I had no idea what my vulva was until I was 43 and received a devastating diagnosis

THE word ‘vulva’ wasn’t in Clare Baumhauer’s vocabulary - until she was diagnosed with vulval cancer at the age of 43. 

Clare, 50, from Kent, had spent decades struggling with itchiness, soreness and tears ‘down there’ but it wasn’t until a tear turned into an ulcer that a medical professional finally assessed her properly. 

The John Lewis employee is married to Matthew, 51, a retail manager, has two children, Chloe, 23, and Ben, 18, and even during pregnancy and smear tests, her vulva complaints went unnoticed. 

If they had been, she might have received a diagnosis of lichen sclerosus, a skin condition that often affects that genitals, and is what caused Clare’s cancer. 

Clare says: “I had symptoms of lichen sclerosus from the age of about five.

“I can remember not being able to sit down comfortably, was itchy and sore and I remember my mum taking me to the GP - a male GP - when I was probably about eight or nine years old.

“I was crying in the toilet from pain, it was a burning feeling, like razor blades going to the toilet, but the GP never looked at my vulva, never mentioned anything, said it was cystitis and I was given medication for that.

“As I got a little bit older I was too embarrassed to go back to the doctor, so I kept my symptoms quiet from my mum. 

“In my early 20s I was still getting burning, itchy vulva pain. At that point, I took myself to the GP and again it was a male GP, who never asked to look. 

“I had never referred to it as a vulva either. The first time I heard the word vulva was when I was diagnosed at the age of 43 with vulva cancer. 

“I'd always called it either down there, privates or vagina and those were also the words GPs used, they never used the word vulva either. I wasn't taught it at school. 

“If I tell people I've had vulva cancer, most of the time I get, ‘Where's that?’ And, ‘I didn't know you could get cancer down there’.

“They are the two main things that people mainly say, which isn't surprising because I hadn't heard of either lichen sclerosus or vulva cancer before and because of that, I didn't take my symptoms seriously. 

“I went back to male GPs in my 20s and early 30s and just got told I had thrush symptoms 

“I also treated myself as well using different creams, but nothing really helped much. 

I had a smear test every three years and in that time, nothing was ever picked up, so I'm thinking it must be okay. Nothing serious. 

“I eventually saw a female GP and she was the first one that looked and did a swab and a blood test.

“The swab came back negative to having a yeast infection and the blood test was all fine, so she just put my symptoms down to early menopause and I was sent away. 

“Then I noticed a tear I’d had for about a year, started to get worse. 

“In January 2016 the tear turned into an ulcer and within a short space of about three months, the ulcer got quite big. 

“I wasn't going to go back to the doctor's because I've been so many times, but I went to another female GP who looked and at first said she thought it was herpes. 

“Obviously, I looked quite shocked - I'd been married to my partner for 25 years at that point.