Mother, 54, who had part of her clitoris 'shaved off' to treat vulva cancer reveals it's left her in 'constant agony' and unable to have sex with her husband
- Toni Williams, 54, from Plymouth, Devon, first had raw and itchy vagina in 2018
- She claimed that doctors misdiagnosed her with a yeast infection
- But eventually was diagnosed with vulval cancer and had surgery
- Now has incurable skin condition suspected to be lichen scelrosus
Toni Williams, 54, from Plymouth, Devon, first had a 'red raw' and 'itchy' vagina and vulva in 2018 but claims that doctors misdiagnosed her with a yeast infection.
The mother-of-two, who was unable to wear knickers because of how sore she was, was eventually examined by a GP who revealed that the area could be cancerous.
She had to undergo surgery soon after to 'shave' off part of her clitoris and remove lumps on her perineum after being diagnosed with vulval cancer.
- Toni Williams, 54, from Plymouth, Devon, pictured on her wedding day eight years ago with husband Andrew, first had a 'red raw' and 'itchy' vagina and vulva in 2018 but said that after several trips to the doctors, she was misdiagnosed with a yeast infection
- The mother-of-two, pictured now, who was unable to wear knickers because of how sore she was, was eventually examined by a GP who revealed that the area could be cancerous, undergoing surgery soon after to 'shave' off part of her clitoris and remove lumps on her perineum after being diagnosed with vulval cancer
She never lets her husband Andrew see her vagina and is unable to use the toilet without being in agony.
Toni added: '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 bl**dy sore.
'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.'
- More than two years after her surgery, the 54-year-old, pictured on her wedding day eight years ago, now suffers with an incurable skin condition suspected to be lichen scelrosus (LS), which causes itchy white patches on her genitals
Toni said that she is always told she 'looks so well' when she feels far from well in reality and is in a lot of discomfort on a daily basis
- The mother of-two, pictured now, said that the perineum and the creases of her legs split open, adding that it is 'horrible' to wear trousers
- Toni, pictured on her wedding day, said that she has often peeled pieces of skin off that are the size of a 10p and sometimes are an open wound
'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. It doesn't go away and there's times when it's worse than ever.'
The 54-year-old's problems began with what she thought was the common yeast infection thrush more than four years ago.
Toni claimed that she was given antibiotics but it did not clear up and she was desperately pleading with doctors to examine her.
- The 54-year-old said that she has had to give up work as a chef as she is in so much pain every day
- Toni, pictured on her wedding day, said that she had been referred to a dermatologist by her consultant but nothing came of it and she was not on the list and she was then referred for a second time
- The 54-year-old does some volunteering once a week for four hours but added that she comes home in huge pain
Toni explained: '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.
- The 54-year-old, pictured with her husband, said that she hopes by sharing her story she will encourage other women to advocate for themselves
- Toni said that since surviving cancer and developing LS she has spoken to other women about it to try and educate them
What is vulval cancer?
Cancer of the vulva is a rare type of cancer that affects women.
The vulva is a woman's external genitals. It includes:
Most of those affected by vulval cancer are older women over the age of 65.
The condition is rare in women under 50 who have not yet gone through the menopause.
Symptoms of vulval cancer Symptoms of vulval cancer can include:
a persistent itch in the vulva
pain, soreness or tenderness in the vulva
raised and thickened patches of skin that can be red, white or dark
a lump or wart-like growth on the vulva
bleeding from the vulva or blood-stained vaginal discharge between periods
an open sore in the vulva
a burning pain when peeing
a mole on the vulva that changes shape or colour
Source: NHS
'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.
'The first lot of surgery I had was to take biopsies, diagnose and cut out little lumps that had come up near the perineum.
'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.
'He had to cut away part of the urethra too, then it was all sorted.'
She said that her skin condition has not been fully diagnosed yet but that doctors think it is lichen sclerosus.
Toni added that he said in letters he thinks it might be eczema as well.
The mother-of-two said that since having surgery she has had to quit her job as a chef and struggles to cope with the pain every day, with life a 'battle' for her.
Toni said: 'For the first year, I couldn't wear knickers. I was just sat round in my nightdress. I'm still very much the same in some respects because I cannot get rid of [the skin condition].
It had spread by then, from front to back. 'The cancer's all been sorted - he's done the op. At first when he saw me, he said I was okay. After six months he was going to discharge me. He'd given me steroid cream to use twice a day for a week, then once a day, then once every other day.
'You had to have a month's rest but the minute I stopped doing that, it came back with a vengeance.'
Toni added that since her surgery her consultant put in a referral to dermatology a year ago but that she has heard nothing.
She rang them to ask if she was on their list but she was not so was then referred again by her consultant.
'My consultant was really good and while Covid was going on none of the cancer people were seeing anybody. As far as he was concerned, I was free of cancer and that's all he was worried about.
'He was quite open and said he didn't think it was cancer any longer, that it was LS or something.'
- The 54-year-old urged women who are experiencing itchiness that is not going away to see their doctor about their symptoms
The 54-year-old 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.'
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.'
What is lichen scelrosus?
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
Source: NHS
