Gynae cancers and their taboos: It’s killing us

Eve Appeal and women’s cancer advocate Julia Tugwell shares with us what she wants to GET LIPPY about throughout May; from sex education for young children to the importance of knowing key signs and symptoms of these dreadful cancers.

In April I attended a breakfast briefing for the launch of the Eve Appeal’s #GetLippy campaign at The Royal College of Obstetricians and Gynaecologists. Representatives of the media, Public Health England, NHS England and others to hear why the campaign to smash taboos, stigma and embarrassment about gynaecological health is much needed. I was also fortunate enough to attend another launch event a week later at Harvey Nichols. The room was full of equally important, glamorous people. A fantastic turn out of women and men who were so willing to share the message that talking about all things gynae is not just ok it’s actually vital to save lives.

Both times I was there as an expert by experience and commented on my personal story.  I was diagnosed with cervical cancer in 2013 and vaginal pre cancer in 2014. The treatment for these ultimately saw me lose my womb, cervix and vagina. Yep, I had my whole vagina surgically removed. I have been left with life long side effects of treatment. I strongly believe that if I had not been too embarrassed to either go for my smear test when invited or present with my symptoms when they first started I could of avoided such radical surgery.

I normalised my symptoms and in hindsight there were many.

Smelly discharge – I thought this watery, pale discharge was urine and that I was incontinent. My consultant later asked me ‘Did it smell like urine?’ I replied ‘No. It smelt much worse than than that.’ If your discharge starts to smell really bad, it is not right!

Odd periods – I was 42 when diagnosed but for a while before I had longer and heavier periods than normal.  After my period I would have another bleed a couple of days later of brown blood. I put this down to possibly beginning my menopause.

Back ache – I put this down to life!

Fatigue – Again put down to life!

Weight loss – I put this, very welcome to me, symptom down to no longer over-indulging

The only thing that got me in front of my GP was bleeding after sex. Even then it never crossed my mind that it could be cervical cancer despite not having had a smear test in YEARS. How very stupid was I?  But I’m not alone. 1 in 4 women do not go for their cervical screening when invited. If it’s not you it will be someone you know. I guarantee it.

 

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Despite all my treatment I consider myself lucky. I am still alive. Many are not.

During the launch events members of the panels spoke of heart-breaking stories where embarrassment had delayed diagnosis.  One of the members of the panel retold a story of a lady that presented so late with a vulval cancer the tumour had got so big she could no longer sit down. It had been there years. She of course knew it was there but embarrassment stopped her going to the GP. Another story of a woman diagnosed just days before her death with ovarian cancer who had ignored the fact she was now needing to urinate far more often. Another panel member, A GP, said that many patients use the term ‘down there’. As there are lots of things ‘down there’ that term needs unpicking by the GP to find where the issue really is.

Do we not in 2018 know the names of our body parts? Can they not leave our lips without a blush?  Interestingly both GP’s on the panel said that pubic hair has become almost a rarity in the last 15 years. Why? Do I need to feel an extra layer of embarrassment that I don’t part with my hard-earned cash every 6 weeks to get my pubic hair ripped out? Do I need to be embarrassed that my vulva is not as plumper than others? That my lips aren’t porn tidy? That I’ve got an ingrowing hair? I can assure you that smear taking nurses DO NOT CARE and nor should you.

Panel discussion moved on to the absolute need for better sex education for ALL ages. The sexual landscape is unrecognisable from 20 years ago. Many apps exist to allow no strings attached ‘hook ups’. The internet delivers porn to our and our children’s palms in the tap of a click. Delivering unrealistic images of vulvas, breasts and penises. Delivering unrealistic concepts of what sex is about. As women we are fighting to be taken seriously if we don’t live up to the media and society’s acceptable image of ‘woman’.

For me this campaign is about far more than gynaecological cancer awareness raising. It is about being able, as women and girls to be able to talk about discharge and periods and vulval itches and sex and pubic hair and contraception and sexual preferences. To know and use the correct anatomical names for our genitalia.  If we can talk about these facts with our friends, our partners, our families in a matter of fact way, we will find it easier to talk to our doctors when something isn’t right.

If we are going to prevent these cancers we have to change society’s perception that talking about women’s menstrual, physical and sexual reality is taboo.

It’s killing us…