A MUM was forced to have part of her clitoris ‘shaved off’, after her cancer symptoms were repeatedly dismissed as thrush.
Toni Williams, 54, first became ‘red raw’ and ‘itchy’ down there in 2018 – a key symptom of vulvar cancer.
After claiming she was misdiagnosed with a yeast infection after several trips to the doctor, she was eventually examined by a sympathetic GP.
Mum-of-two Toni, from Plymouth, Devon, said: “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.
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“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.
“Once I’d seen one lady doctor, and she was lovely, she took the time to listen and she tried to take swabs.
“She couldn’t put the swab inside because it was so sore. I was literally red raw.
“She took one look and said ‘I think it’s gone past anything – I think you have got cancer‘. It’d got so much worse.”
Over the next few months, Toni underwent life-changing surgery on her clitoris and perineum to remove cancerous lumps.
Her consultant told her “there was 0.8mm of cancer” on the clitoris.
Toni said: “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.
“He had to cut away part of the urethra too, then it was all sorted.
Cancer-free but still in agony
“My cancer’s gone. I’ve had most of the clitoris shaved away and other bits taken away as well which is bl**dy sore.
“I had a couple of lumps – one near the perineum and one on the other side.”
More than two years on from her agonising surgery, Toni is cancer-free but is now battling an incurable skin condition, suspected to be lichen sclerosus (LS) – that causes itchy white patches on the genitals.
The causes are not known, but are thought to include previous damage to skin in the area, and the immune system mistakenly attacking the skin.
The incurable condition also makes sex, urinating, pooing and erections agony.
Toni now never lets her husband see her vagina and she is unable to use the toilet without being in agony.
She said: “I have never let my husband see what it’s like down there, I just can’t.
“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.
“A lot of people don’t know what’s wrong with you. They see a happy person but inside, it’s a different story.
“Everyone says ‘oh, you look so well’, but no, far from it. It’s an awful condition to have, I can’t explain to anybody what it’s like on a daily basis.
“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 hasn’t had a confirmed diagnosis of lichen sclerosus, as doctors also believe the mystery condition could also be eczema.
Toni was forced to quit her job as a chef and struggles to cope with the pain each day.
She hopes that by sharing her deeply personal story she will encourage other women to advocate for themselves at their GP appointments – warning many are ‘pushed away’.
Toni said: “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.
“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.
“I wouldn’t stop doing it, otherwise you just stay indoors and don’t do anything.”
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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.”
