My ‘itchy vagina’ turned into VULVAL cancer – after doctors spent decades dismissing it as thrush or herpes
A MUM has revealed how doctors dismissed her itchy vulva as STIs and thrush for 30 years - but she was actually suffering from a condition which developed into a rare form of cancer.
Mum-of-two Clare Baumhauer, from Erith, Kent, visited her GP more than 30 times but they repeatedly dismissed her symptoms.
The 46-year-old is speaking out about the condition for Lichen Sclerosus Awareness week - when women are encouraged to "know your vulva"...
Growing up, I experienced years of itching and soreness around my vulva. But every GP I went to see would tell me it was thrush or cystitis, without ever even examining me.
Every trip to the doctor’s left me frustrated and none the wiser. So eventually I stopped asking for help, ignoring the discomfort and simply learning to live with it.
Aged 18, I met Matthew, who eventually became my husband. We went on to have two children - Chloe, now 20, and Ben, now 15.
It was in my 30s that my symptoms started to worsen.
Once again, I returned to the doctors. For the first time, I saw a female GP, who did examine me but gave the familiar diagnosis of thrush.
Another doctor said they thought it might be an early menopause. I was prescribed creams and ointments, but they didn’t help.
In 2016, I developed a small tear in my vulva, similar to the sort of injury a woman might experience in childbirth.
I tried to ignore it, thinking it would heal itself. But it hurt whenever I went to the loo and wiped myself down there.
I saw a female GP, who said 'it looks like herpes. You should go to an STI clinic. How many sexual partners have you had?'
Clare Baumhauer
As weeks passed, the tear worsened, developing into an ulcer.
But I told Matthew “what’s the point of going back to the GP again? It never makes any difference". I was so frustrated by all the other times I hadn’t been helped.
By February 2016, the ulcer had become so sore I was forced back to the doctor's.
I saw another female GP, who said “it looks like herpes. You should go to an STI clinic. How many sexual partners have you had?”
I was horribly shocked. I’ve only ever had one partner: my husband. By then, I’d been with Matthew for over 25 years.
Hearing that, the doctor referred me to a specialist gynaecologist.
In March 2016, at Queen Elizabeth Hospital, Woolwich, I finally got the diagnosis that had evaded me for over 30 years.
The consultant told me I’d been suffering from a long-term gynae problem called Lichen Sclerosus, which if left untreated can lead to cancer.
I had a biopsy and, following an agonising two-week wait for results, I was diagnosed with stage one vulval cancer in April 2016.
It was a dreadful shock. At this stage in my life, I didn't even know what the vulva was, or that you could get cancer there.
I’ve met women who haven’t told their own families they’ve been diagnosed with vulva cancer because they feel ashamed
Clare Baumhauer
The next few weeks passed in a blur. All I could think about was my family.
I feared I wouldn’t see Chloe and Ben grow up, get married or have kids.
In May 2016, at St Thomas’ Hospital, London, I had surgery to remove the tumour situated on my perineum, between my vagina and back passage.
It was by then growing aggressively and measured two centimetres in width.
Because of its location, the surgeons had to take biopsies from my lymph nodes to ensure they were clear of cancer. Luckily they were.
My recovery from the op was slow and painful - I spent most of the time laying in bed, as sitting up was just too painful, until my stitches came out.
In August 2016, with my surgery wounds healed, I began 25 sessions of radiotherapy - which caused third degree burns over my entire genital area.
The skin started to lift off and weep. Walking was painful - I felt tired and tearful all the time.
And my ordeal wasn't over yet. During a check-up, the doctor noticed one of my lymph nodes was swollen.
In December 2016, it was removed, along with another six lymph nodes - and it turned out that three of them were cancerous. My vulva cancer was now classed as stage three.
A second bout of surgery caused lymphodema (swelling) in my vulva, abdomen, pelvis and left leg.
In January 2017, my health nosedived. I was admitted to hospital with cellulitis and sepsis.
Once I recovered from that, in March 2017, I began another 33 sessions of radiotherapy.
I also needed two more operations to remove further tissue. My therapy even set off an early menopause - for which I was prescribed HRT.
But finally, in July 2017, the treatment was finished and I was told I was cancer-free.
Since then, thankfully, I’ve remained well and have returned to my job in catering. But it still makes me angry that I was misdiagnosed for so many years.
Vulva cancer & Lichen Sclerosus - the facts
Lichen Sclerosus is a skin condition causing itchy white patches on the genitals or other parts of the body - which may bleed or hurt if rubbed.
It affects people of both genders and all ages, but is most common in women over 50.
The patches can appear anywhere, but most often are on the area around the vagina and anus in females, or on the foreskin and end of penis in males.
Affected skin can sometimes become scarred and tight over time.
Lichen Sclerosus cannot be cured, but prescription steroid creams will help relieve the symptoms.
It also increases your risk of getting cancer. The risk is low, but see your GP if you have a lump or ulcer which doesn't go away.
Symptoms of gynaecological cancers include:
- A lump/sore on your vagina or groin
- Itching, burning or soreness
- Unusual vaginal discharge - which is watery, blood-stained or smelly
- Heavier or more painful periods than normal
- Bleeding between periods, after sex or after menopause
- Pain when peeing, needing to pee often, or blood in your pee
- Thickened, raised, red, white or dark patches on the skin of the vulva
- Having a bloated/swollen tummy
- Pain or discomfort in the lower tummy and/or back
I've set up an online support group with fellow patient Emma Norman, called Lichen Sclerosus and Vulva Cancer Awareness UK.
We want to urge women not to be too shy to pay attention to their vulva.
Our fear of talking about vaginas only makes it harder to get prompt diagnosis.
I’ve met women who haven’t told their own families they’ve been diagnosed with vulva cancer because they feel ashamed.
They've lied and said they have breast cancer or another form of cancer, because it's easier to talk about.
I also believe many doctors are too embarrassed to investigate properly.
Please, don't be embarrassed about your body - because if you ignore the symptoms, you won't get diagnosed. That's a lesson I learned the hard way.
I must have gone to various GPs at least 30 times over the years. I was also seen by gynaecological nurses, practice nurses and midwives. But nobody realised what was going on.
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If my Lichen Sclerosus with its tell-tale white patches had been recognised and treated decades ago, then it should never have developed into cancer.
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Now I'm committed to spreading the word, and never flinching about a topic which shouldn't remain a taboo.
Last week, we spoke to a woman whose mysterious New Year’s illness was an infection which led to deadly sepsis and turned her toes black.
