Louise, 43, a Pilates instructor from London, first discovered she had vulva cancer aged just 27, before developing another form of the cancer 15 years later. She speaks to GLAMOUR’s Elle Turner, via The Lady Garden Foundation, about her diagnosis, treatment and life post-cancer.
I was 27, my son was about nine months old and I felt a spot on my vulva. I was uncomfortable in my jeans and I didn’t want to have sex with my husband because of it, but I thought: it’s just a spot, it will go away. He was obviously incentivised like “babe, go and get it seen”. We wanted to carry on with ‘marital relations’, so I went. It’s funny, I love that we can laugh about that now.
I was seen within six weeks of it first appearing. I was very fortunate that the spot had been bothering me. It was an ulcerated blackened area with burnt-looking edges. When I went to the doctor, she told me straight away, “that doesn’t look right, we need to get it checked out.” She was very urgent with me. I had it biopsied very quickly and they found out it was a very aggressive form of vulva cancer. Older ladies get it but it was almost unheard of for a 27-year old girl to have it. It was a complete surprise.
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They told me that it would need to be urgently removed. I had surgery and they ended up removing my left labia minora [the inner lip of the vagina] and kind of sewing the left side together. After they removed that whole area, they still weren’t confident they’d got clear borders [when every trace of the cancer being removed]. The cells can travel if they don’t get clear enough borders, and they were worried the cancer may have spread to my groin lymph nodes [we have different clusters of lymph nodes around our body which help clear infections, but they can also transport cancer cells around the body] – so they wanted to remove my groin lymph nodes on both sides to investigate.
I went back into the hospital for more surgery, and they removed both nodes which sit at the very top of your thigh-groin area on both sides. The great news was that there was no cancer there. I was very fortunate – I didn’t have to have any chemotherapy or radiotherapy and they were confident they’d caught it. After that operation, I had a really hard recovery. With the lymph nodes removed, I was leaking lymph fluid for days. On top of having a young baby that I was looking after, the wound on my right node popped open. I had a 20 pence-piece-sized gaping hole in the top of my thigh. It got infected and it was really nasty – my husband had to clear it out, with me ending up back in hospital with an MRSA-type infection. I’ve still got quite limited nerve sensation down my right thigh because of that infection. But the cancer was no longer there, and that was the main thing.
While all of my regular smear tests have come back clear, I do think it’s important to mention that I’ve suffered with a skin condition on my vulva called lichen sclerosus my whole life. [Lichen sclerosus is a skin condition that causes itchy white patches on the vagina or other parts of the body. It’s non-contagious and it can cause thickening of the skin, scarring and tightness]. I didn’t really talk about it or admit it to anyone. It would get itchy and uncomfortable, but it flared up, then calmed down and I just kind of ignored it. I thought maybe other women have it, which is why it’s important to talk about. Doctors now know there is a soft link between lichen sclerosus and vulval cancer. In December 2022, 15 years after my first diagnosis, I was diagnosed with vulval cancer again, and this more recent episode I feel could have been linked to the condition.