We were diagnosed with gynaecological cancers people need to start talking about – the signs to look for
IT’S time the embarrassment ended when we talk about vulvas and vaginas.
“They are not dirty words, it’s our anatomy,” says 50-year-old Clare Baumhauer, who first heard the word vulva when she was diagnosed with vulval cancer at 43.
From the age of five she spent decades suffering soreness, itchiness, tears and the feeling of “razor blades” when going to the toilet.
But she was repeatedly told it was thrush or cystitis.
Clare, from Kent, who works for John Lewis, says: “If I’d said my vulva area was itchy and sore, rather than just saying ‘down there’, they might have asked to look and not just assumed it was internal.
“If I’d heard of vulva cancer, I might have suggested it to one of the doctors and I could have been diagnosed earlier.”
Clare, who is married to Matthew, 51, a retail manager, was diagnosed with lichen sclerosus at the same time.
It is a skin condition that caused her cancer, which had been missed again and again at GP appointments, smear tests and even when she was having her children, Chloe, now 23 and Ben, 18.
She says: “I was quite angry at all the times I’d been seen, often by male GPs, and they hadn’t even looked at my vulva.
“Nothing was ever picked up, so I was thinking it must be OK, nothing serious.
“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 — lymphedema (swelling), fatigue, and bowel problems.”
Clare had surgery, more than 50 rounds of radiotherapy and also went into instant menopause.
The Eve Appeal is the leading charity for gynaecological cancers, raising money to help fund research.
It is behind Get Lippy, an annual campaign in May to promote discussion about the diseases.
The campaign is supported by obstetrician and gynaecologist Dr Anita Mitra, author of healthcare guide The Gynae Geek.
She says: “When I see people being diagnosed, most have never really heard of these conditions.
“Suddenly being told you’ve got cancer, and it’s a condition you’ve never heard of, is really overwhelming and quite scary.
“In order to be diagnosed with cancer, or any gynae condition, you need to know what’s abnormal and feel empowered to go and speak to a healthcare professional.”
But people often face barriers in seeking help, whether it is disability, upbringing or not being taught symptoms to look out for, something made worse by the taboo around even talking about gynae cancers.
Last week The Eve Appeal published YouGov findings which revealed only one in 20 people has a good understanding of gynae cancers.
Jackie Boothe, 50, from Ealing, West London, was diagnosed with womb cancer in 2016.
She says: “I wish I had known the main symptoms and that even if your smear test is clear, there are other gynaecological illnesses you could have.
“And I wish I had a better knowledge of how my gynae parts really worked and how bleeding after sex was something to investigate.”
Having a history of polycystic ovaries, irregular bleeding and bleeding after sex, she only began investigating her symptoms when heavy bleeding began to interfere with learning to swim.
The mum of one and co-founder of Empathy Souls Community says: “I was concerned it would be ongoing and inconvenient but didn’t really believe it could be anything major.”
Following a transvaginal scan and hysteroscopy, involving an examination of the inside of the womb, she was told ovary removal was necessary, putting her into menopause overnight.
Jackie says: “I was completely overwhelmed. I had come across womb cancer but just saw that as something more severe than what I was experiencing.”
She had surgery, but that also came with its own challenges and stigmas.
She says: “Culturally, having to explain everything to my family and friends was very difficult as the womb is a very important part of a woman’s body and they would not have agreed to its removal.”
Globally, black women are twice as likely to die from womb cancer than white women.
Jackie says: “I had friends advising me to keep it secret.”
But thanks to the surgery, she was given the all clear and adds: “I cried and laughed at the same time.”
Comedian Karen Hobbs, 33, from London, was 24 when she saw bright red blood after having sex in September 2014.
She googled her symptoms, which pointed to conditions including early pregnancy problems, untreated STIs, pelvic inflammatory disease and, in rare cases, gynae cancers.
Karen says: “I just kept my fingers crossed for chlamydia.
“I thought out of all of those, I will take chlamydia.”
By November, she had been diagnosed with late stage-one cervical cancer and was navigating surgery to remove her cervix and part of her vagina.
She was also having to cope with unexpected stigma.
When told about her diagnosis, one colleague asked: “How do you get that, then?”
Karen says: “I thought, ‘Would you ask that question about any other cancer?’.
“It’s because it’s between my legs and in my pelvis, right?
“You wouldn’t ask that if it was testicular cancer.
“I explained it’s caused by the human papillomavirus, which is really common and passed on through sexual contact.
“Then my colleague said, ‘I thought you had a boyfriend’.
“I found it absolutely ridiculous that I had to defend the type of disease I had.”
She wants better understanding of HPV all round and adds: “If you’ve had the vaccine, that is fantastic, I’m really pleased and jealous.
“Still go to your cervical screening.
“But if you have any symptoms, don’t wait for your next one.
“You need to speak to your GP and get referred for further investigation.”
Dr Mitra believes there is a lot of shame associated with gynae symptoms and conditions.
She says: “People think others will think they’ve been doing something wrong, they’re not clean or they’ve been having sex with too many people.
“It’s completely not related to that.
“And we can’t be shy. If something bothers you, bother somebody about it.”
Knowing your body’s “normal” is absolutely crucial.
Clare says: “Check your vulva regularly so you get to know what your normal is.
“If anything changes or happens that’s not normal for you, speak to your GP.”
Jackie adds: “Watch for any abnormalities in your bleeding cycle, listen to your body and push for help.
“And pass on stories from The Eve Appeal.
“If it doesn’t resonate with you, it may be a lifeline for a friend.
“Keep the topic open and keep talking.”
THERE are five gynae cancers: Womb, ovarian, cervical, vulval and vaginal.
Dr Mitra says: “If people aren’t aware of the symptoms, we may miss cases or diagnose them much later.”
WOMB
SYMPTOMS: Abnormal vaginal bleeding (between periods, after sex, after menopause, heavier than is normal for you).
Dr Mitra says: “Endometrial (womb) cancer is much more common after menopause.
“While there are lots of reasons that aren’t cancer which could cause you to bleed after menopause, the most important one to rule out is cancer.”
OVARIAN
SYMPTOMS: Increased abdominal size and persistent bloating, persistent pelvic and abdominal pain, unexplained change in bowel habits, difficulty eating and feeling full quickly, feeling nauseous, needing to go to the toilet more regularly.
Dr Mitra says: “Ovarian cancer is most common after menopause and a lot are found very late.”
CERVICAL
SYMPTOMS: Abnormal vaginal bleeding, changes to vaginal discharge, pain or discomfort during sex, unexplained pain in lower back or between hip bones.
Dr Mitra says: “Most people who get cervical cancer are young women and a lot have not had children.
“If we detect it early, we can remove it without doing a hysterectomy and retain their fertility.”
VULVAL
SYMPTOMS: Persistent vulval itch, pain or soreness around vulva, thickened, raised, discoloured patches on the skin of the vulva, visible open sore or growth, mole on the vulva that changes shape or colour, a lump or swelling on the vulva.
Dr Mitra says: “Vulva cancer is more likely to be in someone who’s gone through menopause.”
VAGINAL
SYMPTOMS: Bleeding after sex, and after menopause, vaginal discharge that smells or is blood stained, pain during sex, lump or growth in vagina you can feel, an itch that will not go away.
Dr Mitra says: “Vaginal cancer is very rare but tends to be in older women.
“For all these cancers, if we can, we’ll do surgery, chemotherapy, or radiotherapy.”
PREVENTION AND TREATMENT
BESIDES knowing the signs of the five gynae cancers and seeking help as soon as possible, there are steps you can take to help protect yourself.
The HPV vaccination is offered to all 12 and 13-year-olds at school, people up to 25 through GP practices, and, via sexual health clinics, men aged up to 45 who have sex with men.
Attend your cervical screening, which is offered every three years from the ages of 25 to 64.
HPV is responsible for 99.8 per cent of cervical cancers, nearly 70 per cent of vulval cancers and more than 50 per cent of vaginal cancers.
Dr Mitra says: “With all of these cancers, having a healthy lifestyle may reduce your risk but you can never completely prevent it.”
Treatment-wise, there is much to be hopeful about.
Dr Mitra adds: “We already have very effective surgery, good chemotherapy and are getting more targeted systemic treatments, such as hormonal therapies and more targeted molecular treatments.
“We still need research in those areas.
“But what we really need is something we can do to improve early detection, so we can use these really good treatments predominantly for very early cancers, or potentially try to prevent them in the first place.”
Get Lippy is asking everyone to share their “Younger Selfie” – what they wish they had known about gynae health.
Visit getlippy.org.uk for more details.
For more information about gynae cancers, head to The Eve Appeal at eveappeal.org.uk.