A woman had part of her clitoris “shaved off” after she was diagnosed with nagging cancer of the vulva – what her doctors initially dismissed as “thrush”.
Toni Williams, 54, first developed a “red, raw” and “itchy” vagina and vulva in 2018, but claims she was misdiagnosed with a yeast infection after several doctor visits.
Desperate, she was eventually examined by an understanding GP who found the area looked like it could be cancerous and soon she was unable to wear knickers due to the soreness she was getting.
She then underwent surgery to shave off part of her clitoris and remove lumps on her perineum, and now, more than two years after her agonizing surgery, Toni is cancer-free but is now battling a potentially terminal skin condition, lichen sclerosus.
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Lichen Sclerosis or LS causes itchy white patches on the genitals and the condition means Toni now never lets her husband see her vagina and she is unable to use the toilet without feeling pain.
Mum-of-two Toni, from Plymouth, Devon, said: “I’ve never let my husband see what it’s like down there, I just can’t.
“We’ve only been married for almost eight years and haven’t been able to have sex for the past four years. There’s just no way. It’s too painful.
“My cancer is gone. I shaved most of the clitoris and removed other parts as well which is sore as hell.
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“I had a couple of lumps – one near the perineum and one on the other side. A lot of people don’t know what’s going on with you. You see a happy person, but inside it’s a different story.
“Everyone says ‘Oh you look so good’ but no, far from it. It’s a terrible condition, I can’t explain to anyone what it’s like every day.
“I’ve never experienced pain like this. You have constant pain in your clitoral hood and it itches like crazy. The perineum and folds of my legs are also bursting, it’s horrible to wear pants.
“It’s just constant, it doesn’t go away. I use a cream that helps a little but it stings. I can pull 10p pieces of skin off me and it’s an open wound.
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“Going to the bathroom is torture. It won’t go away and there are times when it’s worse than ever.”
Toni’s condition began more than four years ago with what she thought was a common yeast infection and she claims she was put on antibiotics but it never went away.
She soon had to beg the doctors to examine her properly – by that point she had progressed to cancer.
Over the next few months, Toni underwent life-changing surgery on her clitoris and perineum, which she is still suffering from.
Toni said: “I had more or less 18 months where every time I went to the GP I was like, ‘yeah, it’s just thrush. Here please’. I tried everything and it didn’t work. I believed everything they told me.
“Then I just couldn’t take it anymore. I went to the doctor and said ‘please, just have a look’. If it was thrush, it was the worst I’ve ever had and it wouldn’t go away.
“The vagina had become very sore inside and out. It was so uncomfortable at work. I was a chef at the time and also worked in a hot environment. You don’t sleep with it at all.
“I saw a doctor once and she was lovely, she took the time to listen and she tried to cut corners. She couldn’t put the swab in because it was so sore. I was literally red and sore.
“She took one look and said, ‘I think it’s all over – I think you have cancer’. It had gotten so much worse. The first surgery I had was to take biopsies, diagnose and cut out small lumps that had popped up near the perineum.
“I went back to my advisor on December 27th. He said everything was fine but there was 0.8mm cancer on the clitoris.
“They either had to take it off 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 off.
“His words were that he had left enough for ‘sexual purposes,’ but trust me, that’s the last thing you ever want. He also had to cut away part of the urethra, then everything was sorted.
“I have been in pain ever since with this condition, which has not yet been fully diagnosed.
“When he examined me, the medical records said he thought it was lichen sclerosus.
Since going under the knife, Toni claims her life is still a struggle as she was forced to quit her job as a chef and struggles with the pain every day.
While her counselor is happy she is cancer-free, she is now in the throes of a mysterious skin condition for which she is still waiting to see a specialist.
Toni said: “I couldn’t wear knickers for the first year. I was just sat around in my nightgown. I’m still very similar in some ways because I can’t get rid of it [the skin condition]. By then it had spread from front to back.
“The cancer was fully treated – he did the surgery. When he first saw me he said I was fine.
“After six months he wanted to fire me. He had given me steroid cream to use twice a day for a week, then once a day, then once every other day.
“You had to take a month off, but the moment I stopped it it came back with a vengeance.
“He submitted a dermatology referral a year ago and I’ve heard absolutely nothing. I called them to ask if I was on their list and they said they had no name for me at all – there was nothing.
“They told me to go back to my counselor and find out what was going on. He then referred me again. My advisor was really good and while Covid was going on none of the cancer patients saw anyone.
“As far as he was concerned, I was cancer free and that was all he was worried about.
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“He was quite open and said he no longer believed it was cancer, that it was LS or anything.”
Toni now hopes that by sharing her deeply personal story, she will encourage other women to speak up for themselves at their GP appointments – and warns many will be “pushed away”.
Toni said: “Ever since I first found out I have vulvar cancer and LS I’ve been trying to make more people aware of it. I’ve spoken to many women about this.
“I’ve always said if you have itching down there and it doesn’t work, please see your doctor. So many people have been pushed away and told it’s thrush.
“I can’t work anymore. I volunteer for four hours once a week and come home in agony, I can’t cope.
“I wouldn’t stop doing it, otherwise you just stay inside and don’t do anything.”
Vulva Cancer UK Awareness founder Clare Baumhauer said: “You should check your vulva once a month so you know what your normal reading is.
“If you have persistent vulvar itching, lumps, or sores that won’t heal, see a doctor.”
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https://www.mirror.co.uk/news/uk-news/womans-clitoris-shaved-away-after-27196426 Woman's clitoris 'shaved away' after doctors dismissed vulvar cancer as 'thrush'