Lorna’s Journey
After being diagnosed with lichen sclerosus in her 30s, the last thing Lorna expected was for it to develop into vulval cancer, despite knowing there was a 5% risk. But when she developed a lump on her inner labia, she went on to be diagnosed with vulval cancer at the age of 44.
“Just over two years ago, in March 2023—when I was 44 years old—I was diagnosed with vulval cancer. My clitoris was literally trying to kill me. But before I get into the gory details (and the ham baguette analogy) that's not really where my story starts.
To get the full picture, I have to take you back about nine years before that…
[Insert wavy-flashback effect here]
In 2014, when I was about 35, I was diagnosed with something called lichen sclerosus. Yup, I had no idea what it was either, and I was a pharmacist. There are also plenty of GPs, gynaecologists, nurses etc that are clueless about it as well.
Basically, lichen sclerosus is an autoimmune condition that mainly affects the vulval skin (though some people get it in other places too), and its symptoms include white patches, skin fusion and insanity-inducing itching. It's massively under diagnosed—often mistaken for repeated bouts of thrush—and I now suspect that I may have had it since I was a girl.
Throughout my childhood, I suffered in silence and shame with a terrible itch that quietly drove me round the bend. That's obviously bad enough, but the thing is, if I'd have been diagnosed and treated for lichen sclerosus then I may never have got cancer at all.
So, if you're reading this, and it's making you wonder if you might have it, do your research and go see your GP, armed with all the information you can gather. It could save your life.
When I received my diagnosis, the gynaecologist gave me a leaflet which I read cover to cover (I'm a nerd like that), and amongst other things, it informed me that I had a 5% risk of vulval cancer. I mentally stored that information away, but I didn't take it too seriously because I was young and the risk was low.
So, I took my steroid cream gratefully—telling absolutely no one about my highly embarrassing diagnosis, besides my husband and my parents—and went on my merry way, secure in the "fact" that there was no way that vulval cancer was ever going to happen to me, obviously…
That is, until I discovered a lump on my inner labia in August 2022, and it forced me to reassess my assumptions.
The last thing I wanted to do was admit to myself that I might have vulval cancer, let alone say these words out loud to my husband or my GP, but after quietly sitting with the terror all by myself for a bit, I pulled up my big girl pants and did what I knew I had to do.
When I finally got my GP appointment through, she assessed the lump, and two days later, I was in the gynaecology clinic having a biopsy done. I don't know if you've ever had a needle inserted into your clitoris, but trust me, it made me cry like a baby, long after the local anaesthetic had kicked in, purely from the shock of it.
Afterwards, I put the whole ordeal out of my mind until the consultant's secretary called and told me it wasn't cancer. Phew. But they booked me in to see the gynaecologist for a follow up a few weeks later in the November. At that appointment, I was informed that the pathologist had queried whether there were some pre-cancerous cells present. The gynaecologist checked me thoroughly, and though they didn't see any evidence of any pre-cancerous cells, they arranged six monthly checks just to be sure. I left that appointment reassured.
A month later, however, in the December, a new lump appeared, again on my inner labia, not far from the previous biopsy, site. It was just before Christmas, and the last one had been fine, and I didn't want to be a bother, so I left it until the new year. When I saw my GP, she prescribed some antibiotics and booked me in to see the gynaecologist again. They removed the lump and sent it off for another biopsy, and I put it out of my mind. Again.
There was not a single part of me that thought it would be cancer… Until I had a call from the consultant's secretary. This time, there was no assurance that it wasn't cancer. And she booked me in to see the consultant the next day.
That's when I knew for certain what I was going to be told. I had vulval cancer.
My husband and I went to the appointment together, and they confirmed it. It was the most real and most surreal moment of my life. There were lots of emotions I was processing but one of of the many feelings swirling around inside me was:
"Trust me to get this one."
Like, this was sod's law at its finest. If I had to get cancer, why couldn't I just get one of the normal ones?
Telling the kids and my parents was going to be one thing, but how in heaven's name was I going to break it to the in-laws?
Fortunately, my wonderful husband broached that one, and I've since become accustomed to talking about my fanny not just to them, but to anyone else who'll listen…
You're welcome, random strangers of the internet.
Before I got vulval cancer, there were very few people who knew I had lichen sclerosis, but nowadays, I'm much more familiar with "airing my dirty laundry in public" in more ways than one.
It's been quite a journey though, learning to talk about my vulva. My mum (hi, Mum!) wasn't particularly open about these things. When we were on a family holiday as a kid, my dad meaningfully asked Mum how she was doing, and I thought she was dying. Turns out she was on her period. I didn't realise until years later.
I can't claim to have been much better with my daughter. And if I hadn't have got vulval cancer, we might have carried on along a similar vein.
But when we broke the news to the kids, I was actually amazed at how brilliant they were about it: supportive, positive, oh, and not at all grossed out. Not even a little bit. They were more worried about me, funnily enough.
As we talked about everything, I apologised to my kids—told them this hadn't been the plan—and my son said, "Erm, I don't think anyone plans to have cancer, Mum." And I laughed. We all laughed. It broke the tension, and laid the foundations for how we'd handle this ****ing disease…
And it reminded me that I had no place feeling bad for upsetting their safe, secure worlds.
Why do we as women (in particular, but by no means exclusively) feel so responsible for other people's happiness / peace / security etc etc etc?
Anyway, if you're out there, reading this, going through cancer and feeling bad that your treatment is an inconvenience / makes you feel like a burden then just stop.
You didn't plan this. And there's no way to unplan it either. It just is.
But just so you don't start beating yourself up for feeling bad—which is obviously equally silly—my family weren't the only ones I felt like I was letting down. I'd also just started a new career as a screenwriter. I'd jacked in my very sensible job as a pharmacist to chase my dream. And after a long, hard road, I was finally getting there—my very first short film was about to be shot by a fantastic and dedicated cast and crew—and my surgery was scheduled slap, bang in the middle of the planned shoot.
The bloody cancer wasn't just messing everything up for me. It was messing everything up for every-bloody-one else as well.
I told the director (hey, Oz!) that they should go ahead and shoot without me. You don't really need a writer on set. In fact, we usually get in the way… but when Oz asked me how much I wanted to be there on a scale of one to ten… I couldn't pretend that the answer was anything other than ten. It was my very first short film. We'd all worked so hard to turn it into a reality, and I didn't want to miss it for the world.
That made Oz's mind up, and the shoot was cancelled.
Surgery was booked for the April, and filming was rescheduled for six weeks later, when I'd fully recovered. The team (hey Guy and Jet!) were amazing. And it felt like I had something concrete to focus on after.
The surgery itself went well. A horseshoe-shaped wide local excision was done on my inner labia—basically removing all the "ham" out of my "baguette"—but the nerves associated with my clitoris were saved. And, besides the haphazard shave job and the fact that my flaps looked like they were doing a Daffy Duck impression, the pain was fairly well controlled on paracetamol and codeine. I was officially on the other side. I could focus on getting better.
Healing took time, but thanks to the Vulval Cancer UK Support Group on Facebook, I had a lot of helpful advice to get me through. Top tips included:
If your sentinel lymph nodes have been removed to check for spread—like mine were—pants dig into the wounds, so they were an absolute no no. I basically wore a bra and baggy tube dresses day in, day out. And nothing else.
Use a portable bidet / peri bottle when going to the loo to ease the pain and keep the area clean to prevent infection. I took it everywhere. It did get questions, but it was always worth the painful agony of watching the person wish they'd never asked…
There were mixed reviews on donut cushions, but I wouldn't go anywhere without mine. Any time I forgot to use it, I quickly remembered as soon as my ass made contact with the chair.
The absolute worst part of recovery, though, was when I got cellulitis. I was actually trying to clean the sentinel-node stitches (note to self, leave them alone), and I made my left side bleed. A day or so later, I came down with a non-specific fever. The rash across my groin didn't appear until a day after that—when I'd been on nearly 24 hours worth of IV antibiotics—and so they added in the "Domestos" of antibiotics to clear it up. I was getting pumped with so many drugs that my veins hardened, and they needed to re-site the cannula more than once.
I was in hospital for four or five days, but it felt like an eternity.
And when I was finally discharged, I was back at square one in terms of my recovery, with barely enough energy to shuffle to the toilet and back.
But I had my film shoot that I absolutely had to be better for. I'd thought a six-week recovery period was a bit of overkill when we rebooked the shoot, but it turns out I was only really normalish.
With the energy to cope with a normal day…
I really wasn't prepared for how full on the shoot was:
driving five hours to London
three full-on 12-hour days of lugging stuff around
sleeping on a different bed (or to be more accurate, one bed, one very luxury blow up mattress and one sofa) each night
the looooooooong drive back home
I *may* have fallen asleep while sitting on the sofa during filming on more than one occasion…
But it was just the most fantastic experience. The cast (hey Tamzin, Gary, Mark and Amit!) and crew (too many to mention!) were just so brilliant. And I cannot explain how incredible it was, seeing my words transform from black pixels on a white computer screen into something so utterly magical.
Since then, my little film has taken me round various film festivals, including one in Hollywood.
Not being dead is definitely working out so far, but it's not been quite the same story for other women like me, diagnosed at the same time, at a similar age, with the same stage cancer. Some have barely had a break between surgeries over the last two years.
I'm one of the lucky ones.
It's not been easy seeing them go through so much more pain, trauma and heartbreak. There's a sort of survivor's guilt that I've experienced which is hard to explain. My suffering with them wouldn't make their suffering any less, and yet… the unfairness of it all doesn't sit right with me.
Another guilt I've had to try and deconstruct is the thought of my daughter possibly having to go through all this one day. Thanks to our newfound openness, we got her checked out, and she definitely doesn't have lichen sclerosus right now, so her risk at the moment is zero. And if she did end up developing it, I know she'd be better equipped to make sure she got the treatment she needed to help prevent it turning to cancer.
And maybe, after reading this mammoth article (sorry!), you might be better equipped to prevent it from happening to you &/or the people that you love.
