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Research by the Eve Appeal, the UK’s leading gynaecological cancer charity (2019) found that poor quality and embarrassed conversations between healthcare professionals (HCPS) and patients is leading to delayed diagnosis.
Nearly half (47%) said that women not knowing the correct terminology for their reproductive anatomy to be able to explain what their symptoms were, could lead to a delay in diagnosis of a gynaecological cancer. 88% of medical professionals feel that helping patients to express their thoughts or clearly describe their symptoms results in better care.
Worryingly, 1 in 5 women (18%) agreed with statements saying a tampon would interfere with urination as they lack basic anatomical knowledge that menstruation and urination involve two different holes, the urethra and the vagina. This total rises to 43% of men which is why we need to educate everyone about gynaecological health.
These results show that we urgently need to change the way in which we address womens gynaecological health. This is why the GET LIPPY campaign provides women with the right information and confidence to talk clearly about their anatomy and signs and symptoms to help diagnosis of health issues, including menstrual and hormonal issues and the 5 gynaecological cancers.
Eve Appeal have created an easy to use Get Lippy checklist to help your doctor help you so you can get the most out of a short 10 minute appointment when you have a gynaecological issue, to help you know your body when something feels abnormal and to allay feelings of embarrassment, fear and lack of knowledge when you do make an appointment to see your GP.
You can also support research into gynaecological cancers by donating to Eve Appeal.
Previous research in (September 2016) by the Eve Appeal found that 93% of daughters said parents never discussed ‘women’s issues’ with them.
Nine out of 10 (93%) daughters said their parents never discussed gynaecological health issues with them when they were younger and 84% said their parents never discussed the female sexual anatomy.
Even more worrying, 1 in 7 mothers said they did not feel it is their role or duty to educate their daughter about gynaecological health, with the youngest generation of mums being the most reticent – just over a quarter (27%) agreed it was not their role to educate their daughters. The 2019 campaign was deisgned to get people to talk across the generations including children, parents, grandparents, aunt, uncles,god parents, adoptive parents and carers
Research conducted by the Eve Appeal 2017 found around one in six men know nothing about gynaecological health issues and don’t feel that they need to know, as it is a female issue.
They found that 50% of the 1,000 men surveyed were unable to identify the vulva, cervix, ovaries and Fallopian tubes on a diagram, similar to the number of women who were surveyed in 2016 with the same diagram which found that half of young women aged 16-25 couldn’t locate the vagina on a medical diagram. 65% of the women surveyed found it difficult to use the word vagina itself.
Team Eve asked all “Eves” and all the “Adams” in their lives from their partners, sons, dads, uncles, godfathers, grandads and male friends to be aware of the sign and symptoms associated with gynecological cancers. It’s not just a “female” thing, men need to encourage their loved ones to seek help if they notice anything abnormal.
Athena Laminsos CEO of the Eve Appeal told the Huff Post about a talk she gave starting her 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.
She then asked the same question about womb cancer and only 5% of the room raised their hands. You would think she was talking to a room of men but there was actually only 1 man in the room, the rest were women so why did they know about prostate cancer but not womb cancer which is the 4th most common cancer to affect women in the UK?
In 2018 Eve Appeal campaigned to get Cancer on the Curriculum with the introduction of the new Relationships and Sex Education curriculum due to come into force in 2020. Independent research revealed two thirds of UK parents think children should be educated on cancer, and that nearly a third of parents feel uncomfortable talking about cancer with their own children. The research found that half of parents believe a cancer education awareness programme should include gynaecological awareness.
Public Health England (2018) published result from a survey of which found women struggle to talk about reproductive and gynaecological issues due to embarrassment. They found that of the 7,367 women surveyed, 31% had experienced severe reproductive health symptoms in the last 12 months, ranging from heavy menstrual bleeding to menopause, incontinence to infertility yet only 50 % sought medical advice. Many believe that these conditions and symptoms are normal, they have to live with them or there is no treatment yet so many of these issues impact upon daily living, relationships, and work life.
Despite sex being thrown in our face every day through the press, on social media and being happy at exposing our vulva to our beauty therapist when we go for a wax we still struggle to talk about our bodies because of embarrassment and the difficulty in using words like vagina, vulva, periods, discharge and lubrication or go for our smear test
Another factor is the fear that it may be something abnormal which is why getting it checked out is important because many symptoms are harmless and can be easily explained and treated to save you hours of worrying. Any abnormal bleeding should be checked and especially post menopausal bleeding.
However if it does feel abnormal for you, ask to be referred to a gynaecologist by your GP. Do not be tempted to use intimate hygiene products to “wash away” your sympotms. Many contain irritating ignredients which will exacerbate or mask your sympotms, not help them.
Many women assume that painful or heavy periods are the norm, lying curled on the floor in agony or having to use numerous menstrual products, leaking through clothing, avoiding wearing light clothes, flooding the mattress with blood and needing to take a day off every month to cope with symptoms is what all women do, yet this is abnormal and women need to seek medical advice. If you were bleeding abnormally from any other body part, you would seek medical advice yet when it comes to abnormal vaginal bleeding, many people simply ignore it.
It does not help when other women are not supportive. I heard some women including female managers saying they cannot understand why women complain so much about their periods, morning sickness, endometrial pain and menopause symptoms as they never had a problem and just got on with their life. So much for “sisterhood” when this lack of empathy from our gender exists!
Sadly many women say if they has been braver and sought treatment earlier they would not have required such invasive cancer treatment which has left a lasting impact upon their lives and health.
Cancer does not know your age, yet many younger people are dismissed as being too young to have that type of cancer. Whilst parameters have to exist when diagnosing people, doctors still need to keep in their mind, could this be cancer, rather than dismiss symptoms or misdiagnose their patient?
This group of people often get overlooked or ignored when it comes to accessing health advice and screening.
“You can register as male or female, but you can still only choose between these two options – you can’t say if you are transgender or non-binary,” explains Dr Kamilla Kamaruddin, a doctor who works for the National Health Service (NHS) and transgender woman. “So that’s quite difficult.”
Instead doctors must rely on their patient to tell them.
Even when doctors are well-informed, it can still be difficult for transgender people to access certain potentially life-saving interventions because of the systems that are in place. The gender you’re registered as also dictates which screening tests you are invited to, meaning that thousands of transgender men could be missing out on potentially life-saving cervical screening tests and breast examinations.
“In the UK, people are invited for cancer screenings based on whatever gender they’re registered as in their medical records,” says Alison Berner, an oncologist and part-time gender identity specialist.
This means that transgender men won’t be asked or know they need to attend screenings for breast and cervical cancer,
Better education and inclusive patient databases are needed to ensure healthcare is accessible to everyone regardless of their gender or sexual orientation.
Better sex education in schools and universities can help to encourage young people become familiar and at ease when talking about their gynae health from periods, safe sex, vagina health to pornography.
The Public Health England (PHE) survey also found that those aged 25 to 34 were the least satisfied in bed, with 49 per cent complaining of a lack of sexual enjoyment. Many experienced difficulty communicating with their partner, unhappy relationships and sexually transmitted infections.
Sexual satisfaction was slighty higher for women aged 55 to 64 with less than 33% reporting an unfulfilled sex life. However, the survey did not include if this was because they were enjoying more sex or simply having less sex but enjoying more sexual satisfaction.
Dr Jane Dickson who is vice president of the Faculty of Sexual and Reproductive Healthcare, says:
“The importance of having a healthy, enjoyable sexual life cannot be overstated as this strongly contributes to general wellbeing”.
A healthy sex life offers numerous health benefits to both physical and mental wellbeing, yet women still struggle to enjoy sexual satisfaction as female pleasure is so often overlooked within healthcare.
Working with many healthcare professionals across the UK who recommend some of our sex toys and give out our health brochure to their patients to help them overcome gynaecological conditions and post surgery or cancer treatment we have many male customers calling and ordering products for their female partners to help them overcome sexual health issues to to enable them both to enjoy sexual intimacy and pleasure together.
We often hear when a partner has encouraged their female partner to go to the GP to seek advice when they notice abnormal symptoms.
Gynaecological cancer doesn’t just impact upon the health of the woman but their family and friends too. We know that relationships break down when sex is no longer possible, it feels painful or couples just give trying to enjoy good sexual intimacy and pleasure because they aren’t offer any advice by their GP or consultant.
Many couples mourn the loss of their intimate relationship and end up living celibate lives which is so sad when sexual intimacy and pleasure is so beneficial to your physical and mental well-being.
It is so important for couples to talk to each other about how they feel, when sex feels uncomfortable or painful or why they are avoiding sex so they can seek medical advice.
Painful sex is a common problem yet many couple give up or the woman will endure it just so she can remain intimate.
There are so many reasons why sex may feel painful, the most common being vaginal dryness but there are a variety of gynaecological conditions that impact upon sexual intercourse such as vaginismus, vaginal atrophy, post childbirth scarring, hormonal changes and the impact of surgical or medical conditions.
Exploring new ways to pleasurable sex is a good ways for couples to communicate, and connect intimately even when penetrative sex is not possible. Sex is so much more than penetration, something many healthcare professionals overlook when advising their patients.
Being incontinent is not normal yet many women struggle daily with pelvic floor weakness.
We also need to make it easier for transpeople to access the care they need and feel comfortable when seeking medical advice. They may be missed when it comes to cervical screening appointments or the actual process itself can be triggering which is why HCPs need training in caring for anyone who has a vulva, cervix and vagina to ensure they seek medical advice.
Many gynaecological conditions impact on daily life from painful periods, symptoms of the menopause such as vaginal atrophy, endometriosis, premenstrual dysmorphic disorder (PMDD) the list is endless. Some women even have to give up work or are even dismissed due to their symptoms and many young girls miss days from school due to painful or heavy periods or period poverty as they cannot afford tampons or pads.
The hidden burden of reproductive health was particularly evident in the workplace. Focus groups undertaken as part of the study revealed that reproductive symptoms often affect women’s ability to carry out daily activities, but many conceal their symptoms from work colleagues.
Previous studies show that 12% of women have taken a day off work due to menopause symptoms and 59% have lied to their boss about the reasons for their absence. 1 in 5 take time off to deal with menopausal symptoms and 1 in 50 are on long term sick leave. In addition, the PHE survey revealed that 35% of women have experienced heavy menstrual bleeding, which previous evidence shows is associated with higher unemployment and absence from work.
Some women have to give up their employment because they cannot cope with their health issues in the workplace or are unable to concentrate on their work. This is such a great loss of experience, expertise and knowledge within the workforce.
Therefore we need an open conversation about reproductive/gynaecological health to educate both employers and employees so women feel confident about talking about their reasons for needing time off. Working with occupational health can help women manage their health issues at work to reduce the need to take time off, which in turn, improves working conditions, productivity and saves money for businesses too.
The PHE survey results will form the basis of a cross-governmental 5-year action plan on reproductive health.
We know when partners are involved and informed in their partner’s care and treatment their recovery is often quicker and they are more supported. Research by Ussher et al (2013) found that those couples with a close relationship prior to cancer were more successful at renegotiating their sexual relationship whatever their sexual orientation.
Supportive partners had a positive effect upon sexual intimacy which was hugely beneficial.
Recognising the inequalities in healthcare that many women face, the Department of Health and Social Care launched a Women’s Health Taskforce for England in November 2018.
Jackie Doyle-Price MP, Parliamentary Under Secretary of State for Mental Health, Inequalities and Suicide, is jointly leading the Taskforce with Professor Lesley Regan, President of the Royal College of Obstetricians and Gynaecologists (RCOG). RCOG welcomes the Taskforce, which will focus on significantly improving the health outcomes of girls and women in this country.
In December 2019 the #BetterforWomen report by the Royal College of Obstetricians and Gynaecologists and Faculty of Sexual and Reproductive Health was luanched at the House of Commons. Women are struggling to access vital sexual health and reproductive services, many live with gynae health issues that impact upon their daily life. Lesley Regan RCOG President says “ “If you get it right for women, you get it right for lots of other people,”.
There is a particular focus on prevention across three key stages in a woman’s life – child health and adolescence, young adulthood, and middle age and later life.
Both Jackie Doyle -Price and the RCOG both work with the Eve Appeal.
In May 2021 the Women’s Health Strategy: Call for Evidence was launched- a 14 week consultation period asking anyone with female reproductive organs for their views on women ehalth. The reuslt have yet to be published but hopefully will help to improve diagnosis, treatment research and access to womens health services.
Understanding and talking about gynae health is in the interests of everyone whatever your gender or sexual orientation. Knowing what is normal is important and could just save your life.
The Eve Appeal:www.eveappeal.org.uk
GRACE: Gynae-Oncology Clinical Research and Excellence: www.grace-charity.org.uk
Womb Cancer Support : www.wombcancersupportuk.weebly.com
Jo’s Trust : www.jostrust.org.uk
Ovarian Cancer Action : www.ovarian.org.uk
Ovacome : www.ovacome.org.uk
Daisy Network : www.daisynetwork.org.uk
Menopause Support : www.menopausesupport.co.uk
Cancer Research UK:www.cancerresearchuk.org
The Royal Marsden:www.royalmarsden.nhs.uk
The Christie Hospital:www.christie.nhs.uk
Clic Sargent : www.clicsargent.org.uk
Trekstock : www.trekstock.com
Shine Cancer Support : www.shinecancersupport.org
Royal College of Obstetrics and Gynaecology- www.rcog.org.uk
Endometriosis UK : www.endometriosis-uk.org
The Vicious Cycle : viciouscyclepmdd.wordpress.com
National Association for Premenstrual Syndrome : www.pms.org.uk
Menopause in the Workplace : www.menopauseintheworkplace.co.uk
Lydia Brain was diagnosed with a inflammatory myofibroblastomic tumour in her uterus at the age of 24. Undergoing surgery she was put into a surgical menopause and is infertile. As an advocate and campaigners for GRACE and Trekstock champion she is using her experience to raise awareness about having womb cancer as a young woman, recognising the symptoms and why HCPs need to take notice of your symptoms whatever your age. You can follow Lydia @lid_jar
Cancer and Fertility : www.cancerandfertility.co.uk This has been set up by Becki McGuinness who was left infertile by aggressive cancer treatment when she was just 23-years-old. Now 30, she’s launching a national campaign to ensure women facing cancer are given all the fertility options she should have had
Many people blog about their experience of cervical cancer and I had the pleasure of meeting Karen Hobbs at her amazing comedy show “Tumour Has It” which takes you on her journey of having cervical cancer at the very young age of 24. The show made me laugh, cry and really think about what a person goes through when they get diagnosed with cancer. Even though I’ve cared for many people with cancer during my nursing career and have had family and friends who have had cancer, it is hard to put yourself in their shoes.
She also has a brilliant blog “quarterlifecancer.com”. Working with the Eve Appeal, Karen wants to educate all women about checking yourself for any abnormal signs and symptoms, seeking treatment as soon as possible and having a regular smear test so please read her blog and catch her show if you can.