I Was Diagnosed With Vulva Cancer at 27. This Was the First Symptom I Noticed

Louise, 43, a Pilates instructor from London, first learned she had vulva cancer at the age of 27, before developing another form of the cancer 15 years later. She speaks to Glamour UK’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 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 incentivized, 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 burned-looking edges, and 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, so it was a complete surprise.

They told me that it would need to be urgently removed, so 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 is 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 coin-size gaping hole in the top of my thigh. It got infected, and it was really nasty—my husband had to clear it out, and I ended up back in the 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 noncontagious, 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 so 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.

Due to my previous cancer, I’m heavily monitored by the NHS [National Health Service]. I would regularly go for checkups, and they would also check the lichen sclerosus for any growth that occurred, often taking biopsies, so I was already in a preventative mode, which is fortunate. The skin kept getting thicker and thicker and then eventually, I was diagnosed again. [While Louise had the same type of squamous cell cancer of the vulva, HPV independent, both times, they presented differently.] The first episode looked like it was “burning” inward, which is why it was so aggressive—that form can go inside your body like a root and travel. The more recent episode was growing outward like a weed, so you could get it more easily. It was more like skin growing on skin. Of course, over the years I’ve tried everything to manage the lichen sclerosus. I’ve tried the steroid creams I was prescribed, but I’ve also tried to find natural solutions. I’m a Pilates teacher—I eat really well, I move really well, and I’m mindful. I’ve tried no gluten, no dairy, CBD oil, all this different stuff, but the lichen didn’t really go.

My NHS consultant had done a biopsy as usual, then I got a phone call a couple of weeks later out of the blue, the day before Christmas eve in 2022, asking me to book in for an MRI scan. I was literally winded. I asked, “Why do I need an MRI scan?” They didn't know. The communication was mismanaged. Luckily the consultant had given me her contact details, and I emailed her straight away. She called the next day and told me, “I'm really sorry, I wasn't expecting this at all, but it is cancer.” Prior to that, they had picked up VIN [a.k.a. vulval intraepithelial neoplasia, a pre-cancerous condition that means there are changes to certain cells in the vulva that are not cancerous but could potentially turn into cancer at a later date. This is usually a gradual process that takes well over 10 years.]

At that point, I didn't know if it had spread or not. I was told I had the cancer back, but I hadn’t had any scans or results. Of everything in my cancer journey, the not-knowing over that Christmas—and all the intrusive thoughts that come with it—was the hardest thing to deal with. We were having my whole family over. We had a ski trip planned, and it was two weeks before I was able to get in for more investigation. My husband and I didn’t want to worry everyone else without knowing the extent of what we were dealing with, so we decided to keep it to ourselves until we knew the severity of it. We went skiing as a family [Louise now has three boys aged 16, 14, and 12], and I just woke up every day with this feeling of concrete on my chest. You’re like, oh my god, I can’t breathe. Am I going to live to see my children grow up? I was thinking about all the psychological stuff I’d want to do to prepare them. Once I got back, I had the MRI and CT scans, and thank goodness, it hadn’t spread, and I could share the news.

I went to a new gynecologist, John Butler, who is medical director of The Lady Garden Foundation, at the Royal Marsden—a world-leading cancer center—and felt immediately comforted by the fact that he knew what he was doing. My husband came too. He’s very technical, so he took loads of pictures and was there zooming in on an iPad (I have to laugh). I had the operation to remove the cancer at the start of 2023. There were two areas: one was growing right over my clitoris and the other was just to the left. Dr. Butler created a horseshoe excision over the sides, the top around the clitoris, and down a little bit on the other side. A lot of the inner part has gone, but he built up a little bit of tissue at the top to make it look like a clitoral hood. He did a really good job.

I wasn’t sure about how much sexual feeling I’d be left with, and to be honest with you, that is secondary when you’re thinking about getting rid of cancer. But I did still think to myself, “I do kind of want that back at some point in my life.” The clitoris is a very deep nerve—the clitoral hood is just what you see—but those nerve endings do come back. I've definitely got feeling. I wouldn’t say it’s like it was, I’m not as sensitive as I was before, but I have about 65% sexual feeling, which is good. I think if I was a woman who was being newly diagnosed, or was about to go into this operation, I would want to read a story like mine to know it’s okay. You can still have sex. You can still feel—not the same, but that’s okay. I didn’t have a lot of the severe treatments, like chemotherapy and radiotherapy, that others have, so I don’t know if I qualify to say that. But it helped me to think: I will get through it, and it will be good again.

During my recovery I got another infection, which was so nasty, but I was able to be active again quite quickly. You have to listen to your body. I think because I’m a Pilates teacher and I'm quite body aware and I move a lot, that helped the recovery. I’ve got three beautiful boys to go run around after and the best boy, my dog, so these things give you that impetus to get up and out.

Having done this journey, I think what I’d want other women to know is to follow your instincts. If something’s not quite right, listen to that inner voice. You’ve got nothing to lose to go and get it checked. The worst case scenario is it’s a waste of half an hour. Don’t be embarrassed, and even if you are, don’t let that stop you from going—that feeling is fleeting and your health is more important. Treat yourself to a vulval investigation, then get yourself a coffee and a cake after. It’s an important part of self-care.

I also think it’s really important that we know our bodies. I’ve had more than one person say to me, “I don't know what my vulva looks like,” or “how do you check?" I think the best advice is to grab a mirror. I talk about it candidly with my friends—it’s just like any other part of us that should be looked after.

I’m also very open and honest with my children. Luckily they saw that I recovered and I’m okay. When I told them I was doing this interview today, they said: “That’s amazing.” They know it’s important to share awareness.

As for my relationship with my body, I’ve always been very comfortable and familiar with it. However, I’m definitely more alert to it now, especially because the cancer came back. I’ve still got to be vigilant.

Having cancer in your vulva changes your sexual feeling—it changes you physically and mentally. After the diagnosis and the operations, you’ve kind of got to transition back from being a patient and get back to feeling yourself again.

I do think with these things, they don’t have to just happen to you. You have control over how you react to a situation, and I’ve always looked for the positives. As for where I’m at with my vulva? I feel strongly that I’ve got to look out for her. She’s been through the wars, but I don’t love her any less. It’s like anyone, if something happens, they’re not damaged. We’ve changed and evolved together, we’ve come out the other side, we’ve got the bandages, but we’re still here, and I'm able to live a long, healthy life. For that, I feel really lucky.

This story was originally published in Glamour UK.

The Lady Garden Foundation launched its new campaign recently at the RHS Chelsea Flower Show, encouraging people to check their own “lady gardens” with their Vulva Care Guides.

About The Lady Garden Foundation
Since launching the foundation in 2014, The Lady Garden Foundation has donated over $2.6 million toward The Royal Marsden Cancer Charity. It has funded research projects, diagnosis and treatment equipment, and much more, all dedicated to improving the lives and outcomes of women with gynecological cancer. The charity’s cancer awareness campaigns aim to increase women’s knowledge of the symptoms of the five gynaecological cancers (ovarian, womb, cervical, vaginal, and vulval)—knowledge that will help women to understand their own bodies and ultimately save lives. The Lady Garden’s University Gynae Education program reached over 300,000 students this year, providing them with the knowledge, awareness, and language to feel confident speaking and advocating for their own gynecological health.