It began with an itch. Just a small one – like the niggle of an ingrown hair. Did I have thrush? A small cut, maybe? Some kind of allergy? Or were my skinny jeans just too tight? One night, I slipped my hand between my legs and right next to my clitoris, I felt a tiny piece of grit.
A skin tag, I told myself, or a tiny cyst. Nothing to worry about. Life went on. I bought new underwear, and the itch subsided. It was probably an irritation, then. But the cyst got bigger, until it resembled a small whitehead, and I started to dread the day that it would burst. I decided that I probably shouldn’t cross my legs in meetings, just in case.
A few weeks went by, and the cyst kept filling. It was tender to the touch, so tender that I pushed away my boyfriend, swaddling myself in our duvet so he couldn’t get close. I took a deep breath, and booked an appointment to see my GP. "It's just a little wart!" the doctor proclaimed, and she wrote me a prescription for a thick, smelly topical cream. I went home and broke the news to my boyfriend. Get help! We’re infected! Another two weeks later, the cream was gone but the bump was not, so my GP dispatched me to my local GUM clinic, where I dropped my jeans in front of several eager doctors. It was prodded, poked and squeezed. More doctors were called. I did what anyone would do in this situation – I freaked out. Did I have Ross' 'thing'?
Nobody could say for certain, but it probably was just a cyst. There was nothing to be done, so I was sent on my way. Yet within a couple of months, it had grown from the size of a grain of sand to the size of a fingernail, and it looked very, very angry. I returned to the GUM clinic, but I left in tears. A concerned doctor took another look and decided that, whatever it was, my 'thing' needed to come out immediately. But then I was referred to a gynaecology department on a 'two-week wait' for suspected cancer.
I wish I didn’t know the pain of having local anaesthetic injected into the folds of my vulva, or the smell of my own genitals being cauterised to stop the bleeding. I had never had surgery before, and I let my anxiety get the better of me. Paralysed with fear at the thought of going to sleep and never waking up, I opted to have the operation (a "minor procedure", according to a young surgeon who definitely did not have a vulva) under local anaesthetic. One advantage of my decision to avoid general anaesthetic was that I was able to leave hospital just one hour after surgery; one major disadvantage was that to leave the operating theatre, I had to walk through a puddle of my own blood.
The wound healed quickly and relatively painlessly, which is apparently due to the youthful properties of the twentysomething vulva. Three weeks after my initial surgery, I went back to hospital for a follow-up appointment. I thought that maybe someone might be able to tell me what was really wrong – and that's when I was told I had vulval cancer. Er, what?
Vulval cancer is one of the five gynaecological cancers, and it’s probably the least known. According to Cancer Research UK, around 1,300 cases of vulval cancer are diagnosed in the UK each year – that's more than three a day. While most of these cases are found in women over 60, I've been told that vulval cancer is affecting more and more younger women. Although research suggests that vulval cancer accounts for less than 1% of all cancer deaths in females in the UK, Cancer Research UK also reports that since the early 1990s, vulval cancer incidence rates have increased by a sixth (17%) in females in the UK. There are few known causes (I have been told that I’m just unlucky), but studies suggest there is a link between HPV and vulval cancer. Cancer Research UK also pinpoints that smoking can increase your risk.
Contrary to popular belief, vulval skin can be affected by the same types of skin cancers that you might find on your shoulder, stomach or thigh. The best way of removing the cancer is to cut it out. As Cancer Research UK also reports, around seven in 10 vulval cancer patients receive major surgical resection as part of their cancer treatment. I’ve had multiple operations since my initial diagnosis in order to remove recurrences of the cancer, but the last surgery was my toughest: I had an anterior vulvectomy, where the top of my vulva was removed completely – and I lost my clitoris.
It took a while to sink in. One day in the shower, I plucked up the courage to reach my hand a little lower. That’s when I finally realised what had happened to me. I’d been stitched up, literally. I had been robbed of my sexuality, and I wanted to scream it to the world. Yet my experience was so intimate that even my family were unable to discuss it. Rumour spread, and some people even doubted that I had been ill in the first place. My cheerful veneer at parties with friends masked the fact that I cried myself to sleep almost every night. Only my boyfriend knew the truth. I felt ugly and deformed, and my sex drive had completely disappeared.
It took months to find the energy to start lifting myself out of the funk. I sought out counselling, and managed to strike gold – a psychosexual therapist who could treat me on the NHS. I joke about my boyfriend and I being in sex therapy, but the truth is that our therapist has done an amazing job of helping me to regain trust and confidence in my own body. I’ve still got a long way to go to reach the sex life I want, but I’m much more optimistic that I’ll get there one day.
I wish that my story could end there. Sadly, just as things were getting back on track, I learned that my vulval cancer had spread to other organs in my body. I’ve been reminded the hard way that skin cancer is never just skin cancer. Even if you cut it out, it can come back, and it can spread. My cancer is now incurable, and one day it will kill me.
My advice? Please get to know your vulva. Learn what's normal for you, look out for anything new or different – persistent itches, changes to the colour of the skin, moles, or lumps and bumps can all be signs of vulval cancer. If you have any concerns about your vulval health, be sure to raise them with your GP. It's important to be persistent. You know your body best, so if your symptoms don't go away after a couple of weeks, or new ones develop, return to your doctor and get them checked out. You are the best advocate for your own health.