A mum has been left unable to have sex for years after developing vulval cancer – that was repeatedly dismissed by doctors as simply ‘thrush’.
Toni Williams first developed a ‘red raw’ and ‘itchy’ vagina and vulva in 2018 but claims after several trips to the doctors, she was misdiagnosed with a yeast infection.
Eventually, the 54-year-old was examined by a sympathetic GP who revealed the area looked like it could be cancerous.
Soon after, Toni, who is from Devon, had surgery to ‘shave’ off part of her clitoris and remove lumps on her perineum.
More than two years on from her agonising surgery, Toni is thankfully cancer-free but is now battling an incurable skin condition, suspected to be lichen sclerosus (LS) – that causes itchy white patches on the genitals.
‘I have never let my husband see what it’s like down there, I just can’t,’ says Toni.
‘We’ve only been married almost eight years and for the last four years we haven’t been able to have sex. There’s just no way. It’s too painful. My cancer’s gone. I’ve had most of the clitoris shaved away and other bits taken away as well which is bloody sore.’
The skin condition that Toni now has means she has a daily battle with agonising pain and discomfort.
‘It’s an awful condition to have, I can’t explain to anybody what it’s like on a daily basis,’ she says.
‘I’ve never known pain like it. You’ve got constant pain on your clitoris hood and it itches like mad. The perineum and the creases of my legs split open too, it’s horrible to wear trousers.
‘It’s just constant, it doesn’t go away. I’m on a cream that helps for a little bit but it burns me. I can peel pieces of skin off me about the size of a 10p, then it’s an open wound.
‘Going to the toilet is agony. It doesn’t go away and there’s times when it’s worse than ever.’
Toni’s condition first started with what she believed was the common yeast infection thrush more than four years ago. She says she took antibiotics but it never cleared up.
Toni explains: ‘I had more or less 18 months where every time I went to the GP, it was, “yeah, it’s just thrush. Here you go”. I took everything possible and it wasn’t working. I believed everything they said to me.
‘Then I just couldn’t cope any longer. I went to the doctor and I said, “please, just have a look”. If it was thrush, it was the worst I’d ever had it and it wasn’t going away.
‘The vagina had become very sore inside and out. At work, it was so uncomfortable. I was a chef at the time and working in a hot environment too. You don’t sleep at all with it.’
It was a game-changer to finally find a female GP who listened to her concerns and examined her properly.
‘She couldn’t put the swab inside because it was so sore. I was literally red raw,’ says Toni.
‘She took one look and said, “I think it’s gone past anything – I think you have got cancer”. It had got so much worse.’
Toni’s first round of surgery was to take biopsies, diagnose and remove the lumps.
‘I went back on December 27 to see my consultant. He said everything was good but on the clitoris there was 0.8mm of cancer.
‘They needed to either take it away completely or shave it. I asked him to take the whole thing away because I didn’t want it coming back, but he shaved it.
‘His words were that he’d left enough for “sexual purposes”, but believe me, that’s the last thing you ever want.’
The surgeon also had to cut away part of Toni’s urethra to get rid of all the cancer.
Since then, though, Toni has been in constant pain with this mystery skin condition that hasn’t been fully diagnosed yet. She is still waiting to see a specialist.
What is Lichen sclerosus?
– Lichen sclerosus is a skin condition that causes white, itchy patches on the skin that may bleed if scratched
– It can cause the vulva to shrink and affect the clitoris or labia minora
– It can cause pain during sex, urinating or pooing, and erections can be painful
– It is incurable but treatment can sometimes help relieve symptoms
– Treatments can include prescription steroid cream or surgery
– It is most often on the vulva, vagina, anus, or foreskin or end of the penis
Since going under the knife, Toni says she has been forced to quit her job as a chef and struggles to cope with the pain each day.
‘For the first year, I couldn’t wear knickers. I was just sat round in my nightdress,’ says Toni.
She now hopes that by sharing her deeply personal story she will encourage other women to advocate for themselves at their GP appointments.
‘Since I first found out I had vulval cancer and LS, I’ve tried to make more people aware. I’ve spoken to loads of females about it,’ she says.
‘I’ve always said if you’ve got itchiness down there, and it isn’t going, please go see your doctor. So many people have been pushed away and told it’s thrush.
‘I can’t work any longer. I do some volunteering once a week for four hours and I come home in agony, I can’t cope.’
Founder of vulval cancer UK awareness, Clare Baumhauer, said: “You should check your vulva once a month so you know what your normal is.
“If you have any persistent vulval itching, any lumps or ulcers that don’t heal then see a doctor.
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