Looking back, I put a lot down to ‘it’s just the joy of being a woman’. I’d had thrush on and off for years and had always just brushed it off as one of those ‘things us woman have’. So when I noticed a small lump on my vulva, I didn’t think too much of it at first. But then it started to grow. 

I went to my GP and was told it was a skin tag and nothing to worry about. I tried to put it to the back of my mind, but something didn’t feel quite right. When I later went for my routine screening, I mentioned it again. Once more, I was reassured it was probably just a skin tag or maybe scar tissue from when I had my daughter 16 years ago. This was August 2024. Still, it didn’t go away. 

By Christmas 2024, it had become bigger and extremely painful. That’s when I really started to feel that something wasn’t right. In January, I went back to my GP and was told it was a Bartholin cyst. I was given antibiotics and told that if they didn’t work, I’d be referred to a gynaecologist but be prepared to wait! 

The antibiotics didn’t help. When I returned, I was told I’d be placed on a waiting list that could take up to four months. By that point, the pain was constant and it was affecting my everyday life. 

I felt stuck and honestly scared. 

Thankfully, my mum stepped in and offered to pay for a private appointment. I’m so grateful she did. At that first appointment, the consultant said she thought it looked precancerous and suggested removing it. 

After the procedure, I was told the words that completely changed everything: it was cancer. The following week was blood tests and scans to make sure it hadn’t spread. 

I was then referred on to another gynaecology specialist in Cornwall (we live in Devon) and suddenly I found myself navigating a world I knew absolutely nothing about. Before this, the only gynaecological cancers I’d ever really heard of were ovarian and cervical. I hadn’t even heard of or understood what vulval cancer was – I didn’t even properly know the difference between the vulva and vagina. That’s something I look back on now with a mix of naivety and frustration at how little awareness there is and how I hadn’t been educating myself. 

During that time, I found support online. I followed the Gynae Geek, bought her book, and engaged with her content on Instagram. She’s been incredible in raising awareness and helping women understand their bodies better. 

After my private diagnosis, I transitioned back into NHS care. My consultant worked across both sectors and discussed my case with an NHS multidisciplinary team. Because Plymouth didn’t have the specialist services needed for vulval cancer, I was referred to a gynaecology team in Cornwall. 

At first, that really worried me. I didn’t want to be treated so far from home. But honestly, it turned out to be a blessing. The team there are amazing – so knowledgeable, compassionate and supportive. I couldn’t have asked for better care. 

Even so, the practical reality was hard. Each appointment meant up to a three-hour round trip on a good day. It took over my whole day every time. It was decided that I needed more surgery in Cornwall. My husband came with me and while I was staying in hospital, he was staying in B&B. The hospital was very strict with visiting so even though he was in the same town as me he couldn’t physically be with me. This added extra stress to an already overwhelming situation. My daughter was 17 at the time and had to stay at home with mum. Being away from her, and from home generally, was incredibly difficult. There’s a huge difference between knowing your family are just down the road and knowing they’re hours away. 

I am lucky that they caught it when they did as it was on the cusp of spreading. I now have to go back to Cornwall every 3-4 months for a check up. This has been good but I don’t think that initial fear will leave me anytime soon. I hope as the years go on and I remain getting all clears I will feel more comfortable but I still feel tense and hyper vigilant on a daily basis.  

Telling people about my diagnosis brought another challenge. Almost everyone’s first assumption was breast cancer — it’s the one cancer people tend to know. Vulval cancer rarely comes into the conversation. And finding out your local hospital can’t treat you only adds to that feeling of being overlooked. 

Looking back now, one of the hardest parts is wishing I’d listened to my body sooner. When I’ve spoken about this with my consultant since, she’s really passionate about the need for better education for GPs, especially in areas like the South West. 

Vulval cancer is more commonly diagnosed in older women, which can make it even easier for symptoms in younger women to be dismissed. That worries me. Not everyone feels able to question a doctor or push back when something doesn’t feel right. It’s so easy to assume they must know best. 

But I’ve learned that we know our own bodies better than anyone else. 

If something doesn’t feel right, trust that feeling. Keep asking questions. Keep going back. Don’t be afraid to advocate for yourself — even when it feels uncomfortable. 

Resources like The Eve Appeal, and people like Gynae Geek and the introduction of Jess’ Rule are so important. They make information accessible, open, and honest, without any embarrassment. Social media can be overwhelming and misleading at times, but it can also be a powerful source of support and connection. Hearing from other women, sharing experiences — it makes such a difference. 

I’ve even shared these resources with my daughter, friends and colleagues. That’s how strongly I feel about it. Everyone deserves to understand their body, to know what’s normal for them, and to feel confident speaking up if something changes. 

Because that voice — your voice — really matters.