A mum was forced to have part of her clitoris removed and has been left unable to have sex for years after developing agonising 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.
The 54-year-old was eventually examined by a sympathetic GP who revealed the area looked like it could be cancerous. Soon after, Toni, who was unable to wear knickers due to how sore the condition made her, underwent 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 cancer-free but is now battling an incurable skin condition, suspected to be lichen sclerosus (LS) - that causes itchy white patches on the genitals. This condition means Toni now never lets her husband see her vagina and she is unable to use the toilet without being in agony.
Mum-of-two Toni, from Plymouth, 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.
"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.
"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's condition first started with what she believed was the common yeast infection thrush more than four years ago. She claims she was given antibiotics but it never cleared up.
Soon she was left pleading with doctors to properly examine her - by which time she claims it had developed into cancer. Over the next few months, Toni underwent life-changing surgery on her clitoris and perineum, the effects of which she still suffers to cope with.
Toni 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.
"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. 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. Since then, I've been in pain with this condition that hasn't been fully diagnosed yet.
"On the medical records, when he examined me, he's put that he thinks it's lichen sclerosus. He then said in the letters that he thinks it might be eczema as well."
Since going under the knife, Toni claims her life is still a battle as she was forced to quit her job as a chef and struggles to cope with the pain each day. While her consultant is satisfied she is free of cancer, she has now been left with the agony of a mystery skin condition that she is still waiting to see a specialist for.
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. He put in a referral to dermatology a year ago and I've heard absolutely nothing. I phoned them up to ask if I was on their list and they said they had no name for me whatsoever - there was nothing.
"They told me to go back to my consultant and find out what was going on. He then referred me again. 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."
Toni now 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."
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 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
