Understanding Vulvar Cancer
- A 54-year-old woman whose vulvar cancer was misdiagnosed as a yeast infection said she was forced to have part of her clitoris "shaved away," which has left her unable to have sex with her husband.
- Vulvar cancer is a gynecological cancer of the vulva, and it's relatively rare.
- Vulvar cancer accounts for about 6% of cancers of the female reproductive organs in the U.S. and 0.7% of all cancers in women.
Toni Williams, a mother of two from Plymouth, Devon, England, told the Daily Mail that her symptoms first began in 2018 when her vagina and vulva became itchy and "red raw." The discomfort got so bad that she couldn't even wear underwear.
Read More"If it was (a yeast infection), it was the worst I ever had and it wasn't going away," she added. "The vagina had become very sore inside and out."
Toni finally got some relief when she saw a woman doctor.
"Once I had 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," Toni said. "She took one look and said, 'I think it's gone past anything; I think you have got cancer.' It had (gotten) so much worse."
She quickly underwent surgery to "take biopsies, diagnose and cut out little lumps that had come up near the perineum," which is the area between the anus and genitals, extending from either the vagina opening to the anus or the scrotum to the anus.
Toni then went back to her doctor on Dec. 27, 2018, and he told her that "everything was good," except she had 0.8 millimeters of vulvar cancer on her clitoris.
"They needed to either take it away completely or shave it," Toni explained. "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 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."
While Toni's cancer is gone, she now suffers from a skin condition called lichen sclerosus.
Lichen sclerosus is a chronic skin condition that causes irritated skin around external genitalia such as the vulva, typically in the form of white patches where the skin becomes thin, wrinkled and extremely sensitive, according to the National Women's Health Network. This condition mainly affects postmenopausal women, although premenopausal women and men can still develop lichen sclerosus.
The surgery also left her unable to have sex with her husband, Andrew, and she experiences pain when using the toilet.
"We've only been married almost eight years and for the last four years we haven't been able to have sex," Toni said. "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," she continued. "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."
"Since I first found out I had vulvar cancer and LS, I've tried to make more people aware," she added. "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 (a yeast infection)."
Understanding Vulvar Cancer
Vulvar cancer is a gynecological cancer of the vulva, and it's relatively rare.
According to the American Cancer Society, vulvar cancer accounts for about 6% of cancers of the female reproductive organs and 0.7% of all cancers in women.
In the United States, women have a 1 in 333 chance of developing vulvar cancer at some point during their life. In 2022, about 6,330 women will be diagnosed with vulvar cancer, and 1,560 women are expected to die from this cancer.
In the United Kingdom, where Toni lives, vulvar cancer is even more rare (but that could be due to the U.K. having far less people than the U.S.) about 1,300 cases were diagnosed between 2016 and 2018, according to Cancer Research UK.
Related: 'My Vulva Has Changed Color: Could it be Vulvar Cancer?'
Signs & Symptoms
According to ACS, some of the symptoms of vulvar cancer include:
- An area on the vulva that looks different from normal; it could be lighter or darker than the normal skin around it, or look red or pink.
- A bump or lump, which could be red, pink, or white and could have a wart-like or raw surface or feel rough or thick
- Thickening of the skin of the vulva
- Itching
- Pain or burning
- Bleeding or discharge not related to the normal menstrual period
- An open sore (especially if it lasts for a month or more)
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