Q1 / 2019 AN INDEPENDENT SUPPLEMENT DISTRIBUTED IN THE GUARDIAN ON BEHALF OF MEDIAPLANET WHO TAKE SOLE RESPONSIBILITY FOR ITS CONTENTS
EMMA COX, ENDOMETRIOSIS UK “Invisible illnesses, like endometriosis, are normal and shouldn’t be silenced.” » p4
DR SHARON TATE, TARGET OVARIAN CANCER “Ovarian cancer – raising awareness of the disease and its symptoms is key.” » p4
LAURA ANDERSON, WELLBEING OF WOMEN AMBASSADOR “It’s shocking that women’s reproductive health is still taboo.” » p5
Reproductive and Gynaecological Health
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Live life as big and bravely as possible: whatever your fertility story, however it ends.” - Jessica Hepburn, Author, Fertility Campaigner and Founder of Fertility Fest
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One in four women don’t take up their cervical screening invitation.”
Debusting myths around women’s health There are many issues affecting the health of women and girls that still remain off-limits. But speaking about women’s health has never been more important.
he stigma surrounding women’s health often causes women to ignore concerns about their wellbeing, while the fear of embarrassment can leave them suffering in silence. We must do more to address this and break down taboos surrounding women’s health. Women make up 51% of the population and healthcare professionals have unique opportunities to positively influence the health of women across their life course. Many of these interactions are not about ill-health but helping them to do normal things like have safe sex, prevent pregnancy, become pregnant and have a healthy menopause and post-menopausal
life. To make the most impact, we must promote the importance of preventative measures to improve the health of all women at every age and stage of their lives. Cervical screening is at a 20-year low It is disheartening to see that gynaecological health remains a taboo subject among the public, despite more than 21,000 women being diagnosed with one of the five forms of gynaecological cancer each year in the UK1. Cervical cancer, which leads to the death of two women a day, is a largely preventable disease, yet screening rates have dropped to their lowest
level in two decades. Evidence shows that routine screening – which can detect pre-cancerous abnormalities – prevents up to 75% of cervical cancers. However, one in four women don’t take up their screening invitation. Early detection is vital to increase survival rates; we must continue to raise awareness about the disease, its symptoms and these simple measures to prevent it. Later maternal age and weight can impact fertility The 21st century has brought with it the largest ever group of adolescents in history and we must ensure that they can take control of their own reproductive health. To do
PROFESSOR LESLEY REGAN President, Royal College of Obstetricians and Gynaecologists
this successfully, we need to better educate young women and men in our society about their health so we can empower them to make informed choices. Currently, one in seven couples experience difficulty in becoming pregnant2; that’s around 3.5 million people in the UK. By the time a woman decides to have a baby or is already pregnant, she may not realise the impact maternal age and body weight can have on her ability to conceive or have a healthy pregnancy. We know that female fertility starts to decline gradually from the late-20s and more rapidly from the mid-30s onwards. As well
as potentially taking longer to get pregnant, later maternity and being overweight can involve a greater risk of miscarriage and a more complicated labour. As healthcare professionals, we must capitalise on all of the opportunities available to influence women’s behaviour and ensure they have the right information to make informed decisions about their health.
Read more at healthawareness.co.uk
1: https://eveappeal.org.uk/gynaecological-cancers/ 2: https://www.nhs.uk/conditions/infertility/
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Invisible illnesses like endometriosis, are normal and shouldn’t be silenced EMMA COX CEO, Endometriosis UK
Ovarian cancer – raising awareness of the disease and its symptoms is key DR SHARON TATE Head of Primary Care Development, Target Ovarian Cancer
Society would have you believe, from a young age, that periods should be silenced. But finally, we’re changing the way periods and menstrual conditions like endometriosis are spoken about.
ith international photographer, Rankin, turning his lens to endometriosis this month at an exhibition in London and Edinburgh, alongside the education system changing to teach children about menstrual wellbeing, we’re finally starting to change the way society sees invisible illnesses like endometriosis. Endometriosis is a condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body – causing symptoms including chronic pelvic pain, bowel problems, infertility and painful sex. It affects 10% of women from puberty to menopause – although the impact can be felt for life. New curriculum is a step forward, but it must be done right From an alarming average diagnosis time of 7.5 years, to an education system that has failed to equip young women with the knowledge and confidence to talk openly about our bodies, women deserve a better deal when it comes to our health. Breaking the taboo from a young age is the first step to making this happen. The very nature of endometriosis is that it affects gynaecological health; and at a young age, this can be a difficult conversation to have. Last month, following pressure from Endometriosis UK, the government announced long overdue changes to the Sex & Relationship curriculum, which will undoubtedly help eradicate misconceptions around menstrual wellbeing at school. For too long, young girls have been left confused and unprepared for dealing with potential conditions, such as
endometriosis. By teaching children what is and isn’t normal in a safe and controlled environment when it comes to their menstrual cycle, we hope that we will encourage young people to seek help when something is not right. Working with government and schools to educate young people Endometriosis UK now looks forward to working with the government to ensure the new curriculum is implemented across the country to empower children, parents and teachers to talk openly about menstrual wellbeing. There was some predictable backlash in the midst of the positive news about teaching boys and girls about menstrual wellbeing, but Endometriosis UK urges parents and teachers alike to understand the critical importance of young people understanding about their bodies to not only break down the taboo around periods, but to also be a key role in encouraging children to seek help when something is not right. The education you receive can pave the way for your whole future, and the government must provide the guidance teachers need to get this right. We can’t change the lives of women who weren’t given the education they deserved, but we can get it right for the next generation. Together, we can send out the right message that conversations, and invisible illnesses like endometriosis, are normal and shouldn’t be silenced. Read more at healthawareness.co.uk
Eleven women die every day from ovarian cancer in the UK. There is no screening and one in five women is too ill to treat by the time they receive a diagnosis, so raising awareness of the disease and its symptoms is key. Target Ovarian Cancer’s campaign ‘It’s time to TAKE OVAR’ aims to accelerate change and transform the future of more than 25,000 people living with the disease and thousands more yet to be diagnosed.
his March, for Ovarian Cancer Awareness Month, we’re working hard to raise awareness and save lives. Here’s how: We need a national campaign Target Ovarian Cancer is calling for a government-funded symptoms awareness campaign to educate women about the symptoms of ovarian cancer. Awareness is alarmingly low, with just one in five women able to name bloating as one of the key symptoms of the disease. Our recent research shows that the same proportion of women wrongly think a smear test can detect ovarian cancer. In reality, there is no screening for the disease, and awareness of the symptoms is crucial for women. The symptoms of ovarian cancer are: • Persistent bloating - not bloating that comes and goes • Feeling full quickly and/or loss of appetite • Pelvic or abdominal pain • Needing to wee more urgently or more often than usual Solving the problem of late diagnosis There is huge variation in diagnosis of ovarian cancer across the UK. In some parts of England, over half of women
are diagnosed at an early stage, which makes the disease easier to treat. In other areas, just one in five women is diagnosed early. Some of this may be due to population differences such as age, but we know that more work needs to be done to ensure women go to the GP if they are worried, and are sent for the correct diagnostic tests without delays in the system. We need to tackle delays in diagnosis Delayed diagnoses are a major reason that two thirds of women with ovarian cancer are diagnosed once the cancer has already spread. Delays are often due to women not knowing the symptoms and not thinking it is urgent to visit their GP, gaps in GP knowledge and misdiagnosis, and delays in getting the right diagnostic tests. The effect of all of this means some women are simply too ill by the time they receive their diagnosis to be able to withstand the invasive surgery and chemotherapy needed to treat ovarian cancer. Late diagnosis is a complex problem that needs a multipronged approach if we are to improve the outlook for women with ovarian cancer. Futureproofing ovarian cancer diagnosis Educating GPs and GP practice nurses is an essential part of solving this puzzle. Target Ovarian Cancer’s primary care programme challenges healthcare professionals to set aside their misconceptions about ovarian
cancer and skills them up in best practice so more of them can diagnose ovarian cancer earlier. This includes online learning modules that count towards GPs’ and nurses’ professional development, and a GP toolkit to support GPs and general practice nurses to update their knowledge and deliver the right diagnostic tests at the right time. Collaboration with leading educational partners puts ovarian cancer on the agenda at GP conferences and learning days. It is crucial that ovarian cancer diagnosis guidelines for GPs stay relevant, accessible to the GP and flexible. For example, GPs must now consider ovarian cancer if any woman over 50 is having new bladder problems or new IBS-like symptoms. These changes are part of Target Ovarian Cancer’s ongoing work to support primary care professionals. Together, we will accelerate change and transform the futures of more than 25,000 who are living with the disease and thousands more who will be diagnosed. Target Ovarian Cancer’s nurse-led support line provides information, support and signposting for anyone affected by ovarian cancer. It provides a safe place to discuss concerns, from symptoms to diagnosis, treatment and beyond. Read more at healthawareness.co.uk
Get the knowledge, support and proper tools to understand your fertility, and be in the driver's seat of your own body. Reach your fertility goals at www.kindara.com
It’s shocking that women’s reproductive health is still taboo LAURA ANDERSON TV Personality and Ambassador, Wellbeing of Women
I personally underwent a LLETZ operation, which is the laser treatment used to remove a large area of abnormal cells in the cervix. Without Wellbeing of Women research over the past 54 years, I – and many others – could be at this very moment suffering from cervical cancer or, heaven forbid, not be here at all. The fact that, in 2019, women’s reproductive health is still a taboo subject is shocking and is more reason to support the underfunded research. Something needs to change. Women are the future.”
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Knowledge is power when it comes to fertility
MATTHEW WALLS Executive Chairman Concepta Plc.
“With up to 50% of women struggling to identify their fertile phase using traditional ovulation tests1, the use of myLotus a brand new technology, for anyone trying for a baby will, for the first time, accurately track their personal hormone levels at home.” says Matthew Walls.
f you are trying for a baby, knowing when you are about to ovulate can improve your chances of conception. As your body prepares for ovulation, your luteinising hormone (LH) concentration levels rise; this is known as the ‘LH surge’. Now, with the latest lab-quality technology, women can track their LH levels and identify their surge to determine when they’re most fertile, providing them with knowledge of their cycle and ultimately boosting their chances of getting pregnant. What if I don’t fit in the ‘average’ ovulation profile? Over 50 per cent of women do not fit into the ‘average’ ovulation profile1, and as such, may not be able to detect their most fertile days using standard fertility monitors. Fertility expert and myLotus ambassador Dr Larisa Corda says, “LH levels vary greatly from woman-towoman, but even women with low LH levels can have an LH surge. Knowing when you are about to ovulate is invaluable when it comes to trying to conceive. This technology is sensitive to even the lowest levels of LH and is personal to you.” How will knowing about my LH surge help? “Identifying your LH surge means that you can see which days you are most fertile. You can optimise your chances of success by having sex on the days just prior to ovulation and on the day of ovulation itself – normally giving a window of up to 48 hours,” says Dr Corda. “Your LH surge is a useful, reliable indicator of when you’re about to ovulate.” Knowledge is power Sarah Shakib from Swansea says, “I wanted to pinpoint ovulation to make it easier for me and my partner, but with the tests I was using, I never got a positive result, which suggested that I wasn’t ovulating at all. However, with the myLotus Fertility Monitor, I now know where I am in my cycle at any given time. I have my LH numbers and the app shows my graph explaining my fertility levels – it’s like having your own little science Sponsored by lab at home. I now have control over my fertility and a stronger understanding of how Read more at my cycle works.”
The IVF postcode lottery AILEEN FEENEY Chief Executive, Fertility Network
If you need IVF to start a family, expect to pay for it – that’s the appalling and unfair situation in the UK.
IVF and me: Jessica Hepburn – author and fertility campaigner JESSICA HEPBURN Author, Fertility Campaigner and Founder of Fertility Fest
Exactly five years ago, I published my first book, The Pursuit of Motherhood. It was inspired (if that’s right word…) by a decade of fertility treatment. It involved 11 rounds of IVF, multiple miscarriages and an ectopic pregnancy that almost took my life.
National recommendations The national recommendation is for women under 40 to have three full IVF cycles, and women aged between 4042 to have one full IVF cycle. This has been determined by the National Institute for Health and Care Excellence (NICE) to be the most clinically-effective and costeffective treatment for infertility. However, NICE’s guidance is not mandatory and, outside of Scotland, NHS fertility services are rationed unfairly. Fertility Network is campaigning hard to change this; last year over 100,000 people signed our #Scream4IVF online petition to end this unjust situation.
“IVF is a modern miracle” IVF is a modern miracle – since it was pioneered in the UK, 40 years ago, it has created millions of babies worldwide. It’s no longer the preserve of heterosexual couples experiencing fertility problems, it’s increasingly being used by same sex couples and single people with no fertility problems at all. But – and it’s a big but – it doesn’t work every time for everyone and this is something that needs to be understood much more.
ccording to the Human Fertilisation and Embryology Authority, six out of ten people pay for their medical treatment. Where you live, your personal circumstances, medical situation and age are all factors determining whether you and your partner will be facing a potentially financially-crippling IVF bill.
Scotland leads the way Living in Scotland gives you the best chance of accessing NHS fertility treatment. Scotland provides three full IVF cycles for clinically eligible women under the age of 40, plus one full IVF cycle for women aged between 40-42. Wales provides two full IVF cycles for clinically eligible women under the age of 40, plus one full IVF cycle for women aged between 40-42. Northern Ireland provides just one partial IVF cycle for women under 40. England is an IVF blackspot Access to NHS fertility treatment is at its worst in England and depends on your GP’s postcode. Six areas in England don’t offer any NHS IVF at all; 70% offer only one full or partial cycle; 15% offer two IVF cycles and just 12% offer three full cycles. New ways to ration IVF England’s Clinical Commissioning Groups also ration access to NHS IVF by introducing their own access criteria. These additional access criteria are not part of NICE’s guidance and should not be used to determine who is eligible for treatment. A national disgrace You may be denied access to NHS IVF because: you are over 35, your husband’s body mass index is deemed unacceptable, your husband is too old, either you or your husband has a child from a previous relationship, or you have not been trying to conceive for long enough (two years in some areas, three years in others). For the country that pioneered IVF, it’s a national disgrace.
1: Alliende (2002) Mean versus individual hormonal profiles in the menstrual cycle; Fertility and Sterility
Read more at fertilitynetworkuk.org
ince then, I have written another book and founded Fertility Fest - the world’s first arts festival dedicated to fertility. I feel passionate about improving fertility education and helping more people create the families they dream of – with or without children, with or without reproductive science.
IVF can be an emotional, physical and financial roller-coaster If you are on the fertility treatment roller-coaster you need to be prepared for the biggest physical, emotional and possibly financial journey of your life. The disappointing decline of IVF on the NHS means the majority of patients have to pay for their treatment and, like me, you may find yourself re-mortgaging your house. So here’s a little advice from an IVF veteran. My top three tips for anyone going through fertility treatment: 1. Do your research Choose your clinic carefully, seek a diagnosis and make sure that you understand the reason for the treatments you are being prescribed (remembering that this is an emerging area of healthcare and there’s still a lot we don’t know, so you need to become an expert in your own body, listen to all the advice and trust your instinct). 2. Get yourself some emotional support I always say that by far the worst part of IVF treatment is not what’s happening to your body, it’s what’s going on in your head. There’s an increasing amount of support available – from social media communities to trained fertility counsellors and coaches; from support groups to events like Fertility Fest. 3. Don’t give up on ‘Project You’ for ‘Project Baby’ I lost a decade of life to my pursuit of motherhood, trying to control something that was ultimately out of my control. Creating a family is very important, but there are other things to achieve in life that can bring you joy as well. The important thing is to live life as big and bravely as possible: whatever your fertility story, however it ends. Read more at jessicahepburn.com
How to improve your chances of starting a family Whether you’re thinking of starting a family or would simply like to know how to improve your fertility chances for the future, there are some key factors that you need to be aware of.
t’s no secret that leading an unhealthy lifestyle by being overweight, smoking and/or regularly drinking alcohol can have a negative effect on mental and physical wellbeing. However, many people are surprised to learn just how much these factors can also put their fertility at risk. If looking to conceive, men and women should maintain a healthy BMI, moderate their alcohol intake, and cut out smoking altogether in order to give themselves the best chance of success. Whilst maintaining good general health is very important, extreme diets or lifestyles which involve having too low a body fat percentage can cause hormone imbalances
which are detrimental to fertility. Therefore, it’s critical for men and women to keep testosterone, progesterone and oestrogen levels balanced and healthy. Think about egg freezing After the age of 35, female fertility starts to decline at a quicker rate. However, today more women are choosing to have a baby later in life due to career and lifestyle factors. In response to this, many women are now choosing to freeze or preserve their eggs to enhance their chances of conceiving through IVF when they are a bit older and feel ready to have a child. If women wish to delay motherhood, then egg freezing
is something to consider. With the introduction of new freezing techniques, the current success rates make it a viable option with some studies suggesting that frozen eggs do as well as fresh ones. Consider your surroundings Recent studies have shown that there has been a 50% decline in sperm counts in Western men over the last 40 years. One of the factors that is believed to be causing this decline is an increased exposure to harmful toxins, which are produced by industrial and agricultural sectors. Men who want the best chance of conceiving can take measures to lessen the amount that they are
DR JAMES NICOPOULLOS Clinical Director, Lister Fertility Clinic, HCA Healthcare UK
exposed to these damaging toxins by eating organic or locally produced food with less pesticide exposure, minimising the use of plastic and PVC containers, avoiding extremely high temperatures for long periods of time, and evading environments where radiation is present. Have an ‘MOT’ Even before trying to conceive, both couples and individuals may have concerns about their fertility health or be keen to optimise their fertility for when the time comes. A fertility ‘MOT’ involves a series of lifestyle and medical assessments which check for abnormalities and fertility risks. For a lot of men and women,
fertility doesn’t tend to be a priority until they decide to try for a baby. This is most often the time when underlying fertility issues come to light. Undergoing an MOT can be a worthwhile investment to help both individuals and couples gain clarity on their fertility health and plan for the future.
Read more at ivf.org.uk