For most of her life, Clare Baumhauer assumed her sore, itchy vulva was normal. "From when I was primary school [elementary] age, I was telling my mum that I was sore and itchy down there, and that it was burning when I went to the toilet," the 45-year-old hospitality supervisor recalls.
"I remember her taking me to see my GP two or three times. He never looked at me, but I was given different creams and none of them helped. Even at that age, I quickly became reluctant to keep going back."
After nearly 40 years of being misdiagnosed with everything from yeast infections to cystitis, early menopause, eczema, and even herpes, in 2016 Baumhauer received a devastating diagnosis of vulva cancer—caused, in her case, by a little-known skin condition called lichen sclerosus (LS).
"Lichen sclerosus is a chronic inflammatory condition of the skin, commonly seen in the vulva and perineum area," explains Professor Dharani Hapangama, a spokesperson for charity Wellbeing of Women and consultant gynecological surgeon at Liverpool Women's Hospital.
"This inflammation can be extremely itchy and sore, especially if the skin breaks down or cracks. Women with lichen sclerosus often experience problems with painful urination and sex," says Dr. Karen Gibbon of the British Association of Dermatologists (BAD). "Affected skin may also change color and become white or pink."
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Although there's limited research on the prevalence of lichen sclerosus, the BAD estimates that around one in every 100 women in the UK is affected—and only around five percent of those cases result in vulva cancer, with that percentage dropping to two percent in younger, pre-menopausal women like Baumhauer. The Association for Lichen Sclerosus and Vulval Health estimates that between one to three percent of women around the world have LS.
There's no cure for lichen sclerosus, so the usual medical treatment is a steroid cream to dampen down the inflammation. However, because LS slightly increases the chance of cancer, patients also require lifetime monitoring.
"The important thing is to know your own normal. If you've got lichen sclerosus, and you're managing it with your low dose steroid cream, that's fine," says Tracie Miles, a cancer information nurse for gynecological cancer charity The Eve Appeal.
"If all of a sudden you get a flare-up, or anything changes, you need to go back to your dermatologist or gynecologist so they can keep a closer eye on it," she explains. "If, with a change to your medication, that flare up doesn't go back to normal, that's when your clinician needs to think about doing a biopsy."
Never having had an LS diagnosis, it's exactly this lifetime monitoring that Baumhauer feels she missed out on. "I know now that I've had LS since I was a child. I've had these white patches from a young age, and I've not seen any other vulvas, so I didn't know that what I was seeing wasn't normal," she says.
"I've also had two babies, I've had smear tests every three years, and no nurse or midwife ever picked up on it." Indeed, by the time something did change, Clare's LS symptoms had been dismissed and misdiagnosed so many times that she didn't see the point in going back to her doctor.
"I must have been seen 30 times over the years, by different doctors, with the same symptoms. Most of them didn't even look at my vulva, I was just told I had thrush [a yeast infection]," she says. "I tried all the tablets and creams, but nothing worked."
When she developed a tear in her peritoneum, Baumhauer didn't bother going back. "I ignored it, assumed maybe it was caused by sex, and thought it'd heal by itself," she says. "I even had a smear test around that time and the nurse didn't say anything—so again, I wasn't worried."
Instead of healing, the tear developed into a small ulcer. "I remember thinking, That's not good, maybe I should go back to the doctors, but then wondering, What's the point? I put Sudocrem on and just hoped it would go away," Baumhauer says.
Within six months, the ulcer had doubled in size and was so painful Baumhauer couldn't even sit down. This time, her GP's diagnosis was herpes. "She told me to go to the GUM clinic, and I was mortified. I'd been with my husband for 25 years," she says.
It was only after seeing her indignation that her GP took another look. "Actually," she said, "it could be vulva cancer." Baumhauer was stunned. After being fast-tracked for a biopsy, she then heard the term lichen sclerosus for the very first time when her gynecologist told her it was probably what had caused cancer.
Since then, Baumhauer’s had numerous operations and more than 30 sessions of radiotherapy, which put her into early menopause. Within a year, her cancer had gone from stage one to three, and spread to her lymph nodes. And, although she's now 18 months into remission, doctors told Baumhauer she only has a 40 percent chance of surviving five years or more.
She's now determined to ensure that more women—and their nurses, GPs, and midwives—are aware of the signs of both LS and vulva cancer. "If I'd been diagnosed with lichen sclerosus as a child, been treated and monitored all my life, I might still have got cancer," she says. "But I definitely would have gone back to my GP much sooner, and the cancer could have been caught earlier."