A mother-of-two developed vulval cancer from her extreme skin condition – but her symptoms were dismissed for decades.
Clare Baumhauer, 44, from Erith, Kent, had itchy genitals since she was a teenager – but was told it was just thrush, herpes or cystitis.
After being too embarrassed to visit her doctor for years, she eventually sought medical advice when she was in her early 30s when she developed an ulcer.
It was caused by a tear slightly bigger than a 50-pence coin, and led to her being diagnosed with a tumour between her vagina and bottom.
But it took nearly 10 years before she was told the news last March. Doctors said it was caused by lichen sclerosis – which was mistaken for the host of conditions.
Despite now being in remission, endless bouts of radiotherapy to kill the cancerous cells triggered a ‘tough’ early menopause.
Speaking for the first time about her ordeal, Mrs Baumhauer said: ‘I’d never heard of vulval cancer. Actually, I’d never heard of a vulva.
Clare Baumhauer, 44, from Erith, Kent, had itchy genitals since she was a teenager – but was told it was just thrush, herpes or cystitis
‘I was horrified when I was diagnosed. I immediately thought, ‘it’s terminal, I have cancer. I am going to die”.’
She said that sitting down had begun to hurt, as the sore ulcer had in fact doubled in size and had raised edges.
Mrs Baumhauer said: ‘I thought that I would be sent to a GUM clinic and questioned about my sexual history.
‘But I was actually referred to a gynaecologist to be examined – who consequently wanted to perform an urgent biopsy of my vulva.
‘As a result, I had three punch biopsy in a short period of time, where I was eventually diagnosed with a skin condition called lichen sclerosis. This is what ultimately caused my vulval cancer to develop.’
Triggered an early menopause
She added: ‘I’m delighted to be cancer-free. However, the menopause coming on so suddenly is tough.
It wasn’t until she developed an ulcer, caused by a tear slightly bigger than a 50-pence coin, that she was diagnosed with a tumour between her vagina and bottom (pictured with her husband Matthew, 45, daughter Chloe, 18, and son Ben, 13)
‘My hair has thinned and I’ve had hot sweats. But, compared to cancer, I can deal with it. I’m just glad I’m alive.’
Mrs Baumhauer added: ‘I never missed a smear, and they all came back clear, so I thought it was just thrush.
‘I had two Caesarean births with my daughter Chloe (18) and son Ben (13) and nothing was picked up then.
‘I’d see adverts on television for thrush creams and cystitis medicines and they made me think that problems down there were common.’
Even when she developed a tear, initially small, in her late 30s, she was not unduly concerned.
She admitted: ‘I thought it was from sex.’
It took Mrs Baumhauer (pictured) nearly 10 years before she was told the news last March, after a smear test even came back clear
Doctors even suggested it could be herpes, but it was ruled out when they found out she had been with Matthew for 26 years.
In March 2016, more than 35 years after she initially developed symptoms, she was referred to hospital by a different GP.
At Queen Elizabeth Hospital in Woolwich, south London, doctors carried out a biopsy under local anaesthetic.
Her vulval cancer diagnosis
Just 10 days after the procedure, she found out she had vulval cancer. It was marked as stage 1B, grade 3 – meaning it was small, but growing quickly.
In April, at St Thomas’ Hospital in central London, she had an operation called hemi-vulvectomy to remove the tumour.
Despite surgeons cutting it all out, scans of her groin revealed that the cancer had spread to her lymph nodes, so she had 25 sessions of radiotherapy.
Then her lymph nodes started swelling, and she developed an infection and her groin had to be filled with padding.
The radiotherapy, which triggered an early menopause, finished in March, but left her legs burnt. The rest of her body was unaffected
WHAT IS VULVAL CANCER?
Vulval cancer is one of the rarest forms of the disease, with around 1,000 cases diagnosed in the UK each year.
The vulva includes the lips surrounding the vagina (labia minora and labia majora), the clitoris and the Bartholin’s glands (two small glands each side of the vagina).
Eighty per cent of those are in women aged over 60, while the pre-cancerous form of the condition – vulval intraepithelial neoplasia – tends to be diagnosed in those aged 30 to 50.
Symptoms of vulval cancer include:
- a lasting itch
- pain or soreness
- thickened, raised, red, white or dark patches on the skin of the vulva
- an open sore or growth on the skin
- burning pain when passing urine
- vaginal discharge or bleeding
- a mole on the vulva that changes shape or colour
- a lump or swelling in the vulva
While all these symptoms can also be a sign of other, more common conditions, it is vital to see your GP if any persist.
The HPV vaccine is among the greatest protection available to the disease, as many forms of vulval cancer are triggered by the virus.
Rushed to hospital
Mrs Baumhauer was at Butlins in Bognor, West Sussex, in December when it got really bad and she had to be rushed to hospital.
She spent New Year’s Eve 2016 in St Richard’s Hospital in Chichester, West Sussex, where she was diagnosed with the skin infection cellulitis.
But when she returned to Kent, she was sent back to St Thomas’ Hospital for her lymph nodes to be drained.
Mrs Baumhauer was given antibiotics – but scans showed there was still cancer and she needed more radiotherapy sessions.
The radiotherapy, which triggered an early menopause, finished in March, but left her legs burnt. The rest of her body was unaffected.
What is lichen sclerosis?
Now Mrs Baumhauer realises she never had thrush, but instead had always suffered from lichen sclerosis.
According to the NHS, the skin condition is more likely to affect the genitals and thought to be linked to the immune system.
Left untreated, lichen sclerosis – which cannot be cured but can be controlled with steroids – increases the chance of vulval cancer.
Mrs Baumhauer wants people to learn about the skin condition so they can be diagnosed and treated early on.
She is desperate for people to avoid the ordeal she has been through, having suffered with problems in her vaginal area for decades.
The Eve Appeal is highlighting during Gynaecological Cancer Awareness Month in September that men as well as women can play a major role in raising awareness of the signs and symptoms of gynaecological cancer.
Get involved, find out more about the symptoms of gynaecological cancers through #Knowyourbody and visit eveappeal.org.uk for more information.
Now Mrs Baumhauer realises she never had thrush, but instead had always suffered from lichen sclerosis – which raised her risk of vulval cancer
She is desperate for people to avoid the ordeal she has been through, having suffered with problems in her vaginal area for decades