We often hear about ‘women’s cancers, and men’s cancers,’ of course these exist but I believe that both sexes need to be more open when discussing these with each other. This week I am sharing a post by my great friend Athena Lamnisos who is the CEO of the wonderful charity, The Eve Appeal, showing the general lack of knowledge and awareness particularly by us men, when talking about gynaecological issues. Make no mistake we have a valuable role to play, and must get beyond the ’embarrassment issue.’ There can no longer be any excuses!
“‘Not just women’s troubles.’ Speaking to a group of city people recently, I started my pitch about The Eve Appeal by asking a question: “How many of you are aware of prostate cancer and its signs or symptoms?” – about 95% of the room put their hands up. I then asked the same question about womb cancer – only 5% of the room raised their hands. There were 100 people in the room – and only one of them was male. What better way to show that gynae cancers deserve more air time, that the symptoms are too little known and that we still need to smash shame, taboos and embarrassment about all things gynae.
Now, the room was full of people who possessed wombs, not prostates, so why did they know so much about prostate cancer and yet so little of the most prevalent gynae cancer. I learnt a lesson that morning: knowledge about gynae cancers needs to reach everyone; not just women, not just girls, but everyone who has a mum, daughter, sister, friend or partner in their life. I hope that those in the room that day took the information home with them and shared what they had learnt. We need to get rid of the taboos around all things gynae with not just women, but everyone. Until we can have normal conversations about periods, menopause and what we call the parts of a women’s body, we won’t make the progress that we need to.
More than 21,000 women in the UK are diagnosed each year with a gynaecological cancer (womb, ovarian, cervical, vaginal and vulval). That’s 58 mums, daughters, sisters, friends or partners a day too many. New research, conducted in 2017 amongst 2,000 people, demonstrates that awareness levels among women, and men, are startling low. Indeed, half the men surveyed admitted that they’d find it uncomfortable to discuss a gynae health issue with their partner, with a fifth of the men aged 18-44 confessing it was all just ‘too embarrassing’.
September is Gynae Cancer Awareness Month. We lead this campaign and the national conversation to get everyone talking about the five gynaecological cancers and their signs and symptoms. This means a lot of straight-talking. It means calling a vagina a vagina – and knowing what the difference is between a vulva (no, it’s not a car) and a vagina. Far too frequently, we hear from women who say that the first time they hear of one of the gynae cancers is when they’re being told they have it. That’s something we must change. Is there a woman alive who hasn’t heard of breast cancer and has some kind of awareness of one of the symptoms? Only one in seven women are able to name a single gynae cancer. Some of these diseases have stealthy cat-burglar symptoms and you need to be alert and body aware to spot them before they have kittens and are diagnosed at a late stage. Others are loud town-criers and announce themselves with bloody aplomb, and yet women drown out the symptoms with an ‘oh it’s probably just one of those things…’.
This September, we are encouraging every woman to get to know their body. This means knowing what your reproductive organs are called and what the signs and symptoms of gynae cancers are, so that you can to look out them and seek medical advice if needed. The key symptoms to look out for across the gynae cancers include irregular or unexpected bleeding (in-between periods, after menopause or after sex), vaginal discharge (yep, just said the word discharge) that smells or may be blood stained, as well as changes to the skin of the vulva or feelings of abdominal bloating that don’t go away.
But we’re not just getting women involved in our campaigning. We’re also launching I Am Adam, a campaign to give a voice to all the men affected by these too-little talked about diseases. ‘Eve’ is the ubiquitous word for ‘woman’, and for every ‘Eve’ we know there are many ‘Adams’ – men who love and care for them and are in the best position to tell them to seek advice and not to be embarrassed, but to talk openly about their concerns. Whilst on the subject of seeking advice, here is a gentle reminder for all those with a gynae niggle that something may not be quite right, or those who have concerns about a loved one; there’s a unique service to #TeamEve that’s free, confidential and staffed by a totally unembarrassable gynae nurse – Tracie. Get in touch – no question is too trivial and there are definitely no taboos.
So remember, gynae health isn’t just for girls. We all have a role to play. We all have to look after each other, smash the taboos and save lives. Our own, our friends, our loved ones. Knowledge is power. #KnowYourBody #IAmAdam #TalkingTaboos
Please take a minute to listen to the very refreshing views and experiences of Dr Rupy Aujla in the vido below.
I raise awareness of womb cancer, also known as endometrial cancer or uterine cancer, all year round and not just for September when I raise awareness of it even more. I do that because I was diagnosed with it in 2010 when I knew absolutely zero about it, could find next to no information on it and large, well established cancer charities weren’t interested in it.
I despair at references to bushes, lady gardens, front bottoms and other jargon – for want of a better description – that masquerade as awareness supposedly meant to educate women about their genitalia / gynae cancers while aiming to break down taboos. Along with continued suggestions in the media that womb cancer ‘only’ affects women because they are overweight to obese, eat too many cakes and biscuits and don’t do enough exercise, without any mention or recognition of the fact that none of those things need to be true for a woman to be diagnosed with endometrial cancer. And that some – possibly many – GPs fob off women with potential symptoms who are ‘too young’ or ‘too thin’ or are ‘at that age’. Not forgetting the gynae-oncology staff who incorrectly believe it’s impossible to have a recurrence of womb cancer because ‘you’ve had your uterus removed’.
Add to all of that the lack of understanding among women that cervical cancer and womb cancer are not the same cancer and, therefore, pap smear tests are not designed to pick up changes to cells high up in the womb / uterine cavity – although those cells might shed onto the cervix and show up in a smear sample as an anomaly that, hopefully, will be investigated – and we have an indication of what needs dealing with in order to stem the rising numbers of womb cancer cases diagnosed each year in the UK and the 2000 or so deaths from it annually.
This year’s campaign slogan from Action on Womb Cancer is Wise Up To Womb Cancer. Let’s hope more people do soon.
Firstly I want to thank you and all the ladies involved for what you do. You are helping so many people that we all know, could not receive this form of support elsewhere. Much of the best support is given by smaller organisations run by people who have experienced the gaps in support and are doing what they can to fill them.
I see these issues day in and day out with the work Kaz and many others do to. It is a real scandal that this work is not even promoted by the big charities.
As you know I am doing my best to ensure that all of our smaller organisations don’t get forgotten, to reate a much more effective system for all of us.
Thanks as always Deb xxxx
You’re doing a fantastic job, as always! Deb xx
Thx so much Deb! xxxx
Fabulous blog by Athena, she and I had a good chat a few weeks ago on the phone, I can’t wait to hear her talk at the Eve Appeal event next week. It is such an amazing charity, one of the very few well known charities who actually interact with myself and Jo Divine and promote our work too. I’m always happy to raise awareness of gynae cancers and sexual health issues for them. Working with Kaz Molloy at Womb Cancer Support and Diane Danzebrink at Menopause Support we are all members of the RCOG Womens Involvement Panel FB group and hear so many women saying they are dismissed by HCPS when they seek advice including myself. We need to raise awareness but also stop GPs telling women their symptoms are normal when it isn’t or for women to live with symptoms for so many years before being correctly diagnosed. There is often a struggle to get the right treatment once diagnosed too. HCPS need to understand cancer doesn’t know your age so they need to stop with the stereotyping of their patients!They also need to understand the impact having gynae cancer on your sex life and relationship is huge, yet so many struggle to talk about the sexual implications when the very treatments and surgical procedures affect all aspects of your health including enjoying sex. Relationship and marriages break down because of the physical and emotional impact of cancer at a time when you need more support, something many HCPs don’t take notice of.
Totally right Samantha. Pre-hysterectomy, the great insight given to me was that ‘everything will be normal afterwards’. Hmmm….
Hi Sam. Yes it was a fabulous blog, Athena is a great writer. We have known each other for many years and I always admire the work that all you ladies do in this sector. There is always a feeling of collaboration for the greater good. With all the challenges we are aware of it is heart warming to see this way of working.
As you know my work goes across all tumour types, but when invited to be particularly involved in the campaign in September I am delighted to help out.
Look forward to catching up at the event this week and talking further! Chris xx
Chris and Athena
Your brilliant post certainly packs a punch where awareness is concerned I shall happily share with all my fiends and family
Thanks so much Dawn, your support is much appreciated!
Dear Chris, Debra Parry suggested I contacted you. I’m a womb cancer survivor campaigning to reduce the barriers to early diagnosis. A big barrier is an outpatient diagnostic test that up to 25% patients find excruciatingly painful and traumatic. I hope this short piece might be relevant as a response to Athena’s excellent Eve Appeal article. http://www.hysteroscopyaction.org.uk Facebook Campaign Against Painful Hysteroscopy The photo is a standard picture in the public domain. Very best wishes, Katharine http://www.hertfordshirecommunitygynae.org.uk/img/hysteroscopy.jpg Another Gynae Cancer Awareness Month and the Eve Appeal encourages us to talk about gynae TABOOS! Here goes. The NHS still doesn’t routinely offer women sedation or GA for hysteroscopy. Unless we’re very rich, all of us with suspected womb cancer are put through Trial by Outpatient Hysteroscopy. According to numerous NHS audits up to 35% of us suffer severe pain and trauma in the process. (Can supply recent stats obtained under FOIA.) For colonoscopy and gastroscopy we’d be offered sedation. But we’re women. And we won’t complain. We’re scared. So some of us die from womb cancer because we or our GPs delay getting a diagnosis. It’s the 21st century. We’re supposed to be a First World Country. There shouldn’t be women crying, vomiting, fainting, having panic attacks for want of an anaesthetist. So please, RCOG – some of us have stenosis of the cervix, have never given birth, suffer from mental illness, have painful endometriosis. Please – RCOG – give equal rights to women undergoing endoscopy of the womb and allow those who wish to have the choice of safely monitored sedation or GA with a modern safe hysteroscope.