I had no idea what my vulva was until I was 43 and received a devastating diagnosis
THE word ‘vulva’ wasn’t in Clare Baumhauer’s vocabulary - until she was diagnosed with vulval cancer at the age of 43.
Clare, 50, from Kent, had spent decades struggling with itchiness, soreness and tears ‘down there’ but it wasn’t until a tear turned into an ulcer that a medical professional finally assessed her properly.
The John Lewis employee is married to Matthew, 51, a retail manager, has two children, Chloe, 23, and Ben, 18, and even during pregnancy and smear tests, her vulva complaints went unnoticed.
If they had been, she might have received a diagnosis of lichen sclerosus, a skin condition that often affects that genitals, and is what caused Clare’s cancer.
Clare says: “I had symptoms of lichen sclerosus from the age of about five.
“I can remember not being able to sit down comfortably, was itchy and sore and I remember my mum taking me to the GP - a male GP - when I was probably about eight or nine years old.
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“I was crying in the toilet from pain, it was a burning feeling, like razor blades going to the toilet, but the GP never looked at my vulva, never mentioned anything, said it was cystitis and I was given medication for that.
“As I got a little bit older I was too embarrassed to go back to the doctor, so I kept my symptoms quiet from my mum.
“In my early 20s I was still getting burning, itchy vulva pain. At that point, I took myself to the GP and again it was a male GP, who never asked to look.
“I had never referred to it as a vulva either. The first time I heard the word vulva was when I was diagnosed at the age of 43 with vulva cancer.
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“I'd always called it either down there, privates or vagina and those were also the words GPs used, they never used the word vulva either. I wasn't taught it at school.
“If I tell people I've had vulva cancer, most of the time I get, ‘Where's that?’ And, ‘I didn't know you could get cancer down there’.
“They are the two main things that people mainly say, which isn't surprising because I hadn't heard of either lichen sclerosus or vulva cancer before and because of that, I didn't take my symptoms seriously.
“I went back to male GPs in my 20s and early 30s and just got told I had thrush symptoms
“I also treated myself as well using different creams, but nothing really helped much.
I had a smear test every three years and in that time, nothing was ever picked up, so I'm thinking it must be okay. Nothing serious.
“I eventually saw a female GP and she was the first one that looked and did a swab and a blood test.
“The swab came back negative to having a yeast infection and the blood test was all fine, so she just put my symptoms down to early menopause and I was sent away.
“Then I noticed a tear I’d had for about a year, started to get worse.
“In January 2016 the tear turned into an ulcer and within a short space of about three months, the ulcer got quite big.
“I wasn't going to go back to the doctor's because I've been so many times, but I went to another female GP who looked and at first said she thought it was herpes.
“Obviously, I looked quite shocked - I'd been married to my partner for 25 years at that point.
“So she looked again and said actually, it could be something called vulva cancer.
“I was referred for tests and they took three biopsies- in April 2016 I was told I had vulva cancer and lichen sclerosus, which my oncologist said had caused the cancer and I’d obviously had it since childhood.
“I had all the classic symptoms: white shiny patches on the skin, itching, labia over-shrunk, tears.
I hadn't heard of either conditions and obviously I'm thinking that I haven't got long to live because I've had the symptoms and the tear and the ulcer for about a year.
“Because it wasn't picked up earlier, by the time I had my first surgery in May 2016, I had lymph nodes removed to test.
“Unfortunately, the tumour grew quite aggressively between my scan and surgery and they couldn't get clear margins.
“I underwent 25 sessions of radiotherapy and during one of the scans they noticed my left side lymph nodes still looked swollen, so my oncologist decided in December 2016 that he would go in and remove any lymph nodes that looked a bit dodgy, which he did and turns out the cancer had spread.
“It was then stage three cancer and I needed more radiotherapy.
DEVASTATING SIDE EFFECTS
“I was left with quite a lot of side effects. The radiotherapy has caused lymphedema (swelling) in my left leg, abdomen and pelvis and vulva area, it's also put me into instant menopause at 43, and I’ve also had some bowel issues because of the radiotherapy, and fatigue
“In July 2017, I was told I was in remission, but unfortunately my last checkup was a couple of weeks ago and they've seen an area of concern. So I've had a biopsy which I’m waiting for the results of.
“It wasn't really until after the treatment all finished that it hit me, I was on autopilot during my treatment.
And then I started to get angry because obviously I'd been misdiagnosed.
“If I'd been diagnosed earlier with lichen sclerosus, it wouldn't have spread and gone to stage three and left me with all these side effects.
“If it was caught early like any cancer, it would have been a smaller operation, I wouldn't have needed any radiotherapy, it wouldn't have spread, gone to stage 3 and I would have had a better quality of life after.
“Now I feel like a ticking time bomb. Stage 3 means it's a 40 per cent chance of surviving five years or more. I’ve still got lichen sclerosus because there is no cure for that.
“Having radiotherapy as well is a chance of causing another cancer so you've got that worry.
Signs & Symptoms
The says symptoms of vulval cancer can include:
- a persistent itch in the vulva
- pain, soreness or tenderness in the vulva
- raised and thickened patches of skin that can be red, white or dark
- a lump or wart-like growth on the vulva
- bleeding from the vulva or blood-stained vaginal discharge between periods
- an open sore in the vulva
- a burning pain when peeing
- a mole on the vulva that changes shape or colour
See a GP if you notice any changes in the usual appearance of your vulva.
With , the NHS says:
It causes patches on the skin that are usually:
- itchy
- white
- smooth or crinkled
- easily damaged – they may bleed or hurt if rubbed or scratched
The patches can appear anywhere, but most often are on the:
- area around the opening to the vagina (vulva) and anus
- foreskin and end of the penis
“So it's quite hard, really. You're not the same when you're diagnosed with cancer.
“I want women to check their vulva regularly so they get to know what their normal is, so they know that if anything changes or happens, it's not normal for them, to speak to their GP.
“And I want everyone just to try and use the word vulva, and know the difference between the vulva and the vagina because it's very important.
“If I'd gone to my GP and said that my vulva area was itchy and sore, rather than saying down there or vagina, then maybe they might have asked to look and not just assumed it was internal.
“They are not dirty words, they’re just like head and shoulders, it should be exactly the same and then hopefully in years to come, this taboo will be different and we will be able to talk about anatomy a lot easier than we can today.”
Clare is sharing her story as part of gynae cancer charity The Eve Appeal’s annual Get Lippy campaign, which is asking everyone to share their “Younger Selfie” – what they wish they had known about gynae health.
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For more information about gynae cancers, head to The Eve Appeal at .