

So by the time you do go, you've only really got that one chance. So for me, that was mine. And because he never looked, he never asked other symptoms, um, there was an opportunity there to get diagnosed. Because getting older, I got more embarrassed as a teenager and, you know, I didn't want to go. So I did sort of ignore the symptoms and they went away by themselves till my early 20s and then they came back again but it was just itchy and sore.

Um, I used to self treat, I used to Google and think, wonder what it was. I used to try Vagisil, Sudocreme, oh everything you can think of to help. Nothing really did. Um, I did go back to the GP again, two different GPs, male GPs in my 20s and both times again, they never asked to look. Um, I never said, can you look?

Cause obviously I was embarrassed anyway. Um, and they said it was fresh, gave me, um, treatment for that, sent on my way. I used it again, a couple of days, maybe helped a little bit, then came back. So I just kept self treating myself for Frush for many years. I had two children in that time. Um, I had to have cesarean sections because of other complications.

Um, but again, nothing was ever said. I've had eight cervical screening smear tests over those years, all with, now I know, all with classic signs and symptoms of LS again, no nurses ever said anything to me, I'm thinking everything's fine because they're looking and, you know, having these tests, you think that it does more than they do.

So again, I sort of wasn't that worried. Um, and then again in my late thirties, um, it sort of came back quite a bit more and it was, it was really affecting the quality of life. So I went back to the GP again and this time it was a female GP and she actually was the first one that actually asked a look and the first one that took a swab.

I didn't even know you could take a swab. To get, to find out about frosh. Um, that came back as negative, didn't have frosh. So, I actually think I probably never have had frosh before. Because, you know, the only symptoms of frosh I had was, would have been, would have been itching and burning. So I don't think I did have it.

Um, she then sent me off for blood tests, thinking maybe it could be diabetes related. Again, that came back clear. So she just sort of like shrugged her shoulders and said, I don't know, it could be early menopause and just sent me on my way. Never even gave me any, you know, help for if it was early menopause symptoms, which, which it wasn't, but you know, no help even still.

So again, off I went, just carried on using what I could to try and help. Um, I then noticed, um, I had a tear. Which is the same area you have when you have a baby and they tear. So I thought it would heal by itself, but it didn't. I had that for a good, good year or two. Again, I even had a smear test when I had, um, well, we believe I had cancer at the time and it wasn't picked up.

Um, I had a smear test, everything was fine, so I'm thinking it can't be anything serious because it would have been picked up in that. Um, and then in the January of 2016, I noticed that the tear had changed. It had gone into like an ulcer. And I thought, oh, I don't wanna go back to the GP again. Just keep saying it's fresh.

And I just didn't go. Um, and then within three months it doubled in size. It got so painful that I just couldn't sit. So I thought, I'm gonna have to go back again. I saw another female gp. She again asked to look and she said it was herpes. And I was quite shocked by that. 'cause, you know, I'd been with my husband at the time, 25 years.

Um, she told, told me to go to a gum clinic, which I wouldn't have done. So if I had gone with that advice and gone home, I wouldn't be here today. Um, but luckily she saw the sort of shock on my face and she looked again. She said, actually, it could be something called vulva cancer. I'm going to send you for a biopsy, two week pathway.

And she looked at me and goes, please go. If you don't get an appointment in that two weeks, please come back. Um, so that was quite scary getting told that. So. Luckily I was sent for biopsy within 10 days and within a couple of weeks I was called back in and was told then that I had obviously vulva cancer and lichen sclerosis.

Um, because of how long it had been left it had managed to spread so I had stage 3 vulva cancer. During 14 months, I had lots of treatments. I won't go into all that now, but, um, I had, um, I've had five surgeries. I had radiotherapy twice. Again, all the side effects have been life changing, putting me into instant menopause as well.

So having to deal with, you know, all those symptoms all at once at 43, as well as the vaginal atrophy and lymphedema of the genitals, all obviously making that area, you know, three times worse. Um, but. You know, dealing with all that and seeing how easy I was misdiagnosed and how many chances over those years that I had to get a diagnosis, but I found out the nurses aren't trained in vulva conditions and yet they've got to look at the vulva to get to the cervix, you know, a lot of GPs unfortunately don't get great, you know, training in women's conditions and might not, you know, They think quite often you're too young to have both vulva cancer and, um, laryngosclerosis, but this too young needs to be taken away because you can be in the age right.

Um, just because it's more common in the older age, you know, it doesn't mean it's not going to happen, you know, because it does. Yeah. Because of all that, I suppose, it just made me so angry that No one's heard of them, you know, people are getting misdiagnosed. I'm not the only one that's been misdiagnosed, especially with Lyme and Sclerosis.

So, I wanted to do more. So, you know, I do things like this to try and raise awareness. You know, we have support groups. Um, just trying to get, you know, more people aware and to check the vulva. Yeah. I think Claire, it's through you and Jane Lewis, actually, that I probably got into the whole habit of doing the monthly vulva check.

And it is something I've talked about and encouraged people, you know, to get into that. Because we, we're very conscious about doing the breast check, right? But, um, we don't tend to, and I think we often shy away from actually even just doing that. looking at the vulva, whereas it's so important to do it, isn't it?

It is, but just really, you know, you need to know what it looks like so that you know when something changes. Because obviously I never really looked, so when I did, I, I had, I had all the symptoms, which I'll go through in a minute, but Because I didn't know what vulvas really looked like, because it's not something that you see often, let alone your own.

So I didn't know that wasn't right. I didn't realize that I shouldn't be that white, you know, or I shouldn't have, you know, so much change is happening. And because of that, I wasn't aware of what was going on. Um, you know, I just didn't really look. I knew I had some like, um, eye tears or I had like blood blisters and things, but that was from scratching.

So, you know, I wasn't really aware that. The signs I already had were so obvious of lichen sclerosis and changes. So that's why, yes, it's important to get to know your normal and then just check monthly and then anything that is not normal for you, get checked out. And do you think you had the lichen sclerosis back when you were five, five and six?

Yes. Yes. Talking to doctors about it. Yes. I had all the classic symptoms and this, you know, by the time I was diagnosed, how, bad it had got, um, because the symptoms can be. You don't have to have all these symptoms. That's where a lot of doctors and us think we haven't got it. The most common are itchy and white, sort of silvery skin, thickened patches.

We don't have to have those. They're just the most common ones. But I had white, my whole vulva was white and silvery, thickened patches. I had tears, I had blood blisters. I had, um, small fissures. I had, Clitoris was buried by this time. I'd lost half my labia. So all that, all those changes, I didn't, I wasn't aware because I wasn't looking and didn't realize what it meant to look like that.

Yet all those doctors, nurses, you know, had two children. I'd seen it. I'm sure they would have thought that doesn't look right. But again, they're not trained, so they're not aware. Yeah. Gosh, that's From such a young age, like having that at five and six, and, you know, feeling like that constant burning. I mean, that must have been so difficult.

So difficult. Well, I think They're realising now, because They say it isn't as common, obviously, in children, but, and they often used to say that you can grow out of it, which can happen, but, um, I think what they're thinking now is you don't necessarily grow out of it, it just goes, goes into remission, a sort of teenager.

Oh, I'm not sure. Okay. Yeah, and it maybe comes back later on, and they're still not 100 percent sure whether it's autoimmune or not, they think it is, um, but they, you know, could be hormone linked, also trauma, um, linked as well. So, yeah, it's, it's. Not a great deal of research has gone into the diagnosis to know exactly what it is.

But, you know, when people are diagnosed, they are normally menopause age, which is why it's most common in menopause age. But I've always believed that it's because it takes that long to get diagnosed. You know? It's maybe it takes that long for you to actually take yourself to the GP because you're maybe you're older and You're more aware of your body or you're more confident in telling the doctor, you know Or because you are older now and you're talking about menopause symptoms Maybe that's how it's talked about and you end up getting diagnosed, but I just think it's just you know there are more and more in our group now that are joining that are in their 20s 30s 40s you know and and all those that are diagnosed much older they look back and think actually yeah i've had these symptoms for many years like me so although it's more common it's more commonly diagnosed i believe in the older the older woman but not necessarily only affects children and older women it's just any age it can just Like you say, going to remission, um, you know, different things cause it to flare what you do, what you use, stress.

So, you know, it's going to be different throughout your life anyway. And do you, do you, is there any stats around it in relation to how many women are impacted in the UK? Again, that changes. Some have said one in a hundred women. Some have even said one in 30 women. The problem is it's just not recognized, is it?

It's just unrecognized. Condition is class as a rare condition, but many doctors now saying it's not rare. It's just rarely diagnosed Yeah Diagnosed as well and probably a little bit more. So now because of because you know of all All the, um, awareness, um, besides my doorbell going off, um, because of all the awareness of menopause that we're getting, um, people are getting misdiagnosed now as vaginomatrophy when it's actually lachynosclerosis because of the symptoms of similar and vice versa.

And also obviously many have had both. I have both now. So I think there's more diagnosed now because I think more, um, luckily our GPs are getting more training or, you know, more knowledge in menopause side of it. I think they're starting to, you know, talk more about vaginal atrophy that I think more are getting diagnosed.

Yeah. And do you think for any, let's say you're doing, you, you start and I hope anyone listening does start to do a regular, um, self check, vulva self check. So Clare, what are you looking for? You're, you're, what are you looking for when you do that check? Well, for Larkin's sclerosis, really, you're just looking for, um, um, um, um, um, um, For any tears that don't heal, um, any, any, you know, any lumps, ulcers, skin color changes.

It's not normally red. Red is normally, it's because it's something else, vagina atrophy, or, or could be, um, you've got a flush, or it could be dermatitis, or it could be something you're using is causing the redness. It's not normally red. If it's red, it's because you're rubbing, scratching, whatever. Um, so that's really why it thickens skin areas.

It can be in the anal area as well, so it can be around there. Um, tightness, tightness as well. The vagina opening can get tight sometimes. Um, the clitoris can become buried as well and become less sensitive. Some even more sensitive. There are quite a lot of symptoms. Um, you know, um, And you don't have to have all of them or the common ones because some are obviously asthmatic anyway and don't have any symptoms and get diagnosed by accident because I was having a biopsy for something else.

Um, it's just really getting to know your normal and anything that's there that wasn't there before and you're still there after two to three weeks and just see your doctor. Um, when it comes to vulva cancer, again, there are similar symptoms. Um, they quite often are a lump, um, an ulcer. Um, a sore patch.

These are all things that are still there after a few weeks. Um, some get itching, some have bleeding, although it's not necessarily internal bleeding, it's bleeding from the vulva area, but they're not sure where the bleeding's come from because you just obviously see it on the tissue paper only, but not everyone does get any bleeding.

Um, but again, you know, it's just anything that's not normal for you. Um, and quite often lumps can be cysts, but it's still worth getting it removed or biopsied because, you know, The youngest we have in our support group, vulva cancer, is 17. She was diagnosed with, um, 17. And in the UK, um, the youngest, according to, um, cancer research is, uh, zero to four years old.

So someone's been diagnosed in that age bracket in the UK. That's why you can't, yes, it's extremely rare, but it still could happen. So don't ignore that, you know, that, that lump, if it's there, just get it removed, you know, cause it might not be, it might be vulva cancer because although, um, Lycosis was what caused my vulva cancer.

There are several types of vulva cancer. So I had um, Screamer cell carcinoma, which is the most common one, but there are others that aren't linked to lichen sclerosis. They are HPV related. So you get pre cancer cells or there could be melanoma, the vulva. So there are several types and so they're not all associated with lichen sclerosis, but those that are diagnosed, um, that have lichen sclerosis, not all the times, most of the time it's like me, they didn't even know they had lichen sclerosis.

So the lichen sclerosis was left untreated for so many years that it had more of a chance to turn into cancer. Oh, okay. So that's, that's, that can, it can be that that happens, that if the lichen sclerosis is untreated, it can develop into cancer. Yes, they again the stats on that are anything from two to sort of seven percent of those with lichen sclerosis It can go on to cause vulva cancer and research was proven in 2016 and by an Australian dermatologist that using regular steroid treatment, which is the The gold standard treatment for Lyme conspiracies can lower the small cancer risk if you use it regularly.

Once you get your symptoms under control using a potent steroid, and then to continue to use regularly to help stop the flares, stop, help, stop and slow down progression and to lower the cancer risk. Um, the UK actually, which I'm involved in the pearls trial, which is a new trial starting now in the UK, which, um, will take probably about five years now before we get all the results from it all.

But there. We've got, um, two arms, one where they've got patients with lichen sclerosis that will be using steroids only as and when they have a flare and the other group will be using it as maintenance to see again, what's best will have results from that as well. But yeah, but at the moment, most dermatologists will say to use steroids regularly.

It can be different frequency and strength, depending on what your symptoms are. Um, but yeah, but it's just, you know. There was a research paper out recently saying those that were diagnosed with vulva cancer due to lichen sclerosis that to carry on using steroids after, um, the recurrence of vulva cancer is lower.

So again, that's proving steroids are helping. Um, so you just make sure that, you know, you're using the right one for you because there are quite a lot of steroids. And did you say your treatment for the vulva cancer, that put you into instant menopause? Yeah, because I had pelvic radiotherapy. So straight away, it was within weeks.

Um, and they didn't warn me of that actually. They said there was a risk of lymphedema, which I ended up with, but didn't mention menopause. So I actually thought for a little while that my menop, uh, my cancer had come back. Because all the symptoms I was getting just all hit me all at once. Okay. And it was caught.

Yeah, when I went to see my, um, specialist nurse, she straight away said that sounds like menopause. So I was referred luckily and then put on HRT, um, and that made a big difference straight away. So yeah, it's just, again, those with ulcer cancer, they have, um, treatment which can cause early menopause, I'm always told, so they're suffering a bit longer than they need to be.

And I think like we'd see a lot of that in terms of, you know, many women who go for surgery and it results in early menopause. Now it is improving, but we've a lot of work to do yet in terms of just understanding that, you know, you've come out of that surgery, you know, if your ovaries have been removed and it will, you know, you are then into cliff edge menopause.

And I always kind of say, you know, spontaneous natural menopause, and I know it can be challenging. But it's far less challenging than going into early menopause because of the intensity of the symptoms. Was it then that the vaginal atrophy kicked in or had that already started the vaginal dryness? Yeah, it's hard to tell.

I think I was obviously because you know meeting yourself and Diane on instagram I didn't realize how many symptoms there were to um, menopause, you know, just a few. Just a few. You know, maybe your periods might stop and a bit of a hot flush. But yeah, so I wasn't aware of how many symptoms there were. Um, you know, so it wasn't until that I'd done the high end checklist and I actually got my husband to, to tick it as well.

Because I think someone close to you can see symptoms and signs that you can't. Yeah, he did tick the mood one about six times, but yeah, but I, I just, I didn't even put that together really with vagina atrophy and the symptoms because it was hard because obviously I've had pelvic radiotherapy, which damaged my vulva and my skin.

I've had all those surgeries. Um, it also caused, um, lymphedema in the area. So yes, now vagina atrophy and obviously, you know, the rest of the menopause symptoms, it's hard to tell what's doing what. So I just literally treat them all with what I can and hope for the best and like, but it's hard to tell what symptoms or what sometimes.

And does that impact, you know, all of that in the pelvic area? Does that, does that impact in relation to, um, sexual health? Like, have you found, kind of, would you have, you know, vaginal dryness? You can have, uh, spotting, you know, painful sex. Would that have been more acute for you or was it the case at all?

Yes, because yeah, because again, with even having pelvic radiotherapy actually shrinks the vagina, uh, uh, channel anyway, so, you know, you have, you're given dilators and, and, um, lubricants to help with that anyway. So yeah, so it's, it's a big impact. It just, you know, just here today, for example, I'm sitting, I've actually used InstaGel, which is a numbing cream, because I know I'm going to be sitting for up to an hour.

It's, I've been too much discomfort, not just for the John atrophy, but liposcosis, obviously I had recent surgery just last year on the vulva because unfortunately my cancer did come back. So all that together, it's just, yeah, everyday life is just difficult. Just walk in, sit in, you know, and when you've got obviously multiple.

things all aimed at the same area, you know, it is difficult and it impacts. It's just trying to find, you know, what treatments work for you. I was given obviously Vegefem, um, to start with. And then obviously, uh, my GP unfortunately didn't want to give me the cream as well to apply to the vulva area.

Because, um, his words were, I think, I don't want to give you, uh, give you breast cancer. So, luckily, I was, I knew that wasn't true from following all year on Instagram. So, I had to trick him, really, and say that I didn't want Vagifilm any, uh, yeah, Vagifilm anymore. I wanted to use the cream to insert, so then I could insert and apply outside without his knowledge.

So, I just done that, and, and, you know, that improved straight away. So, it proved it worked. And isn't it like, isn't it, it's frustrating, um, uh, and it's annoying, Claire, isn't it? That, that kind of, you're bringing that self management on yourself because we still need more awareness, um, across all. uh, medical spheres in relation to so many aspects.

Lycosis as well, because even Lycosis treatment is steroid cream, but you know, quite a lot of doctors, you could see a GP, a gynecologist, dermatologist, and you can all get told slightly different with all of them. So again, that's something that I'm in the process of, uh, of, uh, doing something with some researchers and some doctors to get a website together, which gives all the correct information for LS on health professionals and for us so that we're all getting the same information and all told the same.

It's so confusing, especially support groups are great, but you know, when you're getting told, Oh, I'm only told to use it once a day, I'm told to use it twice a day. And yeah, the long information about steroids, because you know, like in sclerosis, isn't the same as an eczema or psoriasis. But because of a lot of GPs are only aware of those skin conditions, they tend to treat a less similar to that where you can't because it's different.

So, yeah, so trying to get information, it's, yeah, it's hard and, you know, raising awareness and seeing actually, it has made me realize how bad women's health is and the information that we get. Oh God, we could, we could chat for hours on that one. Couldn't we? I think, look, it's, it's like, it is, it's simply appalling.

Like when there are so many conditions that, um, need more awareness, uh, drawn to it, you know, and I think that's where we've got to keep, keep going. We've, this is why all the advocacy work that so many people are involved in is so important, um, to draw, to draw attention, you know, when that class is rare as well, that makes it harder because people aren't interested because they are rare, say money can't get money for research because they're rare, you know, but, you know, like, I suppose now they're saying isn't rare, but, you know, it's not talked about enough because obviously it's embarrassing as well.

Yeah. So, you know, you've got, you know, you've got people that. They find out eventually after telling family and friends they have it, that their family and friends have got it. But because they've not discussed it, they don't know. And when they finally decide to talk about it, they realize somebody they know's got it.

So really it's this, you know, hopefully, both lichen sclerosis and vulva cancer will be like breast cancer is now. And that is just talked about and awareness all the time. But, you know, until we all talk about it, um, you know, it's just not going to happen. And I think it is that like, you know, we see a lot here, but you know, doing your breast check yourself, check, et cetera.

We don't see it around the vulva, uh, doing that monthly check. And, you know, even just talking to you today, today, it's a reminder. I really need to go back onto Instagram and remind people again of why it's so important. I mean, you're talking about two minutes, you know, uh, just maybe lie back in the bed, put your foot up on the toilet, use a mirror.

And just become familiar with the vulva, which is the external part. And just so you know what it looks like. And so you can see those changes. Um, when, when they have, it's frustrating because there's so many opportunities to raise awareness, whether it's NHS or, you know, or doctors, but they don't, you know, when you think about cervical screening, they do a smear test and they do campaigns about it.

And yet. They don't include, and now it's even changed, now it's a HPV test. So there's, there's several HPV cancers, including vulva cancer, and they don't mention it. And yet it's just, easy awareness, you know, even with the letters that go out, just having the information of the other cancers will be helpful.

So that, so that you've heard of them and know of them, but they're not, I've tried to, I've spoken to NHS England and they're not interested. It's just, it's rare and it's all about cervical cancer, but it's just frustrating. There's so many, Chances to raise awareness of vulva cancer or lichen sclerosis with different, you know, skin conditions, for example.

They don't help when they're talking about skin conditions or talking about skin cancer. You know, vulva cancer is a type of skin cancer and they still don't include checking your vulva, even the NHS or doctors. You know, they put up posts, um, about parts of the body to check for skin cancer, but they miss out the vulva.

And yet, vulva melanoma, as well as, you know, as well as, you know, vulva cancer, um, you know, it's just, it's so frustrating that there's ways that it could easily be added to awareness and it just goes over the head, they're just, it's rare, they don't care. So that's what I find frustrating. And it could be a simple step.

Couldn't it, when you're having your smear, that it becomes just the step before the smear, that the check is done by the nurse or whoever is performing it, just to see, is there anything different? But, and I think then again, I think a key part of that, Clare, is it's back to us being, uh, Empowered and informed that we actually know, okay, just at a minimum, I'm just going to get used to looking so they understand what my vulva looks like.

Um, I know you mentioned that the, the vulva cancer came back and it was, was, was it the same or did you have to go through the same? Yeah, it was, it was, it was a different side of the vulva, so my, my cancer, the tumor was in the perineum, which for those that aren't aware, that's sort of six o'clock, sort of, of o'clock, right at the bottom, in between your vulva, sorry, your vagina entrance and your anal, so in that gap there is a perineum, that's where my tumor grew, um, so that was partially removed, um, and then it came back, but on the other side.

So it was first, uh, luckily I am seen regularly by a consultant dermatologist that didn't like an, uh, a patch area. And so she sent it off for a biopsy and it came back as devine, which is a pre cancer, which is associated with Lyme and sclerosis. So not HPV linked, um, but Lyme and sclerosis linked. So, um, they want to remove it straight away because when it's an 80 percent chance of turning to cancer.

Whereas usual VIN, um, which is the pre cancer, uh, can take up to 10 years or not at all. So whereas the VIN is, uh, within two weeks, I was sent in and it was, the area was removed. They ended up taking more than they needed to, because I think he was a bit concerned. So he did take quite a bit in the end and luckily he did because they then found cancer.

So they did get, um, Clear margins on the cancer, but unfortunately not the devin, because it started to go inside the vagina, so he didn't go that far. But so it was left this time to just heal naturally, um, secondary intention. So, um, they didn't stitch or anything. So that was, that was really hard. It was about three months of it leaking.

It was, it was hard going, but I knew it was the best option for me because, you know, having skin grafts or stitches would have made the area too tight. And now, even before, whenever I sit down, I can spit open. And because it was stitched before, so this time it wasn't. Also it's easier to spot any, any recurrence because they haven't done any skin grafts or anything.

So I knew it was a good way for me, but it was, yes, it was hard. It was three months of, of, you know, hard healing. Um, but that's healed now. And just recently actually, I had my MMR and CT scan and was given the all clear again. Oh, brilliant. Oh, I'm so glad to hear that. My first year of remission once again and hopefully, but he did say that, um, that was my fifth surgery.

And he did say that it probably won't be my last. So it's not then, um, if it comes back, it's more when it comes back. So it's just being vigilant. I'm seeing every three to four months. So, you know, hopefully it'd be caught early enough to be removed again. Yeah. Well, that's good. You're kind of having that oversight.

And just on that, so say you have someone who, you know, maybe they find that there's, there's something not right. And I don't know, let's say they feel that maybe they don't want to talk to their GP or maybe that they feel their GP isn't as informed as they like them to be. What other steps? Is it that you go to a dermatologist or what would you recommend?

Yeah, normally your first steps are to go to your GP, and I know it's really hard at the moment, especially in the UK, to get an appointment, but you have to persevere. Um, you know, if you're having problems, speak to the practice manager, just get an appointment with a GP. If you're not confident in what they say, what they do, then just, you know, say you've got the right to be referred to a specialist.

Which normally is a dermatologist. Okay. Um, hoping that it's a consultant dermatologist so they know more. Um, there aren't many vulva clinics in the uk. Um, the waiting list is, is extremely long, um, up to a year, um, even longer because obviously you've got dermatologists are seeing those with skin cancer as well, so they get priority, so it's making the lists even long for them as well.

So there is a long list, so hoping that you get a GP that knows. Um, and as you know. done their, you know, training on myocardial sclerosis, um, then you can see them and they can, um, check you. You can see them, make an appointment yourself to see them regularly if you need to. They'll give you steroid cream, whatever.

Um, if, you know, if it's something else where they're not sure about and they want to send you off for a biopsy, that'd be the two week, uh, cancer pathway rule, which is slightly longer than that. Mostly now, but then you're sent off and you normally see a gynecologist, could be a dermatologist, who will then do a biopsy.

Um, if it is difficult to see your GP and you're having symptoms, especially of lichen sclerosis, um, then you can go to a sexual health clinic. Um, quite often, they're quite knowledgeable of lichen sclerosis and again can, um, refer you and, you know, they can help as well. But it's just about advocating for yourself, really.

You've just got to, you've just got to accept that, you know, You know, the symptoms aren't going away. You need to be seen. Um, unfortunately, the same as menopause, um, a lot of people going private and looking in their area and finding, um, uh, consultant dermatologists that, you know, knows a lot about lichen sclerosis and, you know, going down that route.

But even that's taking a bit longer now because more are going private. Um, you know, Afford to save up to see, see one to start with. Um, just do make sure you do your research and make sure, you know, 'cause you can now, you know, with Google, you can find out their clinics and what they do, what they specialize in and, you know, and then, you know, maybe if you can afford to go down that route, it's normally around about 200 pounds for the first consultation.

And then, you know, you can be referred then NHS after that. But yeah, just, just, you know, please don't ignore the symptoms, first of all. Yeah. Um. See your GP. If you're not happy with their response, you know, or any doctor's response, get a second, third opinion. Just keep on doing it because, you know, if I maybe persevered more, you know, if I'd told the doctors to even look, you know, I might have been diagnosed a lot earlier than I was and wouldn't be in the situation that I am today.

Yeah, it's a hard one though, isn't it? Because like, when you're so young, it is, and like I see even, you know, women who, who are in their fifties and they find it difficult to have a conversation with their doctor about vaginal dryness. So, you know, I mean, look, all we can hope with Clare is that all the conversations that are now happening, Will help people, um, you know, will help women to feel more empowered that they can have those conversations.

And I think as you rightly said there, it is pushing for the conversations here in Ireland. Your first step is most definitely, um, your doctor. And I think I, as I always say, look, it's. Your doctor has to be, it has to be a collaborative, supportive relationship at any stage in your life, but it becomes so crucial from perimenopause on.

And, you know, if you feel that that's not the case, well, that's really where you just need to look at that relationship and is that doctor right for you? But really, then your referral tends to be from the doctor to a dermatologist, um, et cetera. So like anything, there's always waiting lists, whether private, public, obviously public.

Way longer, but I think the most important thing is, is knowing what the symptoms are, doing that self check and advocating for your own health is so powerful. There's help out there as well. So obviously there's, there's, you know, there's our support, but it's also the BSSVG, which is, um, either doctors can, um, join and become a member to get training and help as well as there's stuff on their website as well.

You know, if you see that one. I put any details in the show notes so that people can look at it and kind of check, you know, follow your own page on Instagram and whatever other platforms. And then, and hopefully keep us abreast too of the website that you're working on. That sounds fantastic. So, um, let me know about that when it comes up and we'll definitely, definitely share it.

I'm clear. Thanks so much for sharing your journey and, you know, thanks for the amazing advocacy work that you are doing because I sometimes feel Feel you're a lone ranger in a quiet terrain, which I totally get. I think myself and Diane fully understand that one in terms of the menopause space. But now, you know, there's much more conversations about women's health and we just need that to, we just need that to continue and to keep growing, but thanks so much for joining me today.

Thank you, Catherine, for helping to raise awareness as well. So that's some journey, isn't it? I honestly can't imagine being five years of age and having those really challenging symptoms. But I hope you took away some information from today's episode and most importantly, I really do hope and I would love to encourage you to start becoming familiar with vulva.

As we discussed, you know, once we know what normal looks like, then we can understand what isn't normal. Do have a look in the show notes for all of Claire's information and you can follow her on the many social media platforms below. And also just to mention, when we look at menopause, There's many aspects to it.