'They had to find a way to rebuild my womanhood'

Four years after learning she had cancer of the vulva, Claire Taylor tells Lynne Wallis about how she faced up to radical surgery, social stigma – and life-threatening illness

Four years ago, Claire Taylor, then 20, was like any other young woman on the edge of her life. Good looking, outgoing, bright and full of youthful exuberance with lots of friends and a promising career unfolding as a chef on the Isle of Man, there was just one small thing that bothered her. In an age where women are expected to strive for absolute perfection in the looks department, Claire had an imperfection she badly wanted corrected – an extra flap of skin on her labia that made her feel "like a freak".

And then four years ago, while washing, Claire found a centimetre-long lump on the right side of her vulva. Her GP diagnosed a sebaceous cyst and recommended a small surgical procedure to remove it, and when a surgeon took some of it away for a biopsy in July 2009, just to make sure there was nothing else going on, they took the opportunity to remove her excess skin. Claire was thrilled. "It was bliss, feeling normal for the first time ever," she recalls.

She didn't know it then, but her blissful state was to last a mere month. "I didn't think any more about the surgery I'd had, and then I had a phone call from the hospital saying they had the results of my tests that I had to come in to see the doctor. They asked me to take someone with me. I had no idea why this was and I became anxious. We sat down and the doctor came right out and said, 'Miss Taylor, you have cancer.' The shock was indescribable. My friend had to almost carry me home, and I wept hard. My parents were devastated. Dad just couldn't believe it. Mum was a bit calmer. To be told that at age 20 that you have a life-threatening illness was just totally unreal."

Claire's cancer, a squamous-cell carcinoma, was a very rare type, which, in three out of four cases, affects women aged over 65. The tumours are normally found within surface tissue. Claire's was, more rarely, deep inside the vulva. She was sent to Liverpool hospital for her first operation in November 2009, where surgeons made an incision down the right labia to cut the cancerous tissue out. But subsequent tests showed cancerous tissue was still present. Doctors recommended "radical excision" of Claire's labia, which meant its total removal on one side. She recalls: "I had to give up my job anyway because I couldn't concentrate – I almost fell into one of the deep fat fryers one day, and then I nearly cut my hand off chopping vegetables."

After the removal of the entire right side of Claire's labia, doctors discussed reconstructive surgery, which meant taking a lump of tissue from her groin and using it to make a new labia. The painful operation was unsuccessful, and later that year Claire began self-harming and even attempted an overdose.

She said "The stitches gave way and the whole thing collapsed. I just wanted to feel normal, but it was worse than ever. I was devastated, but I bottled up my feelings. I didn't want to appear weak and I feared no one would understand, but it all welled up inside me. I'd been butchered, and I couldn't pee properly because the architecture of my vagina and urethra had been altered drastically, and it didn't aim straight so it went down my leg.

"I was put on anti-depressants but I didn't get on with them very well. It was a very low point in my life. We had nurses in to help with my care and hygiene, I had to douche every time I had a pee, I was on 20 different tablets and I'd developed insomnia from sleeping in a very unnatural position, with my legs held open with a pillow between them. I borrowed my grandad's wheelchair but I didn't go out much because I didn't know what to say to people if they asked what was wrong. My independence was shot to pieces."

Claire's genitalia were in an extremely poor state. Her vagina had almost closed up where the surgery had impacted on her internally, and she had lost lots of glands including those that lubricate the vagina. She had the very good news that the cancer had gone, but there was nothing more doctors in Liverpool could do for her surgically, so they referred her to the Royal Marsden in London. She said "They had to try to find a way rebuild my womanhood, but it wasn't going to be easy. I was dubious because I'd put my trust in doctors before."

After more scans and tests, and a painful procedure to confirm her lymph nodes were not irregular as they had suspected, Claire was introduced to cosmetic surgeon Paul Harris. "I immediately liked and trusted him. He calmed me and my parents down, and described how he would reconstruct the lip of my vagina. After multiple tests and procedures to prepare, he took skin and flesh from my bum cheek and brought it round while it was still 'alive' and attached to me, to make a new labia. He took away all the scar tissue, and used fat from my stomach to fill the potato-sized hole in my thigh. I was meant to be under for two hours, but it turned into six."

Claire was in bed for five days, walking 'like John Wayne' when she got up. The skin graft had taken successfully but Claire worried about her future. "There were so many things I didn't know the answers to. My vagina was too small so I had to use a dilator to keep it open, to stretch the tissue, which was extremely painful. Doctors say I can conceive but probably won't be able to give birth naturally because of the scar tissue and lack of elasticity. I had a massive excess of skin and looked so ugly down there I couldn't imagine ever having sex again. I knew I had to let everything heal."

Aside from her labia being different colours on either side, one side having hair and the other not, and her clitoris being in a slightly different place to where it should have been, Claire was satisfied with the surgery, except for one problem – when she stood up everything hung down because her organs weren't attached to anything. "I wanted it to look better, and to stay in place when I am upright. I showed Mr Harris, and he was rather apologetic he hadn't realised what had happened. He agreed to do perform further surgery." The surgery was successful.

Claire, who is now hoping to go to university to study law, says, "Life is short. My diagnosis really made me realise that I have to do what I really want to, not just settle. It could all have been over for me, and I'd have had so many regrets about things I didn't achieve." One thing Claire doesn't regret one bit is having got involved with the Ellen MacArthur Cancer Trust, a charity for children and young people with cancer, which take groups on sailing trips and other outings.

She said "It was only when I hung out with other young people with cancer that I felt I wasn't alone. It saved me, hearing their stories, knowing how brave they were, relating my experience to people who understood what it was really like."

Four years to the day after diagnosis Claire threw a party. "I wanted to mark it because I'm still here – when I was told 'you have cancer' I didn't know if I'd be here or not four years on. I've had the date of diagnosis tattooed on my back – I want it there so that in future if I have problems with any children I may have, financial worries or some other kind of issue, I can look in the mirror and remember that nothing will ever top being diagnosed with something that could have killed me. I'm looking to the future now."

Life and Style
love + sex A new study has revealed the average size - but does that leave men outside the 'normal' range being thought of as 'abnormal'?
Arts and Entertainment
TV
Voices
The Palace of Westminster is falling down, according to John Bercow
voices..says Matthew Norman
Sport
Steve Bruce and Gus Poyet clash
football
Life and Style
ebookNow available in paperback
ebooks
ebookPart of The Independent’s new eBook series The Great Composers
News
Graham Norton said Irish broadcaster RTE’s decision to settle was ‘moronic’
TV
Arts and Entertainment
Jake and Dinos Chapman were motivated by revenge to make 'Bring me the Head of Franco Toselli! '
arts + ents Shapero Modern Gallery to show explicit Chapman Brothers film
Arts and Entertainment
Kurt Cobain performing for 'MTV Unplugged' in New York, shortly before his death
music Brett Morgen's 'Cobain: Montage of Heck' debunks many of the myths
Life and Style
life
Sport
Brendan Rodgers
football The Liverpool manager will be the first option after Pep Guardiola
News
Amazon misled consumers about subscription fees, the ASA has ruled
news
Arts and Entertainment
Myanna Buring, Julian Rhind-Tutt and Russell Tovey in 'Banished'
TV Jimmy McGovern tackles 18th-century crime and punishment
Arts and Entertainment
Paul Whitehouse as Herbert
arts + ents
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Recruitment Genius: Lettings and Sales Negotiator - OTE £46,000

    £16000 - £46000 per annum: Recruitment Genius: This is an opportunity to join ...

    Recruitment Genius: Home Care Worker - Reading and Surrounding Areas

    £9 - £13 per hour: Recruitment Genius: This is a great opportunity to join a s...

    Recruitment Genius: Key Sales Account Manager - OTE £35,000

    £25000 - £35000 per annum: Recruitment Genius: Have you got a proven track rec...

    Recruitment Genius: Sales Executive - OTE £40,000

    £15000 - £18000 per annum: Recruitment Genius: This is a great opportunity for...

    Day In a Page

    Syrian conflict is the world's first 'climate change war', say scientists, but it won't be the last one

    Climate change key in Syrian conflict

    And it will trigger more war in future
    How I outwitted the Gestapo

    How I outwitted the Gestapo

    My life as a Jew in wartime Berlin
    The nation's favourite animal revealed

    The nation's favourite animal revealed

    Women like cuddly creatures whilst men like creepy-crawlies
    Is this the way to get young people to vote?

    Getting young people to vote

    From #VOTESELFISH to Bite the Ballot
    Poldark star Heida Reed: 'I don't think a single bodice gets ripped'

    Poldark star Heida Reed

    'I don't think a single bodice gets ripped'
    The difference between America and Israel? There isn’t one

    The difference between America and Israel? There isn’t one

    Netanyahu knows he can get away with anything in America, says Robert Fisk
    Families clubbing together to build their own affordable accommodation

    Do It Yourself approach to securing a new house

    Community land trusts marking a new trend for taking the initiative away from developers
    Head of WWF UK: We didn’t send Cameron to the Arctic to see green ideas freeze

    David Nussbaum: We didn’t send Cameron to the Arctic to see green ideas freeze

    The head of WWF UK remains sanguine despite the Government’s failure to live up to its pledges on the environment
    Author Kazuo Ishiguro on being inspired by shoot-outs and samurai

    Author Kazuo Ishiguro on being inspired by shoot-outs and samurai

    Set in a mythologised 5th-century Britain, ‘The Buried Giant’ is a strange beast
    With money, corruption and drugs, this monk fears Buddhism in Thailand is a ‘poisoned fruit’

    Money, corruption and drugs

    The monk who fears Buddhism in Thailand is a ‘poisoned fruit’
    America's first slavery museum established at Django Unchained plantation - 150 years after slavery outlawed

    150 years after it was outlawed...

    ... America's first slavery museum is established in Louisiana
    Kelly Clarkson: How I snubbed Simon Cowell and become a Grammy-winning superstar

    Kelly Clarkson: How I snubbed Simon Cowell and become a Grammy-winning superstar

    The first 'American Idol' winner on how she manages to remain her own woman – Jane Austen fascination and all
    Tony Oursler on exploring our uneasy relationship with technology with his new show

    You won't believe your eyes

    Tony Oursler's new show explores our uneasy relationship with technology. He's one of a growing number of artists with that preoccupation
    Ian Herbert: Peter Moores must go. He should never have been brought back to fail again

    Moores must go. He should never have been brought back to fail again

    The England coach leaves players to find solutions - which makes you wonder where he adds value, says Ian Herbert
    War with Isis: Fears that the looming battle for Mosul will unleash 'a million refugees'

    The battle for Mosul will unleash 'a million refugees'

    Aid agencies prepare for vast exodus following planned Iraqi offensive against the Isis-held city, reports Patrick Cockburn